Background and objectives: Family factors, such as family accommodation and parent-child characteristics, are hypothesised as important maintaining factors in paediatric OCD. There is limited research assessing parent and child behaviour amongst young people with OCD during family interactions. Thus, the current study sought to further explore parent-child interaction variables in OCD, using an observational design with three groups.
Methods: 23 young people with OCD, 30 young people with other anxiety disorders, and 23 young people with no clinical problems, along with their primary caregiver, completed a brief problem-solving discussion task designed to assess family interaction variables. Groups were compared on observer-rated and self-rated parent and child behaviours. It was expected that OCD families would differ from both anxious and nonclinical families on some behavioural dimensions, for example, rating lower on warmth, confidence, and positive problem solving.
Results: Results showed that young people in the OCD group could be differentiated from young people in the clinical and nonclinical comparison groups based on observed behaviour. Young people in the OCD group showed less warmth during their interactions and less confidence in their ability to solve the problem. These children and adolescents also had higher levels of doubt and withdrawal during interactions with their parent. Interestingly, parent behaviour did not differ between the groups, suggesting that parent behaviours are a less reliable indicator of OCD symptomatology.
Conclusions: During family interactions, young people with OCD behave in a different way to young people with another anxiety disorder as well as young people with no diagnosis. These findings provide interesting and important exploratory information relating to observed parent and child behaviour across different clinical and nonclinical groups. Limitations of this study are addressed and directions for future research are discussed.
Background: Lower urinary tract dysfunction (LUTD) is a common clinical condition in children, frequently associated with emotional issues both among the patients and their families. The objective of the present study was to measure depressive and anxious symptoms and quality of life (QoL) in parents of LUTD patients.
Methods: This cross-sectional study applied Beck Depression and Anxiety Inventories and WHOQOL-Bref to 88 caregivers of children with LUTD followed at a tertiary care center. The prevalence of mental disorders in children and adolescents was assessed using the Child Behavior Check List (CBCL 6-18) answered by their caregivers. The association of clinical features and emotional aspects related to the caregivers' quality of life was evaluated through non-parametric correlation (Spearman) and multiple linear regression analysis.
Results: Most of the caregivers were mothers (88%), with a mean age of 41.5 (SD 8.7 years), 67% of them married or in a stable union, and 38% had not completed elementary school. Considering 19 as the cutoff point for the Beck scale, 44% of the sample had a clinical score for depressive symptoms and 43% for anxious symptoms. According to the parents' report, 56% of children with LUTD had a clinical score for behavioral problems in CBCL. Parents' QoL was impaired, and the predictors of poor QoL were the age of the patients and presence of depressive/anxious symptoms in caregivers. Parents' depression/anxiety symptoms and poor QoL significantly correlated with behavioral problems in their children. The CBCL total problems score correlated both to depression (r = 0.38, p < 0.01) and to anxiety in parents (r = 0.49, p < 0.01) (Figure).
Conclusions: These findings indicate a possible emotional impact of LUTD in patients' caregivers. Our study suggests that an approach to the family of LUTD patients' may be an important therapeutic resource for an effective clinical control of this condition.
Background: Caregivers experience significant strains as a result of navigating the complex mental health and/or addiction (MHA) system for their youth with MHA issues. We examined the characteristics of Ontario families with youth with MHA issues and their service needs.
Methods: A cross-sectional survey study investigated the characteristics and service needs of families with youth with MHA issues across the province of Ontario, Canada. A total of 840 caregivers were recruited.
Results: 259 participants (Mage = 45.94, SD = 7.11) identified as caregiving for at least one youth with MHA issues. The majority of the participants were female (70.7%), married (73.4%), and completed at least some college/Bachelor degree (59.1%). The mean age of youth was 16.72 years (SD = 5.33) and the most frequently reported diagnoses were Depression (30.1%), ADHD (27.8%) and Generalized Anxiety Disorder (21.2%). Regression results demonstrated that presently accessing services, presently seeking services, and higher levels of barriers MHA services were significantly predictive of identifying navigation as helpful for finding appropriate MHA services (2(7) = 28.69, p < .001, Nagelkerke R2 = .16). Furthermore, presently accessing services was significantly predictive of identifying case management as helpful (2(7) = 29.59, p < .001, Nagelkerke R2 = .156), and of identifying a primary healthcare provider as helpful (2(7) = 38.75, p < .001, Nagelkerke R2 = .197) for finding appropriate MHA services.
Conclusion: Identifying the nature and extent of youth MHA issues, service needs, and family preferences can inform the development of services that address families' needs and lend vital support for accessing services within a complex system.
There are a growing number of children with an ID/developmental disability. As well, there is evidence of poor health in the caregivers of these children. This article describes a narrative review of the literature regarding the mental and physical health of caregivers of children with ID/developmental disability. The review examined 162 papers. Twenty‐three different factors were identified that may have an effect on the health of these caregivers. Social determinants, individual caregiver variables, characteristics of the child with the disability, family characteristics, and support factors can all affect caregiver health. These variables are inter‐related and illustrate the need to account for complexity when studying the health of caregivers of children with ID/developmental disability.
Recent studies suggest the efficacy of family-based treatment (FBT) among youth with anorexia nervosa (AN) in intensive treatment settings. This study aimed to assess weight outcomes in youth who received an FBT intervention while hospitalized for medical complications of AN. Parental self-efficacy among participating caregivers was also measured. Post-discharge weights of 49 participants were compared with weights of 44 youth who were hospitalized prior to the provision of the FBT intervention. Youth who received the FBT intervention gained significantly more weight than youth in the retrospective treatment as usual group at 3 and 6 months following discharge. FBT youth were 2.84 times more likely than retrospective treatment as usual youth to achieve at least 95% of treatment goal weight at 6 months post-discharge. Finally, parental self-efficacy significantly increased in caregivers who participated in the FBT intervention. Findings provided preliminary support for the provision of FBT to medically hospitalized youth with AN.
Background: The global cancer burden is estimated to have risen to 18.1 million new cases and 9.6 million deaths in 2018. The period of child's diagnosis negatively influences parents socially and psychologically leading to depression.
Objectives: The aim of the study was to assess the prevalence of depression, its associated factors and parent's experience towards care of their cancer diagnosed child.
Methods: A mixed approach quantitative and qualitative cross-sectional study was employed between 15 March and 1 April 2017. Systematic random sampling involving 275 participants in the quantitative and 20 conveniently selected participants for qualitative study were included in the study. Beck's depression inventory scale was used to collect data. Logistic regression including bivariate and multivariate analysis considering 95% confidence interval (CI) was utilized to examine association between dependent and independent variables. P-value <.05 was considered statistically significant. Thematic analysis was used to analyze qualitative data.
Results: The prevalence of depression among parents was 72.4%, with depression levels of: borderline 7.3%, moderate 6.2%, severe 6.5%, and extreme severe depression 3.3%. Single parenting, income, history of depression, and support source were associated with parental depression (adjusted odds ratio, AOR = 6.21; 95% CI: 2.66-14.52), (AOR = 0.34; 95% CI: 0.02-0.86), (AOR = 8; 95% CI: 1.7-37.4), (AOR = 38; 95% CI: 2.6-560), respectively.
Conclusion: Family income, single parenting, and support sources are determinant factors for parental depression in this study. Nurses should early detect parents at risk and give due attention to reduce the risk of depression.
Family-focused therapy (FFT) is an evidence-based intervention for adults and children with bipolar disorder (BD) and their caregivers, usually given in conjunction with pharmacotherapy after an illness episode. The treatment consists of conjoint sessions of psychoeducation regarding bipolar illness, communication enhancement training, and problem-solving skills training. This paper summarizes over 30 years of research on FFT and family processes in BD. Across eight randomized controlled trials with adults and adolescents with BD, FFT and mood-stabilizing medications have been found to hasten recovery from mood episodes, reduce recurrences, and reduce levels of symptom severity compared to briefer forms of psychoeducation and medications over 1-2 years. Several studies indicate that the effects of FFT on symptom improvement are greater among patients with high-expressed emotion relatives. New research focuses on FFT as an early intervention for youth at risk for BD, neuroimaging as a means of evaluating treatment mechanisms, and progress in implementing FFT in community mental health settings.
Study Design: Mixed-method study.; Objectives: Describe caregiver perspectives on the rewards of parenting youth with spinal cord injury (SCI) and explore the relationships between rewards and child/caregiver demographic characteristics and child psychosocial outcomes.; Setting: Data collection occurred at three pediatric specialty hospitals within a single hospital system in the United States.
Methods: Self-identified primary caregivers (n=178) of children aged 1-18 years answered the question: 'What has been most rewarding in parenting a child with SCI'? and completed a questionnaire about their child's health-related quality of life (HRQOL). Participants aged 7-18 years (n=134) also completed tools assessing their community participation, anxiety, depression and HRQOL.
Results: Four reward themes emerged: Enhanced Resilience (for example, resilience in my child, self and family), Caregiver-Child Relationship, Connecting with Others, and Learning. Caregivers of children with lower self-reported school and overall psychosocial HRQOL were more likely to report Enhanced Resilience in their child. Caregivers whose children had fewer depressive symptoms, lower levels of participation and who were older at injury and interview felt rewarded by an enhanced Caregiver-Child Relationship. Caregivers of children with a broader context of participation and higher school and psychosocial HRQOL reported Connecting with Others. Finally, unemployed caregivers and those with less education were more likely to report Learning.
Conclusions: Caregivers reported a variety of rewards from parenting their children with SCI, and several relationships emerged between rewards and demographics and child psychosocial outcomes. Future research should further examine the positive experiences of caregivers and whether focusing on strengths might yield better long-term outcomes for children with SCI.
Prior studies indicate a substantial link between maternal depression and early child health but give limited consideration to the direction of this relationship or the context in which it occurs. We sought to create a contextually informed conceptual framework of this relationship through semi-structured interviews with women that had lived experience of caring for an HIV-infected child while coping with depression and anxiety symptoms. Caregivers explained their role in raising healthy children as complex and complicated by poverty, stigma, and isolation. Caregivers discussed the effects of their own mental health on child well-being as primarily emotional and behavioral, and explained how looking after a child could bring distress, particularly when unable to provide desired care for sick children. Our findings suggest the need for investigation of the reciprocal effects of child sickness on caregiver wellness and for integrated programs that holistically address the needs of HIV-affected families.
Importance: A substantial proportion of parents whose child is diagnosed with a life-threatening illness experience high levels of distress that can lead to long-term mental health difficulties. This can affect the child's recovery.
Objective: To evaluate the efficacy of an acceptance and commitment therapy-based group intervention, delivered using videoconferencing, in reducing posttraumatic stress symptoms (PTSS) in these parents.
Design, Setting, and Participants: This study was a randomized clinical trial of an intervention for parents with elevated acute stress symptoms. It was a single-site study conducted in a tertiary pediatric hospital in Australia. Parents of children aged 0 to 18 years admitted for a life-threatening illness or injury to the oncology, cardiology, or pediatric intensive care departments were eligible. Participants were screened for eligibility within the first month after diagnosis or admission and then were randomized to the intervention group or the waiting list control group 4 to 10 months after diagnosis or admission. Recruitment commenced January 2014, and final postintervention follow-up was completed in February 2018. Data analysis was performed from July to September 2018.
Interventions: Treatment was a psychological acceptance and commitment therapy-based group therapy program called Take a Breath, which consisted of a 6-session parent-mediated psychological intervention delivered via online videoconferences over the course of 8 weeks. Waiting list control participants received treatment as usual and were offered the intervention 3 months after randomization.
Main Outcomes and Measures: The primary outcome was PTSS, as measured by the Posttraumatic Stress Disorder Checklist-Version 5 (total score range, 0-80, with higher scores indicating greater symptom severity). The PTSS was measured both before and immediately after the intervention. Changes in psychological skills taught within the intervention were also evaluated, including acceptance, mindfulness, values-based living, and psychological flexibility.
Results: Of 1232 parents who were assessed for eligibility, 313 were randomized; 161 were allocated to the waiting list control group, and 152 were allocated to the intervention group. Of those allocated, 44 parents in the waiting list group and 37 in the intervention group completed the postintervention questionnaire and were analyzed (81 participants total; mean [SD] age, 37.17 [6.43] years). Sixty-five participants (80.2%) were women, 48 participants (59.3%) were married, and 40 participants (49.4%) lived in rural or regional areas, or in a different state. In addition, 24 parents (29.6%) were in the cardiology illness group, 32 parents (39.5%) were in the oncology group, and 25 parents (30.9%) were in the pediatric intensive care unit group. The intervention group demonstrated significantly greater improvements in PTSS compared with the waiting list group (Cohen d = 1.10; 95% CI, 0.61-1.59; P = .03). The mean Posttraumatic Stress Disorder Checklist-Version 5 scores decreased from 31.7 (95% CI, 27.0-36.4) to 26.2 (95% CI, 21.8-30.7) in the waiting list control group and from 23.3 (95% CI, 18.6-28.1) to 17.8 (95% CI, 13.8-21.8) in the intervention group.
Conclusions and Relevance: The findings of this study support the use of acceptance and commitment therapy to reduce PTSS in parents of very ill children, regardless of diagnosis. These findings also suggest that a brief, group format using a videoconferencing platform can be used effectively to access hard-to-reach populations, particularly fathers and caregivers living in nonmetropolitan areas.
Background: Caregivers of patients with chronic illnesses are often uncompensated for work that is physically demanding, time consuming and emotionally and economically draining. This is particularly true for caregivers of children with nodding syndrome, an emergent neurological disorder of unknown etiology in resource poor settings in Africa. We aimed to explore perceptions of caregivers regarding challenges that a typical caregiver faces when caring for a child with nodding syndrome.
Methods: We used a qualitative exploratory study design with focus group discussions and in-depth interviews to collect data. We analyzed data using the qualitative analysis software package of NVivo and thematic query building.
Results: Emergent themes centered on burden of care with emotional agony as the most prominent. Subthemes reflecting the burden of care giving included child and caregiver safety concerns, burnout, social isolation and rejection, and homicidal ideation. Caregivers also complained of physical and financial constraints associated with the care of children with nodding syndrome.
Conclusions: The findings point to a high burden of care for caregivers of children with nodding syndrome and suggests the need to incorporate community-based psychosocial and mental health care services for the caregivers of affected children into the national health system response.
Objectives: Care efficiency of family can be determined by many factors such as mental and physical health status of family members and their socioeconomic situation. Raising children with disabilities is a burdening and stressful situation for their caregivers. This article examines determinants of care efficiency in a group of Polish parents raising children with developmental disorders.
Methods: The cross-sectional study was conducted in 9 Polish schools for disabled children located in Cracow. Questionnaire that included the Caregiver Burden Scale and the Scale Efficiency of Care was completed by 213 mothers and 30 fathers. During the data analysis parametric tests (e.g. ANOVA) and nonparametric tests (e.g. a Mann–Whitney U test, Kruskal–Wallis test) were used.
Results: Parents' care efficiency and burden of care were on an average level. Sociodemographic variables such as gender, age, place of residence, education and family structure were not related to the care efficiency. The relationship with housing and material conditions of the respondents was shown. The statistical analysis showed the relationship between the level of parents' care efficiency and all subscales of Caregiver Burden Scale. Parents who demonstrated a higher level of care efficiency experienced lower level of burden in areas such as General Strain, Isolation, Disappointment, Emotional Involvement and Environment.
Conclusions: Disability of a child reduces caring potential of a family. Parents experience more physical and mental fatigue, which aggravates their disappointment. It is important to make precise diagnosis of parents' care problems and implement an individualized program to help a family.
Within Asia, HIV prevalence is highest in Thailand, including thousands of children and adolescents. Care for children born with HIV [perinatal transmission of HIV (PHIV)] will need to focus on adolescents for the foreseeable future. Thai PHIV adolescents experience significant mental health and psychosocial challenges, including treatment adherence. Yet, few, if any, comprehensive interventions for them exist. CHAMP+, an evidence-based intervention adapted for Thailand, was evaluated with a pilot randomized control trial at four HIV clinics. Eighty-eight dyads of 9- to 14-year-old PHIV young adolescents/caregivers were randomized to CHAMP+ or standard of care (SOC). Eleven cartoon-based sessions were delivered over 6 months. Participants completed baseline, 6-month (postintervention), and 9-month surveys, measuring youth outcomes (e.g., mental health and adherence), contextual factors (e.g., demographics and caregiver factors), and self- and social-regulation factors (e.g., HIV knowledge and youth-caregiver communication). Multi-level modeling to account for clustering within individuals was used to assess longitudinal changes within and between groups. All families randomized to CHAMP+ completed the intervention. Although the study was not statistically powered to detect differences in treatment effects, the CHAMP+ group significantly improved at 6 months in youth mental health and adherence, HIV knowledge, youth-caregiver communication, internalized stigma, and HIV-related social support, with most improvements sustained at 9 months and significantly better improvements than the SOC group on a number of outcomes. High levels of baseline viral suppression highlight the importance of reaching these young PHIV adolescents at a period of lower risk before adherence and other challenges emerge. Designed to be delivered with limited cost/resources, CHAMP+ Thailand holds scale-up potential.
This mixed method study examined factors associated with parents not attending their child's mental health treatment after initially seeking help for their 2-5 year old child. It was part of a larger study comparing two evidence-based treatments among low-income racial/ethnic minority families seeking child mental health services. Of 123 parents who initiated mental health treatment (71% African American or multi-racial; 97.6% low-income), 36 (29.3%) never attended their child's first treatment session. Socio-demographic characteristics, parenting stress, depression, severity of child behavior problems, and length of treatment delay from intake to first scheduled treatment session were compared for families who did and did not attend their first treatment session. Parents who never attended their child's first treatment session were more likely to live with more than 4 adults and children (p=.007) and have more depressive symptoms (p=.003). Median length of treatment delay was 80 days (IQR =55) for those who attended and 85 days (IQR =67.5) for those who did not attend their child's first treatment session (p=.142). Three themes emerged from caregiver interviews: (a) expectations about the treatment, (b) delays in getting help, and (c) ambivalence about research participation. Findings suggest the need to develop better strategies for addressing risk factors early in the treatment process and reducing the length of time families with adverse psychosocial circumstances must wait for child mental health treatment.
Purpose: The presence of an individual with disability in a family affects the whole family. Families of individuals with cerebral palsy (CP) experience increased psychological anxiety and financial problems; specifically, parents tend to feel time pressure and struggle to maintain their social and cultural activities.
Methods: t-Tests and ANOVA with post hoc Tukey tests were used to compare caregiving time, time pressure, and depression between parents. Multivariate logistic regression analysis was used to examine the effect of caregiving time and time pressure on depression in parents.
Results: Regarding depression, 58 (38.2%) respondents scored ≥16 on the Center for Epidemiological Studies – Depression scale. Respondents supporting a preschool child spent more time than those supporting adults did; those supporting adults reported less time pressure than those supporting individuals of other ages. Caregiving time's effect on depression was not supported, whereas increased time pressure raised the risk of depression.
Conclusions: The frequency of depression among parents supporting individuals with CP exceeded preceding findings. Time pressure due to support appears to directly predict depression. Total time spent caring appears unrelated to depression. It is necessary to prepare various community and family support systems in order to relieve parental caregivers' burden and exhaustion. Interventions should focus on parents with higher time pressure than parents with high caregiving time. Physical and psychological difficulties experienced by parents supporting a child with a disability vary with the child's life stage, meaning that families' care burden partly depends on the age of the individual with disabilities.
Residential treatment (RT) provides a secure setting where youth with moderate to severe emotional and behavioral disorders reside long-term to receive treatment and care. The purpose of this study was to explore caregivers' perceptions of their child's immediate transition home following residential treatment. Ten mothers of youth discharged from RT participated in a semi-structured interview approximately 4 weeks after discharge from RT in Ontario, Canada. The mothers' reports suggested that there was initially some nervousness in the family but that the youth and family members made good effort in their relationship and youth made good efforts in school. About 40% of participants reported that initially the common problems prior to admission to RT were absent; however, about 2 weeks later these problems resurfaced. Caregivers also reported that youth had difficulty connecting with friends and peers, seemed nervous when re-stablishing relationships with caregivers and had difficulty managing their emotions and life's challenges. Most participants reported a perceived lack of professional supports for caregivers and youth following RT. Participants' narratives indicated a need for a continuity of care after RT. Further implications for practice and research are discussed.
Objective: The current study evaluated perceived barriers to care for parents of children with cancer and the mediating effect of illness uncertainty (IU; uncertainty from the ambiguity or unpredictability of the illness) on the relationship between barriers and parental psychological distress. We hypothesized that greater barriers to care would be related to higher levels of IU and, in turn, higher anxiety, depression, and posttraumatic stress symptom (PTSS) ratings.
Methods: As part of an ongoing study of family adjustment to pediatric cancer, 145 caregivers of children diagnosed with cancer completed questionnaires assessing barriers to care, parent IU, and anxious symptoms, depressive symptoms, and PTSS. Time since cancer diagnosis ranged from 1 to 12 months.
Results: Three mediation models assessed IU as a mediator between barriers to care and anxious symptoms, depressive symptoms, and PTSS, controlling for annual income. IU significantly mediated the relationship between barriers to care and depressive symptoms (B = -.03, SE = .02; 95% CI [-.08, -.01]) and to PTSS (B = -.15, SE = .10; 95% CI [-.38, -.03]). The mediation model was not significant for anxious symptoms.
Conclusion: Experiencing barriers to obtaining treatment for their child with cancer is a significant risk factor for symptoms of depression and PTSS among parents. Specifically, greater barriers to care is significantly associated with IU, a well-established precursor to distress in this population. Interventions targeting IU may help ameliorate distress within the context of unmodifiable barriers to care.
Background: Previous research suggests parents' level of satisfaction with their child's school experience is highly variable. The present author explored school satisfaction in a Canadian sample of parents of children with severe and often complex developmental disabilities.
Method: Parents of 185 children completed questionnaires regarding their satisfaction with nine aspects of their child's school experience. Satisfaction was examined in relation to child's age, diagnosis of Autism, adaptive level, and maladaptive behaviour; parents' mental health difficulties and perception of caring burden; and the child's classroom type and level of clinical services at school.
Results: School satisfaction was unrelated to parents' mental health or burden scores, was related to child's adaptive and maladaptive behaviour, as well as type of classroom placement.
Conclusions: It is important to understand what aspects of the school experience are influential for different children and families so that their experience can be optimized as far as possible.
Background: Pediatric oncology diagnoses are distressing to caregivers. However, researchers have not investigated the impact that the type of cancer diagnosis has on caregiver anxiety, depression, distress, and family functioning. The purpose of this study was to longitudinally investigate the early trajectory of caregiver psychological symptoms of anxiety, depression, distress, and family functioning near diagnosis and 6 months later by cancer type, and to examine the demographic factors that may be associated with caregiver emotional and family functioning outcomes.
Methods: Caregivers (n = 122) of children with a recent diagnosis of leukemia/lymphoma or solid tumor completed self-report measures of psychological and family functioning (Hospital Anxiety and Depression Scale, Distress Thermometer, and Family Environment Scale).
Results: In general, caregivers endorsed elevated psychological symptoms at the time of diagnosis, which decreased 6 months later. Caregivers of children with solid tumors endorsed greater anxiety across time than caregivers of children with leukemia/lymphoma did. In addition to caring for a child with a solid tumor, female sex, non-White ethnicity, and non-English language spoken in the home were factors associated with anxious and depressive symptoms and poorer family functioning.
Conclusion: When creating psychosocial interventions for families of children with cancer, the unique demands of solid tumor treatments, the caregiver's sex, and cultural characteristics must be considered to promote coping, resiliency, and problem-solving skills around the time of diagnosis, particularly in more vulnerable families.
Background: When the primary disabilities associated with fetal alcohol spectrum disorders (FASD) are not well supported, individuals are at higher risk for mental health problems and other secondary conditions. The Families on Track (FOT) intervention was designed to prevent secondary conditions and improve family functioning in children with FASD. Promising results from a pilot study demonstrated positive effects on child and caregiver outcomes immediately following the intervention. The objective of this study was to examine the sustainability of these effects 6 months postintervention.
Methods: Thirty children (ages 4 to 8) with prenatal alcohol exposure and their caregivers were enrolled in the original study. Families were randomized to the FOT intervention or an active comparison group that provided comprehensive assessment and individualized feedback. The intervention integrated a positive parenting curriculum and a child skills group. Families were assessed at baseline, postintervention, and 6‐month follow‐up visits. Follow‐up data were available for 24 families on child and caregiver outcomes. Data were analyzed using effect size calculations and analysis‐of‐variance techniques.
Results: Relative to the comparison group, intervention families showed continued gains in parenting efficacy and maintained prior improvements in FASD knowledge over the follow‐up period. Although intervention families reported a decrease in their needs being met over the follow‐up period, they continued to report their needs being met to greater extent than those in the comparison group. Consistent with postintervention outcomes, children in both groups exhibited similar decreases in child disruptive behavior 6 months following the intervention. Unfortunately, positive gains seen at postintervention for child self‐esteem and emotion regulation were attenuated at follow‐up.
Conclusions: This pilot study yielded promising effects on important areas of caregiver functioning. However, the intervention's impact on child functioning waned over time, suggesting the need for sustained or alternate child intervention.
Background: Individuals with fetal alcohol spectrum disorders ( FASD) are at high risk for costly, debilitating mental health problems and secondary conditions, such as school disruption, trouble with the law, and substance use. The study objective was to pilot a multicomponent intervention designed to prevent secondary conditions in children with FASD and improve family adaptation.
Methods: Thirty children with FASD or prenatal alcohol exposure ( PAE) (ages 4 to 8) and their primary caregivers were enrolled. Families were randomized to either the Families on Track Integrated Preventive Intervention or an active control of neuropsychological assessment and personalized community referrals. The 30-week intervention integrates scientifically validated bimonthly, in-home parent behavioral consultation, and weekly child skills groups. Outcomes measured at baseline and follow-up postintervention included intervention satisfaction, child emotional and behavioral functioning, child self-esteem, caregiver knowledge of FASD and advocacy, caregiver attitudes, use of targeted parenting practices, perceived family needs met, social support, and self-care. Data analysis emphasized calculation of effect sizes and was supplemented with analysis of variance techniques.
Results: Analyses indicated that families participating in the intervention reported high program satisfaction. Relative to comparison group outcomes, the intervention was associated with medium-to-large effects for child emotion regulation, self-esteem, and anxiety. Medium-sized improvements in disruptive behavior were observed for both groups. Medium and large effects were seen for important caregiver outcomes: knowledge of FASD and advocacy, attributions of behavior, use of antecedent strategies, parenting efficacy, family needs met, social support, and self-care.
Conclusions: This pilot study yielded promising findings from the multicomponent Families on Track Integrated Preventive Intervention for child and caregiver outcomes. An important next step is to complete a randomized control trial of the Families on Track Program with a larger sample fully representative of this underserved clinical population with built-in study of implementation parameters.
Objective: To evaluate longitudinal changes in caregiver depression, anxiety, and family relationships following resective surgery for pediatric drug‐resistant epilepsy (DRE).
Methods: This multicenter cohort study involved 177 caregivers of children with DRE aged 4‐18 years (63 surgical and 114 nonsurgical). Caregivers completed measures of depression (Quick Inventory of Depressive Symptomatology), anxiety (Generalized Anxiety Disorder 7‐item scale), and satisfaction with family relationships (Family Adaptability, Partnership, Growth, Affective, and Resolve scale) at baseline, 6 months, and 1 year. Additional data collected at baseline included child, caregiver, and family sociodemographic and clinical factors as well as family environment (demands and resources).
Results: At 1 year, 64% and 27% of surgical and nonsurgical patients were seizure‐free, respectively. Linear mixed‐effects models found a reduction in caregiver depression (b = −0.85, P =.004) and anxiety (b = −1.09, P =.003), but not family satisfaction (b = 0.18, P =.31) over time. There was no effect of treatment. When seizure outcome was added to the model, seizure freedom was associated with fewer depressive symptoms (b = −1.15, P =.005) and greater family satisfaction (b = 0.65, P =.006), but not anxiety (b = −0.41, P =.42). A greater proportion of caregivers of patients who achieved seizure freedom (32%) versus continued seizures (18%) reported clinically meaningful improvement in depression at 1 year (P =.03). Lower baseline depression (β = 0.42, P <.001), greater family resources (β = −0.18, P =.04), and male caregiver (β = 0.15, P =.02) predicted lower caregiver depression, and lower baseline anxiety (β = 0.47, P <.001), greater family resources (β = −0.24, P =.01), and higher education (β = −0.13, P =.04) predicted lower caregiver anxiety at 1 year. Baseline functioning was the only predictor of family relationships at 1 year (β = 0.49, P <.001).
Significance: Caregivers of children who achieved seizure freedom, irrespective of surgical treatment, report fewer depressive symptoms and greater satisfaction with family relationships. Baseline functioning is the strongest predictor of outcome; however, caregivers of families with fewer resources and supports are also at risk of poor psychosocial outcomes.
Background: Compared with other renal replacement therapies, hemodialysis treatment can impose restrictions on children with chronic renal failure and their mothers. Such pediatric illness can also lead to negative effects on mothers' physical and mental health. Knowledge about mothers' experiences can aid medical teams to support mothers in playing their roles as care managers. Providing supports to mothers can exert significant effects on mothers' health status and indirectly improve patient outcomes and whole family functioning. This study was aimed at understanding the meanings of care for children undergoing hemodialysis based on mothers' lived experiences.
Materials and Methods: This study is a qualitative research using hermeneutic phenomenology. A total of 17 interviews were conducted with 11 mothers of children undergoing hemodialysis. The interview sessions were recorded and transcribed, after which the data were analyzed using van Manen's methodology.
Results: The main themes identified in this study was “immersion in an ocean of psychological tension,” which suggests that the mothers of the children undergoing hemodialysis are overwhelmed by the numerous psychological pressures that they encounter during their children's treatment. This theme was constituted by the subthemes “bewilderment between hope and despair,” “endless concerns,” “agony and sorrow,” and “a sense of being ignored.”
Conclusions: The findings indicated the need to implement multilateral support measures that align with the educational, emotional–psychological, and financial needs of mothers with children receiving hemodialysis treatment. Such measures should be taken with the participation of multidisciplinary teams.
Caregiving is a complex health care activity, from an informal family level activity; it is becoming a major part of health care. In India, family members are mostly caregivers for persons with mental disabilities. The present study assessed the stress among the caregivers of mentally disabled children (Autistic Spectrum Disorder, Intellectual Disability, and Attention Deficit Hyperactivity Disorder) and found the association between stress and selected socio-demographic variables. This was an institutional based cross-sectional study with a duration of six months, i.e. from January 2019 to June 2019. This study was conducted among the caregivers availing services (therapies and follow-ups) at the National Institute for Empowerment of Persons with Multiple Disabilities, Chennai, Tamil Nadu. The level of stress was assessed using the Kingston Caregiver Stress Scale. This study was conducted with time-bound complete enumeration method, by which data from 101 participants were collected. The results of this study showed that 64.3% of the caregivers had the severe level of stress, 21.7% of the caregivers had a moderate level of stress and 13.8% of the caregivers had mild stress. Hence, it can be concluded that caregiver's stress is an important element to determine the burden and the unexplained psychological pressure a caregiver holds onto.
Complex relationships between race and socioeconomic status have a poorly understood influence on psychologic outcomes in pediatric oncology. The Family Symptom Inventory was used to assess symptoms of depression and anxiety in pediatric patients with cancer and their caregivers. Separate hierarchical linear regression models examined the relationship between demographic variables, cancer characteristics, socioeconomic status, and access to care and patient or caregiver depression/anxiety. Participants included 196 pediatric patients with cancer (mean age, 11.21 y; 49% African American) and their caregivers. On average, caregivers reported low levels of depression/anxiety. Symptoms of depression and anxiety in patients were correlated with poorer mental health in caregivers (r=0.62; P<0.01). Self-reported financial difficulty (β=0.49; P<0.001) and brain cancer diagnosis for their child (β=0.42; P=0.008) were significantly associated with depression and anxiety in caregivers. Analysis did not reveal significant associations between race, household income, or access to care and patient or caregiver depression/anxiety. Perception of financial hardship can adversely impact mental health in caregivers of children with cancer. Psychosocial assessment and interventions may be especially important for caregivers of patients with brain tumors and caregivers who report feeling financial difficulty.
Background: A substantial proportion of parents whose child is diagnosed with a life-threatening illness, experience high levels of distress that can lead to long-term difficulties in mental health, family functioning and child adjustment. This study evaluates the efficacy of an Acceptance Commitment Therapy-based group intervention designed to reduce distress symptoms in these parents. The program is delivered using videoconferencing to overcome factors that prevent participation in traditional face-to-face therapy.
Method/design: The study is a randomized control trial of the Take A Breath group intervention for parents demonstrating elevated symptoms of acute stress, delivered via videoconferencing in six 90 min group sessions. Participants are the primary caregivers of children aged 0 to 18 years admitted for a life threatening illness or injury to the Oncology, Cardiology, Neurology or Intensive Care Departments of a tertiary pediatric hospital. Parents will be randomized to intervention or waitlist control 4-10 months after their child's diagnosis. Measures will be collected prior to and immediately post intervention for intervention and waitlist parents to assess program efficacy. Intervention parents will be followed up at 6 months to assess the maintenance of program effects. We predict that intervention parents will show fewer symptoms post intervention than waitlist parents (primary outcomes: traumatic stress, depression, anxiety, stress symptoms), reflecting improvements in the psychological skills addressed in the intervention (mediating factors). It is anticipated that reductions in mental health difficulties for intervention parents will be maintained up to 6 months post-intervention and will be associated with broader improvements in parents' adjustment, child adjustment and child wellbeing (secondary outcomes).
Discussion: This study is unique in evaluating a group intervention delivered to parents of children affected by of a diverse range life-threatening illness or injury. Online communication technology is employed to reduce participation barriers. If proven efficacious, this trans-diagnostic approach offers the potential for broad use as part of the suite of psychosocial services provided to families through tertiary pediatric settings.
Objective: Recovery from an eating disorder (ED) may be defined differently by different stakeholders. We set out to understand the definition of ED recovery from the perspective of patients, their parents, and clinicians.
Method: We recruited patients with EDs (n = 24, ages 12–23 years) representing different diagnoses (anorexia nervosa n = 17, bulimia nervosa n = 4, binge‐ED n = 2, avoidant/restrictive food intake disorder n = 1), along with their parents (n = 20), dietitians (n = 11), therapists (n = 14), and primary care providers (n = 9) from three sites: Boston Children's Hospital, University of Michigan C. S. Mott Children's Hospital, and Penn State Hershey Children's Hospital. In‐depth, semi‐structured, qualitative interviews explored participants' definitions of recovery. Interviews were analyzed using inductive data‐driven thematic analysis. Statistical analyses followed to examine the distribution within each theme by respondent type. Results: Qualitative analysis resulted in the emergence of four overarching themes of ED recovery: (a) psychological well‐being, (b) eating‐related behaviors/attitudes, (c) physical markers, and (d) self‐acceptance of body image. Endorsement of themes two and four did not significantly differ between patients, parents, and clinicians. Clinicians were significantly more likely to endorse theme one (χ2 = 9.90, df = 2, p =.007, φc = 0.356) and theme three (χ2 = 6.42, df = 2, p =.04, φc = 0.287) than patients and parents.
Discussion: Our study demonstrates overwhelming support for psychological markers as indicators of ED recovery by all three groups. Clinicians should remain open to additional markers of recovery such as body acceptance and eating‐related behaviors/emotions that may be of critical importance to patients and their caregivers.
Aims: The aim of this study was to explore the extent to which Australian child and family health nurses work with families with complex needs and how their practice responds to the needs of these families. Background. Many families with young children face challenges to their parenting capacity, potentially placing their children at risk of poorer developmental outcomes. Nurses increasingly work with families with mental health problems, trauma histories and/or substance dependence. Universal child health services must respond effectively to these challenges, to address health inequalities and to promote the best outcomes for all children and families.
Design: The descriptive study used cross-sectional data from the first national survey of child and family health nurses in Australia, conducted during 2011. Methods. Survey data reported how often, where and how child and family health nurses worked with families with complex needs and their confidence in nursing tasks.
Findings: Many, but not all, of the 679 respondents saw families with complex needs in their regular weekly caseload. Child and family health nurses with diverse and complex caseloads reported using varied approaches to support their clients. They often undertook additional professional development and leadership roles compared with nurses who reported less complex caseloads. Most respondents reported high levels of professional confidence.
Conclusion: For health services providing universal support and early intervention for families at risk, the findings underscore the importance of appropriate education, training and support for child and family health professionals. The findings can inform the organization and delivery of services for families in Australia and internationally. References
Research confirms that the mental health burdens following community-wide disasters are extensive, with pervasive impacts noted in individuals and families. It is clear that child disaster outcomes are worst among children of highly distressed caregivers, or those caregivers who experience their own negative mental health outcomes from the disaster. The current study used path analysis to examine concurrent patterns of parents' (n = 420) experience from a national sample during the early months of the U.S. COVID-19 pandemic. The results of a multi-group path analysis, organized by parent gender, indicate good fit to the data [X2(10) = 159.04, p < .01]. Results indicate significant linkages between parents' caregiver burden, mental health, and perceptions of children's stress; these in turn are significantly linked to child-parent closeness and conflict, indicating possible spillover effects for depressed parents and compensatory effects for anxious parents. The impact of millions of families sheltering in place during the COVID-19 pandemic for an undefined period of time may lead to unprecedented impacts on individuals' mental health with unknown impacts on child-parent relationships. These impacts may be heightened for families whose caregivers experience increased mental health symptoms, as was the case for fathers in the current sample.
Family interventions in anorexia nervosa (AN) have been developed to ameliorate maladaptive patterns of patient-carer interaction that can play a role in illness maintenance. The primary aim of this study is to examine the inter-relationship between baseline and post-treatment distress in dyads of carers and patients with AN to examine the interdependence between carers and patients. The secondary aim is to examine whether a carer skills intervention [Experienced Carer Helping Others (ECHO)] impacts on this inter-relationship. Dyads consisting of treatment-seeking adolescents with AN and their primary carer (n = 149; mostly mothers) were randomised to receive a carer skills intervention (ECHO) in addition to treatment as usual (TAU), or TAU alone, as part of a larger clinical trial. Carers and patients completed a standardised measure of psychological distress (The Depression, Anxiety, and Stress Scale) at baseline and 12 months post-treatment. The Actor Partner Interdependence Model was used to examine longitudinal changes in interdependence by treatment group. As expected, post-treatment levels of distress were related to baseline levels in both groups (actor effects). Moreover, carer distress at 12 months was related to patient distress at baseline for the TAU (partner effects), but not for the ECHO group. Finally, carers' distress change was not a significant predictor of patients' body mass index (BMI) change in the two treatment conditions. These findings are limited to predominantly mother-offspring dyads and may not generalise to other relationships. The ECHO intervention which is designed to teach carers skills in illness management and emotion regulation may be an effective addition to TAU for ameliorating interdependence of distress in patients and their primary carers over time.
Finding fit between work and family responsibilities is challenging for parents, especially when raising a child with mental health difficulties. The purpose of this study was to investigate the relationship of children's problematic behaviors to maternal employment and difficulty combining work and family obligations. Data were analyzed from 174 mothers parenting a child with a diagnosis of attention deficit hyperactivity disorder who completed child problem behavior (child behavior checklist), family functioning, and employment measures at baseline and 12 months later. Results from logistic regression analysis indicated that children's problematic behaviors predicted maternal employment. Structural equation modeling showed that children's higher baseline scores on the child behavior checklist internalizing scale were related to difficulty combining work and family at 12 months, even after controlling for difficulty of combining work and family at baseline. Children's externalizing scores were not found to predict difficulty combining work and family responsibilities. Further analysis did not confirm mediation between children's externalizing and internalizing behaviors, family conflict, and difficulty combining work and family. Given these results, service providers need to more comprehensively address the intersection of children's mental health difficulties and work-family fit in order to better support caregivers as parents and employees.
Most studies on the quality of life of caregivers of children with cystic fibrosis (CF) have focused on the mental health of mothers, reflecting a biased underlying assumption that mothers are the primary caregivers. The aim of this study was to explore the experience of fathers caring for a child with CF. Twenty fathers of children with CF were studied via a semi-structured interview using Husserl's (1970) descriptive phenomenology. Fathers were enrolled from two accredited CF centers in Texas. Six themes emerged from the interviews: fathers reported feeling overwhelmed, feeling isolated, experiencing altered family dynamics, actively seeking resources, experiencing financial strain, and feeling hope. Fathers of children with CF reported distressing experiences in connection with their child's diagnosis of CF and during the course of their child's disease, but also reported a strong feeling of hope for the future. Practical implications for nurses include screening for anxiety and depression in fathers at the time of CF diagnosis, as well as potentially implementing a peer mentoring program for fathers.
Cystic fibrosis (CF) is a life-shortening genetic disease with many treatment requirements that necessitate the participation of a caregiver, especially if the patient is a child. We performed an integrated literature review of original research evaluating quality of life in caregivers of patients with CF. We searched the terms quality of life, cystic fibrosis, and caregivers in the MEDLINE, CINAHL, Child Development and Adolescent Studies, PsycARTICLES, and Psychology and Behavioral Sciences Collection databases from 2007 to 2017. Nine articles were included and showed that caregiver quality of life is affected by caring for a child with CF as evidenced by high rates of anxiety and depression. Anxiety and depression in caregivers affects adherence to the child's treatment regimen, causing detrimental effects on the health of the child. Screening for depression and anxiety and referral for treatment when necessary are needed to optimize family health. Findings include 1) CF has numerous treatment burdens for caregivers, 2) rates of anxiety and depression are two to three times higher in caregivers of patients with CF than in the general population, 3) depressed parents are less likely to adhere to their child's treatment regimen, and 4) few CF families report having received mental health screening or treatment.
Children affected by HIV and AIDS have significantly higher rates of mental health problems than unaffected children. There is a need for research to examine how social support functions as a source of resiliency for children in high HIV-prevalence settings such as South Africa. The purpose of this research was to explore how family social support relates to depression, anxiety, and post-traumatic stress (PTS). Using the ecological model as a frame, data were drawn from a 2011 cross-sectional study of 1380 children classified as either orphaned by AIDS and/or living with an AIDS sick family member. The children were from high-poverty, high HIV-prevalent rural and urban communities in South Africa. Social support was analyzed in depth by examining the source (e.g. caregiver, sibling) and the type (e.g. emotional, instrumental, quality). These variables were entered into multiple regression analyses to estimate the most parsimonious regression models to show the relationships between social support and depression, anxiety, and PTS symptoms among the children. Siblings emerged as the most consistent source of social support on mental health. Overall caregiver and sibling support explained 13% variance in depression, 12% in anxiety, and 11% in PTS. Emotional support was the most frequent type of social support associated with mental health in all regression models, with higher levels of quality and instrumental support having the strongest relation to positive mental health outcomes. Although instrumental and quality support from siblings were related to positive mental health, unexpectedly, the higher the level of emotional support received from a sibling resulted in the child reporting more symptoms of depression, anxiety, and PTS. The opposite was true for emotional support provided via caregivers, higher levels of this support was related to lower levels of all mental health symptoms. Sex was significant in all regressions, indicating the presence of moderation.
Objective: Little is known about relations between domains of psychosocial risk among pediatric cancer populations. The Psychosocial Assessment Tool 2.0 (PAT2.0) is one internationally validated screening measure that can examine these relations. This study aimed to examine risk profiles and predictors of these patterns exhibited by American and Dutch families.
Methods: Caregivers of children newly diagnosed with cancer (N = 262; nUSA=145, nNL=117) completed the PAT2.0 as part of larger studies conducted in the United States and the Netherlands. Latent profile analysis and multinomial logistic regression examined differences in demographic and medical variables across risk profiles. Domains assessed included Family Structure/Resources, Child Problems, Sibling Problems, Family Problems, Caregiver Stress Reactions, and Family Beliefs.
Results: Four groups were identified: "Low-Risk" (n = 162) defined by generally low risk across domains; "Moderate-Caregiver" (n = 55) defined by elevated Caregiver Stress Reactions domain; "Moderate-Children" (n = 25) defined by elevated Child Problems and/or Sibling Problems, and "Elevated-Risk" (n = 20) marked by generally high overall risk. Dutch families had higher odds of being in the Elevated-Risk group, compared to the Low-Risk group. Caregiver age, gender, and educational attainment predicted group membership. Families classified as Targeted or Clinical had higher odds of being in the Moderate or Elevated risk groups.
Conclusion: The PAT2.0 appears to identify largely similar patterns of risk, suggesting that families experience common psychosocial difficulties in both American and Dutch societies. The two Moderate groups demonstrated specific risk sources, suggesting that evaluation of domain patterns, rather than reliance on PAT2.0 risk level, could be of clinical benefit.
Objectives: To investigate the burden of systemic juvenile idiopathic arthritis (SJIA) on health-related quality of life (HRQOL) and resource use of patients and caregivers (families) on biologic therapy.
Methods: This international study assessed SJIA burden in patients on biologics, using a caregiver questionnaire and retrospective chart review. Validated measures included: Child Health Questionnaire Parent-Form 50 (CHQ-PF50), 36-Item Short-Form Health Survey (SF-36v2) and Work Productivity and Activity Impairment questionnaire: Specific Health Problem (WPAI:SHP). Caregivers completed function, treatment satisfaction and resource utilisation questions.
Results: Sixty-one biologic treated patients participated (12 anakinra, 25 canakinumab, 24 tocilizumab). Mean age at diagnosis and survey completion was 6.4 and 11.3 years, respectively. Mean (±SD: standard deviation) CHQ-PF50 physical (PhS) and psychosocial (PsS) summary scores were significantly lower in SJIA patients than a normative population (PhS: 40.0±18.2 vs. 53.0±8.8; PsS: 46.6±11.3 vs. 51.2±9.1) as was caregivers' mean SF-36v2 mental component score (MCS; 46.2±10.7 vs. 50.0±10). Assistive devices were required by 54%; 20% required home/car alterations. According to caregivers, biologic treatment completely improved SJIA symptoms in 48% on canakinumab or tocilizumab and 32% on anakinra. Over 2 months, patients missed 2.9 school days due to SJIA (10% yearly loss). Caregivers lost 25 work days annually and 27.5 days of productivity (WPAI-SHP: mean absenteeism 10%; presenteeism 11%). Yearly SJIA travel/treatment costs averaged $1,130.
Conclusions: SJIA patients on biologic therapy experience HRQOL impairment, caregivers' mental well-being suffers and productivity losses and expenses are incurred. Therapeutic interventions that reduce the burden of SJIA are required.
In pediatric settings, a valid and reliable assessment of negative and positive dimensions of caregiving can inform intervention processes and improve parent–child adaptation outcomes. While caregiving is a normative component of parenting, the experience can be quantitatively and/or qualitatively different for parents of children with a chronic health condition. The aim of this study was to systematically examine the psychometric properties of the "Revised Burden Measure" in a sample of parents of children with and without chronic health conditions. The "Revised Burden Measure" and self-reported measures of quality of life and mental health were administered to a sample of parents who had children with (n = 277) or without (n = 117) chronic health conditions. Classical test theory, item response theory, multi-group confirmatory factor analysis, and multivariate and univariate analyses of covariance were conducted to investigate the reliability and validity of the instrument. The "Revised Burden Measure" was shown to have good reliability, as well as criterion and known-groups validity. The data showed minor DIF by children's health status. Confirmatory factor analyses revealed a second-order model of caregiving burden (with Relationship, Objective and Subjective burdens loading on Overall Burden) and the construct validity of the complementary Uplifts subscale. Additionally, multi-group analyses ascertained the measurement and structural invariance of the model by children's health status. The results generally confirm the reliability and validity of the "Revised Burden Measure" and demonstrate its overall clinical and developmental applicability in pediatric settings. Highlights: The "Revised Burden Measure" is a valid and reliable measure for use in pediatric settings. This clinically informative instrument is easy to administer, score and interpret. The "Revised Burden Measure" enables a comprehensive assessment of negative and positive dimensions of caregiving. This measure may be used to assess the caregiving experience of parents who have children with or without chronic conditions. The instrument is recommended for the assessment of caregiver's burdens and uplifts across different life-span periods.
Objective: This study sought to understand caregivers' (CGs') responses to early cleft lip/palate care for their infants.
Method: A prospective, mixed methods multicenter longitudinal study was conducted among CGs (N = 118) seeking treatment for their infants' cleft lip and palate or cleft lip only at 1 of 6 cleft treatment centers in the United States. Participants were in 1 of 2 treatment groups: traditional care only or nasoalveolar molding (NAM) plus traditional care. The CGs completed semistructured interviews and standardized questionnaires assessing psychosocial well-being and family impact at 3 time points: the beginning of treatment (∼1 month of age), prelip surgery (∼3-5 months of age), and postpalate surgery (∼12-13 months of age). Multilevel modeling was used to longitudinally assess CGs' psychosocial outcomes.
Results: Although the first year was demanding for all CGs, NAM onset and the child's lip surgery were particularly stressful times. CGs used optimism, problem-solving behavior, and social support to cope with this stress. Qualitatively, CGs' ability to balance cleft treatment demands with their psychosocial resources and coping strategies influenced family adaptation. Qualitative and quantitative results indicated CGs of NAM-treated infants experienced more rapid declines in anxiety and depressive symptoms and better coping skills over time than CGs whose infants had traditional care.
Conclusion: CGs of NAM-treated infants experienced more positive psychosocial outcomes than CGs whose infants had traditional care. Results from the mixed model support the family adjustment and adaptation response model as used in pediatric chronic condition research.
Rates of engagement in mental health care are disproportionately low for low-income, racial/ethnic minority youth. We will present novel research on caregiver-reported challenges to engagement in care, and the results of research on strategies supporting caregivers to overcome barriers to engagement.
Anxiety and mood disorders represent two of the most common disorders experienced by children/adolescents. Untreated anxiety or mood disorders can put children and adolescents at risk for other conditions, like disruptive behavior and substance use disorders, that can have far-reaching consequences even after the mood or anxiety disorder is treated. For caregivers, providing care or raising a child or adolescent with a diagnosed mood or anxiety disorder can impact caregivers in various ways. The burden of care associated with providing care to a child or adolescent who carries a mood or anxiety disorder diagnosis includes fiscal responsibility, conflicts between family members, missed time at work, exhaustion, increased sadness, and limitations of personal freedom. The proposed program will integrate the ecological perspective, system theory, and the biopsychosocial framework to develop interventions that use cognitive-behavioral and family-systems based interventions to provide psychoeducation to caregivers and children or adolescents with a diagnosed mood or anxiety disorder. The proposed program offers practical strategies that use these multiple theories to provide a workbook that mental health professionals can use to engage, inform, and educate caregivers and children or adolescents with a diagnosed mood or anxiety disorder. The proposed program's likely outcomes include reducing anxiety and mood-related symptoms in children and adolescents, reduced caregiving burden, and increased service utilization to manage mood and anxiety symptoms in children and adolescents.
Although stigma related to developmental disorders (DD) has been associated with poor mental health among caregivers, an in-depth understanding of factors that influence internalisation of stigma by caregivers is missing. The aim of our study was to explore perceptions and experiences of stigma among parents of children with DD in Ethiopia and examine the contributing and protective factors for internalised stigma based on the perspectives of the parents themselves. We conducted in-depth interviews with eighteen parents (fourteen mothers, four fathers) in Addis Ababa (between December 25, 2017 and January 8, 2018) and the rural town of Butajira (between August 08, 2018 and August 16, 2018). We analysed the data using thematic analysis. Parents perceived and experienced different forms of stigma that were directed towards their child (public stigma) and themselves (courtesy stigma). Some parents also described how they isolated themselves and their child from social life (affiliate stigma). Parents perceived the negative consequence of stigma on the lives of their child with DD, siblings and themselves. Most parents also described examples of positive reactions and support from their own family and the community. Participants' accounts suggested supportive contributions and positive responses from the general public came primarily from those who had better awareness of DD. Not all parents in our study internalised the stigma that was directed at them. Whilst perceived family support and acceptance and increased awareness about DD appeared to help some parents not to internalise stigma, the perceived lack of social support and acceptance made some parents vulnerable to internalised stigma. These findings can inform anti-stigma intervention priorities. Awareness-raising activities targeting the community as a whole as well as interventions targeting parents themselves are likely to be beneficial. Interventions should consider the wellbeing of the whole family unit rather than focus on individuals alone.
Background: Chronic diseases in childhood can affect the physical and mental health of patients and their families. The literature on pediatric chronic diseases has found important associations between the sociodemographic variables of children and their caregivers and negative health consequences in families.
Methods: In this study, we aimed to design and validate a questionnaire on sociodemographic variables that would be useful for research on pediatric chronic diseases; and investigate the relationship between sociodemographic variables and psychosocial variables among family caregivers. First, we created a questionnaire that consists of 20 demographic, medical, and family-related items based on a literature review and expert evaluations. This questionnaire was then validated by 335 expert reviewers in the field of Social Work, who work daily with the families of patients with chronic diseases in 10 National Institutes of Health of Mexico. The validation was based on three empirical criteria created specifically for this study, and the reviewers evaluated the usefulness, relevance, and permanence of the items. In a second cross-sectional, correlational and comparative study, a total of 446 family caregivers of children with chronic diseases were interviewed, and they completed the Sociodemographic Variables Questionnaire for research on family caregivers of children with chronic sociodemographic diseases and four psychosocial measurement instruments for evaluating anxiety, depression, caregiver burden and quality of life.
Results: Based on the results of the first study, we created the Sociodemographic Variables Questionnaire (Q-SV) for research on family caregivers of children with chronic diseases, and it includes 17 items that assess demographic, medical, and family characteristics. The results of the second study showed that the 17 sociodemographic variables obtained in the validation by expert judges are useful for measuring and evaluating the relationship between psychosocial variables in families of children with chronic diseases.
Conclusions: Psychosocial and sociodemographic factors are relevant for the development of research processes for families that care for children with chronic diseases.
Background: Currently, information on factors associated with anxiety in family caregivers of children with chronic diseases is unavailable, indicating a significant gap in the literature. Therefore, this study aims to identify the psychosocial and sociodemographic variables associated with anxiety in family caregivers of children with chronic diseases.
Methods: In 2018, a nonprobability sample of 446 family caregivers was recruited at the National Institute of Health in Mexico City. The participants completed a sociodemographic variable questionnaire, clinical questions, and 18 psychosocial assessment scales, including a scale to assess family caregiver anxiety.
Results: Family caregiver anxiety was correlated with almost all psychosocial variables and one out of three clinical variables but with none of the sociodemographic variables. Furthermore, a multiple linear regression model with five psychosocial variables was established to predict family caregiver anxiety.
Conclusions: Some psychosocial variables have effects on caregiver anxiety that are relevant for interventions. Clinical interventions should be implemented based on the psychosocial variables associated with family caregiver anxiety.
Interventions for main carers of adult patients with anorexia nervosa (AN) can reduce the caregiving burden and increase caregiver skills. However, the effectiveness and feasibility for carers of adolescent patients, the optimal form of the intervention and long-term outcomes are largely unknown. We evaluated the efficacy and feasibility of the "Supporting Carers of Children and Adolescents with Eating Disorders in Austria" (SUCCEAT) workshop vs. online intervention. Main caregivers (parents) of adolescent patients with AN were randomly allocated to a workshop ( n = 50) or online version ( n = 50). Participants were compared to a non-randomised comparison group ( n = 49) receiving multi-family or systemic family therapy. Primary (General Health Questionnaire) and secondary outcomes were obtained at baseline, three-month and 12-month follow-up. Adherence was high for workshop and online participants (6.2 and 6.7 sessions completed out of 8). Intention-to-treat analyses revealed significant pre-post reductions in the primary outcome for the workshop (d = 0.87 (95%conficence interval (CI): 0.48; 1.26)) and online (d = 0.65 (95%CI: 0.31; 0.98)) intervention that were sustained at the 12-month follow-up. There was no significant group difference ( p = 0.473). Parental psychopathology and burden decreased and caregiver skills increased in all groups; the improvement of caregiver skills was significantly higher in SUCCEAT participants than in the comparison group. Online interventions for parents of adolescents with AN were equally effective as workshops. The improvements remained stable over time.
Given the vulnerability of the child psychiatric population, this study examined whether parenting a child referred to a child and adolescent psychiatry department leads to a higher risk of physical child abuse and if that risk is associated with a specific child psychopathology. The clinical sample consisted of caregivers with a six-to-11-year-old child who consulted child and adolescent psychiatry for a psychiatric assessment. The Dutch Child Abuse Potential Inventory (CAPI), socio-demographic data and child psychiatric diagnosis were collected from 59 caregivers of 59 children. Ten per cent of the sample obtained an Abuse scale score indicative of a potential risk for physically maltreating their child. Compared to a non-clinical sample, this study showed a two and a half times higher risk potential for physical child abuse in caregivers with children referred to child and adolescent psychiatry. The elevated risk was not associated with a specific child psychiatric diagnosis. The caregivers at risk were more unhappy and experienced more problems with their child, their family and with others. Results support the need for implementing a standard risk assessment for physical child abuse in a child psychiatric setting.
Objective: Caregivers of young children with chronic illnesses are at high risk for elevated levels of stress and mental health symptoms. This study examined stress and mental health symptoms as well as the socioeconomic status (SES) and home environments of a cohort of caregivers of infants and toddlers with sickle cell disease (SCD).
Methods: Forty-two caregivers of infants and toddlers (aged 1-34 months) with SCD completed the Brief Symptom Inventory (BSI) and Parent Stress Index (PSI). The Home Observation for Measurement of the Environment (HOME) was used to assess family living environments.
Results: Compared to test norms, caregivers reported high levels of situational/demographic life stress [mean difference (MD) 5.7, p = .003] and child distractibility/hyperactivity (MD 3.62, p = .001) on the PSI. However, no significant differences in psychological symptoms of distress were noted on the BSI. Caregivers scored significantly lower than norms on PSI subdomains of acceptability (MD -1.88, p = .03), competence (MD -3.11, p = .002), depression (MD -3.94, p < .001), and the overall parent domain (MD -12.55, p = .005). Significant correlations were found between PSI scores and the HOME and between SES and the HOME.
Conclusion: Caregivers of infants and toddlers with SCD experience elevated levels of life stress but, in turn, endorse high acceptance of their child and self-competence in parenting. Although life stress may be high in this population, symptoms of psychological distress were not identified. Caregivers reporting elevated life and illness-specific stressors may benefit from environmental supports and interventions.
Objective: To quantify psychosocial risk in family caregivers of children with medical complexity using the Psychosocial Assessment Tool (PAT) and to investigate potential contributing sociodemographic factors.
Design: Cross-sectional study.
Setting: Family caregivers completed questionnaires during long-term ventilation and complex care clinic visits at The Hospital for Sick Children, Toronto, Ontario, Canada.; Patients: A total of 136 family caregivers of children with medical complexity completed the PAT questionnaires from 30 June 2017 through 23 August 2017.
Main Outcome Measures: Mean PAT scores in family caregivers of children with medical complexity. Caregivers were stratified as 'Universal' low risk, 'Targeted' intermediate risk or 'Clinical' high risk. The effect of sociodemographic variables on overall PAT scores was also examined using multiple linear regression analysis. Comparisons with previous paediatric studies were made using T-test statistics.
Results: 136 (103 females (76%)) family caregivers completed the study. Mean PAT score was 1.17 (SD=0.74), indicative of 'Targeted' intermediate risk. Sixty-one (45%) caregivers were classified as Universal risk, 60 (44%) as Targeted risk and 15 (11%) as Clinical risk. Multiple linear regression analysis revealed an overall significant model (p=0.04); however, no particular sociodemographic factor was a significant predictor of total PAT scores.
Conclusion: Family caregivers of children with medical complexity report PAT scores among the highest of all previously studied paediatric populations. These caregivers experience significant psychosocial risk, demonstrated by larger proportions of caregivers in the highest-risk Clinical category.
Objective: Several studies have shown that spiritual/religious beliefs are associated with mental health and quality of life. However, so far, no study assessed the relationship between spiritual/religious coping (SRC) and depressive symptoms in family caregivers (FCs) of pediatric cancer patients, particularly in Latin America. This study aimed to investigate whether Positive and Negative SRC strategies are associated with depressive symptoms in FCs of pediatric cancer patients in Brazil.
Methods: We conducted a cross-sectional study comprising 77 FCs of pediatric cancer patients from one Brazilian Pediatric Oncology Institute. Spiritual/religious coping was assessed using the Brief SRC scale, and depressive symptoms were evaluated by the Beck Depression Inventory. Multiple regression models were performed to identify factors associated with SRC of FCs and their depressive symptoms.
Results: In the unadjusted linear regression models, depressive symptoms were positively associated with Negative SRC (B = 0.401; P < .001; Adjusted R 2 = 16.1%) but not with Positive SRC (B = 0.111; P = .334). After adjusting for socio-demographics, religious practice/faith, and health, Negative SRC remained associated with depressive symptoms (B = 3.56; P = .01; Adjusted R 2 = 37.8%). In the logistic regression models, depressive symptoms were positively associated with Negative SRC (OR = 3.68; 95% CI, 1.46-9.25; P = .006), but not with Positive SRC (OR = 1.49; 95% CI, .69-3.22; P = .309). After adjustments, Negative SRC remained significant (OR = 4.01; 95% CI, 1.21-13.33; P = .023).
Conclusions: Negative SRC was associated with depressive symptoms in FCs of pediatric cancer patients. Health professionals must be aware of the use of Negative SRC strategies in oncology care. (Copyright © 2018 John Wiley & Sons, Ltd.)
Objective: The role of family and caregiver accommodation is a well-defined maintenance factor for anxiety disorders and OCD. Family accommodation for patients with eating disorders is beginning to be described and characterized, but gaps in the literature remain. The current project compares levels of accommodation in families of those with anorexia nervosa (AN) to those with avoidant/restrictive food intake disorder (ARFID). It additionally establishes whether accommodation changes over the course of treatment and the extent to which these changes are related to changes in eating disorder pathology.
Methods: A total of 39 adolescents with ARFID and 59 with AN presenting to a partial hospitalization program were included, with measures completed at intake and discharge.
Results: Caregivers of adolescents with AN and those with ARFID reported similar levels of accommodation, with the exception of the Reassurance Seeking subscale of the Accommodation and Enabling Scale for Eating Disorders (AESED). Additionally, accommodation decreased significantly from intake to discharge for both patient groups. Intake AESED scores were also significantly related to caregiver distress, and changes in AESED scores were related to decreases in relevant eating disorder psychopathology for both groups.;
Conclusions: The results of the current study highlight the importance of considering family accommodation for ARFID patients and point to the need for future research to capture changes in accommodation over the course of treatment in relation to the delivery of evidence-based interventions and subsequent changes in ED symptoms. (© 2020 Eating Disorders Association and John Wiley & Sons Ltd.)
A key challenge facing the mental health field is connecting children and families to services when symptoms first appear. Multiple barriers inhibit timely access to treatment, and interventions to resolve barriers to care are not common among health and social care organisations. To address this research-to-practice gap this study undertook a scoping review of the empirical literature aimed at identifying key factors in the social ecology of families which influence family engagement with child and adolescent mental health services, then identifying and describing models of intervention designed to help facilitate access to care. Forty studies published between 1 January 2000 and 28 February 2019 were reviewed. Key factors associated with child and adolescent mental health service engagement included family attitudes towards mental illness and help seeking, the flexibility and availability of needed services, community attitudes and stigma surrounding mental illness and mental health treatment, and the degree of coordination and integration across systems of health and social care. Models of intervention to facilitate engagement with mental health services included family outreach, telephone and digital health strategies, and integrated care approaches. Empirical support is strongest for family outreach and integrated care, although telephone and digital health strategies are underexplored with children and families and a potentially promising avenue for future research. To support family engagement with child and adolescent mental health services health and social care organisations should be prepared to identify barriers in their local practice settings and integrate efficacious engagement approaches into their continuum of available services.
Assistance for distressed caregivers can indirectly facilitate recovery of the people being cared for, yet how resilience, hope, and social support mediate between caregiving burden and adjustment outcomes is unclear. A structural equation model was constructed based on data from a cross-sectional survey of 324 caregivers of children and adolescents with schizophrenia using multidimensional caregiver burden inventory, Connor-Davidson resilience scale, Herth hope index, perceived social support scale, distress management screening measure, and positive aspects of caregiving instruments. On distress, caregiving burden had a relatively large direct effect, and an indirect effect, mainly mediated by resilience. Resilience had a greater effect than social support or hope on distress. On positive aspects of caregiving (PAC), caregiving burden had only an indirect effect, primarily via the processes from social support and resilience to hope. Hope had a significant direct effect, while resilience and support had moderate indirect effects on PAC via hope. Resilience is an important mediator between caregiving burden and distress, with a greatest effect. Resilience, hope, and social support all mediated between caregiving burden and PAC, with hope having a greatest effect. Reducing the care burden may greatly help to relieve caregiver distress. Providing needed social support, encouraging caregivers to proactively utilize the support, and enhancing resilient coping skills will be helpful in developing resilience and mitigating distress. Health professionals should assess and ameliorate burden, be particularly aware of caregiver hopes, provide formal support, and encourage informal support to promote PAC. (© 2019 Australian College of Mental Health Nurses Inc.)
Patients and families affected by various medical conditions report experiencing health-related stigma, which contributes to detrimental physical, psychological, and social outcomes. Sickle cell disease (SCD) is a genetic disorder that affects 89,000 individuals in the United States and is often associated with negative stereotypes and incorrect assumptions. The present study explored the perception of stigma as reported by caregivers of adolescents with SCD. Focus groups were conducted with 20 caregivers of patients with SCD. Focus groups were audio recorded and transcribed. The data were coded independently by two authors, and then reviewed conjointly until consensus was reached. Caregivers reported the perception of stigma in academic, medical, community, and family settings. They also reported internalized stigma including negative feelings toward having a child with SCD, feeling upset with others, and seeing negative emotions in their child due to SCD. Caregivers reported a general lack of knowledge about SCD across settings. These results demonstrated that stigma may affect individuals with SCD across multiple settings. These results also highlighted areas for intervention, with a focus on increasing communication and education toward medical providers, schools, and communities. Interventions can utilize technology, social media, and advertisement campaigns. Additionally, support groups for patients with SCD may help decrease stigma and validate patients' experiences.
Objective: In current practice, treatment as usual (TAU) for suicidal adolescents includes evaluation, with little or no intervention provided in the emergency department (ED), and disposition, usually to an inpatient psychiatry unit. The family-based crisis intervention (FBCI) is an emergency psychiatry intervention designed to sufficiently stabilize suicidal adolescents within a single ED visit so that they may return home safely with their families. The objective of this article is to report efficacy outcomes related to FBCI for suicidal adolescents and their families.
Methods: A total of 142 suicidal adolescents (age, 13-18 years) and their families presenting for psychiatric evaluation to a large pediatric ED were randomized to receive FBCI or TAU. Patients and caregivers completed self-report measures of suicidality, family empowerment, and satisfaction with care provided at pretest, posttest, and 3 follow-up time points over a 1-month period.
Results: Patients randomized to FBCI were significantly more likely to be discharged home with outpatient follow-up care compared with their TAU counterparts (P < 0.001). Families randomized to the FBCI condition reported significantly higher levels of family empowerment and client satisfaction with care at posttest compared with their TAU counterparts. Gains were maintained over the follow-up period. No completed suicides were reported during the study period in either condition.
Conclusions: Family-based crisis intervention is a model of care for suicidal adolescents that may be a viable alternative to traditional ED care that involves inpatient psychiatric hospitalization.
Background: Anxiety is considered a 'frequent' feature in the clinical criteria for Angelman syndrome; however, the nature and severity of anxiety symptoms have not been well characterised in this population. Anxiety behaviours, especially in response to separation from a preferred caregiver, have been described clinically but have not yet been explored empirically.
Method: This study used a combination of standardised and clinician-derived survey items to assess the frequency, nature and severity of behaviours associated with anxiety and separation distress in 100 individuals with Angelman syndrome. Family (e.g. income and maternal education) and individual (e.g. age, sex, genetic subtype, sleep difficulties and aggressive behaviours) variables were also gathered to assess possible predictors of higher anxiety levels. Approximately half of the sample was seen in clinic and assessed with standardised measures of development and daily functioning, allowing for an additional exploration of the association between anxiety symptoms and extent of cognitive impairment.
Results: Anxiety concerns were reported in 40% of the sample, almost 70% were reported to have a preferred caregiver and over half displayed distress when separated from that caregiver. Individuals with the deletion subtype and individuals who are younger were less likely to have anxiety behaviours. Sleep difficulties and aggressive behaviour consistently significantly predicted total anxiety, the latter suggesting a need for future studies to tease apart differences between anxiety and aggression or anger in this population.
Conclusions: Anxiety concerns, especially separation distress, are common in individuals with Angelman syndrome and represent an area of unmet need for this population.
Objective: The death of a child has been associated with adverse parental outcomes, including a heightened risk for psychological distress, poor physical health, loss of employment income, and diminished psychosocial well-being. Psychosocial standards of care for centers serving pediatric cancer patients recommend maintaining at least one meaningful contact between the healthcare team and bereaved parents to identify families at risk for negative psychosocial sequelae and to provide resources for bereavement support. This study assessed how this standard is being implemented in current healthcare and palliative care practices, as well as barriers to its implementation.
Method: Experts in the field of pediatric palliative care and oncology created a survey that was posted with review and permission on four listservs. The survey inquired about pediatric palliative and bereavement program characteristics, as well as challenges and barriers to implementation of the published standards of care.
Result: The majority of participants (N = 100) self-reported as palliative care physicians (51%), followed by oncologists (19%). Although 59% of staff reported that their center often or always deliver bereavement care after a child's death, approximately two-thirds reported having no policy for the oncology team to routinely assess bereavement needs. Inconsistent types of bereavement services and varying duration of care was common. Twenty-eight percent of participants indicated that their center has no systematic contact with bereaved families after the child's death. Among centers where contacts are made, the person who calls the bereaved parent is unknown to the family in 30% of cases. Few centers (5%) use a bereavement screening or assessment tool.
Significance of results: Lack of routine assessment of bereavement needs, inconsistent duration of bereavement care, and tremendous variability in bereavement services suggest more work is needed to promote standardized, policy-driven bereavement care. The data shed light on multiple areas and opportunities for improvement.
This was the first study to examine the experience of parents who discover their child was living with anorexia nervosa (AN), thus fulfilling a critical gap in the eating disorder literature. Gadamerian hermeneutic inquiry was the guiding philosophy and method used to investigate this topic. Dialogues with parents revealed the ambiguity inherent within discovery; the isolation, betrayal, and loss felt by parents; and the complicated family dynamics occurring during the process of discovering one's child has AN. As such, when discoveries are made, parents play a vital role in the development and functioning of the family's response to the situation. This research offers health care providers a better understanding of the difficult times parents and caregivers experience when discovering their child has AN.
This was the first study to examine the experience of parents who discover their child was living with anorexia nervosa (AN), thus fulfilling a critical gap in the eating disorder literature. Gadamerian hermeneutic inquiry was the guiding philosophy and method used to investigate this topic. Dialogues with parents revealed the ambiguity inherent within discovery; the isolation, betrayal, and loss felt by parents; and the complicated family dynamics occurring during the process of discovering one's child has AN. As such, when discoveries are made, parents play a vital role in the development and functioning of the family's response to the situation. This research offers health care providers a better understanding of the difficult times parents and caregivers experience when discovering their child has AN.
HIV/AIDS-related (HAR) stigma is still a prevalent problem in Sub-Saharan Africa, and has been found to be related to mental health of HIV-positive individuals. However, no studies in the Sub-Saharan African context have yet examined the relationship between HAR stigma and mental health among HIV-negative, HIV-affected adults and families; nor have any studies in this context yet examined stigma as an ecological construct predicting mental health outcomes through supra-individual (setting level) and individual levels of influence. Multilevel modeling was used to examine multilevel, ecological relationships between HAR stigma and mental health among child and caregiver pairs from a systematic, community-representative sample of 508 HIV-affected households nested within 24 communities in KwaZulu-Natal, South Africa. Two distinct dimensions of HAR stigma were measured: individual stigmatizing attitudes, and perceptions of community normative stigma. Findings suggest that individual-level HAR stigma significantly predicts individual mental health (depression and anxiety) among HIV-affected adults; and that community-level HAR stigma significantly predicts both individual-level mental health outcomes (anxiety) among HIV-affected adults, and mental health outcomes (PTSD and externalizing behavior scores) among HIV-affected children. Differentiated patterns of relationships were found using the two different stigma measures. These findings of unique relationships identified when utilizing two conceptually distinct stigma measures, at two levels of analysis (individual and community) suggest that HAR stigma in this context should be conceptualized as a multilevel, multidimensional construct. These findings have important implications both for mental health interventions and for interventions to reduce HAR stigma in this context. (© 2018 Society for Community Research and Action.)
Eating disorders are serious mental health conditions that commonly begin in adolescence. Multi-family therapy (MFT) is recommended for young people with anorexia, but to date the majority of research on the effectiveness of this intervention has been conducted in highly specialist eating disorder (ED) services. In England there is a national transformation program that aims to develop specialist community ED services for children and young people. The current study aimed to explore whether MFT can be effectively implemented in a newly developed community ED service in the Southwest of England. Following one pilot MFT group, focus groups were conducted with caregivers and MFT facilitators to qualitatively explore how they experienced MFT. Results showed that MFT is valued by both service users and clinicians in community ED settings, but there are challenges associated with providing MFT in this context. Guidance for meeting these challenges is provided.
Objective: To review the literature regarding the effects of caregiver depression on childhood asthma and integrate the findings into a multilevel model of pathways by which these effects occur to further the understanding of the complex biopsychosocial nature of childhood asthma and the key role that is played by caregiver depression.
Data Sources: PubMed was searched for articles published from 2007 to the present (10-year search), and Google Scholar was searched for articles published in 2017 and 2018 to identify the most recent publications.
Study Selections: Studies selected were recent, empirical, or meta-analytic, conducted in humans, and had specific relevance to one or more of the identified pathways. Articles published before 2007 were included if deemed essential because they addressed key pathways, for which there were no more recent articles.;
Results: Review of the literature substantiates that caregiver depression plays a key role in the socioeconomic, familial, psychological, and biological cascade of effects on childhood asthma. Childhood asthma outcomes are affected indirectly by socioeconomic status and family stress mediated by caregiver depression, which affects disease management, and/or stress and depression in the child, which, in turn, affect asthma through alterations in immune modulation and autonomic regulation.
Conclusion: Findings indicate that future research should concentrate on mediators and moderators to further clarify the complex interplay of these factors that affect childhood asthma. The findings also have substantial translational implications. Given that child stress and depression contribute to asthma disease activity and that treating caregiver depression improves child stress and depression, there is strong rationale for treating depressed caregivers of children with asthma as a component means of improving childhood asthma control.
Background: Pediatric obsessive-compulsive disorder (OCD) is associated with deleterious familial effects; caregivers are often enmeshed in the disorder and can experience considerable burden and decreased quality of life (QoL). Consequently, this study examined burden and QoL in caregivers of youth with OCD enrolled in an intensive outpatient or partial hospitalization program.
Method: The relationships between caregiver QoL and burden and the following variables were investigated: OCD symptom severity, functioning (youth functional impairment, general family functioning), family (family accommodation, parental relationship satisfaction, positive aspects of caregiving), and comorbid psychopathology (caregiver anxiety and depressive symptoms, youth internalizing and externalizing behaviors). Seventy-two child and caregiver dyads completed clinician- and self-rated questionnaires.
Results: Components of caregiver QoL correlated with caregiver-rated functional impairment, family accommodation, youth externalizing behaviors, and caregiver psychopathology. Aspects of caregiver burden correlated with child OCD symptom severity, functional impairment related to OCD, as well as caregiver and child comorbid psychopathology. Caregiver depressive symptoms predicted caregiver QoL, and caregiver depressive symptoms and child externalizing symptoms both predicted caregiver burden. Caregiver burden did not mediate the relationship between obsessive-compulsive symptom severity and caregiver QoL.
Conclusion: Ultimately, elucidating factors associated with increased caregiver burden and poorer QoL is pertinent for identifying at-risk families and developing targeted interventions.
The current study aimed to evaluate the status of anxiety among caregivers of children with epilepsy and examine the associated factors.A cross-sectional study was conducted in western China, which consecutively recruited children with epilepsy in 2018. The self-rating anxiety scale (SAS) was used to assess the status of anxiety among caregivers of children with epilepsy. We collected information about aspects of sociodemographic data, disease status, attitude of caregivers towards the disease and family conditions as independent variables, using multiple linear regression to analyze factors related to the status of anxiety among caregivers.A total of 334 participants were included in the study with a response rate of 95.4% (334/350). The mean age of children with epilepsy was 6.05 ± 4.11 years. 7.2% (24/334) of patients were newly diagnosed and 55.4% (185/334) of patients presented with generalized epilepsy. A total of 25.7% (86/334) of caregivers among children with epilepsy presented the symptom of anxiety, with the scores of SAS 44.31 ± 10.558. SAS scores were negatively correlated with the children's age (B = -0.141; standard error = 0.135; P = .008), attitude towards seizures (B = -0.153; standard error = 1.192; P = .004) and medical expenses payment (B = -0.169; standard error = 1.703; P = .002).Symptoms of anxiety are common among caregivers of children with epilepsy in western China. Healthcare providers should pay more attention to caregivers with younger children, difficult financial situation, and greater fear of seizures. Exploring mental health interventions for caregivers is important.
The purpose of the study was to evaluate sleep quality in the parents of children with epilepsy (CWE) as well as their symptoms of anxiety and depression in Southern China. A structured questionnaire, comprised of The State–Trait Anxiety Inventory (STAI), Center for Epidemiologic Studies Depression Scale (CES-D), and the Pittsburgh Sleep Quality Index (PSQI), was administered to parents of CWE (n = 234) in Xiangya Hospital and parents of healthy children (n = 230) during 2019–2020. The scores (Mean ± SD) of State Anxiety Inventory (S-AI) and Trait Anxiety Inventory (T-AI) among parents of CWE were 51.850 ± 11.380 and 48.201 ± 9.526, respectively, which were significantly higher than those of control group (37.172 ± 8.047 and 37.478 ± 7.314, respectively) (p < 0.001). Compared with 10.84% in parents of healthy children, 23.51% of parents of CWE had symptoms of depression (p < 0.001). The mean score of total PSQI among parents of CWE (6.944 ± 3.814) was statistically higher than that of parents of healthy children (5.039 ± 3.390) (p < 0.001). Moreover, anxiety and depression subscores among parents of infants with epilepsy were significantly higher than in other groups. The T-AI and CES-D could explain 43.9% of the variance (R2 = 0.444, F = 92.215, p < 0.001) on the PSQI. Our study showed more severe symptoms of anxiety and depression as well as poorer sleep quality among parents of CWE, especially in the infants group. In light of this information, more attention should be paid to early identification and intervention of symptoms of anxiety and depression in susceptible parents who are the main caregivers of their CWE.
• Anxiety, depression and poor sleep quality were found in parents of children with epilepsy, especially in the infant group.
• Low sleep quality may precede mood disturbance or develop as a result of them.
• Greater attention should be paid to the main care taker of sick child with epilepsy.
This is a qualitative evidence synthesis on the experiences of parents caring for their adult child with schizophrenia. The Joanna Briggs Methodology for systematic reviews guided the study and standard systematic review procedures were followed. Content analysis was used to synthesize findings from the five studies included into the following categories: ' Resources ,' ' Loss ,' ' Psychological Distress ,' ' Effects on Family ,' and ' Framing the Experience.' Findings suggest that parent caregivers struggle to navigate services and need greater support to protect their mental and physical health. From a research perspective, factors influencing parents' abilities to stay engaged in caregiving warrant further exploration.
Highlights
• Parent caregivers of adult children with schizophrenia experience significant losses related to their child and themselves.
• Navigating the mental health care system presents significant challenges to parent caregivers.
• Framing experiences in positive or meaningful ways can be helpful in coping with their care giving role.
• Parent caregivers ultimately require support in protecting their own mental and physical health.
Background: Intimate partners of patients with cancer often experience significant distress, but there is a lack of psychological interventions that specifically target this population. 'Resilient Caregivers' is a novel resilience-based intervention for distressed partner cancer caregivers. The intervention was developed according to a resilience framework focusing on meta-reflective skills, coping strategies and value clarification. Objectives: The aim of this study is to evaluate the effectiveness of this intervention in a randomised trial. Methods and analysis Eighty participants will be invited through the Oncology Department at Herlev Hospital, Denmark and randomised to either the intervention or usual care. Methods: Participants are eligible if they are partners (married or unmarried) of patients diagnosed with cancer and experience distress (>4 on the distress thermometer). 'Resilient Caregivers' consists of seven manualised group sessions (2.5 hours each), focusing on resilience in relation to being a partner caregiver of a patient with cancer. The primary outcome is symptoms of anxiety, while secondary outcomes include distress, depression, quality of life, sleep quality and resilience. Data will be collected at baseline, 3, 6 and 12 months follow-up using validated scales, and analysed using mixed models for repeated measures. Ethics and dissemination: This study will follow the ethical principles in the Declaration of Helsinki and has been reviewed by the Ethics Committee of the Capital Region of Denmark (Journal no. 18055373). Written informed consent will be obtained from all participants. Results will be reported through scientific peer-reviewed journals and relevant conferences.
Background: Informal caregivers are individuals who provide care for ill, frail, or otherwise dependent family members, siblings, or friends. Due to the caregiving demands, informal caregivers are known to experience negative mental health symptoms, such as stress or anxiety. Interventions based on Internet-based Cognitive Behavioral Therapy (ICBT) principles have been previously found to be effective for different populations and could also be considered as a plausible support option for informal caregivers. However, findings regarding effectiveness alone might not be sufficient for informing about the overall feasibility of the intervention. Objective: The aim of this process evaluation study was to evaluate the feasibility of a previously developed ICBT intervention for informal caregivers in Lithuania. More specifically, we evaluated the suitability of the intervention in relation to its content and delivery mode. Methods: Two studies were conducted. Study 1 consisted of participant evaluations of an 8-week, 8-module long therapist supported ICBT intervention. Evaluations for the Study 1 were retrieved from previously unused data, obtained from pilot testing of the intervention in which 63 informal caregivers took part. The evaluations contained of qualitative data (participant comments), as well as quantitative data (evaluations of each of the sessions). The Study 2 was an online stakeholder focus-group discussion conducted via Zoom. Eight stakeholders took part in the discussion, among whom there were social workers, medical professionals as well as individuals with caregiving experience themselves. Data were analyzed using descriptive statistics, thematic analysis, and data coding. Results: Results of the Study 1 showed that most of the pilot randomized controlled trial participants evaluated content and format of the intervention positively. These results were complemented by the findings in the Study 2, in which stakeholders evaluated the intervention as suitable and promising. In addition, stakeholders made certain suggestions for improving the intervention's usability for the informal caregivers. This included improving the instructions, providing with more guidance, and considering personalization options. Conclusion: The process evaluation helped to evaluate the feasibility of the ICBT intervention for informal caregivers in Lithuania from the two perspectives: users and stakeholders. Our findings suggest that the intervention is suitable for the target population.
Purpose: This study was aimed to examine the prevalence and factors associated with psychological distress among Saudi family caregivers. Design and Methods: This was a cross‐sectional, descriptive correlational study conducted on 163 participants. The Kessler Psychological Distress Scale‐6 was used to collect data. Bivariate and multivariate analyses were run in SPSS. Findings: Results indicated that psychological distress was significantly associated with employment status, education level, monthly money spent on caring, time spent on caregiving, and chronic disease type variables. Practice Implications: Implementing effective programs to raise family caregivers' understanding of psychological distress and improve their engagement in treatment is important.
Objective: Huntington's disease (HD) is a genetic neurodegenerative condition that is characterized by cognitive, motor, and psychiatric dysfunction. Objectives: The purpose of this study was to explore which disease characteristics influence caregiver burden in HD. Methods: Fifty participants with HD and 50 of their caregivers participated in the study at the University of South Florida. Participants were administered a neuropsychological battery, the Unified Huntington's Disease Rating Scale (UHDRS) motor exam, and the Frontal Systems Behavior Scale (FrSBe) self-report. Caregivers completed the Caregiving Appraisal Scale and the FrSBe family-report. Results: There were significant correlations between caregiver burden and caregiver age and sex, UHDRS motor scores, cognitive functioning, and self and caregiver-reported FrSBe scores. The significant variables were entered into a regression model and explained 63.1% of the variance in caregiver burden scores. Caregiver age, cognitive functioning, and caregiverreported FrSBe scores continued to be significant predictors of caregiver burden, whereas the other variables were no longer significant. Conclusions: There were significant relationships between caregiver burden, cognitive functioning, and frontally mediated behaviors, but not motor scores. The results suggest that possible interventions for caregiversmay include education to caregivers on howto cope with apathy/executive dysfunction and cognitive decline. Caregiver agewas associated with burden, with younger age being associated with increased burden when controlling for symptom severity. This has implications for this population in that HD typically has a younger age of onset than other neurodegenerative diseases and therefore, these caregivers may be particularly at risk for caregiver burden.
Objectives: This study examines the post-traumatic growth (PTG) of bereaved families who care for cancer patients and related factors in Japan. Methods: Participants included 1298 members of bereaved families of cancer patients (aged 20 or older). An anonymous self-administered questionnaire on PTG, coping, and social support was mailed to 496 bereaved families who provided written informed consent. Results: Responses were obtained from 476 bereaved families; however, since 28 families had missing data, 448 were included for the analyses. The mean age of participants was 61.4 years: 69% women and 45% spouses. The average age of the deceased was 72.8 years old for men (59%). The PTG score of the bereaved families was higher for women than for men (p < 0.0001). Moreover, the Post-Traumatic Growth Inventory Score for those above 65 years of age was higher than of those below 65 years of age (p < 0.0001). A regression analysis confirmed that emotion-focused coping, problem-focused coping, relationship with the deceased, advanced age of bereaved families, and emotional support impacted PTG. Conclusion: The significance of the deceased for the bereaved, bereaved family members being older in age, emotion-focused coping, problem-focused coping, and emotional support suggest that these aspects are associated with psychological growth in terms of accepting the death of a loved one and moving forward. It is necessary to evaluate the relationship between the bereaved family and the deceased, the age and gender of the bereaved, coping behaviors, and support status and establish a higher quality bereaved family care system.
Background: Physical activity (PA) has been positively associated with health-related quality of life (HRQoL) among cancer patients and family caregivers. However, there has been no relevant research for patient-caregiver dyads. Methods: Path analysis, based on the actor–partner interdependence model (APIM), was used to examine the relationship between physical activity and health-related quality of life and explore the mediating role of emotional distress in 233 dyads. Results: In both patients and caregivers, physical activity had a direct positive effect on physical quality of life (QoL) but not on mental. There was a significant indirect effect of physical activity on health-related quality of life via emotional distress for both dyad members. Patients’ and caregivers’ confidence in fighting cancer was negatively associated with their own emotional distress. Caregivers’ confidence in fighting cancer was positively associated with their physical activity and also negatively associated with patients’ emotional distress. Conclusions: Physical activity may be considered as a possible behavioral and rehabilitation strategy for improving health-related quality of life in patient-caregiver dyads and reducing negative symptoms. Future research and intervention may consider cancer patient-family caregiver dyad as a unit of care.
Background and objectives: This study was conducted to determine and explain the relationship between the loneliness perceptions and well‐being of family caregivers of psychiatric patients. Methods: This cross‐sectional and descriptive study was conducted with the families of 141 individuals with mental illness, who were outpatients psychiatry clinic of a university hospital. Findings: There was a statistically significant moderate relationship between loneliness levels and well‐being subscales of the psychiatric patients' caregivers (p < 0.001). Practical implications: Mental health nurses should carefully evaluate the perception of loneliness of family caregivers when diagnosing the family and determining needs.
Background: Dementia care is largely provided by informal caregivers, which can present significant challenges and increase caregivers' burden. Humanoid socially assistive robots (SARs) have the potential to provide assistance, but evidence is missing. Objectives: The aim was to explore the psychosocial effects of Coach Pepper (humanoid SAR system "AMIGO" combined with a tablet PC-based dementia training) versus an exclusive tablet PC-based dementia training on informal caregivers of people with dementia living at home (as well as their experiences). Methods: A randomized controlled trial with a complementary qualitative part was performed (May 2019-March 2020). 32 informal caregivers of people with dementia living at home participated in the study. The intervention group received Coach Pepper and the control group received only the tablet-based dementia training. The duration of the intervention was three weeks per household. Data was collected at baseline and after the intervention by standardized questionnaires for caregiver burden (primary outcome), quality of life, depressive symptoms and affect. Additionally, interviews about caregivers' experiences were conducted in the intervention group. Results: Participants were on average 58.2 (±12.5) years old and predominantly female (68.8%). Quality of life, depressive symptoms and affect demonstrated no significant differences regarding between-group mean changes, neither did caregivers' burden, which showed decreasing tendencies of burden in the intervention and control group (Zarit Burden Interview, -2.7±8.7 vs. -4.4±6.4, p=0.2552). Qualitative findings revealed that participants had positive attitudes regarding Coach Pepper and experienced it as neutral in terms of burden. Some stated that Coach Pepper provided relief/more free time by entertaining the persons with dementia. However, some participants stated that they had to invest additional time until the person with dementia was able to engage with Coach Pepper and that its usability should be improved in certain areas (e.g., communication) to constitute more support for caregivers. Conclusions: Coach Pepper had no significant psychosocial effects on informal caregivers of people with dementia. Qualitative findings demonstrated the participants' positive attitudes but highlighted a need for improvement regarding its usability. This study contributes to the development/modification of Coach Pepper based on caregivers' needs in dementia care.
Background: To investigate whether health literacy (HL) among informal caregivers of breast cancer (BC) survivors is associated with patient psychological outcomes. Methods: We used data (n = 340 pairs) from baseline questionnaires administered in the MyHealth trial investigating nurse-led BC follow-up. All BC survivors and their invited caregivers were included immediately after completion of primary treatment. We performed multivariate regression analyses to examine the association between caregiver HL (nine dimensions as measured by the Health Literacy Questionnaire) as exposure and patient depression, anxiety, and health-related quality of life (HQoL) as outcomes. We further examined whether any association differed according to type of caregiver, patient HL, and patient activation (skill in managing one’s health). Results: Three dimensions, “ability to engage with providers” (β = − 0.2), “navigating the system” (β = − 0.2), and “understand health information” (β = − 0.2), were significantly associated with lower patient depression (p < 0.05), while four dimensions, “having sufficient information” (β = 0.3), “navigating the system” (β = 0.2), “find health information” (β = 0.2), and “understand health information” (β = 0.2), were significantly associated with better patient HQoL (p < 0.05). No significant associations were found for anxiety. Patient HL and activation did not significantly modify the associations, while certain associations for depression were stronger in patients with non-partner caregivers. Conclusions: The HL of informal caregivers may play an important role in optimizing psychological outcomes in cancer survivors. Implications for Cancer Survivors: Involving informal caregivers, who can provide support related to health information and services, may be beneficial for the psychological well-being of cancer survivors.
Background: Informal caregivers are a particularly vulnerable population at risk for adverse health outcomes. Likewise, there are many scales available assessing individual caregiver burden and stress. Recently, resilience in caregivers gained increasing interest and scales started to assess resilience factors as well. Drawing on a homeostatic model, we developed a scale assessing both caregivers' stress and resilience factors. We propose four scales, two covering stress and two covering resilience factors, in addition to a sociodemographic basic scale. Based on the stress:resilience ratio, the individual risk of adverse health outcomes and suggestions for interventions can be derived. Methods: A total of 291 informal caregivers filled in the ResQ-Care as part of a survey study conducted during the second wave of the COVID-19 pandemic in Germany. Exploratory factor analysis was performed. Validity analyses were examined by correlations with the Brief Resilience Scale (BRS), the Perceived Stress Scale (PSS-4) and the Geriatric Depression Scale (GDS-15). Results: The data fitted our proposed four-factor solution well, explaining 43.3% of the variance. Reliability of each scale was at least acceptable with Cronbach's α ≥0.67 and MacDonald's ω ≥0.68 for all scales. The two strain scales weighed more than the resilience scales and explained 65.6% of the variance. Convergent and discriminant validity was confirmed for the BRS and PSS-4, whereas the GDS-15 correlation pattern was counterintuitive. Conclusion: The factor structure of the ResQ-Care scale was confirmed, with good indications of reliability and validity. Inconsistent correlations of the scales with the GDS-15 might be due to a reduced validity of GDS-15 assessment during the COVID-19 lockdown.
Background: Caregivers of cancer patients are at high risk of experiencing impairments in terms of anxiety, depression and quality of life. Objectives: This study examines the mediation capacity that perceived emotional support can have after diagnosis and six months later between depression and anxiety after diagnosis and quality of life in informal caregivers of cancer patients. Design: A sample of 67 informal caregivers of cancer patients was used. This study is longitudinal, ex post facto prospective, with convenience sampling. Methods: Participants completed the Medical Outcomes Study 36-Item Short Form (SF-36), the Hospital Anxiety and Depression Scale (HADS) and the Berlin Social Support Scale (BSSS) and a sociodemographic questionnaire. Data were collected between March 2017 and November 2018. Results: Spearman's correlation analysis showed that anxiety, depression and perceived emotional support were related to quality of life. Conclusions: The mediation analysis showed that the relationship between depression after diagnosis and quality of life six months later was mediated by perceived emotional support.
Background: The purpose of this study was to examine the association of patient delirium in the intensive care unit (ICU) with patterns of anxiety symptoms in family caregivers when delirium was determined by clinical assessment and family-administered delirium detection. Methods: In this cross-sectional study, consecutive adult patients anticipated to remain in the ICU for longer than 24 h were eligible for participation given at least one present family caregiver (e.g., spouse, friend) provided informed consent (to be enrolled as a dyad) and were eligible for delirium detection (i.e., Richmond Agitation-Sedation Scale score ≥ − 3). Generalized Anxiety Disorder-7 (GAD-7) was used to assess self-reported symptoms of anxiety. Clinical assessment (Confusion Assessment Method for ICU, CAM-ICU) and family-administered delirium detection (Sour Seven) were completed once daily for up to five days. Results: We included 147 family caregivers; the mean age was 54.3 years (standard deviation [SD] 14.3 years) and 74% (n = 129) were female. Fifty (34% [95% confidence interval [CI] 26.4–42.2]) caregivers experienced clinically significant symptoms of anxiety (median GAD-7 score 16.0 [interquartile range 6]). The most prevalent symptoms of anxiety were “Feeling nervous, anxious or on edge” (96.0% [95%CI 85.2–99.0]); “Not being able to stop or control worrying” (88.0% [95%CI 75.6–94.5]; “Worrying too much about different things” and “Feeling afraid as if something awful might happen” (84.0% [95%CI 71.0–91.8], for both). Family caregivers of critically ill adults with delirium were significantly more likely to report “Worrying too much about different things” more than half of the time (CAM-ICU, Odds Ratio [OR] 2.27 [95%CI 1.04–4.91]; Sour Seven, OR 2.28 [95%CI 1.00–5.23]). Conclusions: Family caregivers of critically ill adults with delirium frequently experience clinically significant anxiety and are significantly more likely to report frequently worrying too much about different things. Future work is needed to develop mental health interventions for the diversity of anxiety symptoms experienced by family members of critically ill patients. Trial registration: This study is registered on ClinicalTrials.gov (https://clinicaltrials.gov/ct2/show/NCT03379129).
Background: Unpaid caregivers of adults play critical roles in health care systems by providing care to older adults and those with chronic conditions. The COVID-19 pandemic has heightened caregiving needs, forcing some into caregiving roles and disrupting others. Objectives: We sought to estimate the prevalence of and identify factors associated with adverse mental health symptoms, substance use, and suicidal ideation amongst unpaid caregivers of adults versus non-caregivers. Methods: During June 24-30, 2020, surveys were administered to U.S. adults. Quota sampling and survey weighting were implemented to improve sample representativeness of age, gender, and race/ethnicity. Results: Of 9,896 eligible invited adults, 5,412 (54.7%) completed surveys and 5,011 (92.6%) met screening criteria and were analyzed, including 1,362 (27.2%) caregivers. Caregivers had higher adverse mental health symptom prevalences than non-caregivers, including suicidal ideation (33.4% vs 3.7%, p < 0.0001). Symptoms were more common among caregivers who were young vs older adults (e.g., aged 18–24 vs ≥65 years, aPR 2.75, 95% CI 1.95–3.88, p < 0.0001) and with moderate and high vs low Caregiver Intensity Index scores (2.31, 1.65–3.23; 2.81, 2.00–3.94; both p < 0.0001). Limitations: Self-report data may be subject to recall, response, and social desirability biases; unpaid caregivers were self-identified; child caregiving roles were not assessed; and internet-based survey samples might not fully represent the U.S. population. Conclusions: Caregivers experienced disproportionately high levels of adverse mental health symptoms. Younger caregivers and those with higher caregiving intensity were disproportionately affected. Increased visibility of and access to mental health care resources are urgently needed to address mental health challenges of caregiving.
Background: Substantial and important benefits flow to all stakeholders, including the service user, when mental health services meaningfully engage with carers and family members. Government policies around the world clearly supports inclusiveness however health service engagement with family and carers remains sporadic, possibly because how best to engage is unclear. A synthesis of currently used surveys, relevant research and audit tools indicates seven core ways that families and carers might be engaged by health services. This study sought to confirm, from the perspective of family and carers, the importance of these seven health service engagement practices. Methods: In a mixed method online survey, 134 family members and carers were asked what they received and what they wanted from mental health services. Participants also quantified the importance of each of the seven core practices on a 0–100 point likert scale. Results: Almost 250 verbatim responses were deductively matched against the seven themes, with additional unaligned responses inductively categorised. The findings triangulate with multiple diverse literatures to confirm seven fundamental engagement practices that carers and family want from health services. Conceptually, the seven practices are represented by two broad overarching practice themes of (i) meeting the needs of the family member and (ii) addressing the needs of the service user. Conclusion: Policy, clinical practice, training and future research might encompass the seven core practices along with consideration of the intertwined relationship of family, carers and the service user suggested by the two broader concepts.
Background: Consumption of fruits and vegetables is correlated with improved mental wellbeing. Although this growing body of research has been recognized by researchers and clinicians in high-income countries, fewer studies examining this relationship have been conducted in low- and middle-income settings. Objectives: In this study, we sought to estimate the association between fruit and vegetable intake and symptoms of depression and anxiety. Methods: We conducted a cross-sectional study among 242 family caregivers of people with dementia in southwestern Uganda. Fruit and vegetable intake in the past week was measured with a food frequency questionnaire. Depression and anxiety were assessed using the depression and anxiety subscales of the 42-item Depression, Anxiety and Stress Scales. Multivariable regression models were used to estimate the associations between fruits and vegetable consumption and depression and anxiety, adjusting for caregiving burden and other potential confounders. Results: Depression symptom severity was negatively associated with consumption of jackfruits (b =-4.68; 95% confidence interval [CI], -8.96 to -0.39), green leafy vegetables (b =-14.1; 95% CI, -18.0 to -10.1), root vegetables (b =-14.0; 95% CI, -19.5 to -8.63), and other vegetables (b =-14.8; 95% CI, -19.3 to -10.3), and frequent consumption of vegetables (b =-1.91; 95% CI, -3.77 to -0.04). Anxiety symptom severity was negatively associated with consumption of green leafy vegetables (b =-12.2; 95% CI, -16.0 to -8.46), root vegetables (b=-12.6; 95% CI, -17.5 to -7.58), and other vegetables (b =-12.7; 95% CI, -17.0 to -8.40), and frequent consumption of vegetables (b =-2.07; 95% CI, -3.84 to -0.29). Conclusions: Our results suggest that fruit and vegetable consumption is associated with reduced depression and anxiety symptoms.
Objective: The current study examined the roles of constructive and dysfunctional problem-solving strategies in the relationships between illness uncertainty and adjustment outcomes (i.e., anxious, depressive, and posttraumatic stress symptoms) in caregivers of children newly diagnosed with cancer. Methods: Two hundred thirty-eight caregivers of children (0-19 years of age) newly diagnosed with cancer (2-14 weeks since diagnosis) completed measures of illness uncertainty, problem-solving strategies, and symptoms of anxiety, depression, and posttraumatic stress. Results: A mediation model path analysis assessed constructive and dysfunctional problem-solving strategies as mediators between illness uncertainty and caregiver anxious, depressive, and posttraumatic stress symptoms. Dysfunctional problem-solving scores partially mediated the relationships between illness uncertainty and anxious, depressive, and posttraumatic stress symptoms. Constructive problem-solving scores did not mediate these relationships. Conclusions: The current findings suggest that illness uncertainty and dysfunctional problem-solving strategies, but not constructive problem-solving strategies, may play a key role in the adjustment of caregivers of children newly diagnosed with cancer. Interventions aimed at managing illness uncertainty and mitigating the impact of dysfunctional problem-solving strategies may promote psychological adjustment.
Objective: Family-centered health care requires successful communication between patient, family caregivers, and healthcare providers. Among all providers, physicians are most likely to interact with caregivers. Using the Family Caregiver Communication Typology, this study examined perceived communication self-efficacy with physicians among four types of caregivers: Manager, Partner, Carrier, and Lone. Method: A cross-sectional online survey included the Family Communication Typology Tool, Communication Perceived Self-Efficacy Scale, the Caregiver Quality of Life-Revised Index, and the Generalized Anxiety Disorder (GAD-2) questionnaire. Results: An online survey of 220 family caregivers currently caring for an adult family member revealed significant differences in communication self-efficacy among family caregiver communication types, revealing that Partner caregivers have the highest perceived communication self-efficacy, and that for some caregiver types, higher perceived communication self-efficacy is associated with certain quality of life dimensions. Conclusions: Differences in communication self-efficacy with physicians among the four caregiver communication types (Manager, Partner, Carrier, and Lone) provide further evidence that the typology represents variance in caregiver communication abilities. Development of future medical curricula targeting communication skill training should include an overview of the typology and communication strategies as these may increase effective communication between physicians and caregivers.
Objectives: Often people with spinal cord injury (SCI) require help from their caregivers to carry out activities of daily living. Such assistance may affect caregiver quality of life (QoL). This study investigates the QoL and its associated risk factors among caregivers of people with SCI to find possible ways to increase their QoL. Material and Method: A convenience sample of 135 Iranian caregivers of people with SCI participated in a cross-sectional study from the Brain and Spinal Injury Repair Research Center of Tehran (BASIR), Iran, from June 2018 to October 2019. The World Health Organization's Quality of Life Questionnaire (WHOQoL-BREF), the Beck Depression Inventory-II (BDI-II), the Caregiver Burden Scale (CBS), and a demographic questionnaire were administered. Hierarchical multiple linear regression analysis was then applied to identify risk factors associated with caregiver QoL. Results: Moderate to highly significant negative correlations were observed between all domains of the WHOQoL scale and subscales of the CBS and the BDI-II. After controlling for demographic and clinical variables, depression, burden, and level of injury were found to predict caregiver QoL significantly. Furthermore, QoL was lower in caregivers of people with quadriplegia than paraplegia (p<0.05). Conclusions: The level of injury, self-perceived caregiver burden, and depression are associated with QoL for the caregivers of people with SCI. A holistic approach incorporating caregiver training, psychological interventions, and adequate support may enable better QoL for these caregivers.
Background: Caregivers of children with disabilities might face high risk of anxiety, but the specific influencing factors may be different between parents and grandparents. Objective: This study is to explore the influencing modifiable factors from personal and environmental dimensions, so as to provide practical reference for effectively preventing and alleviating anxiety of this population. Methods: A total of 504 primary caregivers were investigated in Shanghai, China, of which 496 parents and grandparents were included in the analysis. Risk of anxiety was measured by the Generalized Anxiety Disorder 7-item (GAD-7) Scale. Descriptive statistics, univariate analysis, and multivariable logistic regression were performed to describe the personal and environmental characteristics of parents and grandparents, risk of anxiety, and identify the significant factors. Results: 35.1% of the total caregivers had the risk of anxiety, parents (35.8%) were slightly more anxious than grandparents (33.1%). Among parents, children's stable emotion (AOR=0.263, 95% CI=0.113, 0.611), higher household income (AOR=0.664; 95% CI=0.519, 0.850), owning a house (AOR=0.326; 95% CI=0.174, 0.610), and better barrier-free construction (AOR=0.400; 95% CI=0.170, 0.941) were associated with lower odds of anxiety. As for grandparents, significant association was merely found in caregiving time (AOR=2.936; 95% CI=1.064, 8.107). Limitations: Given the cross-sectional design, we would not infer causal relationships. Conclusions: Anxiety among family caregivers of children with disabilities was not encouraging and need to be urgently concerned. To reach optimal efficiency, intergenerational differences should be considered when health care providers and policy makers taking measures to facilitate the mental health of this population.
Background: Relatives are often involved in caregiving for patients with advanced cancer and carry a heavy burden. Self-care and resilience might be beneficial to enhance their wellbeing and burden-bearing capacity. Objectives: This study assessed the engagement in self-care and resilience in relatives of patients with advanced cancer and its association with their caregiver burden. Methods: This study analyzed baseline data of the eQuiPe study, a prospective longitudinal, multicenter, observational study on quality of care and life of patients with advanced cancer and their relatives in which self-care (Self-care Practices Scale), resilience (Connor-Davidson Resilience Scale), and caregiver burden (Zarit Burden Interview (ZBI)) of relatives were included. Their scores were compared with a gender- and age-matched normative population. Multivariable logistic regression analysis was performed to assess the association between self-care and resilience with caregiver burden. Results: Most of the 746 relatives were the patient’s partner (78%) and 54% reported to be an informal caregiver of the patient. The median hours of caregiving a week for all relatives was 15 and 11% experienced high caregiver burden (ZBI > 20). Relatives who reported a high caregiver burden engaged less often in self-care (OR =.87) and were less resilient (OR =.76) compared to relatives with low/medium caregiver burden. Relatives with high caregiver burden were younger (OR =.96), highly educated (OR = 2.08), often reported to be an informal caregiver of the patient (OR = 2.24), and were less well informed about the importance of self-care (OR =.39). Conclusion: A significant number of relatives of patients with advanced cancer experienced high caregiver burden. As more self-care and resilience were associated with lower experienced caregiver burden, creating awareness of the beneficial potential of self-care is important. Future studies should illuminate the causal relation. Trial registration number: NTR6584 (date of registration: 30 June 2017)
Objecives: The present study aimed to investigate the personal well-being and family distress of Italian caregivers during the lockdown. Methods: Five hundred sixty-five family caregivers and 638 age- and sex-matched noncaregivers completed a web-based survey. The following scales were administered to all participants: General Health Questionnaire-12 items (GHQ-12), Insomnia Severity Index (ISI), Brief Resilient Coping Scale (BRCS), and Family Distress Index (FDI). Caregivers were also asked to provide information about their family members with disabilities. Results: Individual and family distress, as well as insomnia, were significantly higher in caregivers than controls. Contrariwise, caregivers reported lower resilience levels. Multiple linear regression showed that distress was higher in caregivers living in Central and Southern Italy. Individual well-being was negatively predicted by low independence measured by the activities of daily living (ADL). Family distress was higher in households of psychiatric patients. Finally, low resilience levels appeared as the strongest predictors of both individual and family distress. Conclusions: The lockdown caused severe distress among caregivers and families of people with disabilities. Support networks for people with disabilities and their families are fundamental to prevent severe consequences from a psychological, social, and economical point of view.
Background: Family caregivers of patients receiving hemodialysis experience physical and psychological disorders. They are unfortunately neglected. Objectives: The aim of this study was to explain the psychological consequences for family caregivers of patients receiving hemodialysis. Methods: This qualitative inductive conventional content analysis research approach was conducted in Tehran, Iran. Nineteen hemodialysis patient caregivers were enrolled via purposive sampling. Data collection was conducted through in-depth and semi-structured interviews until reaching data saturation. All interviews were recorded, transcribed, imported into the Open Code Software, and analyzed using the Graneheim and Lundman methods. Results: The results included two main categories: (1) threats to the psychological integrity; (2) development of capabilities. The first main category comprised the sub-categories of “care-related negative feelings and emotions,” care-related stress and its behavioral impacts on care, “psychological disorders arising from care provision,” and “impaired quality and quantity of sleep.” The second main category comprised of the sub-categories of “care-related positive feelings and emotions” and “coping strategies.” Conclusions: The present study showed that though caring for hemodialysis patients threatens the caregiver’s psychological integrity, it provides the opportunity of development capabilities.
Objectives: To identify and describe caregiver profiles based on their psychosocial health characteristics over a 12-month period and transitions among these profiles, to determine if stroke rehabilitation use at 12 months post-stroke differed by caregiver profile transition patterns, and to investigate if caregiver profiles at 3 months post-stroke moderate the association of stroke rehabilitation use at 3 months and 12 months post-stroke after accounting for covariates. Methods: Latent profile transition analysis of caregiver psychosocial health with stroke rehabilitation use at 12 month post-stroke as outcome. Setting and Participants: A total of 149 stroke patient-caregiver dyads from the Singapore Stroke Study. Methods: Cross-sectional latent profile analyses were conducted on caregiver psychosocial health indicators of burden, depression, health status, quality of relationship with patient, and social support. Changes in latent profile classification over 3 time points (baseline, 3 months, and 12 months post-stroke) were analyzed using latent transition analysis. A transition model with stroke rehabilitation use at 12 months post-stroke as the outcome was tested after accounting for covariates. Results: Two distinct caregiver psychosocial health latent profiles were found across time: nondistressed and distressed. Most caregivers were classified as nondistressed and remained nondistressed over time. Distressed caregivers at baseline were 76% likely to become nondistressed at 12 month post-stroke. Regardless of profile transition patterns, nondistressed caregivers at 12 months post-stroke tended to have cared for stroke rehabilitation nonusers at 12 months post-stroke. Patient depression explained profile classification at 3 months and 12 months post-stroke. After accounting for covariates, rehabilitation users at 3 months post-stroke tended to continue using rehabilitation at 12 months post-stroke only when they had nondistressed caregivers at 3 months post-stroke. Conclusions and Implications: Whether caregiver adaptation explains the associations between the latent profile transition patterns and rehabilitation use at 12 months post-stroke should be examined. Early psychosocial health assessment and sustained support should be made available to stroke caregivers to enhance their well-being and subsequent patient rehabilitation participation.
Objectives: To compare online cognitive-behavioral therapy (CBT) with and without telephone support respectively to online psychoeducation in a randomized controlled trial (RCT) in caregivers of people with dementia with mild anxiety or depression. Methods: Three-arm parallel-group RCT comparing online CBT with and without telephone support respectively to online psychoeducation. Online study with caregivers of people with dementia. The primary outcome measure was mental health measured by General Health Questionnaire–12 (GHQ-12) at 26 weeks. Secondary outcomes included the Hospital Anxiety and Depression Scale (HADS); the Relative Stress Scale (RSS) and the Short Sense of Competency Questionnaire. The primary analysis focused on people completing GHQ-12 at both baseline and 26 weeks, evaluated using analysis of covariance. Results: 638 people were randomized to the 3 treatment arms, of whom 208 were included in the analysis population. There were significant improvements in GHQ-12 in all treatment arms compared to baseline (P < .001 for all interventions), but neither CBT with nor without telephone support conferred any significant advantage compared to psychoeducation. For the secondary outcomes, there were no significant differences between CBT with telephone support and psychoeducation, but CBT without telephone support was less effective than psychoeducation with respect to HADS depression subscale [mean difference 1.86, 95% confidence interval (CI) 0.61, 3.11; P = .004] and caregiver stress (RSS mean difference 3.11, 95% CI 0.13, 6.09; P = .04). Good safety was achieved in all 3 treatment arms, with no deaths or serious adverse events. Conclusions and Implications: Online CBT with telephone support and psychoeducation both achieved significant benefits over 26 weeks compared with baseline in mental health and mood, but there were no advantages for CBT compared with the psychoeducation intervention. CBT without telephone support was less effective with respect to mood outcomes than psychoeducation and should not be recommended based on current evidence.
Impact and Implications: The current study highlights the importance of screening for suicidal ideation for both individuals with traumatic brain injury (TBI) and their caregivers, as findings suggest that thoughts of death and/or suicide are relatively common among both patients and caregivers up to a year post-injury. Moreover, patient suicidal ideation at hospitalization is predictive of reported caregiver suicidal ideation at later time points. Clinicians and rehabilitation specialists may wish to expanding practices of assessing suicide risk in patients to include caregivers, particularly caregivers of patients who endorsed suicidal ideation. Given that these findings demonstrate significant interdependence of suicidality between patients and caregivers, interventions for patients with TBI should include their respective caregivers or even incorporate family systems theories and approaches. Purpose/Objective: Traumatic brain injury (TBI) is associated with depression, anxiety, and even suicidality in individuals with TBI and in caregivers. Moreover, emotional functioning in individuals with TBI is linked with caregiver functioning. However, no known studies to date have examined linkages in suicidal ideation in individuals with TBI and family caregivers. This is especially important in Latin America, where TBI rates are high, and where cultural norms influence family caregiving. This study examined associations among self-reported suicidal ideation in individuals with TBI and their primary caregivers over time in Mexico and Colombia. Research Method/Design: A total of 109 individuals and their primary caregivers completed measures during hospitalization for TBI and at 2- and 4-months posthospitalization. The primary outcome was Item 9 from the Spanish version of the Patient Health Questionnaire-9, assessing for thoughts of death or suicide in the previous 2 weeks. Results: Patients and caregivers reported high levels of suicidal ideation (18.3%-22.4% and 12.4%-15.7%, respectively) at each time point, and suicidal ideation at one time point strongly predicted ideation at the next. When patients endorsed suicidal ideation in the hospital, their caregivers tended to endorse suicidal ideation 2 months later. Although unaccounted for variables could be driving these relationships, they may also provide possible evidence of causal preponderance between patient and caregiver suicidal ideation post-TBI. Conclusions/Implications: Clinicians and rehabilitation specialists can use these findings to inform suicide risk assessment by expanding these practices to caregivers of patients who endorsed suicidal ideation. Interventions after TBI should incorporate caregivers given this study showed significant interdependence of suicidality between patients and caregivers.
Background: Cancer is a taxing chronic disease that demands substantial care, most of which is shouldered by informal caregivers. As a result, cancer caregivers often have to manage considerable challenges that could result in severe physical and psychological health consequences. Technology-based interventions have the potential to address many, if not all, of the obstacles caregivers encounter while caring for patients with cancer. However, although the application of technology-based interventions is on the rise, the term is seldom defined in research or practice. Considering that the lack of conceptual clarity of the term could compromise the effectiveness of technology-based interventions for cancer caregivers, timely research is needed to bridge this gap. Objective: This study aims to clarify the meaning of technology-based interventions in the context of cancer caregiving and provide a definition that can be used by cancer caregivers, patients, clinicians, and researchers to facilitate evidence-based research and practice. Methods: The 8-step concept analysis method by Walker and Avant was used to analyze the concept of technology-based interventions in the context of cancer caregiving. PubMed, PsycINFO, CINAHL, and Scopus were searched for studies that examined technology-based interventions for cancer caregivers. Results: The defining attributes of technology-based interventions were recognized as being accessible, affordable, convenient, and user-friendly. On the basis of insights gained on the defining attributes, antecedents to, and consequences of technology-based interventions through the concept analysis process, technology-based interventions were defined as the use of technology to design, develop, and deliver health promotion contents and strategies aimed at inducing or improving positive physical or psychological health outcomes in cancer caregivers. Conclusions: This study clarified the meaning of technology-based interventions in the context of cancer caregiving and provided a clear definition that can be used by caregivers, patients, clinicians, and researchers to facilitate evidence-based oncology practice. A clear conceptualization of technology-based interventions lays foundations for better intervention design and research outcomes, which in turn have the potential to help health care professionals address the needs and preferences of cancer caregivers more cost-effectively.
Background: Family caregivers of patients with a destination therapy left ventricular assist device play a central and formalized role in postimplant care. Objectives: We aimed to characterize longitudinal stress, predictors and correlates of stress, and coping processes among left ventricular assist device caregivers. Methods: We performed a sequential, exploratory, mixed-methods study from 6 diverse left ventricular assist device programs. The primary outcome for the quantitative analysis was the Perceived Stress Scale-10 at 6 months (0-40). Based on the quantitative findings and guided by the Transactional Model of Stress and Coping, semistructured interviews explored causes of stress and coping processes. Integration was performed during the qualitative and interpretation phase. Results: A total of 96 caregivers met inclusion criteria for quantitative analysis. Mean (SD) Perceived Stress Scale score was 14.3 (5.5) preimplant and 11.8 (6.9) at 6 months. Preimplant, only decreased preparedness for caregiving was associated with higher Perceived Stress Scale score at 6 months. At 6 months, increased caregiver depressive symptoms, decreased caregiver preparedness for caregiving, and lower patient quality of life were associated with higher Perceived Stress Scale score. Qualitative analysis of 25 caregivers revealed the causes of stress coalesced around 3 themes: (1) lack of preparedness to be a caregiver, (2) uniqueness of stress for the caregiver and patient situation, and (3) caregiving responsibilities physically and emotionally impacting caregivers. To cope with stress, most caregivers employed emotion-focused coping. Conclusions: In family caregivers of patients with a left ventricular assist device, higher perceived stress was associated with lower caregiver preparedness, higher caregiver depressive symptoms, and lower patient quality of life. Emotion-focused coping strategies were common for caregivers. Future work should better prepare caregivers for this role and support them through the caregiving experience. Registration: URL: https://www.clinicaltrials.gov; Unique identifier: NCT02344576.
Objective: To test a model comprising explanatory (neurologic impairment, coping, personality) and mediating (resilience, self-efficacy, hope, social support) variables on psychological adjustment and burden among family caregivers of individuals with traumatic brain injury (TBI) vs spinal cord injury (SCI). Methods: Structural equation modeling with multigroup analysis. Setting: Six rehabilitation centers across New South Wales and Queensland, Australia. Participants: A total of 181 family members (N=181; 131 TBI, 50 SCI). Interventions: Not applicable. Main Outcome Measures: Connor-Davidson Resilience Scale, Eysenck Personality Questionnaire, Ways of Coping Questionnaire, General Self-Efficacy Scale, Herth Hope Scale, Medical Outcome Study Social Support Survey; and 4 measures of psychological adjustment including: Caregiver Burden Scale, Medical Outcomes Survey Short Form-36 (SF-36), General Health Questionnaire-28, and Positive and Negative Affect Scale. Results: The model for the aggregated sample demonstrated a very good model fit (χ2=47.42, df=39, ρ=0.167, normed fit index=.962, incremental fit index=.993, Tucker-Lewis index=.985, comparative fit index=.993, root-mean-squared error of approximation=.035). Multi-group analysis found significant commonalities in the pattern of relationships among variables across the 2 groups. In the only differences found, neuroticism was significantly more influential on burden in family members supporting individuals with TBI than family members of individuals with SCI. Furthermore, problem-focused coping was statistically more influential on positive affect in family members of individuals with TBI when compared with family members of individuals with SCI. Conclusions: The study found significant similarities in the patterns of resilience and psychological adjustment among family caregivers of individuals with TBI and SCI.
Background: Informal caregivers provide valuable care for ill or disabled adults. Nevertheless, many caregivers experience negative consequences from caregiving such as reduced mental health. Balancing personal costs of caregiving with caregivers' desires or obligations to provide care, is necessary to promote the well-being of these individuals and their care recipients. Drawing on a self-determination theory (SDT) perspective, caregivers whose psychological needs for relatedness, autonomy, and competence are satisfied with their care recipient, and their care recipients' healthcare providers, should be more autonomously motivated to care. Greater autonomous motivation should promote better mental health. Methods: This study tested mediation models in a sample of 158 caregivers in the United States. Autonomous motivation was examined as a mediator of the (a) associations between caregivers' need satisfaction with their care recipient and caregiver burden and depressive symptoms, and (b) associations between caregivers' autonomy support received from their care recipients' healthcare providers and caregiver burden and depressive symptoms. Next, specific types of motivation that vary in their relative autonomy were examined as unique mediators. Findings: Support was found for models using autonomous motivation as the mediator. Additionally, caregivers' autonomy support and female caregivers' need satisfaction were positively associated with intrinsic motivation to care which was negatively associated with burden. Although much research suggests caregivers' outcomes stem from the care recipients' condition, such as their functional dependence on others, the present study focused on the caregivers' relationships and motivations. Conclusions: Results support an SDT perspective of caregiving.
Background: Schizophrenia is the most severe mental chronic disabling disease that the majority of the patients need constant care in a variety of aspects. Regarding the role of family caregivers in taking care of these patients, caregivers need to be resilient, in addition to other psychological traits, to adapt to the circumstance. Objectives: This study aimed to investigate the effect of the emotion regulation training on the resilience of caregivers of patients with schizophrenia in southeastern Iran. Methods: The study was a parallel randomized controlled trial. Seventy caregivers of patients with schizophrenia were selected by convenience sampling method and randomly assigned to an emotion regulation training group and a control group. The intervention group received eight 90-min training sessions (one session weekly) about emotion regulation. The participants completed the Conner–Davidson resilience scale before and one month after the intervention. Results: The mean scores of the resilience increased in the control and intervention groups at the end of the study. A significant difference was found between the two groups (p < 0.001). At the beginning of the study, the mean score of the resilience was 59.94 in the control group and 51.97 in the intervention group. However, the mean score of the resilience in the control group was 61.28 after the intervention, which was not significant, but it was 69.08 in the intervention group, which was significant. A significant difference was observed between two groups in the mean scores (p = 0.01). Conclusions: According to the results of this study, cognitive and metacognitive skills of emotion regulation can be suggested as one of the methods for increasing the psychological well-being of schizophrenia patients’ caregivers. The increase of mental well-being and resilience of caregivers can help them better manage a patient with schizophrenia. Trial registration IRCT registration number: IRCT2017061733997N2, Registration date: 2017-08-16, 1396/05/25, Registration timing: prospective, https://en.irct.ir/trial/26116
Background: Suicidal ideation (SI) affects approximately 30-40% of those with major depressive disorder (MDD). To date, studies have examined the substantial humanistic and economic burden to caregivers of persons with MDD, however little is known of the impact of caring for persons with MDD when SI is present. Objectives: This study examined the additional burden imposed on caregivers for persons with unipolar depression and SI in five major European countries. Methods: A retrospective, cross-sectional analysis was conducted in five European countries using 2020 Europe National Health Wellness Survey (France, Germany, Italy, Spain and the United Kingdom) to compare differences in health and economic outcomes between caregivers of adults with unipolar depression and SI (CAUD-SI) and caregivers of adults with unipolar depression without SI (CAUD-nSI). The outcomes assessed included health-related quality of life (HRQoL; Medical Outcomes Study Short Form [SF-12v2]), health status (Short-Form 6 Dimension [SF-6D], EuroQol 5-Dimension 5-Level [EQ-5D-5L]), Work productivity and activity impairment (WPAI) and healthcare resource utilization (HRU). Linear mixed models and generalized linear mixed models adjusted for covariates were used to compare the two groups on outcomes of interest. Results: Of 62,319 respondents, 0.89% (n = 554) were CAUD-SI and 1.34% (n = 837) were CAUD-nSI. In adjusted models, CAUD-SI reported greater humanistic burden than CAUD-nSI, with lower HRQoL (PCS: 42.7 vs. 45.0, p < 0.001 and MCS: 37.5 vs. 38.9, p = 0.007) and health status (SF-6D: 0.57 vs 0.60, p < 0.001 and EQ-5D-5L: 0.58 vs 0.66, p < 001). CAUD-SI respondents reported significantly higher economic burden than CAUD-nSI respondents for WPAI (percent activity impairment: 64.9% vs. 52.5%, p = 0.026) and HRU (provider visits: 10.0 vs. 7.9, p < 0.001, emergency room visits: 1.49 vs. 0.73, p < 0.001 and hospitalizations: 1.03 vs. 0.52, p < 0.001). Conclusion: In five European countries, caregivers of adults with depression and SI experience additional humanistic and economic burden than caregivers of adults with depression and no SI. Distinguishing caregiver groupings and their unique burden provide important insights for providing targeted support and interventions for both the patient and caregiver.
Background: Previous studies have documented cognitive impairments, psychological stress, and depressive symptoms in family caregivers of people with dementia (PWD), which could be attributed to their sleep disturbances. Notwithstanding the increasing recognition of poor sleep quality and sleep disturbances in family caregivers of PWD, their association has not been tested yet using population-representative samples. Methods: We conducted a retrospective, cross-sectional study using population-based data from the 2018 Korean Community Health Survey. Sociodemographic, mental health-related, and physical health-related variables as well as sleep quality evaluated by the Pittsburgh Sleep Quality Index (PSQI) were compared between 2537 cohabitating caregivers of PWD, 8864 noncohabitat-ing caregivers of PWD, and 190,278 non-caregivers. Two sets of multivariable logistic regressions were conducted to examine the associations between dementia caregiving and poor sleep quality in cohabitating and noncohabitating caregivers versus noncaregivers. Results: Both cohabitating and non-cohabitating caregivers had higher global PSQI scores and higher prevalence of poor sleep quality (PSQI score > 5) than did noncaregivers. Multivariable logistic regressions adjusted for potential confounders revealed that cohabitating caregivers (odds ratio (OR) 1.26, 95% confidence interval (CI) 1.15–1.38) and noncohabitating caregivers (OR 1.15, CI 1.10–1.21) were significantly associated with poor sleep quality. Conclusions: Our results showed that both cohabitating and noncohabitating caregivers of PWD experienced overall poorer sleep quality compared to noncaregivers, indicating the deleterious effect of dementia caregiving on sleep quality, regardless of living arrangements. Given the high prevalence of poor sleep quality in family caregivers of PWD and the increasing awareness of the serious health consequences of poor-quality sleep, physicians should consider active sleep interventions to promote health and wellbeing not only for the dementia patients but also for family caregivers.
Objective: The purpose of this study was to evaluate whether positive and negative religious coping methods were associated with psychological distress and quality of life in parents of infants with congenital heart disease (CHD). Methods: This descriptive, cross-sectional study was conducted at a provincial hospital in Fujian, China. Clinical data from 115 parents of infants with CHD were collected. Chinese Sociodemographic Forms, Brief RCOPE, Beck Depression Interview (BDI), and the Short Form Health Survey (SF-36) were used in this study. Results: The sex of caregivers in infants with CHD was an independent predictor of BDI scores. The positive religious coping score and the negative religious coping score were both independent predictors of the BDI score (beta = -5.365, P = 0.006 and beta = 4.812, p = 0.017). The correlation between the quality-of-life scores and positive or negative religious coping scores indicated that positive religious coping scores were significantly positively correlated with Vitality, Social Functioning, and Mental Health scores. There was a significant negative correlation between negative religious coping scores and mental health scores. Conclusions: Positive or negative religious coping methods may be associated with psychological distress and quality of life among parents of infants with CHD. It is suggested that more attention should be devoted to the influence of religious coping methods on parents of infants with CHD, and the use of religious resources should be encouraged.
Backgrounds: As the prevalence of dementia rises, caregiver burden also increases in South Korea, especially for informal family caregivers. Objectives: This study aimed to analyze factors affecting caregiver burden by the severity of dementia based on data of patients in Seoul. Methods: A total of 12,292 individuals aged ≥65 years enrolled in the Seoul Dementia Management Project from 2010 to 2016 in an online database were selected. Caregiver’s burden was assessed using the Korea version of Zarit Burden Interview. Multiple regression analyses were performed to determine factors associated with primary caregiver’s burden after stratifying the severity of dementia. Results: Most patients showed moderate levels of cognitive impairment (49.4%), behavior problems (82.6%), and ADL dependency (73.6%). After stratifying the severity of dementia, caregivers caring for patients with mild symptoms of dementia were experienced with higher caregiver burden if patients were under a lower score of IADL. Significant factors for caregiver burden among caregivers supporting patients with moderate symptoms of dementia include caregivers’ residence with patients, subjective health status, and co-work with secondary caregivers. Lastly, caregivers for patients with severe dementia symptoms experienced a higher caregiver burden from limited cognitive function, problematic behavior, and caregivers’ negative health status. Conclusion: In terms of sample size, this study had far more patients than any other domestic or international study. It was meaningful in that it analyzed characteristics of patients with dementia and caregivers affecting the burden of caregivers in Korea. Intensive social supports with multiple coping strategies focusing on different levels of patients’ clinical symptoms and caregivers’ needs should be planned to relieve the caregiver burden.
Background: Mental illness exposes persons to stigma and this stigma also affects family caregivers of persons with mental illness. The objective of the study was to assess the prevalence of perceived stigma and associated factors among primary caregivers of children and adolescents with mental illness, Addis Ababa, Ethiopia. Methods: A cross-sectional study design and systematic random sampling technique were used to recruit 408 participants at St. Paul’s Hospital Millennium Medical College and Yekatit-12 Hospital Medical College, Addis Ababa, Ethiopia. We collected the data by face-to-face interview. Devaluation of Consumer Families Scale was used to measure perceived stigma. Patient Health Questionnaire-9 and Oslo-3 social support scale were the instruments used to assess the factors. Coded variables were entered into Epidata V.3.1 and exported to SPSS V.21 for analysis. Binary logistic regression was used for analysis. Result: A total of 408 participants were interviewed, with a response rate of 96.5%. The magnitude of perceived stigma was 38.5% with 95% CI (33.6-43.1). Majority (68.6%) of the respondents were female. In the multivariate logistic regression, being mother (AOR = 2.8, 95% CI: 1.59, 4.91), absence of other caregiver (AOR = 2.0, 95% CI: 1.15, 3.49), poor social support (AOR = 3.9, 95% CI: 1.59, 6.13), and symptoms of depression (AOR = 2.9, 95% CI: 1.88, 3.65) were factors significantly associated with perceived stigma. Conclusion: The prevalence of perceived stigma among primary caregivers of children and adolescents with mental illness was high. Being mother, absence of other caregiver, poor social support, and symptoms of depression were factors significantly associated with perceived stigma.
Background: Depression is a common and overwhelming psychiatric disorder among family caregivers of persons with severe mental illness (SMI). The interrelationships among social support, loneliness, and depression, especially among this relatively vulnerable group, are poorly understood. Objective: The aim of the present study was to test the hypothesis that the social support contributes to the alleviation of depression, through its effect on reducing loneliness. Methods: A survey of 256 rural family caregivers of persons with SMI was conducted between December 2017 and May 2018 in Chengdu City, Sichuan Province, China. Social support, loneliness and depression were measured. A series of multiple linear regression models and bootstrapping procedure were performed to examine the mediating effects of loneliness on the association between social support as well as its components and depression. Results: The proportion of family caregivers of persons with SMI who reported significant depressive symptoms was 53.5%. Loneliness fully mediated the negative association between social support and depression. As to three components of social support, subjective support and objective support only had indirect associations with depression mediated by loneliness, while support utilization had both direct and indirect relationships with depression. Conclusion: The current study highlighted that social support and its three components may acted as protective factors by decreasing the feelings of loneliness, which created a beneficial effect on depression among family caregivers of persons with SMI.
Background: Informal caregivers have a vital role in supporting and caring for family members with dementia. Caregiving is complex and may lead to psychological, physical, social and financial stress for caregivers. Methods: This article reports the findings of an integrative review that explored the literature on the psychological effect of caring for a family member with dementia at home. Findings: The article discusses four themes that were identified in the literature: 'the world shrinks'; 'surrender to the unknown'; 'robbed of the future'; and 'torn between relief and guilt'. Conclusions: These themes provide insight into the holistic experience of caring for a family member with dementia, revealing the positive and negative psychological effects of the role.
Background: Dementia caregiving has been associated with a range of adverse effects on the physical health of the caregiver. However, the specific mechanisms underlying the relationship between dementia caregiver stress and ill health remain unclear. Objective: The aim of this study was to investigate, using available prospective data, the relationship between perceived stress (burden) and pre-clinical indices of ill-health (cortisol awakening response and secretory immunoglobulin A) amongst dementia caregivers. The potential moderating effect of social support on the perceived stress-physiological stress/health relationship was also explored. Methods: Participants (N = 31) were caregivers of community-dwelling older adults living with dementia who were enroled in a psychoeducation support program and provided data (study questionnaire and saliva samples) at two timepoints (T1 and T2), 10 weeks apart. Hierarchical regressions were used to determine if changes in stress and social support predicted change in each of the physiological outcomes. Results: Findings indicate that caregivers with more hours of care at T1, or with greater satisfaction with social support, were more likely to exhibit an adaptive cortisol awakening response at T2. Moreover, social support was found to buffer the effect of caregiver stress and hours of caregiving on the cortisol awakening response. Conclusions: Implications for future interventions targeting caregiver health are discussed.
Background: The objective of this study was to analyze the effectiveness of a mindfulness-based intervention program for the promotion of well-being and health in family caregivers. Methods: The participants were 111 family women caregivers aged between 33 and 75 years old. This was a double-blinded randomized controlled trial. The mindfulness intervention program lasted 12 weeks. The experimental group underwent mindfulness and acceptance-based interventions (MABIs). The control group performed physical activity training. Results: A cross-lagged panel analysis was computed with the two waves of health, well-being, burden and resilience and age in years and intervention as predictors. The cross-lagged path model fit well χ2 (8) = 7.179, p = 0.51, root mean square error of approximation (RMSEA) = 0.00, comparative fit index (CFI) = 1.00, standardized root mean square residual (SRMR) = 0.05. The mindfulness intervention program was a significant predictor accounting for decreasing health problems (β = −0.292, p < 0.01) and burden (β = −0.190, p < 0.01) and increasing well-being (β = 0.107, p < 0.05) at post-test. Conclusions: Mindfulness-based intervention programs are effective in coping with the burden of family caregivers and, in turn, in promoting resilience, well-being and health among caregivers. Our findings encourage clinical uses of mindfulness interventions to promote health.
Background: Developing accurate identification methods for individuals with suicide attempts and providing them with follow-up care and supports can be a vital component of all comprehensive suicide prevention strategies. However, because of the difficulties concerning one’s intentions behind injurious behaviour, identifying suicide attempts is a challenge for families and clinicians. Objectives: The aim of this study was to investigate the differences between family report and clinical assessment for suicide attempts in the emergency department (ED). Methods: A total of 148 patients with suspected suicide attempts (SSAs) and 148 family caregivers in the ED were enrolled. The suicide risk module of the Chinese version of the MINI International Neuropsychiatric Interview and the self-report measure were used to assess those with SSA’s suicidal behaviours. The Family Adaptability and Cohesion Evaluation Scales and semi-structured interviews were used to investigate the characteristics of suicide risk and demographics of patients with SSA, as well as the rate and influencing factors of omitted suicide attempts reported by family caregivers. Results: The underreporting rate for family reported suicide attempts in the ED was 69.0%. The suicide attempts group indicated lower mean scores on perceptions of family resources, adaptability and cohesion. Patients' suicide risk rating (OR =−1.81, 95% CI: −3.87 to −0.33, p=0.036), family satisfaction (OR =−1.11, 95% CI: −2.29 to −0.06, p=0.048), and caregiver’s age (OR =−1.68, 95% CI: −3.10 to −0.48, p=0.010) might be associated with underreporting by families. If patients committed suicide attempts through a falling injury or medication overdose, their families may have misreported the suicide attempt. Conclusions: The discordance of suicide attempt records between family report and clinical assessment reveals the limitations of family self-reports when identifying suicide attempts. Interviews and observations, together with information from certain diagnoses, should be combined to accurately identify suicide attempters in the ED.
Objective: The objective of this review was to elucidate the evidence related to utilizing e-Health as a tool in improving the quality of life of informal caregivers of dependent patients due to cerebrovascular accident (CVA). Methods: This systematic review with meta-analysis includes 13 studies. For these studies, seven databases were searched between 2009 and 2019. A random-effects model was adopted for overall estimation and to explain the heterogeneity. Results: A random-effects model was adopted for overall estimation and to explain heterogeneity. The results did not demonstrate statistical significance (p<0.05) and low heterogeneity (I2 = 0). Conclusions: There is a tendency toward improvement in psychological health, solving care-related problems, as well as better prevention of problems arising from the burden. Therefore, new studies with larger sample size and primarily to conduct them for more than 6 months for the accuracy. Clinical relevance: This study reflects a trend toward improving psychological health, solving care-related problems, as well as improved the prevention of problems arising from the burden.
Objective: Caregiver stress is the term used to define the adverse effects of caregiving, and its prevalence among caregivers of people with traumatic brain injury (TBI) is amplified by the suddenness of brain injury. This systematic review aimed to identify whether remote interventions can be helpful in minimizing those financial, emotional, and physical stressors associated with caring for a person with TBI. Method: Studies were located by searching the following databases: PsycINFO, PubMed, Science Direct, Web of Science, Academic Search Premier, CINAHL, Medline, and Cochrane Central Register of Controlled Trials. Studies were included if they met the following criteria: (a) The study must be published in English, (b) The study must be published in a peer-reviewed journal, (c) The study must implement a remote intervention specific to caregivers of people with TBI, and (d) One or more symptoms of caregiver stress must be measured as an outcome. Results: After the review process, 12 articles met the inclusion criteria for the study. Most of the studies were randomized controlled trials, used an online problem-solving module, and targeted parents of children/adolescents with a TBI. Ten out of the 12 studies (83.3%) found that remote/online interventions improved caregiver stress outcomes and only two studies did not find improvement in caregiver stress outcomes. Conclusion: Results from this systematic review indicate that online interventions can be as effective as in-person interventions in reducing the symptoms of caregiver stress for caregivers of people with TBI. Implications for practice, research, and policy are discussed. Impact and Implications: Remote interventions are effective in improving life satisfaction, quality of life, and overall caregiver functioning among caregivers of people with traumatic brain injury (TBI). Remote interventions are also effective in reducing depression, anxiety, psychological distress, and other psychiatric symptoms among caregivers of people with TBI. Support services for caregivers should consider remote interventions such as online support groups, online psychotherapy, and telephone interventions to reduce access barriers for caregivers of people with TBI.
Background: Resilience, a capacity for addressing, recovering, and growing from challenging situations, can mitigate dementia care partners’ burden. Three main theoretical models predominate, treating resilience variably as an outcome, a trait, or a process. Objectives: In this scoping review, we examine how these three models inform definitions and measures of resilience in dementia care partners to understand whether there is a single coherent model and identify the gaps in conceptualizing and operationalizing resilience. Methods: We searched English-language peer-reviewed articles (January 1991–June 2019) that contained definitions and/or measures of resilience developed for or used with dementia care partners. Data were analyzed using content analysis. Results: We found that perspectives from the three existing theoretical models can be integrated into a unified framework for the study of resilience in dementia care partners. However, major gaps remain in operationalizing resilience for research due to a paucity of resilience outcomes and knowledge about resilience-related behaviors.
Background: Family caregivers' distinct depressive-symptom trajectories are understudied and have been examined independently during end-of-life (EOL) caregiving or bereavement, making it difficult to validate two competing hypotheses (wear-and-tear vs. relief) of caregiving effects on bereavement. Existing studies may also miss short-term heterogeneity in depressive symptoms during the immediate postloss period due to lengthy delays in the first postloss assessment. Objectives: This secondary-analysis study examined distinct depressive-symptom trajectories for caregivers of advanced cancer patients from EOL caregiving through the first 2 bereavement years with closely spaced assessments. Methods: Depressive symptoms were measured monthly during EOL caregiving and 1, 3, 6, 13, 18, and 24 months postloss among 661 caregivers using the Center for Epidemiologic Studies-Depression scale. Depressive-symptom trajectories were identified using latent-class growth analysis while controlling for gender and age. Results: We identified seven distinct depressive-symptom trajectories (prevalence) characterized by the timing, intensity, and duration of depressive symptoms: minimal-impact resilience (20.4%), recovery (34.0%), preloss-grief only (21.6%), delayed symptomatic (9.1%), relief (5.9%), prolonged symptomatic (6.5%), and chronically persistent distressed (2.5%). Conclusion: Caregivers of advanced cancer patients responded heterogeneously to the stresses of EOL caregiving and bereavement. The majority of caregivers was resilient while providing caregiving and quickly rebounded to healthy levels of psychological functioning during bereavement, whereas a minority experienced delayed-symptomatic, prolonged-symptomatic, or chronically-persistent-distressing depressive-symptom trajectories. Linking caregivers' psychological experiences from caregiving through bereavement by closely spaced assessments can more comprehensively illustrate their depressive-symptom trajectories, which confirm both the wear-and-tear and relief hypotheses, and help in targeting interventions for distinct depressive-symptom trajectories.
Background: As psychoeducation was originally developed from Western, this intervention should be integrated with a culture to obtain effective outcomes. However, how culturally adapted psychoeducation on family caregivers of schizophrenic client developed in the previous studies has not been systematically documented. Objective: The purpose of this review was to map culturally adapted psychoeducation in the previous studies. Methods: This scoping review followed Arksey and O’Malley approach. Inclusion criteria including family caregiver, culture, psychoeducation, and schizophrenia. Non-primary and non-experiment studies, non-English language, and non-free articles were excluded from the study. Advanced search technique used keywords family caregiver, culture, psychoeducation, schizophrenia on CINAHL, PubMed, and PsycInfo databases. Screening was done by checking duplication, title, and abstract. Full text of relevant articles was read in detail to select eligible articles. Selection results were described in the PRISMA flowchart. Data were analyzed after these were extracted and resumed on the table. Results: A total of eight studies were included in this review. More than half of articles used randomized control trial but these studies did not conduct follow-up. Most of studies were in Asia (6) and it conducted in the outpatient department (6). Almost all studies modified multifamily group psychoeducation with culture theories. The longest duration of intervention was 12 months. Multidiscipline health professional delivered the intervention and most of them were psychiatrist. Coping was the most family caregiver outcomes in reviewed studies. Conclusion: Limited studies were obtained in various ethnics and ways. Further studies need to measure effectiveness of the intervention in long-term effect.
Objectives: We aimed to analyse the degree of carer burden and depressive symptoms in family carers of persons with age-related macular degeneration (AMD) and explore the factors independently associated with carer burden and depressive symptoms. Methods: Cross-sectional study using self-administered and interviewer-administered surveys, involving 96 family carer-care recipient pairs. Participants were identified from tertiary ophthalmology clinics in Sydney, Australia, as well as the Macular Disease Foundation of Australia database. Logistic regression, Pearson and Spearman correlation analyses were used to investigate associations of explanatory factors (family caregiving experience, carer fatigue, carer quality of life and care-recipient level of dependency) with study outcomes -carer burden and depressive symptoms. Results: Over one in two family carers reported experiencing mild or moderate-severe burden. More than one in five and more than one in three family carers experienced depressive symptoms and substantial fatigue, respectively. High level of care-recipient dependency was associated with greater odds of moderate-severe and mild carer burden, multivariable-adjusted OR 8.42 (95% CI 1.88 to 37.60) and OR 4.26 (95% CI 1.35 to 13.43), respectively. High levels of fatigue were associated with threefold greater odds of the carer experiencing depressive symptoms, multivariable-adjusted OR 3.47 (95% CI 1.00 to 12.05). Conclusions: A substantial degree of morbidity is observed in family carers during the caregiving experience for patients with AMD. Level of dependency on the family carer and fatigue were independently associated with family carer burden and depressive symptoms. Trial registration number: The trial registration number is ACTRN12616001461482. The results presented in this paper are Pre-results stage.
Background: The complex, multifaceted care environment and the threatening situation of caring for hemodialysis patients cause tension in their family caregivers. Due to the severe tension, family caregivers are likely to ignore their basic needs and only pay attention to the patient's needs and related issues. This study was conducted with the aim of designing and evaluating the Perceived Care tension Questionnaire for Caregivers of Hemodialysis Patients (PCTQHFC). Methods: The present study was a sequential exploratory mixed methods study of scale development variant conducted in two phases: qualitative and quantitative. This study was conducted in 2019 in Shahrekord. The qualitative phase included item development and scale development. In the quantitative phase (Item Analysis), the validation characteristics of the tool were examined using face, content and construct validity, and its reliability by internal consistency and stability. Findings were performed using software SPSS 18. Results: Principal components analysis with orthogonal rotation to generate factors, showed that five factors, namely emotional exhaustion, inadequate social support, care burden, confusion and ambiguity and lack of adaptability skills had an eigenvalue of higher than 1, so that they explained, respectively, 75.98%, 61.36%, 72.49%, 76.33%, and 70.31% of the total variance. The internal consistency was obtained 0.811 and the inter-class correlation coefficient for the whole instrument 0.832. Conclusion: PCTQHFC is a culturally appropriate measure with strong psychometric properties. The instrument designed in this study measures the care tension of hemodialysis patients. Therefore, researchers, health-care providers, and community health policymakers can plan and implement interventions to reduce the tension of caregivers of hemodialysis patients by analyzing and identifying the tensions of caregivers.
Background: Alzheimer is a pathology that concers the patient and his family having a physical, social, economic and psychological impact. Research on family caregivers is still lacking and little is known about caregivers burden and ist associated factors in Tunisia. Objectives: The aim of this study were to describe caregiver burden among Tunisian family caregivers of patients with alzheimeŕs disease, its associated factors and ist relationship to social support. Methods: We conducted a cross-sectional study among 118 family caregivers during three months at the neurology outpatient departments of two university hospitals. Sahloul, Sousse and Taher Sfar, Mahdia. Using the Zarit Burden Interview-22 (ZBI)items and the Medical Outcome Study-Social Support Survey to assess burden and social support among the caregivers. Results: We included 118 caregivers of patients with Alzheimeŕs disease,with an average age of 45±15 years. Women were more predominant with a sex ratio of 0.57.Half of caregivers were the descent of patients. The Mean years of caregiving was 5±3 years with an average of 13 hours ±3 of care assistance per day. The mean ZBI Score was 38.4±18.5 and 16.1% of caregivers percived a severe burden. The mean ZBI Score was higher in female, retired, lowmsocio economic status and in rural area with a statistically significance difference. We found that caregiver burden and social support were highly correlated (p < 0.001,r=-0.41)indicating that a high level of caregiver burden was asoociated with a less level of social support. Conclusions: The level of burden in family caregivers who are caring for a patient with alzheimeŕs disease is high. A considerate help and support from helth care and social institutions is required by taking into account the factors that contribute to caregivers burden and considering the importance of social support in alleviating caregiver burden. Key messages: The level of burden in family caregivers who are caring for a patient with alzheimeŕs disease is high. High level of caregiver burden was asoociated with a less level of social support.
Background: Informal caregivers of persons with dementia often experience elevated levels of caregiving burden. However, existing studies tend to use a variable-centered approach to explore it. This study aims to understand the caregiving burden of informal caregivers of persons with dementia in Singapore through a combination of variable-centered and person-centered analytical approaches, and explore the correlates of identified factors and latent classes of caregiving burden. Methods: Zarit Burden Interview was used to gauge the caregiving burden of 282 primary informal caregivers of persons with dementia recruited through convenience sampling in Singapore. Factor analysis and latent class analysis were conducted to identify the latent factors and the latent classes of Zarit Burden Interview, followed by multiple linear regression and multinomial logistic regression to explore their significant correlates. Results: The analyses suggested a 17-item 3-factor structure for Zarit burden interview and three mutually exclusive caregiving burden classes. Regression analyses found that caregiving related variables especially care recipients’ memory and behaviour problems were correlated with both the factors and latent classes of caregiving burden. Conclusions: The combination of these two approaches suggests that caregivers experiencing higher burden on one domain are likely to experience higher burden on the other two domains. This further supports the point that more attention should be given to caregivers who experience an overall high burden. Future research could explore the generalizability of our findings among caregivers elsewhere and explore the type of support needed by caregivers, especially those experiencing high burden.
Background: Caregivers provide critical support for patients with chronic diseases, including heart disease, but often experience caregiver stress that negatively impacts their health, quality of life, and patient outcomes. Objectives: We aimed to inform health care teams on an evidence-based approach to supporting the caregivers of patients with heart disease. Methods and Results: We conducted a systematic review and meta-analysis of randomized controlled trials written in English that evaluated interventions to support caregivers of patients with heart disease. We identified 15,561 articles as of April 2, 2020 from 6 databases; of which 20 unique randomized controlled trials were evaluated, representing a total of 1570 patients and 1776 caregivers. Most interventions focused on improving quality of life, and reducing burden, depression, and anxiety; 85% (17 of 20) of the randomized controlled trials provided psychoeducation for caregivers. Interventions had mixed results, with moderate non-significant effects observed for depression (Hedges' g=-0.64; 95% CI, -1.34 to 0.06) and burden (Hedges' g=-0.51; 95% CI, -2.71 to 1.70) at 2 to 4 months postintervention and small non-significant effects observed for quality of life and anxiety. These results were limited by the heterogeneity of outcome measures and intervention delivery methods. A qualitative synthesis of major themes of the interventions resulted in clinical recommendations represented with the acronym "CARE" (Caregiver-Centered, Active engagement, Reinforcement, Education). Conclusions: This systematic review highlights the need for greater understanding of the challenges faced by caregivers and the development of guidelines to help clinicians address those challenges. More research is necessary to develop clinical interventions that consistently improve caregiver outcomes.
Objectives: Cancer affects both patients and their families. Sometimes, the effects of cancer on families are greater than its effects on patients. Family caregivers play significant roles in care for patients with cancer. Nonetheless, the data on the challenges they face in caregiving are limited. The present study explored the perspectives of patients with gastric cancer (GC), their family caregivers, and healthcare providers regarding family caregivers' challenges in caregiving to patients with GC. Methods: This descriptive exploratory qualitative study was conducted in 2019-2020. Six GC patients, six family caregivers, three physicians, and five nurses took part for a total of twenty participants. Purposive sampling was performed, and data were collected through semi-structured interviews and continued up to data saturation. Conventional content analysis was used for data analysis. Results: Caregivers' challenges in caregiving to patients with GC were grouped into five main categories, namely, lengthy process of GC diagnosis, delivery of bad news, management of physical symptoms, altered relationships, and psychological consequences, and 14 subcategories. Conclusion: Educating the public about the primary symptoms of GC and the importance of timely seeking medical care as well as using culturally appropriate protocols for delivering bad news is recommended. Empowering family caregivers for the effective management of GC symptoms and caregiving-related challenges are also recommended to reduce their caregiver burden.
Background: Drug use disorder (DUD) is a serious health condition that imposes a heavy burden on the persons who have a drug addiction experience and their families, especially in countries, such as Myanmar, where few formal support mechanisms are in place and repressive drug laws exacerbate the situation. Yet, in Myanmar, little is known about how informal caregivers are affected. Objectives: This qualitative study aims at exploring the socioeconomic and psychological burden that informal caregivers in Myanmar encounter, coping strategies they employ, as well as barriers to coping they face. Methods: Thirty primary informal caregivers were chosen purposively from a mental health hospital in Yangon for in-depth interviews. The recorded interviews were transcribed and the data were analysed using framework analysis. Findings: The results revealed that financial constraint, income loss, social limitation and negative impact on family cohesion are important dimensions of socioeconomic burden, whereas sadness, anger, helplessness, worry, fear and guilt are the main psychological distress factors encountered by caregivers of persons with DUD. Key coping strategies employed by caregivers include religious coping, financial coping, acceptance and planning. Moreover, perceived stigma towards persons with DUD and their caregivers was very high and caregivers received hardly any social support, inter alia because of the country's drug law which reinforces stigma and discrimination. Neither the government nor any other organization in Myanmar provided financial support to the caregivers. Conclusions: The results of this study showed that caring for persons with DUD has devastating effects on caregivers and their families. While the 2018 National Drug Control Policy can potentially help alleviate the burden on substance users and their families, further amendments of the existing drug law are urgently needed. Moreover, strengthening prevention and harm reduction approaches, improving treatment and rehabilitation services, as well as stigma-reducing educational campaigns should be considered a priority.
Background: Even in nonpandemic times, persons with disabilities experience emotional and behavioral disturbances which are distressing for them and for their close persons. Objectives: We aimed at comparing the levels of stress in emotional and behavioral aspects, before and during coronavirus disease 2019 (COVID-19), as reported by informal family caregivers of individuals with chronic traumatic brain injury (TBI) or stroke living in the community, considering two different stratifications of the recipients of care (cause and injury severity). Methods: We conducted a STROBE-compliant prospective observational study analyzing informal caregivers of individuals with stroke (IC-STROKE) or traumatic brain injury (IC-TBI). IC-STROKE and IC-TBI were assessed in-person before and during COVID-19 online, using the Head Injury Behavior Scale (HIBS). The HIBS comprises behavioral and emotional subtotals (10 items each) and a total-HIBS. Comparisons were performed using the McNemar's test, Wilcoxon signed-rank test or t-test. Recipients of care were stratified according to their injury severity using the National Institutes of Health Stroke Scale (NIHSS) and the Glasgow Coma Scale (GCS). Results: One hundred twenty-two informal caregivers (62.3% IC-STROKE and 37.7% IC-TBI) were assessed online between June 2020 and April 2021 and compared to their own assessments performed in-person 1.74 ± 0.88 years before the COVID-19 lockdown. IC-STROKE significantly increased their level of stress during COVID-19 in five emotional items (impatience, frequent complaining, often disputes topics, mood change and overly sensitive) and in one behavioral item (overly dependent). IC-TBI stress level only increased in one behavioral item (impulsivity). By injury severity, (i) mild (14.7%) showed no significant differences in emotional and behavioral either total-HIBS (ii) moderate (28.7%) showed significant emotional differences in two items (frequent complaining and mood change) and (iii) severe (56.6%) showed significant differences in emotional (often disputes topics) and behavioral (impulsivity) items. Conclusions: Our results suggest specific items in which informal caregivers could be supported considering cause or severity of the recipients of care.
Background: Social distancing rules and the closure of services associated with the COVID-19 pandemic have strongly impacted the physical and mental health of people with dementia. Digital technologies can represent an effective means to compensate for the distress associated with social distancing rules and the decreased use of in-person services. More specifically, technologies such as smartphones, tablets, and smart home systems can minimize the negative effects of social distancing and isolation, and the pressure on health and care systems. Indeed, they can provide a continuity of care and social connectedness, while decreasing exposure to risk. However, barriers such as digital literacy and lower income households can impede the access and use of digital technologies. Objectives: The aim of this international study was to compare the use of technology by people with dementia from different care settings, and their informal carers across four countries (Italy, UK, Australia, and Poland). Methods: People with dementia and informal carers were invited to participate in semi-structured interviews. Verbatim transcripts were analysed by researchers in each country using inductive thematic analysis. Results: A total of 141 people with dementia and carers (47 in Italy; 50 in the UK; 18 in Australia; 26 in Poland) were interviewed. The analysis identified three overarching themes: 1) different uses of technology (three subthemes); 2) benefits of technology (three subthemes); 3) limitations of technology (three subthemes). Results show that calls, video calls, and group-chats were effectively used across countries to guarantee the continuity of relationships with professionals, families, and small groups of peers. Telemedicine was used with varying levels of satisfaction. Furthermore, the benefits experienced by carers exceeded those for people with dementia. Similar barriers were reported across countries, and were strictly associated with dementia deficits, low level digital literacy, and the need for carer’s supervision. Conclusions: These international findings highlight the importance to maximise the benefits related to the use of technology according to people with dementia’s impairment and care context. Moreover, it should be complementary to in-person care which should be provided, at least to some extent, even during pandemic times.
Background: Taking care of a person with a physical disability can become a challenge for caregivers as they must combine the task of caring with their personal and daily needs. Objectives: The aim of this study was to assess the impact that taking care of a person who needs support has on caregivers and to analyze certain characteristics they present, such as self-esteem and resilience. Methods: To that end, a bibliographic review was carried out from 1985, when the first article of taking care of a person who needs support was published, to 2020 (inclusive), in the databases of Web of Science (WoS), Scopus, Pubmed, Eric, Psycinfo, and Embase. Results: The search yielded a total of (n = 37) articles subject to review, following the guidelines established in the PRISMA declaration. Conclusions: The results show that caregiving was highly overburdening and negatively affected the physical condition and the psychological and mental states of caregivers. In addition, certain psychological characteristics present in caregivers such as having high self-esteem and being resilient were found to act as protective factors against the caregiving burden.
Background: There is no study comparing schizophrenia and autism spectrum disorders (ASD) in terms of caregiver burden. Objectives: This study aims to compare the caregiver burden among family members of the patients with schizophrenia and ASD and investigate the predictive factors. Methods: A cross-sectional study with the family members living with and/or providing care to their patients was carried out. A sociodemographic form, the Beck Depression Inventory, the Self-Stigma Inventory for Families, and the Zarit Caregiver Burden Scale were utilized. Regression analyses were conducted to determine the predictive factors for higher burden. Results: Caregiver burden in ASD was significantly higher than in schizophrenia. Regression analysis showed that the predictors of high caregiver burden were the need for self-care (OR=3.6), self-destructive behaviors (OR=3.4), self-stigma (OR=1.1), depression (OR=1.1), and level of income (OR=1.0) for all family members. When the diagnosis was removed from the equation, the factors determining the high burden did not change. Conclusion: This study suggests that characteristics of the illness are stronger predictors than family members' characteristics in explaining high caregiver burden for both illnesses. Psychological, social, and economic supports should be provided for families to help alleviate their caregiving burden.
Objective: This study aimed to evaluate caregiver burden among caregivers of acute stroke patients with a biopsychosocial perspective in a Turkey sample. Methods: 72 stroke patients and 72 their caregivers were included the study. The mean age of the stroke patients included in the study was 65 +/- 12.39. The mean age of caregivers was 44.5 +/- 14 and 66.7% of them were females. Modified Motor Assessment Scale (MMAS), Standardized Mini Mental State Examination (SMMSE) and The Barthel Index (BI) were used to assess the patients with stroke. The caregivers were evaluated by using the Bakas Caregiving Outcomes Scale, Family Sense of Coherence Scale-Short Form (FSOC-S), Hospital Anxiety and Depression Scale (HADS), WHOQOL-Bref-Short Form and Multidimensional Scale of Perceived Social Support (MSPSS). Results: There were significant positive correlation between the BCOS score and the SMMSE (r=0.36; p=0.002) and BI (r=0.22; p=0.05) scores. A significant positive correlation was found between the BCOS score and MSPSS's family (r=0.31; p=0.007), friend (r=0.41; p<0.01) and special human (r=0.46; p<0.01) sub-parameters. In addition, there were significant positive correlations between BCOS score and the physical (r=0.35; p=0.02) and environmental (r=0.42; p<0.01) sub-dimensions of the WHOQOL-BREF, also HADS Depression sub-score (r=0.93; p=0.01). Correlations between BCOS score and patients' age, MMAS, FSOC-S, scores and HAD Anxiety sub-score were not statistically significant (p>0.05). Conclusion: The cognitive function and independence level of the patients is associated with care burden. Furthermore, psychosocial features such as poor social functioning, quality of life and emotional health of caregiver have adverse effects on caregiver burden.
Background: Although the extant literature identifies resistance to care (RTC) as one of the most frequently reported and impactful caregiver (CG) stressors, typical studies that rely on quantitative measures of RTC do not fully explain how and why RTC negatively influences CGs’ well-being. As such, it is difficult to develop specific intervention strategies to support CGs in dealing with RTC. Methods: Informed by existing literature and tenets from Stress Theory, the current study includes semi-structured interviews with 19 family CGs of community-dependent (non-institutionalized) elders, regarding their RTC experiences. Through a directed qualitative content analysis, we explored occurrence patterns, contextual factors of when and how RTC occurs, how CGs respond to RTC, and its potential impact on CGs’ subjective stress. Findings: The results revealed distinguishable characteristics of four types of RTC: Frequent-Pervasive, Frequent-Delimited, Transition-Activated, and Shock-to-Unfamiliar/Unexpected. Conclusions: We discuss how recognition of those types of RTC can be integrated into CG support intervention strategies.
Objectives: Family caregivers play an important role in maintaining the oral health of homebound older adults. Thus, this preliminary study investigated family caregivers' burdens and the oral care they provide to homebound older patients. Methods: A cross‐sectional survey was conducted. A questionnaire was distributed to 230 family caregivers of homebound older patients. We used the Japanese version of the Zarit Burden Interview (J‐ZBI) to measure caregiver burden. The cut‐off score for the J‐ZBI was 21 points. Caregivers with a care burden score below 21 points formed the mild group, while those scoring 21 points or more were included in the moderate/severe group. The differences between the groups were examined. The implementation status of oral care was assessed by the amount of time caregivers spent providing oral care and related concerns. The degree of independence for homebound older patients was measured using the Barthel Index. Multiple logistic regression analyses were conducted to determine the factors associated with the severity of caregiver burden. Results: A total of 114 caregivers returned the questionnaires by mail (response rate: 49.6%). The moderate/severe care burden group represented 80.7% of the caregivers. A multiple logistic regression analysis revealed that the level of patient independence and time spent performing oral care were significantly associated with the severity of caregiver burden. Conclusions: The results show that family caregivers experiencing high caregiver burden spent less time providing oral care than caregivers who reported less caregiver burden. Thus, support for oral health management provided by oral health professionals is considered necessary for family with a high caregiver burden of homebound older patients.
Objective: Islamic population constitute more than 20% of the world population and is growing rapidly. Nevertheless, data concerning informal caregiving to older Muslim patients diagnosed with cancer are scarce. Improving the well-being of caregivers is a vital step to optimal care for the patients themselves throughout the Muslim community and the world. This study focuses on a sample of Palestinian caregivers of older Muslim patients diagnosed with cancer living in East Jerusalem, the West Bank, and Gaza. The study aims to describe the socio-demographic characteristics of the caregivers and to understand their social support, and identify predictors of caregivers’ depression. Methods: A cross-sectional study of a convenience sample of 99 dyads of Palestinian patients (age ≥65) and their informal caregivers. Depression and social support were measured using the five items of the Geriatric Depression Scale and the Cancer Perceived Agents of Social Support questionnaire. Results: Caregivers were most frequently adult children (52%) or spouses (32%), with male patients cared for by spouses (47.5%) or sons (32%), and female patients by daughters (50%). Clinical levels of depression were reported by 76% of the caregivers and 85% of patients. The significant predictors of caregiver depression were female gender, lower education, lower perceived social support from spouse and family, and higher perceived support from faith. Significance of results: Healthcare providers serving the study population should determine the position and role of the caregiver within the social and family structure surrounding the patients’ families. This understanding may facilitate overcoming barriers to effective and meaningful social support.
Background: Upsurge in life expectancy, filial responsibility of caring, and healthcare advances have increased the older adult population in Asia. The last decade has witnessed nuclear families' proliferation in Asia, leaving family caregivers with more accountability and responsibility. This review explores the pattern of caregiver burden among caregivers of older adults with chronic illness in Asia. Methods: PRISMA guidelines serves as the framework for this systematic review. Studies from selected databases assessed caregivers' physical state, psychological dysfunction, and or burden as an outcome measure. The Newcastle - Ottawa Quality Assessment Scale appraised the quality of the selected studies. Results: The review included 12 research articles. Caregivers consistently report mild to a moderate burden. Care recipient with functional dependency, comorbidities, memory, and sleep impairments, escalate caregiver burden. Caregiver variables intensifying burden were advancing age, male gender, spouse as a care recipient, longer care provision duration, and no assistance. Conclusion: Optimal levels of emotional well-being, significant family/social support, and self-preparedness among caregivers are grounds for their empowerment. Practical Implications: A paradigm shift from 'caregiver burden' to 'caregiver resilience' is advocated. Routine screening, preventive measures (skill-building and psychosocial empowerment), and restorative services (respite care and problem-based home visiting) for caregivers are forecasted.
Objectives: Pancreatic cancer (PC) has high morbidity and mortality and is stressful for patients and their partners. We investigated the psychological symptom burden in partners of PC patients. Methods: We followed 5774 partners of PC patients diagnosed from 2000 to 2016 up for first redeemed prescriptions of antidepressants or hospital admission, anxiolytics, and hypnotics as proxies for clinical depression, anxiety, and insomnia and compared them with 59,099 partners of cancer-free spouses. Data were analysed using Cox regression and multistate Markov models. Results: The cumulative incidence proportion of first depression was higher in partners of PC patients compared to comparisons. The highest adjusted HR of first depression was seen the first year after diagnosis (HR 3.2 (95% CI: 2.9; 3.7)). Educational level, chronic morbidity, and bereavement status were associated with an increased risk of first depression. There was a significantly higher first acute use (1 prescription only) of both anxiolytics and hypnotics and chronic use (3+ prescriptions) of hypnotics in partners of PC patients than in comparisons. Conclusion: Being a partner to a PC patient carries a substantial psychological symptom burden and increases the risk for first depression and anxiolytic use and long-term use of hypnotics. Attention should be given to the psychological symptom burden of partners of PC patients, as this may pose a barrier for the optimal informal care and support of the PC patient, as well as a risk for non-optimal management of symptoms in the partner.
Objectives: Lewy body dementia is a common neurodegenerative dementia with unique challenges in managing day-to-day life. A more in-depth multifaceted picture of the Lewy body dementia lived experience will enable identification of best practice and future research direction. The review aim was to explore experiences of people living with Lewy body dementia and their family carers. Methods: Integrative review method informed by Whittemore and Knafl, supported by the information retrieval framework PALETTE. A convergent integrated approach enabled synthesis of key findings and theme identification. Data sources: Medline, CINAHL, PsycINFO, AMED, and ALOIS databases were systematically searched to find studies published between 1995 and 2020. Review Methods: Twenty-six articles from twenty studies were synthesized (from 1583 retrieved). Quality and relevance were appraised using the Mixed-Methods Appraisal Tool and Gough's ‘Weight of Evidence’ framework. Data management was supported by ATLAS.ti 8 and COVIDENCE software. Results: Four themes were identified: living with an uncertain diagnosis and prognosis; fear of the now – worry for the future; living with behavioural and psychiatric symptoms; and maintaining a social and emotional life. People reported difficulty finding information and support around diagnosis, disease progression and managing complex symptoms. The result is increased caregiver burden, grief and stress and reduced quality of life. Conclusion: Delayed diagnosis and complex symptom burden means people are not getting the timely support and information they need to live and die well. Current evidence is largely quantitative, with a focus on family caregiver burden and unmet need. The challenge remains in how to capture a more holistic picture of the lived experience for people living with Lewy body dementia and those who care for them. Impact: This review highlighted current knowledge and identified gaps in exploring the lived experience for people with Lewy body dementia and their families.
Background: Although family caregivers (FCs) play an important role in the care provided to incurable cancer patients in our region, little is known about the burden they experience. Objectives: This study was conducted to determine the prevalence of caregiver burden (CB) among FCs of incurable cancer patients in two Eastern Mediterranean countries and to identify factors that may be associated with significant CB. Methods: The study included 218 FCs, 165 from Egypt and 53 from Saudi Arabia. The 22-item Zarit Burden Interview (ZBI-22) was used to assess caregiver burden CB. Significant CB was defined as a ZBI-22 score ≥ 21. The assistance with basic ADLs was classified into 3 levels according to FCs’ assistance with early/middle/late-loss basic ADLs. The relationship between CB and the assistance with ADLs and other factors was studied. Results: The mean (SD) ZBI-22 score among FCs was 23.4 (9.3) and the majority (128/218, 59%) had significant CB. Eighty-nine percent of FCs assisted with at least one basic ADL. Assistance with late-loss basic ADLs, best supportive care treatment plan and poorer performance status were associated with higher CB (p < 0.0001, =0.018 and = 0.005). However, in logistic regression analysis, only assistance with late-loss ADLs was independently associated with significant CB (OR = 3.4 [95%CI:1.2–9.7], p = 0.024). Conclusion: A substantial proportion of FCs of incurable cancer patients in our region experience significant CB. Family caregivers assisting with late-loss basic ADLs are at risk of significant CB and should be routinely screened for CB.
Background: Families are integrally involved in day-to-day caregiving of children with neurodevelopmental and intellectual disabilities (NDID). Given the widespread and increasing prevalence of children with NDID and the impact of family caregiving on psychological, social, and economic implications for both the child and family, understanding and supporting these families is an important public health concern. Objective: We conducted a scoping review on peer support networks to understand their implications on families. Considering increasing prevalence of NDID's, understanding the implications of existing networks is critical to improve and nurture future support networks that can complement and reduce the burden on existing formal support systems. Methods: A comprehensive search of multiple databases was conducted. Articles were screened by two reviewers and any disagreements were resolved by a third reviewer. We explored existing research on parent-to-parent peer support networks, which included networks that developed informally as well as those that involved a formal facilitator for the group interpersonal processes. There were no limits on the study design, date and setting of the articles. We included all research studies in English that included an identifier for (i) “peer support networks,” (ii) “children with neurodevelopmental and intellectual disabilities” and (iii) “family caregiver outcomes.” Results: We identified 36 articles. Majority of the studies were conducted in North America, and were face to face networks. They included families of children with a wide range of NDIDs. Relevant information extracted from different studies highlighted peer support network characteristics and development process, needs of family caregivers attending these networks, factors affecting caregiver participation and the impact of peer support networks on family caregivers. These networks represent a way to strengthen family caregivers, developing resilience and social interactions. Family caregivers sharing similar experiences support one another and provide critical information to each other. Although results are encouraging, future studies incorporating improved study designs are needed to better evaluate the effectiveness of peer support networks. Furthermore, studies where peer support networks develop organically while the child is supported are warranted. Conclusion: Although results obtained are encouraging, our findings support the need for further research studies of peer support networks with better designs and more detailed description of the factors involved in the development.
Background: The family of leukemia patients, due to their caring role, often feels psychological distress. A practical need-based program carefully considers the set of requirements of nursing service recipients. This paper illustrates the efficacy of a designed family-need-based program on relieving stress, anxiety, and depression of family caregivers of leukemia patients. Methods: In this controlled trial, sixty-four family caregivers of leukemia patients referring to a medical center in Iran were recruited by convenience sampling and randomly divided into study and control groups. The study group attended a designed need-based program. The control group did not receive the intervention. Stress, anxiety, and depression of both groups were simultaneously measured and compared in three time-points using the scale of stress, anxiety, and depression (DASS-42). Data were analyzed using descriptive and inferential statistics. Results: Before the program, the average scores of stress, anxiety, and depression were 31.16 ± 4.14, 21.37 ± 6.31, and 27.56 ± 4.24 for the study group and 31.09 ± 4.48, 20.34 ± 6.56, and 28.78 ± 4.72 for the control group. After the program, the average scores of stress, anxiety, and depression were 10.56 ± 3.37, 6.75 ± 2.99, and 7.37 ± 2.76 for the study group and 34.87 ± 2.51, 23.65 ± 4.96, and 32.56 ± 3.49 for the control group, respectively. Results of the independent t test indicated no considerable difference before the program (P > 0.05) and a significant difference after the program (P < 0.001) between the two groups. Conclusion: This family-need-based program can decrease the level of stress, anxiety, and depression of the family caregivers of leukemia patients and may potentially alleviate the psychological distress of family caregivers over their caring role.
For persons with Parkinson’s disease, the loss of autonomy in daily life leads to a high level of dependency on relatives’ support. Such dependency strongly correlates with high levels of perceived stress and psychosocial burden in informal caregivers. Global developments, such as demographic change and the associated thinning infrastructure in rural areas cause a continuously growing need for medical and nursing care. However, this need is not being adequately met. The resulting care gap is being made up by unpaid or underpaid work of informal caregivers. The double burden of care work and gainful employment creates enormous health-related impairments of the informal caregivers, so that they eventually become invisible patients themselves. Expectedly, those invisible patients do not receive the best care, leading to a decrease in quality of life and, in the end, to worse care for PD patients. Suggested solutions to relieve relatives, such as moving the person affected by Parkinson’s to a nursing home, often do not meet the wishes of patients and informal caregivers, nor does it appear as a structural solution in the light of demographic change against an economic background. Rather, it requires the development, implementation and evaluation of new, holistic approaches to care that make invisible patients visible.
Objective: The purpose of this study was to compare the use of antidepressants over 6 years between family caregivers providing high-intensity care and a matched control population using register-based data. Methods: The study includes all individuals, who received family caregiver’s allowance in Finland in 2012 (n = 29,846 females, mean age 66 years; n = 12,410 males, mean age 71 years) and a control population matched for age, sex, and municipality of residence (n = 59,141 females; n = 24,477 males). Information on purchases of antidepressants, including the number of defined daily doses (DDD) purchased, between 2012 and 2017 was obtained from the national drugs reimbursement register. Results: During the follow-up, 28.5% of female caregivers and 23.5% of the female controls used antidepressants, while the numbers for males were 21.1% and 16.4%, respectively. Adjusted for socioeconomic status, female caregivers used 43.7 (95% confidence interval 42.4–45.0) and their controls used 36.2 (35.3–37.2) DDDs of antidepressants per person-year. Male caregivers used 29.6 (27.6–31.6) and their controls used 21.6 (20.2–23.0) DDDs of antidepressants per person-year. Among female caregivers, the relative risk for use of antidepressants was similar (about 1.3) from 20 to 70 years, after which the relative risk declined. In male caregivers, the relative risk was highest (about 1.4–1.5) between 45 and 65 years. Conclusions: Family caregivers providing high-intensity care use more antidepressants and hence, are likely to have poorer mental health than the age-matched general population in virtually all age groups. However, the magnitude of the higher use varies as a function of age and gender.
Background: Care partners (ie, informal family caregivers) of individuals with health problems face considerable physical and emotional stress, often with a substantial negative impact on the health-related quality of life (HRQOL) of both care partners and care recipients. Given that these individuals are often overwhelmed by their caregiving responsibilities, low-burden self-management interventions are needed to support care partners to ensure better patient outcomes. Objective: The primary objective of this study is to describe an intensive data collection protocol that involves the delivery of a personalized just-in-time adaptive intervention that incorporates passive mobile sensor data feedback (sleep and activity data from a Fitbit [Fitbit LLC]) and real time self-reporting of HRQOL via a study-specific app called CareQOL (University of Michigan) to provide personalized feedback via app alerts. Methods: Participants from 3 diverse care partner groups will be enrolled (care partners of persons with spinal cord injury, care partners of persons with Huntington disease, and care partners of persons with hematopoietic cell transplantation). Participants will be randomized to either a control group, where they will wear the Fitbit and provide daily reports of HRQOL over a 3-month (ie, 90 days) period (without personalized feedback), or the just-in-time adaptive intervention group, where they will wear the Fitbit, provide daily reports of HRQOL, and receive personalized push notifications for 3 months. At the end of the study, participants will complete a feasibility and acceptability questionnaire, and metrics regarding adherence and attrition will be calculated. Results: This trial opened for recruitment in November 2020. Data collection was completed in June 2021, and the primary results are expected to be published in 2022. Conclusions: This trial will determine the feasibility and acceptability of an intensive app-based intervention in 3 distinct care partner groups: care partners for persons with a chronic condition that was caused by a traumatic event (ie, spinal cord injury); care partners for persons with a progressive, fatal neurodegenerative disease (ie, Huntington disease); and care partners for persons with episodic cancer conditions that require intense, prolonged inpatient and outpatient treatment (persons with hematopoietic cell transplantation). Trial Registration: ClinicalTrials.gov NCT04556591; https://clinicaltrials.gov/ct2/show/NCT04556591 International Registered Report Identifier (IRRID): DERR1-10.2196/32842
Objective: This study assessed levels of anxiety, depression, and stress among family caregivers of children and adolescents with mental disorders in Ghana and the implication on medication adherence. Design: A cross-sectional study. Setting: The study was conducted at the outpatient departments of the three main public psychiatric hospitals in Ghana. Participants: Two hundred and ten non-paid family caregivers of children and adolescents with mental disorders were recruited for this study. Main Outcome Measure: The study assessed symptoms of anxiety, depression and stress among the caregivers and estimated caregiver-reported medication adherence. Results: About 56.2%, 66.2% and 78% of the caregivers experienced severe anxiety, severe depression and moderate to severe stress symptoms respectively. From the multiple logistic regression model, while anxiety was significantly affected by religion and education, depression was influenced by sex, age, marital status, proximity to facility, and employment status. Female caregivers had about four times higher odds of being depressed compared to male caregivers (aOR: 3.81, 95% CI: 1.66 - 8.75). The caregiver-reported medication adherence was 11.9%. Anxiety was significantly predictive of medication adherence. Conclusion: Most family caregivers of children and adolescents with mental disorders experienced symptoms of anxiety, depression and stress with anxiety having implications for medication adherence. The study findings underscore the need to consider psychological characteristics of caregivers and the provision of mental health support for them, as part of the routine health care for children and adolescents with mental disorders.
Objectives: To examine the association between caregiver (CG) depression and increase in elder mistreatment and to investigate whether change in care recipient (CR) neuropsychiatric symptoms (NPS) and change in CG-perceived burden influence this association. Methods: Using 2-year longitudinal data, we analyzed a consecutive sample of 800 Chinese primary family CGs and their CRs with mild cognitive impairment or mild-to-moderate dementia recruited from the geriatric and neurological departments of 3 Grade-A hospitals in the People's Republic of China. Participatory dyads were assessed between September 2015 and February 2016 and followed for 2 years. Results: CG depression at baseline was associated with a sharper increase in psychological abuse and neglect. For CRs with increased NPS, having a depressed CG predicted a higher level of psychological abuse than for those CRs without NPS. For CGs with decreased burden, the level of depression was associated with a slower increase in neglect than for CGs who remained low burden. Discussion: This study showed the differential impact of CG depression on the increase in elder mistreatment depending on the change in CR NPS and CG-perceived burden. Conclusions: The present findings provide valuable insights into the design of a systematic and integrative intervention protocol for elder mistreatment that simultaneously focuses on treating CG depression and perceived burden and CR NPS.
Objectives: We aimed to describe the characteristics of caregivers with cancer compared to those without and analyze the association between having cancer and caregivers’ psychological distress in Japan. Methods: We used data from the Japanese Comprehensive Survey of Living Conditions in 2010, 2013, and 2016. The participants were 5258 family caregivers aged ≥40 years, caring for only one family member whose information in the dataset was available for all the covariates included in the model. The family caregivers’ psychological distress was defined by the Kessler Psychological Distress Scale (K6) score (K6 ≥ 5). We conducted a Poisson regression analysis to examine the association between having cancer and family caregivers’ distress. Results: The sample of family caregivers consisted of mostly females (69.3%) and people within the 40–64 years age group (51.8%). As a result, family caregivers with cancer increased across the survey periods; a higher number of participants were unemployed. When adjusted for covariates, including the presence of other diseases, having cancer was significantly associated with distress (risk ratio 1.33, 95% confidence interval 1.05–1.69) among family caregivers. Conclusions: Family caregivers with cancer are expected to increase in the future; it is important to provide them with more support in managing both their treatment and caregiving to cope with their distress.
Objective: Post-stroke disability and psychosocial disorders cause burdens for the families of stroke patients, including physical and financial burdens. The physical and psychological health of family caregivers determines the quality of care they provide to patients. The purpose of this study was to identify the effectiveness of the Caregiver Empowerment Program Based on the Adaptation Model (CEP-BAM) in increasing the family caregiver's coping ability against various problems and reducing their burden while caring for the stroke patient. Methods: This research was a quasi-experimental study with pre- and post-test control group design. The intervention group received CEP-BAM, while the control group received a conventional intervention in the form of a discharge planning program for family caregivers in the hospital. The samples were caregivers who care for and facilitate the recovery of stroke patients during their convalescence at home. We selected the samples from the population using the stratified random sampling method. The number of samples completed in the study was 40 in the intervention group and 40 in the control group. Measurement of outcome variables (coping and caregiver burden) was carried out 4 times including pre-test before the intervention, post-test 1 at 4 months after the intervention, post-test 2 at 5 months after the intervention, and post-test 3 at 6 months after the intervention. Results: There were significant differences in caregiver's coping (P = 0.016) and caregiver's burden (P = 0.009) in measurements between the two groups. Conclusions: The CEP-BAM interventions were effective in increasing adaptive coping strategies and reducing the burden of caregivers 4 months and continuing 6 months after the intervention.
Background and Objectives: The "unexpected career"of caregiving has previously been conceptualized in stages: community care through institutional placement/residence, ending with death of the care recipient. Transition programs such as Money Follows the Person (MFP) created a new stage of the caregiving career, caring for someone post-long-term institutionalization, about which little is known. Using Pearlin's Caregiver Stress Process Model, this study explores effects on caregivers from the return of their loved ones to the community after a long-term institutional stay. Research Design and Methods: Cross-sectional surveys of 656 caregivers of persons transitioned through Connecticut's MFP program 2014-2018, completed 6 months posttransition. Results: Regardless of the age/disability of the care recipient, and despite experiencing high caregiving intensity, caregivers experienced less burden, anxiety, and depression, and higher benefits of caregiving than demonstrated in literature for the general caregiving population. Most felt less stressed than before and during the participant's institutional stay. Factors associated with worse outcomes included worry about safety, strained finances, missing work, and desiring additional services. Black and Hispanic caregivers experienced lower burden and anxiety and higher benefits of caregiving than White caregivers. Discussion and Implications: By providing community supports to participants, transition programs can have broad ancillary benefits for caregivers and improve outcomes in the Pearlin model, lessening potentially deleterious effects of an unexpected return to intensive caregiving duties after institutional placement. Positive results for Black and Hispanic caregivers may reflect cultural expectations in caring for family that buffer the adverse effects of caregiving.
Objective: Family caregivers play an essential role in end-of-life care but suffer considerable impact on their own health. A better understanding of main factors related to carers' health is important to inform interventions. The purpose of the study was to test for the first time the potential impact of a comprehensive set of observable variables on carer health during end-of-life caregiving within a population-based carer sample. Design National retrospective, cross-sectional, 4-month post-bereavement postal census survey of family carers of people who died from cancer. Methods: Relatives who registered a death from cancer during a 2-week period in England were identified from death certificates by the Office of National Statistics; response rate was 1504/5271 (28.5%). Outcome measures Carers' mental health was measured through General Health Questionnaire (GHQ)-12; general health was measured through EuroQoL EQ-Visual Analogue Scale (EQ-5D VAS). Methods Survey questions to measure potential variables associated with carer health were based on past research and covered patients' symptoms and functioning; caregiving activities and hours; informal and formal help received; work hours, other caregiving, volunteering; changes to work, income and expenditure; sleep and relaxation; and demographic variables. Bivariate analyses and ordinary least square regression were performed to investigate these variables' relationship with outcomes. Results: Patients' psychological symptoms and functioning, caregiving hours, female gender and self-sought formal help related to worse mental health. General practitioner and social care input and relaxation related to better mental health. Patients' psychological symptoms, caregiving hours and female gender were associated with worse general health, and older age, employment and relaxation were associated with better general health. Conclusions: Improvements in carers' health overall may be made by focusing on potential impacts of patients' psychological symptoms on carers, facilitating respite and relaxation, and paying particular attention to factors affecting female carers.
Background: Autosomal recessive congenital ichthyoses (ARCI) are a genetically heterogeneous group of rare and chronic disorders characterized by generalized skin scaling and hyperkeratosis, erythroderma, and palmoplantar keratoderma. Additional features include ectropion, eclabium, ear deformities, foul-smell, joints contractures and walking problems, recurrent infections, as well as pruritus and pain. No curative therapy is available and disease care mainly relies on daily application of topical emollients and keratolytics to the whole-body surface. Altogether, disease signs and symptoms and treatment modalities have a major impact on quality of life of patients and their caregivers. However, very few studies have evaluated the family disease burden in ARCI. Methods: We have performed an Italian multicenter cross-sectional study to assess the secondary disease impact on family members of pediatric and adult patients with ARCI, using a validated dermatology-specific questionnaire, the family dermatology life quality index (FDLQI). Disease severity was assessed by the dermatologist in each center. Results: Seventy-eight out of 82 patients who were accompanied by at least one family member filled the FDLQI. Forty-eight (61.5%) patients were aged less than 18 years. The mean FDLQI score was 10.3 (median 10), and the most affected dimensions were (1) time needed for care, (2) extra-housework, and (3) household expenditure. Higher total FDLQI score significantly correlated with more severe disease score (P = 0.003). Features associated with greater family burden included recurrent infections (P = 0.004), foul-smell (P = 0.009), palmoplantar keratoderma (P = 0.041), but also presence of scales on the face (P = 0.039) and ear deformities (P = 0.016). Conclusions: Our findings highlight the major socio-economic and psychological burden imposed by ARCI on the QoL of family caregivers. In addition, they show that global evaluation of disease impact also on family members is an essential part of patient-reported outcomes. Finally, our data underline the need to develop specific measures for family support.
Objective: This study examined whether certain demographic characteristics, caregiver strain, and coping behaviors were associated with the mental health outcomes of family caregivers of children with disabilities in Bolivia during the COVID-19 pandemic. Methods: A mixed-methods convergent study design was used with virtual interviews to quantitatively assess caregivers' demographic characteristics, caregiver strain, coping behaviors, and mental health outcomes, as well as qualitatively assess how the pandemic affected their family. Results: Approximately 32%–71% of caregivers experienced poor mental health outcomes (stress, anxiety, and depression), especially among those experiencing poor health, high caregiver strain, and those using maladaptive coping strategies. Qualitative responses revealed that they experienced several unique stressors during the pandemic that affected them and their children. Conclusions: These findings highlight the need for culturally tailored prevention and treatment interventions to help offset the adverse effects of the COVID-19 pandemic on the mental health outcomes of this at-risk population.
Background: Informal caregivers may experience a significant burden while caring for cancer patients. Little is known about how caregiver burden varies across different palliative cancer care settings and the factors influencing it. Objectives: We compared the severity of caregiver subjective stress burden (emotional impact) among caregivers of patients seen in the outpatient supportive care center (SCC) with those being cared for in the acute palliative care unit (PCU). Secondary aims were to compare other caregiver burden dimensions, quality of life, and any association of caregiver subjective stress burden to various patient and caregiver factors. Methods: Eligible patients and their informal caregivers in the SCC or PCU at a comprehensive cancer center in the USA were approached and enrolled. The Montgomery-Borgatta Caregiver Burden Scale and the Short-form 36 were used to measure burden and quality of life. Multivariate general linear regression was employed to evaluate the effect of covariates on subjective stress burden. Results: Ninety-eight dyads in the SCC and 74 dyads in the PCU were enrolled. PCU caregivers reported worse subjective stress burden (p = 0.0029) and mental health (p = 0.0299). Multivariate analysis showed correlations between subjective stress burden and caregivers' objective burden (p = 0.0136), subjective demand burden (p ≤ 0.0001), mental health (p = 0.0074), duration of caregiving (p = 0.0680), education (p = 0.0192) and with patients' anxiety (p = 0.0003) and current/recent cancer treatment (p = 0.0579). Conclusion: PCU caregivers demonstrated worse emotional burden and mental health than those in the SCC. More research is needed to tailor interventions for various caregiver burden dimensions. NCI Clinical Trial Registration Number ID: NCI-2019-01197
Background: As the United States’ population ages and health concerns rise, the family caregiver occupation will continue to be an integral part of the health care system. Aims: It is important to examine the burden that family caregivers experience so they can seek out additional training and services to maintain their own well-being. The researchers examined caregiver burden from a perspective of developmentally disabled and long-term care. Methods: The researchers examined difference in Zarit scores, guilt, burden and personal strain for 72 caregivers of people with developmental disability (DD) or people with long-term care (LTC) needs. The researchers also examined differences in these based on whether the individual was caregiving for family or “others”. Results: For DD, there were significant differences in Zarit, role strain and personal strain; caring for others has significantly lower scores on these. Role strain was significantly higher than personal strain, which was significantly higher than guilt for both LTC and DD groups. Conclusions: Given these findings, it is important to support family caregivers first and foremost with role strain, especially for those caring for family members with DD. This support could be given through personal counselling, caregiver training, non-profit social service resources, and support groups for family caregivers.
Objectives: This quasi-experimental study aimed to examine the effect of the modified transtheoretical theory of stress and coping (TTSC) program on the knowledge, burden, and quality of life of dementia caregivers. Methods: The participants comprised 60 caregivers (30 participants in each group) selected via purposive sampling, and the study was conducted between October 2018 and September 2019 in a semi-urban area of central Thailand. The experimental group received an 8-week program, while the comparison group received routine care. A self-administered questionnaire was used to collect data. To analyze the intervention's effectiveness, repeat measure ANOVA and Mann-Whitney, Friedman, and Dunn's tests were performed. Results: At the end of the program and again three months after the end of the program, the knowledge and quality of life scores for the experimental group were significantly higher (p < 0.05 and p < 0.05, respectively) than for the control group. The burden score decreased in the experimental group and increased in the control group in week 8 (p < 0.05). There was no statistically significant difference between the groups, as demonstrated by ANOVA (F[1.58] = 2.394; p = 0.127). Conclusions: Our findings show that this program had a positive effect on the caregivers' knowledge and quality of life. However, the program did not affect the caregivers' burden.
Background: The present study investigated the impact of the COVID-19-related rehabilitation services lockdown on the mental health of caregivers of children with neurodevelopmental disabilities. Methods: Between 26 March and 11 May 2020, 84 caregivers filled out ad-hoc and standardized questionnaires through an online survey in order to measure their psychological response to the emergency and lockdown as well as their levels of parenting stress, anxiety and depression. Results: Worries about COVID-19 contagion and concerns for the child left without rehabilitation programs were the greatest sources of mental health burden for caregivers. Nonetheless, only the concerns for the child were significantly associated with caregivers' reports of stress, depressive and anxious symptoms. Conclusions: These findings highlight the burden faced by caregivers of children with neurodevelopmental disabilities during the COVID-19 emergency in Italy. These families should be considered as a high-risk population that requires dedicated healthcare attention, such as promoting continuity of care by investing in tele-rehabilitation programs.
Background: This quasi-experimental study aimed to examine the effect of the modified transtheoretical theory of stress and coping (TTSC) program on the knowledge, burden, and quality of life of dementia caregivers. Methods: The participants comprised 60 caregivers (30 participants in each group) selected via purposive sampling, and the study was conducted between October 2018 and September 2019 in a semi-urban area of central Thailand. The experimental group received an 8-week program, while the comparison group received routine care. A self-administered questionnaire was used to collect data. To analyze the intervention's effectiveness, repeat measure ANOVA and Mann-Whitney, Friedman, and Dunn's tests were performed. Results: At the end of the program and again three months after the end of the program, the knowledge and quality of life scores for the experimental group were significantly higher (p < 0.05 and p < 0.05, respectively) than for the control group. The burden score decreased in the experimental group and increased in the control group in week 8 (p < 0.05). There was no statistically significant difference between the groups, as demonstrated by ANOVA (F[1.58] = 2.394; p = 0.127). Conclusions: Our findings show that this program had a positive effect on the caregivers' knowledge and quality of life. However, the program did not affect the caregivers' burden.
Background: This quasi-experimental study aimed to examine the effect of the modified transtheoretical theory of stress and coping (TTSC) program on the knowledge, burden, and quality of life of dementia caregivers. Methods: The participants comprised 60 caregivers (30 participants in each group) selected via purposive sampling, and the study was conducted between October 2018 and September 2019 in a semi-urban area of central Thailand. The experimental group received an 8-week program, while the comparison group received routine care. A self-administered questionnaire was used to collect data. To analyze the intervention's effectiveness, repeat measure ANOVA and Mann-Whitney, Friedman, and Dunn's tests were performed. Results: At the end of the program and again three months after the end of the program, the knowledge and quality of life scores for the experimental group were significantly higher (p < 0.05 and p < 0.05, respectively) than for the control group. The burden score decreased in the experimental group and increased in the control group in week 8 (p < 0.05). There was no statistically significant difference between the groups, as demonstrated by ANOVA (F[1.58] = 2.394; p = 0.127). Conclusions: Our findings show that this program had a positive effect on the caregivers' knowledge and quality of life. However, the program did not affect the caregivers' burden.
Background: This quasi-experimental study aimed to examine the effect of the modified transtheoretical theory of stress and coping (TTSC) program on the knowledge, burden, and quality of life of dementia caregivers. Methods: The participants comprised 60 caregivers (30 participants in each group) selected via purposive sampling, and the study was conducted between October 2018 and September 2019 in a semi-urban area of central Thailand. The experimental group received an 8-week program, while the comparison group received routine care. A self-administered questionnaire was used to collect data. To analyze the intervention's effectiveness, repeat measure ANOVA and Mann-Whitney, Friedman, and Dunn's tests were performed. Results: At the end of the program and again three months after the end of the program, the knowledge and quality of life scores for the experimental group were significantly higher (p < 0.05 and p < 0.05, respectively) than for the control group. The burden score decreased in the experimental group and increased in the control group in week 8 (p < 0.05). There was no statistically significant difference between the groups, as demonstrated by ANOVA (F[1.58] = 2.394; p = 0.127). Conclusions: Our findings show that this program had a positive effect on the caregivers' knowledge and quality of life. However, the program did not affect the caregivers' burden.
Background: This quasi-experimental study aimed to examine the effect of the modified transtheoretical theory of stress and coping (TTSC) program on the knowledge, burden, and quality of life of dementia caregivers. Methods: The participants comprised 60 caregivers (30 participants in each group) selected via purposive sampling, and the study was conducted between October 2018 and September 2019 in a semi-urban area of central Thailand. The experimental group received an 8-week program, while the comparison group received routine care. A self-administered questionnaire was used to collect data. To analyze the intervention's effectiveness, repeat measure ANOVA and Mann-Whitney, Friedman, and Dunn's tests were performed. Results: At the end of the program and again three months after the end of the program, the knowledge and quality of life scores for the experimental group were significantly higher (p < 0.05 and p < 0.05, respectively) than for the control group. The burden score decreased in the experimental group and increased in the control group in week 8 (p < 0.05). There was no statistically significant difference between the groups, as demonstrated by ANOVA (F[1.58] = 2.394; p = 0.127). Conclusions: Our findings show that this program had a positive effect on the caregivers' knowledge and quality of life. However, the program did not affect the caregivers' burden.
Background: Re compared the associations of socioeconomic factors with stress and depression among family members living with a dementia patient in urban and rural areas of South Korea. Methods: Data were collected from 9,730 (4,560 urban and 5,170 rural) participants in the Korean Community Health Survey from 2014-17. The variable of interest was the presence of a cohabitating dementia patient, and the dependent variables were stress and depression. Results: Family members living with a dementia patient in rural areas had a significantly lower socioeconomic status (education, household income, marital status, and employment) than those living in urban areas (p<0.001). In addition, family members living with a dementia patient in rural areas reported statistically significantly less stress and depression than did those in urban areas after adjusting for related factors(rural stress OR=0.87, 95% CI=0.80-0.95; rural depression OR=0.75, 95% CI=0.66-0.85). Female gender and a low family income were associated with stress and depression in both rural and urban areas. Age, educational attainment, number of family members, marital status, and employment status differed slightly between urban and rural areas. Conclusion: The socioeconomic factors associated with stress and depression differ slightly in the rural and urban areas of South Korea.
Background: Parents and family carers of children with complex needs experience a high level of pressure to meet children's needs while maintaining family functioning and, as a consequence, often experience reduced well-being and elevated psychological distress. Peer support interventions are intended to improve parent and carer well-being by enhancing the social support available to them. Support may be delivered via peer mentoring or through support groups (peer or facilitator led). Peer support interventions are widely available, but the potential benefits and risks of such interventions are not well established. Objectives: To assess the effects of peer support interventions (compared to usual care or alternate interventions) on psychological and psychosocial outcomes, including adverse outcomes, for parents and other family carers of children with complex needs in any setting. Search methods: We searched the following resources. • Cochrane Central Register of Controlled Trials (CENTRAL; latest issue: April 2014), in the Cochrane Library. • MEDLINE (OvidSP) (1966 to 19 March 2014). • Embase (OvidSP) (1974 to 18 March 2014). • Journals@OVID (22 April 2014). • PsycINFO (OvidSP) (1887 to 19 March 2014). • BiblioMap (EPPI-Centre, Health Promotion Research database) (22 April 2014). • ProQuest Dissertations and Theses (26 May 2014). • metaRegister of Controlled Trials (13 May 2014). We conducted a search update of the following databases. • MEDLINE (OvidSP) (2013 to 20 February 2018) (search overlapped to 2013). • PsycINFO (ProQuest) (2013 to 20 February 2018). • Embase (Elsevier) (2013 to 21 February 2018). We handsearched the reference lists of included studies and four key journals (European Child and Adolescent Psychiatry: 31 March 2015; Journal of Autism and Developmental Disorders: 30 March 2015; Diabetes Educator: 7 April 2015; Journal of Intellectual Disability Research: 13 April 2015). We contacted key investigators and consulted key advocacy groups for advice on identifying unpublished data. We ran updated searches on 14 August 2019 and on 25 May 2021. Studies identified in these searches as eligible for full-text review are listed as "Studies awaiting classification" and will be assessed in a future update. Selection criteria: Randomised and cluster randomised controlled trials (RCTs and cluster RCTs) and quasi-RCTs were eligible for inclusion. Controlled before-and-after and interrupted time series studies were eligible for inclusion if they met criteria set by the Cochrane Effective Practice and Organisation of Care Review Group. The comparator could be usual care or an alternative intervention. The population eligible for inclusion consisted of parents and other family carers of children with any complex needs. We applied no restriction on setting. Data collection and analysis: Inclusion decisions were made independently by two authors, with differences resolved by a third author. Extraction to data extraction templates was conducted independently by two authors and cross-checked. Risk of bias assessments were made independently by two authors and were reported according to Cochrane guidelines. All measures of treatment effect were continuous and were analysed in Review Manager version 5.3. GRADE assessments were undertaken independently by two review authors, with differences resolved by discussion. Main results: We included 22 studies (21 RCTs, 1 quasi-RCT) of 2404 participants. Sixteen studies compared peer support to usual care; three studies compared peer support to an alternative intervention and to usual care but only data from the usual care arm contributed to results; and three studies compared peer support to an alternative intervention only. We judged risk of bias as moderate to high across all studies, particularly for selection, performance, and detection bias. Included studies contributed data to seven effect estimates compared to usual care: psychological distress (standardised mean difference (SMD) -0.10, 95% confidence interval (CI) -0.32 to 0.11; 8 studies, 864 articipants), confidence and self-efficacy (SMD 0.04, 95% CI -0.14 to 0.21; 8 studies, 542 participants), perception of coping (SMD -0.08, 95% CI -0.38 to 0.21; 3 studies, 293 participants), quality of life and life satisfaction (SMD 0.03, 95% CI -0.32 to 0.38; 2 studies, 143 participants), family functioning (SMD 0.15, 95% CI -0.09 to 0.38; 4 studies, 272 participants), perceived social support (SMD 0.31, 95% CI -0.15 to 0.77; 4 studies, 191 participants), and confidence and skill in navigating medical services (SMD 0.05, 95% CI -0.17 to 0.28; 4 studies, 304 participants). In comparisons to alternative interventions, one pooled effect estimate was possible: psychological distress (SMD 0.2, 95% CI -0.38 to 0.79; 2 studies, 95 participants). No studies reported on adverse outcomes. All narratively synthesised data for psychological distress (compared to usual care - 2 studies), family functioning (compared to usual care - 1 study; compared to an alternative intervention - 1 study), perceived social support (compared to usual care - 2 studies), and self-efficacy (compared to alternative interventions - 1 study) were equivocal. Comparisons with usual care showed no difference between intervention and control groups (perceived social support), some effect over time for both groups but more effect for intervention (distress), or mixed effects for intervention (family function). Comparisons with alternative interventions showed no difference between the intervention of interest and the alternative. This may indicate similar effects to the intervention of interest or lack of effect of both, and we are uncertain which option is likely. We found no clear evidence of effects of peer support interventions on any parent outcome, for any comparator; however, the certainty of evidence for each outcome was low to very low, and true effects may differ substantially from those reported here. We found no evidence of adverse events such as mood contagion, negative group interactions, or worsened psychological health. Qualitative data suggest that parents and carers value peer support interventions and appreciate emotional support. Conclusions: Parents and carers of children with complex needs perceive peer support interventions as valuable, but this review found no evidence of either benefit or harm. Currently, there is uncertainty about the effects of peer support interventions for parents and carers of children with complex needs. However, given the overall low to very low certainty of available evidence, our estimates showing no effects of interventions may very well change with further research of higher quality.
Background: Dementia is a neurodegenerative syndrome that can lead to profound psychological and social challenges for people with dementia and their informal caregivers. Previous research has found positive effects of arts‐based interventions for people with dementia and caregivers that have been dyadic in nature and the present article sought to review these findings. Methods: A systematic literature review was conducted to investigate psychosocial outcomes of dyadic arts interventions. PsychINFO, Medline, Web of Science and ASSIA databases (from journal inception to March 2020) were searched as well as Google Scholar and reference lists of relevant studies were searched. Interventions were delivered to people with dementia and their caregivers in community‐based settings across five countries. Findings: Thirteen peer‐reviewed journal articles met the criteria for inclusion in this review, six focusing on performing arts and seven on visual arts. The findings suggested that choral singing and visual arts interventions may have positive effects on psychosocial outcomes for both people with dementia and their informal caregivers. Improved well‐being, quality of life, mood, enhanced identity and decreased social isolation were found in some studies. Importantly, across all studies, participants reported enjoying arts activities. This is the first review to systematically assess dyadic arts activities in a dementia context. These activities offer enjoyable and engaging experiences for many person with dementia and caregivers and were generally found to have positive results but mostly small sample size, lack of control groups and different outcome measures made comparisons challenging. Conclusions: Future research recommendations include further theoretical development, identifying key intervention components, and specifying relevant and measurable theoretically informed outcomes within dyadic interventions for this population.
Objectives: This study aims to explore the psychosocial issues faced by the primary caregivers of advanced head and neck cancer patients with the primary objective to understand their experiences within social context. Materials and Methods: Burden and QOL of caregivers (n = 15) were quantified using Zarit Burden Interview schedule and caregiver quality of life index-cancer (CQOLC), respectively. Primary caregivers (n = 10) were interviewed using semi-structured interview schedule. Thematic analysis was employed to analyse the qualitative data. Descriptive statistics was used for quantitative data. Results: Four major themes emerged: (1) Impacts of caregiving, (2) coping with caregiving, (3) caregiver's appraisal of caregiving and (4) caregiver's perception of illness. Majority (73.3%) of the caregivers had QOL below 100. The mean CQOLC score was 73.07 (SD 24.17) and most (46.7%) of the caregivers reported mild-to-moderate burden, while 27% had little to no burden. The mean ZBI score was 32.4 (SD 18.20). Conclusion: Caregiving impacts the physical, emotional, financial and social aspects of caregiver's life. Caregivers adopt active coping strategies to overcome the impacts of caregiving. Family acts as a major source of strength to manage the emotional constraints faced by Indian caregivers. Cultural beliefs and values of caregivers influence their appraisal of caregiving situation. Majority of the caregivers experienced mild-to-moderate burden while most of the caregivers scored low on QOL.
Background: With an increasing retirement age, more older adults are combining employment with informal care-giving responsibilities. However, little is known about how older workers experience care-giving activities next to their paid jobs. Objective: This study aims to fill this gap by examining how the work situation (i.e. working hours, occupational status and perceived access to human resources practices) is associated with feelings of gratification, burden and stress in care-giving. Methods: Using data from the NIDI Pension Panel Survey, we study care-giving experiences-in other words, the extent to which care-giving activities are gratifying, burdensome or stressful-of 1,651 Dutch older workers (age 60-65) who provide care at least once per week. Results: Multivariate analyses reveal that the work situation plays an explanatory role next to socio-demographic factors and indicators of the care-giving situation. Working care-givers who feel they have access to phased retirement and organisational health support experience care-giving as relatively less burdensome and stressful. Moreover, those with access to phased retirement experience relatively higher levels of gratification in care-giving. Conclusions: Our findings suggest that the availability of organisational support relates to lower levels of care-giving burden and stress, and to some extent to higher levels of gratification. Organisations thus play an important role in facilitating the combination of work and care-giving obligations in a context of longer working lives.
Background: Dementia causes substantial suffering for affected persons and their family caregivers. Because no cure is available, it is important to investigate how alternative therapies can improve life for these individuals. Methods: For the current study, persons with dementia (PwD) were recruited from a specialized Memory Clinic in Sweden to engage in a choral singing intervention for 1 hour per week for four semesters. PwD were encouraged to bring a family caregiver to the sessions; both were interviewed and data were analyzed using qualitative content analysis. Findings: The choral singing intervention appeared to become an important social context for PwD and family caregivers and had a positive impact on relationship, mental well-being, mood, and memory. The intervention appeared to act as an enriched environment for all participants. Conclusions: Choral singing interventions for PwD and their family caregivers is a simple means to create a social context and improve general well-being.
Background: Family caregivers faced unprecedented circumstances and experienced increased levels of stress during the COVID-19 pandemic. Resourcefulness can minimize the effect of stress on health outcomes. Objectives: The purpose of this study was to examine the associations between caregiving stress during the pandemic, resourcefulness, and self-rated health and assess the mediating effect of resourcefulness. Methods: A convenience sample of 70 family caregivers of adults with chronic and/or disabling conditions was recruited using social media groups and professional networking platforms. Data were collected using an online survey and analyzed using linear regression. Mediation analysis was conducted using the PROCESS macro. Results: Higher levels of caregiving stress during the pandemic and lower levels of resourcefulness were associated with worse self-rated health, while controlling for age, employment status, and weekly caregiving hours. Resourcefulness mediated the relationship between caregiving stress and self-rated health. Our findings highlight the importance of assessing the psychological impact of the pandemic on family caregivers’ outcomes. Conclusions: Resourcefulness skills can be targeted to improve the health and well-being of family caregivers during and beyond the pandemic.
Background: Across the world, many young people are supplying unpaid, informal care. There is growing evidence of the impact of this caring role on the lives of young informal carers, however there has been little quantitative analysis of the mental health impacts. This research aimed to estimate the effect of informal caring at age 14/15 years on mental health at age 18/19 years. Method: Data was drawn from Waves 5, 6, 8 (2012-2018) of the Longitudinal Study of Australian Children. Effects of caring on mental health were assessed using augmented inverse probability weighting, with adjustment for potential confounders, and using the Kessler-10 measure of mental health. Caring was assessed with both a binary (any caring vs none), and a three category variable (no caring, less than daily caring, daily caring). Multiple imputation was carried out using chained equations, and analysis was conducted on both complete case (n=2165) and the imputed dataset (n=3341). Outcomes: In complete case models, any caring at age 14/15 years was associated with poorer mental health at age 18/19 years compared to those reporting no caring, with an average treatment effect (ATE) of 1.10 (95%CI 0.37, 1.83). The ATE of daily caring compared to no caring at age 14/15 years of age was 1.94 (95%CI 0.48, 3.39), and caring less than daily (compared to no caring) was associated with a treatment effect of 0.83(95%CI 0.06, 1.61). Associations were robust to several sensitivity analyses. Conclusions: These results suggest there is a mental health impact of caring in adolescence on mental health four years later. This highlights the need for support for young informal carers, particularly for those providing more intensive caring.
Purpose: This study aims to explore the level of stress perceived and quality of life (QOL) by gynaecologic cancer (GC) patients and family caregivers’ dyads. Methods: In this cross-sectional study, 86 dyads were recruited from the gynaecological oncology department of a general hospital in Taichung City, Taiwan. The patients and family caregivers completed a sociodemographic information sheet, the Perceived Stress Scale, and the Taiwanese version of World Health Organization Quality of Life-BREF questionnaire. Data were analysed using descriptive statistics and Pearson's correlations. This study used the actor-partner interdependence model (APIM) with distinguishable dyads to examine the effect of patients' and caregivers' perceived stress on QOL in patient-caregiver dyads. Results: GC patients' and caregivers' level of QOL was influenced by their own stress level (actor effect). Caregivers' stress was statistically negatively associated with the patients’ QOL (partner effect); however, there were no partner effect from GC patients to caregivers. Both patients and family caregivers with higher perceived stress had poorer QOL. Therefore, we identified that stress has some level of actor and partner effects on QOL in GC patient-family caregiver dyads. Conclusions: Family caregivers' stress displayed both actor and partner effects within the first year of the cancer diagnosis; therefore, patient-and caregiver-based interventions, such as stress reduction strategies, should be developed to enhance patients' and caregivers’ QOL and stress management ability.
Introduction: Constructive coping strategies play an important role during childcare processes. We examined the determinants of coping strategies used by parents raising children with intellectual disabilities or other developmental disorders and by parents with typically developing children. Methods: The cross-sectional study was carried out in Cracow. The participants in the survey were 507 caregivers. The research used the Mini-COPE Inventory for Measurement-Coping with Stress and the General Self-Efficacy Scale. Results: Parents of disabled children and parents of children without disabilities used the strategy of active coping most often and the strategy of substance use the least. Sociodemographic variables such as age, place of residence, education, and sociodemographic situation determined the type of strategy for dealing with stress. The statistical analysis showed the relationship between parents' self-efficacy and type of coping strategy. Conclusion: There is a need to develop individualized family psychological support programs to stimulate caregivers' constructive coping strategies.
Objectives: This pilot study aimed to assess the feasibility, acceptability, and preliminary effects of a family-based psychoeducational intervention for patients undergoing hemodialysis (HD) and their family members. Methods: This was a single-group (six dyads), six-week, pre-post pilot study, delivered in a multifamily group format. Feasibility was based on screening, eligibility, content, retention, completion, and intervention adherence rates. Acceptability was assessed at post-intervention through a focus group interview. Self-reported anxiety and depression and patients' inter-dialytic weight gain (IDWG) were also measured. The screening (93.5%), retention (85.7%), and completion (100%) rates were satisfactory, whereas eligibility (22.8%), consent (18.4%), and intervention adherence (range: 16.7-50%) rates were the most critical. Results: Findings showed that participants appreciated the intervention and perceived several educational and emotional benefits. The results from the Wilcoxon Signed-Rank Test showed that a significant decrease in anxiety symptoms (p = 0.025, r = 0.646) was found, which was followed by medium to large within-group effect sizes for changes in depression symptoms (p = 0.261, r = 0.325) and patients' IDWG (p = 0.248, r = 0.472), respectively. Conclusions: Overall, the results indicated that this family-based psychoeducational intervention is likely to be feasible, acceptable, and effective for patients undergoing HD and their family caregivers; nonetheless, further considerations are needed on how to make the intervention more practical and easily implemented in routine dialysis care before proceeding to large-scale trials.
Background: Mental health carers contribute a unique set of perspectives and lived experiences to research; however, national research ethics guidelines do not specifically address the issues that affect informal carers as participants. Objective: This study sought to explore Australian mental health consumer and carer views on the ethical conduct of research involving mental health carers. Design: A public forum (n = 14; consumer = 5, carer = 9) and a subsequent series of interviews (n = 10; consumer = 5, carer = 4, both = 1) were conducted to investigate consumer and carer views on mental health research ethics. Data collection and analysis drew strongly on methodological features of grounded theory. Results: Conducting research involving carers and consumer‐carer relationships raises potential concerns related to story ownership. Lived experience stories have shared and separate elements; thus, it is important to consider potential risks to the privacy of non‐participants and of social harm to participants' relationships when conducting research in this space. These risks could be minimized and managed through communication between researchers and participants, and within relationships. Conclusions: When conducting research involving carers and consumer‐carer relationships, researchers may need to facilitate the negotiation of information‐sharing boundaries within relationships and the safe and confidential telling of shared stories.
Background: Family members of patients admitted to the intensive care unit must tolerate high levels of stress, making them emotionally and physically vulnerable. However, little is known about the kinds of stress family members may experience. Objective: To explore perceived stress in the families of patients admitted to the intensive care unit. Methods: This qualitative content analysis study involved 23 family members of patients admitted to intensive care units. Participants were drawn from family members of patients hospitalized in intensive care units of 3 public and 2 private hospitals. Data were collected through semistructured interviews. Results: Three themes emerged from the data: "distrust," "repeated stress exposure," and "a whirlpool of persistent negative emotional-physical state." The first theme had 2 categories: "fearful mindset" and "negative beliefs about professional caregivers." The second theme also had 2 categories: "fear of the future" and "sustained accumulation of tensions." The third theme had 3 categories: "impaired mental health," "impaired physical health," and "impaired family function." Conclusions: The findings of this study may help critical care nurses better understand the nature and sources of family stresses during a patient's intensive care unit stay. Supervisory nurses should alert their staff to these issues so that family care programs can address them, thereby reducing family members' risk of posttraumatic stress disorder and post–intensive care syndrome-family.
Objectives: Identify 2-4 factors sociodemographic, caregiving, or economic factors associated with cancer caregivers' mental health outcomes during hospice. Evaluate how financial well-being affects the mental health of cancer caregivers and discuss implications for policy and practice. Background: End-of-life caregiving is associated with poorer mental health which may impact bereavement. Research Objectives To examine the sociodemographic, caregiving, and economic characteristics of mental health among hospice family caregivers of cancer patients. Methods: Informal caregivers were purposively recruited from hospices from four states. Participants completed demographic, caregiving, and mental health survey items. The Medical Outcomes Social Support Survey (α=0.85), Zarit Caregiving Burden Inventory (α=0.89), PROMIS mental health subscale (α=0.80), Hospital Anxiety and Depression scale (anxiety- α=0.88; depression α=0.80), and the Positive Affect and Well-being Scale (α=0.94) were administered. Hierarchical linear regression models (base models: sociodemographic factors, final models: sociodemographic and caregiving factors) were generated in SPSS version 24 with significance set at p<0.05. Results: Data from 102 informal caregivers were analyzed. Participants had a mean age of 58.93 years (SD=14.24). Majority of participants were female (72.55%), spouses (51.96%), and non-Hispanic White (80.00%). Over 60% cared for patients for less than 2 years, 51.96% had less than a college degree, and 46.53% were not employed. Most (77.78%) described their financial situation as comfortable or more than adequate. Controlling for sociodemographic and caregiving characteristics, higher financial satisfaction (B=1.47), social support (B=0.05), and lower caregiving burden (B=-0.11) were associated with more positive overall mental health (R2=0.56, ΔR2=0.27, p<0.001). Younger age (B=-0.11) and higher caregiving burden (B=0.17) were associated with increased anxiety (R2= 0.46, ΔR2=0.15, p<0.001) while financial satisfaction (B=-1.26), lower social support (B=-0.04), and higher caregiving burden (B=0.16) were associated with depression (R2=0.47, ΔR2= 0.26, p<0.001). Less proximal caregiving relationship (child vs. spouse; other relationship vs. child; B=2.14), financial satisfaction (B=2.03), social support (B=0.10), and lower caregiving burden (B=-0.26) were associated with greater well-being (R2=0.48, ΔR2=0.27, p<0.001). Conclusion: Financial satisfaction remains a major factor of caregivers' psychological well-being even after controlling for other variables. Implications for Research, Policy, or Practice This study identifies subgroups of caregivers who may benefit from additional hospice support services.
Background: Despite the importance of carers supporting the lives of people with mental illness, there are limited studies investigating the well‐being and needs of Malay carers in multicultural Singapore. The Malays consist of 13.4% of Singapore's population. Methods: A mixed methods qualitative dominant research approach was used to explore the well‐being and needs of Malay carers in a voluntary welfare organisation. The Kessler‐10, Friendship Scale and Carers' and Users' Expectations of Services—Carer version were used to assess the needs and well‐being of 17 Malay carers. Results: Findings show that Malay carers experienced poor well‐being and had numerous unmet needs. Four main themes were found: (a) Concerns related to relatives with mental illness, (b) Mental health practices related to carers, (c) Holistic support for carers and (d) Preference for greater spiritual support in mental health. Recovery‐oriented mental health practice implications are discussed. Conclusion: Spirituality of Malay carers needs to be given greater consideration in recovery‐oriented mental health services.
Objectives: This study examines WeChat use among family caregivers of persons living with schizophrenia (PLS), its socio-demographic correlates and relationship to caregiving experiences, including perceived stress, stigma, coping, social support, family functioning, and caregiving rewarding feelings. Methods: A cross-sectional study was conducted with 449 family caregivers of PLS. Face-to-face interviews were conducted to collect information on socio-demographics, WeChat use, and a range of caregiving experiences. Results: The results indicated that nearly half (46.8%) of caregivers were WeChat users. WeChat use was associated with higher education (OR = 3.34–9.88, 95% CI : 2.01, 24.77), and younger age (OR = 0.94, 95% CI : 0.92, 0.97). Compared to non-users, WeChat users reported less stigma (b = −1.84, 95% CI : −3.40, −0.28), higher social support (b = 6.62, 95% CI : 2.73, 10.50), better family functioning (b = 1.08, 95% CI : 0.38,1.78), and more caregiving rewarding feelings (b = 3.93, 95% CI : 2.01, 5.85). WeChat use among caregivers of PLS was lower than that found in the general population, which warrants specific attention to this group with alternative support and resources provided to them. Conclusions: WeChat use is associated with more favorable caregiving experiences, and thus serves as a promising medium for further health intervention to support family caregivers, and improve their well-being.
Objective: This paper aims to understand the experiences of family caregivers with dependent older adults in Brazil and the consequences of caring for dependent older adults in the family caregiver’s life. Methods: This is a qualitative multicenter study employing dialectical hermeneutics as a theoretical framework. In-depth interviews were conducted with 84 family caregivers in Brasília, Rio de Janeiro, Belo Horizonte, Fortaleza, Teresina, Porto Alegre, and Araranguá, and Manaus. Findings: The thematic analysis yielded three categories: motivations for taking on the caregiving role, influences on the family caregiver’s life, coping, and self-care modalities. The care assumed is influenced by affective relationships with older adults and ethical and moral responsibilities. The influences are related to the lack of preparation for caregiving, financial hardship, restricted freedom, and physical and mental health problems. Coping strategies were religion, spirituality, turn-taking between family caregivers, and learning about the tasks. Conclusions: Women predominate in caregiving due to cultural, ethical, and moral reasons. However, family caregivers often lack guidance and require protection and a support network.
Objective: Informal caregivers of people with lung cancer often experience a substantial care burden and associated negative consequences due to the often‐contracted course of the disease. The objective of this review was to systematically examine the evidence on the factors associated with lung cancer caregiver distress. Methods: Five databases (MEDLINE, CINAHL, EMBASE, PsychINFO and Web of Science) were searched for studies investigating factors associated with distress amongst caregivers of people with lung cancer. Empirical studies published up to July 2020 were included if they measured distress using a valid and reliable measure and examined its association with at least one other factor, with a sample of 50 or more caregivers. Results: Thirty publications describing 27 studies (16 cross‐sectional; 6 prospective; 8 intervention) involving 3744 caregivers (primarily spouse or adult child) were included. A narrative synthesis of the findings is presented due to heterogeneity in study design, variables measured and analyses conducted. Patient variables associated with greater distress included: stage of cancer and quality of spousal relationship. Caregiver variables associated with higher distress included: social support, coping strategies and self‐efficacy. Conclusions: Several variables were associated with distress amongst lung cancer caregivers. Understanding these variables could inform the development of interventions that will enable caregivers to care effectively while maintaining their own well‐being. Screening for distress among caregivers may identify those caregivers who would benefit from early intervention.
Objectives: The scope of this study was to investigate the prevalence of psychotropic drug use and its association with the overburden felt by family caregivers of Psychosocial Care Center users. This is a cross-sectional study performed with 537 family caregivers in the 21st Health Region of the State of Rio Grande do Sul. Background: The prevalence of psychotropic drug use was calculated with a 95% confidence interval (95%CI) and the heterogeneity tests were performed between the strata of each independent variable. Methods: The association between psychotropic drug use and overburden was tested using Poisson regression with the calculation of the adjusted prevalence ratios. Results: The prevalence of psychotropic drug use was 30%, with higher consumption among women (40%), individuals aged 41 -50 years (42.06%), with 5 to 8 years of schooling (37.57%), with income between 0.5 and 1 minimum wage per capita (34.43%), individuals who did not share caregiving duties (35.53%) and those who cared for patients with a major degree of independence (36.67%). The overburden felt was in direct relationship with the outcome, namely the higher the level of overburden the greater the prevalence of psychotropic drug use, reaching 60.1% at the highest level and remaining strongly associated with the outcome even in the adjusted analysis.
Introduction: The aim of this study is to analyse different ways of participation during the development of a clinical guideline to improve the early detection of psychosis and to deploy a comprehensive treatment plan to improve prognosis and social integration. Materials and method: The clinical guideline was developed using the ADAPTE method with the participation of 40 authors and 80 external reviewers. The process was divided into three major phases: set up, adaptation and finalization. During adaptation and completion, a total of 44 patients and 18 family caregivers were involved. Results and conclusions: The different roles assumed by the patients and their family caregivers were described, depending on the panel in which they participated, with diverse grades of complexity: a user as author, integration of the results of qualitative research with the participation of local users and family caregivers, 13 users as individual external reviewers and the participation of users and caregiver organizations in the external review. In the guideline, contributions from patients during the qualitative research were included in an innovative way, placing them just behind the recommendations. On the other hand, the results of the family caregivers' study were included in a specific area of uncertainty. Further, the expressed point of view was considered as the collective demands of users and family caregivers' organizations in the cost‐benefit analysis made by the organizing committee. There were diverse ways to conduct direct patient participation during the guideline development, ensuring that their individual experiences contributed significantly to the final version.
Background: In Japan, there is a high incidence of family members caring for their elderly. To facilitate this, caregivers often quit their jobs, work reduced hours, and forfeit leisure activities. Objectives: This study examined the relationship between the mental health of the caregivers and the sacrifices and adjustments they make to care for the elderly. Methods: A cross-sectional survey was conducted with responses from 171 caregivers. Referencing Pearlin’s stress process model, the relationship among five types of work change, four types of leisure activity quitting, caregivers’ subjective care burden, and depression were analyzed using t-test and multiple regression analysis. Methods: Caregivers who quit their work or other home activities had significantly more daily living care responsibilities than those who did not. Moreover, caregivers who gave up leisure activities had a greater sense of subjective care burden than those who did not. The experience of giving up peer activities and taking leave of absence from work was significantly associated with increased depressive symptoms. Being a part-timer or financially prosperous was associated with good mental health. Conclusions: To support family caregivers, it is essential to reduce the burden of long-term care and provide financial help and an environment where they interact with their peers, and their moods can be enhanced.
Background: Anorexia nervosa is a serious health problem worldwide. The literature widely recognises the roles of the family and caregivers in modulating the onset, development, maintenance and treatment of this disorder. However, few studies have addressed the problem from the perspective of maternal caregivers. Aims: This study aims to fill this gap by exploring how the meaning given to the term ‘eating disorder’ influences how mothers communicate with each other about a family member's health problems, how they present symptoms and how this problem is managed. Method: A narrative research project was conducted to capture the mothers’ experiences of living with a daughter diagnosed with anorexia nervosa. In particular, four semi-structured interviews were conducted to explore the ways in which they made sense of the disorder, their roles in treatment and their daughters’ treatment experiences. Results: The results show that the ways in which mothers characterise the disease guide their method of tackling it and the relationship they have with their daughter, as well as how they see their role in the care and treatment process. Conclusions: Anorexia is experienced as something that is uncontainable, and a dimension of its accommodation characterises the relationship between mothers and daughters receiving treatment for the disorder. Treatment is accompanied by a delegating dimension, and the clinical implications are discussed in this study.
Aims and objectives: To explore how mental healthcare professionals' experience and evaluate the use of Family‐Centred Support Conversation Intervention. Background: Mental health professionals working in the community mental health service provide treatment, care and support to young adults suffering from mental illness. Young adults suffering from mental illness are dependent on other family members and live close to the family. The Family‐Centred Support Conversation promotes healing and alleviates the suffering of the family. Design and methods: A qualitative explorative design was used. Individual interviews with health professionals (n = 13) were conducted in Norway and analysed using a phenomenographic approach. The COREQ checklist was used. Results: Three descriptive categories emerged: A new tool in the toolbox, the family as a conversational partner and Implementing the intervention, with seven conceptions. The mental health professionals had no previous routine for family support. The conversations helped them to structure the involvement of family members. Having the family as a conversational partner together with the patients was considered both somewhat new and rewarding but also challenging. The mental health professionals described a need to adjust the intervention. Conclusions: The Family‐Centred Support Conversation was described as a complement to care, as usual, structuring the involvement of families. The knowledge exchange between the families and the mental health professionals may create a context of changing beliefs, strengths and resources. Relevance to clinical practice: Clinical practice is challenged to work on establishing a mindset; whereby, the family is regarded as a resource with important skills and life experience. The family should be offered individualised support and follow‐up, and FCSC may be a relevant intervention.
Background: Shared decision making (SDM) in mental health may contribute to greater patient satisfaction and is sometimes associated with better health outcomes. Here, SDM should not only involve service users and clinicians but also involve the service users' caregivers. Aim: This study aimed to achieve better insight into the current SDM patterns of triads of service users, caregivers and clinicians in inpatient mental health care and the three parties' expectations towards the prospects of triadic SDM. Design: The current research uses data from a representative cross‐sectional study on caregivers in psychiatric inpatient treatment. We analysed data on n = 94 triads of service users, their caregivers and their clinicians. Results: All three parties acknowledge caregivers to be of great support to monitor the progress with mental disease. The caregiver's role during consultations is most often described as being an expert, receiving or providing information and supporting service users. However, caregivers at times try to seek support for themselves during caregiver‐clinician interaction, or their behaviour was described as unhelpful. The potential prospects of caregiver involvement are clearly acknowledged despite the low implementation of caregiver involvement in this sample (only in one‐third of the cases). Conclusion: Triadic SDM rarely takes place in routine inpatient care. First, there should be a focus on interventions aiming at inviting caregivers to consultations. Only in the second step should a better conceptualisation of triadic SDM be undertaken. Public Contribution: Early results were discussed with a local peer support group for caregivers of individuals living with mental illness.
Background: Both advanced cancer patients and their family caregivers experience distress and have a range of concerns after cancer diagnosis. However, longitudinal studies on this topic have been lacking. Aim: To investigate concerns in both patients with advanced lung cancer and their family caregivers longitudinally from diagnosis. Design: A multi-center prospective questionnaire-based study. Setting/participants: We recruited patients with newly diagnosed advanced lung cancer and their family caregivers at 16 hospitals in Japan. We prospectively assessed the prevalence of their concerns using the Concerns Checklist and investigated the associations between their concerns and mental status as well as quality of life until 24 months after diagnosis. Results: A total of 248 patients and their 232 family caregivers were enrolled. The prevalence of serious concerns was highest at diagnosis (patients: 68.3%, family caregivers: 65.3%). The most common serious concern was concern about the future in both groups at diagnosis (38.2% and 40.5%, respectively) and this remained high in prevalence over time, while the high prevalence of concern about lack of information improved 3 months after diagnosis in both groups. Approximately one-third of patient-family caregiver dyads had discrepant reports of serious concerns. The presence of serious concerns was significantly associated with anxiety and depression continuously in both groups. Conclusions: The majority of advanced lung cancer patients and their family caregivers have serious concerns from diagnosis, which is associated with their psychological distress. The spectrum of concerns alters over the disease trajectory, warranting efficient tailored care and support for both groups immediately after diagnosis.
Background and Objectives: As informal caregiving becomes prevalent, its consequences for caregivers' cognitive and socioemotional functioning gain more importance for society. There are inconsistent findings regarding the direction of the impact of caregiving-whether caregiving maintains or compromises functioning-and the impact of time-whether the effects accumulate or are stable. In this study, we elucidated 3 time effects of caregiving-concurrent, cumulative, and lagged effects-on cognitive and socioemotional functioning. Research Design and Methods: We used data from Wave 1 (2002–2003) to Wave 8 (2016–2017) in the English Longitudinal Study of Ageing (ELSA) and latent growth curve models with the time-varying predictor to investigate 3 time effects of caregiving on cognitive function (memory and executive function) and well-being (life satisfaction and quality of life). Results: Over and beyond age effects, current caregiving (concurrent effect) was related to worse well-being and better delayed recall. Little robust cumulative effect was found on cognition and well-being. In addition, there were significant and differential lagged effects of caregiving after controlling for concurrent and cumulative effects; that is, caregiving was related to worse well-being and better memory functioning 2–4 years later. Discussion and Implications: The differential concurrent and lagged effects of caregiving on cognitive and socioemotional functioning suggest separate mechanisms for different domains of functioning. The nonsignificant cumulative effects but significant lagged effects imply that even one-time caregiving has long-term (2–4 years) consequences for the caregiver's future functioning, and the mechanism of long-term caregiving effects may be more qualitative than quantitative.
Objectives: The aim of this article is to conceptualise the phenomenon of therapy-related parental stress in parents of children with a physical disability. Methods: Three models related to parental stress were reviewed, i.e., general parental stress, burden of caregiving in parents of children with physical disabilities, and experiences of these parents with their child's therapy. Findings: The proposed definition of therapy-related parental stress is "the subjective stress and subsequent changes of functioning and health experienced by a parent of a child with a physical disability in response to paramedical therapies (i.e., physical, occupational, and/or speech and language therapy)". A theoretical model is proposed to describe the process of therapy-related parental stress. Available questionnaires will most likely not be valid and responsive to capture the (changes in) stress parents experience related to therapy their child receives. This article provides a first definition of therapy-related parental stress and a theoretical model to visualise the processes with regard to this topic. Empirical testing of the presented components and their coherence is needed to confirm or improve the model. A questionnaire that specifically measures the concept of therapy-related parental stress is needed, along with evaluating therapy-related parental stress in clinical practice and research. It is imperative to recognise paramedical therapies (i.e., physical, occupational, and speech and language therapy) as a potential stressor for parents of children with a physical disability, both in paediatric rehabilitation practice and research. Conclusions: A definition and theoretical model of therapy-related parental stress is proposed and the need for measures to evaluate this phenomenon is argued. The authors provide a starting point for the evidence base of the concept of therapy-related parental stress.
Objective: The purpose of this study was to provide an in-depth analysis of the components and outcomes of telehealth interventions for family caregivers of individuals with chronic health conditions. Methods: A systematic review of 17 databases was conducted for randomized controlled trials published between January 2002 and January 2017. Interventions were analyzed based on type of telecommunication modality, caregiver and care recipient characteristics, intervention components, and caregiver outcomes. Results: A total of 57 articles met criteria for inclusion. Telephone was the most frequently used mode of telehealth delivery and focused primarily on caregivers of older adults with dementia and stroke. Skills training was the most prevalent treatment strategy across telephone, web, and combined telephone and web modalities. Improved psychological functioning was reported most frequently across telehealth modalities. Conclusion: Telehealth is an effective tool in delivering caregiver interventions and leads to significant improvement in caregiver outcomes. Telephone was used most often to deliver cognitive-behavioral and psychoeducational strategies as compared to web and combined telephone and web modalities. Further research is needed to examine the effects of telehealth interventions on caregiving skills and self-efficacy, as well as health outcomes.
Aims: To identify factors associated with hope in family carers of persons living with chronic illness. Design: A systematic review of quantitative and mixed method studies on hope in carers of persons living with chronic illness. Data Sources: Five electronic databases (Medline, Cumulative Index to Nursing and Allied Health Literature, Web of Science, ProQuest Dissertations and PsycINFO) were searched from inception to 13 July 2020. Review Methods: Inclusion criteria were the following: (a) study population of adult (18 years of age and older) carers of persons living with chronic illness, (b) hope was measured as a variable, (c) reported factors associated with hope, (d) employed either quantitative or mixed methods design, (e) written in English and (f) was published in peer reviewed journals. All included studies were evaluated for quality using the Mixed Method Appraisal Tool. Results: Twenty-six studies were included in the systematic review. Quality of life, physical and mental health, life satisfaction and the hope of care recipients were found to be positively associated with hope. Carer's coping increased (self-efficacy and caregiver preparedness) as hope increased with a decrease in maladaptive coping strategies. Anxiety, depression, distress, grief and guilt were negatively associated with carers' hope. Carers' hope did not appear to be associated with carer or care-recipient demographic variables. Conclusion: Carers' hope appears to be associated with the carers' over all positive health. The factors associated with carers' hope provide potential areas to focus intervention development such as strategies that increase self-efficacy. More research is needed to clarify if factors such as stage of disease and resilience are associated with hope. Research on carers' hope assessment and intervention development should also focus on factors associated with hope. Impact: The findings underscore the need to assess and work with carers of persons living with chronic illness to enhance their hope.
Objective: Black Americans are disproportionately affected by cancer and chronic diseases. Black patients with cancer and their family caregivers may concurrently experience symptoms that influence their wellbeing. This study investigates the influence of mental and physical symptom distress on quality of life (QOL) among Black Americans with cancer and their family caregivers from a dyadic perspective. Methods: One hundred and fifty‐one dyads comprised of a Black American with breast, colorectal, lung or prostate cancer and a Black family caregiver were included in this secondary analysis of pooled baseline data from three studies. Self‐reports of problems managing 13 symptoms were used to measure mental and physical symptom distress. Descriptive statistics and the actor‐partner interdependence model were used to examine symptom prevalence and the influence of each person's symptom distress on their own and each other's QOL. Results: Fatigue, sleep problems, pain and mental distress were prevalent. Patients and caregivers reported similar levels of mental distress; however, patients reported higher physical distress. Increased patient mental distress was associated with decreased patient QOL (overall, emotional, social, functional). Increased patient physical distress was associated with decreased patient QOL (overall, physical, emotional, functional) and decreased caregiver emotional wellbeing. Increased caregiver mental distress was associated with decreased caregiver QOL (overall, emotional, social, functional) and decreased patient overall QOL. Increased caregiver physical distress was associated with decreased caregiver QOL (overall, physical, functional), decreased patient emotional wellbeing, and better patient social wellbeing. Conclusions: Supporting symptom management in Black patient/caregiver dyads may improve their QOL.
Background: Reported rates of mental illness continue to climb amongst young Australians. In a family environment the carers of these young people play a highly influential role in their recovery process, however this responsibility can also have significant emotional, financial and health impacts on carers. Methods: This paper details the findings of an evaluation project examining the impact and effectiveness of a newly developed and implemented Family Peer Support Work model. Results: Benefits were found which included: family care-givers receiving emotional support and empathy; reduced stress, loneliness, isolation and stigma; bridging between the family and the clinical care team; helping families to navigate through the complexities of the care system; and connecting families to other services. Conclusions: Clarity on role definition for the FPSWs evolved over the course of implementation along with a clearer articulation of the model of care and emergent knowledge on useful elements of training, ongoing professional development, mentoring and wellbeing.
Background: A caregiver support group was initiated at the Schizophrenia Research Foundation, Chennai, India. Objective: The study aimed to evaluate this service for 100 caregivers of persons with dementia, identify the needs met and explore the facilitating factors and barriers for participation. Findings: The support group met the information, emotional and counselling needs of caregivers. Trust between members was a key facilitating factor. Lack of help at home to support the person with dementia, distance from the venue and work commitments were barriers to caregiver participation. Conclusion: The study found that support groups fulfil an important need for caregivers by providing information and peer support.
Background: An emerging body of international research suggests family caregivers may be a high-risk group for suicide, but the evidence has not been synthesised. Methods: Forty-eight peer-reviewed journal articles were included in this review, spanning low-, middle-, and high-income countries and a variety of illnesses and disabilities. Findings: The proportion of caregivers experiencing suicidal ideation ranged from 2.7% to 71%, with evidence of suicide attempts, deaths by suicide, and deaths by homicide-suicide also reported. Risk and protective factors varied across studies and there was little consideration of differences by caregiving relationship, type of illness/disability, or country. Conclusions: There is sufficient evidence to warrant concern for caregivers around the world and prompt action in policy and practice, but more rigorous research is required to draw clear, nuanced conclusions about risk and inform evidence-based prevention and intervention.
Background: There is increasing evidence that subjective caregiver burden is an important determinant of clinically significant anxiety in family carers. Objectives: This meta-analysis aims to synthesise this evidence and investigate the relationship between subjective caregiver burden and anxiety symptoms in informal caregivers. Methods: We searched PubMed, CINAHL and PsycINFO up to January 2020. Combined estimates were obtained using a random-effects model. After screening of 4,312 articles, 74 studies (with 75 independent samples) were included. Findings: There was a large, positive association between subjective caregiver burden and anxiety symptoms (r = 0.51; 95% CI = 0.47, 0.54; I2 = 0.0%). No differences were found in subgroup analyses by type of study design (cross-sectional vs. longitudinal), sampling, control of confounders or care-recipient characteristics. Subjective caregiver burden is an important risk factor for anxiety in informal caregivers. Conclusion: Targeting subjective caregiver burden could be beneficial in preventing clinically significant anxiety for the increasing number of family carers worldwide.
Background: Family support during stroke treatment at home is crucial. However, post-stroke patients’ long-term care will be a problem for families, reducing the level of life satisfaction and physical burden for caregivers. Furthermore, families may experience depression. AIM: Analyzing family conditions related to physical, psychological, and spiritual conditions that receive home-based health worker interventions. Methods: Study implemented systematic review design with Prisma guidelines, initially with the identification of article sources, following by article screening, checking the eligibility of studies then appraised the selected articles. Three databases were used, Ebsco, PubMed, and PROQUEST. Only studies using quasi-experimental, pre-experimental, and RCT designs were included in this study. Furthermore, those articles were published between 2014 until 2019, full type article and conducted anykind of home intervention for stroke patients and/or family member. Keywords that were employed “Stroke, Apoplexy, Cerebrovascular Accident, Vascular Accident, Home Care Services, home care, Home Health Care, Domiciliary Care, Physical, Physics, Psychological Factors, Psychological Side Effects, Psychosocial Factors, Spirituality.” Totally, 19,528 articles were obtained. Finally, only six eligible articles met review requirements. Results: Implementation of home-based care lowered the physical fatigue of the family. In psychological responses showed that home-based care could reduce the incidence of depression and anxiety levels. Another impact was that the family felt helped because patients could more independently do their activities. Furthermore, the family always supported to motivate the patients to do their daily tasks. Conclusion: Home-based interventions for stroke patients can reduce depression, anxiety, and fatigue for the family caregiver.
Background: The objectives of the present study were to determine the prevalence of older adults with hemodialysis (HD) abuse by family caregivers and the factors affecting it. Method: This is a correlational-causal study, which is conducted in 2018 in Iran. The sample size was 367 in both groups (the older adults and their family caregivers). Data collection was done using an individual-social information questionnaire for the older adults under hemodialysis and their family caregivers, the questionnaire of elder abuse by family caregivers to the older people under hemodialysis, Zarit Burden Interview and the scale of instrumental activities of daily living (IADL). Data were analyzed by the structural equation model (SEM) method. The Fitness of proposed pattern was measured using the following indexes: chi-square/degree of freedom ratio (CMIN/DF), Normed Fit Index (NFI), comparative fit index (CFI), goodness of fit index (GFI), and standardized root mean squared residual (SRMR). The significant level in this study was considered p < 0.05. Results: The results of the present study showed that more than 70 % of the older adults suffer from elder abuse by family caregivers on average. The highest median elder abuse was related to emotional misbehavior (21.46 ± 6.09) and financial misbehavior (19.07 ± 5.33), respectively. Moderate care burden was experienced by 63.2 % of caregivers. The percentage of older women and men, who needed help with daily activities was 81.4 and 80.5 %, respectively. The results showed that the caregivers’ level of education and care burden with standard beta coefficient of -0.251 and 0.200 and the educational level of older adults and IADL with the best beta coefficient of -0.299 and − 0.234, had the highest regression effect on elder abuse respectively. According to the results, the model-fit indices of the hypothesized model was meet the criteria, with the NFI = 0.951, GFI = 0.970, CFI = 0.967, and SRMR = 0.041. The outcome was suitable for the recommended level, so the hypothetical model appeared to fit the data. Conclusions: The results of the present study showed that the prevalence of elder abuse by family caregivers among the older adults under hemodialysis is high. Providing psychological counseling can reduce the consequences of elder abuse.
Background: Though many studies have explored differences between spouses and adult children in dementia care, empirical evidence is lacking on racial- and ethnic-minority populations. Methods: To fill this research gap, this study examined care tasks, caregiver burden, and depressive symptoms of Chinese spouse and adult-child caregivers in dementia care. Guided by the stress process model, this study asked 3 questions: Do spouse and adult-child caregivers take up different care tasks and experience different levels of caregiver burden and depressive symptoms? Does gender moderate the differences between spouse and adult-child caregivers? Whether care tasks and burden mediate the association between being a spouse/adult-child caregiver and depressive symptoms? Data were collected from a questionnaire-based survey of Chinese Americans who provided care for their family members with dementia in New York City. The analytical sample included 126 Chinese spouse or adult-child caregivers. Care tasks was indicated by intensity of 8 types of care tasks. Caregiver burden and depressive symptoms were measured by Zarit's Burden Interview and the 10-item Center for Epidemiologic Studies Depression Scale. Linear regression, interaction term (spouse/adult-child caregiver by gender), and path analysis were conducted to address the 3 questions. Results: The results of linear regression show no significant difference in care tasks between the 2 groups, but spouse caregivers had significantly higher levels of caregiver burden and depressive symptoms than adult children. Wives had higher levels of caregiver burden and depressive symptoms than husbands, daughters, and sons. Caregiver burden mediated the association between being a spouse caregiver and higher depressive symptoms, whereas care tasks did not shape such association. Conclusions: This study highlighted the emotional stress of Chinese American older adults in providing care for their spouses. The findings indicate the necessity of developing culturally meaningful activities to support Chinese American spouse caregivers.
Objective: To explore the relationship between social support and quality of life (QoL) among family caregivers of persons with severe mental illness (SMI) and examine the mediating roles of care burden and loneliness. Methods: A cross-sectional study was carried out between December 2017 and May 2018. A random sample of 256 family caregivers of persons with SMI in rural areas of Sichuan Province, China was recruited for participation. Survey data on socio-demographics, social support, care burden, loneliness, and QoL were collected via in-person interviews. Multiple linear regression analysis and structural equation modeling (SEM) were used to test the hypothesized relationships. Results: The majority (72.7%) of family caregivers of persons with SMI in this study reported having low QoL. Social support was positively associated with QoL and negatively associated with care burden and loneliness. The findings suggested the mediating roles of care burden and loneliness on the association between social support and QoL. Conclusion: The hypothesized model was found to be a suitable model for predicting QoL among family caregivers of persons with SMI. The findings can help inform the design of future interventions aimed at enhancing social support, reducing care burden and loneliness, which may be helpful to improve caregivers' QoL. Future study is required to find a causal path to promote QoL among family caregivers of persons with SMI.
Objectives: This study aimed to evaluate the psychosocial experiences in community-based dementia caregiving by assessing the characteristics of social interactions between family caregivers and community-based service providers and associated psychological responses. Methods: Two independent groups of participants (family caregivers and community-based service providers) completed a one-time survey to report their social interactions and psychological states. A linear regression model was fit for each outcome (satisfaction, 10-item CES-D) while controlling for significant relevant covariates. Results: Higher perceived levels of collaboration were associated with higher job satisfaction and lower depression score among service providers, and higher satisfaction with providers among family caregivers. Higher perceived social support from the provider was associated with higher satisfaction among family caregivers. Conclusions: Participants reported varying levels of provider-family collaboration. The extent of collaborations and support exchange may have implications on the psychological well-being of those providing care to individuals with dementia including families and providers. Clinical implications: It may be beneficial to identify providers and families who perceive low levels of collaboration and implement intervention to facilitate positive social interactions. Developing organizational culture and payment systems that value high-quality social interactions may help enhance the psychological well-being of service providers and satisfaction among families who receive their services.
Aim: The aim of this study is to develop a Smarthealth system of monitoring, modelling, and interactive recommendation solutions (for caregivers) for in‐home dementia patient care that focuses on caregiver–patient relationships. Design: This descriptive study employs a single‐group, non‐randomized trial to examine functionality, effectiveness, feasibility, and acceptability of the novel Smarthealth system. Methods: Thirty persons with Alzheimer's Disease or related dementia and their family caregivers (N = 30 dyads) will receive and install Smarthealth technology in their home. There will be a 1‐month observation phase for collecting baseline mood states and a 2‐month implementation phase when caregivers will receive stress management techniques for each detected, negative mood state. Caregivers will report technique implementation and usefulness, sent via Ecological Momentary Assessment system to the study‐provided smartphone. Caregivers will provide daily, self‐reported mood and health ratings. Instruments measuring caregiver assessment of disruptive behaviours and their effect on caregivers; caregiver depressive symptoms, anxiety and stress; caregiver strain; and family functioning will be completed at baseline and 3 months. The study received funding in 2018 and ethics board approval in 2019. Discussion: This study will develop and test novel in‐home technology to improve family caregiving relationships. Results from this study will help develop and improve the Smarthealth recommendation system and determine its usefulness, feasibility, and acceptability for persons with dementia and their family caregiver.ImpactThe Smarthealth technology discussed will provide in‐home stress reduction resources at a time when older adults may be experiencing increasingly high rates of isolation and anxiety and caregiver dyads may be experiencing high levels of relationship strain. Trial Registration: This study was registered with Clinical Trials.gov (Identifier NCT04536701).
Death, grief and bereavement all look different in the current COVID‐19 pandemic. Patients and families are suffering as a result of COVID‐19 itself, and the measures required to contain it. As a result, health professionals need to be aware of potential for additional psychological distress, as well as the risk of prolonged grief disorder.
Background: The negative mental health impact of coronavirus disease 2019-related stressors may be heightened for those caring for children, who bear responsibity for their welfare during disasters. Aim: Based on the Transactional Model of Stress and Coping, we inquired whether caregivers' emotion regulation and coping behavior were associated with posttraumatic stress symptoms (PTSS). Materials & Methods: Data were collected through a national online survey in April 2020, and again 60 days later. Results: Of the 801 longitudinal cases, 176 (63.6% female; mean age = 33.5) reported caring for minors in their homes during the pandemic. Over 20% of caregivers experienced clinically concerning PTSS, rates higher than their noncaregiving counterparts. Regression analysis indicates caregivers' baseline mental health symptoms and emotion regulation predicted PTSS 60 days later. Discussion: Implications for needed parenting supports among families experiencing traumatic stress are provided. Conclusion: Anxiety symptoms at baseline were the most significant and consistent contributor to all models and were significantly higher among those with clinically concerning levels of PTSS suggesting a clear intervention target.
Background: Healthcare workers have reported a certain segment of geriatric patients that are suffering from abuse/neglect, which in turn has been associated with anxiety, depression, and helplessness in the individual. Family caregivers (blood relations), being the most common perpetrators of elder abuse and neglect (EAN), have also been shown to respond to sensitization if the type of EAN and the interventions are appropriate. Objectives: This study was aimed to comparatively analyze the influence of intervention (psychotherapeutic sensitization of FCG) upon long-term (24 months) treatment maintenance and satisfaction in elderly neglected patients. Methods: One hundred and fifty patients (aged 41–80 years) suffering from elder neglect (EN) (self-confession) and their respective FCGs, fulfilling the study criteria, participated in this longitudinal 2-year study. The patients were randomly dis-tributed (simple random, convenient) in two equal groups (75 each), namely Group (GP) A (control) and GP B (test). A standardized, complete denture treatment was initiated for all the participants. Both the FCGs and the patients of GP B were sensitized (psychotherapeutic education) for EN, while there was no such intervention in GP A. The influence of such intervention was measured for denture maintenance [denture plaque index (DPI) scores] and treatment satisfaction (10-point visual analog scale). Absolute/relative frequencies and means were major calculations during data analysis. Differences between the groups for any treatment compliance parameter was done through the unpaired t-test, while Karl Pearson’s test determined the level of relationship between variables (p-value < 0.05). Results: Decrease in mean DPI scores (suggesting improvement) was seen among patients in GP A from 1 month (m = 2.92) to 24 months (m = 2.77). A negligible increase in DPI scores was observed among patients of GP B from 1 month (m = 1.38) to 24 months (m = 1.44). Differences in mean values between the two groups were statistically significant at 24-month intervals, while the relationship between the variables was nonsignificant. FCG sensitization through psychotherapeutic education shows a long-term positive influence on the treatment compliance (maintenance and satisfaction). Conclusions: Identifying the existence of EAN among geriatric patients, followed by psychothera-peutic education of FCGs is recommended for routine medical and dental long-duration treatment procedures.
Background: Emergency service workers (ESWs) are at increased risk of experiencing mental health symptoms. Little is known about the health impact of providing informal care to ESWs (e.g., their family and friends). Objectives: We aimed to examine the health of Australian ESWs and their informal caregivers compared to the general population, using baseline data from ESWs enrolled in an intervention study. Methods: Outcomes included psychological distress, sleep, quality of life and physical activity. Participants were n = 30 informal carers and n = 34 ESWs. Results: Results highlighted that the health of informal caregivers of ESWs is compromised compared to general Australian population data. Conclusions: Interventions should be expanded to include informal caregivers.
Background: Caregiving in depression imposes a complex health and economic burden. Moreover, there is a paucity of studies examining the impact of caregiving for adult relatives with unipolar depression (CG-UD). This study assessed the burden among CG-UD in five western European (EUR5) countries (France, Germany, Italy, Spain and the United Kingdom) compared with caregivers of adults with other chronic comorbidities (CG-OD) and general non-caregiving (non-CG) population. Methods: A retrospective observational study was conducted using the 2016 National Health and Wellness Survey (NHWS) in EUR5. Differences in humanistic burden (health status and health-related quality of life [HRQoL]) and economic burden (work productivity and activity impairments, health care resource utilization [HRU]) were assessed between CG-UD and CG-OD respondents. Caregiver-specific burden (caregiving responsibilities and caregiver reaction assessment [CRA]) was assessed between caregiver groups. Generalized linear models were used to compare between the groups on the outcomes after adjusting for potential confounders. Results: Of the 77,418 survey respondents examined, 1380 identified as CG-UD, 6470 as CG-OD and 69,334 as non-CG. Compared to CG-OD and non-CG, CG-UD, reported significantly lower health status (e.g., EuroQoL-5 Dimensions-5 Levels [EQ-5D-5L]: CG-UD = 0.63, CG-OD = 0.67, and non-CG = 0.73, p < 0.001) and HRQoL (e.g., mental component score: CG-UD = 35.0, CG-OD = 37.8, and non-CG = 40.7, p < 0.001). Although effect sizes were small (d < 0.2), minimal clinically important differences (MCID) were apparent for HRQoL and health status. Increased economic-related burden was observed for work and activity impairment (e.g., absenteeism: CG-UD = 32.6%, CG-OD = 26.5%, and non-CG = 14.8%, p < 0.001) and HRU (e.g., healthcare provider [HCP; mean, past 6 months]: CG-UD = 10.5, CG-OD = 8.6, and non-CG = 6.8, p < 0.001). Caregiving-specific burden was associated with experiencing a greater lack of family support (CG-UD: 2.9 vs CG-OD: 2.8, p < 0.01), impact on finances (CG-UD: 3.0 vs CG-OD: 2.9, p = 0.036), and on the caregiver’s schedule (CG-UD: 3.1 vs CG-OD: 3.0, p = 0.048). Conclusion: Caregivers of persons with chronic disease experience an excess humanistic and economic burden compared to the general population, with a greater burden confronting caregiver for adults with depression. These findings illustrate the far-reaching burden of depression on both the patient and the relatives who care for them.
Background: Individuals with Multiple Sclerosis (MS) often receive home health care, yet little research investigates the health of informal caregivers of individuals with MS. Methods: We tested a mediation model in which associations between caregiver stress and caregiver self-care were explained by each of four a priori caregiver health factors—caregiver negative affect, pain, tiredness, and functional limitations. Participants (n = 60 informal caregivers) were recruited online or in-person from March—July 2018, and completed an online survey assessing demographics and their caregiving experience. Results: After controlling for demographics, only caregiver tiredness mediated the association between caregiver stress and caregiver self-care. Therefore, caregiver tiredness may be an important construct for assessment, intervention, and future research, among caregivers of individuals with MS, and among anyone providing home health care. Conclusions: These findings have research, clinical, and policy implications.
Background and objective: Health and social care may affect unpaid (family) carers’ health and wellbeing in addition to patients’ lives. It is recommended that such impacts (carer effects) are considered in decision-making. However, the scope of carer effects and range of decisions where carer effects should be considered is uncertain. This study aimed to identify: (i) how different categories of healthcare and social care were perceived to impact on unpaid carers; and (ii) whether there was consensus about when carer effects should be formally considered in decision-making contexts. Methods: A two round, online Delphi study was conducted with 65 UK-based participants (unpaid carers, care professionals, and researchers) with expertise in dementia, mental health, and stroke. Participants considered two broad forms of ‘interventions’ (patient treatment and replacement care) and two broad forms of ‘organisational change’ (staffing and changes in timing/location of care). Participants assessed the likely impacts of these on unpaid carers and whether impacts should be considered in decision-making. Results: Participants predicted interventions and organisational changes would impact on multiple domains of unpaid carers’ lives, with ‘emotional health’ the most likely outcome to be affected. Patient treatment and replacement care services (‘interventions’) were associated with positive impacts across all domains. Conversely, timing/location changes and staffing changes (‘organisational changes’) were perceived to have mixed and negative impacts. There was widespread support (80–81 %) for considering carer effects in research studies, funding decisions, and patient decision-making. Conclusions: This study highlights a perception that carer effects are widespread and important to consider in economic evaluation and decision-making. It highlights the particular need to measure and value effects on carers’ emotional health and the need to use a societal perspective to avoid cost shifting to unpaid carers when introducing interventions and making organisational changes.
Objective: Describe the different forms of emotion work performed by family caregivers of veterans living with a traumatic brain injury (TBI). Design: Collaborators were provided cameras to take photographs illustrating their experiences as family caregivers. The meaning behind caregiver photographs was solicited using photoelicitation interviews and coded. Setting: Homes of veterans or other informal settings in 2 regions of the United States served by the Southeast Louisiana Veterans Health Care System and the Veterans Affairs Portland Health Care System. Participants: Twenty-six family caregivers of post-9/11 era veterans with TBI. Results: Caregivers described performing different types of intangible, and largely invisible, work centered on emotion management. Emotion work primarily involved creating a new normal, keeping things calm, and suppressing their own emotional experiences to "put on a brave face." Although having derived a sense of satisfaction and identity from their role, caregivers acknowledged that emotion work was challenging and sometimes stressful. The Photovoice method allowed care-givers to express through metaphor experiences that otherwise would have been hard to articulate and share with others. Conclusion: Findings signal a need for healthcare systems and providers to acknowledge emotion work as a potential source of stress and to provide multifaceted support for veterans and family caregivers.
Objectives: analyze the level of resilience of family caregivers of children and adolescents hospitalized for cancer treatment and associated factors. Methods: cross-sectional study, carried out in 2018, with 62 family caregivers in a university hospital in the state of Rio Grande do Sul, Brazil. The instruments CDRisc-10-Br, SRQ20, PSS-14 and WHOQOL-Bref were used to measure resilience, minor psychological disorders, stress, and quality of life, respectively. Inferential statistics were used. Results: female caregivers, married, with one child and who practice some predominated religion. They were classified as having a moderate level of resilience (48.4%); with suspicion for minor psychological disorders (45%) and high level of stress (41%). In terms of quality of life, they were satisfied in the Physical, Psychological and Social Relations domains; and dissatisfied in the Environment domain. Conclusions: there were direct weak to moderate correlations between the level of resilience and quality of life and inversely with stress and minor psychological disorders.
Background: Providing care for someone with a disease or chronic condition can have a negative psychological, physical, social, and economic impact upon informal caregivers. Despite the socio-economic relevance and more than three decades of caregiver intervention research only very few translational efforts of successful interventions are reported. Still less of these interventions have been implemented into routine services. Objectives: The aim of the ReDiCare study (German acronym BerTA) is to evaluate the effectiveness of a stepped counselling approach for burdened caregivers delivered by care counsellors of two long-term care insurances and registered psychotherapists. Methods/design: A pragmatic randomised controlled trial with 572 caregivers of older adults (≥ 60 years) receiving benefits of one of the two participating long-term care insurances. Participants are assigned (t0) to either the ReDiCare intervention or a control group receiving routine care and counselling. Data are collected at baseline (-t1), 3-month (t1), 9-month (t2) and 15-month (t3). The 9-month post-intervention assessment (t2) is the primary endpoint to evaluate the results on the primary and secondary outcomes, measured by self-reported questionnaires. Depressive symptoms measured with the CES-D are the primary outcome. The main secondary outcomes are physical complaints, utilization of psychosocial resources, caregiver self-efficacy and burden, positive aspects of caregiving and perceived care quality. A process evaluation, including audio tapes, self-report questionnaires and documentation will be conducted to examine internal and external validity of the intervention. Data on direct and indirect costs are collected for the (health) economic evaluation, using a health care perspective and a societal perspective. Discussion: While comparable previous caregiver interventions have been developed and evaluated for specific caregiver groups (e.g. dementia caregivers, stroke caregivers), the ReDiCare study will indicate whether a stepped approach will be effective also in a broader group of caregivers. The intervention is one of the very few translational studies in caregiver intervention research and will provide valuable insights into relevant factors for training, intervention protocol adherence, effectiveness, and costs for future implementation steps. Trial registration Deutsches Register Klinischer Studien (German Clinical Trials Register), DRKS00014593 (www.drks.de, registered 14 May 2018) and International Clinical Trials Registry Platform, DRKS00014593 (https://apps.who.int/trialsearch/).
Background: An increasing number of qualitative research articles have reported on relatives' experiences of providing care for individuals displaying suicidal behaviour. To contribute more fully to theory and practice, these reported experiences must be synthesized. Objectives: To identify original qualitative studies of relatives' experiences of providing care for individuals with non-fatal suicidal behaviour and to systematically review and synthesize this research using a meta-ethnographic approach. Methods: Systematic review and meta-ethnography. Literature searches were undertaken in six bibliographic databases (PubMed, CINAHL, Embase, PsycINFO, Web of Science and Scopus) and limited to peer-reviewed original studies. Eligible studies reported relatives' experiences of providing care for individuals with suicidal behaviour, published in English or a Scandinavian language. One reviewer screened the titles, abstracts and full texts and then collaborated with another reviewer on excluding ineligible studies. A two-step strategy was used while reviewing publications: 1) appraising study quality, and 2) classifying study findings according to degree of data interpretation. This strategy was used for each study by two independent reviewers who subsequently reached a shared decision on inclusion. Noblit and Hare's methodology for translation and synthesis was followed in developing a novel theoretical interpretation of relatives' experiences. The concept of moral career was adopted in producing this synthesis. Results: Of 7,334 publications screened, 12 studies were eligible for inclusion. The synthesis conveyed relatives' moral career as comprising four stages, each depicting relatives' different perspectives on life and felt identities. First, relatives negotiated conventional ideas about normalcy and positioned themselves as living abnormal family lives in the stage from normal to abnormal. The first career movement could be mediated by social interactions with professionals in the stage feeling helpful or feeling unhelpful. For some relatives, this negotiated perspective of abnormality got stuck in an impasse. They did not interact with their surroundings in ways that would enable them to renegotiate these fixed views, and this stage was named stuck in abnormality. For other relatives, career movement took place as relatives re-positioned themselves as negotiating an alternative perspective of normalcy in the stage from abnormal to normal. Interactions with other people facing similar difficulties enabled relatives to shift perspectives and alleviated experiences of distress.
Background: Parkinson’s disease (PD) is a neurodegenerative disorder, which leads to reduced health-related quality of life (HR-QoL) and autonomy in advanced stages of the disease. Hence, people with PD (PwPD) are in need of help, which is often provided by informal caregivers, especially spouses. This might influence the relationship satisfaction in patients and their spousal caregivers. Additionally, previous studies have shown that a reduced relationship satisfaction may result in mental disorders and reduced physical health. Objectives & Methods: The aim of this study is to identify factors influencing PwPD and their caregivers’ relationship satisfaction in a cross-sectional observational study. Results: Analyses revealed an overall satisfying relationship, measured by the Quality of Marriage Index, in PwPD (n = 84) and their caregivers (n = 79). Relationship satisfaction in PwPD mildly decreased with reduced HR-QoL and more severe depressive symptoms. Reduced relationship satisfaction in caregivers was significantly associated with decreased HR-QoL, higher caregiver burden, more severe depressive symptoms and increased neuropsychiatric symptoms in PwPD. Conclusions: Further studies are needed to investigate the influence of the identified factors over time and if relationship satisfaction has a reciprocal impact on caregiver burden, HR-QoL as well as mental and physical health.
Objective: Family caregivers (FCs) of cancer patients often experience high distress. This randomized clinical trial assessed the feasibility and preliminary effects of an intervention to improve FC supportive care. Method: A pragmatic and minimal intervention to improve FC supportive care was developed and pretested with FCs, oncology team, and family physicians to assess its relevance and acceptability. Then, FCs of lung cancer patients were randomized to the intervention or the control group. The intervention included (1) systematic FC distress screening and problem assessment in the first months after their relative cancer diagnosis, and every 2 months after; (2) privileged contact with an oncology nurse to address FC problems, provide emotional support and skills to play their caregiving role; (3) liaison with the family physician of FCs reporting high distress (distress thermometer score ≥4/10) to involve them in the provision of supportive care. Distress, the primary outcome, was measured every 3 months, for 9 months. Secondary outcomes included quality of life, caregiving preparedness, and perceived burden. At the end of their participation, a purposive sample of FC from the experimental group was individually interviewed to assess the intervention usefulness. Content analysis was performed. Results: A total of 109 FCs participated in the trial. FC distress decreased over time, but this reduction was observed in both groups. Similar results were found for secondary outcomes. However, FCs who received the intervention felt better prepared in caregiving than controls (p = 0.05). All 10 interviewed FCs valued the intervention, even though they clearly underused it. Knowing they could contact the oncology nurse served as a security net. Significance of results: Although the intervention was not found effective, some of its aspects were positively perceived by FCs. As many of them experience high distress, an improved intervention should be developed to better support them.
Objective: Informal family caregivers provide critical support for patients receiving chimeric antigen receptor (CAR) T‐cell therapy. However, caregivers' experiences are largely unstudied. This study examined quality of life (QOL; physical functioning, pain, fatigue, anxiety, and depression), caregiving burden, and treatment‐related distress in caregivers in the first 6 months after CAR T‐cell therapy, when caregivers were expected to be most involved in providing care. Relationships between patients' clinical course and caregiver outcomes were also explored. Methods: Caregivers completed measures examining QOL and burden before patients' CAR T‐cell therapy and at days 90 and 180. Treatment‐related distress was assessed at days 90 and 180. Patients' clinical variables were extracted from medical charts. Change in outcomes was assessed using means and 99% confidence intervals. Association of change in outcomes with patient clinical variables was assessed with backward elimination analysis. Results: A total of 99 caregivers (mean age 59, 73% female) provided data. Regarding QOL, pain was significantly higher than population norms at baseline but improved by day 180 (p < .01). Conversely, anxiety worsened over time (p < .01). Caregiver burden and treatment‐related distress did not change over time. Worsening caregiver depression by day 180 was associated with lower patient baseline performance status (p < .01). Worse caregiver treatment‐related distress at day 180 was associated with lower performance status, intensive care unit admission, and lack of disease response at day 90 (ps < 0.01). Conclusions: Some CAR T‐cell therapy caregivers experience pain, anxiety, and burden, which may be associated patients' health status. Further research is warranted regarding the experience of CAR T‐cell therapy caregivers.
Background: Vietnam has experienced a rapid increase in cancer incidence with many cancers (70%) being diagnosed at a late stage. The majority of physical and psychosocial care is provided by caregivers with minimal professional input. Due to limited resources in hospitals and social and cultural norms regarding caregiving in Vietnam, caregivers provide a range of supportive functions for family members diagnosed with cancer. Objectives: This study sought to provide empirical evidence on the self-identified unmet needs of caregivers of inpatients in national oncology hospitals in Vietnam. Methods: Focus groups and in-depth interviews were conducted with caregivers (n = 20) and health care providers (n = 22) in national oncology hospitals in Hanoi and Ho Chi Minh City. Data was collaboratively analysed using thematic analysis. Findings were validated through key stakeholder group discussions with both caregivers and healthcare providers across multiple regions in Vietnam. Results: Analysis demonstrated that the burden of informal care is high with many caregivers managing patient’s severe and complex health needs with minimal support. Caregivers highlighted four main areas of critical need: (i) challenges in providing long term care, particularly in hospital and in-patient settings, such as accessing comfortable facilities, accommodation and finance; (ii) information needs about cancer, treatment, and nutrition; (iii) support for the emotional impact of cancer; and (iv) training about how to provide care to their family members during treatment and recovery phases. Conclusions: Caregivers provide invaluable support in supporting people with a cancer diagnosis, particularly given wider systemic challenges in delivering cancer services in Vietnam. Increasing visibility and formal support is likely to have both a positive impact upon the health and wellbeing of caregivers, as well as for cancer patients under their care. Given its absence, it is critical that comprehensive psychosocial care is developed for caregivers in Vietnam.
Background: In many communities around the world, informal caregivers of older adults with dementia represent an essential, yet often underappreciated, source of long-term care. The present study aimed to determine the personal experiences of such caregivers, which could be instrumental for developing means of improving the quality of care for both care receivers and their informal caregivers. Methods: Five semi-structured focus-group discussions were held. The participants (n = 31) were all informal caregivers of older adults with dementia. The focus-group discussions were audio-recorded and transcribed verbatim. An inductive approach was used, and thematic data analysis was applied. Results: Four thematic categories were identified: learning caregiving through personal experience; implications of caregiving on social wellbeing; caregivers’ contradictory emotions regarding care delivery; and addressing challenges regarding care provision. Conclusions: This study revealed, among the informal caregivers, a variety of experiences, contradicting feelings, and problem-solving strategies relating to the care of older adults with mental disorders. Becoming an effective caregiver involves professional and psychological development. Developing caregiving skills, supportive environment and positive attitude can help facilitate providing care. Caregiving largely impacts the emotional, physical, and social wellbeing of the person; thus, comprehensive approaches are needed to prevent burnout and associated social disadvantages.
Background: Primary hemophagocytic lymphohistiocytosis (pHLH) is a rare and life-threatening disorder, which usually occurs during infancy or early childhood and is characterized by abnormal activation of the immune system. However, the burden of pHLH on children and their families has not been previously evaluated. Methods: This qualitative study investigated the impact of pHLH and its treatment on the physical, emotional, and social well-being of patients and caregivers in the USA and UK using interviews to provide a comprehensive insight from the perspective of the caregivers and young survivors. Results: Twenty-one caregivers were enrolled (median [range] age, 41.1 [26-58] years) and represented 20 patients, four from the UK and 16 from the USA. At enrollment, 17 of the 20 patients were alive with a median [range] age of 12.75 [5-31] years at a mean [range] of 7.8 [0.6-11.6] years after diagnosis. In addition, four adult survivors (median [range] age, 23.3 [21-30] years) were also enrolled (total participants n = 25). From noticing initial symptoms to receiving a diagnosis, caregivers reported a mean (range) of 25.9 (0-258) months. pHLH and its treatment had a substantial and long-lasting impact on patients and caregivers, affecting their physical, emotional and social well-being, family relationships, friendships, and ability to work and study. Many of the experiences reported were negative, even after curative treatment, and some participants experienced long-lasting physical and emotional issues. The most noticeable impact of pHLH for patients was on their physical well-being, whereas for caregivers it was emotional well-being. Across all participants there was a sense of isolation due to the illness and its treatment, particularly regarding the patient being immunocompromised and the fear of infection. Areas having a major impact and considered in need of improvement included: delays in diagnosis, lack of patient-specific information on pHLH and a lack of support and understanding about the condition. Conclusions: pHLH placed a substantial burden on patients and caregivers, which for some were long-lasting. This was compounded by the lack of awareness and understanding of pHLH by healthcare professionals, and a lack of accessible information for those affected by pHLH.
Background: Informal caregivers, often family and friends, experience significant psychological and physical distress leading to reductions in health and quality of life (QOL). Mind-body interventions focused on caregivers are often limited and do not address multiple barriers, including caregivers’ economic, geographic, and time constraints. Translation of in-person, community-based interventions to Internet-based delivery may offer greater accessibility for caregivers, leading to increased adherence. Methods: Caring for Caregivers with Mind-Body implements a three-arm, pilot, randomized controlled trial to evaluate the feasibility of delivering a Qigong intervention (Eight Brocades) to cancer caregivers. A total of 54 cancer caregivers will be randomized into one of three 12-week programs: (1) community-based Qigong, (2) Internet-based Qigong, or (3) a self-care control group. Study-specific aims include (1) modify intervention content for online delivery, (2) evaluate the feasibility of recruiting and retaining cancer caregivers into a 12-week clinical trial, and (3) evaluate the feasibility of collecting and managing data, and the suitability of questionnaires for this population. Several outcomes will be assessed, including caregiver QOL, caregiver burden, caregiver distress, perceived social support, physical function, and cognitive function. A 6-month follow-up will also assess longer-term changes in QOL and psychosocial well-being. Discussion: Findings will be used to inform the design and conduct of a large-scale comparative effectiveness trial evaluating caregivers who received Qigong training delivered through community-based vs Internet-based programs. A finding that either or both programs are effective would inform care and options for caregivers. Trial registration NCT04019301; registered on July 15, 2019; clinicaltrials.gov
Introduction: Depressive symptoms, negative life changes, poor self-care, and higher caregiver burden are common in caregivers who assist individuals with heart failure (HF) in managing daily activities and disease-related symptoms. Previous research findings suggest social support, problem solving, and family function may influence these outcomes. However, the influence of these factors on outcomes in rural HF caregivers is unknown. The purpose of this study is twofold: (1) to examine whether social support, problem solving, and family function predicted depressive symptoms, caregiving-related life changes, self-care, and caregiver burden in rural HF caregivers; and (2) to compare differences in these variables between rural and urban caregivers. Methods: Rural caregivers (n=114) completed an online researcher-developed sociodemographic and clinical survey and standardized (Likert-type) self-report instruments. Participants were recruited locally from south-eastern USA (using face-to-face and telephone contacts, posted flyers, newspaper advertisements, and social media), nationally (newspaper advertisements and social media sites) and internationally (using social media). Potential participants were directed to the study website to complete the online surveys. These methods recruited participants who lived in 24 states within the USA, as well as from Canada, England, Ireland, Scotland, and Wales. Demographic statistics and Mann--Whitney U-test, as well as bivariate correlations, multivariate linear modelling, and Roy's largest root, were used to analyse data, controlling for covariates. Results: Rural (n=114) caregivers were primarily Caucasian (84.2%), women (58.8%), and 41.45 (±9.013) years old. Social support had significant effects on depressive symptoms (ηp² =0.384, p<0.001), self-care (ηp² =0.108, p=0.001), and life changes (ηp² =0.055, p=0.016), while problem solving showed significant effects on depressive symptoms (ηp² = 0.078, p=0.004) and caregiver burden (ηp² =0.23, p<0.001). Family function had significant effects on life changes (ηp² =0.104, p=0.001), self-care (ηp² =0.088, p=0.002), and caregiver burden (ηp² =0.116, p<0.001). Compared to urban (n=412) participants, rural caregivers experienced significantly less social support (p=0.001), worse problem-solving skills (p=0.003) and family functioning (p=0.009), and greater depressive symptoms (p≤0.01) and subjective burden (p=0.001). There were no significant differences in caregiver self-care (p=0.416) and perceived life changes (p=0.346) among rural and urban caregivers. Conclusion: Both social support and problem solving have significant effects on depressive symptoms in rural HF caregivers, while social support and family function influences self-care. Problem solving and family function also affect caregiver burden, while social support and family functioning influences caregiver life changes. Rural caregivers are often separated by long distances, and have transportation issues and limited access to healthcare providers and support services; therefore, innovative strategies are needed to explore the usefulness of these variables in improving caregiver outcomes.
Background: Informal caregivers of persons living with dementia have an increased risk of adverse mental health effects. It is therefore important to systematically summarize published literature in order to find out which mental health interventions generate effective support for informal caregivers of persons living with dementia. Objectives: The objective of this study is to conduct a systematic review of intervention content, effectiveness and subgroup differentiation of mental health interventions for informal caregivers of persons with dementia living at home. Method: We searched four electronic databases (PubMed, PsychINFO, Scopus and CINAHL) and included only methodically high-quality randomized controlled trials (RCTs), published in English or German language between 2009 and 2018. The intervention programmes focused on mental health of family caregivers. A narrative synthesis of the included studies is given. Results: Forty-eight publications relating to 46 intervention programmes met the inclusion criteria. Burden, depression and quality of life (QoL) are the predominant parameters that were investigated. Twenty-five of forty-six interventions (54.3%) show positive effects on at least one of the outcomes examined. Most often, positive effects are reported for the outcome subjective burden (46.2%). Only six studies explicitly target on a certain subgroup of informal dementia caregivers (13%), whereas all other interventions (87%) target the group as a whole without differentiation. Conclusion: The most beneficial results were found for cognitive behavioural approaches, especially concerning the reduction of depressive symptoms. Besides this, leisure and physical activity interventions show some good results in reducing subjective caregiver burden. In order to improve effectiveness, research and practice may focus on developing more targeted interventions for special dementia informal caregiver subgroups.
Background: Italy was the first European country to fight the Covid-19 outbreak. To limit the transmission of the virus, the Italian Government imposed strict domestic quarantine policies and temporary closure of non-essential businesses and schools from March 10th,2020. Although more and more literature is exploring the impact of the pandemic on non-referred children and families, only a few studies are focused on the psychosocial impact of Covid-19 in chronically ill children and their caregivers. Methods: The present study investigates asthma control and children and mothers’ psychological functioning (i.e.: psychological well-being, fear of contagion, and mothers’ Covid-19 related fears) in 45 asthmatic children aged 7-to-14, compared to a control sample. The subjects were administered an online survey after the lockdown (from 28th May to 23rd August 2020). Results: The analysis shows that asthmatic children presented higher concern in relation to contagion, however, no difference in psychological functioning was displayed between the two cohorts. Mothers reported more Covid-19 related fears, and greater worries according to the resumption of their children’s activities. Moreover, they indicated a global worsening of their psychological well-being during the lockdown. Furthermore, regarding the clinical sample, the multivariate regression model showed that a worsening of mothers' psychological and children’s physical well-being was associated with a worsening of children’s psychological well-being during the lockdown. Conclusions: The results of this study indicate that mothers of asthmatic children can be more prone to experience psychological fatigue in a pandemic scenario. Special programs should be developed to support caregivers of chronically ill children.
Background: Psychosocial adjustment to a complex and disabling long‐term condition like Parkinson´s disease is a complex, dynamic, cyclical and interactive process. Family caregivers, face multiple challenges that require a significant effort in terms of psychosocial adjustment, which must be considered by healthcare professionals in order to provide a holistic care. The patients’ self‐report version of the Psychosocial Adjustment to Illness Scale (PAIS‐SR), which has been validated in Spain for use in Parkinson's disease, is designed to evaluate the psychosocial adjustment of patients. Objectives: Our purpose was to validate the Spanish PAIS‐SR version for caregivers of patients with Parkinson's disease. Methods: An open, national cross‐sectional study with one point‐in‐time evaluation and retest was carried out in 450 family caregivers of patients with Parkinson's disease. Data were collected in Spain from April 2016 to September 2017. Results: The psychometric analysis performed showed that the Spanish version of the PAIS‐SR for caregivers presents adequate indicators of reliability, internal and external validity, and is structured according to the seven‐domain model proposed by the author of the instrument.
Background: The mini-suffering state examination is a valid and reliable measure that have been used to assess suffering in patients with advanced cancer. The aim of this study was to carry out a psychometric analysis of the Spanish version of the mini-suffering state examination. Method: A validation study was conducted. Seventy-two informal caregivers of deceased patients in palliative care were included in this study. A psychometric testing of content validity, internal consistency, and convergent validity with the Spanish version of the quality of dying and death questionnaire was performed. Results: The original instrument was modified to be used by informal caregivers. The content validity was acceptable (0.96), and the internal consistency was moderate (α = 0.67). Convergent validity was demonstrated (r = −0.64). Conclusion: The Spanish modified version of the MSSE showed satisfactory measurement properties. The Spanish modified version of MSSE can be useful to facilitate screening, monitor progress, and guide treatment decisions in end-of-life cancer patients.
Background: The Multidimensional Scale of Perceived Social Support (MSPSS) is one of the most widely used scales for social support. Although previous studies have shown good reliability and concurrent validity, conflicting evidence exists on its factor structures. Aim: To validate the MSPSS among caregivers of people with schizophrenia in China and assess its factor structure. Methods: A cross-sectional study was conducted of 449 family caregivers in 12 communities for psychometric testing, eg, internal consistency reliability, test–retest reliability, construct validity, exploratory factor analysis (EFA) and confirmatory factor analysis (CFA). Results: The MSPSS showed good internal consistency with a Cronbach’s alpha of 0.95, good test–retest reliability with intraclass correlation coefficient (ICC) of 0.91, and kappa ranging from 0.62 to 0.71. Concurrent validity was supported by its negative correlations with perceived stress, and significant positive correlations with caregiving rewarding feelings, family functioning, and coping. EFA yielded a two-factor structure (family vs non-family), while CFA generally supported a three-factor structure (family, friends, and significant others). Conclusion: Our findings show good psychometric properties of the MSPSS among caregivers of people with schizophrenia in China. EFA yields two-factor structure and CFA yields three factors consistent with the theory underlying the measure’s development.
Background: Caregivers are major contributor to the self-care of patients with heart failure. The Caregiver Contribution to Self-Care of Heart Failure Index (CC-SCHFI) measures these contributions across three scales: self-care maintenance (symptom monitoring and treatment adherence); self-care management (dealing with symptoms); and confidence in contributing to the self-care (self-efficacy in managing self-care) of patients with heart failure. Informal caregivers play a vital role in supporting family members with heart failure in Thailand, yet no validated tool exists to measure their contribution. We examined the psychometric properties of the CC-SCHFI in a Thai population. Methods: The CC-SCHFI was translated into Thai using a standard forward and backward translation procedure. A cross-sectional design was used to examine the psychometric properties of the Thai version of the CC-SCHFI in 100 family caregivers of heart failure patients in Southern Thailand. Confirmatory factor analysis was used to assess construct validity, and factor score determinacy coefficients were computed to evaluate internal consistency reliability. Results: The Thai version of the CC-SCHFI demonstrated acceptable internal consistency (composite reliability of each scale ranged from 0.76 to 0.99). Reliability estimates were adequate for each scale (McDonald’s omega ranged from 0.75 to 0.96). Confirmatory factor analysis supported the original factor structure of the instrument, with good fit indices for all three scales (comparative fit index = 0.98–1.00; root-mean-square error of approximation = 0.00–0.07). Conclusions: The Thai version of the CC-SCHFI appears to be a valid and reliable instrument for measuring caregiver contributions to self-care maintenance and self-care management as well as contributing to caregiver confidence in the self-care of Thai heart failure patients.
Background: During the COVID-19 pandemic, healthcare providers and informal caregivers were at an increased risk of adverse mental health effects. This systematic review provides a summary of the available evidence on the content and efficacy of the psychological support interventions in increasing mental health among healthcare providers and informal caregivers during the COVID-19 pandemic. Methods: PubMed, Google Scholar, PsychINFO, and Scopus databases were systematically searched for relevant articles, and the methodological quality of selected articles was assessed using the Quality Assessment Tool for Quantitative Studies. Results: A search of electronic databases identified five reports based on inclusion and exclusion criteria. All psychological support interventions for caregivers were delivered digitally. Despite the large heterogeneity of the selected studies, the findings support the efficacy of mental health interventions in reducing distress and burnout, while promoting self-efficacy and well-being in both healthcare providers and informal caregivers. Conclusion: Since mental health problems are expected to increase during, and as a result of, the COVID-19 pandemic, and digital tools might offer a range of mental health treatments to meet the unique and immediate needs of people, further research is needed to test the cost-effectiveness of digital psychological interventions.
Background: When COVID-19 was declared as a pandemic, many countries imposed severe lockdowns that changed families' routines and negatively impacted on parents' and children's mental health. Several studies on families with children with autism spectrum disorder (ASD) revealed that lockdown increased the difficulties faced by individuals with ASD, as well as parental distress. No studies have analyzed the interplay between parental distress, children's emotional responses, and adaptive behaviors in children with ASD considering the period of the mandatory lockdown. Furthermore, we compared families with children on the spectrum and families with typically developing (TD) children in terms of their distress, children's emotional responses, and behavioral adaptation. Methods: In this study, 120 parents of children aged 5–10 years (53 with ASD) participated. Results: In the four tested models, children's positive and negative emotional responses mediated the impact of parental distress on children's playing activities. In the ASD group, parents reported that their children expressed more positive emotions, but fewer playing activities, than TD children. Families with children on the spectrum reported greater behavioral problems during the lockdown and more parental distress. Conclusions: Our findings inform the interventions designed for parents to reduce distress and to develop coping strategies to better manage the caregiver–child relationship.
Background: Latinas with breast cancer draw on a diverse range of family members for informal care. Latin cultures typically prescribe high levels of support and care for an ill family member that leave caregivers vulnerable to compromised well-being. Method: In this cross-sectional survey study, 258 family caregivers of Latinas with breast cancer completed reports of psychological distress, availability of social support, and acculturation. Results: Mothers who provide care to a daughter with breast cancer experience higher levels of psychological distress and report lower availability of informational support than most other types of family caregivers. Mothers' lower levels of acculturation may at least partially explain these reductions in well-being. Discussion: This study highlights the diverse range of family and fictive kin who participate in family caregiving for Latina breast cancer survivors. Spousal caregivers may not represent a unique population, whereas mothers as caregivers are indeed distinct for their higher distress levels.
Background: The wellbeing of family caregivers of mentally ill persons has often been ignored, despite that family caregivers can be predisposed to psychiatric morbidities and burden in caring for their mentally ill family members. This study examined the levels of psychological distress and burden of care experienced by family caregivers who care for their mentally ill relatives in Edo State, Nigeria. Methods: This study assessed psychological distress using the General Health Questionnaire (GHQ-12). Burden of care was measured using the 22-item Zarit Burden Interview (ZBI) questionnaire. Multiple linear regression was done to determine factors associated with burden of care and psychological distress, while factor analysis was used to determine the underlying forms of burden of care and psychological distress among participants. Results: Caregivers studied were relatives of patients diagnosed for depression (25.1%), substance use disorder (22.2%), schizophrenia (20.2%) and bipolar affective disorder (11.1%). Approximately 15% experienced no-to-mild burden, 51.3% mild-to-moderate burden and 34.0% high-or-severe burden. Nearly halve (49.0%) of participants experienced psychological distress. Severe rate of psychological distress was observed among subjects caring for patients with schizophrenia (60.7%), epilepsy (60.0%), substance use disorder (52.2%) and depression (49.0%). High burden of care was more preponderant among caregivers of relatives with mental retardation and epilepsy (50% each) and schizophrenia (39.3%). Having a higher educational qualification and being self-employed was a predictor of psychological distress. Gender of caregiver and the diagnosis schizophrenia among relatives of caregivers predisposed to burden of care. Three factors including social and emotional dysfunction, psychological distress and cognitive dysfunction were identified as components of psychological health through factor analysis. On the burden scale, six factor components were identified as: personal strain, role strain, intolerance, patients’ dependence, guilt and interference in personal life. Conclusion: There is a high prevalence of psychological morbidity and burden of care among family caregivers providing care for persons with mental illness.
Background: The Coronavirus Disease 2019 (COVID-19) is a global pandemic and posed serious challenges in many countries. A number of studies before the COVID-19 pandemic have shown that the primary caregivers of the ED patients are subjected to great burden, psychological pressure, and serious emotional problems. This study aimed to investigate the psychological distress level of the primary caregivers of ED offspring during the COVID-19 pandemic. Methods: From March 6 to April 20, 2020, 378 questionnaires for primary caregivers of ED offspring and 1163 questionnaires for primary caregivers of healthy offspring were collected through an online crowdsourcing platform in mainland China. Valid questionnaires that met the criteria included 343 (90.74%) primary caregivers of ED offspring and 1085 (93.29%) primary caregivers of healthy offspring. Using Propensity Score Matching (PSM), 315 (83.33%) primary caregivers of ED offspring and 315 matched primary caregivers of healthy offspring were included in the statistical analysis. Depression, anxiety, perceived stress and social support were measured by Patient Health Questionnaire-9, Generalized Anxiety Disorder-7, Perceived Stress Scale-10 and Social Support Rating Scale, respectively. Results: The rates of depression and anxiety of the primary caregivers of ED offspring were 20.6 and 16.5%, which were significantly higher than those of primary caregivers of healthy offspring (4.1 and 2.2%), all P < 0.001. Regression analysis found that perceived stress, social support, previous or present mental illness, family conflicts during the COVID-19 pandemic had a significant impact on the severity of depression (P < 0.001, P = 0.002, P = 0.041, P = 0.014); Perceived stress, social support, family conflicts during the COVID-19 pandemic and years of education had a significant impact on the severity of anxiety (P < 0.001, P = 0.002, P = 0.002, P = 0.003). Conclusions: During the COVID-19 pandemic, primary caregivers of ED offspring experienced more psychological distress than that of primary caregivers of healthy offspring. ED caregivers with high perceived stress may have higher levels of depression and anxiety. ED caregivers with high social support, no mental illness and no family conflicts may have lower levels of depression. ED caregivers with high social support, no family conflicts, and high years of education may have lower levels of anxiety.
Objective: To assess the presence of psychiatric morbidity and associated socio-demographic factors among informal caregivers of children suffering from intellectual developmental disorders. Method: The analytical cross-sectional study was conducted at the Neurology Department of a tertiary care hospital in Rawalpindi, Pakistan, from January 1, 2018, to December 31, 2019, and comprised informal caregiver of children diagnosed with intellectual developmental disorders presenting at the paediatric or neurology outpatient clinics of the hospital. Intellectual developmental disorder was diagnosed by consultant neurologists or psychiatrists or paediatricians on the basis of International Classification of Diseases-11 criteria. Psychiatric morbidity in the informal caregiver was assessed using the 12-item general health questionnaire. Data was analysed using SPSS 23, and binary logistic regression was applied to assess association. Results: Of the 500 informal caregivers, 323(64.6%) showed psychiatric morbidity. Increasing age and comorbid epilepsy among the patients were significantly related to the presence of psychiatric morbidity among the informal caregivers (p<0.05). Conclusion: Majority of informal caregivers of children with learning difficulties were found to have psychiatric morbidity.
Background: Older people with long-term mental health conditions who receive care in their own home are vulnerable to the inappropriate use of medications and polypharmacy given their underlying health conditions and comorbidities. Inappropriate use of pro re nata (PRN) medications in these older people can enhance their suffering and have negative consequences for their quality of life and well-being, leading to readmission to healthcare settings and the increased cost of health care. Methods: This narrative review on published international literature aims at improving our understanding of medicines management in home care and how to improve PRN medication use among older people with long-term health conditions in their own home. Results: Accordingly, the improvement of PRN medicines management for these older people requires the development of an individualised care plan considering ‘reduction of older people’s dependence on PRN medications’, ‘empowerment of family caregivers’, and ‘support by healthcare professionals.’ PRN medication use should be reduced through deprescription and discontinuation strategies. Also, older people and their family caregivers should be encouraged to prioritize the use of non-pharmacologic methods to relieve physical and psychological problems. Conclusions: Besides the empowerment of family caregivers through role development, education and training about PRN medications, and involvement in decision-making, they need support by the multidisciplinary network in terms of supervision, monitoring, and home visits.
Objective: After diagnosis, caregivers of children with cancer, particularly mothers or primary caregivers (PCs), often show elevated depressive symptoms which may negatively impact family functioning. We tested PC and secondary caregiver (SC) depressive symptoms as predictors of family, co‐parenting, and marital functioning and whether having a non‐depressed SC buffers against potential negative effects of PC depressive symptoms. Methods: Families (N = 137) were recruited from two major children's hospitals following a diagnosis of pediatric cancer. Caregivers completed self‐report measures of depressive symptoms (Center for Epidemiological Studies‐Depression Scale; Depression, Anxiety, and Stress Scale) and marital functioning (Dyadic Adjustment Scale) at 1‐month post‐diagnosis. A subset of families (n = 75) completed videotaped interaction tasks at approximately 3‐months post‐diagnosis that were coded for family and co‐parenting interactions. Results: Higher PC depressive symptoms at 1‐month post‐diagnosis was associated with higher adaptability and lower conflict in family functioning. PC depressive symptoms were also associated lower dyadic consensus and lower dyadic satisfaction. SC depressive symptoms were not significantly associated with any family/co‐parenting/marital functioning variables. Significant interaction analyses suggested that SC depressive symptoms moderated the effect of PC depressive symptoms on family cohesion, withdrawn parenting, and affective expression in the marriage, such that the relationship between PC depressive symptoms and poorer functioning was attenuated when SC depressive symptoms were at low or average levels. Conclusions: Having a nondepressed SC buffered against negative effects of PC depressive symptoms on certain domains of family, coparenting, and marital functioning. SCs may play a protective role for families of children with cancer.
Introduction: The prevalence of mental disorders plays an important role in identifying the state of mental health of the community and estimate the required facilities at any time. Objectives: Therefore, the purpose of this study was to investigate the prevalence of psychological disorders in caregivers of children with intellectual disabilities and motor disabilities in Shiraz. Methods: The research was descriptive and cross-sectional survey. The statistical population consisted of all mothers of children with disabilities who were admitted to welfare centers and clinics of Shiraz in 2019. Of these families, 35 mothers with children with intellectual disability and 35 mothers with children with motor disability were selected as the sample group. SCL-90-R (1976) was used to collect of data. For analyze the data, MANOVA test was used. Results: The results of this study showed that the most common psychological disorders in caregivers of children with intellectual disability were aggression (hostility), hypersensitivity to interpersonal relationships, anxiety and depression, and in caregivers of children with motor disabilities were physical complaints, sensitivity to interpersonal relationships, paranoid thoughts and anxiety. Conclusions: According to the findings of this research, it can be concluded that caregivers of children with special needs in terms of mental health are not in a favorable situation, which is due to the lack of proper adaptation with the disability of their child and the failure to meet their needs.
Background: People affected by mental illness often come from families with patterns of mental illness that span across generations. Hence, child and adolescent mental health services (CAMHS) likely provide treatment to many children with parents who also experience mental illness. Objectives and Methods: The aim of this scoping review was to: (1) identify the prevalence of mental illness among parents of children in CAMHS; (2) identify and appraise the methodologies that have been implemented to assess the prevalence of parental mental illness in CAMHS; (3) identify additional circumstances associated with families where both parent and child experience mental illness; and (4) present recommendations that have been made for CAMHS practice based on these findings. English language, peer-reviewed studies (2010–2018) that had investigated the mental health of parents in CAMHS were included in the review. Findings: Literature searching yielded 18 studies which were found to have utilised diverse methodologies to assess parental mental health. Overall, reported prevalence of parental mental illness ranged from 16 to 79%; however, a single study that was deemed to be comprehensive reported prevalence rates of 36% for mothers and 33% for fathers. Across studies, parent and child mental illness was found to be associated with additional adversities impacting family functioning and wellbeing. Conclusions: For children who receive treatment for mental illness, having a parent who also experiences mental illness is a frequent family circumstance that has implications for their prospects for recovery. Accordingly, the mental health of parents should be an important consideration within the mental health care CAMHS provide to children.
Background: The care of people with dementia is usually carried out by their family members, which can cause objective und subjective burden and raise their risk of depressiveness. Thus, the aim of this study is to identify predictors of the change in depressiveness of informal caregivers over 1 year in order to be able to derive hypotheses for interventions that promise success. Methods: The Bavarian Dementia Survey (BayDem) is a multi-center, longitudinal study conducted at three different sites in Bavaria, Germany. Participants were people with dementia and their informal caregivers. Data was collected at baseline and after 12 months by standardized face-to-face interviews in cooperation with local players. The informal caregivers’ depressiveness was assessed with the WHO-5. Data was also collected on the people with dementia’s cognition (MMSE), behavioral symptoms (NPI) and comorbidities (Charlson Comorbidity Index) as well as caregivers’ social inclusion (LSNS), time spent on care and care contribution (RUD). For statistical analysis, a multiple regression model was used. Results: The data of 166 people with dementia and their informal caregivers was analyzed. Of the latter, 46% were categorized as “likely depressed”. The change in depressiveness over a year was significantly predicted by baseline depressiveness as well as an increase in the time informal caregivers spent supervising the person with dementia. Conclusions: Informal caregivers of people with dementia are at high risk of depression. The time spent supervising the person with dementia has a significant impact on increasing depressiveness. This highlights the importance of support services to provide the informal caregiver with relief and possibly reduce depressiveness.
Objective: Depressive symptoms are common mental health problems among the family caregivers of patients with dementia. However, little is known about the prevalence of depressive symptoms among the family caregivers of patients with dementia in Indonesia. This study aimed to examine: 1) the factors predicting depressive symptoms, 2) the mediating role of social support in the relationship between burden and depressive symptoms, and 3) the association between depressive symptoms and healthcare utilization among family caregivers. Methods: This was a cross-sectional study involving 250 family caregivers of patients with dementia recruited from four hospitals in Java, Indonesia. Data were collected by Zarit Burden Interview (ZBI); the Neuropsychiatric Inventory Questionnaire (NPI-Q), the Mastery scale, the Multidimensional Scale of Perceived Social Support, and the Center for Epidemiologic Studies Depression (CES-D) Scale. Descriptive statistics, chi-square test, hierarchical multiple linear regression, and Baron and Kenny’s regression method were used to analyze the data. Results: The results revealed that about a quarter of the participants (24.8%) experienced depressive symptoms. Caregiver burden, mastery, behavioral and psychological symptoms of dementia, and social support explained 45.5% of the variance in the prevalence of depressive symptoms among family caregivers (R2=0.455). Social support also partially mediated the association between caregiver burden and depressive symptoms. There was no association between depressive symptoms and the use of healthcare services among the family caregivers. Conclusion: The findings revealed that social support is a mediating factor affecting the relationship between caregiver burden and depressive symptoms. Interventions targeting social support to help alleviate caregiver burden would be effective in helping reduce depressive symptoms in the family caregivers of patients with dementia.
Background: Parents of children with autism spectrum disorder (ASD) face higher levels of caregiver strain compared to parents of children with other disabilities. This study examined child clinical features that predict high levels of caregiver strain for 374 parents of children with ASD. Methods: Caregiver strain was measured using the Caregiver Strain Questionnaire (CGSQ) objective, subjective internalized, and subjective externalized subscales. Results: Confirmatory factor analysis indicated an acceptable fit for the original CGSQ three-factor solution. The strongest child predictors across CGSQ subscales were: disruptive behavior for objective strain, autism severity and disruptive behavior for subjective internalized strain, and oppositional behavior and hyperactivity for subjective externalized strain. Conclusions: Individualized interventions that attend to specific elements of parental strain may reduce strain and improve family wellbeing.
Background: The current study examined the association of patient factors, patient/caregiver relationships, and living arrangements with caregiver burden due to delirium. Methods: The sample included a subset (N = 207) of hospitalized medical and surgical patients (aged >70 years) enrolled in the Better Assessment of Illness Study and their care-givers. Results: The majority of caregivers were female (57%) and married (43%), and 47% reported living with the patient. Delirium occurred in 22% of the sample, and delirium severity, pre-existing cognitive impairment, and impairment of any activities of daily living (ADL) were associated with higher caregiver burden. However, only the ADL impairment of needing assistance with transfers was independently significantly associated with higher burden (p < 0.01). Child, child-in-law, and other relatives living with or apart from the patient reported significantly higher caregiver burden compared to spouse/partners (p < 0.01), indicating caregiver relationship and living arrangement are associated with burden. Conclusions: Future studies should examine additional factors contributing to delirium burden.
Purpose: To examine a predictive theoretical model of psychological distress based on the following variables reflected on family caregivers of patients with cancer: the unmet supportive care needs, subjective caregiving burden, social support, and the positive aspects of caregiving. Methods: A cross-sectional descriptive study was conducted on a sample of 484 dyads of patients and their family caregivers. The caregivers completed structured questionnaires designed to measure psychological distress, unmet supportive care needs, subjective caregiving burden, positive aspects of caregiving, and social support. Patients' demographic variables and medical data were collected from a medical record review. We used a structural equation modeling to test the predictive theoretical model. Results: Path analysis results partially supported the proposed model with satisfactory fit indices. Specifically, family caregivers with an increasing number of unmet needs or a heavier caregiving burden were more likely to have more severe psychological distress. Bootstrapping results supported that the caregiving burden and social support were significant mediators. Greater unmet supportive care needs predicted higher psychological distress through increasing caregiving burden. Stronger social support predicted lower psychological distress through decreasing caregiving burden. Positive aspects of caregiving predicted lower caregiving burden through the increasing perceived social support, which in turn eliminated psychological distress. Conclusions: Unmet supportive care needs could cause psychological distress through increasing caregiving burden. The positive aspects of caregiving reduced caregiving burden through increasing social support, which subsequently alleviated psychological distress. Interventions that aim to satisfy supportive care needs, to reduce caregiving burden, and to strengthen social support ties may boost the mental health of family caregivers.
Background: Amyotrophic Lateral Sclerosis (ALS) is a rare neurodegenerative, fatal and currently incurable disease. People with ALS need support from informal caregivers due to the motor and cognitive decline caused by the disease. Objectives: This study aims to identify caregivers whose quality of life (QoL) may be impacted as a result of caring for a person with ALS. Methods: In this study, we worked towards the identification of the predictors of a caregiver’s QoL in addition to the development of a model for clinical use to alert clinicians when a caregiver is at risk of experiencing low QoL. The data were collected through the Irish ALS Registry and via interviews on several topics with 90 patient and caregiver pairs at three time-points. The McGill QoL questionnaire was used to assess caregiver QoL—the MQoL Single Item Score measures the overall QoL and was selected as the outcome of interest in this work. Findings: The caregiver’s existential QoL and burden, as well as the patient’s depression and employment before the onset of symptoms were the features that had the highest impact in predicting caregiver quality of life. A small subset of features that could be easy to collect was used to develop a second model to use it in a clinical setting. The most predictive features for that model were the weekly caregiving duties, age and health of the caregiver, as well as the patient’s physical functioning and age of onset.
Background: Pediatric cancer diagnosis and treatment can impact the psychological adjustment and quality of life (QOL) of caregivers. Objectives: We examined: (a) the relationship between caregiver QOL and family psychosocial risk, mental health symptoms and distress concurrently, shortly after diagnosis, and six months later; and (b) which of these factors at near diagnosis can predict caregiver QOL six months later, controlling for demographic and child clinical factors. Methods: Participants were 122 caregivers in two Canadian sites. Each completed the Caregiver Quality of Life Cancer Scale, the Psychosocial Assessment Tool (PAT), the Distress Thermometer (DT), and the Hospital Anxiety and Depression Scale (HADS) near diagnosis (T1) and six months later (T2). Clinical and demographic information were also collected. Results: Clinical and demographic factors were not associated with QOL at either T1 or T2. Concurrent analyses (within T1 and T2) indicated the PAT, DT, and anxiety symptoms as significant factors contributing to caregiver QOL. Longitudinally, only T1PAT and depression symptoms significantly predicted caregiver QOL at T2. Family psychosocial risk and caregiver depression symptoms near diagnosis predict caregiver QOL six months later. These results have important implications for supporting caregivers of children with cancer. Highlights: Childhood cancer diagnosis and treatment can negatively impact on the quality of life (QOL) of caregivers of the affected child. High family psychosocial risk and elevated caregiver depression symptoms near the child's cancer diagnosis can predict poor caregiver QOL six months later. Conclusions: Early assessment of family psychosocial risk and caregiver mental health, particularly depression symptoms, can guide psychological support and prevent poor caregiver QOL. Considering the close relationship between the wellbeing of the child and caregiver, addressing caregiver mental health needs can positively impact on the QOL of the caregiver and the child with cancer.
Background: The experience of cancer is highly stressful and potentially traumatic. We assessed the presence of Post‐Traumatic Stress Symptoms (PTSS) in long‐term cancer survivors and their caregivers, while examining the association between PTSS and clinical, demographic and psychological variables in the long term. Methods: In this cross‐sectional study 212 survivor‐family caregiver dyads completed measures of post‐traumatic stress symptoms (PTSS) (Impact of Event Scale), depression and anxiety (Hospital Anxiety Depression Scale). Coping strategies, fatigue, cognitive decline, stressful life events and psychopathological history were also assessed among survivors. Data were analyzed using mixed models, accounting both for individual and dyadic effects. Results: Cancer survivors and their caregivers were assessed after a mean of 6 years after treatment. Twenty per cent of survivors and 35.5% of caregivers had possible posttraumatic stress disorder (PTSD), while 23 patients (11.0%) and 33 caregivers (15.6%) had probable PTSD. Among cancer patients, the severity of post‐traumatic symptoms was associated with an anxious coping style, previous psychopathology and depression (p < 0.001), whereas among caregivers it was associated with depression and having a closer relationship with patients (p < 0.001). Patients’ depression was associated with caregivers’ intrusion symptoms. Conclusions: High levels of cancer‐related PTSS were still present several years after treatment in both survivors and caregivers. Psychopathology may derive from complex interactions among coping, previous disorders and between‐person dynamics.
Background and Aims: Although medications for opioid use disorder (OUD), including extended‐release naltrexone (XR‐NTX), have demonstrated effectiveness, adherence is often low. We tested the preliminary efficacy of youth opioid recovery support (YORS), a multi‐component intervention designed to improve engagement and medication adherence for young adults with OUD. Design: Single‐site randomized controlled trial with 24‐week follow‐up. Setting: Community substance use disorder treatment program in Baltimore, MD, USA. Participants: Young adults aged 18–26 years enrolled in inpatient/residential OUD treatment intending to pursue outpatient OUD treatment with XR‐NTX. Twenty‐one participants were randomized to YORS and 20 to treatment as usual (TAU). The analyzed sample was 65.8% male. Intervention and comparator: Components of YORS include: (1) home delivery of XR‐NTX; (2) family engagement; (3) assertive outreach; and (4) contingency management for receipt of XR‐NTX doses. The comparator was TAU, which consisted of a standard referral to outpatient care following an inpatient stay. Measurements Primary outcomes were number of XR‐NTX doses received over 24 weeks and relapse to opioid use (defined as ≥ 10 days of use within 28 days) at 24 weeks. Findings: Participants in the YORS condition received more XR‐NTX doses [mean = 4.28; standard deviation (SD) = 2.3] compared with those in TAU (mean = 0.70; SD = 1.2), P < 0.01. Participants in the YORS group compared with TAU had lower rates of relapse (61 versus 95%; P < 0.01). Survival analyses revealed group differences on time to relapse with participants in TAU being more likely to relapse sooner compared with participants in the YORS condition [hazard ratio (HR) = 2.72, 95% confidence interval (CI) = 1.26–5.88, P < 0.01]. Conclusions: The youth opioid recovery support intervention for extended‐release naltrexone adherence and opioid relapse prevention among young adults with opioid use disorder appeared to improve treatment and relapse outcomes compared with standard treatment.
Background: The United States (US) has been at war for almost two decades, resulting in a high prevalence of injuries and illnesses in service members and veterans. Family members and friends are frequently becoming the caregivers of service members and veterans who require long-term assistance for their medical conditions. There is a significant body of research regarding the physical, emotional, and social toll of caregiving and the associated adverse health-related outcomes. Despite strong evidence of the emotional toll and associated mental health conditions in family caregivers, the literature regarding suicidal ideation among family caregivers is scarce and even less is known about suicidal ideation in military caregivers. Objectives: This study sought to identify clusters of characteristics and health factors (phenotypes) associated with suicidal ideation in a sample of military caregivers using a cross-sectional, web-based survey. Methods: Measures included the context of caregiving, physical, emotional, social health, and health history of caregivers. Results: Military caregivers in this sample (n = 458) were mostly young adults (M = 39.8, SD = 9.9), caring for complex medical conditions for five or more years. They reported high symptomology on measures of pain, depression, and stress. Many (39%) experienced interruptions in their education and 23.6% reported suicidal ideation since becoming a caregiver. General latent variable analyses revealed three distinct classes or phenotypes (low, medium, high) associated with suicidality. Individuals in the high suicidality phenotype were significantly more likely to have interrupted their education due to caregiving and live closer (within 25 miles) to a VA medical center. Conclusions: This study indicates that interruption of life events, loss of self, and caring for a veteran with mental health conditions/suicidality are significant predictors of suicidality in military caregivers. Future research should examine caregiver life experiences in more detail to determine the feasibility of developing effective interventions to mitigate suicide-related risk for military caregivers.
Background: Although parents often provide care for adult children coping with serious mental illness, adult siblings are typically expected to assume caregiving responsibilities when parents are no longer able to do so. However, relatively little is known about how family relationships and adults' own reactions to their sibling's mental illness may relate to their intentions to provide future sibling care. Objectives: The present study examined how adults' reports of parental practical support and mutual emotional support with parents were related to their feelings of personal loss due to mental illness and their intentions to provide future care for their sibling with mental illness. Methods: A total of 107 adults (43 men; 64 women; age M = 32.4 years; SD = 6.56) with a sibling with mental illness completed an online survey about relationships with their parents, personal loss due to mental illness, and intentions to provide future sibling care. Results: Present findings suggest that perceived parental social support moderated relationships between adults' reports of personal loss and intentions to provide future sibling care. Overall, adults who reported higher levels of personal loss generally reported greater intentions to provide future care for their sibling with mental illness when they perceived themselves as having more practical and mutual emotional support with their parents and had lower intentions to provide future care when they perceived themselves as having less mutual emotional support with their parents. Conclusions: Findings highlight the importance of adults' perceptions of personal loss and parental social support in their intentions to provide future sibling care and have implications for family caregiving interventions. Highlights: Adults are often expected to provide future care for sibling with mental illness Adults' views of parental support and personal loss were related to future sibling caregiving intentions Focus on family relationships can improve caregiving for people with mental illness
Context: Hospice is a service for those with a life expectancy of six months or less. Family caregivers suffer from depression and anxiety as they care for their loved one until they die. Little is known about how research participants decide to consent to participate in clinical trials in the hospice setting. Objectives: This pilot study sought to answer two research questions: 1) In what way do demographic characteristics, mental health, and perceived caregiving experience impact the decision by caregivers to participate in hospice clinical trials? 2) In what ways do the perceived physical, psychological, economic, familial, and social dimensions of caregivers' lives influence their decision to participate in hospice clinical trials? Methods: The characteristics and stated reasons for consent of hospice caregivers participating in a clinical trial were compared with individuals who refused clinical trial consent and only consented to this pilot study. Demographic, mental health, and perceptions of caregiving experience were measured as influencers to the consent decision. Recruitment calls were recorded and coded using framework analysis to identify perceived benefits and burdens impacting the decision to consent to the clinical trial. Results: Overall, trial participants were more often adult children to the patient (55% vs. 21%, P = 0.005), younger (56 vs. 63 years, P = 0.04), and employed (47% vs. 24%, P = 0.02) as compared with those who did not consent to participate in the trial. Reported levels of depression, anxiety, and quality of life were not significantly different between those who chose to participate in the clinical trial and those who participated only in this pilot study; however, caregiver burden was higher for those consenting to the clinical trial (4.05 vs. 7.16, P < 0.0001). Perceived benefits expressed by both groups were largely psychological as participants felt positive about contributing to science. Burdens expressed by both groups were predominately physical as they related to hesitation to participate in the intervention because of technology or the burdens of caregiving. Conclusion: The benefits and burdens model for clinical trial participation is applicable to the caregiver experience in the hospice setting. Understanding the perceptions and dimensions of benefits and burdens to potential study participants is critical to not only the intervention design but also the tailoring of recruitment contacts and informed consent process.
Backgrounds and Objectives: Little is known about how families respond to pediatric advance care planning. Physicians are concerned that initiating pediatric advance care planning conversations with families is too distressing for families. We examined the effect of family centered pediatric advance care planning intervention for teens with cancer (FACE-TC) advance care planning on families' appraisals of their caregiving, distress, and strain. Methods: In a randomized clinical trial with adolescents with cancer and their families conducted from July 2016 to April 2019 in 4 tertiary pediatric hospitals, adolescents and family dyads were randomly assigned at a 2:1 intervention/control ratio to either the 3 weekly sessions of FACE-TC (Advance Care Planning Survey; Next Steps: Respecting Choices; Five Wishes) or treatment-as-usual. Only the family member was included in this study. Generalized estimating equations assessed the intervention effect measured by Family Appraisal of Caregiving Questionnaire. Results: Families' (n = 126) mean age was 46 years; 83% were female, and 82% were white. FACE-TC families significantly increased positive caregiving appraisals at 3-months postintervention, compared with those in the control group (β = .35; 95% confidence interval [CI] 0.19 to 0.36; P = .03). No significant differences were found between groups for strain (β = -.14; 95% CI = -0.42 to 0.15; P = .35) or distress (β = -.01; CI = -0.35 to 0.32; P = .93). Conclusions: Families benefited from participation in FACE-TC, which resulted in positive appraisals of their caregiving for their child with cancer, while not significantly burdening them with distress or strain. Clinicians can be assured of the tolerability of this family-supported model.
Background: This study used quantitative and qualitative research methods to analyze how acute hepatic porphyria (AHP) affects patients with varying annualized porphyria attack rates. The overall impact of AHP on patients and caregivers, including their quality of life, was explored. The nature and treatment of acute attacks, experiences of long-term heme arginate treatment and access to other appropriate treatment, and the extent of and treatment for chronic symptoms were also investigated within this study. Methods: Patient and caregiver data were collected via an online survey of members of the British Porphyria Association, followed by an optional 1-h telephone interview. Results: Thirty-eight patients and 10 caregivers responded to the survey. Of those, 10 patients and three caregivers completed follow-up interviews. Overall, 19 patients (50%) had experienced an acute attack within the previous 2 years, and the severity and types of symptoms experienced during or between acute attacks varied considerably. There were no clear definitions among patients for ‘mild’ or ‘severe’ attacks. Treatments and treatment settings used to manage attacks also varied. Following unsatisfactory care experiences at hospitals, some patients reported avoiding further hospital services for later attacks. Therefore, using settings of care as a measure of attack severity should be avoided. Ninety-four percent of patients also experienced chronic symptoms, which were as varied as acute attacks. Pain was the predominant chronic symptom and was managed with opioids in severe cases. Regardless of AAR, porphyria heavily impacted the daily lives of patients and caregivers. Although patients experiencing frequent attacks generally endured a greater impact on their daily life, patients with less frequent attacks also experienced impacts on all domains (social, leisure activities, relationship with family, relationships, psychological wellbeing, finances, employment, and study). Caregivers were most affected in the finance, relationships with family, and employment domains, and just over half of the caregivers reported a moderate impact on their psychological wellbeing. Conclusions/implications: The burden of illness with AHP is high across all patients, regardless of frequency of attacks, and AHP negatively affects patients and caregivers alike.
Background: Parkinson’s disease (PD) has a large impact on patients’ physical and mental health, which also greatly affects their family caregivers. Deep brain stimulation (DBS) has emerged as an effective treatment for PD, but different authors have expressed their concerns about the potential impact of DBS on personality and identity. Objectives: Our study aims at better understanding how patients and family caregivers experience life with PD and DBS, the impact of both on their personal and social lives, and their perception of the changes that have occurred as a result of the disease and the treatment. Methods: Our study applies a multimodal approach by means of narrative semi-structured interviews and drawings. Findings: Seven principal themes have been identified: “everyone’s Parkinson’s is different”, “changing as a person during the disease”, “going through Parkinson’s together”, “DBS improved my life”, “I am treated with DBS but I have Parkinson’s still”, “DBS is not perfect”, and “being different after DBS”. PD is perceived as an unpredictable and heterogeneous disease that changes from person to person, as does the effect of DBS. While DBS side-effects may have an impact on patients’ personality, behavior, and self-perception, PD symptoms and drug side-effects also have a great impact on these aspects.
Background: Despite the well-known role of parents as caregivers, few studies have addressed their health outcomes related to the Zika virus epidemic. Methods: A cross-sectional study was carried out with 146 primary caregivers of children 15–26 months of age, with laboratory and/or clinical evidence of Zika infection between August and October 2017 in three Brazilian municipalities: João Pessoa and Campina Grande in the state of Paraíba and Fortaleza in the state of Ceará. Caregivers reported on their child's life and health, family circumstances and underwent screening for stress using the Parenting Stress Index-Short Form. Children were evaluated for developmental delays and clinical outcomes. Differences in the prevalence of risk factors between caregivers with high or clinically relevant stress and those with normal stress were evaluated. Results: Of the 146 participants, 13% (n = 19) were classified as having high or clinically relevant stress, all of them mothers. The two risk factors significantly and independently associated with high levels of stress, compared with individuals with normal stress levels, were "reporting difficulty in covering basic expenses" (adjusted OR 3.6 (95% CI 1.1–11.8; p = 0.034)) and "having a child with sleep problems" (adjusted OR 10.4 (95% CI 1.3–81.7; p = 0.026)). Conclusions: Some factors seem to contribute significantly more than others to the level of stress experienced by caregivers of children with evidence of Zika virus congenital infection. Interventions and preventive strategies should also target caregivers, who in turn will be able to respond to the unique characteristics of their child.
Background: This study investigated whether parental caregiving burden changed during adjunct multi-family therapy of adolescent anorexia nervosa and eating disorders not otherwise specified (EDNOS) and whether caregiver burden at baseline and changes in caregiver burden during treatment were associated with treatment outcome. Methods: Twenty-four females, 13 to 16 years old, and their parents, participated in the study. Caregiver burden was measured with the Eating Disorders Symptom Impact Scale, by mothers (n = 23) and fathers (n = 22). Treatment outcome was measured by adolescent body mass index, level of global functioning and self-rated eating disorder symptoms by the Eating Disorders Examination Questionnaire 4.0. Results: All patient outcomes improved and overall caregiver burden decreased significantly during treatment. When broken down in aspects of caregiver burden the decrease in parental perceived isolation, was found to be associated with improvement of BMI and Children's Global Assessment Scale. When analyzing fathers and mothers separately, we found that maternal feelings of guilt and paternal perceived burden of dysregulated behaviors at base-line were correlated to treatment outcome. Conclusions: Future studies are needed to clarify the role of caregiver burden as a potential mediator of treatment results.
Background: Electronic medication monitoring (EMM) is a digital tool that can be used for tracking daily medication use. Previous studies of EMM in asthma management have been conducted in adults or have examined pediatric interventions that use EMM for less than 1 year. To understand how to improve EMM-enhanced interventions, it is necessary to explore the experiences of parents of children with asthma, recruited from outpatient practices, who completed a 12-month intervention trial. Objective: The objective of our study was to use qualitative inquiry to answer the following questions: (1) how did using an EMM-enhanced intervention change parents'/caregivers’ experiences of managing their child’s asthma, and (2) what do parents recommend for improving the intervention in the future? Methods: Parents were recruited from the intervention arm of a multicomponent health intervention enhanced by Bluetooth-enabled sensors placed on inhaler medications. Semistructured interviews were conducted with 20 parents of children aged 4-12 years with asthma. Interviews were audio-recorded, transcribed, and inductively analyzed using a constant comparative approach. Results: Interview participants reflected an even mix of publicly and privately insured children and a diverse racial-ethnic demographic. Parents discussed 6 key themes related to their experience with the EMM-enhanced intervention for the management of their child's asthma: (1) compatibility with the family's lifestyle, (2) impact on asthma management, (3) impact on the child’s health, (4) emotional impact of the intervention, (5) child’s engagement in asthma management with the intervention, and (6) recommendations for future intervention design. Overall, parents reported that the 12-month EMM intervention was compatible with their daily lives, positively influenced their preventive and acute asthma management, and promoted their child's engagement in their own asthma management. While parents found the intervention acceptable and generally favorable, some parents identified compatibility issues for families with multiple caregivers and frustration when the technology malfunctioned. Conclusions: Parents generally viewed the intervention as a positive influence on the management of their child's asthma. However, our study also highlighted technology challenges related to having multiple caregivers, which will need to be addressed in future iterations for families. Attention must be paid to the needs of parents from low socioeconomic households, who may have more limited access to reliable internet or depend on other relatives for childcare. Understanding these family factors will help refine how a digital tool can be adopted into daily disease management of pediatric asthma.
Background: Unresolved pain is related to neuropsychiatric symptoms (NPS) in persons living with dementia (PLWD), and an increase in NPS is distressing for PLWD and their caregivers. Hence, we examined whether pain in PLWD was related to caregiver burden and whether caregiver upset with NPS mediated this relationship. Methods: We examined, cross-sectionally, the relationships among pain in PLWD, caregiver burden, and upset with NPS. Data from 272 PLWD and their caregivers who participated in the Advancing Caregiver Training (ACT) trial were analyzed using structural equation modeling (SEM). Results: Model fit was satisfactory, and caregiver upset with NPS fully mediated the association between pain in PLWD and caregiver burden. Caregiver upset with NPS helps explain the relationship between pain in PLWD and burden in their caregivers. Pain and NPS are amenable to modification, as is caregiver burden, suggesting great opportunity to impact the lives of PLWD and their caregivers.
Surrogate decision makers (SDMs) are challenged by difficult decisions at the end of life. This becomes more complex in young adult patients when parents are frequently the SDMs. This age group (18 to 39 years old) commonly lacks advanced directives to provide guidance which results in increased moral distress during end of life decisions. Multiple factors help guide medical decision making throughout a patient's disease course and at the end of life. These include personal patient factors and SDM factors. It has been identified that spiritual and community group support is a powerful, but inadequately used resource for these discussions. It can improve patient-SDM-provider communications, decrease psycho-social distress, and avoid unnecessary interventions at the end of life.
Background: Family caregivers often report high levels of distress, including depressive symptoms, anxiety, and reduced quality of life. There is a need for a greater understanding of the factors influencing, explaining, and maintaining psychological distress in family caregivers. Aim: The aim of this study was to examine whether avoidance strategies such as thought suppression (WBSI), psychological inflexibility (AAQ-II), and, and caregiver experiential avoidance (EACQ) predict psychological distress (BDI-II, GAD-7) and quality of life (WHOQOL) in family caregivers aged 60 and over. We hypothesized that these avoidance strategies would explain elevated levels of psychological symptoms and lower quality of life. Method: Altogether, 149 family caregivers completed self-report measures of depressive symptoms, anxiety, quality of life, thought suppression, psychological inflexibility and caregiver experiential avoidance. We conducted correlation and regression analyses to assess the associations and the predictive ability of these constructs. Results: Together, psychological inflexibility and thought suppression accounted for between 40 and 46% of the variance in the depression and anxiety outcomes and 15% of the variance in the physical domain of quality of life. Unwanted thoughts, the subcomponent of thought suppression, was strongly associated with symptoms of depression and anxiety, and with physical and psychological quality of life. Conclusion: Thought suppression and psychological inflexibility played a significant role in explaining family caregivers’ symptoms of depression and anxiety. In addition, psychological inflexibility was significantly related to quality of life. This suggests the need for acceptance-based strategies to handle thought suppression and psychological inflexibility.
Objectives: Heart failure patients and their family care partners experience poor mental health, yet the majority of the research focuses on patients and care partners separately. Guided by the Theory of Dyadic Illness Management, the purpose of the current study was to identify distinct patterns of dyadic mental health in heart failure and identify the individual, dyadic and familial factors associated with group membership. Method: Fifty nine heart failure community-dwelling patients and their spouse care partners were recruited from an outpatient heart failure clinic. Mental health was operationalized by depressive symptoms, measured with the Patient Health Questionnaire-9 (PHQ-9) measure of depression. Distinct groups of dyadic mental health were determined by categorizing depression scores within dyads. Results: Three groups of dyadic mental health were identified: an optimal dyadic mental health group (31%), a poor dyadic mental health group (32%) and an incongruent dyadic mental health group (37%). Patient age, patient fatigue, patient concealment, incongruent dyadic appraisal of pain interference and social/familial support were significantly associated with group membership. Conclusion: Findings underscore the salience of a dyadic approach to health and the clinical relevance of identifying patterns of dyadic mental health so we may determine those most in need of intervention.
Background: Cancer patients and their family caregivers experience various losses when patients become terminally ill, yet little is known about the grief experienced by patients and caregivers and factors that influence grief as patients approach death. Additionally, few, if any, studies have explored associations between advance care planning (ACP) and grief resolution among cancer patients and caregivers. Methods: To fill this knowledge gap, the current study examined changes in grief over time in patients and their family caregivers and whether changes in patient grief are associated with changes in caregiver grief. We also sought to determine how grief changed following the completion of advance directives. The sample included advanced cancer patients and caregivers (n = 98 dyads) from Coping with Cancer III, a federally funded, multi-site prospective longitudinal study of end-stage cancer care. Participants were interviewed at baseline and at follow-up roughly 2 months later. Results: Results suggest synchrony, whereby changes in patient grief were associated with changes in caregiver grief. We also found that patients who completed a living will (LW) experienced increases in grief, while caregivers of patients who completed a do-not-resuscitate (DNR) order experienced reductions in grief, suggesting that ACP may prompt “grief work” in patients while promoting grief resolution in caregivers.
Background: Because of an expected increase in the number of family caregivers, there is a growing public and scientific interest in family caregiving and more specifically in the combination of family care with paid employment. It is important to gain insight in the family caregivers' strain and determining factors in the job and family domain. Aim: The aim of the study was to examine the associations of job and family demands and job and family resources with indicators of caregivers' psychological strain, that is caregiver burden, work‐related emotional exhaustion and general ill mental health. In our research, we focused on individuals who combine paid employment with family caregiving. Methods: A cross‐sectional design was used. The study sample was derived in 2011 from a Dutch financial organisation and a healthcare organisation. A digital fully structured questionnaire was used. The sample consisted of 187 employees who identified themselves as family caregivers. Descriptive statistics and hierarchical linear regression analysis were performed. Results: Job demands (i.e. workload, work–family conflict) and family demands (i.e. family care hours and family–work conflict) were significantly positively associated with all three domain‐specific indicators of strain. The resources of work–family and family–work enrichment and autonomy did not contribute to less experienced strain. More supervisor and colleague support was associated with lower ill mental health. Conclusion: Our study showed that job demands (workload, work–family conflict) and family demands (family care hours, family–work conflict) were clearly associated with caregiver strain, while associations for job and family resources were not evident. It remains necessary to pay attention to the demanding aspects of dual roles of family caregivers but also to investigate the resources they have available at work as well as in their home situation and explore their potential reducing effect on family caregivers' strain.
Background: Mental health professionals have a responsibility to ensure the best possible quality of care. Family is strongly involved in the patient's everyday life. Objectives: The aim of this study was to investigate the relationship between health care professionals' perception of the quality of care, attitudes of family involvement and their own sense of coherence. Methods: A descriptive quantitative study with fifty-six health professionals, completed "Quality in Psychiatric Care–Community Outpatient Psychiatric Staff", "Families' Importance in Nursing Care–health professionals' attitudes", "The Sense of Coherence Scale-13". Results: The health professionals perceived quality as high and did not perceive the families as a burden.
Objective: The aim of this study was to examine how the burden of caregivers of patients with an advanced oncological illness mediates the relationship between positive aspects of care, depression and anxiety. Methods: Quantitative study with a cross‐sectional design. One hundred informal adult caregivers of patients with advanced oncological illness who attended the pain and palliative care unit or the psychological unit at the Instituto de Cancerologia Clinica las Americas (Medellin, Colombia) completed self‐report assessments including positive aspects of care (PAC), burden and anxiety/depression measured using the HADS (Hospitalized Anxiety Depression Scale). The partial least squares Structural Equation Modelling (PLS‐SEM) approach was selected to validate the hypotheses of the study. Results: Most of the participants were women (86%), with a mean age of 46.52 years (SD=15.05). Most of the participants reported experiencing both PAC and anxiety. They also scored low for burden. PAC exerted a negative effect on Burden, whereas Burden contributed positively to Anxiety and Depression. The indirect impact of PAC on Anxiety and Depression was significant p < .00. Conclusions: Positive aspects of care in advanced cancer caregivers constitutes a protective factor against caregiver's burden, depression and anxiety. Health staff can promote caregivers' adaptation and wellbeing emphasizing these PAC.
Objective: The vital role played by primary caregivers in caring for cancer patients is well‐recognized, but the caregiver burden and impact on family functioning to caregivers’ mental health is poorly understood. This study examined the prospective and reciprocal relationships between family functioning, caregiver burden, and mental health. We aimed to determine whether inferior family functioning and heavy caregiver burden act as risk factors for mental health, as consequences of mental health, or both. Methods: Participants were 187 primary caregivers of cancer patients. They completed questionnaires with standardized measures assessing family functioning, caregiver burden, and mental health. A quantitative longitudinal design and a cross‐lag model were used to test the reciprocal relationships between variables at three time points with 6‐month intervals during the first year of early‐stage cancer diagnosis and treatment. Results: Family functioning did not predict participants' future mental health, but their mental health state predicted future caregiver burden and family functioning. Caregiver burden also predicted participants' future mental health. There was a dynamic reciprocal relationship between caregiver burden and mental health over time. Conclusions: The findings of this study emphasize the adverse effects of caregiver burden and may contribute to shedding light on the distinct mechanisms that underlie the relationships between caregiver burden, family functioning, and mental health. Our findings indicate the necessity of developing interventions to reduce the burden of caregiving and to facilitate family functioning. They will provide direction for family‐centered nursing to meet primary caregivers' mental health needs in the care of cancer patients.
Background: The protective effects of social support for caregiver mental health are well documented, however the differential impact of support providers (partner, child, family, siblings, friends, professionals) and types (perceived, received) remain unclear. Methods: Observational data from 21 independent studies, involving a pooled sample of 2273 parents, stepparents and grandparents of children (aged ≤ 19) with autism spectrum disorder (ASD) were examined. Pearson's r, publication bias and heterogeneity were calculated using random effects modelling. Results: Significant associations were noted between lowered depressive symptoms and positive sources of support, regardless of support type. Conclusions: Parental mental health can be enhanced by strengthening close personal relationships alongside connections with formal support services. Longitudinal research is needed to explore support need and perceived helpfulness over time.
The existing interventions for informal caregivers assist with managing health outcomes of the role burden. However, the deeper meaning-making needs of informal caregivers have been generally neglected. This paper reflects on the meaning-making needs of informal caregivers, through the theory of narrative identity, and proposes a new approach – the Transformative Video Design technique delivered via video storytelling. Transformative Video Design assists informal caregivers to re-create a cohesive caregiving story and incorporate it into the narrative identity. The technique is used as a stimulus for triggering the self-re-structure within the narrative identity and facilitating role transformation.
Background: Informal caregivers for patients with head and neck cancer perform complex caregiving tasks on a daily basis, but caregivers' needs are rarely acknowledged or addressed in current healthcare practice. Methods: A thorough review of CINAHL®, MEDLINE®/PubMed®, and PsycINFO® was conducted by the authors. 266 manuscripts were identified, with no time limit. The search was conducted in November2019. In total, 19 articles were included in the review. Throughout the disease trajectory, caregivers' psychological and emotional support needs are consistently high, whereas information needs diminish overtime. Implications for practice: Informal caregivers are imperative in supplementing the continuing care demands of people living with head and neck cancer; however, they are at risk for experiencing caregiving burden. Skill training and psychological support interventions are needed for educating and supporting caregivers.
We focus attention on problems that are affecting the informal caregivers of patients with neurodegenerative disorders in the time of COVID‐19. The pandemic is increasing difficulties in the management of the frailest people and their isolation is actually even more tangible than it was in the past. The social restrictions and the lockdown of many activities are putting the system of care provided by informal caregivers on the edge of collapse. We incite the scientific community to face these concerns and provide clinicians clear indications for assisting and supporting caregivers in the care of their relatives during this period. We suggest that e‐health programs could become the ideal “environment” to favor the continuity of care for patients with neurodegenerative conditions and guarantee the required support to their caregivers, both directly in terms of psychological management and indirectly for helping them in disease management.
Background: Perceived spiritual needs may increase when patients with advanced cancer and their family caregivers are confronted with the challenges of physical and psychological distress. Given the intertwined relationships between patients and family caregivers, their interdependence should be considered to understand how perceived spiritual needs affect the quality of life of their own and of their partner. Methods: This study used the Actor-Partner Interdependence Model as the conceptual model to investigate the mutual effects of perceived spiritual needs on the quality of life in patients with advanced cancer and their family caregivers after being admitted to hospice. Findings: This cross-sectional study used the baseline data of a large clinical trial and identified that patients with cancer and their family caregivers perceived similar spiritual needs associated with the community and outlook needs and had fewer unmet spiritual needs. After controlling for partner effects, perceived outlook needs shown in patients significantly predicted their own functional well-being and social/spiritual well-being. Outlook and community needs perceived by family caregivers also significantly predicted their own mental health. Conclusion: Although partner effects were not shown as expected, the findings provide insight into the mutuality of spirituality and demonstrate the necessity of providing timely and ongoing spiritual assessment and care.
Background and Objectives: Family caregivers often have other family members helping to provide care. The purpose of our study was to examine relationships between care coordination quality among family members and the following caregiver outcomes: caregiver mental health (depressive symptoms, anxiety), social activity restrictions, and caregiver burden. Research Design and Methods: Secondary analysis was conducted using data from the 2017 Pittsburgh Regional Caregivers' Survey. Six hundred and fifty-five caregivers who had other family members helping with care reported discordance in care coordination, depressive symptoms, anxiety, social activity restrictions, caregiving burden, and covariates such as demographics and known risk factors for negative caregiver outcomes. We used multiple logistic regression and negative binominal expansion models in the analysis. Results: Discordant care coordination was associated with higher levels of caregiver depressive symptoms (p <.001), anxiety (p <.01), social activity restriction (p <.001), and caregiver burden (p <.001) after controlling for known risk factors. Discussion and Implications: We found that lower quality of family care coordination was associated with negative caregiver outcomes. Future research should further investigate the dynamics of family care coordination and impacts on both caregivers and care recipients. The results suggest that caregiver interventions attempting to understand and decrease care coordination discord should be a priority.
Background: Multi-family therapy for Bulimia Nervosa (MFT-BN) was developed in response to the modest outcomes following both Family Therapy and Cognitive Behavior Therapy for adolescents with BN. BN impacts individuals and their family members with high levels of carer stress. MFT-BN targets barriers to treatment including low motivation to change, hostility and criticism, negative affect alongside emotion dysregulation and common comorbidities. MFT-BN enhances treatment, providing a community of support and acquisition of emotional regulation and interpersonal skills. Methods: The study describes the clinical characteristics of the group of participants to whom MFT-BN is offered and presents the outcomes of families who have participated in it. Findings: Prior to MFT-BN, adolescents who received it were more likely to have self-harmed and had elevated levels of eating disordered cognitions than those who did not receive MFT-BN. Following MFT-BN, parents report decreases in the negative experiences of caregiving and in their own symptoms of anxiety. Adolescents report reductions in anxiety and depression alongside improvement in emotion regulation. Improvements in symptoms of eating disorders include reductions in eating disorder cognitions and modest reductions in binge and purge symptoms after 14 weeks of treatment. Adolescents who participated in MFT-BN were less likely to drop out of outpatient treatment.
Introduction: Distance caregivers (DCGs) are a growing population with substantial contribution to informal care. While a reasonable amount is known on the determinants of motives and willingness to provide local informal care, and the local caregiver outcomes, reports for the distance caregiving population are lacking. An evidence synthesis of what motivates and makes DCGs willing to care from a distance and the impact of that care on their mental and physical health would highlight any gaps or consensus in knowledge. This would guide the research needed towards the development of tailored interventions, in order to support DCGs and promote the sustainability of distance care. Methods and analysis: This protocol adheres to Preferred Items for Reporting of Systematic Reviews and Meta-Analyses Protocols guidelines and the Joanna Briggs Institute (JBI) Methodology for mixed-method reviews. A comprehensive search strategy will be conducted in four electronic databases (CINAHL, MEDLINE, PubMed and PsycINFO). Grey literature will also be assessed to minimise publication bias. Two independent reviewers will assess each study for inclusion and any discrepancies will be resolved with the consultation of a third reviewer. Eligible studies for inclusion will be English language studies exploring the motives and willingness to care for a care recipient with a chronic disease, disability or frailty from a geographical distance; or studies focusing on the mental and physical health outcomes of DCGs. Qualitative and quantitative data will be integrated in a single qualitative synthesis following the JBI convergent integrated approach. Study quality will be assessed using the Mixed Methods Appraisal Tool version 2018. Ethics and dissemination: Ethical approval is not required for this study as no primary data will be collected. Findings will be disseminated through peer-reviewed publication and presentations at academic conferences and lay summaries for various stakeholders.PROSPERO registration numberCRD42020156350.
Purpose: Depression is the most common negative reaction among family caregivers of terminal cancer patients, persisting to post-bereavement. A modifiable factor associated with depression is mortality communication (i.e., caregiver-relative communication about illness and impending death). The purpose of this study was to examine the impact that mortality communication has on family caregiver's depression after bereavement, and to translate into Danish and examine the construct validity of the caregiver communication with patients about illness and death scale (CCID; Bachner et al. Omega 57(4):381-397, 2008). Methods: A total of 1475 Danish family caregivers (partners and adult children) of terminal cancer patients, in both general and specialized palliative care settings, participated in the study. Respondents completed questionnaires twice: during caregiving and 6 months after the death of their relative. Results: Results of the hierarchical regression analyses showed that discussing illness and death with one's ill relative was associated with fewer depressive symptoms after bereavement, adjusted for depressive symptoms in the final year of caregiving and socio-demographic characteristics. For both partners and adult children, each of the five CCID items contributed significantly to measurement of a mortality communication latent construct. Moreover, the relative contribution of all five items was consistent across caregiver groups supporting the reliability of measurement. Conclusion: As in Hebrew, Arabic, and English, the CCID can be used with confidence among Danish family caregivers. Mortality communication is a significant factor that may predict depressive symptoms while caregiving and also after the care recipient's death. This factor should be considered for inclusion in early family caregiver interventions.
Objectives: The present study aimed to explore the modifiable factors of behavioural and psychological symptoms of dementia (BPSD) among patients residing at home in terms of patient, caregiver and environmental factors. Methods: A cross-sectional survey of 193 patients with dementia residing at home and their caregivers who visited the memory clinic of the Department of Neurology in a tertiary (the highest level) hospital in China from November 2018 to May 2019 was performed. Results: Exacerbated BPSD were associated with patient (old age, high education level, increased dementia severity, and the use of psychotropic drugs), caregiver (low positive aspects and high expressed emotion) and environmental (poor home environment) factors. The use of psychotropic drugs by the patient, positive aspects and expressed emotions of the caregiver, and home environment were modifiable factors that provided evidence for the direction of intervention for BPSD among patients residing at home.
Background: Being an informal caregiver (IC) of a cancer patient is often associated with psychological distress. We have recently, in a randomized controlled trial (RCT), demonstrated efficacy of Emotion Regulation Therapy for ICs (ERT-C), evidenced as lower levels of psychological distress. Such efficacy demonstration is important, but a crucial step in improving treatments for the IC population is the identification of moderators (i.e., for whom the treatment works) and mediators (i.e., the drivers of the detected effect). Material and methods: In a sample of 65 psychologically distressed ICs (combining participants who received immediate and delayed treatment in the RCT); we investigated age, gender, and homework completion as moderators of treatment outcome. Proposed mediators were derived from the ERT model and included mindfulness, emotion regulation dysfunction, decentering, and cognitive reappraisal. Results and conclusions: The strongest moderation effect was found for homework completion, predicting improvements on psychological distress. Correlational mediation analyses generally supported the ERT model. However, temporal precedence was only established for the association between decentering and worry, where a bidirectional relation was revealed. Homework thus emerged as an important aspect of ERT-C and, albeit a bidirectional relationship, changes in decentering may precede changes in worry. Future trials should ensure the robustness of these results, hone the specificity of process measures, and further investigate the causal timeline of change.
Background: Authors of previous research have not yet analyzed the role of potential moderators in the relationship between depressive symptoms and quality of life (QOL). Aims: The aim of this study was to examine the moderating effect of mutuality between depressive symptoms and QOL in stroke survivor and caregiver dyads. Methods: This study used a longitudinal design with 222 stroke survivor-caregiver dyads enrolled at survivor discharge from rehabilitation hospitals. Data collection was performed for 12 months. We examined survivor and caregiver QOL dimensions (physical, psychological, social, and environmental), depression, and mutuality at baseline and every 3 months. Hierarchical linear modeling was used to test 4 longitudinal dyadic moderation models (1 for each QOL domain). Results: Survivors (50% male) and caregivers (65% female) were 70.8 (SD, 11.9) and 52.5 (SD, 13.1) years old, respectively. We observed no significant moderating effects of mutuality for survivors across the 4 dimensions of QOL over time. However, higher survivor mutuality was significantly associated with higher survivor psychological and social QOL at baseline. Regarding caregivers, caregiver mutuality significantly moderated the association between caregiver depressive symptoms and caregiver physical (B = 0.63, P < .05), psychological (B = 0.63, P < .01), and social (B = 0.95, P < .001) QOL at baseline, but not in environmental QOL. Higher caregiver mutuality was significantly associated with less improvement in caregiver physical QOL over time. Conclusions: Mutuality is a positive variable on the association between depression and QOL for both members of the dyad at discharge but may lead to declines in physical health for caregivers over time. Further work is needed to understand the role of mutuality on long-term outcomes and associations with increased care strain.
Background: Falls can lead to social isolation, anxiety and depression for those who fall, although little is known about how informal carers manage those at risk from falling at home. Objectives: This study aimed to explore the experiences of informal carers who care for frail, older people at risk from falling at home. Methods: A qualitative study using thematic analysis was conducted for this purpose. Data were collected via one-to-one, semi-structured interviews. Findings: Informal carers experienced social isolation, significant adjustments to their working lives, a fear of further falls, tiredness, anxiety and depression. Conclusions: These findings mirror previous observations, which have found that falling is a predictor of both physical and psychological changes, although in those who fall rather than those who care for them. This highlights the need for both health and social care services to identify the impact of care recipient falls on the informal carer.
Objectives: To provide an overview of the current use of mindfulness- and compassion-based interventions with family carers of older adults, to aid primary healthcare practitioners in their decision-making around referral to wider healthcare services. The study was guided by four research questions: what interventions are currently used; whom they are used with; why they are used; and their evidence-base in terms of acceptability and effectiveness. Methods: A scoping study using the methodological frameworks of Arksey and O'Malley and Levac et al. Searches of electronic databases (MEDLINE, CINHAL, PsycINFO), reference lists of relevant articles, and journal websites were conducted in June 2019. Search terms were developed via an iterative process, and included medical subject headings and keywords relating to mindfulness and compassion, interventions, and family carers. Articles were included if: written in English; published in a peer-reviewed journal; employed quantitative, qualitative, or mixed-method research designs; and described a mindfulness- and/or compassion-based intervention for adults identified as a family carer of an older adult. Data from included studies were charted (using a purposively-designed template), and descriptively analysed in relation to the study's research questions. Findings: From 2005 unique records, 32 primary studies were included. Seven types of mindfulness- or compassion-based interventions were broadly described within studies, including: mindfulness-based stress reduction (n = 13), mindfulness-based cognitive therapy (n = 3), meditation interventions (n = 9), acceptance and commitment therapy (n = 1), dialectical behaviour therapy (n = 1), compassion-focused therapy (n = 1), and study-specific interventions involving a combination of mindfulness and/or compassion (n = 4). Studies sampled a total of n = 991 participants and targeted six family carer sub-groups: dementia (n = 23), cancer (n = 5), amyotrophic lateral sclerosis (n = 1), chronic conditions (n = 1), cirrhosis (n = 1), and Parkinson's disease (n = 1). A variety of health outcomes were assessed across interventions, with the most common being depression (n = 26), anxiety (n = 15), burden (n = 15), quality of life (n = 14), and stress (n = 11). The evidence-base for each intervention was insufficient and too heterogeneous to make clear statements regarding effectiveness. However, based on these findings, interventions show some potential utility in supporting family carers in their role and, given a collective rate of attrition (18%), may do so in a way that is acceptable to carers. Conclusions: This scoping study highlighted the nascent use of mindfulness- and compassion-based interventions with family carers of older adults, and provided important substantive detail about what each intervention entails. Based on current evidence, a number of implications for research and practice are presented.
Background: Past trauma and exposure to violence have been related to poor emotion regulation and household violence, which can have persistent mental health effects across generations. The Family Strengthening Intervention for Early Childhood Development (FSI-ECD/called Sugira Muryango in Rwanda) is an evidence-based behavioral home-visiting intervention to promote caregiver mental health, positive parenting practices, and early childhood development among families facing adversity. In Sierra Leone and other lower- and middle-income countries, mobile health (mHealth) technology has the potential to improve health care delivery and health outcomes. Objective: This study aims to (1) apply a user-centered design to develop and test mHealth tools to improve supervision and fidelity monitoring of community health workers (CHWs) delivering the FSI-ECD and (2) conduct a pilot randomized controlled trial of the FSI-ECD to assess feasibility, acceptability, and preliminary effects on caregiver mental health, emotion regulation, caregiving behaviors, and family violence in high-risk families with children aged 6-36 months in comparison with control families receiving standard care. Methods: We will recruit and enroll CHWs, supervisors, and families with a child aged 6-36 months from community health clinics in Sierra Leone. CHWs and supervisors will participate in 1 problem analysis focus group and 2 user interface/user experience cycles to provide feedback on mHealth tool prototypes. Families will be randomized to mHealth-supported FSI-ECD or standard maternal and child health services. We will collect quantitative data on caregiver mental health, emotion regulation, caregiving behaviors, and family functioning at baseline, postintervention, and 3-month follow up. We will use a mixed methods approach to explore feasibility and acceptability of mHealth tools and the FSI-ECD. Mixed effects linear modeling will assess FSI-ECD effects on caregiver outcomes. Cost-effectiveness analysis will estimate costs across FSI-ECD versus standard care. Results: Funding for this study was received from the National Institutes of Mental Health on August 17, 2020. Institutional Review Board approval was received on September 4, 2020. Data collection is projected to begin on December 15, 2020. Conclusions: This study will provide important data on the feasibility, acceptability, and preliminary efficacy of mHealth-supported delivery of an evidence-based family home-visiting intervention in a postconflict LMIC. Trial Registration: ClinicalTrials.gov NCT04481399; https://clinicaltrials.gov/ct2/show/NCT04481399. International Registered Report Identifier (IRRID): PRR1-10.2196/25443
Background: Those caring for someone diagnosed with a neurodevelopmental disorder are at risk of experiencing depression and anxiety. However, limited research has examined risk and predictive factors associated with internalizing symptomatology in caregivers from ethnic and culturally diverse backgrounds. Aims: We aimed to identify predictive factors for internalizing symptomatology. Methods: Using standardized scales, anxiety and depression levels were measured in a predominantly Latinx sample along with their endorsed levels of familism, perceived social, and support affiliate stigma. Multivariate regression analyses were used to test the hypotheses that familism, perceived social support, and affiliate stigma are associated with self-reported depression and anxiety symptoms, separately. Results: The results indicated a significant effect of perceived social support and affiliate stigma on depression and anxiety symptoms, but no such effect of familism. Findings indicate that higher perceived social support scores predicted lower rates of anxiety and depression in caregivers. Conversely, higher affiliate stigma scores predicted higher rates of anxiety and depression. Conclusions: Results provide important clinical implications when working with Latinx families and caregivers of a family member diagnosed with a neurodevelopmental disorder.
Background: Many families coping with serious illness report experiencing financial burden, which negatively impacts coping and quality of life. Financial burden, however, is a complex construct that has been inconsistently operationalized in the literature. Aim: To review the available literature to identify, and describe the properties of, measurement tools or scales used to assess financial burden, including financial stress and strain, for families dealing with serious illness. Design: A systematic review. Data sources: Six databases were searched for articles published between 2006 and 2020. The review included studies in English, that reported empirical data, and used at least one measure of financial burden. To obtain a full copy of measures, an environmental scan was conducted. Results: A total of 31 measures were included. Only five of the total were designed for patient self-report, 23 of the total were designed for caregiver report. Whereas 11 measures relied on a single-item, 17 were multi-item. The remaining measures provided no information about target population and items. The most popular measures—based on Google Scholar citations—tended to only include one financial burden item. Given the complexity of financial burden, and its subjective and objective aspects, the utility of these single item measures remains questionable. Also, although patients may experience financial burden, there is a lack of patient-reported measures. Conclusion: To measure financial burden, we identified a need to develop and test multi-item measures, measures appropriate for patient populations and greater attention to the temporal aspects of self-report assessments.
Background: Long-term outcomes are of particular importance in evaluating interventions for family caregivers of people with dementia (PwD). So far, evidence for long-term effects (>6 months postintervention) is limited to four interventions. Objective: We examined the long-term effects of Tele.TAnDem, a telephone-based cognitive-behavioral therapy (CBT) intervention, on a variety of outcomes at 3-year follow-up, the longest follow-up of any intervention study for caregivers of PwD (without continuous support). Methods: Caregivers of PwD were randomly assigned to receive Tele.TAnDem consisting of 12 sessions over 6 months (intervention group [IG]) or usual care (control group [CG]). At 3-year follow-up (i.e., 2.5 years postintervention), 29 caregivers in the IG and 22 caregivers in the CG were still caring at home for a PwD. Results: Caregivers in the IG reported significantly lower caregiver burden and higher quality of life regarding social relationships. Conclusions: Tele.TAnDem is successful in buffering detrimental effects of caregiving on caregiver burden and social relationships in the long term. The small- to medium-sized effects lie in the range of effect sizes reported in the few previous investigations. The findings add to the scant evidence that interventions yielding long-term outcomes have to date mostly been multicomponent interventions based on CBT principles with structured techniques and at least seven sessions over more than 2 months.
Objectives: The aim of this longitudinal study was to evaluate the long-term effects of providing a therapeutic conversation intervention, based on Family Systems Nursing, to family caregivers of a close relative with advanced cancer over the period before and during bereavement. Background: To prevent adverse outcomes, caregivers need ongoing support that begins pre-loss and extends into the post-loss period. Methods: This study employed a one-group pre-test, post-test quasi-experimental design. Twenty-four caregivers participated in two intervention trials conducted over a 42-month period, receiving two intervention sessions pre-loss (Trial 1) and one intervention session post-loss (Trial 2). Results: Significant decreases in anxiety and stress were noted over the three post-loss assessments. The final post-loss stress outcome was significantly lower than the first pre-loss score. For the depression score, there was not a significant change over time within the pre- or post-loss period. Conclusions: The findings provide evidence of decreasing anxiety and stress following the implementation of an extended family nursing intervention for bereaved family caregivers.
Objective: Caregiver resilience in the context of childhood cancer treatment has been described using cross‐sectional and retrospective studies, but little is known about prospective predictors of resilience outcomes. We examined associations of demographics, cancer‐related variables, and intrapersonal and interpersonal factors at diagnosis (family psychosocial risk, perceived social support, and healthcare self‐efficacy) and psychosocial services provided during treatment with caregiver resilience outcomes at the end of treatment. Methods: For a study validating a family psychosocial risk screener, 314 primary caregivers completed the measures at diagnosis of their child (aged 0–17 years) and when cancer treatment ended. Resilience outcomes were ratings of distress, posttraumatic stress, and posttraumatic growth. Multiple regression analyses evaluated the relative contribution of hypothesized predictors. Results: Caregivers endorsed clinically significant distress, moderate posttraumatic growth, and low posttraumatic stress based on norms. Posttraumatic growth was not associated with posttraumatic stress or distress, which were significantly associated with each other. Over and above resilience at diagnosis, family psychosocial risk was associated with resilience at the end of treatment. Perceived social support, healthcare self‐efficacy, and psychosocial services provided demonstrated associations with resilience in univariate analyses, but demographics and cancer‐related variables did not. Conclusions: Resilience and family psychosocial risk at diagnosis were the strongest predictors of caregiver resilience outcomes at the end of the treatment. Intrapersonal and interpersonal predictors were weaker and varied by resilience measure. Consistent with psychosocial standards of care, broad evaluation of caregiver risks, resources, and resilience processes and outcomes is recommended at diagnosis and through the treatment trajectory including the end of treatment.
Background: The daily challenges of patients with pneumoconiosis and their caregivers in living with and providing care for this disease remain unexplored. Methods and findings: As guided by the interpretive description, we found that pneumoconiosis patients suffered from highly anxiety-provoking symptoms and physical debilitation, which evoked high levels of distress and sense of impending death. The reduced functional capacity disrupted patients' role functioning and self-esteem. The perceived stigma of the embarrassing symptoms and treatments further disrupted their self-concept and social lives. Providing care for pneumoconiosis patients was demanding and burdensome, which jeopardized family caregivers' physical, emotional, and social well-being, and the relationship strain with the patients added further frustration to them. The perceived caregiving gain supported them to fully engage in daily caregiving. Conclusions: To improve the well-being of pneumoconiosis patients, a comprehensive empowerment-based dyadic care model is required to optimize adaptive behavioral changes and self-esteem, and improve self-efficacy in disease management for this cohort.
Background: Eating disorders are widely recognized as serious illnesses, with complex psychological and physiological comorbidities. Affected individuals face a protracted and challenging treatment journey which, particularly for children and adolescents, requires significant input from family members as carers. This study investigated the perspectives and experiences of those caring for family members with an eating disorder diagnosis. Method: Participants were carers of affected individuals with an eating disorder, and were recruited from an online survey, subsequently consenting to a semi-structured qualitative interview. Inductive thematic analysis was undertaken to identify themes. Results: Most participants in the sample were parents of affected individuals. Significant and ongoing psychological and emotional impacts were identified across the sample. The diagnosis, treatment journey and overall impact of the carer role created a situation captured by the over-arching theme ‘life is different now’. Impacts profoundly influenced relationships and were felt across all aspects of life by carers, affected individuals and other family members. Heightened worry and vigilance experienced by carers continued beyond improvement or recovery. Conclusions: This research highlighted challenging and often exhausting impacts felt by carers due to their pivotal role in eating disorder treatment. Inadequate support for most carers in this sample has clear implications for families as well as service and funding providers. Further research should more fully investigate carer experience with different eating disorders to explore the type of support necessary to build capacity and resilience to reduce carer burden.
Background: Violent behavior is one of the most common symptoms of people who have schizophrenia. Caring for family members who have schizophrenia can be a stressor for other family members. The stressors can be stressful for the caregiver. Family caregivers require coping strategies to overcome the stressors. This study aims to determine the relationship between stress levels and coping strategies of family caregivers who treat schizophrenic patients with a risk of violent behavior. Design and Methods: The research design engaged cross-sectional with the purposive sampling technique by involving 87 caregiver families who who treat schizophrenic patients. The data was collected by using the Perceived Stress Scale (PSS) and Ways of Coping (WOC) questionnaires. This study was analyzed by employing the Chi-Square test to determine the relationship between stress levels and coping strategies in the caregiver family. Results: This study shows that stress levels are not significantly associated with coping strategies in family caregivers. Conclusion: Good supports from health and social service professionals are required to help family caregivers cope with their stressors well.
Background: This study explored the transformative outcomes of programmes and activities for family caregivers of people with dementia in Taiwan. Methods: Transformative learning theory was used to examine the relationship between participation and positive outcomes. A group of nonparticipants was included to provide a complete picture of the transformative learning process. In this qualitative study, 18 participants were interviewed with audio recording, and the data were transcribed verbatim. A thematic analysis was performed to determine the themes and subthemes in the results. Findings: The results revealed that participation in programmes and activities was not the single factor leading to transformative outcomes; family support, self-adjustment, the ability to cope, and coordinated intervention in accordance with individual preferences and needs also facilitated transformative outcomes for nonparticipants. Conclusions: Further studies should focus on interventions modifying factors of perceived caregiver burden, for instance, by providing psychological support to informal caregivers, offering programmes and activities targeting the management of neuropsychiatric symptoms in patients with dementia, and supporting quality of life.
Introduction: Substance use affects it’s user and also risks the health of the caregivers. Objectives: Identify persons at risk of developing substance use disorder, assess the burden borne by the caregivers and development of psychiatric illness. Methods: Clinical assessment based on DSM-V criteria was performed for SUD diagnosis. Data was recorded using Substance use risk profile scale (SURPs) on the patient and the caregivers were evaluated using M.I.N.I. International Neuropsychiatric Interview (M.I.N.I) and caregiver’s strain index (CSI). Results: 81 participants-96% were male, mean age 32.4 years, 53.1% married, 72.8% employed and 52% lived in joint family system). The substance use ascertained were alcohol 24.7%, benzodiazepines 21%, cannabis 34.6%, opioid 30.9% and others 4.8%. 50% had substance use lasting 2-9 years. 50.6% reported starting as a recreation and the perpetuating factor for 49.4%. was emotional distress. 44% quit due to family pressure. On SURP, 85.2% demonstrated anxiety sensitivity, 96.3% were hopeful, 66% sensation seeking and 77% were impulsive. Caregiver mean age was 37.8 years, with two-third being parents and spouses. The burden reported was sleep disturbance 59.3%, inconvenience (61.7%) physical strain 46.9%, confining 50.6%, family adjustment 76.5%, plan changes 65.4%, emotional adjustment 88.9%, behavioral adjustment 74.1%, financial strain 80.2%, work adjustment 46.9%, 71.6% felt overwhelmed and 67.9% were upset about the changes from former self. Major depressive disorder was identified in 51.9% of the caregivers. Conclusions: SURP identified personality features linked with risk of developing substance use disorder. The study also provided evidence for significant burden on caregivers and an increased likelihood to develop a psychiatric disorder.
Background: Disorders of consciousness (DoC) disrupt close relationships. This study investigated the experience of a DoC in the family. Methods: Four main themes were identified from semi-structured interviews with nine females and analysed using Interpretative Phenomenological Analysis (IPA): Findings: (1) Loss without a name, (2) Relationship without a title, (3) Symbiotic relating and (4) Frozen futures. Participants’ accounts showed complex losses and relationship transformations that were challenging to cope with. Participants embodied the person and experienced reductions in rehabilitation and social visits as personally abandoning and led to strong advocacy with professionals. The uncertainty created by the DoC meant participants lived in the present moment and struggled to make plans for their future. Conclusions: Psychological support to demonstrate a sensitivity and validation of this unique complex loss, a framework for naming the loss, provision of education about the condition and enhancing coping with a chronic situation are needed.
Background: Globally, many infants and children are diagnosed with illnesses that impose limitations on their well-being and life course trajectory. Children’s care becomes the central focus of family life. Inadequate support for parents is detrimental to their well-being and management of their child’s care and support needs. Methods: The second phase of this evaluation study followed a quasi-experimental crossover design to test a theory-based psychosocial intervention, the Keeping Hope Possible Toolkit. Fifty-nine participants were randomly assigned to one of two sequence groups, with measures of hope, feelings of control, distress, and uncertainty completed pre- and post-intervention, and at a three-month follow-up. Qualitative interviews sought to assess participant experiences with the intervention, along with acceptability and feasibility. Results: Significant influence on parental distress was found, and the qualitative findings reveal benefits of the intervention for parental wellbeing. The intervention effectively offered practical and emotional support to diverse family caregivers. Conclusions: The evidence-informed KHP intervention can be used by healthcare providers to intervene with family caregivers to support their dynamic emotions including hope, need to live in the moment and remember self, and social preferences. In doing so, parents’ critical caregiving activities can be sustained and their child’s health and wellbeing optimized.
Background: Family caregivers of people with dementia represent a physically and psychologically burdened target group, which can benefit from offers of health promotion, but rarely use existing services. This article deals with the motives and conditions that induce this target group to be (not) active in sports. Methods: For this purpose, the perspectives of family caregivers and local sports clubs in Germany are compared to uncover similarities and discrepancies with the aim of developing target group-specific health promotion services. Results: Results were classified into three dimensions for (non-)participation in sports activities. People who participated in sports club programs generally confirmed its positive effects. Among other things, the sports clubs and family caregivers surveyed emphasized the compatibility of the care situation with possible leisure activities as very important components for (non-)participation. Conclusions: The results show that the subjective health attitudes must be taken into account in the design of health promotion offers.
Introduction: Psychiatric rehabilitation promotes recovery in individuals with mental disabilities. Its mission is to engage patients and families or caregivers in a collaborative treatment process. The vision of recovery is more likely to become a reality when patients and families are actively involved in treatment. Numerous factors have converged during the past decades to facilitate development and refinement of evidence-based approaches for strengthening families coping with mental disorders. Objectives: To review current knowledge on the importance of involving families in psychiatric treatment and rehabilitation, addressing effectiveness of family interventions, role of family coping skills in neutralizing stress and vulnerability, and family burden of mental illness. Methods: Non-systematic review of literature through search on PubMed/MEDLINE database for publications up to 2020. Textbooks were consulted. Results: Given the unpredictability of major mental disorders, families assume responsibility for extensive monitoring and supervision of a severely and chronically mentally ill relative. Clinical, social, family and economic benefits are achieved by adding psychosocial family interventions to a comprehensive array of services required by patients. Family interventions are not stand-alone modalities: they are coordinated with pharmacotherapy, illness management, crisis intervention, clinical case management, skills training and supportive services. Family interventions show benefits, such as fewer psychotic/affective episodes of exacerbation or relapse by the patient, reduced hospitalizations and improved family morale and less emotional burden. Conclusions: The new and effective family interventions do not stigmatize families as being ‘sick’ or in need of therapy to ‘straighten them out’. Family interventions are viewed as conferring added therapeutic protection to the patient and relatives.
Background: The provision of continuous care to a dependent person can lead to a lack of self‐care by the caregiver themselves with corresponding low levels of well‐being. This well‐being has been analysed mostly from within the perspective of the hedonic tradition, with the development of personal growth often being overlooked. Objectives: This study aims to increase the understanding of the connection between this type of psychological well‐being and involvement in self‐care activities, and to be a starting point for the determination of categories that may serve in the screening of potential participants in social‐health interventions where it is being promoted. Methods: Taking the hypothesis of a probable positive connection between psychological well‐being and involvement in self‐care, an observational study was carried out on 45 caregivers of relatives with dementia. Results: In those caregivers showing greater dedication to self‐care, a higher score was obtained on the well‐being scales connected to personal significance and positive emotions and experiences. These findings were further reinforced by the identification of other positive connections, the involvement in self‐care and the six dimensions of wellness contemplated by Ryff. It is possible to envisage the existence of a virtuous circle in respect of the caregiver, whereby a greater involvement in self‐care is related to a higher psychological well‐being, which in turn is related to greater self‐care, and so on.
Background: One of the non‐pharmacological methods used to reduce behavioural problems of Alzheimer's patients and the negative emotions accordingly experienced by caregivers consists of interventions performed according to the Progressively Lowered Stress Threshold (PLST) model. Methods: This randomized controlled study aimed to determine the effect of interventions performed according to PLST on the care burden, care satisfaction, and life satisfaction of caregivers of middle and advanced stage Alzheimer's disease patients, and on the neuropsychiatric symptoms and agitation levels of these patients. The research was conducted with a total of 29 caregivers divided into intervention (15) and control (14) groups. Data were collected using an Introductory Information Form, plus the Standardised Mini‐Mental State Examination, Neuropsychiatric Inventory, Cohen‐Mansfield Agitation Inventory, Carer's Assessment of Satisfaction Index, and Life Satisfaction Scale. Three home visits were made to the caregivers by the researchers in the first, second, and twelfth weeks of the intervention. During the home visits, face‐to‐face training was given as necessary to the individual caring for problems identified in the nursing care plan according to PLST. Results: As a result of the PLST training, there was a decrease in the behavioural problems of Alzheimer's patients, along with a decrease in the care burden of the caregivers and an increase in their care satisfaction. When the scale total scores of the individuals in the intervention and control groups were compared, it was found that only caregivers' care satisfaction increased at a statistically significant level (P < 0.05). Conclusion: At the end of the training given according to PLST, it was found that behavioural problems of Alzheimer's patients and the care burden of caregivers had decreased, and the care satisfaction of caregivers increased. It is recommended that Alzheimer's patients and their caregivers be given training and interventions according to PLST.
Background: Carers of patients with borderline personality disorder (BPD) experience high levels of distress. Several studies have been carried out on interventions designed to decrease their burden. However, the evidence from these studies has not been summarized. Objective: The objective of this work is to explore the clinical utility of interventions developed for family members of patients with BPD. Methods: A systematic review was conducted following the PRISMA guidelines (registration number CRD42018107318), including psychological interventions focused on relatives of patients with BPD. The following databases were used: PsycINFO, PubMed, EBSCOhost, and Web of Science. Two independent researchers reviewed the studies to determine whether the eligibility criteria were met. A total of 2,303 abstracts were identified. Results: After duplicates had been removed, 1,746 studies were screened. Finally, 433 full‐text articles were reviewed, yielding 11 studies that satisfied the inclusion criteria. Results show that these interventions with different clinical formats and settings are effective. The quality of the included studies varies, and the empirical support for these programs is still preliminary. Conclusions: The results help to establish a general framework for interventions specifically developed for family members of patients with BPD, but additional efforts should be made to improve the methodological quality of this field of research and more solidly determine the utility of these interventions. Given the paucity of data so far, this information may open up new lines of research to improve the effectiveness of future programs for carers of patients with BPD and help to reduce their burden.
Background: Caregiving for a family member can result in reduced well-being for the caregiver. Internet-delivered cognitive behavioral therapy (ICBT) may be one way to support this population. This is especially the case for caregivers in countries with limited resources, but high demand for psychological services. Objective: In this study we evaluated the effects of a therapist-guided 8-week-long ICBT intervention for informal caregivers. Methods: In total, 63 participants were recruited online and randomized either to the intervention or to the wait-list control group. The main study outcome was the Caregiver Burden Inventory (CBI). Secondary outcomes included measures of caregiver depression, anxiety, stress, and quality of life. Results: Moderate between-group effect sizes were observed for the CBI measure, in favor of the intervention group, with a Cohen d=–0.70 for the intention-to-treat analysis. Analyses of the subscales of the CBI showed significant reductions on the subscales of Development and Physical Health. Moderate reductions were found for depression and anxiety scores as indicated by the Patient Health Questionnaire-9 (PHQ-9) and Generalized Anxiety Disorder-7 (GAD-7) scores. Large between-group effects were observed for reduction in stress and increase in quality of life as indicated by the Perceived Stress Scale-14 (PSS-14), The Brunnsviken Brief Quality of Life Scale (BBQ), and The World Health Organization-Five Well-Being Index (WHO-5). In addition, participants experienced little to no difficulty in using the program and were mostly satisfied with the intervention’s platform and the choice of content. Conclusions: This is the first internet intervention study for informal caregivers in Lithuania. The results suggest that therapist-guided ICBT can be effective in reducing caregiver burden, anxiety, depression, stress, and improving quality of life. Trial Registration: ClinicalTrials.gov NCT04052724; https://clinicaltrials.gov/ct2/show/NCT04052724
Background: The theme of young family caregivers of older relatives is still partially uncovered, although the phenomenon is increasing worldwide. Methods: This Systematic Literature Review discusses methodological and content issues of ten articles covering this topic, in order to contribute to increase the knowledge and provide suggestions for designing effective support services for adolescent young caregivers. To this purpose, the findings of this review are framed within the caregiving stress appraisal model (renamed CSA model) elaborated by Yates’ and collegues, in order to highlight differences between young caregivers and the older ones. Methods Multiple databases including PubMed, Web of Science, Scopus, ProQuest - Psychology Database, CINAHL Complete - EBSCOHost were used to carry out a systematic review of the literature. Additional references were retrieved from experts contacted and research knowledge. The selected articles underwent both methodological appraisal and contents analysis: for every article an appraisal score was calculated and themes and sub-themes were identified. Results: Out of the ten included studies three were mixed methods, six qualitative and one quantitative. Nine reached a high quality methodological score and one medium. Four main themes emerged from the content analysis: aspects of the caregiving relationship; effects of caregiving; coping strategies; recommendations for services, policy and research. Conclusions: Selected studies explored practical features of the relationship between young caregivers and older family members (tasks performed, motivations, coping strategies) and highlighted both positive and negative outcomes on young people’s everyday life condition and future development. Nevertheless, these evidences were often limited to small samples that did not allow to make generalizations. More studies are needed including large samples in order to deepen the different aspects of caregiving and design tailored support services.
Background: Neuropsychiatric symptoms (NPS) have a major impact in persons with dementia (PwD). The interaction between the caregiver and the person with dementia may be related to the emergence of NPS. The concept of expressed emotion (EE) is used to capture this dyadic interaction. Objectives: The aim of the present study is to examine longitudinally the association between EE in caregivers and NPS in PwD living at home. Design: A longitudinal cohort study with 2 years of follow-up. Setting: PwD and their informal caregivers living at home in the south of the Netherlands. Participants: 112 dyads of PwD and their caregivers from the MAAstricht Study of BEhavior in Dementia. Main outcome measures: EE was measured at baseline with the Five-Minute Speech Sample and was used to classify caregivers in a low-EE or high-EE group. Associations between EE and neuropsychiatric subsyndromes (hyperactivity, mood and psychosis) measured with the Neuropsychiatric Inventory (NPI) were analysed over time. Results: Seventy-six (67.9%) caregivers were classified in the low-EE group and 36 (32.1%) in the high-EE group. There was no difference between the EE groups in mean NPI scores over time. In the high-EE group, hyperactivity occurred more frequently than in the low-EE group at baseline (p=0.013) and at the other time points, but the mean difference was not always significant. There were no differences for the mood and psychosis subsyndromes. PwD with caregivers scoring high on the EE subcategory critical comments had an increased risk of institutionalisation (OR 6.07 (95% CI 1.14 to 32.14, p=0.034)) in comparison with caregivers scoring low on critical comments. Conclusions: High EE in informal caregivers is associated with hyperactivity symptoms in PwD. This association is likely to be bidirectional. Future studies investigating this association and possible interventions to reduce EE are needed.
Background: Diagnosis of hematological cancer affects patients and caregivers as a unit. Few studies have focused on the relationship between hematological cancer patients and their caregivers. Objective: To explore (a) the interaction between patients receiving treatment for hematological cancer in a hematology-oncology clinic and their family caregivers and (b) perceived changes in lives of patients receiving treatment for hematological cancer in a hematology-oncology clinic and their family caregivers. Methods: We used a qualitative descriptive design with a dyadic approach. The study sample included 11 patients with hematological cancer and 11 family caregivers selected through purposive sampling. In-depth interviews were conducted using a semistructured interview format. Results: As a result of a content analysis, 3 themes emerged: hidden emotions, companionship,and life changes. Both the patients and the family caregivers described coping by hiding their feelings, thoughts, and needs and reducing communication with each other. Dyadmembers described commitment to each other and an increase in confidence. In addition, the patients and the family caregivers experienced changes in their roles and perspectives during the diagnosis and treatment process. Conclusion: Patients with hematological cancer and family caregivers need nurses' support. Nurses should be prepared to provide patient-caregiver--based interventions. Implication for Practices: It is important that nurses take action to strengthen the relationship between patients and their caregivers, particularly with a focus on carrying out interventions to improve communication between them. Nurses can also strengthen dyads' coping by drawing attention to positive developments in their perspectives and relationships.
Background: Shifts in locations and levels of care and changing demographics have created a high demand for informal family caregivers. The U.S. healthcare system could not sustain the financial or human resources necessary to meet the needs of care recipients who are dying without the assistance of informal family caregivers. End-of-life caregivers pay a price— emotional, social, financial, and physical—throughout the caregiving process. Many factors contribute to the cost of caregiving, such as caregiver distress and burden. Despite the extensive scientific literature on caregiving at the end of life, necessary evidence to inform nursing science in ways that adequately and appropriately support and sustain those healthy informal family caregivers providing end-of-life care remains unknown. No research to date has approached this problem from a linguistic standpoint. Methods: This study used discourse-based analysis to examine a qualitative secondary dataset to understand which aspects of self (caregiver) and other (care recipient) are revealed through caregiver discourse and how a caregiver’s perception of self and the care recipient change over time. Principles of discourse analysis were applied to develop an analytic framework and explore the linguistic cues (i.e., grammar, reference, identity, deixis, stance, indexicality and agency) expressed by a caregiver in their role as caregiver. Findings: Findings demonstrated the usefulness of a discourse-based analytic method as a new approach in the reuse of large qualitative secondary datasets. In addition, linguistic cues were revealed about how a caregiver perceives self and the care recipient over time. Results established an analytic framework that can be applied to a larger sample of this dataset to more deeply and precisely reveal discursive cues within one End-of-Life Caregiving Trajectory (expected-death) and across all three trajectories (expected-death, unexpected-death and mixed-death). Understanding a caregiver’s discursive cues may give clinicians the ability to better identify subtle yet important expressions of caregivers’ perception of self and others in the caregiving role. Conclusions: Further analysis is needed to identify how these linguistic patterns can lead to interventions that support informal family caregivers. Timely and appropriate interventions in times of uncertainty can mitigate negative outcomes for the caregiver and care recipient, resulting in a healthy caregiving workforce.
An introduction is presented in which the editor discusses articles in the issue on topics including delusions, cognitive disturbance, and marked difficulties with social functioning and networks.
Background: Schizophrenia is a debilitating mental illness that has repercussions for the afflicted individual as well as the immediate family. While family caregiving entails enormous burden, it is also acknowledged that the experience may be perceived as being rewarding. Objectives: This study seeks to understand key aspects of caregiving in terms of perceived rewards, the experience of hope, and the social support available to family caregivers. Methods: Standardized instruments to assess these variables were administered to primary caregivers of people with schizophrenia and a comparative group. Results: It was seen that both hope, and perceived social support significantly predicted reward perception in the caregivers.
Background: Amyotrophic lateral sclerosis (ALS) is a fatal neurodegenerative disease that causes progressive autonomy loss and need for care. This does not only affect patients themselves, but also the patients’ informal caregivers (CGs) in their health, personal and professional lives. Objectives: The big efforts of this multi-center study were not only to evaluate the caregivers’ burden and to identify its predictors, but it also should provide a specific understanding of the needs of ALS patients’ CGs and fill the gap of knowledge on their personal and work lives. Methods: Using standardized questionnaires, primary data from patients and their main informal CGs (n = 249) were collected. Patients’ functional status and disease severity were evaluated using the Barthel Index, the revised Amyotrophic Lateral Sclerosis Functional Rating Scale (ALSFRS-R) and the King’s Stages for ALS. The caregivers’ burden was recorded by the Zarit Burden Interview (ZBI). Comorbid anxiety and depression of caregivers were assessed by the Hospital Anxiety and Depression Scale. Additionally, the EuroQol Five Dimension Five Level Scale evaluated their health-related quality of life. Results: The caregivers’ burden was high (mean ZBI = 26/88, 0 = no burden, ≥24 = highly burdened) and correlated with patients’ functional status (rp = −0.555, p < 0.001, n = 242). It was influenced by the CGs’ own mental health issues due to caregiving (+11.36, 95% CI [6.84; 15.87], p < 0.001), patients’ wheelchair dependency (+9.30, 95% CI [5.94; 12.66], p < 0.001) and was interrelated with the CGs’ depression (rp = 0.627, p < 0.001, n = 234), anxiety (rp = 0.550, p < 0.001, n = 234), and poorer physical condition (rp = −0.362, p < 0.001, n = 237). Moreover, female CGs showed symptoms of anxiety more often, which also correlated with the patients’ impairment in daily routine (rs = −0.280, p < 0.001, n = 169). As increasing disease severity, along with decreasing autonomy, was the main predictor of caregiver burden and showed to create relevant (negative) implications on CGs’ lives, patient care and supportive therapies should address this issue. Moreover, in order to preserve the mental and physical health of the CGs, new concepts of care have to focus on both, on not only patients but also their CGs and gender-associated specific issues. Conclusions: As caregiving in ALS also significantly influences the socioeconomic status by restrictions in CGs’ work lives and income, and the main reported needs being lack of psychological support and a high bureaucracy, the situation of CGs needs more attention. Apart from their own multi-disciplinary medical and psychological care, more support in care and patient management issues is required.
Background: Informal caregivers are those who provide care for others without compensation. In the US, 85 % of elderly individuals receive care from an informal caregiver, and this number is expected to increase. Caregivers often experience different types of strain, stemming from physical, emotional, and financial demands. Methods: Guided by intersectionality theory, this study explores the relationships between informal caregiving strains and gender, race, and income, along with various control variables, including age, marital status, education, number of hours spent providing care, and employment status. Data from the 2015 Caregiving in the US survey (N = 1248) were used. Results: Findings indicated male informal caregivers reported more financial strain compared to females. White women reported more emotional strain than women of color, and those with higher incomes reported less financial strain. Gender, race, and income were not significantly related to physical strain among informal caregivers. Conclusions: Implications, limitations, and suggestions for future research are discussed.
Methods: Using the random-effects meta-analysis model, we investigated the effect of informal caregiving on all-cause mortality across 12 longitudinal population-based studies (seven United States; five international: United Kingdom, Northern Ireland [2], Japan, and Australia). Results: Across the studies, the combined effect of informal caregiving on all-cause mortality was 16% lower in favor of caregivers. Subgroup analyses revealed that the relationship between informal caregiving and all-cause mortality was not significant among the U.S. studies, in contrast to the international studies. Also, the mortality advantage of informal caregivers was not evident among those studies in which informal caregiving was operationalized precisely (Activity of Daily [ADL]/Instrumental Activity of Daily Living [IADL] assistance) as opposed to more broadly. Furthermore, studies in which the kinship tie between the informal caregiver and care recipient was unspecified tended to find a mortality advantage in favor of caregivers. Conclusions: When covariates were considered, the results of this meta-analysis provided more support for stress theory than the healthy caregiver hypothesis.
Objectives: Globally, informal caregivers caring for cancer patients meet challenges within their caregiving role, which significantly influence their quality of life. This qualitative systematic review aimed to analyze how cancer caregiving influence the quality of life of informal caregivers and the management strategies of informal caregivers for their role as cancer caregivers. Methods: Following the enhancing transparency in reporting the synthesis of qualitative research (ENTREQ) statement, Wanfang database, the China National Knowledge Infrastructure (CNKI), CINAHL, MEDLINE, PubMed, Cochrane Library, PsycARTICLES and PsycINFO, and grey literature in English and Chinese from 1 May 2009 to 31 December 2019 were searched. Quality of included studies was assessed by the Critical Appraisal Skills Programme (2018) Qualitative Checklist and thematic synthesis was conducted. Results: Of the 8,945 studies identified, 6 studies met the inclusion criteria. One analytical theme relating to the QoL of informal caregivers following cancer caregiving was identified: “challenges of caregiving”. In terms of the management strategies to the role of cancer caregivers, two analytical themes were identified: “self-adjustment” and “seeking for formal and informal support”. Conclusions: Cancer caregiving influences informal caregivers’ QoL significantly and informal caregivers develop diverse coping strategies to deal with the difficulties occurred while balancing the relationship between their own lives and caregiving. However, professional and policy support remain inadequate for informal caregivers that require the need for improvement in terms of health care professionals and policymakers.
Objectives: The aim of this study was to describe the psychological and physical health needs of informal caregivers in a rehabilitation hospital and explore differences related to informal caregiver and care recipient characteristics. Readiness to engage in health promotion and perspectives on mindfulness meditation were assessed. Methods: Informal caregivers (N = 33) to patients receiving inpatient or outpatient treatment completed the Multidimensional Health Profile screening tools. Readiness to change was assessed using the readiness ruler approach. Results: Almost half of participants (45.5%) had a chronic illness and 18.2% reported that it interferes with daily functioning. Low Positive Health Habits were reported by 43% of participants, and Negative Health Habits were reported by 25%. A subgroup (15%–20%) reported both physical and mental health concerns. A majority of participants indicated it was both very important for them to improve their physical and mental health and felt very confident they could do so. Receptivity to mindfulness meditation was high, with 72.7% reporting an interest. Comprehensive screening and counseling interventions to address the physical and mental health of informal caregivers in physical rehabilitation hospital settings are needed, and information gained from screening could be addressed in interventions delivered by systems-oriented rehabilitation counselors. Conclusion: A mindfulness meditation intervention may be a useful strategy for promoting well-being in this population.
Background: Amyotrophic lateral sclerosis (ALS)/motor neuron disease (MND) is a systemic and fatal neurodegenerative condition for which there is currently no cure. Informal caregivers play a vital role in supporting the person with ALS, and it is essential to support their wellbeing. This multi-centre, mixed methods descriptive exploratory study describes the complexity of burden and self-defined difficulties as described by the caregivers themselves. Methods: Quantitative and qualitative data were collected during face-to-face interviews with informal caregivers from centres in the Netherlands, England, and Ireland. Standardised measures assessed burden, quality of life, and psychological distress; furthermore, an open-ended question was asked about difficult aspects of caregiving. Results: Most caregivers were female, spouse/partners, and lived with the person with ALS for whom they provided care. Significant differences between national cohorts were identified for burden, quality of life, and anxiety. Among the difficulties described were the practical issues associated with the caregiver role and emotional factors such as witnessing a patient’s health decline, relationship change, and their own distress. The mixed-methods approach allows for a more nuanced understanding of the burden and difficulties experienced. Conclusion: It is important to generate an evidence base to support the psychosocial wellbeing and brain health of informal caregivers.
Background: While the relation between care involvement of informal caregivers and caregiver burden is well-known, the additional psychosocial burden related to care involvement during the COVID-19 pandemic has not yet been investigated. Methods: A total of 1000 informal caregivers, recruited offline, participated in a cross-sectional online survey from April 21 to May 2, 2020. Questionnaires were used to assess COVID-19-specific changes in the care situation, negative feelings in the care situation, problems with implementation of COVID-19 measures, concerns/excessive demands, loss of support, change in informal caregivers’ own involvement in care and problems with provision, comprehension & practicability of COVID-19 information, and to relate these issues to five indicators of care involvement (i.e., being the main caregiver, high expenditure of time, high level of care, dementia, no professional help). Binomial and multiple regression analyses were applied. Results: Across indicators of care involvement, 25.5–39.7% reported that the care situation rather or greatly worsened during the COVID-19 pandemic, especially for those caring for someone with dementia or those usually relying on professional help. In a multiple regression model, the mean number of involvement indicators met was associated with age (β = .18; CI .10–.25), excessive demands (β = .10, CI .00–.19), problems with implementation of COVID-19 measures (β = .11, CI .04–.19), an increase in caregiving by the informal caregivers themselves (β = .14, CI .03–.24) as well as with no change in the amount of caregiving (β = .18, CI .07–.29) and loss of support (β = −.08, CI −.16–.00). No significant associations with the mean number of involvement indicators met were found for gender, educational level, change in the care situation, negative feelings, and provision, comprehension & practicability of COVID-19 information. Conclusion: Those caregivers who perceived extensive care burden were those who suffered most during the pandemic, calling for structural support by the healthcare system now and in the future. Trial registration This article does not report the results of a health care intervention on human participants.
Introduction: Caring for a significant other during cancer treatment can be demanding. Little is known about the well-being of informal caregivers of patients with colon cancer. This study aims to examine informal caregiver well-being during adjuvant chemotherapy for colon cancer. Material and methods: This exploratory longitudinal, prospective study measured the course of informal caregiver burden (Self-Perceived Pressure of Informal Care), distress (Hospital Anxiety and Depression Scale), health-related quality of life (RAND-36), marital satisfaction (Maudsley Marital Questionnaire), social support (Social Support List – Discrepancies), fatigue (Abbreviated Fatigue Questionnaire), and self-esteem (Caregiver Reaction Assessment) before (T0), during (T1), and after (T2) patients’ treatment. Results: Baseline data of 60 out of 76 eligible dyads (79%) were analyzed. Mean levels of informal caregiver burden and distress improved significantly over time, as did their health-related quality of life and perceived social support. At baseline, 30% and 26.7% of informal caregivers reported moderate-to-high levels of burden and clinically relevant levels of distress, respectively, which changed to 20% and 18.8% at T2. Informal caregiver burden and distress at baseline were the strongest predictors of informal caregiver burden and distress during and following patients’ treatment, respectively. Conclusion: When informal caregivers and patients experience problems before start of adjuvant chemotherapy, problems seem to improve over time. Approximately 20% of informal caregivers remain burdened and distressed after patients’ end of treatment. Paying attention to baseline distress and burden seems indicated, as these were strong predictors of informal caregivers’ well-being during and after treatment.
Background: As the population is ageing, the need for informal caregivers increases, and thus we need to know more about the effects on caregivers. This study aims to determine both cross-sectional and longitudinal associations between perceived limitation of informal caregiving and mental health of caregivers. Methods: This population-based cohort study was based on the Swedish Psykisk hälsa, Arbete och RelaTioner (PART) study, and 9346 individuals aged 18–65 were included. Data were collected through questionnaires, interviews and Swedish registers. Informal care was defined as care given to a family member. Self-reported and diagnosed depression and anxiety were included as outcomes. Covariates included sex, age, social support and socio-economic position. Ordinal logistic regression and Cox regression were performed to determine the associations between caregiving and anxiety or depression. Results: Self-reported depression and anxiety was only increased among those experiencing limitations (adjusted odds ratios [aOR] 2.00, 95% confidence intervals [CI] 1.63–2.47 for depression; aOR 2.07, 95% CI 1.57–2.74 for anxiety) compared to those not giving care, respectively. The adjusted hazard ratio (aHR) were increased for diagnosed depression (aHR 1.97, 95% CI 1.27–3.05) and for diagnosed anxiety (aHR 1.86, 95% CI 1.06–3.25) among those giving care and experiencing limitations, compared to those not giving care. No significant associations were found in caregivers without limitations. Conclusion: Caregivers experiencing limitations showed a significant association with short- and long-term anxiety and depression. This study implies the importance of exploring the degree to which informal caregiving can be provided without adding burden to caregivers.
BACKGROUND: For family caregivers, sudden stroke events and heavy caring works are stressful events. At present, controversies about the factors affecting caregivers' stress response and their correlation with coping styles still exist. OBJECTIVE: To explore the influencing factors and coping styles of mental health stress responses of stroke caregivers and promote caregivers to adopt positive coping styles for diseases and caring works. METHODS: The convenience sampling method is used to select stroke caregivers as the research objects. The general information questionnaires, Relative Stress Scale (RSS), General Self-Efficacy Scale (GSES), Social Support Rate Scale (SSRS), Positive and Negative Affect Schedule (PANAS), and Simplified Coping Style Questionnaire (SCSQ) are utilized for investigation. RESULTS: 205 valid questionnaires are returned. Analysis suggests that the influential factors of mental health stress responses of stroke caregivers include the course of the disease, the impact of the disease on economic conditions, obligation to take care of other family members, understanding of stroke-associated diseases, and whether the patient is at risk. Social support and self-efficacy are negatively correlated with stress responses, while negative coping style is significantly positively correlated with stress responses. CONCLUSIONS: By increasing social support and self-efficacy, medical workers can guide stroke caregivers to take positive coping styles, thereby reducing their mental health stress responses.
Background: There has been a documented increase in the numbers of filial and sandwiched caregivers in the United States. However, past studies have overlooked the impact of work and family overload on caregiver well-being. Methods: This study investigates the moderating influences of the quality and directionality of work and family spillover on the well-being (e.g., positive affect and negative affect, psychological well-being, and global well-being) of 180 filial and sandwiched caregivers from the second wave of the Midlife in the United States Survey. Results: Regression and moderation analyses revealed that sandwiched caregivers with high levels of negative work-to-family spillover exhibited higher negative affect than the comparison groups. Sandwiched caregivers with high levels of negative family-to-work spillover exhibited higher level of negative affect and lower level of self-acceptance than other caregivers. Conclusions: These findings can help create work programs that address spillover between work and home in the effort to promote caregiver well-being.
Background: A child’s cancer affects their entire family and is a source of chronic stress for a sick child, as well as for their parents and siblings. It deprives them of the feeling of security; introduces uncertainty, fear and anxiety; and destabilises their life. It mobilises the family since they have to reconcile the treatment and frequent appointments at the hospital with the hardships of everyday life. The emotional burden they have to deal with is enormous. Recognition of the needs of such a family allows for the implementation of support, psychosocial care and psychoeducation, as well as the provision of reliable information. Patients and Methods: A population survey was conducted between 2015 and 2020. Caregivers of children diagnosed with cancer were invited to participate in the study to assess their problems and needs. Results: All respondents in their legal status were parents of children with cancer. The study included 800 people, where women accounted for 85% and men accounted for 15%. The mean age of the mother was 38.09, SD = 7.25, and the mean age of the father was 41.11, SD = 7.03. The occurrence of problems negatively correlated with both the age of the parents (p < 0.0001) and the level of education (p < 0.0001). Parents who admitted having financial problems more often reported problems of a different kind; moreover, financial problems were more often reported by parents of children who were ill for a longer time (p = 0.01). Conclusions: Parents of children suffering from cancer reported numerous psychological, social and somatic problems. The identification of problems through screening should translate into specific interventions, thus creating support for the families of children with cancer. Promoting coping with difficult emotions and the ability to solve problems when a child is ill has a positive effect on the functioning of the family.
Background: There is a need for more resources to support the cognition and quality of life of people with dementia. The individual cognitive stimulation therapy (iCST) app aims to provide cognitive stimulation and social interaction to people with dementia and carers through interactive touchscreen technology. The iCST app has been developed according to the principles of CST and iCST, which have previously shown to improve the cognition and quality of life of people with dementia and benefit the relationship between the person with dementia and his/her carer. The iCST app has also shown to improve the quality of the carer’s life. Objective: The aim of this study is to evaluate the usability of the iCST app intervention and the feasibility of conducting a full-scale randomized controlled trial (RCT) to assess the clinical effectiveness of the iCST app intervention compared to that of treatment-as-usual for people with mild-to-moderate dementia. Methods: We aim to recruit 60 people with mild-to-moderate dementia and their informal carers as dyads in a multi-center feasibility RCT with a treatment-as-usual control group. Both parties must be able to provide informed consent and participate in the intervention. Dyads will complete a baseline assessment that will include cognition and quality of life measures and they will subsequently be randomized (1:1) to the iCST app intervention in addition to usual care or to usual care only. All participants will be followed up at 5 weeks and at 11 weeks after the baseline assessments. A range of feasibility outcomes will be assessed, including recruitment and retention rates, intervention fidelity and usability, and acceptability of the outcome measures. A sample of the experimental group will be invited to a semistructured posttrial interview to further examine the experience of using the iCST app. Results: This study received funding in May 2015 and obtained ethical approval in March 2018. Data collection began in November 2018 and was completed in March 2020 with a total of 61 dyads recruited. Data analyses are in progress and the final results are expected to be available in the spring of 2021. Conclusions: This study will investigate whether it is feasible to conduct a full-scale RCT to evaluate the clinical effectiveness of the iCST app in comparison to that of usual care alone. In addition, this study will examine the usability of the iCST app. The data will provide information on potential modifications to be made to the intervention, study design, and study process. Trial Registration: ClinicalTrials.gov NCT03282877; https://clinicaltrials.gov/ct2/show/NCT03282877 International Registered Report Identifier (IRRID): DERR1-10.2196/24628
Purpose: We sought to assess the impact of disruptions due to coronavirus disease 2019 (COVID‐19) on caregivers of childhood cancer survivors. Methods: A 13‐question survey containing multiple‐choice, Likert‐type, and free‐text questions on experiences, behaviors, and attitudes during the COVID‐19 outbreak was sent to childhood cancer caregivers and completed between April 13 and May 17, 2020. Ordered logistic regression was used to investigate relationships between demographics, COVID‐related experiences, and caregiver well‐being. Results: Caregivers from 321 unique families completed the survey, including 175 with children under active surveillance/follow‐up care and 146 with children no longer receiving oncology care. Overall, caregivers expressed exceptional resiliency, highlighting commonalities between caring for a child with cancer and adopting COVID‐19 prophylactic measures. However, respondents reported delayed/canceled appointments (50%) and delayed/canceled imaging (19%). Eleven percent of caregivers reported struggling to pay for basic needs, which was associated with greater disruption to daily life, greater feelings of anxiety, poorer sleep, and less access to social support (p < .05). Caregivers who were self‐isolating reported greater feelings of anxiety and poorer sleep (p < .05). Respondents who expressed confidence in the government response to COVID‐19 reported less disruption to their daily life, decreased feelings of depression and anxiety, better sleep, and greater hopefulness (p < .001). Conclusions: Caregivers are experiencing changes to medical care, financial disruptions, and emotional distress due to COVID‐19. To better serve caregivers and medically at‐risk children, clinicians must evaluate financial toxicity and feelings of isolation in families affected by childhood cancer, and work to provide reliable information on how COVID‐19 may differentially impact their children.
Background: People with dementia and their family caregivers may face a great burden through social isolation due to the COVID-19 pandemic, which can be manifested as various behavioral and clinical symptoms. Objective: To investigate the impacts of social isolation due to the COVID-19 pandemic on individuals with dementia and their family caregivers. Methods: Two semi-structured questionnaires were applied via telephone to family caregivers of people diagnosed with dementia in three cities in Argentina, Brazil, and Chile, in order to assess clinical and behavioral changes in people with dementia and in their caregivers. Results: In general, 321 interviews were conducted. A significant decline in memory function has been reported among 53.0%of people with dementia. In addition, 31.2%of individuals with dementia felt sadder and 37.4%had increased anxiety symptoms. These symptoms of anxiety were greater in individuals with mild to moderate dementia, while symptoms of agitation were greater in individuals with severe dementia. Moreover, compulsive-obsessive behavior, hallucinations, increased forgetfulness, altered appetite, and increased difficulty in activities of daily living were reported more frequently among individuals with moderate to severe dementia. Caregivers reported feeling more tired and overwhelmed during this period and these symptoms were also influenced by the severity of dementia. Conclusion: Social isolation during the COVID-19 pandemic triggered a series of negative behavioral repercussions, both for people with dementia and for their family caregivers in these three South American countries.
Background: Geriatric patients in various outpatient department (OPDs) have been found to agonize from elder abuse and neglect (EAN). Such suffering imposes depressive states within individuals, which in turn affects treatment compliance. The objective of this study was to evaluate the impact of sensitization (psychotherapeutic) of family caregivers (FCGs) upon two denture treatment parameters (maintenance and treatment satisfaction) among EAN patients and compare the differences in outcome with non-abused patients. Methods: A survey of completely edentulous subjects (n = 860, aged 41–80 years) provided a sampling frame of 332 EAN patients from which 150 patients (including FCGs) fulfilling the study criteria were distributed (simple random, convenient) into two groups (Group A—control, Group B—test). FCG sensitization for subjects in Group B was performed by a clinical psychologist in 2–4 short (30 min) sessions. Demographic characteristics (frequency) were measured using a self-reported questionnaire, denture maintenance was measured using a denture hygiene index (scores), and treatment satisfaction was analyzed on a 10-point visual analog scale. Relevant data were calculated for means and absolute/relative frequencies. Any difference between two groups was estimated using an unpaired t-test while the level of relationship was determined by Karl Pearson’s test at a p-value of < 0.05. Results: The results showed highest frequency (38.6%) for neglect, with elder neglect (EN) being most common (38.14% alone and 14% in combination). EN was found more if the FCG was a son (52%), in the age group (21–30 years), and with low education and low income (75%). Patients whose FCGs were counselled (Group B) demonstrated low denture plaque scores (mean = 1.38 ± 0.618), while demonstrating comparatively higher scores in six different parameters of treatment satisfaction. Differences between the two groups for both parameters were also found to be statistically significant. Conclusions: Psychotherapeutic counselling in the form of FCG sensitization brings better results of denture maintenance and treatment satisfaction.
Introduction: Belarus is undergoing legislative shifts towards community-based mental health care. Responding effectively to support this process requires an understanding of the experiences and challenges facing families caring for a relative affected by mental illness. Objectives: To identify how caring for a person with severe mental illness impacts on family carers, and what carers identify as their support needs. Methods: Semi-structured interviews were undertaken with 17 caregivers of people affected by severe mental illness (diagnosis of F06.8, F20, F25, F7, and/or F 84) in Belarus between March - June 2019. Results: Care-giving for a family member was usually undertaken on a full time basis with no option for respite. Whilst caring did, in cases, strengthen family solidarity, it also resulted in intensive stress and burnout, financial pressures, and high levels of family tension, exacerbated when the person living with mental illness was perceived as a potential safety risk. High levels of societal stigma meant that care-givers commonly felt unable to discuss their circumstances, travel in public spaces, or participate in community activities. Stigma also deterred carers from seeking professional support. Priorities for support amongst carers included better information, public awareness raising and sensitization, advocacy to support patient integration into social and economic life, peer support and respite for family carers, and an increase in mental health specialists. Conclusions: Caregiving affected family carers on multiple levels with predominantly negative consequences. Priorities identified by carers need to be considered and acted upon if community-based care is to become an effective option.
Objective: Ovarian cancer remains an understudied cancer with poor prognosis, few effective treatments and little understanding of the how individuals and their families face the challenges and uncertainty following diagnosis. This study synthesized the subjective experiences of individuals and their caregivers in the face of the uncertainty produced by the disease. Methods: Qualitative data were obtained from the Ovarian Cancer Australia 2017 Consumer Survey. An inductive thematic analysis was conducted on responses from 219 individuals with ovarian cancer and 78 caregivers. Results: Nine themes were identified from the individual's responses and seven themes from the caregivers. For both groups, the uncertainty created at diagnosis led to a cascade of complex responses. For the individuals, uncertainty gave rise to fears for the future, which were exacerbated by unmet healthcare needs or treatment‐related difficulties. For some individuals, these fears led to disruption to their lives, isolation and emotional distress. For others, helpful coping styles and social support protected them from these negative consequences. For caregivers, the processes were similar, but uncertainty predominantly led to feelings of hopelessness and “survivor guilt.” Conclusions: Our results identified processes that may guide future interventions and research targeting unmet needs and protective factors for individuals with ovarian cancer and their caregivers. Findings also suggest the potential to facilitate effective support between individuals and their caregivers.
Background: Previous studies showed that quarantine for pandemic diseases is associated with several psychological and medical effects. The consequences of quarantine for COVID-19 pandemic in patients with dementia are unknown. We investigated the clinical changes in patients with Alzheimer’s disease and other dementias, and evaluated caregivers’ distress during COVID-19 quarantine. Methods: The study involved 87 Italian Dementia Centers. Patients with Alzheimer’s Disease (AD), Dementia with Lewy Bodies (DLB), Frontotemporal Dementia (FTD), and Vascular Dementia (VD) were eligible for the study. Family caregivers of patients with dementia were interviewed by phone in April 2020, 45 days after quarantine declaration. Main outcomes were patients’ changes in cognitive, behavioral, and motor symptoms. Secondary outcomes were effects on caregivers’ psychological features. Results: 4913 patients (2934 females, 1979 males) fulfilled the inclusion criteria. Caregivers reported a worsening in cognitive functions in 55.1% of patients, mainly in subjects with DLB and AD. Aggravation of behavioral symptoms was observed in 51.9% of patients. In logistic regression analysis, previous physical independence was associated with both cognitive and behavioral worsening (odds ratio 1.85 [95% CI 1.42-2.39], 1.84 [1.43-2.38], respectively). On the contrary, pandemic awareness was a protective factor for the worsening of cognitive and behavioral symptoms (odds ratio 0.74 [0.65-0.85]; and 0.72 [0.63-0.82], respectively). Approximately 25.9% of patients showed the onset of new behavioral symptoms. A worsening in motor function was reported by 36.7% of patients. Finally, caregivers reported a high increase in anxiety, depression, and distress. Conclusions: Our study shows that quarantine for COVID-19 is associated with an acute worsening of clinical symptoms in patients with dementia as well as increase of caregivers’ burden. Our findings emphasize the importance to implement new strategies to mitigate the effects of quarantine in patients with dementia.
Objectives: This study aimed at revealing the caregiving challenges of the caregivers of people with dementia (PwD) during the COVID-19 pandemic when daycare service was stopped as an infection control measure, and discussed ways to help PwD and their family caregivers to maintain their well-being in the era of the pandemic. Methods: Between April and May 2020, a cross-sectional survey was conducted in 152 family caregivers of PwD who were clients of daycare service prior to the pandemic. The survey examined caregivers’ stress and challenges faced during daycare service cessation, their perceived needs for continuation of daycare service, and observed changes in functional status of PwD. Regression analyses were performed to explore the associated factors of caregiving stress and preference for continuation of daycare service. Results: Family caregivers of PwD experienced greater caregiving stress after cessation of daycare service. Infection was their main challenge in caregiving, and their physical and emotional health was adversely affected by the longer time commitment with PwD under the stay-home policy. Older age of caregivers, greater emotional and communication problems of PwD, and more time spent with PwD were associated with greater caregiving stress. More than one-third of the participants preferred the continuation of daycare service during the pandemic. Conclusions: Policy makers should consider the well-being of PwD and their caregivers when planning infection control measures. Daycare service with enhanced infection controlled measures should remain available to PwD during the COVID-19 pandemic.
Background: The COVID-19 pandemic has impacted the entire world in unprecedented ways. However, populations that have had a history of marginalization have experienced a more profound impact. One such group is Latinx families of children with intellectual and developmental disabilities (IDD) in the Unites States. Methods: In this study, we used a mixed methods approach to explore the impact of the pandemic on the mental health and well-being of Latinx caregivers of children with IDD. Results: Specifically, we (1) identified which social determinants of health are correlated with maternal caregivers perceived general health, mental health, and well-being; (2) explored the impact of the pandemic on families’ overall eating and physical activity routines; and (3) identified emergent themes from caregivers’ experiences during the pandemic. Thirty-seven Latinx caregivers participated in three interviews in which several validated instruments were administered. The results indicated that perceived social support, annual family income, food security, and receipt of financial benefits were correlated with fewer depressive symptoms. Annual family income was also significantly correlated with perceived general health. Most caregivers reported that the pandemic had placed a strain on their economic situation; increased their isolation; and disrupted their child’s therapeutic supports, online education, eating routines, and engagement in physical activity. Meanwhile, some caregivers reported positive changes as a result of the pandemic. Conclusions: Implications for future research and practice are discussed.
Background: In December 2019, the severe acute respiratory syndrome coronavirus 2 (SARS-CoV-2), or COVID-19, raised worldwide concern. Since then, the COVID-19 pandemic has negatively influenced health and wellness across the globe and caused nearly three million deaths. This study focuses on informal caregivers of people with dementia, a disease that affects about 50 million older adults worldwide and requires much caregiving support. Objective: Examine the current literature on the impact of COVID-19 on the health and well-being of informal caregivers for people with dementia. Method: This rapid review was conducted across five electronic databases for quantitative and qualitative articles published through March 15, 2021. Results: The 10 studies included in this review reported quantitative descriptive data from across the globe; however, no studies existed from the U.S. or East Asia countries. All of the studies examined the psychological rather than physical impact of COVID-19 and highlighted risk and protective factors in the areas of psychosocial (resilience, neuropsychiatric, and social isolation), sociodemographic (gender and education), and environmental (home confinement, living arrangement, and dementia stage). Conclusion: COVID-19 has had a considerable negative impact on the psychological well-being of informal caregivers of people with dementia, namely causing more depression and anxiety than pre-pandemic.
Background: Little is known about the family experience of caregiving for persons living with dementia (PLWD) at home during the COVID-19 pandemic. Objectives: The purpose of this study was to examine the influence of COVID-19 on concerns of current family caregivers of PLWD. Methods: Study participants were recruited from the parent study, Healthy Patterns Clinical Trial (NCT03682185). Results: Data was collected from 34 caregivers via semi-structured telephone interviews. Over 70% of the study participants reported worrying about spreading COVID-19 to the PLWD, 41% reported they had taken on additional caregiving duties for others in their family since COVID-19, and 62% reported one or more anxiety symptoms. Dementia caregivers who reported anxiety symptoms reported lower scores on functional independence of their care recipients compared to dementia caregivers who did not report anxiety symptoms (p=0.036). Conclusions: Health care professionals should be alert to the concerns expressed by dementia caregivers for their well-being during this unprecedented pandemic.
Background: Informal caregivers represent an important and vulnerable part of the society. They can experience negative psychological symptoms, such as depression and anxiety. Internet-based cognitive behavioural therapy (ICBT) is a promising psychological support option that could be effective in reducing informal caregiver burden as well as improving psychological well-being. Qualitative studies are valuable for gaining insights into participant experiences of using ICBT. Objective: The main aim of this study was to explore informal caregiver experiences and hence acceptability and feasibility of the transdiagnostic ICBT program aimed at reducing informal caregiver burden and increasing the quality of life. Methods: Following a strategic sampling procedure, 23 informal caregivers were recruited from previous randomized controlled trial for informal caregivers in Lithuania. Participants were interviewed over phone, using semi-structured interview questions. Interviews were analysed using a thematic analysis approach. Results: Four themes and a total of 10 sub-themes were generated: I A program as a means of change (Convenience and applicability of the format and materials; Ability to focus on own needs; Opportunity for communication), II Suggestions for the program (Including live support; Tailoring materials and format; Providing with more time and resources), III Driving personal and situational forces (Developing acceptance and adjustment over time; Being proactive and/or receiving support) and Hindering situational factors (Deterioration and unpredictability of the care-receivers health; Lacking external support and opportunities for respite). Conclusions: Most of the informal caregivers were found to be satisfied with the program's format and materials as well as the communication with the therapist via a message function in the program. Some suggestions were made regarding implementation of the live support option. Also, suggestions regarding possibility for tailoring the program's content. Lastly, several personal and situational factors were identified as important in affecting informal caregiver well-being. We conclude that ICBT has potential in reducing informal caregiver burden and improving psychological health. Further research trials are warranted for evaluating both, the effectiveness and the feasibility of the program.
Background: Although cancer and HIV/AIDS are common causes of death in Vietnam, limited data exist on their palliative care needs. As palliative care becomes part of Universal Health Coverage, evidence is needed to scale up appropriate care. Objectives: To elicit from people with cancer or HIV/AIDS in Vietnam, and their caregivers, the specific multidimensional symptoms and concerns that cause serious health-related suffering. Methods: Semistructured, qualitative, in-depth interviews were conducted with stage III or IV cancer patients, people with HIV/AIDS, and their caregivers at three cancer treatment centers and two HIV/AIDS treatment centers in northern, central, and southern Vietnam. Interviews were analyzed using thematic analysis. Results: Sixty people were interviewed (21 cancer patients, 20 people with HIV/AIDS, 19 caregivers). Pain and other physical symptoms severely impacted their daily lives. Psychological distress-including sadness, depression, worry, and a feeling of having no future-was mentioned frequently, and it was exacerbated by disease progression and by social problems such as financial difficulties and, among people with HIV/AIDS, stigma. Caregivers also suffered physically and psychosocially. Spirituality emerged as a source of strength for patients. Findings: highlighted patients' and family caregivers' desire for more information about diagnosis, prognosis, and treatment, a shift toward individual decision-making. Conclusion: The findings demonstrate common, multidimensional, and severe suffering among people living with cancer or HIV/AIDS and their caregivers in Vietnam. These qualitative data should guide development of optimum clinical assessment tools and palliative care services for these populations.
Background: The impact of addiction extends beyond the individual using a substance. Caring for an individual with addiction creates persistent stressful circumstances that cause worry, anger, depression, shame, guilt, anxiety, and behavioral problems within the family unit. The aim of the study: The paper aims to explore the experiences of caring for a relative with a substance use disorder (SUD) and self-care strategies caregivers employ. Methods: The study adopted an exploratory qualitative design. To be included in the study, participants were required to have a relative with a (SUD) disorder and not be actively using the substance themselves. Individual interviews were conducted to gather their experiences, meanings, and how they made sense of caring for a relative with a SUD. Results: Twenty one participants were involved in the study, of which 17 were women, and four were men of which there had a sister, four had a brother, eight had a parent, six had a dependent, and one participant had a grandparent with a SUD. Four themes, whose overarching focus is the pains of living and caring for a family with a SUD, caused the participants and how the participants mitigated these experiences. Conclusion: The stress associated with caring for individuals with a SUD impacts the caregiver’s physical and mental health. Specific care modalities targeting caregivers need to be developed to address the health impact and to support self-care.
Background: The all-consuming role and responsibilities of providing care to an aging parent or spouse create identity disruption and stress. However, this stress may be resolved as family caregivers integrate the role of caregiver into their identity and construct an aspect of their identity around providing care (i.e., caregiver identity). Methods: Rooted in the retrospective heuristic of communicated narrative sense-making theory (CNSM), this paper investigates the identities family caregivers construct through online narratives about their caregiving experiences. Results: Using thematic narrative analysis to analyze a corpus of 40 online narratives, this study yielded four distinct caregiver identities: the prisoner, which is defined by a sense of being trapped by the responsibility of caregiving; the crumbling caregiver, which focuses on extreme exhaustion in providing care; the companionate caregiver, which focuses on the relational aspects of providing care; and the redeemed caregiver, which is defined by growth through difficulty.
This piece will focus on how the burden of treatment can affect not only the person with a condition, but also those who care for them.
Background: Healthcare disparities continue to exist among the Vietnamese American (VA) community and many factors (e.g., fear of social stigma) deter family caregivers of persons with dementia (PWD) from seeking assistance. Purpose: To pilot-test a language-specific and culturally appropriate mindfulness intervention to improve dementia VA family caregiver well-being. Methods: Bilingual, trained research assistants administered a mindfulness exercise (i.e., deep breathing) to family caregivers and provided continuous support and care resources through weekly home visits for a month. Weekly surveys measured changes in emotion, feelings of connectedness to the PWD, and mood (i.e., happiness) before and after the intervention. Results: A total of nine VA family caregivers of PWD participated in this pilot study. Positive affect showed an increasing trend (Mpre = 16.0 (SD = 3.48), Mpost = 17.1 (SD = 3.06)) and negative affect showed a decreasing trend (Mpre = 6.44 (SD = 3.31), Mpost = 5.22 (SD = 0.359)). Happiness showed an increasing trend (Mpre = 4.30 (SD = 0.767), Mpost = 4.44 (SD = 0.873)). Conclusions: These findings suggest that a home-based dementia family caregiver intervention with mindfulness exercises may potentially increase positive affect and decrease negative affect in Vietnamese American family caregivers of PWD. Similar interventions may help reduce caregiver burden in dementia family caregivers of other cultures.
Background: Family caregivers often report having unmet support needs when caring for someone with life-threatening illness. They are at risk for psychological distress, adverse physical symptoms and negatively affected quality of life. Objectives: This study aims to explore associations between family caregivers’ support needs and quality of life when caring for a spouse receiving specialized palliative home care. Methods A descriptive cross-sectional design was used: 114 family caregivers completed the Carer Support Needs Assessment Tool (CSNAT) and the Quality of Life in Life-Threatening Illness – Family caregiver version (QOLLTI-F) and 43 of them also answered one open-ended question on thoughts about their situation. Descriptive statistics, multiple linear regression analyses, and qualitative content analysis, were used for analyses. Results: Higher levels of unmet support needs were significantly associated with poorer quality of life. All CSNAT support domains were significantly associated with one or more quality of life domains in QOLLTI-F, with the exception of the QoL domain related to distress about the patient condition. However, family caregivers described in the open-ended question that their life was disrupted by the patient’s life-threatening illness and its consequences. Family caregivers reported most the need of more support concerning knowing what to expect in the future, which they also described as worries and concerns about what the illness would mean for them and the patient further on. Lowest QoL was reported in relation to the patient’s condition, and the family caregiver’s own physical and emotional health. Conclusion: With a deeper understanding of the complexities of supporting family caregivers in palliative care, healthcare professionals might help to increase family caregivers’ QoL by revealing their problems and concerns. Thus, tailored support is needed.
Background: Little is known about heart failure (HF) caregiver self-care. Methods: This article reports a secondary analysis of data from a cross-sectional, descriptive study involving 530 HF caregivers. A three-step latent class mixture model identified HF caregiver classes at risk for poor self-care and examined the relationship between the identified self-care classes and caregiver burden and depression. Caregivers completed online surveys on self-care, caregiver burden, depression, problem-solving, social support, and family function. Results: Caregivers were 41.39 (±10.38) years old, 78.3% Caucasian, and 50.9% men. Three classes of HF caregivers (24% Low-Risk, 24.9% Moderate-Risk, 51.1% High-Risk) were identified. High-Risk caregivers had the worst self-care and the lowest levels of social support, problem-solving, and family function. Moderate-Risk caregivers were the most experienced and had the best self-care yet had the most comorbidities. High-Risk caregivers reported more caregiver burden and depression. Conclusions: "At-risk" caregivers may benefit from self-care and support programs, but more research is needed.
Background: Persons with moderate-to-severe traumatic brain injury (TBI) face issues with health, wellness, and safety that affect their ability to independently manage their care, even for individuals who are ≥75% independent in activities of daily living. These issues often lead to increased family involvement in managing the person's condition after discharge home. Methods: We explored health, wellness, and safety concerns after discharge home from inpatient rehabilitation from the perspectives of persons with TBI who are ≥75% independent in activities of daily living and their family caregivers. We interviewed 27 persons with TBI and family caregivers and used conventional content analysis to analyse the data. Seven themes related to health, wellness, and safety encompassed participants' experience. Findings: Health themes included: (1) attempting to manage medications and (2) navigating mental health difficulties. Wellness themes included: (1) working to stay physically active, (2) dealing with sleep and sleeplessness, and (3) adjusting to changing social relationships. Safety themes were: (1) addressing mobility challenges and (2) compensating for complications with cognitive functioning. Findings can guide the development of tools, supports, and resources to promote health, wellness, and safety of persons with TBI as they recover after discharge home. Findings on numerous concerns related to health, wellness, and safety suggest the need for implementation or development and testing of tools, supports, and resources to promote health, wellness, and safety of persons with traumatic brain injury as they recover after discharge home. Conclusions: Our findings can be used to educate healthcare providers and increase awareness of the nuanced challenges patients and families face after discharge home. Findings can also be used by providers to educate patients and families on realistic expectations for life after discharge.
Objective: To understand grieves and struggles of family caregivers providing care for bedridden elderly patients affected by chronic degenerative diseases. Methods: This cross-sectional study was developed following the guidelines of the clinical-qualitative method. The sample was composed of 10 female family caregivers of bedridden elderly patients affected by chronic degenerative diseases in a city in the interior of Minas Gerais, Brazil. The sample size was determined by data saturation. The instruments used included semi-structured interviews and a field diary. The audio-recorded interviews were transcribed verbatim and submitted to content analysis. The field diary provided contributions to the organization of categories, conferring a more accurate context. Results: The participants experienced two types of grief, one for the loss of a “healthy family member” and the other for the “announced death” of this person. Additionally, the participants faced two main struggles: overcoming (objective and subjective) fatigue and becoming fully capable of performing their roles. Conclusion: The family caregivers of bedridden elderly patients affected by chronic degenerative diseases experience grieves and struggles that should be taken into account from the beginning of the care process through mental health actions intended to meet their needs.
Purpose: Grandparents are common providers of childcare within the Caribbean region. Yet research on the implications of grandparent caregiving for older adults’ well-being is limited. This study examined gender differences in the relationship between grandparent caregiving and the life satisfaction of older adults in Jamaica. Methods: Using a sample of 1,622 grandparents 60 years and older drawn from the 2012 study “The Health and Social Status of Older Jamaicans,” we estimated binary logistic regression models to examine the association between the frequency of grandparent caregiving and the life satisfaction of grandparents. Findings: Grandmothers were more likely than grandfathers to provide care. We did not find a statistically significant gender difference in the life satisfaction of caregiving grandparents. Yet, gender differences in the patterns of association between grandparent caregiving and life satisfaction were evident. Among grandmothers, both occasional and regular caregiving was associated with higher life satisfaction relative to non-caregivers. Among grandfathers, however, only regular caregiving was positively associated with life satisfaction. Originality: This is the first population-based study within the Caribbean to examine gendered patterns of grandparent caregiving and the association with grandparents’ well-being. The findings of this study suggest that grandparent caregiving is beneficial to the well-being of older Jamaican men and women. This study challenges assumptions of gender norms that typically do not position men to be involved in caregiving roles, and to derive satisfaction from such roles, within Caribbean households. The authors suggest more attention should be given to interventions to encourage men to be actively involved in family caregiving.
Objectives: The current study aimed to identify gender-dependent factors that influence caregiver burden among family caregivers of persons with dementia through secondary data analysis. Methods: We used a nationally representative survey of 379 family caregivers of persons with dementia completed in 2014. We examined factors affecting the burden experience of male and female caregivers, guided by the stress process model, using hierarchical regression. Results: The analytic sample included 159 males (42%) and 220 females (58%). For males, age of care recipient, being an adult child, social support, instrumental activities of daily living performed, and caregiving impact on caregivers' health influenced burden. For females, co-residence, social support, caregivers' current health, and caregiving impact on caregivers' health impacted burden. Conclusions: Understanding gender differences related to caregiving burden is beneficial for developing effective targeted interventions that support the caregiving role and improve the quality of life of caregivers.
Background: The objective of this study was to assess the complex relationship between the multiple determinants of the caregiving process, the caregiver burden, and depression during the COVID-19 pandemic in Serbia. Methods: A cross-sectional study was conducted on a nationally representative sample (n = 798) during the COVID-19 pandemic in Serbia from March to September 2020. A nine-section questionnaire designed for this study included the characteristics of caregivers, characteristics of care and care recipients, COVID-19 related questions, and the following standardized instruments: 12-Item Short-Form Health Survey, Fatigue Severity Scale, Activities of Daily Living Scale and Instrumental Activities of Daily Living Scale, Zarit Caregiver Burden Scale, and Beck Depression Inventory. Path analysis was used for the simultaneous assessment of the direct and indirect relationships of all determinants. Results: More than two thirds (71.9%) of informal caregivers experienced a burden, and more than one quarter (27.1%) had depression symptomatology. Self-rated physical health, need for psychosocial support, and caregiver burden were the main direct predictors of depression. Multiple determinants of the caregiving process had indirect effects on depressive symptomatology via the caregiver burden as a mediating factor. Conclusions: The subjective burden presented a significant risk factor for depressive symptoms in caregivers during the COVID-19 pandemic. The provision of psychosocial support was identified as an important opportunity to reduce depressive risk in informal caregivers.
Background: Deeply divided ideological positions challenge collaboration when engaging youth with mental disorders, caregivers and providers in mental health research. The integrative dynamics (ID) approach can restructure relationships and overcome 'us vs them' thinking. Objective: To assess the extent to which an experience‐based co‐design (EBCD) approach to patient and family engagement in mental health research aligned with ID processes. Methods: A retrospective case study of EBCD data in which transitional‐aged youth (n = 12), caregivers (n = 8) and providers (n = 10) co‐designed prototypes to improve transitions from child to adult services. Transcripts from focus groups and a co‐design event, co‐designed prototypes, the resulting model, evaluation interviews and author reflections were coded deductively based on core ID concepts, while allowing for emergent themes. Analysis was based on pattern matching. Triangulation across data sources, research team, and youth and caregiver reflections enhanced rigour. Findings: The EBCD focus group discussions of touchpoints in experiences aligned with ID processes of acknowledging the past, by revealing the perceived identity mythos of each group, and allowing expression of and working through emotional pain. These ID processes were briefly revisited in the co‐design event, where the focus was on the remaining ID processes: building cross‐cutting connections and reconfiguring relationships. The staged EBCD approach may facilitate ID, by working within one's own perspective prior to all perspectives working together in co‐design. Conclusion: Researchers can augment patient engagement approaches by applying ID principles with staged integration of groups to improve relations in mental health systems, and EBCD shows promise to operationalize this.
Aims: The “Finding a Balance Point” framework was used to explore the caregiving process over time for family caregivers of people with dementia in Taiwan. This study aimed to: (a) identify Taiwanese caregivers’ different balance trajectories; (b) explore predictors of trajectory group membership; and (c) examine associations of different balance trajectories with caregiving outcomes. Design: A correlational longitudinal design was used. Methods: Data were collected from 200 family caregivers’ self‐completed questionnaires and they were followed over 2 years (June 2015–May 2017). Discrete balance trajectories were identified by group‐based trajectory modelling. Predictors of trajectory group membership were identified from potential predictors of caregiving characteristics and caregiving factors using multivariate logistic regression. Associations of trajectory groups with caregiving outcomes (depressive symptoms and health‐related quality of life) were explored using the generalized estimating equation. Results: Balance trajectories best fit a two‐group trajectory model (poor and good). Caregivers with a poor sense of balance between competing needs were more likely to have more depressive symptoms (b = 11.71, 95% CI [9.04, 14.38], p < .001), worse physical health (b = −6.22, 95% CI [−8.71, −3.74], p < .001), and worse mental health (b = −11.1, 95% CI [−13.58, −8.63], p < .001) than caregivers with a good sense of balance. Caregivers experiencing lower role strain (b = −1.45, SE = 0.48, p = .003) or higher predictability (b = 2.83, SE = 0.76, p < .001) were more likely to belong to the good‐balance group. Conclusions: Caregivers with poor balance between competing needs are more likely to have worse caregiving outcomes. Role strain and predictability significantly predicted balance trajectory groups. Family caregivers with lower caregiving task difficulty and/or better knowledge of the care receiver were more likely to be in the good balance trajectory group. Impact: Our findings support the framework, “Finding a Balance Point,” and clarify the family caregiving process for people with dementia. This framework could be used to tailor interventions for home care nurses to improve family caregivers’ caregiving outcomes.
Objective: To explore the attitudes and experiences of family caregivers concerning their involvement in shared decision-making regarding people diagnosed with schizophrenia. Methods: This study used a qualitative descriptive design involving face-to-face semi-structured interviews. Both convenience and purposive sampling were used to recruit family caregivers until no new insights were generated (n = 15). An inductive thematic analysis method was used. Results: Primary results of analysis of the attitudes and experiences included four main themes with nine subthemes generated from the data: (1) feeling obligated; (2) playing functional roles: i) providing social and financial support, ii) acting as a liaison, and iii) overviewing treatment adherence; (3) Experiencing multiple challenges i) limited treatment options, ii) insufficient information at health services iii) traditional acceptance of authoritative advice; and (4) living under pressure: i) feeling exhausted, ii) being socially isolated and iii) worrying about the future. Conclusions: Due to their caregiving responsibilities, family caregivers facilitated shared decision-making in various ways. However, they perceived that their involvement was limited to practical tasks and attributed this to the lack of access and support for engagement, resulting in aggravated caregiving burden. Practice Implications: Family caregivers need to be recognized as partners and core stakeholders, to be involved in shared decision-making and better supported in caregiving. To achieve shared decision-making, decision aids are needed to support family caregivers for caregiving in collaborative care models.
Background: The diagnosis of intellectual disability in children can produce complex grief‐related feelings in their parents. Previous studies have focused on the moment of the diagnosis or the early life of the children, and little research has been conducted on their feelings of grief in adulthood. The objective was to analyse the process of grief/loss in parents of adult offspring with intellectual disability. Method: The intentional sampling included sixteen parents who responded to semi‐structured interviews. A qualitative study was conducted based on grounded theory. Results: Five categories were identified: "Reception of the diagnosis", "Emotional bonds with the child", "Experience of loss and feelings in response to intellectual disability diagnosis", "Recurrent grief" and "Coping strategies". Conclusions: Recurring feelings of loss experienced by parents in relation to their child's diagnosis persist over time. Specialized emotional interventions are needed to help parents to reduce the intensity of their feelings of grief.
Purpose: A strong interpersonal relationship after stroke is important for the prevention of depression in survivors and family caregivers. This study aimed to test the feasibility of quality of relationship intervention for stroke dyads called Hand in Hand (HiH). Methods: Sixteen dyads were randomized into either the HiH group (n = 8) or information, support, and referral (ISR) control group (n = 8). HiH dyads received up to eight sessions, with topics prioritized according to a 17-item screening tool. ISR dyads received up to eight sessions that included information, active listening, and referrals. Feasibility, acceptability, and outcomes data were collected for both groups. Results: The HiH and ISR groups were feasible and acceptable. Caregivers in both groups, as well as survivors in the ISR group, experienced improvements in depressive symptoms and other select outcomes. Conclusions: Findings suggest that HiH is feasible to implement with stroke dyads and that it merits further refinement and testing.
Background: This investigation addressed family member perceptions of preparation for withdrawal of life-sustaining treatment in the intensive care unit. These families are at a high risk for psychosocial and physical sequelae. Methods: The quantitative results of this mixed methods study are reported. A control group received usual care and an educational booklet component of the intervention. The experimental group received the above plus exposure to comfort cart items and additional psychological support. Results: Twenty-eight family members enrolled over a 13-month period. Sixty-one percent (10 intervention, 7 control) completed the follow-up. Fourteen family members (82%) recalled the booklet. Some family members reported moderate to severe depression (12.5%), anxiety (12.5%), and stress (12.6%). Satisfaction with care (83.7%-85.2%) and family member well-being (44.1) were within the norm. Short Form-36 physical component score was higher than the norm, and the mental component score was lower than the norm. Conclusions: This study demonstrated feasibility and acceptability of the interventions and follow-up questionnaires when families make the difficult decision to withdraw treatment. Strategies are suggested to strengthen statistical power.
Objectives: The objective of this review will be to identify the characteristics (eg, type, duration, and provider) of family-oriented interventions in long-term care residential settings. The authors will also identify which outcomes are reported in the literature when implementing family-oriented interventions. Introduction: An array of family-oriented interventions in long-term care residential settings exist. Given the heterogeneity of current literature, mapping characteristics and intended outcomes of family-oriented interventions is an essential step to inform how best to support families of patients in long-term care residential settings. Inclusion criteria: This review will consider studies describing family-oriented interventions for families of elderly patients in long-term care residential settings, with no exclusion based on country, gender, or comorbidities. Interventions that address any family-related issue, such as quality of life, psychological burden, and family involvement in patient care, are eligible for inclusion. Studies will be excluded if the patients are cared for at their own homes or institutionalized care is provided on a temporary basis. Quantitative, qualitative, and mixed method study designs will be considered for inclusion. Methods: A scoping review will be conducted using the JBI methodological approach. Seven databases will be systematically searched: MEDLINE, CINAHL, Scopus, Evidence-Based Medicine Reviews including Cochrane Library, PsycINFO, OpenGrey, and the Grey Literature Report. Citations will be screened against the inclusion criteria by two reviewers independently. Relevant data will be extracted from the included studies, and will be synthesized, summarized, and reported following the Preferred Reporting Items for Systematic reviews and Meta-Analyses extension for Scoping Reviews. Findings will be published in a peer-reviewed journal.
Objective: A new diagnosis of pediatric cancer may disrupt family functioning. The current study aimed to describe changes in family rules and routines during the first year of pediatric cancer treatment, and to explore associations with demographics, illness factors, and caregiver distress. Methods: This exploratory mixed‐methods, cross‐sectional study examined 44 primary caregivers of youth in treatment for a new cancer diagnosis in 2019 and 2020, before the onset of the COVID‐19 pandemic. Caregivers completed validated questionnaires assessing demographic and child illness characteristics, psychosocial distress, and cancer‐related stressors, and participated in a semi‐structured interview about family rules and routines. Results: Caregivers reported changes in bedtime, mealtime, and school routines, relaxed behavioral expectations and rules around screen time, and new rules and routines around treatment, medications, and infection control. Caregivers with elevated levels of psychosocial distress reported more changed routines than caregivers with low levels of psychosocial distress. Caregivers who endorsed more cancer‐related stressors reported more new rules and routines than those who reported fewer cancer‐related stressors. Demographic and illness factors were not significantly associated with the number of changed, new, or stable family rules and routines. Conclusions: Families may relax rules and routines during the first several months of diagnosis, and this may be related to side effects of treatment and limited caregiver capacity. The long‐term impact of changes in family rules and routines during cancer treatment warrants further study given that accommodating parenting strategies have been associated with adverse short‐ and long‐term child health and behavior outcomes.
Background: Caregivers need to be imparted with specialized skills to retain their psychological well-being and to manage the patient with schizophrenia effectively. Aim: This study aims to understand the role of family psychoeducation (FPE) in the management of schizophrenia and the well-being of caregiver. Materials and Methods: The sample included 40 caregivers and patients, 20 each assigned randomly in treatment group (psychoeducation given) and the control group. Pre and post assessment of psychological wellbeing (PWB), symptoms of the patient, and emotional regulation was done through the scales mentioned in the study and analyzed through analysis of variance. Results: Statistically significant improvement in emotional regulation of caregivers and patient (P = 0.05) and improvement of PWB in caregivers (P = 0.01) as well as significant reduction in symptoms of patients (P = 0.01) found in the treatment group. Conclusion: FPE was found to be effective in improving PWB of caregivers and effective management of a patient with schizophrenia.
Introduction: For some Canadian Armed Forces Veterans who are released, the military-to-civilian transition (MCT) process may be complicated by significant mental health problems (e.g., posttraumatic stress disorder, depression, anxiety). Family members (i.e., spouses, adult children, parents) who serve as the primary caregivers for Veterans with mental health problems devote significant energy to seeking and finding social support as they navigate the MCT. Objectives: The primary purposes of this qualitative study were to 1) hear from these family members and learn about the obstacles to and successes in accessing formal and informal social supports during the MCT and 2) understand how accessing such supports was affected by the Veteran's mental health problems. Methods: A sequential, multiple qualitative design was used, involving both in-depth individual interviews and focus groups with English- and French-speaking family members (N =36) living in Eastern, Central, and Western Canada (i.e., individual, n = 27; focus groups, n = 9). Data coding was facilitated through the qualitative data analysis sot ware MAXQDA, and data analysis was conducted using grounded theory strategies. Results: Amid numerous indicators of significant resolve and commitment to health, family members revealed significant issues (e.g., mental health stigma of the Veteran, caregiver burden and burnout) that contributed to notable barriers in accessing both informal (i.e., extended family, friends, online support groups) and formal (i.e., Operational Stress Injury Social Support, Military Family Resource Centres) support systems helpful in navigating the MCT. Discussion: Results are discussed in the context of how the Veteran's mental health compounded barriers for family members who sought to access informal and formal support services that would provide comfort, financial aid, respite, and counsel to the Veteran family in the MCT. Conclusions: Building on the resilience of military-connected families, gaps in the systems of formal and informal care are discussed in the context of how bold and creative changes (e.g., proactive signposting) might facilitate the MCT for Veterans with mental health problems.
Background: Randomised controlled trials suggest that family therapy has a positive effect on the course of depression, schizophrenia and anorexia nervosa. However, it is largely unknown whether a positive link also exists between caregiver involvement and patient outcome in everyday psychiatric hospital care, using information reported directly from patients, i.e. patient-reported experience measures (PREM), and their caregivers. Objective: The objective of this study is to examine whether caregiver-reported involvement is associated with PREM regarding patient improvement and overall satisfaction with care. Methods: Using data from the National Survey of Psychiatric Patient Experiences 2018, we conducted a nationwide cross-sectional study in Danish psychiatric hospitals including patients and their caregivers who had been in contact with the hospital (n = 940 patients, n = 1008 caregivers). A unique patient identifier on the two distinct questionnaires for the patient and their caregiver enabled unambiguous linkage of data. In relation to PREM, five aspects of caregiver involvement were analysed using logistic regression with adjustment for patient age, sex and diagnosis. Results: We consistently find that high caregiver-reported involvement is statistically significantly associated with high patient-reported improvement and overall satisfaction with care with odds ratios (OR) ranging from 1.69 (95% confidence interval (CI) 0.95–2.99) to 4.09 (95% CI 2.48–6.76). This applies to the following aspects of caregiver-reported involvement: support for the patient-caregiver relationship, caregiver information, consideration for caregiver experiences and the involvement of caregivers in decision making. No statistically significant association is observed regarding whether caregivers talk to the staff about their expectations for the hospital contact. Conclusion: This nationwide study implies that caregiver involvement focusing on the patient-caregiver relationship is positively associated with patient improvement and overall satisfaction with care in everyday psychiatric hospital care.
Objective: to verify the difference of mean or median in the scores of family functionality and burden of family caregivers of people with mental disorders. Methods: cross-sectional study carried out in a Psychosocial Care Center with 61 family caregivers. Instruments were used for sociodemographic characterization, care process, Family Apgar Index and Family Burden Interview Schedule. Mean/median difference tests were adopted. Results: women with mental disorders and the presence of children in the home decreased the median of the family Apgar score. Difficulty in the relationship between caregiver/user, nervousness/ tension, physical aggression and agitation of patients increased the global average of subjective burden. Conclusions: nursing interventions to reduce burden and promote family functionality should prioritize caregivers of women with mental disorders, assist them in managing troublesome behaviors and raising awareness of family nucleus to co-responsibility for caring for sick people, especially in families with children who demand daily care.
Background: Survival for hypoplastic left heart syndrome (HLHS) has improved dramatically. Little is known about early family function, quality of life (QOL), or well-being/adjustment for parents of infants with HLHS. Methods: Parent/family outcomes over time, predictors, and differences in 143 mothers and 72 fathers were examined. Results: Parents reported better family function compared with published norms, but 26% experienced family dysfunction. QOL and well-being were significantly lower than adult norms. QOL scores generally declined over time, whereas self-reported well-being improved. Responses from mothers and fathers showed different trends, with mothers having worse scores on most measures and at most time points. Being a single parent was a risk factor for poorer family function, but not for lower individual QOL or well-being. Family characteristics, stress, and coping skills were predictive of outcomes. Parents' psychosocial responses to the challenges of life with infants with HLHS change over time. Conclusions: Individually tailored psychosocial support is needed.
Background: Caregivers of patients with bipolar disorder (BD) undergo a considerable amount of burden. In India, family caregivers are the primary source of support and care for their ill relatives. The burden faced by family members of patients with BD often results in physical and mental health consequences. This may lead to negative interaction patterns such as hostility, criticality, and overinvolvement, termed as expressed emotions (EE). Methods: Here, we report how we addressed the EE in family members, using a single-subject design that involved the family caregivers (n = 2) of two adults who presented with a diagnosis of BD with a current episode of mania. Results: An assessment of family caregivers, using the family questionnaire, revealed high EE. Family focused therapy (FFT) of 12 sessions was delivered over 3–4 weeks on an inpatient basis, with positive outcomes of reductions in EE and family stress and improved psychosocial functioning in patient that were sustained over 9–10 months. Conclusions: FFT can be an important add on psychosocial therapy to reduce EE and stress and to facilitate functioning and communication.
Background and Objectives: The coronavirus disease 2019 (COVID-19) pandemic has negatively affected persons with existing chronic health conditions. The pandemic also has the potential to exacerbate the stresses of family caregiving. We compare family caregivers with noncaregivers on physical, psychosocial, and financial well-being outcomes during the pandemic and determine family caregivers most at risk for adverse outcomes. Research Design and Methods: We conducted a cross-sectional online survey of 576 family caregivers and 2,933 noncaregivers from April to May 2020 in Pittsburgh, PA region with a national supplement. Outcome measures included concurrent anxiety, depression, fatigue, sleep disturbance, social participation, and financial well-being and perceived changes due to COVID-19 (loneliness, financial well-being, food security). We also measured sociodemographic, caregiving contextual variables, and COVID-19-related caregiver stressors (COVID Caregiver Risk Index). Results: Controlling for sociodemographics, family caregivers reported higher anxiety, depression, fatigue, sleep disturbance, lower social participation, lower financial well-being, increased food insecurity (all p <.01), and increased financial worries (p =.01). Caregivers who reported more COVID-19-related caregiver stressors and disruptions reported more adverse outcomes (all p <.01). In addition, caregivers who were female, younger, lower income, providing both personal/medical care, and providing care for cognitive/behavioral/emotional problems reported more adverse outcomes. Discussion and Implications: Challenges of caregiving are exacerbated by the COVID-19 pandemic. Family caregivers reported increased duties, burdens, and resulting adverse health, psychosocial, and financial outcomes. Results were generally consistent with caregiver stress–health process models. Family caregivers should receive increased support during this serious public health crisis.
By analysing the 2016 Japanese Supreme Court case concerning family caregivers’ liability for damages caused by a person with dementia who was killed by a train while wandering, this article suggests how to address similar cases in the future, considering the rights of persons with dementia to live in the community. The Court absolved the deceased’s wife and son from liability and defined four criteria to find a person liable for damages: (a) the caregiver’s living, mental, and physical conditions; (b) the conditions of the caregiver’s involvement with a person with a mental disability; (c) the nature and incidence of the problematic behaviours of the person with a mental disability; and (d) the circumstances surrounding their supervision and care. This was the Supreme Court’s first presentation of the criteria for establishing liability for a ‘Person Equivalent to a Supervisor’. To guarantee the rights of a person with dementia to live in the community, the burden on family caregivers must be reduced, and the range of caregivers broadened to include non-family providers. The Court sought to reduce the caregivers’ burden, and if these criteria are applied appropriately, the human rights of dementia patients and caregivers will be protected.
Background: Mental disorders are highly prevalent, placing an enormous burden on individuals, society and economy. Research shows that family members who provide care to individuals with chronic or disabling mental conditions are themselves at risk. As a response to this problem, the project 'Family Caregiver Support - Strategies and tools to promote the mental and emotional health of caregivers' emerged, funded by Erasmus + Program and carried out by 8 European partners including ESS|P.PORTO. Objectives: To empower family members as caregivers and to give them access to relevant medical information and to psychological support for their own needs. Methods: A Guide and a Resource Pack concerning 9 important mental health disorders were developed. An interactive e-platform and a mobile App were developed to make available these materials. Validation of the products was carried out, in each country, by caregivers and health/social care professionals through online questionnaires. Data were collected and processed in an anonymous manner, and the confidentiality was ensured. Results: In Portugal, 98% of respondents (25 caregivers/citizens interested on subject, and 25 health/social care professionals), consider the accessibility and attractivity of the platform very good or excellent; and more than 90% consider materials very effective for the caregiver's empowerment. Some issues were identified to add to Resource Pack. Conclusions: Data from partners is being processed but there is already strong evidence of the usability and efficacy of the project's outcome, and a strong contribution was done for adult education concerning physical, mental and emotional health promotion of family caregivers.
Objectives: The purpose of this study was to describe the meaning of the suffering experience of Korean ALS family caregivers. Methods: This is a descriptive phenomenological study that included ten participants using convenience sampling with maximum variation in a tertiary hospital in Seoul, South Korea. Colaizzi’s data analysis method was used to inductively determine themes and formulate meanings. Results: The three main themes derived from analysis were: “frustration with seeing a patient suffering”, “burnout at the cost of a life of dedication”, and “desperate need for help”. Conclusions: Caregivers experience high levels of suffering, which can come in various forms depending on the circumstances of the particular patient and family. Especially, distress from seeing a loved one suffering was another aspect of suffering in Korean ALS caregivers, reflecting strong family ties. At the same time, patients are in desperate need of help and support from their families. Thus, it is essential to provide care to lessen the causes of distress and meet the needs of not only patients, but also caregivers through family-centered care to improve overall quality of life for all involved.
Background: Behavioral and psychological symptoms of dementia (BPSD) are associated with increased stress, burden, and depression among family caregivers of people with dementia. STAR-Caregivers Virtual Training and Follow-up (STAR-VTF) is adapted from an evidence-based, in-person program that trains family caregivers to manage BPSD. We used a human-centered design approach to obtain feedback from family caregivers about STAR-VTF. The program will be evaluated using a pragmatic randomized trial. Objective: The objective of the study was to understand the needs of family caregivers for improving BPSD management and the extent to which caregivers perceived that STAR-VTF could address those needs. Methods: Between July and September 2019, we conducted 15 semistructured interviews with family caregivers of people with dementia who receive care at Kaiser Permanente Washington in the Seattle metropolitan area. We identified participants from electronic health records, primarily based on a prescription for antipsychotic medication for the person with dementia (a proxy for caregivers dealing with BPSD). We showed caregivers low-fidelity prototypes of STAR-VTF online self-directed materials and verbally described potential design elements. We obtained caregiver feedback on these elements, focusing on their needs and preferences and perceived barriers to using STAR-VTF. We used a hybrid approach of inductive and deductive coding and aggregated codes to develop themes. Results: The idea of a virtual training program for learning to manage BPSD appealed to caregivers. They said health care providers did not provide adequate education in the early disease stages about the personality and behavior symptoms that can affect people with dementia. Caregivers found it unexpected and frustrating when the person with dementia began experiencing BPSD, symptoms they felt unprepared to manage. Accordingly, caregivers expressed a strong desire for the health care organization to offer programs such as STAR-VTF much sooner. Caregivers had already put considerable effort into problem solving challenging behaviors. They anticipated deriving less value from STAR-VTF at that point. Nonetheless, many were interested in the virtual aspect of the training due to the convenience of receiving help from home and the perception that help from a virtual program would be timelier than traditional service modalities (eg, face to face). Given caregivers’ limited time, they suggested dividing the STAR-VTF content into chunks to review as time permitted. Caregivers were interested in having a STAR-VTF provider for additional support in managing challenging behaviors. Caregivers reported a preference for having the same coach for the program duration. Conclusions: Caregivers we interviewed would likely accept a virtual training program such as STAR-VTF to obtain information about BPSD and receive help managing it. Family caregivers anticipated deriving more value if STAR-VTF was offered earlier in the disease course.
Background: In low-income settings with limited social protection supports, by necessity, families are a key resource for care and support. Paradoxically, the quality of family care for people living with Severe Mental Illness (PLSMI) has been linked to support for recovery, hospital overstay and preventable hospital readmissions. This study explored the care experiences of family members of PLSMI with patients at the national mental hospital in Kampala, Uganda, a low income country. This study was undertaken to inform the development of YouBelongHome (YBH), a community mental health intervention implemented by YouBelong Uganda (YBU), a registered NGO in Uganda. Methods: Qualitative data was analysed from 10 focus groups with carers of ready to discharge patients on convalescent wards in Butabika National Referral Mental Hospital (BNRMH), Kampala. This is a subset of data from a mixed methods baseline study for YouBelong Uganda, undertaken in 2017 to explore hospital readmissions and community supports for PLSMI from the Wakiso and Kampala districts, Uganda. Results: Three interrelated themes emerge in the qualitative analysis: a range of direct, practical care provided by the caregiver of the PLSMI, emotional family dynamics, and the social and cultural context of care. The family care giving role is multidimensional, challenging, and changing. It includes protection of the PLSMI from harm and abuse, in the context of stigma and discrimination, and challenging behaviours that may result from poor access to and use of evidence-based medicines. There is reliance on traditional healers and faith healers reflecting alternative belief systems and health seeking behaviour rather than medicalised care. Transport to attend health facilities impedes access to help outside the family care system. Underpinning these experiences is the impact of low economic resources. Conclusions: Family support can be a key resource and an active agent in mental health recovery for PLSMI in Uganda. Implementing practical family-oriented mental health interventions necessitates a culturally aware practice. This should be based in understandings of dynamic family relationships, cultural understanding of severe mental illness that places it in a spiritual context, different family forms, caregiving practices and challenges as well as community attitudes. In the Ugandan context, limited (mental) health system infrastructure and access to medications and service access impediments, such as economic and transport barriers, accentuate these complexities.
Background: The challenges of living with and taking care of a patient with schizophrenia can lead to positive changes depending on the experiences and reactions of family caregivers. Such changes may directly affect the family performance and the patient’s recovery stage. Aims: Present study aimed to explain the positive experiences reported by family caregivers of patients with schizophrenia. Methods: The present study is a qualitative study of content analysis. Data were collected using semi-structured and in-depth interviews with 15 family caregivers of patients with schizophrenia referring to one of the psychiatric hospitals in Zahedan, Southeast part of Iran. Purposive sampling method was applied and data analysis was conducted using conventional content analysis proposed by Graneheim and Lundman. Results: Data analysis created a theme entitled “family achievements in struggling with schizophrenia”. This theme included four categories including Developing positive personality traits in family members, Strengthening family ties, developing insight into the life, and social mobility. Conclusions: The results provided insights that the experience of taking care of patients with schizophrenia led to positive consequences for family caregivers. Thus, it is recommended that psychiatrists or consultants help families rely on positive experiences and share these experiences with families with a newly-suffered patient.
Background: Previous research suggests caregivers of individuals with eating disorders (EDs) may attempt to reduce family strain by engaging in accommodation and enabling behaviors to avoid conflict or alleviate stress of the affected individual. Moreover, families often reorganize life around the ED, reinforcing ED behaviors and exacerbating family dysfunction and caregiver distress. However, limited research has examined how accommodation relates to caregivers' distress, family functioning, and treatment outcomes. The current study provides an initial evaluation of these associations among treatment-seeking individuals with EDs and their family members. Method: Forty family members of individuals receiving cognitive behavioral therapy for EDs in a residential treatment soetting completed the Accommodation and Enabling Scale for Eating Disorders (AESED) and measures of anxiety (Patient-Reported Outcomes Measurement Information System anxiety scale) and family functioning (Family Assessment Device; FAD) at the time of their family member's treatment admission. Results: Eighteen patients completed the Eating Disorder Examination-Questionnaire (EDE-Q) at admission and discharge. AESED scores were positively associated with family member anxiety, FAD roles, FAD behavioral control, and higher patient EDE-Q global scores at discharge. Conclusions: Findings provide preliminary evidence that greater family accommodation not only relates to poorer family functioning, but uniquely relates to worse ED treatment outcome.
Objectives: to identify the factors related to the use of religious coping in informal caregivers. Methods: integrative literature review carried out through a search in the databases LILACS, PubMed, Scopus, Web of Science, and CINAHL, in addition to the Virtual Health Library and SciELO. The study selected primary articles in English, Portuguese, and Spanish, using the descriptors Coping Behavior, Caregivers, Spirituality, and Religion, which were combined with each other and with synonyms. There was no time limit for the publications. Results: nine articles were selected. Factors related to the use of religious coping in informal caregivers included: having an advanced age, experiencing traumatic situations, being under overload, being a spouse or mother, caring for hospitalized individuals, or for those with chronic diseases and high degrees of dependence. Conclusions: the factors related to the use of religious coping are multifaceted and involve physical, psychological, psychosocial, and situational aspects.
Aims: The current study aimed to investigate the impact of carer-related modifiable factors (i.e., knowledge about dementia, psychological inflexibility, self-compassion and hours of support from other family members) on quality of life (QoL) among family carers. Methods: A multiple regression analysis was conducted with QoL as a dependent variable. All factors were entered into the model simultaneously as independent variables. Ninety-one family carers with a mean age of 69.5 years old were assessed. Results: Participants were primarily female family members looking after a person with severe Alzheimer's disease. The model's R2 was 24%. The results demonstrated that psychological inflexibility was the only significant independent variable predicting QoL (β = −0.46, p = 0.00, 95% CI: −0.71 to −0.20), and higher psychological inflexibility was associated with worse QoL. Conclusions: These findings suggest that targeting carer's psychological inflexibility through psychological interventions such as Acceptance and Commitment Therapy may be particularly important in promoting QoL among family carers of people with dementia.
Background: Evaluation of factors influencing scales of burden, coping mechanisms, and quality of life (QOL) in caregivers of hemodialysis (HD) patients may lead to the revision of interventions aimed at the betterment of QOL of caregivers of HD patients. In this study, we investigated the influence of demographic, social, and clinical variables on burden, coping mechanisms, and QOL in caregivers of HD patients. Methods: In this prospective study, 150 caregivers of HD patients were recruited. Assessment of burden, coping strategies, and QOL were made by the Zarit Burden Interview, Revised Ways of Coping, and Short Form-36 QOL. The role of age, gender, and social and clinical variables on these constructs was investigated using multivariate analysis of variance. Results: The mean age was 43.86 ± 1.11 years. Males outnumbered females. Most were Hindu, married, primary school educated, unemployed, spouses, caring the patients, and suffering from chronic diseases for <5 years. In multivariate analysis of variance, effect of age on physical functioning (PF), general health (GH), and physical component summary (PCS) score (P < 0.01); gender on burden, distancing, seeking social support, role limitation due to emotional problem, and pain (P < 0.05); role limitations due to physical health, energy/fatigue (EF), emotional well-being, PCS, and mental component summary (MCS) score (P < 0.01); religion on PF (P < 0.05); marital status on burden and GH (P < 0.05); PF and PCS (P < 0.01); relationship of caregiver with the patient on PCS (P < 0.05); EF and MCS (P < 0.01); and presence of chronic diseases on GH and social functioning (P < 0.01) were observed. Conclusion: The role of demographic, social, and clinical variables should be taken into consideration while initiating therapies for reducing the burden and improving the QOL of caregivers.
Background: With an aging global population and changes in family structure, there will be a need for increased formal and informal caregivers for family members with alzheimer's disease or other related dementias. Caregivers experience exhaustion, mental health issues, and competing demands; deciding to admit family members with dementia into long‐term care compounds the stress. The article reports on factors that influence caregivers' decisions regarding institutionalizing their family members with dementia. Methods: Eighteen articles were included in this integrative review. Findings: Influential decision‐making factors were: caregiver characteristics, care recipient characteristics, complexity of care, caregiver and family relationships, experiences with healthcare providers, financial challenges, and long‐term care facility selection. Addressing these factors can provide a layer of support to caregivers and their families during the decision‐making process.
Background: Delivery of community-based end-of-life care for patients and family members has been recognized as an important public health care approach. Despite differences in different healthcare settings and the significance of a person-centered approach, little research has investigated facilitators of community-based end-of-life care from the perspective of service recipients. In particular, there has been limited exploration of strategies to ensure positive outcomes at an operational level. Aim: To explore factors facilitating positive end-of-life care provision in community-based settings and how these are achieved in practice, from the perspectives of patients and family caregivers. Design: A qualitative cross-sectional descriptive study was undertaken through semi-structured interviews with patients and family caregivers subjected to thematic analysis. Setting/participants: Ten patients and 16 family caregivers were recruited from an end-of-life community care program provided by four non-governmental organizations in Hong Kong. Results: Seven core themes were identified: positive emotions about the relationship, positive appraisals of the relationship, care through inquiring about recipients’ circumstances, instrumentality of care (i.e. information, coaching on care, practical help, psychological support, multiple activities), comprehensiveness of care (i.e. diversity, post-death care, family-level wellbeing), structure of care (i.e. timely follow-up, well-developed system), and qualities of workers. Conclusions: Improvement in service quality might be achieved through alternating the perceptions or emotional reactions of care recipients toward care providers and increased use of sensitive inquiry. Comprehensive care and positive outcomes might be facilitated by addressing the dualities of care by providing diverse choices in pre-death and post-death care.
Introduction: An association can be found between patient with psychosis and perpetrating acts of violence. So, the caregiving role can impact negatively on psychosis carer psychological health and wellbeing. Objectives: The aim of this study was to identify the factors associated with post-traumatic stress disorder (PTSD) in family caregivers of psychotic patients following exposure to aggression. Methods: This cross-sectional study was carried out involving 95 family caregivers of psychotic patients followed in psychiatry. Data were gathered from caregivers about their experiences in providing care. Sociodemographic and clinical data of patients were collected from medical records.We used the perceptions of prevalence of aggression scale (POPAS) to measure the frequency and severity of aggression directed at the respondent in the past and the Impact of Event Scale-Revised (IES-R) to evaluate PTSD. Results: The caregivers were male in 51.6% and with low educational level in 46.3% of cases. A rate of 75.8% of caregivers reported experiencing moderate to severe levels of aggression. More than a half of caregivers (54.7%) reported potentially significant levels of PTSD. Decreased contact with patient (p=0.01), male gender (p=0.00), older age (p=0.00), living far from patient (p=0.00), parent relationship of caregivers (p=0.00), diagnosis of schizophrenia or schizoaffective disorder (p=0.00) and poor adherence to treatment (p=0.00) in affected relatives were associated with the presence of PTSD following exposure to moderate to severe aggression. Conclusions: These findings highlight the need for interventions to promote family psychoeducation and to provide psychosocial support for caregivers of patients in order to prevent the traumatic impact of violence on them.
Background: Providing care for patients with dementia can negatively influence the physical health and health behaviours of family caregivers. A better understanding of the factors associated with health check-up and cancer screening participation is vital for developing effective interventions. Thus, this study aimed to identify factors associated with health check-up and cancer screening participation among family caregivers of patients with dementia. Methods: This was a cross-sectional study that analysed the data of 2,414 family caregivers of patients with dementia collected by the Korea Community Health Survey in 2017. A binomial logistic regression analysis was performed to identify demographic, socioeconomic, and health status factors associated with health check-up and cancer screening participation among family caregivers of patients with dementia. Results: Health check-up and cancer screening rates among family caregivers of patients with dementia were 68.7% and 61.4%, respectively, which were significantly lower than the rates for individuals who were not caregivers of patients with dementia. Those with lower education levels had lower odds ratios (OR) for both health check-up (OR: 0.60) and cancer screening (OR: 0.59) participation. In addition, symptoms of depression were associated with lower participation (health check-up OR: 0.67; cancer screening OR: 0.65). Conclusions: More targeted disease prevention and management strategies must be developed for family caregivers of patients with dementia, particularly those with depressive symptoms and lower education levels.
Background: Informal caregivers of persons with dementia (PWD) are often associated with negative health outcomes. Self-efficacy in dementia caregiving has been reported to have protective effects on caregiver’s health. This study aims to examine the factors associated with the domains of caregiving self-efficacy among informal caregivers in Singapore, a country with a rapidly aging population and a 10% prevalence of dementia among older adults. Methods: Two hundred eighty-two informal caregivers were recruited and data including participant’s caregiving self-efficacy, sociodemographic information, perceived social support, positive aspects of caregiving, knowledge of dementia, as well as behavioral and memory problems of care recipients were collected. A confirmatory factor analysis (CFA) was performed for the 3-factor model of the Revised Scale for Caregiving Self-Efficacy (RSCSE), and multiple linear regressions were conducted using the RSCSE subscales as dependent variables. Results: Our CFA found that the RSCSE 3-factor model proposed by the original scale developer was an acceptable fit among informal caregivers in Singapore. Having established that the 3-factor model of the RSCSE was compatible among our sample, a series of multiple regressions were conducted using each of the factors as a dependent variable. Regressions revealed several factors that were significantly associated with caregiving self-efficacy. Importantly, outlook on life was positively associated to all 3 domains of the RSCSE, while social support was positively associated with self-efficacy in obtaining respite and controlling upsetting thoughts. Conclusion: The 3-factor model of the RSCSE was found to be an appropriate fit for our sample. Findings from this study elucidated important novel insights into the factors that influences caregiving self-efficacy amongst informal caregivers in Singapore. Crucially, caregivers’ outlook on life and social support should be improved in order to enhance their caregiving self-efficacy.
Objective: This study aims to investigate the burden of family caregivers of patients with schizophrenia, and its influencing factors. Methods: A total of 105 patients with schizophrenia and their caregivers were investigated using the positive and negative symptom scale (PANSS) and family burden scale of disease (FBS). Results: There was a strong correlation between the patient's recovery and family burden, especially between positive and negative symptoms and family financial burden, family daily activities, family recreational activities, and family relationship. Conclusion: There is a strong correlation between the patient's recovery and family burden, and this is especially correlated to family economic burden, family daily activities, family recreational activities, and family relationship. Medical staff should pay attention to the psychological characteristics of patients and fully understand and avoid the adverse effects of family burden on the rehabilitation of patients. There is a strong correlation between the patient's recovery and family burden, and this is especially correlated to family economic burden, family daily activities, family recreational activities and family relationship. Medical staff should pay attention to the psychological characteristics of patients, and fully understand and avoid the adverse effects of family burden on the rehabilitation of patients.
Introduction: Family caregivers of psychotic patients are exposed to violence and stress. However, associated psychological outcomes are poorly characterized in this population. Objectives: The aim of this study was to clarify the relationship between violence directed towards caregivers of patients with psychosis and developing post-traumatic stress disorder (PTSD). Methods: Participants were family caregivers of psychotic patients (n=95). They completed a questionnaire assessing sociodemographic characteristics. Sociodemographic and clinical data of patients were collected from medical records. We used the perceptions of prevalence of aggression scale (POPAS) to measure the frequency and severity of aggression directed at the respondent in the past and the Impact of Event Scale-Revised (IES-R) to evaluate PTSD. Results: A rate of 75.8% of caregivers reported experiencing moderate to severe levels of aggression. Decreased contact with patient (p=0.00), male gender (p=0.00), older age (p=0.00) and parent relationship (p=0.01) of caregivers, diagnosis of schizophrenia or schizoaffective disorder (p=0,00) and poor adherence to treatment (p=0,00) in affected relatives were associated with experiences of moderate–severe aggression. More than a half of caregivers (54.7%) reported potentially significant levels of PTSD which correlated with the level of aggression (p=0.00). Conclusions: Our findings suggest that a large proportion of family caregivers of patient-initiated violence in psychosis reported experiencing a great distress and a high level of PTSD symptomatology. So, more attention should be paid to the support needs of caregivers who are faced with potentially life threatening aggressive behaviour by psychotic family members.
Background: Preserving patient dignity is a fundamental value in palliative care and is associated with an increased sense of meaning at end of life. The empiric Dignity Model, developed by Chochinov et al. (2002), identifies physical and psychosocial issues impacting dignity and provides guidance for dignity conserving care. Aim: This study's objectives are to explore the generalizability of the empiric Dignity Model to Chinese Canadians an immigrant population influenced by both Western and Asian values. The study will explore how dignity is culturally mediated. Design: Template analysis using NVivo was used to assess for themes and to explore new themes in focus group interviews. Participants: Three focus groups of thirty-one first generation Chinese Canadians were conducted in the community setting, in the metropolitan area of Greater Vancouver. Results: The three thematic categories of the Dignity Model were broadly supported. Themes of Family connectedness and the Confucian virtue of filial piety (duty that children have towards their parents), were found to be strongly relevant for Chinese Canadians. Subjects' acculturation within Canada led to an evolution of perception of dignity as new ideas are accepted or rejected and blended with pre-existing values. Conclusion: To the author's knowledge this is the first study on the Dignity Model done in a Chinese Canadian population. The conceptualization of dignity for first generation Chinese Canadians is influenced by both Western and Asian culture. This study highlights the unique constructs of dignity for Chinese Canadians and areas to enhance dignity preserving care in a cross-cultural context.
Background: When family caregivers are involved in patient care, both patients and caregivers experience better clinical outcomes. However, caregivers experience communication difficulties as they navigate a complex health care system and interact with health care providers. Research indicates that caregivers experience a communication burden that can result in topic avoidance and distress; however, little is known about how burden stemming from communication difficulties with health care providers relates to caregiving outcomes. Objectives: To investigate how family caregiver communication difficulties with health care providers influence caregiver quality of life and anxiety. Methods: Data were collected in a cross-sectional online survey of 220 caregivers with communication difficulties resulting from caregiver avoidance of caregiving-related topics, inadequate reading and question-asking health literacy, and low communication self-efficacy. Results: Caregiver outcomes were not affected by reading health literacy level but did differ based on question-asking health literacy level. Adequate question-asking health literacy was associated with lower anxiety and a higher quality of life. Caregivers who avoided discussing caregiving topics reported higher anxiety and lower quality of life and caregivers with increased communication self-efficacy reported a higher quality of life. Conclusion: Involvement of family caregivers in care is likely to require tailored approaches that address caregiver communication and health literacy skills. Findings from this study suggest that hospice and palliative care providers should identify and provide support for caregiver communication difficulties in order to positively influence caregiver quality of life and anxiety.
Methods: A parallel mixed-methods study on 20 patient–caregiver dyads in an Asian population was conducted to explore the differential perceptions and barriers to ACP in dementia. We recruited English-speaking patients with mild dementia and their caregivers. A trained ACP facilitator conducted ACP counseling. Patient–caregiver dyads completed pre–post surveys and participated in post-counseling qualitative interviews. We used mixed-methods analysis to corroborate the quantitative and qualitative data. Differential perceptions of ACP were reported among dyads, with caregivers less inclined for further ACP discussions. Post-ACP counseling, caregivers were significantly more likely to acknowledge barriers to ACP discussions than patients (57.9% versus 10.5%, p = 0.005). Results: Thematic analysis of the interview transcripts revealed four themes around barriers to ACP: patient-related factors (transference of decision making, poor cognition and lack of understanding, and dis-inclination to plan for the future), caregiver-related factors (perceived negative impact on the patient, caregiver discomfort, and confidence in congruent decision making), socio-cultural factors (taboos, superstitions, and religious beliefs), and the inappropriate timing of discussions. Conclusions: In a collectivist Asian culture, socio-cultural factors pose important barriers, and a family-centric approach to initiation of ACP may be the first step towards engagement in the ACP process. For ACP in dementia to be effective for patients and caregivers, these discussions should be culturally tailored and address patient, caregiver, socio-cultural, and timing barriers.
Objectives: Carer’s self-initiated management strategies of behavioural and psychological symptoms of dementia (BPSD) can inform intervention development. These strategies are affected by cultural values. Little is known about non-Western dementia carers’ BPSD management strategies. This study aimed to explore self-initiated strategies in managing BPSD adopted by Chinese carers. Design: Qualitative study using thematic framework method. Setting: Community setting in Hong Kong. Participants: 16 dementia carers with purposive sampling to include carers of different relationships to the people living with dementia (PLwD), education level and living arrangement. Results: Six overarching themes emerged from the data: (1) maintaining personhood in PLwD, (2) responding positively to BPSD, (3) explanation and bargaining, (4) responding negatively to BPSD, (5) controlling upsetting thoughts, and (6) getting respite care. Chinese carers treasured warm and supportive family relationships. They identified and minimised triggers to alleviate BPSD. Some carers struggled with care tasks and reacted with confrontation and avoidance. Changing attitudes and getting social and emotional support were described to manage carers’ distress. Few self-care strategies including getting respite care were reported.ConclusionsCarers’ self-initiated strategies largely aligned with existing theoretical frameworks in BPSD management, such as person-centred approach, and echoed Asian culture, which advocates filial piety and supportive family relationships. While these cultural values encourage the engagement of people living with dementia in the normal process of family life, they may also prevent carers from taking time away from care. Conclusions: Interventions could support carers by enhancing their knowledge and skills in managing BPSD, providing social and emotional support, and providing guidance in self-care. Future cross-cultural research could explore factors contributing to how carers manage BPSD and how interventions could be culturally adapted to facilitate carers to apply learnt skills in daily practice and hence benefit the people living with dementia and carer population.
Objective: This study examines explanatory models (EMs) of stroke and its complications among people living with stroke, and their caregivers, in two urban poor communities in Accra (Ga Mashie) and Korle Bu Teaching Hospital (KBTH), Accra. Methods: Twenty-two stroke survivors and 29 caregivers were recruited from 2 urban poor communities in Accra and KBTH. Qualitative data were obtained using semi-structured interviews that lasted between 45 minutes and 2 hours. The interviews were audiotaped, transcribed and analysed thematically, informed by the concept of EMs of illness. Results: Participants referred to stroke as a sudden event and they expressed different emotional responses after the stroke onset. Stroke survivors and their caregivers attributed stroke with poor lifestyle practices, high blood pressure, unhealthy diet and dietary practices, supernatural causes, stress, family history, other chronic diseases, and delay in treatment of symptoms. While the stroke survivors associated stroke complications with physical disability and stigmatisation, the caregivers associated these with physical disability, behavioural and psychological changes, cognitive disability and death. These associations were mostly influenced by the biomedical model of stroke. Conclusion: The biomedical model of stroke is important for developing interventions that will be accepted by the stroke survivors and the caregivers. Nevertheless, sociocultural explanations of stroke need to be taken into consideration during delivery of medical information to the participants. This study proposes an integrated biopsychosociocultural approach for stroke intervention among the study participants.
Background: Assessing patient and caregiver experiences with care is central to improving care quality. The authors assessed variations in the experiences of advanced cancer patients and their caregivers with physician communication and care coordination by patient and caregiver factors. Methods: The authors surveyed 600 patients with a stage IV solid malignancy and 346 caregivers every 3 months for more than 2 years. Patients entered the cohort any time during their stage IV trajectory. The analytic sample was restricted to patient‐caregiver dyads (n = 299). Each survey assessed patients' experiences with physician communication and care coordination; patients' symptom burden; caregivers' quality of life; and patients' and caregivers' anxiety, financial difficulties, and perceptions of treatment goals. An actor‐partner interdependence framework was used for analysis. Results: Patients reported better physician communication (average marginal effect [AME], 6.04; 95% confidence interval [CI], 3.82 to 8.26) and care coordination (AME, 8.96; 95% CI, 6.94 to 10.97) than their caregivers. Patients reported worse care coordination when they (AME, –0.56; 95% CI, –1.07 to –0.05) or their caregivers (AME, –0.58; 95% CI, –0.97 to –0.19) were more anxious. Caregivers reported worse care coordination when they were anxious (AME, –1.62; 95% CI, –2.02 to –1.23) and experienced financial difficulties (AME, –2.31; 95% CI, –3.77 to –0.86). Correct understanding of the treatment goal (vs being uncertain) was associated with caregivers reporting physician communication as better (AME, 3.67; 95% CI, 0.49 to 6.86) but with patients reporting it as worse (AME, –3.29; 95% CI, –6.45 to –0.14). Conclusions: Patients' and caregivers' reports of physician communication and care coordination vary with aspects of their own and each other's well‐being and with their perceptions of treatment goals. These findings may have implications for improving patients' and caregivers' reported experiences with health care practitioners. Reports from patients with advanced cancer and their caregivers about physician communication and care coordination vary with aspects of their own and each other's well‐being and with their perceptions of treatment goals. Addressing the well‐being of both members of the dyad and reducing caregivers' uncertainty regarding treatment goals may improve reported experiences with health care providers.
Background: Family caregivers play an important role in supporting patients at the end of life. Although providing care for palliative care patients can be inherently stressful, it is possible for family caregivers to experience both positive experiences and stress simultaneously. Understanding these positive experiences can be helpful to aid counterbalancing the negative aspect of caregiving. Methods: Therefore, we conducted a qualitative study using face-to-face interviews with semi-structured questions to explore the experiences of well-being of palliative care family caregivers from a positive perspective. The entire sample consisted of 18 family members caring for cancer patients and 2 family members caring for patients with motor neuron disease. The interviews were transcribed verbatim and thematically analyzed with qualitative research software NVIVO. Findings: The themes generated from the analysis are: (1) Acceptance, (2) Gratitude, (3) Hope, (4) Happiness and (5) Support. The 5 themes provide 6 constructs for independent intervention. Conclusions: Understanding these themes that promote caregiver well-being can be a guide for us to take care of our family caregivers.
Background: Informal carers play an important role in the care of patients with mental illness. Little is known of the relationship experience of the patient and their informal carer (caring dyad) as the context for the intersection between physical and mental health. Aim: This study aimed to explore the impact of comorbid cardiometabolic risk (CMR), metabolic syndrome (MetS) and related diseases and severe mental illness (SMI) on the caring dyad. Design: Between October 2018 and March 2020, we conducted 11 in-depth semi-structured interviews across 6 adult caring dyads, interviewing each individual separately. Setting: Dyads were recruited within the United Kingdom; informal carers were nominated by the patient as a person who provided a significant amount of support. Variable Being Studied: Participants were asked about the impacts of illness and caring on daily life. Data Analysis: Data were analysed at the dyad level using thematic analysis, comparing and contrasting responses from each individual. Results: Themes were identified: enhanced closeness, dissonance and balance within the caring dyad. Discussion and Conclusions: This study uses a particular population of patients with comorbid CMR factors, MetS and related diseases and SMI and their informal carers to explore the relevance and utility of caring dyads as an analytical framework to inform practice and policy. Future interventions should consider factors impacting on dyadic relationships to formulate effective and sustainable dyadic care and treatment to improve health outcomes for both patients with SMI and their informal carers. Patient/Public Involvement: In this study, patients and informal carers were participants. Topic guides were piloted with a patient and informal carer.
Background: Internationally, many children and adults with intellectual disabilities are continually being supported by their family members to live within their family home. However, as a consequence of the ageing process some family members can struggle to continue to care because of their failing physical and/or mental ill‐health. This has resulted in a shift in the parameters of the relationship for some adults with intellectual disabilities with their formerly dependent role evolving into a caregiving one. This had become known as "reciprocity" or "mutual support." Limited information exists about these "hidden carers" and what services are available to support them. Aim: This article explored the lived experiences of nine adults with intellectual disabilities who provided emotional and tangible support to an ageing family member. Method: A qualitative methodology was employed using semi‐structured interviews. Nine participants with mild‐to‐moderate intellectual disabilities were interviewed within one region of the United Kingdom. The interviews were analyzed using thematic analysis. Findings: Five themes emerged within these narrative accounts: natural transition to caring; the health needs of the ageing family member; support; impact of caregiving and future planning. Discussion: The needs of these unknown hidden carers, and also ageing family members, are immediate and urgent. Policy makers, commissioners and service providers need to examine the type of "in‐house" support provided to these new carers if they are to continue living within their family home with their ageing family member, who will also need additional support. Neglecting both cohorts will lead to greater costs to services in the longer term and seriously threaten the quality of life of people with intellectual disabilities and their family carers.
Introduction: In the literature, service users and informal caregivers have been critical towards psychiatric inpatient care. However, little is known about their fears related to hospital care. Objectives: We describe service users’ and informal caregivers’ experiences of fear in psychiatric hospital settings. Methods: The data were collected from seven mental health associations located in six Finnish cities. Focus group interviews (f=8) were conducted (2015–2016) with service users (n=20) and informal caregivers (n=15), and were guided to focus on violence and challenging situations in psychiatric care. In a secondary analysis, experiences of fear were extracted from the transcriptions and analyzed using inductive content analysis. Results: Both groups’ experiences of fear focused on themes related to staff, treatment and fellow patients. Additionally, service users had experiences of fear related to the hospital environment. Fears related to staff involved intimidating personnel using force or acting in threatening ways. Participants also described staff seemingly being afraid of patients and care givers. Three types of fears related to treatment were described: fear of not being admitted to hospital even if needed, fear of being admitted to hospital, and fear of coercive methods used in care. Fear of fellow patients involved being afraid of aggressive, unpredictable behaviors, which could cause, e.g., a lack of sleep at night for service users. Fears related to the environment itself were also discussed. Conclusions: Being hospitalized can be a difficult experience for service users and informal caregivers. These results can help psychiatric healthcare staff acknowledge areas in care that may potentially cause feelings of fear.
Background: Visitor restrictions caused challenges for family members when their loved ones had coronavirus disease (COVID-19) and were ventilated. Limited studies have reported on family members' experiences and support needs. Aim: To explore the experiences and support needs of family members of ventilated COVID-19 patients in the intensive care unit (ICU). Design: Exploratory, qualitative design, using in-depth individual telephone interviews, and analyzed using thematic analysis. Setting/Participants: Ten family members of adult COVID-19 patients in the ICU. Result: Seven key themes represented family members' experiences: (a) reactions to the COVID-19 diagnosis, (b) COVID-19 as a destabilizing force on the family unit, (c) COVID-19's effects on bereavement outcomes, (d) desperately seeking information, (e) family member needs, (f) conflicting feelings about video calls, and (g) appreciation of care. Family members' feelings about the patient's diagnosis and how the virus was contracted exacerbated their stress and anxiety. They struggled to feel informed about care that they could not witness and had difficulty understanding information. Family members reported that video calls were unhelpful. While these experiences made them question the quality of care, they expressed their appreciation of the frontline healthcare providers taking care of their loved ones. Conclusion: The stress and uncertainty of family members of critically ill patients with COVID-19 were influenced by their inability to feel connected to the patient and informed about care. Healthcare providers should assess each individual family's burden and preferences, and this should include establishing structured, timely, and consistent communication regarding patient care during the pandemic including early referral to palliative care.
Background: There is a wealth of literature exploring the experiences of family caregivers of people with severe mental illness (SMI) in western countries, however, this topic has been neglected in the Middle East, despite families being the main source of caregiving in this context. The purpose of this review was to conduct a systematic review and qualitative meta-synthesis to explore the experiences of family caregivers living in countries in the Middle East caring for a relative with severe mental illness. Methods: A systematic review and meta-synthesis were conducted, to comprehensively gain a thorough and detailed overview of what is known about family caregivers’ experiences from published qualitative research in the Middle East geographical area from inception to May 2021. The review protocol was pre-registered with PROSPERO (Ref: CRD42020165519). Results: The review identified twelve qualitative studies that explored caregivers’ experiences of caring for relatives with SMI in Middle East countries. Family caregivers’ experiences were captured under seven overarching themes. The participants across all studies reported negative consequences of providing care, increased burden and emotional distress. Many experienced issues with family/marital relationships and stigmatizing attitudes and behaviours from their communities. Caregivers expressed the need for increased support which was perceived to have a critical role in improving family caregivers’ experiences. Conclusions: The meta-synthesis revealed many challenges and issues that affect caregivers of people with SMI in the Middle East. Family caregivers experienced distress and burden, and reported significant impact on their psychological well-being. Their experiences highlight the urgent need to provide more support for family caregivers in Middle East countries.
Background: Family caregivers of patients with COVID-19 face many challenges that affect their physical and mental health. Aim: The aim of the present study was to explore experiences of family caregivers of patients with COVID-19. Methods: This phenomenological study was performed based on 13 family caregivers who had experience in home caring for patients with COVID-19. Data were collected through purposive sampling with in-depth semi-structured interviews. The Colaizzi's 7-step method was used to determine themes. The MAXQDA10 software was used to manage qualitative data analysis. Results: Thirteen family caregivers participated. Five main themes describe family caregivers' experiences of caring for patients with COVID-19: nature of the disease; unmet needs; unpleasant physical, psychological, and social experiences; care facilitators and positive experiences. Conclusion: Information and financial support for COVID-19 should be provided to family caregivers. Also, community members should embrace patients and family caregivers and reinforce the positive experiences of caregivers.
Background: Social stigma is the most common and challenging burden of care on the family of people with Borderline Personality Disorder (BPD) In Iran, despite the cultural and social influences, this issue has been less studied. Therefore, present study was conducted to determine the lived experiences of caregivers of patients with BPD of social stigma. Materials and Methods: This qualitative study was performed at Ibn Sina hospital in Mashhad, Iran from 2017 to 2019. Participants were selected by purposive and snowball sampling method. Data were collected through semi-structured interviews. Data saturation was achieved after 16 interviews. Finally, the data were analyzed by the method proposed by Diekelmann (1989). Results: In data analysis, one main theme and two sub-themes emerged. The main themes include Black shadow. Two sub-themes consisted of society dagger and secrecy. The sub-theme of society dagger included the two common meanings (inner turmoil in response to the stigma of others and weakening of family status among relatives and acquaintances). The sub-theme of secrecy comprised of the three common meanings (concealment of disease, hide hospitalization, and seclusion). Conclusions: An understanding of the experience of family stigma can lead to the development of supportive strategies to manage this problem among caregivers of patients with BPD. Nurses can support caregivers by offering them opportunities to discuss how stigma is disrupting their caregiving roles. They can also support the caregivers in negotiating the experienced social and emotional distress and when necessary, refer them to the other members of healthcare teams.
Objective: The objective of the review was to synthesize research studies that reported on the experiences and needs of families with a relative in an adult intensive care unit. Introduction: Having a relative in an intensive care unit has been reported to be a time of turmoil, stress, and disruption to the lives of family members. Primary research studies suggest such a crisis or even a planned intensive care unit admission can have not only emotional, physical, and psychological impact, but can also affect family member roles and function. A deeper understanding of the overall experience may assist intensive care unit staff to address specific family needs. Inclusion criteria: This review included qualitative studies of any design that described and explored the experiences and needs of family members with a relative admitted to an adult intensive care unit. Methods: The methods for the review followed the JBI meta-aggregation approach for synthesizing qualitative data. MEDLINE (EBSCO), CINAHL (EBSCO), PsycINFO (EBSCO), Embase (Embase.com) and Web of Science Core Collection (Clarivate Analytics) databases were searched for published studies. ProQuest Dissertations and Theses database (Ovid) was searched for unpublished studies. Studies published from 2010 to November 2019 in the English language were selected for possible inclusion in the review. Results: From 7208 citations, 20 studies were agreed upon for inclusion in the review. From these studies, 112 findings were extracted and synthesized into 12 categories. Four synthesized findings were compiled by aggregating the categories. Broadly, these synthesized findings related to: psychosocial health, proximity, information needs, and the intensive care unit environment. Conclusions: Being a relative of a patient in an intensive care unit is a complex, emotional, and individual experience that can have physical, psychological, and emotional impact. The synthesized findings from this review can be used to support family-centered care practices in adult intensive care units, particularly in regard to information provision, visiting practices, and supportive care. Systematic review registration number: PROSPERO CRD42016053300
Introduction: At the end of life, patients with advanced cancer and their informal caregivers may confront multiple existential concerns. Despite the strong potential to alleviate existential distress through psychosocial interventions, existential distress and its impact on healthcare outcomes have not yet been studied systematically. We aim to investigate the frequency, longitudinal trajectory and predictive impact of existential distress on end-of-life outcomes. We further aim to determine patients’ and caregivers’ specific need for and utilisation of psychosocial support for existential distress. Methods: This longitudinal cohort study will consecutively recruit 500 patients with advanced cancer and 500 caregivers from oncological outpatient and inpatient clinics. Participants will complete self-report questionnaires (sociodemographic and disease-related characteristics, existential distress, end-of-life outcomes, resources and support needs) at five points of assessment (at baseline and after 3, 6, 9 and 12 months). At baseline and 6-month follow-up, we will conduct structured diagnostic interviews to assess mental disorders. Statistical analyses will include descriptive statistics to determine the prevalence of existential distress, mental disorders and end-of-life outcomes; multiple linear and logistic regression analyses to calculate the predictive impact of existential distress on end-of-life outcomes; and growth mixture models to analyse longitudinal trajectories of existential distress. Discussion: This study will provide comprehensive knowledge about patients’ and caregivers’ existential concerns. The longitudinal empirical data will allow for conclusions concerning the frequency and course of existential distress throughout 1 year. This important extension of existing cross-sectional research will contribute to further develop targeted psychosocial interventions. Profiles of existential distress may be applied by clinicians from multiple professions and help to address existential concerns effectively. Ethics and dissemination: The study was approved by the institutional research ethics committee (reference number LPEK-0177). Results will be presented at scientific conferences and published in peer-reviewed journals. Other forms of dissemination will include sharing results on the psychometric properties of the structured demoralisation interview with international research groups and communication with healthcare professionals providing psychosocial treatment for patients and caregivers. Following scientific standards, our progress will be regularly updated on ClinicalTrials.gov.Trial registration numberNCT04600206.
Background: The present study aimed to assess dementia caregivers’ reports of the prevalence and correlates of forgone care regarding visits to a general practitioner (GP) and to a specialist during the COVID-19 lockdown in Israel, using Andersen’s Behavioral Model of Healthcare Utilization. Methods: A cross-sectional study using an online survey was conducted with 73 Israeli family caregivers of persons with dementia residing in the community (81% Jews, 86% female, mean age = 54). Results: Overall, one out of two participants reported having to delay seeking needed help from a GP or a specialist for themselves, as well as for their relatives with dementia, during the COVID-19 lockdown period. Among the predisposing factor, education was associated with caregivers’ reports regarding forgone care for themselves as well as for their loved ones. Living with the care-receiver and income level were the enabling factors associated with forgone care for caregivers. Finally, feelings of burden were associated with caregivers’ forgone care and feelings of loneliness and perceptions of the care-receiver’s cognitive functioning were associated with care-receivers’ forgone care. Conclusions: Our findings show that it is essential that this population receive appropriate practical and emotional support at times of distress and crisis to enable them to continue with their caregiving role.
Background: Stroke is increasing in Africa and consequences such as limitations in the performance of activities in everyday life persist a long time. A family member might need to care for and assist the person who has had a stroke. The life situation of these caregivers thereby changes, which could lead to increased workload and new responsibilities in caring for which they lack but request knowledge. During the F@ce rehabilitation program, the caregivers received counseling, which is uncommon in the African context. The aim of the study was twofold; (1) to investigate the perceived caregiver burden and life satisfaction and, (2) to explore and describe the life situation for caregivers to persons that have had a stroke and received the mobile phone supported rehabilitation F@ce in urban areas in Uganda. Method: A mixed method design was used. Twelve caregivers took part in a semi-structured interview regarding their everyday life situation and responded to questionnaires on caregiver burden and life satisfaction. Latent qualitative content analysis was used to analyse the interviews. Results: Five categories were identified in the caregivers’ experiences of their life situation: Feels obligated but is just a natural commitment; a tightly scheduled everyday life; being the supporting relative; the caregivers´ approach as rehabilitators; and being supported by the rehabilitation intervention. The caregivers rated relatively high on the Caregiver Burden Scale and two thirds of the sample rated their satisfaction with life as a whole as dissatisfying. Further ratings on the Life Satisfaction checklist revealed that the financial, vocational, leisure and family situations were dissatisfying. Conclusions: Even if it was viewed as a natural commitment to be a caregiver when a family member had had a stroke, the life situation changed substantially for those who took on the caregiving role. Caregiving responsibilities were challenging as well as a heavy workload and a strained financial situation as many were giving up on jobs. The participants felt burdened and rated a low life satisfaction. The F@ce intervention was, however, expressed as valued and involved support and advice in their caregiving situation as well as information on stroke which relieved stress among them.
Background: Obesity is a major health problem worldwide. Today, bariatric surgery is considered as the last option and most effective treatment for severe obesity (BMI ≥40 kg/m2 or BMI ≥35 kg/m2 with metabolic conditions). Aims: We aimed to evaluate the medium-term effect (>36 months) of bariatric surgery and assess postbariatric nutritional and lifestyle management among Lebanese patients who underwent bariatric surgeries in Jbeil and Keserwan hospitals. Methods: This study is a quantitative case-control study. The case group includes a couple of patients who have undergone sleeve or bypass surgery 6 months ago and above, along with the main family caregivers. The control group constitutes a couple of obese patients with BMI ≥30 kg/m2 who did not proceed to any surgical intervention with their main caregivers. The final samples consisted of 53 cases and caregivers and 50 controls and caregivers. The assessment was made by an online questionnaire. Results: Compared to obese patients, bariatric patients were less likely to have high energy intake (54% versus 34%, P value 0.012). Moreover, 35.8% of the caregivers of bariatric patients had a low physical activity level compared to those of the control group who had a lower level (70%). In addition, cases’ main caregivers (75.5%) had much higher quality of life compared to the cases (56.6%), and also, higher quality of life was seen among the case’s main caregivers (75%) compared to the controls (72%). Conclusion: In Jbeil and Keserwan regions of Lebanon, there is a lack of postbariatric nutritional and lifestyle management leading to less desirable outcomes in the medium to long term. A set of recommendations are developed based on this study.
Introduction: Raising a child with neurodevelopmental disorder is very challenging. Furthermore COVID-19 pandemic can increase stress levels especially among people that suffer from mental health disorders. On of the high risks group are children with neurodevelopmental disorders. Studies show that these difficult, challenging times have had a negative impact on most families, which have a child with neurodevelopmental disorders. Objectives: Evaluation of depression symptoms among caregivers of children that take therapy in the National Center for Children Rehabilitation and Treatment (NCCRT) during COVID-19 pandemic. Methods: The study was conducted during a two-month period March-April 2020. The sample involved 110 individuals, relatives, of children that were taking educative and rehabilitation therapy in NCCRT during last year, ambulatory or inpatients. Data were collected by clinical records and phone interviews with children’s caregiver. Instrument we used were: Demographic inventory and Hamilton Anxiety Rating Scale for anxiety symptom evaluation. All data were statistically analyzed through excel. Results: Most of individual interviewed, whom are responsible for children wellbeing were their parents, 69% of them. 56% of individuals were among 31-45 years old and 92% of them were women. Depression symptoms were slightly present. We noticed that depressive symptomatology was a bit worse in caregivers in urban areas compared with ones in rural areas. Conclusions: It is necessary supporting with special attention caregivers whom have depressive symptoms. Yet has to be evaluated the connection, if it’s present, between parents with depressive symptoms and children progress, for ones that are being supported with development therapy.
Background: The Family Connections™ (FC) program is a 12‐week support and skill‐training program for caregivers of youth with mental health challenges. The intervention was originally developed with a focus on borderline personality disorder (BPD). It is important to understand the experiences of caregivers in such interventions, as well as its applicability beyond BPD, for the purposes of evaluation and ongoing program improvement. Objective: To explore and analyse the experiences of caregivers of youth with diverse mental health challenges and who participated in FC. Design: Semi‐structured interviews with thirteen FC‐participating caregivers of youth with mental health challenges. Results: Thematic analysis uncovered three major themes regarding caregivers' experience with FC: (a) FC increased the caregivers' ability to manage their youth's mental health challenges; (b) participating in FC impacted their intra‐ and interpersonal spheres; and (c) improvements to the program were proposed. Following participation in FC, caregivers felt they learned a new approach to understanding themselves, their youth and mental health, and were better able to manage their youth's mental health challenges. Discussion and conclusion: FC is a promising intervention for caregivers of youth with mental health challenges, beyond the traditional BPD focus. The intervention has the potential to provide broad‐based benefits for caregivers and should be considered for implementation and scale‐up across youth‐ and caregiver‐serving organizations. Potential areas of intervention flexibility and improvement are discussed. Patient/public contribution: Caregivers were involved in the program development and facilitation of FC. A person with lived experience was involved with the analysis.
Introduction: Caregivers of youth with mental health (MH) challenges are often faced with complex problems in relation to caring for their youth. Family Connections™ (FC) is a 12‐week skills training program for families of individuals with MH challenges, developed originally for Borderline Personality Disorder. Research is needed to examine the effectiveness of FC for caregivers of youth with diverse MH challenges. Objective: To examine the effectiveness of FC for caregivers of youth with MH challenges. Methods: A total of 94 caregivers of youth with MH challenges participated in FC, across three sites in Ontario, Canada. Assessments occurred at baseline, 6 weeks, 12 weeks and follow‐up. Primary outcomes include the Burden Assessment Scale and The Stress Index for Parents of Adolescents. Secondary outcomes included the caregiver's report of child behaviour, affect, mastery, coping and grief. Linear mixed model analyses were conducted, where time and the time × site interaction were defined as the fixed effects. Results: Statistically significant improvements over time were observed across outcome measures, including caregiver burden, grief, coping, and other measures. The time × site interaction was only significant for burden (P = .005). Conclusion: This study demonstrates the effectiveness of FC for caregivers of youth with MH challenges. Future research should focus on differences across geographical sites and facilitation models. Patient or public contribution: Caregivers were involved in the facilitation of FC. A person with lived experience was involved in analysing the data, reporting the results, and drafting the manuscript.
Introduction: Many family carers, particularly those caring for people with dementia, report significant personal and social challenges associated with caring. The aim of this article is to identify the range of challenges experienced by family carers of people with dementia and to ascertain their preferences for various supports and services that address those challenges. Method: Three modified nominal group technique (NGT) focus groups were conducted with family carers of people with dementia. The NGT groups were conducted with 17 participants in two stages, focusing separately on personal and social domains. Family carers identified challenges and individually ranked preferences for both existing and new services and supports. Data analysis consisted of qualitative content analysis and summative scoring of individual rankings. Findings: Family carers identified the following personal-level challenges: needing a break, social isolation and relationship changes. Family carers’ combined preferences for personal-level supports and services to overcome these challenges were day care, family care support groups, short-term respite, long-break respite and social activities. Social challenges referenced by family carers included finances, rights and entitlements and stigma and awareness. Preferences for supports and services to address these social challenges were non–means-tested carer’s allowance, legal recognition, carer’s support grant, monthly wage and community awareness programmes. Conclusion: Participants ranked day care and non–means-tested carer’s allowance as their top priorities under personal and social headings. Increased government investment in these two areas would not only help to maintain family carers’ contributions to community-based care in dementia but would also facilitate social inclusion, social connectedness and economic sustainability.
Efforts to engage young adults with substance use disorders in treatment often focus on the individual and do not consider the role that the family can play in the recovery process. In summarizing the proceedings of a longitudinal meeting on substance use among young adults, this special article outlines three key principles concerning the engagement of broader family units in substance use treatment: (1) care should involve family members (biological, extended, or chosen); (2) these family members should receive counseling on evidence-based approaches that can enhance their loved one's engagement in care; and (3) family members should receive counseling on evidence-based strategies that can improve their own health. For each principle, we provide an explanation of our guidance to practitioners, supportive evidence, and additional practice considerations.
Background: Despite the joy of parenting, the burden of daily caregiving for children with autism spectrum disorders (ASD) can be overwhelming and constant. Parents can expect to provide enduring care for their children with ASD. Given that the majority of individuals with autism spectrum disorders (ASD) remain in their family homes well into adulthood, often the need for assistance with activities of daily living (ADLs) is placed on parents. Providing ongoing support to adult children who have difficulty with completing ADLs can increase parental caregiving demands. Therefore, the purpose of this study was to examine the relationship between the ability of adults with ASD to perform ADLs with parental perceptions of caregiver burden. Methods: Quantitative analysis of cross-sectional multi-state data gathered electronically using Qualtrics from 320 aging parents of adults with ASD was conducted. Regression models were fit to examine the association of ADL challenges with total caregiver burden and its four domains (emotional, financial, time dependence, and developmental). Results: Parental perceptions of caregiver burden decreased, particularly time dependence and developmental burden, when adult children were less dependent in ADLs, even after adjusting for parental health and behavioral challenges. Conclusions: Findings support the need for family-centered interventions to improve the capacity of adults with ASD to perform ADLs independently.
Background: Religion and culture affect the meaning and practicalities of caring for families with mental illness in Malaysia. Such care also differs according to social background, family values and support, commitment, availability, practicality and the needs of the care recipient. Methods: This qualitative study explores 14 Malay caregivers of the older adults with mental health problems in Kelantan, Malaysia. A semi-structured interview was translated and transcribed and subjected to thematic analysis using NVivo software. Findings: The findings show that cultural values and religion shaped the meaning of care as provided by the caregivers. The nature of the relationship is also important in determining the best person in the family to take over the caregiving role.
Background: As family caregivers of patients undergoing hematopoietic cell transplantation have multifaceted caregiving responsibilities (such as medical, household, financial) of long duration, they also have multiple physical, social, psychological, and informational needs. Objective: This study explored the prevalence of electronic health record patient portal use by family caregivers for managing both their own and their hematopoietic cell transplantation care recipient’s health, as well as potential factors associated with portal use. Methods: An electronic caregiver health survey, first developed via cognitive interviewing methods of hematopoietic cell transplantation caregivers, was distributed nationally (in the United States) by patient advocacy organizations to family caregivers of hematopoietic cell transplantation patients. It was used to assess self-reported caregiver demographics, caregiving characteristics, depression and anxiety with the Patient Health Questionnaire–4, coping with the Brief COPE, and caregiver portal use to manage care recipient’s and their own health. Results: We found that 77% of respondents (720/937) accessed electronic health record patient portals for their care recipients, themselves, or both. Multivariate models indicated use of care recipient electronic health record portals by caregivers was more likely with young, White, married, low-income caregivers caring for a parent, residing with the care recipient, and experiencing more caregiver depression. Caregiver use of their own electronic health record portal was more likely with young, White, high-income caregivers caring for a parent and experiencing chronic medical conditions of their own. Partially due to multicollinearity, anxiety and coping did not contribute independently to this model. Conclusions: Findings from the survey could open avenues for future research into caregiver use of technology for informational support or intervention, including wearables and mobile health. International Registered Report Identifier (IRRID): RR2-10.2196/4918
Background: Vascular strokes are the leading cause of long-term disability for adults. They impose high levels of burden on the patient, the family, and national healthcare systems worldwide. This study aimed to assess the effects of patients’ and caregivers’ characteristics on the perceptions of burden in families caring for a loved one living with stroke in Greece. Methods: Using purposive sampling, 109 dyads of patients and their respective caregivers were recruited from the Attica region. Patients completed a questionnaire that included personal characteristics and the Barthel Index, while caregivers completed a set of questionnaires—personal characteristics, revised Bakas Caregiving Outcomes Scale (BCOS), Personal Resource Questionnaire (PRQ 2000), and Center for Epidemiological Studies-Depression (CES-D). Results: Caregiving burden was linked to both patients’ and caregivers’ characteristics. A patient’s educational level, the number of family members living in the same house, the existence of equipment and facilities in the house, and the duration of provided care were associated with perception of greater burden. Regarding caregivers’ characteristics, those in good health had a significantly lower perception of burden. Higher PRQ 2000 scores were significantly associated with higher BCOS scores (less burden), and higher CES-D scores were significantly associated with lower BCOS scores (more burden). Conclusion: Caring for a loved one affected by stroke places a considerable burden on the caregiver. Systematic assessment and intervention strategies can help to identify caregivers at risk so that suitably targeted assistance may be provided.
Background: Caring for a loved one can be rewarding but is also associated with substantial caregiver burden, developing mental outcomes and affecting happiness. The aim of this study was to determine the effects of a four-week, 16-h presential meditation program on physiological and psychological parameters and vagal nerve activity in high-burden caregivers, as compared to a control group. Methods: A non-randomized repeated-measures controlled clinical trial was conducted. Results: According to the ANCOVA results, the global happiness score (F = 297.42, p < 0.001) and the scores for all subscales were significantly higher in the experimental group than in the control group at 5 weeks. Anxiety levels were also significantly reduced in the experimental group (F = 24.92, p < 0.001), systolic (F = 16.23, p < 0.001) and diastolic blood (F = 34.39, p < 0.001) pressures, and the resting heart rate (F = 17.90, p < 0.05). HRV results revealed significant between-group differences in the HRV Index (F = 8.40, p < 0.05), SDNN (F = 13.59, p < 0.05), and RMSSD (F = 10.72, p < 0.05) in the time domain, and HF (F = 4.82 p < 0.05)) in the frequency domain, which were all improved in the experimental group after the meditation program. Conclusions: Meditation can be a useful therapy to enhance the mental health and autonomic nervous system balance of informal caregivers, improving symptoms of physical and mental overload.
Objectives: This study aims to investigate the effects of two different interventions on the self-efficacy and care burden in caregiver family members of patients with schizophrenia. Method: This semi-experimental study involved those caring for family members with schizophrenia. The family members were divided into two experimental groups and one control group. Interpersonal psychotherapy techniques and psychoeducation interventions were together applied to the first group, the second group received only the psychoeducation. Results: Interpersonal psychotherapy techniques applied together with psychoeducation were found to be more effective in reducing the burden of care and increasing the self-efficacy.
Introduction: This study examined the effects of group art therapy on depression, burden, and self-efficacy in primary family caregivers of patients with brain injuries. Method: This was a quasi-experimental, nonequivalent control group and a pre- and post-test design. This study was carried out in one national rehabilitation hospital targeting 41 primary family caregivers of patients with brain injuries. Group art therapy intervention was carried out three days per week comprising 12 sessions over four consecutive weeks. The experimental group (n = 20) received group art therapy, whereas the control group (n = 21) did not. We used a time difference method to minimize the risk of contaminating the control group by sampling sequentially. Results: For depression, although there was a significant difference after the intervention (t = 3.296, p = 0.004), the mean difference score was not statistically significant between the experimental group and the control group (t = 0.861, p = 0.395). The experimental group showed a significantly greater decrease in burden (t = 2.462, p = 0.020) and significantly greater improvement in self-efficacy (t = −6.270, p < 0.001) than the control group. Conclusions: Group art therapy may be an effective nursing intervention for primary family caregivers of patients with brain injuries.
Background: Strong family ties appear to buffer patient's and family members' difficult experiences during life and health crises. The family participatory dignity therapy programme, a patient-family-centred psychological intervention, was developed based on dignity therapy and performed by one therapist in the form of interview according to a specific question prompt. This study aimed to confirm the efficacy of the family participatory dignity therapy programme in improving the psychological well-being and family cohesion and adaptability of patients with haematologic malignancies and their family caregivers. Method: A single-blinded, two-arm parallel group, randomised controlled trial was conducted. Participants: Participants were patient-family caregiver dyads recruited from Fujian Medical University Union Hospital from March to September 2019. A total of 68 eligible dyads agreed to participate and were randomly assigned to the intervention group (n = 33) or control group receiving usual care (n = 35). Each pair of patient-family dyads in the intervention group received two or three interviews (each interview approximately lasting 45 to 60 min) performed by one therapist according to a specific question prompt containing 10 questions for patients and 10 corresponding questions for their family caregivers. To evaluate the effects of the intervention, we assessed patients' hope, spiritual well-being, and family cohesion and adaptability, as well as their family caregivers' depression, anxiety, and family cohesion and adaptability at baseline (T0), 1 week (T1), 4 weeks (T2), and 8 weeks post-intervention (T3) and compared the scores between the groups. A two-way repeated-measures analysis of variance was conducted to examine the effects of time, group, and their interaction. Results: For patients, there was a significant difference in hope (p = 0.001), spiritual well-being (p = 0.002), and family cohesion (p <0.001) and adaptability (p <0.001) between the intervention and control groups. The difference over time was also significant in family cohesion (p = 0.018) and adaptability (p = 0.003). The interaction effects were significant for hope (p = 0.034), spiritual well-being (p <0.001), and family cohesion (p <0.001) and adaptability (p <0.001). For family caregivers, there was a significant difference in anxiety (p = 0.037), depression (p = 0.001), and family adaptability (p = 0.036) between the intervention and control groups. Within groups, a significant difference in family adaptability (p = 0.012) was found. Moreover, the interaction effects were significant on anxiety (p = 0.001) and family cohesion (p = 0.038). Conclusions: The family participatory dignity therapy programme showed a positive effect on promoting patients' hope, spiritual well-being, and family cohesion and adaptability; amongst family caregivers, it decreased anxiety and depression, and enhanced family cohesion and adaptability.
Purpose: This pilot study aimed to examine the influence of death counseling on perceptions, preparedness, and anxiety regarding death and dying among family caregivers of hospice patients. Methods: Death counseling developed based on the SPIKES model was provided to 37 family caregivers in a hospice and palliative care unit. Perceptions, preparedness, and anxiety regarding death were assessed with a self-administered structured questionnaire, and participants' scores before and after counseling were compared using the paired t-test. Results: Significant changes were found in perceptions, preparedness, and anxiety regarding death after counseling. Compared to before counseling, the scores for perceptions of death (t=-4.90, P<0.001) and preparedness for death and dying (t=-16.23, P<0.001) improved, while anxiety (t=3.72, P=0.001) decreased after counseling. Some changes were also found in the types of support that family caregivers needed to prepare for the death of their family members in the hospice care unit. Conclusion: The findings demonstrate that death counseling could help family caregivers prepare for the death of their loved ones. Hospice and palliative care providers should play a key role in supporting family caregivers of hospice patients by developing strategies for counseling.
Introduction: Disorder of consciousness is a clinical condition due to severe brain damage. The impact of consciousness disorder on the family is characterized by a combination of biopsychosocial factors. The burden and suffering perceived by caregivers can cause psychological distress characterized by anxiety, depression, and physical illness. The aim of the study was to investigate the interaction between family dynamics and caregiver burden. Methods: We enlisted 35 caregivers of subjects in a minimally conscious state. Two skilled psychologists administered the Olson's Adaptability and Family Cohesion Assessment Scale and the Novak's Burden Inventory Caregiver Scale to assess family function and family burden, respectively. Results: We found that the caregiver burden correlates with the family adaptability and cohesion, as well as with enmeshment, rigidity, and disengagement. Conclusion: Findings suggest that the traumatic event does not affect the family structure. Families are able to maintain a balanced functioning and control distress.
Background: Taking caring of patients with mental disorders is stressful and people who take care of these patients need to receive enough support and training to overcome this challenging situation. The present study was aimed at investigating the effects of a psychosocial support program on perceived stress of family caregivers of patients with mental disorders. Materials and Methods: This randomized controlled clinical trial was performed on 64 family caregivers of patients with mental disorders referred to Noor and Hazrat-e-Ali Asghar hospital in Isfahan, Iran, in 2018-19. The participants were randomly assigned to the intervention and control groups using a random number table. In the intervention group, the training program was held in 6 sessions of 90-minute training classes twice a week. Data were collected using a demographic characteristics form and the Perceived Stress Scale (PSS) before, immediately after, and 1 month after the intervention. Descriptive and inferential statistical tests such as Chi-square, Mann-Whitney, independent t-test, repeated measures ANOVA, and Kolmogorov-Smirnov test were used to analyze the data in SPSS software. Results: The result of the study showed that the total mean score of perceived stress in the intervention group was significantly less than the control group immediately after (F2=66.29, p<0.001) and 1 month after the intervention (F2=66.29, p<0.001). Conclusions: Delivering a training program on the different dimensions of support family caregivers need will reduce the perceived stress of family caregivers of patients with mental disorders. Therefore, the implementation of this intervention is recommended in this group of caregivers.
Background and Objectives: Family caregivers of people with dementia (PWD) experience high levels of stress resulting from caregiving. This study aimed to investigate the effects of a modified of Mindfulness-Based Cognitive Therapy (MBCT) for dementia caregiving. Research Design and Methods: 113 family caregivers of PWD were randomized to either the intervention group, receiving the 7-session modified MBCT for a period of 10 weeks with telephone follow-up or the control group, receiving the brief education on dementia care and usual care. The caregiving stress (primary outcome) and various psychological outcomes of caregivers and the behavioral and psychological symptoms of dementia (BPSD) in the care recipients were assessed and compared at baseline (T0), postintervention (T1), and at the 6-month follow-up (T2). Results: At both T1 and T2, the intervention group had a statistically greater improvement in stress (p = .02 and .03), depression (p = .001 and .04), anxiety (p = .007 and .03), and BPSD-related caregivers' distress (p = .003 and p = .04). A significant greater improvement was also demonstrated in mental health-related quality of life at T2 (p = .001) and BPSD of the care recipients at T1 (p = .04). The increased caregivers' level of mindfulness was significantly correlated with the improvement of various psychological outcomes at T1 and T2 with a correlation coefficient −0.64 to 0.43. Discussion and Implications: The modified MBCT enhanced the level of mindfulness in the caregivers and was effective to reduce the caregivers' stress and promote their psychological well-being during a 6-month follow-up. Future research is recommended to further examine its effects on the varieties of psychological and behavioral outcomes of both caregivers and care recipients and their dyadic relationships, as well as explore its mechanism of action in facilitating dementia caregiving.
Objective: Multiple sclerosis is a chronic, progressive neurological disease that, due to its special nature, has various physical and mental influences on the patients and their family's lives, decreasing the quality of life and threatening the meaning of life. The purpose of the present study was to evaluate the effectiveness of the group hope therapy training on the quality and the meaning of life in patients with multiple sclerosis and their family caregivers. Method: This quasi-experimental study was performed using pretest-posttest and control group. Thirty patients with multiple sclerosis along with 30 family caregivers who got low to medium scores on the Meaning in Life questionnaire by Steger (MLQ), Multiple Sclerosis Impact Scale (MSIS-29), and the Iranian Quality of Life questionnaire (IRQOL) for the caregivers were selected purposively. Then, the patients were randomly divided into two groups of 15 individuals in experimental and 15 individuals in control groups. The caregivers were grouped in the same manner. The protocol of group hope therapy training was carried out through eight two-hour sessions in two weeks separately on two experimental groups (the patients and the caregivers), and finally the posttest was given to four experimental and control groups. Results: The results of the data showed that the meaning of life in both the patient and the caregiver experimental groups increased significantly (P < 0.001), but there was no significant change in the patient and the caregiver control groups. Conclusion: Group hope therapy training is an effective intervention for improving the meaning of life and the quality of life in patients with multiple sclerosis. Also, any psychological intervention that aims to improve the quality of life in patients in an advanced stage of the disease requires attention to both the physical and the mental issues at the same time. Although group hope therapy training has improved the meaning of life in such patients, it did not have a significant impact on the quality of life. Therefore, paying attention to the stages of multiple sclerosis and the physical condition of the patients during the therapeutic intervention and adopting necessary complementary interventions seems to be essential.
Objectives: Stroke is the third leading cause of disability worldwide, influencing the whole family's health and well-being. Dyadic (i.e., stroke survivor and family caregiver) psychoeducational intervention is a potential alternative to disease management and support, targeting at the dyads of stroke survivors and their caregivers as active participants in partnership. This review aimed to evaluate the current evidence on supporting the dyadic psychoeducational intervention for the functional and psychosocial health of stroke survivors' and their family caregivers. Design: Systematic review and meta-analysis Data sources: Nine English databases (Cochrane Library, Medline, CINAHL, PsycINFO, EMBASE, British Nursing Index, PubMed, Web of Science and Digital Dissertation Consortium) and two Chinese databases (CNKI and Wanfang) were searched to identify eligible studies published from their inception to April 2020. Additional relevant studies were identified from the reference lists and bibliographies of the identified articles and a manual search of relevant journals. Review methods: Studies were searched using keywords based on the 'PICOS' framework. The eligibility of individual full-text articles was independently assessed by two reviewers in accordance with the selection criteria. The risk of bias of the included studies was assessed using Cochrane RoB 2.0. The main outcomes were subjected to meta-analysis whenever possible; otherwise, narrative syntheses were conducted. Results: Eleven studies with 1769 stroke survivors and 1578 family caregivers were identified. The meta-analysis of pooled data suggested that the dyadic psychoeducational intervention had a significant immediate (<1 month) effect on family caregivers' burden (SMD = −0.25, 95% CI: −0.50 to −0.01, p = 0.04) and a long-term (≥6 months) effect on survivors' quality of life (SMD = −0.30, 95% CI: −0.53 to −0.07, p = 0.01). Subgroup pooled analyses indicated that the interventions initiated in hospitals could significantly improve the survivors' functional independence immediately after intervention (SMD = 0.40, 95% CI: 0.08 to 0.72, p = 0.01). Conversely, the interventions initiated at home did not significantly affect this functional outcome. Conclusions: This review supports the notion that the dyadic psychoeducational intervention can be effective in improving the stroke survivors' functional independence and their family caregivers' burden for a short period and the survivors' quality of life in the long run. However, its effectiveness is not conclusive because other psychosocial health outcomes for the stroke survivors and their family caregivers have not yet been found to significantly improve after intervention. Therefore, further large-scale randomised controlled trials with a high-quality design are warranted to evaluate their effectiveness in diverse functional and psychosocial health outcomes for stroke survivors and their family caregivers.
Objectives: Caring for a family member with dementia is considered one of the activities with the greatest negative impact on a person's mental health. Developing long‐lasting and effective strategies is a challenge for caregivers. This study sought to evaluate the impact of an intervention based on a programme of motivational coaching delivered by telephone in a group of caregivers of patients with dementia compared to a control group. Methods: A randomised controlled trial with a control group and an intervention group. (CONSORT guidelines were used). Telephone calls were made during six weeks, involving a process of coaching and motivational interviews. The following variables were measured in caregivers: self‐efficacy of caring, depression, perceived stress, frequency of problematic behaviours and dysfunctional thoughts. Assessments were conducted at three time points: baseline, post‐intervention and three months’ post‐intervention. Results: In total, 106 caregivers participated (53 subjects in the control group and 53 in the intervention group). Statistically significant differences (ANCOVA) were found between both groups for the self‐efficacy and stress variables, with improved results in the intervention group (p < .01). Furthermore, statistically significant differences were found in the intervention group between the baseline and post‐intervention assessments, with improvements in self‐efficacy, decreased stress and decreased dysfunctional thoughts (p < .05). The results were maintained over time for both groups. Conclusions: An intervention based on telephone calls using a health coaching approach with motivational interviewing appears to be effective for the improvement of self‐efficacy and mental health of caregivers of people with moderate dementia. Furthermore, these effects appear to be maintained over time.
Objective: to analyze the effectiveness of a support intervention on the burden and stress of family caregivers and on the stroke survivors’ independence level, compared to the Control Group. Method: a quasi-experimental study conducted with 37 participants (Intervention Group, n=20; and Control Group, n=17). The intervention lasted 8 months. The outcomes of the caregivers (burden and stress) and of the survivors (independence level) were measured by the Zarit, Perceived Stress and Katz scales, at the following moments: pre-intervention, the fourth month of the intervention and post-intervention. The differences of these outcomes between groups and intra-group and the effect size were calculated using the Mann-Whitney and Friedman tests (Bonferroni adjustment by Wilcoxon) and the Kendall’s W coefficient. Results: the Intervention Group reduced burden (p=0.039) and stress (p=0.009), mainly, after 8 months of intervention, which was not observed in the Control Group. The independence level did not change between the groups or moments (p>0.05). The intervention presented moderate effect size (p=0.45 and p=0.54). Conclusion: the intervention was effective to reduce the burden and stress of family caregivers, but did not alter the stroke survivors’ independence level, when compared to the Control Group.
Background: Psycho-education may have a positive effect on family caregivers of clients with mental disorders, and promote positive psychological states such as hope. The present study aims to investigate the effect of virtual social network-based psycho-education on the hope of family caregivers of clients with severe mental disorders. Method: This study is a quasi-experimental research with a control and experimental groups. The participants of the study were 72 family caregivers of clients with severe mental disorders (36 in each group). Data were collected using demographic questionnaire and Adult Hope Scale before the study, immediately after the end of the training (first post-test), and 4 weeks afterwards (second post-test). The experimental group received psycho-education through Telegram App for four weeks. Results: The results of the demographic questionnaire showed that both groups were homogeneous. The results of the Adult Hope Scale indicated that the mean score of both control and experimental groups were statistically significant and increased in the experimental group (P < 0.001). In addition, the changes of hope score in the experimental group were statistically significant in the first post-test than the pre-test, and in the second post-test than the first post-test and pre-test (P < 0.001). Conclusions: The findings of this study suggested that virtual social network-based psycho-education promotes the hopes of the family caregivers of clients with severe mental disorders. Due to the low cost and fast access of people to virtual networks, the content of this educational program can be widely used for family caregivers.
Background: Anxiety and depression are common mental illness in stroke caregivers, resulting in significant stress to the emotion health of caregivers. Caregivers’ emotion can seriously affect the recovery rate of stroke patient, therefore, how to control and affect the caregivers’ anxiety and depression is of great importance. Method: Here three multiple centers observation and validation study were performed to screen out the risk factors for development of anxiety and depression in main family caregiver, and the effect of anxiety and depression of family caregivers on 6-month mortality of patients with moderate-severe stroke. Results: The severity of the stroke, the duration of care time and the medical payment associated with increased risk of anxiety and depression. Anxiety and depression of main family caregivers are associated with increased risk 6-month mortality of patients with moderate-severe stroke. Conclusions: Therefore, the support provided to the family caregivers might have positive effect on prognosis of the patients with stroke.
Aims and objectives: This study evaluates the short‐term (3 months), medium‐term (6 months) and long‐term (12 months) effect of family nursing therapeutic conversations added to conventional care versus conventional care on social support, family health and family functioning in outpatients with heart failure and their family members. Background: It has been emphasised that increased social support from nurses is an important resource to strengthen family health and family functioning and thus improve the psychological well‐being of patients with heart failure and their close family members. Design: A randomised multicentre trial. Methods: A randomised multicentre trial adhering to the CONSORT checklist was performed in three Danish heart failure clinics. Consecutive patients (n = 468) with family members (n = 322) were randomly assigned to either the intervention or control group. Participants were asked to fill out family functioning, family health and social support questionnaires. Data were measured ahead of first consultation and again after 3, 6 and 12 months. Results: Social support scores increased statistically significant both at short‐term (p = 0.002) medium‐term (p = 0.008) and long‐term (p = 0.018) among patients and their family members (p = <0.001; 0.007 and 0.014 respectively) in the intervention group in comparison with the control group. Both patients and their family members reported increased reinforcement, feedback, decision‐making capability and collaboration with the nurse. No significant differences between the intervention and control groups were seen in the family health and family functioning scales among patients and family members. Conclusions: Family nursing therapeutic conversations were superior to conventional care in providing social support from nurses. Relevance to clinical practice: Family nursing therapeutic conversations are suitable to improve the support from nurses among families living with heart failure.
Background: Increased demands associated with caregiving may lead to deleterious physical and mental health outcomes. Caregiving has proven to have consequences that affect both physical and psychological well-being. The purpose of this systematic review and meta-analysis was to assess the effects of exercise training on the mental and physical health of caregivers for persons living with chronic illnesses. Methods: A systematic review following the Prisma methodology was performed searching eight databases. Thirteen out of 1,632 screened studies were included for analysis. Results: The standardized mean difference was used as the effect size (ES) and was calculated such that a positive ES indicated efficacy of exercise training for improving health. Overall, the meta-analysis yielded a statistically significant and small-to-medium ES (overall ES = 0.30; 95% confidence interval = [0.08, 0.52]; p =.007). Conclusions: Our analysis supports exercise training to improve the mental and physical health of family caregivers of persons living with chronic illnesses.
Objectives: The family caregivers of patients undergoing coronary artery bypass graft (CABG) surgery experience considerable physical and emotional distress. This study aimed to investigate the effect of an educational support programme on caregiver burden among the family caregivers of patients undergoing CABG surgery in Iran. Methods: This non-randomised controlled clinical trial was conducted from January to April 2017 at a cardiovascular centre in Tehran, Iran. A total of 80 family caregivers of patients undergoing CABG surgery were sequentially selected and non-randomly assigned to intervention and control groups. The control group received routine care, whereas the intervention group received additional education sessions at baseline, prior to surgery, the day after surgery and before discharge. Caregiver burden was compared at baseline and six weeks post-discharge using the Persian-language versions of the Caregiver Burden Inventory (CBI) and Katz Index of Independence in Activities of Daily Living (IADL). Results: A significant difference was observed between family caregivers in the control and intervention groups with regards to pre-post differences in mean CBI scores (+1.67 ± 19.23 versus +17.45 ± 9.83; P <0.001), with an effect size of −1.14. In addition, there was a significant increase in mean post-discharge IADL scores among CABG patients in the intervention group compared to the control group (4.42 ± 1.05 versus 3.07 ± 1.09; P <0.001). Conclusion: An educational support programme significantly reduced caregiver burden among the family members of patients undergoing CABG surgery in Iran. As such, in addition to routine care, healthcare providers should provide educational support to this population to help mitigate caregiver burden.
Background: Caregivers experience social, physical and psychological burdens in caring for people with dementia. A study was conducted to assess the efficacy of a multimodal comprehensive care methodology training programme for the family caregivers of people with dementia. Methods: This research was an intervention trial with a quasi-experimental design. A total of 148 family caregivers of people with dementia participated in a multimodal comprehensive care methodology training programme for 6 hours (three times for 2 hours) in 3 months, which was followed by weekly delivery of information via postcard. The care burden of the caregivers was evaluated by the Japanese short version of the Zarit Burden Interview (J-ZBI) before the training, 1 month post-training and 3 months post-training (primary outcome). Each caregiver assessed the symptoms of the people with dementia for whom they provided care with the Behavioral Pathology in Alzheimer’s Disease (Behave-AD) (secondary outcome). Results: A total of 117 family caregivers (79%) were assessed 3 months after training. Over the course of the programme, the care burden significantly decreased from pre-training to 3 months post-training (P < 0.001). The mean care burden scores before, 1 month after, and 3 months after the intervention were 13.3, 10.9 and 10.6, respectively. The mean Behave-AD score of 101 people with dementia (68%) 3 months post-training was lower than that at pre-training, but the difference was not statistically significant (from 13.6 to 11.8, P = 0.005). Conclusions: The multimodal comprehensive care methodology training was associated with a reduction in the care burden of family caregivers. These findings suggest that randomized controlled trials with larger sample sizes are needed. Trial registration UMIN Clinical Trials Registry (UMIN-CTR), UMIN000043245.
Objectives: The present study aims to explore the economic distress and pertinent coping strategies in families with a member suffering from a severe mental illness. Furthermore it endeavors to gauge the impact of illness burden and that of the Greek recession on economic distress, while disentangling their contribution. Methods: In total, 190 key relatives of people with severe mental illness were recruited from community mental health services in the region of Attica. Relatives completed a self-reported questionnaire consisting of the Index of Personal Economic Distress, the Family Burden scale and the Family Rituals scale. Information on financial strategies for tackling recession and income loss due to the recession was also gleaned. Results: Regarding economic distress, only 15% had frequent difficulty meeting routine financial demands in their household. The preponderant strategy was spending savings (56.8%). Income category and spending less on basic needs were the main predictors of economic distress. Conclusions: Objective poverty indices rather than burden predicted economic distress to a greater extent.
Objectives: To examine similarities and dissimilarities in patient and family caregiver dyads in their experience of stress, support, and sense of security. Methods: 144 patients and their family caregivers participated. Patients were admitted to six Swedish specialist palliative home care units and diagnosed with a non-curable disease with an expected short survival. We analysed similarity patterns of answers within dyads (correlations) as well as dissimilarities, expressed as the difference between within-dyad responses. The latter were subjected to a model-building procedure using GLM, with 13 sociodemographic and clinical characteristics as independent variables. Results: Within dyads, patients and family caregivers scored similar in their perception of support and sense of security with care. There was also dissimilarity within dyad responses in their perception of stress and support that could be attributed to sociodemographic or clinical characteristics. When patients scored higher levels of stress than family caregivers, the family caregiver was more likely to be male. Also family caregiver attachment style (attachment anxiety), patient age and the relationship of the family caregiver to the patient explained dissimilarities within the dyads. Conclusions: Patients and family caregivers within the dyads often, but not always, had similar scores. We suggest that it is important that the healthcare staff identify situations in which perceptions within the dyads regarding stress and perception of support differ, such that they can recognise patients' and family caregivers' unique needs in different situations, to be able to provide adequate support and facilitate dyadic coping.
Objectives: The aims of this study were to verify actor and partner effects, by examining the effects of family resilience on post-traumatic stress symptoms (PTSS) among Chinese breast cancer patients and their primary family caregivers. Methods: In this cross-sectional study, 104 breast cancer patients (age range 20–75, Mean = 47, Standard Deviation = 10), and their principal caregivers (n = 104), were recruited from a comprehensive cancer center of a public hospital in China. The patients and their caregivers self-reported sociodemographic, family resilience, and PTSS factors. The actor-partner interdependence model were adopted to examine whether the patients and caregivers' perceived family resilience could contribute to their own ("actor effect") and each other's ("partner effect") PTSS. Results: There were significant correlations between patients' and caregivers' shortened Chinese version of Family Resilience Assessment Scale scores (r = 0.58, p < 0.01) and Post-traumatic Stress Disorder Checklist-Civilian Version scores (r = 0.69, p < 0.01). Caregivers' perceived family resilience was negatively related to their PTSS (actor effect), and the patients' PTSS (partner effect). However, the patients' perceived family resilience was not significantly related to their or the caregivers' PTSS. The primary caregivers' perceived family resilience had both actor and partner effects on patient/caregiver PTSS within the first year of breast cancer diagnosis. Conclusions: Family-based interventions should be designed to enhance family resilience to decrease PTSS within families dealing with cancer patients. Supportive care should focus on the primary family caregivers within the first year of breast cancer diagnosis.
Background: Grandmothers in the "sandwich generation" are considered as those women who are potential caregivers for two generations: older relatives and grandchildren. Methods: With the goal of understanding the factors that affect their stress and health, 149 women from southwestern Spain were interviewed using an ad hoc questionnaire that included standardized scales and subscales. Results: The results showed that age, coping strategies based on emotional support and acceptance, as well as optimism and social support improved the health of these women by reducing their perceived stress. Although caring for older relatives is related to family conflicts and worse health, conversely, caring for grandchildren is related to slightly better health. Conclusions: The results are useful for planning psychological interventions with these women and highlight the need to include family interventions.
Background: The number of informal caregivers over the age of 50 who care for multiple family members including children and elderly relatives – a practice termed 'double care' – has steadily increased in Asian countries. Despite the rise in depression and stress among such caregivers, few studies have examined factors that may mitigate their emotional exhaustion. Methods: This research examines relationships between care responsibilities and emotional exhaustion, and the mediation effects of self-care on people in their 50s through 70s who provide care to multiple family members including children and elderly parents or relatives. The participants of this study were 183 people who were providing double care. The authors used care responsibilities as the independent variable, self-care as a mediator, and emotional exhaustion as the dependent variable. Results: Results indicate that care responsibilities significantly affect emotional exhaustion, and that emotional exhaustion is mediated by self-care. Conclusions: The findings suggest that attention to self-care may reduce emotional exhaustion among caregivers in this older age group.
Background: Informal caregivers often report exhaustion when providing care, which can be related to forms of burnout. Yet, there is no systematic inventory of studies comparing caregivers and non-caregivers in terms of burnout. Methods: For the present meta-analysis, studies comparing burnout in informal caregivers and non-caregivers were screened and included. Findings: Two categories of studies were found: those on family care burnout (spousal or parental burnout) and those on professional burnout (mostly in healthcare). For family care burnout studies, informal caregivers reported more emotional exhaustion, and, to a lesser extent, depersonalization and reduced personal accomplishment than non-caregivers. For studies on professional burnout, workers providing informal care also reported more emotional exhaustion than workers not providing such a care. Conclusion: Overall, the results indicate that providing informal care represents a risk for role burnout. In family care burnout studies, these results confirm the assumption that providing informal care adds extra weight on the individuals’ shoulders. In professional burnout, these results support the role accumulation theory, pointing that an additional weight in one’s role, i.e., providing informal care, has an impact on another role, work. This work emphasizes the consideration of the multifaceted impact that the caregiving role can have on the individual.
Background: Researchers are continuing to focus on the nature and sources of burden of family caregivers of persons living with dementia. Caregiving stress and burden are assessed and addressed by social workers, including at high-risk times such as hospitalization. Methods: This study tested whether adult-child family caregivers experience greater perceived burden than spousal caregivers, accounting for risks of acute stress which can accompany hospitalization for their care recipient, where social workers may be meeting with family caregivers for the first time. Family caregivers (N = 76; n = 42 adult-child; n = 34 spouse) were recruited during care-recipient clinical treatment. The settings of care included an outpatient memory care program and an inpatient geriatric psychiatry service. Results: Results showed that adult-child caregivers reported greater burden as compared with spousal caregivers, but no differences regarding depressive symptoms, perceived stress, or grief. After controlling for demographics and location of care, being an adult-child caregiver remained a predictor of greater burden severity. Being an adult-child family caregiver may place an individual at increased risk for experiencing high burden. Conclusions: These findings suggest socials workers should consider how adult-child caregivers may benefit from strategies to address and reduce burden, beyond those typically offered to spousal caregivers.
Background: Given the growing number of family members who provide care to adults with a disability or illness, this study examined differences in coping resources and mental health among family caregivers of persons with various health conditions. Methods: Within the context of Ensel and Lin’s stress paradigm, 234 family caregivers participated in an online study by completing validated measures of resourcefulness, spiritual practices, caregiver burden, anxiety, and depression. Caregivers were categorized into nine groups according to their care recipient’s condition. Results: The groups differed significantly on burden and resourcefulness. Greatest burden and lowest resourcefulness were found in caregivers of persons with traumatic brain injury, stroke, and dementia. Caregivers across all groups were found to be at a similarly high risk for anxiety and depression. Conclusions: These results provide insights for tailoring interventions for caregivers, particularly those whose care recipients have traumatic brain injury, stroke, or dementia, who may benefit from resourcefulness training.
Background: Families who care for schizophrenia suffer stress and lose the ability to treat. Family stress can be mediated by resilience. Objective: This study aimed to develop a family resilience model based on family‐centred nursing for persons with schizophrenia. Methods: This study used a mixed‐method cross‐sectional approach. The population was a family of caregivers for persons with schizophrenia at Mental Hospital in Surabaya, Indonesia. The respondents were 137 families recruited by simple random sampling. Variables include family factors, risk factors, protective factors, patient factors, family stress, family resilience and family ability to care for persons with schizophrenia. The data were collected using questionnaires and then analysed with partial least squares. The statistical results afforded material for focus group discussions with six families and 10 health workers (psychiatrists, psychologists and nurses) in order to improve the model. Results: The result showed family stress was influenced by family factors (path coefficient = −0.145; t = 2.26), risk factors (path coefficient = 0.753; t = 16.7) and patient factors (path coefficient = 0.159; t = 3.23). Family resilience is influenced by risk factors (path coefficient = 0.316; t = 2.60), protective factors (path coefficient = 0.176; t = 2.22) and family stress (path coefficient = 0.298; t = 2.54). Family resilience affects the family ability to treat persons with schizophrenia (path coefficient = 0.366; t = 5.36). The family resilience model increases family capability by 13.4%. Conclusions: The model helps families through stress management by controlling the burden and stigma so that families are able to survive, rise, growing stronger and be better at caring for persons with schizophrenia.
Background and Objectives: People with Alzheimer's disease and related dementias (ADRD) exhibit losses in daily function, as well as behavioral and psychological symptoms, that place a great deal of burden on family caregivers and exert a major influence on the quality of life of these individuals and their families. Despite years of intervention research in the field, there are few studies related to the impact of providing care for a person with ADRD on the family as the unit of analysis. While numerous findings have reported the effects of the chronic stress of caregiving for an individual, analysis of family quality of life is a concept that has been generally overlooked in the ADRD field. The purpose of the present study was to develop and test the Family Quality of Life in Dementia (FQOL-D) scale. Research Design and Methods: Face validity was obtained via a Delphi survey of a multidisciplinary team of dementia providers and researchers; initial psychometric evaluation of the instrument was obtained via family respondents (N = 244). Results: Internal consistency and reliability were established for the instrument. The FQOL-D scale exhibited excellent factorability and concurrent validity with existing scales assessing family psychosocial measures. Discussion and Implications: The initial psychometric testing of the FQOL-D instrument is favorable. Additional use of the FQOL-D instrument in health care settings is warranted to evaluate further the clinical utility of the instrument.
Objectives: This study had two purposes: to develop an instrument for assessing family members' caregiving needs before their older relative's knee joint-replacement surgery and to determine instrument psychometrics. Methods: In phase 1 of this validation study, we generated 34 items based on previous interviews with 138 family caregivers of patients with knee osteoarthritis (OA), an intensive literature review, and the authors' clinical experiences. In phase 2, we examined the content and face validities of the 34-item Family Members' Caring Needs Inventory (inventory) to develop a 32-item inventory. In phase 3, 150 family members of outpatients with knee OA were recruited from three hospitals in northern Taiwan and surveyed with the inventory to determine its internal consistency reliability and test–retest reliability. Results: The final 30-item inventory had excellent content and face validities. Its factor analysis yielded a five-factor solution, accounting for 82.9% of the variance. The inventory had Cronbach's α = 0.97 and intraclass correlation coefficient = 0.93, indicating very high internal consistency reliability and test–retest reliability. The inventory was perceived as easy to complete and yielded highly acceptable validity and reliability levels. After cross-cultural adaptation, this tool may be used to assess family members' caregiving needs before their relative's knee-replacement surgery. The role of family members and spouses in supporting patients with osteoarthritis (OA) is crucial. After cross-cultural adaptation, the Family Members' Caring Needs Inventory may be used by health care providers to assess and provide relevant information to meet the needs of family members caring for an older relative with knee OA. Conclusions: This assessment and specific caregiving information for family members of older knee OA patients may promote patients' quality of life and decrease their OA-related burden.
Background: The purpose of this study was to develop and administer surveys that assess patient and family caregiver experiences with care transitions and examine the psychometric properties of the surveys. The surveys were designed to ask about 1) the transitional care services that matter most to patients and their caregivers and 2) care outcomes, including the overall quality of transitional care they received, patient self-reported health, and caregiver effort/stress. Methods: Survey items were developed based on a review of the literature, existing surveys, focus groups, site visits, stakeholder and expert input, and patient and caregiver cognitive interviews. We administered mail surveys with telephone follow up to patients recently discharged from 43 U.S. hospitals. Patients identified the caregivers who helped them during their hospital stay (Time 1 caregiver) and when they were home (Time 2 caregiver). Time 1 and Time 2 caregivers were surveyed by telephone only. The psychometric properties of the survey items and outcome composite measures were examined for each of the three surveys. Items that performed poorly across multiple analyses, including those with low variability and/or a high missing data, were dropped except when they were conceptually important. Results: The analysis datasets included responses from 9282 patients, 1245 Time 1 caregivers and 1749 Time 2 caregivers. The construct validity of the three proposed outcome composite measures—Overall Quality of Transitional Care (patient and caregiver surveys), Patient Overall Health (patient survey) and Caregiver Effort/Stress (caregiver surveys) —was supported by acceptable exploratory factor analysis results and acceptable internal consistency reliability. Site-level reliability was acceptable for the two patient outcome composite measures, but was low for Caregiver Effort/Stress (< 0.70). In all surveys, the Overall Quality of Transitional Care outcome composite measure was significantly correlated with other outcome composite measures and most of the single-item measures. Conclusions: Overall, the final patient and caregiver surveys are psychometrically sound and can be used by health systems, hospitals, and researchers to assess the quality of care transitions and related outcomes. Results from these surveys can be used to improve care transitions, focusing on what matters most to patients and their family caregivers.
Objective: The purpose of the study was to develop a short form of the revised diabetes family conflict scale (DFCS) in a racially and income diverse sample while retaining strong psychometric properties. Methods: One seventy nine youth with type 1 diabetes (ages 12–18 years) and caregivers completed the DFCS‐Revised as well as assessments of adherence, psychosocial functioning, and diabetes‐related stress. Hemoglobin A1c was also obtained. The sample was split at random into a development sample and validation sample. Results: Confirmatory factor analyses in the validation sample supported the use of a six‐item short form (DFCS‐SF) either as a total score (6‐items) or a direct (3‐item) and indirect (3‐item) score. Variations of the DFCS‐SF (three items of the 6‐item short form) also had acceptable model fit. The short‐form questionnaires had acceptable internal consistency and convergent validity (6‐item: Cronbach's a = 0.865, full scale DFCS r = 0.954; 3‐item: Cronbach's a = 0.757, full scale DFCS r = 0.912). The DFCS‐SF showed measurement invariance across both youth and caregiver respondents. Greater report of the DFCS‐SF by both youth and caregivers was significantly associated with higher HbA1c, more diabetes‐related stress, and more psychosocial concerns. Conclusions: The DFCS‐SF developed in the present study shows psychometric integrity in a diverse population of youth and can be utilized by providers to rapidly assess and potentially implement interventions to reduce diabetes family conflict, a psychosocial concern which is associated with elevated HbA1c, non‐optimal adherence, diabetes‐related stress, and psychological distress.
Introduction: Caring for people with cognitive problems can have an impact on informal caregivers’ health and well-being, and especially increases pressure on healthcare systems due to an increasing ageing society. In response to a higher demand of informal care, evidence suggests that timely support for informal caregivers is essential. The New York University Caregiver Intervention (NYUCI) has proven consistent effectiveness and high adaptability over 30 years. This study has three main objectives: to develop and evaluate the Flemish adaptation of the NYUCI in the context of caregiving for older people with early cognitive decline; to explore the causal mechanism of changes in caregivers’ health and well-being and to evaluate the validity and feasibility of the interRAI Family Carer Needs Assessment in Flanders. Methods and analysis: Guided by Medical Research Council framework, this study covers the development and evaluation phases of the adapted NYUCI, named PROACTIVE—suPpoRting infOrmal cAregivers of older people with early CogniTIVe declinE. In the development phase, we will identify the evidence base and prominent theory, and develop the PROACTIVE intervention in the Flemish context. In the evaluation phase, we will evaluate the PROACTIVE intervention with a pretest and posttest design in 1 year. Quantitative data will be collected with the BelRAI Screener, the BelRAI Social Supplement and the interRAI Family Carer Needs Assessment at baseline and follow-up points (at 4, 8 and 12 months). Qualitative data will be collected using counselling logs, evaluation forms and focus groups. Quantitative data and qualitative data will be analysed with SAS 9.4 software and NVivo software, respectively. Efficacy and process evaluation of the intervention will be performed. Ethics and dissemination: This study has been approved by the Ethics Committee of KU Leuven with a dossier number G-2020-1771-R2(MAR). Findings will be disseminated through community information sessions, peer-reviewed publications and national and international conference presentations.
Aims: The aim is to develop and test an integrative model based on the stress and coping paradigm and the existential paradigm, to explain positive aspects of caregiving among family caregivers of persons with dementia. Design: A mixed method research, comprises a longitudinal exploratory study and a descriptive qualitative study. Methods: A total of 370 family caregivers will be recruited from community elderly centres. Questionnaires on positive aspects of caregiving and its predictors (including active dementia management strategies, meaning‐focused coping, and self‐efficacy) and contextual factors (including social support, religiosity, continuous good dyadic relationship quality, and intrinsic motivation towards caregiving) will be administered. Positive aspects of caregiving will be reassessed six months later. Path analysis will be used to test the hypothesized model. A subsample of 30 family caregivers will be interviewed individually to explore how positive aspects of caregiving develop from the caregiving experience. Inductive thematic analysis will be used to for the qualitative data analysis. The funding was approved in January 2018. Discussion: Positive aspects of caregiving represents the extent to which the caregiving experience is seen as enriching an individual's life space and resulted in health protective effects. With the increasing evidence to indicate its associating factors, it is imperative to identify the theoretical model to comprehensively elucidate the process for its development. Impact: Theoretically, this study will advance the knowledge of dementia caregiving by generating a comprehensive theory‐driven predictive model to explain how positive aspects of caregiving is developed among the family caregivers. In terms of nursing practice, the findings can inform the development of intervention to improve positive aspects of caregiving and thereby acts as a catalyst to promote the paradigm shift from 'reducing limitations' to 'optimizing strengths' in family caregivers support services.
Purpose: The present study was conducted to determine the care burden and psychiatric symptom levels of the caregivers of schizophrenic patients. Design and Methods: The caregivers of schizophrenic patients were included in this descriptive study. Findings: It was determined that there was a statistically significant difference in the care burden scores and the education, family type, and the presence of physical diseases of the caregivers (P <.05). It was determined that there was a statistically significant positive relation between age and care duration (r =.339, P =.001). Practice Implications: It is recommended that the family members are guided to plan activities that will allow the family members to relax and cover their own needs.
Purpose: To record the health promotion behaviors of family caregivers of stroke survivors, as well as potential determinants that could affect these behaviors. Methods: A cross-sectional study was carried out through home visits in the Attica region using the convenience sampling method. The studied population included 109 survivors who had suffered a stroke and experienced functional problems, and their 109 primary caregivers, who were family members, lived in the same house and were fully responsible for their care. The dependent variables were the caregivers’ health promotion behaviors, while the independent variables were the survivors and caregivers’ demographic characteristics, survivors’ functional capacity, depression, social support and changes in caregivers’ lives from caring. Results: Better health promotional behaviors were associated with the following: patient having advanced age and a high level of functionality, caregivers assessing their own state of health as “good”, greater social support, a higher educational level and a higher income level. In addition, more hours of patient care were associated with a less healthy lifestyle for caregivers. Conclusions: Promoting the health of family caregivers of stroke survivors is crucial for both survivors and caregivers. For this reason, it is of great importance to detect factors that affect the health promotion behaviors of caregivers in order to carry out appropriate interventions and improve their quality of life.
Aims and Objectives: This study examined the predictors of caregiver burden based on patient and caregiver characteristics in a sample of Spanish caregivers looking after adult patients with chronic disease. The effect of task type and patient–caregiver interaction is also analysed. Background: Specific predictors of caregiver burden have been widely examined in the literature. Few studies, however, jointly analyse a wide range of factors, including the effect of task type and patient–caregiver interaction. Design: Correlational study.MethodsOne hundred and thirty five informal caregivers for 148 care recipients were recruited from primary health care centres. The caregivers responded to the short version of the Zarit Burden Interview (ZBI), the DEPendency index‐6 Dimensions (DEP‐6D), and reported how long they spent on caregiving on a daily basis. Sociodemographic and health characteristics were also recorded. Linear and logistic regression models were used to evaluate factors associated with ZBI scores and the likelihood of being severely burdened, respectively. This research complies with STROBE guidelines for observational studies. Results: Severe burden was present in 62% of the caregivers. Regression analysis shows that burden severity increases significantly with the level of dependence when the latter is measured either by DEP‐6D or by time spent on basic activities. Care related to incontinence and mobility has the greatest effect on burden, which is aggravated when the patient has behavioural problems. Poor caregiver health or not being retired also contributes to burden levels. Conclusions: These results establish that caregiver burden is related to characteristics of both the caregiver and the care recipient as well as to their interaction.Relevance to clinical practiceThe findings indicate that the socio‐sanitary attention focused on reducing caregiver burden must address the caregiver and patient as a dyad. Identifying the dependence level and the patient's aggressive behaviour can be a good predictor of caregiver burden.
Background: The purpose of this study was to identify patterns of depressive symptom trajectory and examine the associations of the symptom trajectory with caregiving burden, family function, social support, and perceived health status of caregivers of stroke survivors during the first year of caregiving after discharge from rehabilitation center. Methods: Caregivers of stroke survivors completed a survey of depressive symptoms, caregiving burden, family function, perceived availability of social support, and perceived health status at postdischarge and 1 year. Patterns of depressive symptom trajectory (ie, symptom-free, symptom relieved, symptom developed, and persistent symptom groups) were identified by grouping depressive symptoms based on 2 assessments using the Center for Epidemiologic Studies-Depression. Repeated-measures analysis of variance and multinomial logistic regression were used to examine the associations. Results: Of the 102 caregivers, 57.8% were symptom-free, 20.6% experienced persistent depressive symptoms, 11.8% relieved depressive symptoms, and 9.8% developed depressive symptoms. There were significant changes in family function (Wilks A = 0.914, P = .038) and perceived health status (Wilks A = 0.914, P = .033) among the groups during the first year of caregiving. The persistent symptom group reported the highest level of burden and the lowest level of family function and perceived availability of social support at both assessment times. Compared with symptom-free caregivers, caregivers with persistent depressive symptoms were 7 times more likely to have fair/poor health rather than excellent/very good health at 1 year (odds ratio, 7.149; P = .012). Conclusion: Caregivers with persistent depressive symptoms are the most vulnerable to negative psychosocial outcomes and poor perceived health status during the first year of caregiving from discharge for stroke survivors.
Background: While most intervention studies conducted with dementia family caregivers have focused on depressive symptoms as the main outcome, no study has analyzed the effects of an intervention on comorbid clinical presentations of depressive and anxious symptomatology. Objective: The aim of this study was to examine the association between clinical depressive and anxious symptomatology at baseline and treatment responses of dementia family caregivers using samples from two randomized intervention trials with the same pre-post design. Methods: Specifically, the effects on depressive and anxious comorbidity of three intervention conditions (Cognitive Behavioral Therapy (CBT), Acceptance and Commitment Therapy (ACT), and a control group (CG)) were analyzed. Participants were 130 dementia family caregivers. In addition to sociodemographic variables, depressive and anxious symptomatology were measured. Results: Caregivers with clinical depressive and anxiety comorbid symptoms at baseline recovered less well from depressive symptoms after CBT (45.45%) and ACT (47.72%) interventions than caregivers with non-comorbidity (100% recovery in both treatments). No significant association between comorbidity and treatment responses on depression was found for the control group. Regarding anxiety, among participants with comorbidity at baseline, 36.36% of caregivers in CBT and 30.9 % in the ACT group recovered from anxiety symptoms after treatment, compared to 6.45% in the control group. Similar results were obtained regarding those caregivers who recovered both from clinical depressive and anxiety symptoms and showed comorbidity at baseline. Conclusion: Caregivers that show comorbid depressive and anxiety symptoms at baseline may benefit less from interventions than caregivers who do not show comorbidity.
Background and Objectives: Few studies explore both negative and positive perspectives of family members who relinquish home care of a family member with dementia for systemic aged care. Research Design and Methods: This phenomenological study sought the 'lived' experience of relinquishing the role of home carer for a family member with mild to severe dementia to others within care home settings, by seeking to understand the impact of aged care on family members' psychological well-being. Using semi-structured interviews, positive and negative subjective interpretations from 17 families (27 individuals) provided data for analysis, following the protocols of interpretative phenomenological analysis. Results: One superordinate theme, mistrust/integrity, overarched oscillation between mistrust of the aged care system and a struggle for personal integrity in caring for these participants. Two sub-themes emerged: intrinsic trauma and extrinsic trauma. Intrinsic trauma explained feelings of helplessness and guilt, and internally directed responses that triggered a retreat into submission ultimately reducing the participant's role in advocacy. Extrinsic trauma represented externally directed responses such as anger and frustration, where family members became more engaged and watchful and recognised a need for vigilance and advocacy. Paradoxically oscillating between these personal struggles, participants exhibited growth, a third theme that defined assertive/advocacy utilised to nurture hope, gratitude, courage and change. Discussion and Implications: Family members experienced complex distress as they relinquished home care to others within systemic aged care for a member with dementia. By developing adaptive responses as appropriate, for example, advocating for their family member or accepting compliance with treatment, collaborative care between family and staff created better outcomes for the family member with dementia.
Background: Caregivers are generally family members of the person and may experience psychological difficulties and may need psychological help. [...]the aim of this study is to investigate the effectiveness of Cognitive Behavioral Therapy (CBT) based interventions applied to family caregivers of people with dementia. [...]in this study, it is aimed to make a systematic review of the effects of CBT-based interventions on family caregivers of people with dementia. Methods: The current study carried out a systematic review of literature in accodance with Preferred Reporting Items for Systematic Reviews and Meta-Analysis (PRISMA) guideliness which used in reporting systematic reviews (Moher et al. 2009). Since a national study in this context could not be reached, searches were made in English and were conducted during March 2020 using the following search terms: "cognitive behavioral therapy" and "caregivers of people with dementia", "cognitive behavioral therapy" and "dementia caregivers" "cognitive behavioral therapy" and "caregivers of Alzheimer patients", and "cognitive behavioral therapy" and "Alzheimer's caregiver". Findings: In Table 2, interface mode (face-to-face, telephone and Internet), treatment paradigm (individual and group), schedule of sessions (number, frequency and duration), CBT techniques and interventions applied, evaluation time points, measurement methods and benefits of CBT is given.
Purpose: The purpose of this study was to examine the knowledge, caregiving performance, stress levels, and mental health of family caregivers of terminal cancer patients with delirium, insofar as these characteristics are relevant for delirium. Methods: Between May 1, 2019, and June 1, 2020, 96 family caregivers of terminal cancer patients with delirium completed a structured survey, the results of which were analyzed. Results: The average correct answer rate for delirium-related knowledge was 53.2% across all subcategories, which included knowledge of causes (41.5%), symptoms (65.4%), and caregiving (51.7%). The average score for family caregivers' performance of caregiving for delirium was 2.60 ±0.5, with subcategories including caregiving for patients without delirium (2.16±0.95), caregiving for patients with delirium (2.84±1.01), and stress related to caregiving for delirium (39.88±16.55), as well as categories such as patient-related caregiving (44.32±28.98), duty-related caregiving (44.21±30.15), and interpersonal relationship-related caregiving (22.35±25.03). For mental health, the average score among family caregivers was 1.96± 0.70, with the highest score being for the category of additional items (2.28±0.84). Family caregivers of patients with hyperactive delirium as the delirium subtype had higher scores for caregiving performance than caregivers of patients with mixed delirium. Conclusion: Scores for the delirium-related knowledge and caregiving performance of family caregivers were low, while their caregiving stress levels were high due to their lack of knowledge and experience. This indicates the importance of delirium-related education for family members of patients with delirium and the necessity of developing nursing intervention programs to help manage stress and promote mental health among family caregivers.
Background: Percutaneous endoscopic gastrostomy feeding tube placement is multifactorial and considered a lifesaving mechanism, which leads to a host of thoughts and feelings that affect the decision-making experience. As people live longer and the population ages, these decisions often involve the caregivers who have their own experience and therefore can result in caregiver burden and anxiety. Methods: A descriptive phenomenological study was conducted to describe and understand the caregiver's decision-making experience regarding percutaneous endoscopic gastrostomy feeding tube placement in community-dwelling adults. Edmund Husserl's philosophical underpinnings were utilized in conjunction with Colaizzi's (1978) method of data analysis to maintain the rigor of the study. Sixteen adult caregivers of patients from six rehabilitation and skilled nursing facilities were interviewed using a semistructured interview guide. The audio-recorded interviews were transcribed and thematic analysis was conducted. Findings: The study results yield four main themes: "Survival... that was the determining factor"; "The doctor decided"; "More education... just make sure they understand"; and "It makes me very scared." Implications for practice, policy, and future research are thoroughly discussed.
Purpose: Family caregivers of a loved one with a life-limiting or terminal illness are often overwhelmed by, and underprepared for, their responsibilities. They often need help from family members and friends to provide comprehensive care. When death occurs, funerals and other death-related rituals bring family and communities together to honor the life and mourn the death of a loved one and provide needed support to family and caregivers. These collective rituals are often deeply rooted in culturally-bound values and can facilitate grief and help make sense about loss. Rituals act as bridge-building activities that allow people to organize and appraise emotions, information, and actions after a loss. With the emergence of the coronavirus disease-2019 (COVID-19) pandemic and the recommended restrictions to reduce infection and transmission, family members and caregivers are often faced with weighing options for honored rituals to help them grieve. Grieving during the pandemic has become disorganized. The purpose of this article is to provide case managers and other clinical staff with recommendations on guiding caregivers/families through safety precautions when a loved one dies either because of a life-limiting illness or from COVID-19 during the pandemic using guidelines from the Centers for Disease Control and Prevention (CDC). The authors also present information about complicated grief and ways to support coping with death and suggest safe alternatives to traditional death-related rituals and funerals in a COVID-19 era. Primary Practice Setting(s): Primary practice settings include home health care, hospice, hospital discharge planning, case management, and primary care. Findings/Conclusions: Precautions necessary in a COVID-19 era may add anxiety and stress to an already difficult situation of caring for loved ones at end-of-life and grieving with their loss. Utilization of CDC guidelines lessens the risk of infection while honoring loved ones' wishes and cultural traditions surrounding death and burial. Recognition of social and spiritual connections that comfort mourners must also be considered. Implications for Case Management Practice: Safety precautions are necessary for families and informal caregivers when death occurs during the COVID-19 era. We need to understand the various constraints of existing resources associated with the death of a loved one (capacity limitations at funeral home, delayed memorial services) and devise creative alternatives. We must acknowledge the increased potential for delayed/prolonged/complicated grief. Identification of resources to support caregivers/families in coping with grief and loss during the pandemic restrictions is needed—mobilizing support in novel ways.
Objectives: We examined patient and informal caregiver unmet needs to identify areas for targeted supportive care interventions and programs to enhance both patient and informal caregiver experience. Data Sources: A total of 30 patients who underwent ostomy surgeries for bladder or colorectal cancers and 13 informal caregivers participated in the study. Patients were enrolled at the Icahn School of Medicine at Mount Sinai between 2017 and 2018. Qualitative data were collected by individual interviews, audiotaped, and transcribed verbatim. Transcribed data were iteratively analyzed using Atlas.ti to explore patient and caregiver unmet needs. Results: Patients and informal caregivers reported having insufficient psychological preparation for ostomy surgeries, and very limited hands-on training on stoma care and utility of stomal appliances. Unmet psychological needs related to depression, anxiety, and distress caused by changes in body image and sexual, urinary, and bowel function were reported. Patients and caregivers also reported significant patient medical needs in the acute postoperative period including pain, fatigue, sleep disturbance, inflammation, and complications resulting in hospital readmissions. Colorectal cancer patients specifically experienced significant challenges with changes in diet and nutrition that contributed to ostomy care burden. Both patients and caregivers recommended seeking psychological and social support to enhance both patient and caregiver emotional adjustment to life after ostomies. Conclusion: Meeting patient and informal caregiver unmet informational and supportive care needs is imperative to improve their quality of life and adjustment. Implications for Nursing Practice: An effective supportive care plan should be designed and utilized in clinical care to improve ostomy patients’ and caregivers’ outcomes.
Objectives: We aimed to analyse the degree of carer burden and depressive symptoms in family carers of persons with age-related macular degeneration (AMD) and explore the factors independently associated with carer burden and depressive symptoms. Methods: Cross-sectional study using self-administered and interviewer-administered surveys, involving 96 family carer–care recipient pairs. Participants were identified from tertiary ophthalmology clinics in Sydney, Australia, as well as the Macular Disease Foundation of Australia database. Logistic regression, Pearson and Spearman correlation analyses were used to investigate associations of explanatory factors (family caregiving experience, carer fatigue, carer quality of life and care-recipient level of dependency) with study outcomes—carer burden and depressive symptoms. Results: Over one in two family carers reported experiencing mild or moderate-severe burden. More than one in five and more than one in three family carers experienced depressive symptoms and substantial fatigue, respectively. High level of care-recipient dependency was associated with greater odds of moderate-severe and mild carer burden, multivariable-adjusted OR 8.42 (95% CI 1.88 to 37.60) and OR 4.26 (95% CI 1.35 to 13.43), respectively. High levels of fatigue were associated with threefold greater odds of the carer experiencing depressive symptoms, multivariable-adjusted OR 3.47 (95% CI 1.00 to 12.05). Conclusions: A substantial degree of morbidity is observed in family carers during the caregiving experience for patients with AMD. Level of dependency on the family carer and fatigue were independently associated with family carer burden and depressive symptoms. Trial registration number: The trial registration number is ACTRN12616001461482. The results presented in this paper are Pre-results stage.
This commentary addresses barriers to care among older adults living with neurodiversity (ND), and their aging family carers in the context of the COVID-19 pandemic in Canada. Factors contributing to inequities are described and the significant negative consequences of current policy decisions on the social and mental health of older adults with ND and their aging family carers are highlighted. The commentary calls for a collective social work response that highlights the critical role of support and advocacy necessary to redress social exclusion.
Background: Informal (unpaid) carers are an integral part of all societies and the health and social care systems in the UK depend on them. Despite the valuable contributions and key worker status of informal carers, their lived experiences, wellbeing, and needs have been neglected during the COVID-19 pandemic. Methods: In this Health Policy, we bring together a broad range of clinicians, researchers, and people with lived experience as informal carers to share their thoughts on the impact of the COVID-19 pandemic on UK carers, many of whom have felt abandoned as services closed. Discussion: We focus on the carers of children and young people and adults and older adults with mental health diagnoses, and carers of people with intellectual disability or neurodevelopmental conditions across different care settings over the lifespan. Conclusion: We provide policy recommendations with the aim of improving outcomes for all carers.
Background: Preparing family caregivers for a patient's death is an integral component of quality end-of-life care, but temporal changes in emotional preparedness for death and its associations with caregivers' psychological well-being or quality of life (QOL) while providing end-of-life caregiving are under-researched. Our study was conducted to fill this gap. Methods: For this prospective, longitudinal study, the course of changes in adequate emotional preparedness for death and its associations with severe depressive symptoms and QOL were examined on 309 consecutive caregivers of terminally ill cancer patients by univariate and multivariate generalized estimating equation analyses, respectively. Results: Prevalence of adequate emotional preparedness for death was 57.2%, 61.3%, 54.4%, and 46.0% at 181-365, 91-180, 31-90, and 1-30 days before the patient's death, respectively, without significant changes as the patient's death approached. Adequate emotional preparedness for death was associated with caregivers' lower likelihood of severe depressive symptoms (adjusted odds ratio [95% CI]: 0.23 [0.16, 0.32], P < 0.001) but with their better QOL (adjusted β [95% CI]: 7.65 [6.38, 8.92], P < 0.001) in the patient's last year. Conclusions: Without active, effective clinical interventions to promote caregivers' emotional preparedness for death, they cannot automatically become more prepared for the patient's death over time. Adequate emotional preparedness for the patient's death benefits caregivers by its associations with a lower likelihood of depressive symptoms and better QOL. Supportive programs for caregivers of terminally ill cancer patients should focus on not only enhancing caregiving skills but also cultivating emotional preparedness for their relative's death to promote their psychological well-being and QOL.
Purpose: The purpose of this article is to present a clientcentered model of counseling that integrates information and personal adjustment counseling. Research has indicated that audiologists are more comfortable with counseling that is information based than with personal adjustment counseling. The prevailing model of diagnosis appears to be the medical model in which, first, a case history is taken, then testing and, finally, counseling. This model lends itself to audiologist as expert and the counseling as a separate entity based on information and advice. Further research has indicated parents retain little of the information provided in the initial examination because of their heightened emotions. Method: This article presents a client-centered model of diagnosis in which information is provided within an emotionally safe context, enabling the parents to express their feelings and have the ability to control the flow of information. The ultimate purpose of a client-centered model is to empower parents by making them active participants in the diagnostic process rather than passive recipients. Conclusion: The client-centered model has wide implications for the diagnostic process as well as for the training of students.
Background: Previous research has shown that care experiences influence the willingness for advance care planning (ACP). Family caregivers have increased contact with medical providers and procedures in the process of caring, and they have also witnessed the disability and suffering of patients. However, few studies have focused on family caregivers to understand their attitudes towards ACP. Objective: The aim of this cross-sectional study was to acknowledge family caregivers’ attitudes towards ACP and the related factors, especially care stress and experiences during the care process. Methods: We interviewed 291 family caregivers, and the demographics of the caregivers and care recipients, the clinical condition of care recipients, and the caregivers’ stress and care experiences were collected via anonymous questionnaires. Multiple logistic regression was performed to determine the factors associated with the attitudes towards ACP. Results: We found that the caregiver having private health insurance (p < 0.001) and a completed DNR (p < 0.001) and the experience of recipients admitted to the ICU (p = 0.019) are associated with caregiver’s positive attitudes towards ACP. The greater the stress of conflict within a family over care decisions, the more participants think that ACP is important (p = 0.011). Conclusion: It is suggested that (1) in a family-centered culture, a public strategy for promoting ACP could be to emphasize the benefits of ACP in reducing family conflicts, and (2) when people make financial plans, they should also be provided with information about ACP to enable them to form a more integral plan for their future.
Background: Family caregivers play an important role in providing long-term care for people with diabetes mellitus because it is a chronic disease that requires critical attention. This increases the burden of family caregivers which affects the health status of people with this disease. Therefore, the aim of this study is to determine the correlation between the burden of family caregivers and the health status of people with diabetes mellitus. Design and methods: This is an analytic observational study which was carried out in the work area of public health centers in Malang City using a cross-sectional design approach. The subjects used were 327 people with diabetes mellitus and their families were selected using the cluster sampling technique. Data collection was carried out using demographic data instruments, Zarit Burden Interview (ZBI) questionnaire to measure the burden of family caregivers and the SF 12 questionnaire to measure the health status of people with diabetes mellitus. Results: The results of the Spermank-Rank statistical test showed that there was a negative relationship between the burden of family caregivers and the health status of people with diabetes mellitus (p-value 0.000 and coefficient value of -0.333). Conclusions: It was concluded that the lesser the burden on family caregivers, the better the health status of people with diabetes mellitus. Therefore, interventions are needed to reduce the burden of family caregiver and improve the health status of patients with diabetes mellitus.
Objectives: This study aimed to examine the mediating effect of coping strategies on the relationship between family functioning and posttraumatic growth in family caregivers of people with dementia (PwD). Methods: A total of 124 family caregivers of PwD from a memory clinic were investigated from July to October 2017. Family functioning, coping strategies, and posttraumatic growth of family caregivers of PwD were measured. Data were processed using descriptive statistics, correlation analysis, regression analysis, and structural equation modelling. Posttraumatic growth was observed in family caregivers of PwD. Results: The caregiver's gender, relationship with the patient, and difficulty balancing financial income and expenditures in the past month, as well as disease severity of PwD, are significant predictors of posttraumatic growth. There were significantly positive correlations among posttraumatic growth, family functioning and positive coping strategies (P<0.01). Positive coping strategies exert a complete mediating effect between family functioning and posttraumatic growth (β = 0.49, P < 0.05). Conclusions: A model of the posttraumatic growth of family caregivers of PwD can be established, and the relevant mechanisms can be explored. Healthcare providers should pay attention to the family functioning of caregivers and take effective measures to provide them with positive coping strategies to promote their posttraumatic growth.
Background and Objectives: Existing studies typically explore the factor structure of coping strategies among dementia caregivers. However, this approach overlooks the fact that caregivers often use different coping strategies simultaneously. This study aims to explore the coping patterns of primary informal dementia caregivers in Singapore, examine their significant correlates, and investigate whether different patterns would affect the depressive symptoms of caregivers. Research Design and Methods: Two hundred eighty-one primary informal caregivers of persons with dementia (PWD) were assessed. Coping strategies were measured by the Brief Coping Orientation to Problem Experienced inventory. A latent class analysis was performed to explore caregivers' coping patterns, followed by logistic regressions to identify the significant correlates and the relationships between coping patterns and caregiver depression. Results: The latent class analysis suggested a three-class solution that was featured by the frequency and variety of coping strategies used by caregivers-high coping (36.3%), medium coping (37.7%), and low coping (26.0%). Factors influencing the coping patterns of our sample were mainly related to caregivers' individual resources such as personal characteristics and caregiving stressors like PWD's problematic behaviors and caregiving burden. Compared to caregivers in the low coping group, those in the medium coping group had significantly higher risks of potential depression. Discussion and Implications: The current study confirmed that there are distinct coping patterns among primary informal dementia caregivers, and caregivers with the low coping pattern had fewer depressive symptoms. Future research is needed to explore if coping patterns from our sample are generalizable to dementia caregivers elsewhere.
Aim and objective: This study aimed to identify the variables that contributed to Quality of Life (QoL) of Alzheimer's Disease (AD) caregivers, taking into consideration the caregiving context, stressors, role strains, and resources. Methods: The sample included 102 caregivers of AD patients who answered the following instruments: Depression, Anxiety and Stress Scale-21; Satisfaction with Social Support Scale; Revised Memory and Behavioral Problems Checklist; Family Communication and Satisfaction Scales; Spiritual and Religious Attitudes in Dealing with Illness; and Quality of Life in Alzheimer's Disease – Caregiver Version. Results: Caregivers who were employed, chose the caregiving role, and received help in caring showed better QoL. Also, being younger, less caregiving daily hours, caring for patients with less memory and behavior problems, lower distress, and family satisfaction predicted better QoL. Finally, spirituality was a moderator between family communication and QoL but not between family satisfaction and QoL. Conclusion: Caregiving-context variables (age, professional status, choosing to care, receiving help in the caregiving role and duration of daily care); role strains (family dissatisfaction); stressors (caregivers' distress and patients' memory and behavioral problems); and resources (spirituality) had an impact on caregivers' QoL emphasizing the adequacy of the Stress Process Model. Intervention should also focus on spirituality given its moderating role.
Background: The number of individuals experiencing Alzheimer's disease is increasing as the population ages. The majority of individuals experiencing Alzheimer's disease receive care from a family member, most often a spouse or adult child. Adult child caregivers have unique needs and life situations that put them at increased risk for caregiver burden and burnout. While both individual therapy and family therapy have been used with family caregivers, little scholarship has explored the role of couples therapy in improving caregiver outcomes. Methods: This article explores contributing factors to adult child caregiver burden and applies contextual therapy to treat these problems in couples therapy. We use a clinical vignette to illustrate the application of fairness, balance, loyalty conflicts, and constructive/destructive entitlement to caregiving. Conclusions: In all, we identify common dynamics in couples wherein one or both partners are primary caregivers for parents with Alzheimer's disease and provide clinical suggestions on how to assess and treat these challenges in couples therapy.
Background: COVID-19 has had an enormous impact on older people around the world. As family caregivers provide a good portion of the care for older people, their lives have been drastically altered by COVID-19 too. Our study is an in-depth exploration of the greatest concerns of family caregivers in the United States during COVID-19, as well as their perspectives on the benefits of caregiving during this global pandemic. Methods: We conducted in-depth interviews with a diverse sample of 52 family caregivers in the United States between May and September of 2020 over video conferencing using a semi-structured interview guide. Thematic analysis was conducted to ascertain our participants’ perceptions. Findings: Caregiver’s concerns were organized into six main themes, including social isolation, decline in mental health, decline in physical and cognitive functioning, keeping their family members safe from COVID-19, lack of caregiving support, and caregiving stress. The themes related to the benefits of caregiving during COVID-19 included: enjoyed the slower pace, increased time to spend together, deepened relationships, recognizing the resilience of family members, and caregiving innovations. Conclusions: Our in-depth study helps social workers understand the nature of caregiving stress during COVID-19, as well as the positive aspects of caregiving, even during a global pandemic.
Background: As the population rapidly ages, a growing number of families are engaging in care for individuals living with Alzheimer's disease and related dementias (ADRD). The perceived challenges and burdens that face informal caregivers are enormous. Objective: The objective of this study was to 1) explore from the family caregivers' perspective, the daily lives of individuals living with ADRD, and the challenges family caregivers encounter when caring for a family member with ADRD; and 2) to develop a comprehensive model with the endeavor to improve care for individuals with ADRD and their family caregivers. Methods: Posts were extracted from the ALZConnected online caregiving forum in May 2019. Guided by a triangular model focused on Caregiver, Individual with ADRD, and Context of Care, two researchers independently analyzed 654 posts with a combination of deductive and inductive thematic analysis approach. Researchers all agreed on finalized codes and themes. Results: Thematic analysis resulted in four themes: Individual with ADRD, Caregiver, Dynamic between Caregiver and Individual with ADRD, and Context of Care. The most frequently discussed topics among caregivers were informational and emotional support for caregivers, and the capabilities and functioning of individuals with ADRD. Conclusion: Online forums provide a valuable platform for caregivers to support each other informationally and emotionally, share care strategies, and navigate caregiving burdens. An expanded model was derived to support a comprehensive and dynamic approach to improve care for both caregivers and individuals with ADRD. The unique nature of the caregiver forum data is worthy of further data mining using a novel analysis approach.
Purpose: The purpose of this study was to provide the comprehensive factors affecting the sleep quality in family caregivers of patients with dementia in South Korea, including patient and caregiver-related factors. Methods: The participant were a total of 156 family caregivers who live with patients with dementia in South Korea. Patient and caregiver-related factors were measured using tools with high reliability. Data collection was performed from May to August 2019, and data were analyzed using descriptive analysis, t-test, ANOVA, Pearson's correlation coefficients, and multiple regression with the SPSS/21.0 program. Results: The significant factors affecting family caregivers’ sleep quality were their depression (β=.52, p<.001) and their education (β=.23, p=.019). Conclusion: There is a need to monitor caregivers’ depression and sleep quality. Future studies, biomarker to monitor caregivers’ sleep quality to achieve objective evidence. There is a need to provide additional education programs to improve the understanding around caregivers' sleep quality especially for caregivers with low level of education.
Background: Caregivers of children with cystic fibrosis (CF) are at risk for psychosocial difficulties, which has been related to poorer child well-being and medical adherence. Methods: The present study utilized the National Survey of Children's Health (NSCH) to examine self-reported differences in caregiver functioning among a matched sample of caregivers of youth with CF, asthma, and healthy controls (N = 114). Results: CF caregivers reported poorer mental health and more parenting aggravation. Among CF caregivers, poorer caregiver mental health predicted less family resilience, which in turn, predicted more parenting aggravation. Conclusions: Findings have implications for prevention screening and brief interventions within pulmonary medicine.
Purpose: To compare the anxiety, depression and explore their relationship to quality of life (QoL) among adult acute leukemia (AL) patients and family caregivers (FCs) in China. Methods: A multicenter cross-sectional study was conducted from April 2017 to January 2018. The sample comprised 207 dyads of adult AL patients and FCs. The participants were required to complete socio-demographic information and the Hospital Anxiety and Depression Scale (HADS). The Functional Assessment of Cancer Therapy-Leukemia (FACT-Leu, only for patients) and MOS 36-item Short-Form Health Survey (SF-36, only for FCs) were used to measure QoL. Results: The mean scores of anxiety and depression for AL patients were 7.89 ± 3.85 and 7.18 ± 4.23, respectively. For FCs, the mean scores of anxiety and depression were 9.96 ± 3.73 and 8.64 ± 3.74. In this study, adult AL Patients' sex, patients' depression score, whether patients achieving a CR or not, education, FCs' depression score, patients' social/family well-being and emotional well-being were significantly associated with patients' anxiety or depression (p < 0.05). For FCs, depression was significantly related to the physical component summary (β = 0.127, p = 0.008). There were significant differences in anxiety (t = − 5.92, p < 0.001) and depression (t = − 4.19, p < 0.001) between patients and FCs. Conclusions: AL patients' FCs showed higher score of anxiety and depression than that of patients. The psychological health may have a potential relationship between AL patients and their FCs. Healthcare professionals can conduct family-center interventions to improve mental health and QoL of AL patients and FCs.
Background: Being an informal carer of a person with dementia (PwD) can have a negative effect on the carer’s health and quality of life, and spouse carers have been found to be especially vulnerable. Yet relatively little is known about the care provided and support received by spouse carers. This study compares spouse carers to other informal carers of PwDs regarding their care provision, the support received and the psychosocial impact of care. Methods: The study was a cross-sectional questionnaire-based survey of a stratified random sample of the Swedish population aged 18 or over. The questionnaire explored how much care the respondent provided, the support received, and the psychosocial impact of providing care. Of 30,009 people sampled, 11,168 (37.7 %) responded, of whom 330 (2.95 %) were informal carers of a PwD. Results: In comparison to non-spouse carers, spouse carers provided more care more frequently, did so with less support from family or the local authority, while more frequently experiencing negative impacts on their social life and psychological and physical health. Spouse carers also received more carer support and more frequently experienced a closeness in their relationship with the care-recipient. Conclusions: Spouse carers of PwD differed from non-spouse carers on virtually all aspects of their care situation. Policy and practice must be more sensitive to how the carer-care-recipient relationship shapes the experience of care, so that support is based on an understanding of the individual carer’s actual needs and preferences rather than on preconceptions drawn from a generalised support model.
Background: Effective communication in support of clinical decision-making is central to the pediatric cancer care experience for families. A new laboratory derived pharmacogenetic test (LDT) that can diagnose difficult-to-treat brain cancers has been developed to stratify children based on their ability to respond to available treatment; however, the potential implementation of the LDT may make effective communication challenging since it can potentially remove the option for curative treatment in those children identified as non-responders, i.e. those with a catastrophic diagnosis. Objective: We solicited the perspectives of parents of children with difficult-to-treat brain cancer on communication preferences surrounding the potential implementation of the LDT in standard care using deliberative stakeholder consultations. Methods: Eight bereaved parents of children who succumbed to difficult-to-treat brain cancer, and four parents of children currently undergoing treatment for similar cancers attended separate small-group deliberative consultations – a stakeholder engagement method that enables the co-creation of recommendations following the consideration of competing arguments and diverse opinions of parents with different experiences. In the small-group consultations (Phase I), parents discussed four questions about potential communication issues that may arise with the LDT in practice. In Phase II, a total of five parents from both stakeholder groups (4 bereaved and 1 in current treatment) attended a consultation, known as the 'mixed' consultation, with the purpose of co-developing concrete recommendations for implementation of the LDT. Results: Explaining the risks, benefits, and accuracy of the LDT were considered essential to parents. Once an LDT-based diagnosis/prognosis can be made, parents valued honesty, empathy, and clarity in communication. Parents also requested that all results and treatment options be presented to them in measured doses, and in an unbiased manner over the course of several meetings. This communication strategy allowed sufficient time to understand and accept the diagnosis/prognosis, particularly if it was catastrophic. Continuous access to the appropriate psychological and social support or counselling at and post-diagnosis was also strongly recommended. Conclusions: Deliberants co-created family-centered recommendations surrounding communication issues of the LDT, providing guidance to pediatric oncologists that could implement the test in practice.
Background: Population ageing, an emphasis on home-based care of palliative patients and policies aimed at prolonging participation in the labour market are placing a growing demand on working family caregivers. This study aimed to provide insight into experiences with combining paid work and family care for patients at the end of life, factors facilitating and hindering this combination, and support needs. Method: Semi-structured interviews were held between July 2018 and July 2019 with 18 working family caregivers of patients with a life-threatening illness who were living at home. Transcripts were analysed following the principles of thematic analysis. Results: Some family caregivers could combine paid work and family care successfully, while this combination was burdensome for others. Family caregivers generally experienced a similar process in which four domains — caregiver characteristics, the care situation, the work situation and the context — influenced their experiences, feelings and needs regarding either the combination of paid work and care or the care situation in itself. In turn, experiences, feelings and needs sometimes affected health and wellbeing, or prompted caregivers to take actions or strategies to improve the situation. Changes in health and wellbeing could affect the situation in the four domains. Good health, flexibility and support at work, support from healthcare professionals and sharing care tasks were important in helping balance work and care responsibilities. Some caregivers felt ‘sandwiched’ between work and care and reported physical or mental health complaints. Conclusions: Experiences with combining paid work and family care at the end of life are diverse and depend on several factors. If too many factors are out of balance, family caregivers experience stress and this impacts their health and wellbeing. Family caregivers could be better supported in this by healthcare professionals, employers and local authorities.
Background: Informal caregivers of persons with dementia often experience elevated levels of caregiving burden. However, existing studies tend to use a variable-centered approach to explore it. This study aims to understand the caregiving burden of informal caregivers of persons with dementia in Singapore through a combination of variable-centered and person-centered analytical approaches, and explore the correlates of identified factors and latent classes of caregiving burden. Methods: Zarit Burden Interview was used to gauge the caregiving burden of 282 primary informal caregivers of persons with dementia recruited through convenience sampling in Singapore. Factor analysis and latent class analysis were conducted to identify the latent factors and the latent classes of Zarit Burden Interview, followed by multiple linear regression and multinomial logistic regression to explore their significant correlates. Results: The analyses suggested a 17-item 3-factor structure for Zarit burden interview and three mutually exclusive caregiving burden classes. Regression analyses found that caregiving related variables especially care recipients’ memory and behaviour problems were correlated with both the factors and latent classes of caregiving burden. Conclusions: The combination of these two approaches suggests that caregivers experiencing higher burden on one domain are likely to experience higher burden on the other two domains. This further supports the point that more attention should be given to caregivers who experience an overall high burden. Future research could explore the generalizability of our findings among caregivers elsewhere and explore the type of support needed by caregivers, especially those experiencing high burden.
Background: This article explores the lived experience of informal caregivers in cancer care, focusing on the perceived burden and needs of individuals seeking support from an informal group for next of kin. Methods: A total of 28 individuals who were closely related to a patient with cancer participated in focus group interviews. Findings: Three themes were identified: setting aside one's own needs, assuming the role of project manager, and losing one's sense of identity. Together they form the framing theme: being co-afflicted. Conclusions: The characteristics of informal caregivers are shown to be similar to those of people with codependency, motivating development of targeted interventions from this perspective.
Background: Virtual Learning Collaboratives (VLC), learning communities focused on a common purpose, are used frequently in healthcare settings to implement best practices. Yet, there is limited research testing the effectiveness of this approach compared to other implementation strategies. This study evaluates the effectiveness of a VLC compared to Technical Assistance (TA) among community oncology practices implementing ENABLE (Educate, Nurture, Advise, Before Life Ends), an evidence-based, early palliative care telehealth, psycho-educational intervention for patients with newly diagnosed advanced cancer and their caregivers. Methods: Using Reach, Effectiveness, Adoption, Implementation, Maintenance (RE-AIM) and Proctor’s Implementation Outcomes Frameworks, this two-arm hybrid type-III cluster-randomized controlled trial (RCT) will compare two implementation strategies, VLC versus TA, among the 48 National Cancer Institute Community Oncology Research Program (NCORP) practice clusters that have not historically provided palliative care to all patients with advanced cancer. Three cohorts of practice clusters will be randomized to the study arms. Each practice cluster will recruit 15–27 patients and a family caregiver to participate in ENABLE. The primary study outcome is ENABLE uptake (patient level), i.e., the proportion of eligible patients who complete the ENABLE program (receive a palliative care assessment and complete the six ENABLE sessions over 12 weeks). The secondary outcome is overall program implementation (practice cluster level), as measured by the General Organizational Index at baseline, 6, and 12 months. Exploratory aims assess patient and caregiver mood and quality of life outcomes at baseline, 12, and 24 weeks. Practice cluster randomization will seek to keep the proportion of rural practices, practice sizes, and minority patients seen within each practice balanced across the two study arms. Discussion: This study will advance the field of implementation science by evaluating VLC effectiveness, a commonly used but understudied, implementation strategy. The study will advance the field of palliative care by building the capacity and infrastructure to implement an early palliative care program in community oncology practices. Trial registration Clinicaltrials.gov. NCT04062552; Pre-results. Registered: August 20, 2019. https://clinicaltrials.gov/ct2/show/NCT04062552?term=NCT04062552&draw=2&rank=1
Background: The association between caregiver burden and the physical frailty of older adults has been the object of previous studies. The contribution of patients’ dispositional optimism on caregiver burden is a poorly investigated topic. The present study aimed at investigating whether older adults’ multidimensional frailty and optimism might contribute to the burden of their family caregivers. Methods: The Caregiver Burden Inventory was used to measure the care-related burden of caregivers. The multidimensional frailty status of each patient was evaluated by calculating a frailty index, and the revised Life Orientation Test was used to evaluate patients’ dispositional optimism. The study involved eighty family caregivers (mean age 64.28 ± 8.6) and eighty older patients (mean age 80.45 ± 7.13). Results: Our results showed that higher frailty status and lower levels of optimism among patients were significantly associated with higher levels of overall burden and higher burden related to the restriction of personal time among caregivers. Patients’ frailty was additionally associated with caregivers’ greater feelings of failure, physical stress, role conflicts, and embarrassment. Conclusion: Understanding the close connection between patient-related factors and the burden of caregivers appears to be an actual challenge with significant clinical, social, and public health implications.
Background: COVID-19 has caused great changes in all aspects of life which affected all people especially vulnerable groups such as children with disabilities (CWD) and their families. Objective: This study aimed to examine the challenges facing caregivers of CWD during the pandemic, and to explore these challenges from various physical, social, psychological, and financial aspects. Methods: A cross-sectional design was conducted in Palestine, a total of 130 caregivers of CWD completed a survey consisting of demographic and clinical characteristics questionnaire and the short version of the burden scale for family caregivers (BSFC-s) between March and May 2021. Results: Most of the caregivers were mothers (76.9%), the mean age of the children was (6.09 ± 3.43 years). The majority (88.5%) of the caregivers felt physically exhausted, about (75.4%) had decreased living standards, and (86.2%) indicated that caregiving is taking their strength. A high burden score was recorded, the mean BSFC-s score was 20.17 ± 5.57. Significant differences in BSFC-s scores were recorded based on the type of disability, and child’s ability to take care of oneself, P <.05. The total scores of the BSFC-s were positively correlated with the physical, social, psychological, and financial challenges facing the caregivers (P <.001). Conclusions: COVID-19 has caused increased burdens on the caregivers of CWD and a negative impact on the child’s mobility accompanying a lack of access to health and rehabilitation services. Vital factors are to be considered in developing strategic health and rehabilitative plans for promoting better care for caregivers and their CWD during lockdown restrictions time.
Background: Consistent with global trends, population aging in South Korea is necessitating increasing admissions to intensive care units (ICU). Design: This integrative review describes the challenges experienced by family caregivers of ICU patients in South Korea and evaluates relevant intervention studies. Using Whittemore and Knafl's methods, we identify and synthesize findings from 20 (14 descriptive and 6 experimental design) articles and evaluate study quality. Findings: South Korean ICU family caregivers reported challenges such as feelings of powerlessness and vulnerability, difficulty in maintaining their own health and well-being, and mixed feelings regarding patients' transition to the general ward. Intervention studies, which were based on quasi-experimental design, examined modified visiting hours, information provision strategies, nurse-led transitional care programs, and educational support. Conclusions: Findings highlight the current state of the science in this topic area in South Korea. Future studies should use more robust methods, such as longitudinal cohort studies and randomized controlled trials.
Study design: Qualitative exploratory study. Objectives: To explore the lived experience of SCI caregivers, with a focus on the challenges of their role. Setting: Caregivers of people with SCI living in the community in Switzerland. Methods: Data were collected through semi-structured interviews. Thematic analysis was performed. Results: The sample included 22 participants (16 women, 15 life partners) with a mean age of 61 years who had been caregivers for an average of 18 years. Caregiving in SCI seemed to be characterized by two phases. The first phase was relatively short and was central to becoming a caregiver; it was marked by challenges related to adjusting to the role of caregiver (e.g., dealing with shock, feeling unprepared). The second phase is lifelong and is characterized by a number of recurrent challenges related to balancing caregiving and personal life (e.g., having to prioritize caregiving over personal wishes, negotiating tasks and workload). Challenges related to lacking appropriate housing, facing financial uncertainty and dealing with bureaucracy were noted during both phases. Caregivers had to deal with these challenges to stay in step with life changes and newly emerging needs. Conclusions: Informal caregivers have a major role in supporting people with SCI. But their needs are not static. Any strategy to empower them has to adapt to an evolving role characterized by multiple tasks and challenges. A functional relationship between caregivers and care recipients is based on the recognition of their individualities and the different phases of adaptation, which is also an enriching process.
Whether a planned or unexpected admission, having a relative in the intensive care unit (ICU) can be a time of turmoil and extreme stress for family members as well as patients. Research has identified the increased risk relatives face of developing symptoms of post-traumatic stress disorder (PTSD), which can be felt long after their loved one has been discharged from the ICU. Family dysfunction as well as physical, emotional, spiritual, and financial distress have also been reported as adverse outcomes attributable to a family member's admission to the ICU. Before strategies can be implemented to address or mitigate the risk of adverse outcomes developing, it is imperative to further understand the family members’ experience and needs. Using meta-aggregative methods, a qualitative synthesis published in this issue of JBI Evidence Synthesis reports on the multifaceted needs of family members at this time, and provides recommendations for how qualitative findings can be translated to practice environments.
Background: This study is part of a broader phenomenological study on the experiences of family caregivers and their care recipients. There is a general paucity of research on the experiences of primary and secondary caregivers, and the negative impact of elderly care on caregivers in the urban poor settings in Ghana. This study explored primary and secondary caregivers’ challenges and coping strategies in the urban poor context in Accra, Ghana. Methods: This study was conducted in Ga Mashie. Thirty-one caregivers were interviewed. A phenomenological analysis was conducted using NVivo 10. Findings: Primary and secondary caregivers experienced economic, physical, social, and psychological burdens. Also, caregivers used spirituality and perseverance to cope with their challenges. Conclusions: The findings demonstrate that caregivers’ challenges varied by type of caregiver. Researchers and policymakers should consider the type of caregiver when designing interventions to mitigate the negative impacts of family caregiving on caregivers.
Introduction: The present pilot study examined to what extent the COVID-19 lockdown affected the behavioral and psychological symptoms of dementia (BPSD) in people with dementia and worsened their family caregivers’ distress. The associations between changes in the BPSD of relatives with dementia (RwD) and in their caregivers’ distress, and sense of social and emotional loneliness, and resilience were also investigated. Materials and methods: Thirty-five caregivers of RwD attending formal healthcare services before the lockdown volunteered for the study, and were interviewed by phone during the lockdown. Caregivers completed the NeuroPsychiatric Inventory (NPI) to assess their care recipients’ BPSD and their own distress, and two questionnaires assessing their social and emotional loneliness, and their resilience. Results: No clear changes emerged in either the BPSD of the RwD or the caregivers’ distress during lockdown compared with before the pandemic. Caregivers reporting more frequent and severe BPSD in their RwD before the lockdown scored higher on emotional loneliness. Those reporting more frequent and severe BPSD under lockdown, especially men and those taking care of RwD with more advanced dementia, scored higher on both social and emotional loneliness. A significant negative correlation also emerged between caregivers’ resilience and changes in their level of distress due to the lockdown, with female caregivers reporting greater resilience. Discussion: Our findings offer preliminary insight on the effects of loneliness and resilience, and on the influence of individual characteristics on the experience and consequences of informal caregiving for RwD in times of restrictions imposed by a pandemic.
Aims: The aim of this study was to explore the views of mental health professionals regarding the needs of the informal caregivers of patients with chronic psychotic syndrome. Design: A qualitative research design was used. The sample consisted of 12 mental health professionals selected by a purposive sampling strategy. Data were collected through semistructured, face to face interviews. Framework analysis was used to analyze qualitative data and establish main themes and subthemes. Findings: Three main themes emerged namely, (i) impact of caring on caregivers’ lives, (ii) caregivers’ needs, and (iii) recommendations for better care. Informal caregivers’ needs were conceptualized into subthemes within the main themes. Caregivers’ increased responsibilities of caring for their relatives, the impact on their mental and physical health status and the restrictions in their social and professional life were revealed. Conclusions: Targeted health interventions and social policy planning are recommended for supporting informal caregivers and improving patient care.
Introduction: Caring for a patient with end‐stage renal disease undergoing in‐centre haemodialysis can be a stressful experience, likely to involve significant burden. Within the context of the new coronavirus pandemic, these patients are highly vulnerable to infection by COVID‐19, which might increase the care demands and burden of family caregivers. Aim: This study aimed to explore the subjective experiences of family caregivers of non‐COVID‐19 patients with end‐stage renal disease undergoing in‐centre haemodialysis during the COVID‐19 lockdown. Study design: A qualitative study was performed with a purposive sample. Methods: Semi‐structured telephone interviews were conducted with 19 family caregivers (50.7 ± 14 years old) of patients undergoing in‐centre haemodialysis in April 2020. Findings Four major themes were identified: (1) emotional distress; (2) changes in caregiving responsibilities; (3) educational and supportive needs; and (4) coping strategies to deal with the outbreak and with the lockdown. Discussion: The findings suggest that family caregivers of patients undergoing in‐centre haemodialysis have to manage several additional care responsibilities due to COVID‐19 lockdown. The dialysis team should consider the development of educational and supportive interventions to meet family caregivers’ needs, mitigate emotional distress, fears and concerns, and prevent caregiver burden during the COVID‐19 pandemic.
Aims and objectives: To understand the experiences and support needs of informal caregivers of patients with chronic obstructive pulmonary diseases chronic obstructive pulmonary disease who return home following an acute exacerbation. Background: The presence of an informal caregiver is important to provide practical and emotional support after an episode of acute exacerbation of chronic obstructive pulmonary disease. However, caregiving in such circumstances can be challenging and stressful. Design: Phenomenology. Methods: This is a phenomenological study based on semi‐structured interviews with sixteen primary caregivers of chronic obstructive pulmonary disease patients. Interview data were analysed using Colaizzi's descriptive analysis framework, to identify significant themes and sub‐themes. Data were collected between April‐December 2017 in a Teaching Hospital in Italy. The study was designed and reported following the COREQ guidelines and checklist. Results: Analysis elicited five themes embracing various aspects of the caregivers' lived experiences: (a) a home disrupted, (b) living with constant vigilance and anxiety, (c) feeling the need to escape (d) self‐justifications for caregiving role/duty, and (e) feeling abandoned by professionals. Conclusions: Our results show that carers experience a range of difficulties when caring for their relative at home with chronic obstructive pulmonary disease. Some of these are linked to the physical disruption of their home but many are linked to feelings of inability to cope and the psycho‐social impact of the caring role. The study also shows how participants felt unsupported by professionals. Focused support for carers is required to enable them to meet these challenges. Relevance to clinical practice: Healthcare professionals should be trained to provide technical and psychological support to caregivers especially during the phases of disease that may involve episodes of exacerbation. Home care and continuity of care can work if there is excellent communication and collaboration between healthcare professionals and caregivers. Developing appropriate support for family caregivers is essential to address the problems they can face.
Aims: Epidermolysis Bullosa (EB) is a rare genetic disorder characterised by recurrent skin blistering. Wound care and nursing are critical to everyday lives of EB patients. The aim of this review was to identify the support needs of parents of a child with EB and to assess the impact EB has on the family unit, irrespective of subtype of condition severity. Methods: We conducted a scoping review comprising 11 studies (2005-2021) to examine the research literature related to the support needs of parents with a child with EB, and the impact on family unit wellbeing. Results: Most common needs identified were emotional needs, followed by practical needs, social needs and physical needs. Many parents also reported a lack of informational and psychological support. Common findings included emotional stress, lack of respite and physical strain on caring responsibility, financial stress, guilt and impact on relationships and family unit. Conclusions: Few studies exist that explore the support needs of parents of a child with EB. More attention should be paid to the support needs of parents to provide adequate care to those diagnosed with EB as well as their families.
Background: Family caregivers of persons with dementia often feel unprepared for end-of-life and preparedness predicts caregiver outcomes in bereavement. Existing questionnaires assessing preparedness have limitations. A multi-dimensional questionnaire assessing family caregiver preparedness for the end-of-life of persons with dementia is needed to identify caregivers at risk for negative outcomes in bereavement and evaluate the quality of strategies within a palliative approach. Aim: To develop a multi-dimensional questionnaire titled 'Caring Ahead' to assess feelings of preparedness for end-of-life in family caregivers of persons with dementia. Design: A mixed methods, sequential design employed semi-structured interviews, a Delphi-survey and pilot-testing of the questionnaire, June 2018 to July 2019. Setting/population: Participants included five current and 16 bereaved family caregivers of persons with symptoms advanced dementia from long-term care homes in Ontario, Canada; and 12 professional experts from clinical and academic settings in Canada, Europe, United States. Results: Interviews generated three core concepts and 114 indicators of preparedness sampling cognitive, affective and behavioural traits in four domains (i.e., medical, psychosocial, spiritual, practical). Indicators were translated and reduced to a pool of 73 potential questionnaire items. 30-items were selected to create the 'Caring Ahead' preparedness questionnaire through a Delphi-survey. Items were revised through a pilot-test with cognitive interviewing. Conclusions: Family caregivers' feelings of preparedness for end-of-life need to be assessed and the quality of strategies within a palliative approach evaluated. Future psychometric testing of the Caring Ahead questionnaire will evaluate evidence for validity and reliability.
Objective: To correlate caring ability with overburden, stress and coping of urban and rural family caregivers of patients undergoing cancer treatment. Method: Crosssectional study, carried out in a referral hospital for cancer treatment, with urban and rural caregivers who responded the following instruments: questionnaire of sociodemographic characterization of the caregiver and the care provided, Perceived Stress scale, Burden Interview scale and Brief COPE. Pearson’s correlation test was used for statistical analysis, with a significance level ≤5%. Results: A total of 163 urban caregivers and 59 rural caregivers participated in the study. Between the caring ability and stress, a negative and moderate correlation was found in rural caregivers. In the relationship between the caring ability and the overburden, there was a statistically significant correlation in urban caregivers in the interpersonal relationship and perception of self-efficacy factor. Between coping and the caring ability, a positive and moderate correlation was identified in coping focused on the problem in the knowledge dimension in urban caregivers. Conclusion: Urban caregivers had greater intensity of overburden and coping focused on the problem in relation to the caring ability.
Background: Informal caregiving for people with dementia can negatively impact caregivers’ health. In Asia-Pacific regions, growing dementia incidence has made caregiver burnout a pressing public health issue. A cross-sectional study with a representative sample helps to understand how caregivers experience burnout throughout this region. We explored the prevalence and contributing factors of burnout of caregivers of community-dwelling older people with dementia in Hong Kong (HK), China, and New Zealand (NZ) in this study. Methods: Analysis of interRAI Home Care Assessment data for care-recipients (aged ≥65 with Alzheimer’s disease/other dementia) who had applied for government-funded community services and their caregivers was conducted. The sample comprised 9976 predominately Chinese in HK and 16,725 predominantly European in NZ from 2013 to 2016. Caregiver burnout rates for HK and NZ were calculated. Logistic regression was used to determine the adjusted odds ratio (AOR) of the significant factors associated with caregiver burnout in both regions. Results: Caregiver burnout was present in 15.5 and 13.9% of the sample in HK and NZ respectively. Cross-regional differences in contributing factors to burnout were found. Care-recipients’ ADL dependency, fall history, and cohabitation with primary caregiver were significant contributing factors in NZ, while primary caregiver being child was found to be significant in HK. Some common contributing factors were observed in both regions, including care-recipients having behavioural problem, primary caregiver being spouse, providing activities-of-daily-living (ADL) care, and delivering more than 21 h of care every week. In HK, allied-health services (physiotherapy, occupational therapy and speech therapy) protected caregiver from burnout. Interaction analysis showed that allied-health service attenuates the risk of burnout contributed by care-recipient’s older age (85+), cohabitation with child, ADL dependency, mood problem, and ADL care provision by caregivers. Conclusions: This study highlights differences in service delivery models, family structures and cultural values that may explain the cross-regional differences in dementia caregiving experience in NZ and HK. Characteristics of caregiving dyads and their allied-health service utilization are important contributing factors to caregiver burnout. A standardized needs assessment for caregivers could help policymakers and healthcare practitioners to identify caregiving dyads who are at risk of burnout and provide early intervention.
Background: Individuals who care for aging parents or relatives often experience caregiving burden, which is associated with various negative psychological outcomes. During the current COVID‐19 pandemic, the conflict between caring for older relatives and taking the necessary personal precautions against infection may be exacerbated among individuals who belong to social groups, which perceive caring for others as an indispensable cultural construct. Accordingly, the current study examined whether feeling a part of one's community moderates the association between caregiving burden and depressive symptoms among the ultra‐orthodox society in Israel. Methods: A convenience sample of 358 ultra‐orthodox participants was collected (age range 30–70; M = 49.50, SD = 10.24), all of whom completed scales assessing caregiving burden, sense of community, and depressive symptoms. Results: Results demonstrated that high caregiving burden and low sense of community were associated with increased depressive symptoms. Moreover, sense of community moderated the caregiving burden‐depressive symptoms link, as the latter positive association was significant only among individuals reporting low levels of sense of community. Conclusions: The discussion highlights the importance of sense of community as a beneficial personal and social factor, which mitigates the negative psychological consequences of caregiving burden among such societies.
Background: Family caregivers’ role in cancer and stroke care is overly burdensome. Studies have considered burden and predictors of burden but the influence of caregiving burden on health - promoting behaviours among cancer and stroke family caregivers in Nigeria is scarce. The purpose of this study was to determine the influence of caregivers’ perceptions of burden and health-promoting behaviours on informal caregivers of cancer/ stroke patients attending tertiary care facilities in South- South Nigeria. Methods: A descriptive cross-sectional survey was employed among 410 purposively selected cancer/ stroke patients’ family caregivers in tertiary care facilities, South- South Nigeria. A standardized Zarit burden interview scale and structured questionnaire were used to measure burden and determine health-promoting behaviours respectively. Descriptive (means, standard deviation and percentages) and inferential (ANOVA) statistics with a Fisher’s protected t- test at 0.05 level of significance were used for data analysis. Results: The respondents experienced severe (F= 14.02; P= 0.810) burden in caregiving to cancer/ stroke patients. The influence of health- promoting behaviours (primary, secondary and tertiary preventions) among caregivers of cancer/ stroke is significantly high in the tertiary care facilities, South-South, Nigeria. Conclusions: aregivers of cancer and stroke patients experienced severe levels of burden and health-promoting-behaviours in terms of prevention at the primary, secondary and tertiary activities were significantly high among respondents. This calls for knowledge mobilization and dissemination in Nigeria and beyond.
Background: Caregivers of children with neurodevelopmental disorders play a central role during the rehabilitation and education processes, but they have an increasing risk of psychosocial problems even if the literature is not so agreed upon the specific and predisposing factors to that. The aim of this study was to examine possibly differences of burden levels in an Italian sample of principal caregivers of children with different kinds of neurodevelopmental disorders and to investigate the possible links between some clinical and sociodemographic variables and the levels of caregiver’s burden. Methods: 105 caregivers of school-aged children with neurodevelopmental disorders were included in the study and completed three online questionnaires (General Questionnaire, Caregiver Burden Inventory, Zarit Caregiver Burden Scale). Results: Results highlighted that about the half of caregivers show from moderate to high levels of stress, but parents of children with Autism Spectrum Disorder and Intellectual Disability show greater difficulties than parents of children with Attention-Deficit Hyperactivity Disorder, Language and/or Learning Disorder, and Developmental Coordination Disorder. Moreover, it was evident a negative correlation between the burden levels and the age of children, but also a direct correlation between the burden levels and the weekly hours of rehabilitation. Conclusions: These findings show that severity of caregiver’s burden is dependent by the type of neurodevelopmental disorder and suggest that an ecological and family-centred approach is necessary to guarantee the life health developmental course of these children.
Background: Although caregiver identity theory asserts there is no single generic caregiver identity, comparisons on demographic characteristics and burden of care have not been made among caregivers of persons with various health conditions. Methods: Using social media to access study participants, this cross-sectional study of 234 family caregivers of persons with various health conditions examined their demographic characteristics (age, gender, and race/ethnicity) and burden of care (daily care hours and caregiving years) using online data collection. Results: Nine groups of caregivers were formed by the care recipient’s health condition. Caregiver groups were similar in gender (95% women) and race/ethnicity (88% white), and differed on age (F=4.74; p<.001) daily care hours, and caregiving years (F’s=2.76 and 2.84; p<.01). Conclusions: The findings suggest that caution is needed when recruiting caregivers through social media as the sample may not represent all caregivers. However, differences by care recipient condition on age and burden of care warrant further consideration.
Background: Caregivers are a source of support for family members with disabilities. However, caregivers are at risk for caregiver burden, which can erode self-care skills and lead to poor physical and mental health outcomes. Caregiver Wellness Self-Care, developed to address that risk, is a 5-week group program in which participants learn about strategies that cultivate their inner resources, while connecting with others for support. Wellness, self-care, mindfulness, and yoga-based information and practices are taught in the sessions and included in participant handouts. Self-reflection and planning activities with facilitated discussions further support awareness and personal transformation. Methods: Designed by and for people providing care to an adult family member with a mental health disorder and a developmental/intellectual disability, the program was piloted three times. Findings: The current article describes the development of the program through caregiver involvement, participant and facilitator feedback, and implications for future efforts to build caregiver wellness self-care skills. Implications for nurses are highlighted.
Purpose: To assess the burden among caregivers of patients with heart failure (HF) with left ventricular ejection fraction (LVEF) ≤ 60%. The burden by New York Heart Association (NYHA) functional class was also characterized. Patients and Methods: A cross-sectional study was conducted in France, Germany, Italy, Spain, and UK from June to November 2019. Patient record forms were completed by 257 cardiologists and 158 general practitioners for consecutive HF patients. Caregivers who accompanied the patient to their consultation completed a caregiver self-completion survey voluntarily, which included the Family Caregiver Quality of Life Questionnaire (FAMQOL) and 5-level 5-dimension EuroQol questionnaire (EQ-5D-5L). Results: We analyzed 361 caregivers of patients with HF (NYHA class I, n=41; II, n=212; III IV, n=108). Mean age of caregivers was 58.8 years (NYHA I/II/III–IV: 59.1/60.8/54.6 years; p=0.0029), with majority being females (73.1%). Caregivers spent on average 19.8 hours/week caring for a HF patient, which increased with increase in NYHA class (I/II/III–IV: 11.8/18.1/25.9 hours/week; p=0.0094). Caregivers (24.1%) reported providing emotional support/encouragement to patients as the most troublesome/inconvenient caregiving activity (no significant difference across NYHA class). Nearly one-third of caregivers experienced stress (NYHA I/II/III–IV: 17.1%/28.8%/40.7%; p=0.0111) and anxiety (26.8%/24.1%/39.8%; p=0.0127) due to caregiving burden. The overall FAMQOL mean score decreased significantly (poorer QoL) with increase in NYHA class (I/II/III–IV: 58.1/56.3/52.2; p=0.0069). A trend of decreasing scores with increasing NYHA class was observed across physical, emotional, and social domains (each p≤ 0.012). Conclusion: Caregivers of HF patients with LVEF ≤ 60% experienced a significant burden, which was higher among caregivers of patients with more severe and symptomatic disease.
Objective: The objective of this study was to determine and characterize caregiver burden among caregivers of community-dwelling older persons in Jamaica. Method: A nationally representative cross-sectional study was done among persons providing noninstitutional care for a single person (≥60 years). The Zarit Burden Interview (ZBI) and a structured questionnaire were administered to 180 caregivers from four geographic health regions. Results: The ZBI scores ranged from 0 to 56 (median = 15). Independently associated factors were relationship to care recipient and age. Children/grandchildren had higher caregiver burden scores than formally employed caregivers (odds ratio = 2.9: 95% confidence interval: [1.02, 8.34]). Compared with caregivers 35 to 44 years, those aged 45 to 65 were almost 5 times more likely to report higher caregiver burden scores. Conclusion: Caregiver burden as identified by the ZBI was low. Age (45–65 years) and being the child/grandchild of the care recipient were independently associated with greater caregiver burden. Interventions to address caregiver burden must embrace strategies that recognize that these factors.
Background: Pain is a major concern among patients with advanced cancer and their family caregivers. Evidence suggests that pain coping skills training interventions can improve outcomes, however they have rarely been tested in this population. Aim: To test the efficacy of a caregiver-guided pain coping skills training intervention. The primary outcome was caregiver self-efficacy for helping the patient manage pain. Design: A randomized controlled trial compared the intervention to an enhanced treatment-as-usual control. Dyads in both conditions received pain education, and those in the intervention received three sessions of pain coping skills training. Caregiver outcomes (self-efficacy; caregiver strain, caregiving satisfaction, psychological distress) and patient outcomes (self-efficacy, pain intensity and interference, psychological distress) were collected at baseline and post-intervention. Setting/participants: Two hundred two patients with stage III–IV cancer and pain and their family caregivers were enrolled from four outpatient oncology clinics and a free-standing hospice/palliative care organization. Results: Compared to those in the control arm, caregivers in the intervention reported significant increases in caregiving satisfaction (p < 0.01) and decreased anxiety (p = 0.04). In both conditions, caregivers reported improvements in self-efficacy, and patients reported improvements in self-efficacy, pain severity and interference, and psychological distress. Conclusions: This is the first study to test a pain coping skills intervention targeted to patients and caregivers facing advanced cancer. Findings suggest that pain education provides benefits for patients and caregivers, and coping skills training may be beneficial for caregivers. Further research is needed to optimize the benefits of education and pain coping skills training for improving cancer pain outcomes. Trial registration: ClinicalTrials.gov NCT02430467, Caregiver-Guided Pain Management Training in Palliative Care
Background/objectives: As home becomes the most common place of death in the United States, information about caregiver support and place of death is critical to improve patient and caregiver experiences at end of life. We seek to examine (1) the association between family care availability and place of death; and (2) caregiving intensity associated with place of death. Design: 2017 National Health and Aging Trends Study and National Study of Caregiving; nationally representative cross‐sectional study of deceased older adults and last‐month‐of‐life (LML) caregivers. Setting: United States; all places of deaths. Participants: Three‐hundred and seventy‐five decedents and 267 LML caregivers. Measurements: Place of death (home, hospital, and nursing or hospice facility), family care availability (spouse/partner, household size, number of daughters and sons), caregiving intensity (hours of help provided at LML and a binary indicator for high care‐related emotional difficulty). Results: 38.9% of older adults died at home, followed by hospital (33.1%), and nursing or hospice facility (28.0%). In an adjusted multinomial logistic regression, decedents with larger household size (odds ratio [OR]: 0.441; 95% confidence interval [CI]: 0.269–0.724) and more daughters (OR: 0.743 [95% CI: 0.575–0.958]) had lower odds of dying in nursing or hospice facility relative to dying at home. For older adults who died at home, caregivers provided 209.8 h of help at LML. In contrast, when death occurred in nursing or hospice facility, caregivers provided 91.6 fewer hours of help, adjusted for decedent and caregiver characteristics. Dying in hospital was associated with higher odds of caregiver emotional difficulty relative to home deaths (OR: 4.093 [95% CI: 1.623–10.323]). Conclusions: Household size and number of daughters are important determinants of place of death. Despite dying at home being associated with more hours of direct caregiving; caregiver emotional strain was experienced as higher for hospital deaths. Better support services for end‐of‐life caregivers might improve patient and caregiver experiences for home and hospital deaths.
Objectives: Although siblings represent central members of the networks of caregivers and their parents, there has been limited attention to how siblings affect one another's well-being during caregiving. In this article, we draw from theories of identity and stress to examine the impact that siblings have on caregivers' psychological well-being. Specifically, we employ a mixed-methods approach to explore whether caregivers' perceptions that their siblings are critical of the care they provide their mother are associated with higher depressive symptoms and the mechanisms underlying this association. Methods: Using quantitative data collected from 404 caregivers nested within 231 families as part of the Within-Family Differences Study, we conduct mediation analyses to examine whether perceived sibling criticisms are associated with caregivers' depressive symptoms (a) directly and/or (b) indirectly through sibling tension. We then analyze qualitative data collected from the same caregivers to gain insight into the processes underlying statistical associations. Results: Quantitative analyses revealed that there was no direct relationship between perceived sibling criticisms and depressive symptoms; there was, however, an indirect relationship such that perceived sibling criticisms were associated with greater sibling tension, which in turn was associated with higher depressive symptoms. These quantitative findings were corroborated by qualitative analyses, which demonstrated that, in an effort to mitigate the negative impact of sibling criticisms, caregivers often employed strategies that may have fueled sibling tension. Discussion: These findings demonstrate how identity processes, as well as the family networks in which caregiving takes place, shape the experiences and consequences of parent care.
Background: Although the importance of caregiver engagement in a child's psychological treatment is well established within outpatient treatment settings, the question remains whether these findings can be generalized to more intensive treatment settings where caregiver engagement may be more challenging to facilitate. Design: A correlational, multi-informant design was used to collect data by caregiver self-report and therapist-report from a sample of 64 caregivers of youth referred for partial hospitalization. Results: Results show that caregivers' attitudinal self-assessment of engagement was not significantly related to their self-report of behavioral engagement (e.g. number of family sessions attended) or therapists' report of caregiver engagement. After controlling for caregiver expectations and therapist ratings of caregiver engagement, only caregiver ratings of attendance at family sessions marginally predicted treatment outcomes, but in the negative direction. Implications for adapting measures of caregiver engagement to intensive treatment settings and its impact on treatment outcomes are discussed.
Objective: As the number of informal caregivers and their caregiving responsibilities increase, this study aims at evaluating caregiver distress, quality of life (QoL) and their predictors in informal caregivers of cancer patients during active treatment and follow‐up. Methods: This cross‐sectional descriptive study targeted primary caregivers of patients with different cancer diagnoses. Caregiver‐reported outcomes were measured by the Caregiver Risk Screen (CRS), Distress Thermometer (DT) and Caregiver Quality of Life Index—Cancer (CQOLC). Results: Caregivers (n = 1580) experienced a low‐to‐moderate risk of caregiver distress and a moderate QoL during both treatment and follow‐up. About 13% reported a high caregiver risk and 20% reported severe distress. There was a strong and significant correlation between caregiver distress and caregivers' QoL (0.793). Predictive factors for higher distress and poorer QoL were: fewer emotional and practical resources, being female, non‐spousal relationship or not living together (p < 0.05). Caregivers of patients with head‐and‐neck, skin, lung and brain cancers reported the highest distress and lowest QoL. Conclusion: Caregiver distress is highly variable, but a minority of caregivers is at high risk for caregiver distress. Professional caregivers play an important role at supporting caregivers and detecting high‐risk caregivers.
Background: Caregivers are responsible for the care of another, such as a young adult, disabled child, elderly parent, or sick spouse. Individuals who have caregiving responsibilities must blend the often-contradictory behavioural expectations from the different roles in which they reside. Methods: Building on the theoretical foundations of Conservation of Resources theory, this study tests a mediational model explicating the process through which caregiver burden impacts mental health through work-family conflict among a community sample of 1,007 unpaid caregivers in the greater Chicago area who responded to a mail survey at three time points. Results: Structural equation modelling analyses indicate strain-based conflict as being a consistent mediator between caregiver burden and mental health at baseline and two years later. These findings can inform practice and policy for workers with caregiving responsibilities.
Objective: To assess the relationship between care giver burden, hopelessness and Psychological distress. To explore the impact of care giver burden on Psychological distress and mediating role of hopelessness among carers of Thalassemia patients. Study Design: Descriptive cross-sectional study. Place and Duration of Study: At the Thalassemia center of The Children’s Hospital & the Institute of Child Health Multan, Pakistan, in seven month from 17th November 2018 to 26th March 2019. Material and Methods: Two hundred and forty (240, 48.3% males and 51.6% female) carers of Thalassemia patients were assessed on Burden Scale for Family Caregivers (BSFC), Kessler Psychological Distress Scale (K10) and Beck Hopelessness Scale (BHS). Results: Findings showed that caregiver burden was positively correlated with psychological distress (p<0.01) and hopelessness (p<0.01). Results also revealed that caregiver burden significantly positively predicted hopelessness (p<0.00) and hopelessness mediated the relationship between care giver burden and psychological distress (p<0.00). Outcomes also illustrated that there were differences on care giver burden (p<0.01), Psychological distress (p<0.00) and hopelessness (p<0.00) among carers of patients with thalassemia disorders on the ground of carer’s gender. Conclusion: Care giver burden, Psychological distress and Hopelessness are interlinked phenomenon, while male have more hopelessness and female have more care giver burden and psychological distress.
Background: As the aging population increases, the rates of degenerative diseases associated with advanced age, such as Alzheimer’s disease and dementia, also rise. Thus, the caregiver population grows in response, increasing the rates of caregiver burden. Caregivers of older adults are usually family members, and providing care to older adults with Alzheimer’s disease and dementia can be very physically and emotionally depleting for the caregivers, leading to negative consequences on the physical and mental health of the caregivers; subsequently leading to caregiver burden. Methods: This systematic literature review examined articles within the APA PsychInfo database related to informal caregivers of Alzheimer’s and dementia patients, caregiver burden, risk factors associated with caregiver burden such as gender, kinship, cohabitation, and marriage status, and coping strategies, interventions, and resources that aid in mitigation of caregiver burden for these types of caregivers. Findings: This search yielded 26 studies that were included based on having met the eligibility criteria. Findings suggest that there are several risk factors associated with increased rates of caregiver burden in this caregiver population. Results addressed the benefits of coping strategies, interventions, and accessible resources on informal caregivers’ QOL and impacts on caregiver burden. Implications regarding ideal and accessible coping strategies and appropriate interventions for informal caregivers of individuals diagnosed with Alzheimer’s disease and dementia was addressed.
Objectives: To assess the relationship between caregiver burden and severity of symptoms of anxiety/depression in parents of children with cerebral palsy (CP), and to identify factors differentiating the level of caregiver burden. Setting: Regional rehabilitation centres in South-Eastern Poland.ParticipantsThe study involved 190 parents of children with CP, that is, 138 women and 52 men. Primary and secondary outcome measures: Caregiver burden was assessed using Caregiver Burden Scale (CBS), while the intensity of anxiety and depression symptoms was measured using Hospital Anxiety and Depression Scale (HADS). Potential predictors were examined using Gross Motor Function Classification System for Cerebral Palsy (GMFCS), Barthel Index (BI) as well as a questionnaire focusing on the characteristics of the child, the parent and the family. The analyses applied Pearson’s linear correlation coefficient as well as multiple regression analysis. Results: All the CBS measures are significantly correlated to HADS-A (anxiety) and HADS-D (depression). Intensity of anxiety is most visibly linked to CBS measures of disappointment and environment (p<0.0001), while severity of depression is related to emotional involvement and general strain (p<0.0001). The factors differentiating caregiver burden measure in the subscales of general strain (p<0.0001) and social isolation (p<0.0001) include the child’s age and BI, and the parent’s health status; in the subscale of disappointment (p<0.0001)—the child’s age, BI, GMFCS, as well as the parent’s age and health status; in the subscale of emotional involvement (p=0.0007)—BI, and the parent’s health status; in the subscale of environment (p=0.0002)—the child’s age and BI. Conclusions: There is a positive linear relationship between the caregiver burden measures and severity of anxiety and depression. Effort should be made to relieve caregiver burden in parents of children with CP.
Background: Buruli ulcer disease (BUD) results in disabilities and deformities in the absence of early medical intervention. The extensive role of caregiving in BUD is widely acknowledged, however, associated caregiver burden is poorly understood. In this paper we assessed the burden which caregivers experience when supporting patients with BUD in Ghana. Method: principal findings This qualitative study was conducted in 3 districts in Ghana between August and October 2019. 13 semi-structured interviews were conducted on caregivers of BUD patients in the local language of Twi. Data was translated into English, coded into broad themes, and direct content analysis approach was used to analyse results. Results: The results show the caregivers face financial, psychological and health issues as a consequence of their caregiving role. Conclusion/significance: This study found significant caregiver burden on family members. It also highlighted the psychological burden caregivers experience and the limited knowledge of the disease within endemic communities. Further research is needed to quantify the caregiver burden of BUD at different economic levels in order to better understand the impact of possible caregiver interventions on patient outcomes.
The article focuses on the Caregiver Burden for People with Schizophrenia in Medan, Indonesia. Topics discussed include Caregiving for a family member with a chronic and/or major illness is held as an obligation in many cultures; and interviews were digitally recorded and transcribed, with transcriptions checked for accuracy; and participants were deidentified in the transcripts, and analysis was performed using thematic analysis.
Background: Caregiver burden is frequently studied cross-sectionally, but longitudinal studies on family caregiver burden during active cancer treatment are lacking. The goals of this study were to characterize trajectories of caregivers' burden during a 6-month active treatment period, and to examine which predictors are associated with their burden. Methods: This study was a secondary analysis of data from a prospective study. A sample of 112 family caregivers of patients receiving cancer treatment were assessed at three time points (the initiation of new treatment regimen, 3-, and 6-month follow-up). Caregivers completed measures: Caregiver Reaction Assessment and Mutuality Scale of the Family Care Inventory. Data were analyzed using latent growth curve modeling. Results: The two highest burdens were subdomains related to disrupted schedule and financial problems. Models showed a decline in schedule burden over time, yet total burden and other subscales (financial problems, health problems, and lack of family support and self-esteem) remained relatively stable. In multivariate analysis, mutuality, the relationship quality between patients and caregivers was inversely related to burden at baseline. Being a spouse, a sole caregiver and lower income were related to higher burden over time. Our findings confirmed significant determinants of caregiver burden over the course of active treatment. It is important for health care providers to be attentive to vulnerable caregivers who are at higher risk of elevated burden over time. Conclusions: Considering the multidimensional nature of caregiver burden, early assessment and tailored support programs may be effective by focusing on patient-caregiver relationships, caregiving roles, and income. • Latent growth modeling is useful for examining baseline levels and changes of caregiver burden. • Patterns over time and factors that influence burden differ, based on each burden dimension. • Caregivers who are spouses, sole caregivers, and have lower income were more at risk for higher burden over time.
Aim: Informal caregivers of cancer patients have extensive burdens. They are susceptible for deterioration of their quality of life (QOL). We aimed to assess caregiver burden and QOL of family caregivers of cancer patients receiving chemotherapy admitted in the ward/intensive care unit/high-dependency unit. Materials and Methods: This prospective observational study including 178 caregivers was carried out in a tertiary care hospital. The assessment of caregiving burden was done using the Zarit Burden Interview and its impact on QOL using the WHO BREF QOL questionnaire. Results: The mean age and mean Zarit Burden score of caregivers were 38.98 ± 10.53 and 30.697 ± 8.96, respectively. Of the total, 70.22% of caregivers reported mild-to-moderate burden and 21.38% reported moderate-to-severe burden. On assessment of QOL WHO BREF, the mean general score was 5.79 ± 1.84, physical health score was 49.65 ± 16.07, psychological health 51.85 ± 20.43, social relations 59.38 ± 21.43, and environmental 58.73 ± 17.51. The QOL scores were slightly better in mild-to-moderate burden compared to moderate-to-severe burden but not statistically significant except for social relations (P = 0.053). We did not find any difference in burden scores or QOL between male and female caregivers. Conclusion: Mild-to-moderate burden was seen in 70.22% of caregivers and 21.38% had moderate-to-severe burden.
Objective: To examine interrelations between care-related burden on informal caregivers and their proxy assessments of outcomes in people without natural speech. Design: A cross-sectional survey. Setting: Data were collected in January 2019 from a postal survey of informal caregivers of people without natural speech who are insured by a large regional health insurance company in the German federal state of Lower Saxony. Participants: n=714 informal caregivers of people without natural speech of all ages and with various underlying disabilities were identified and contacted via the health insurance company. Data from n=165 informal caregivers (26.4%) were obtained. Main outcome measures: Caregiver burden (self-reported, Burden Scale for Family Caregivers), pragmatic communication skills of people without natural speech (proxy report, self-developed), health-related quality of life of people without natural speech (proxy report, DISABKIDS Chronic Generic Measure - DCGM-12) and functioning of people without natural speech (proxy report, WHO Disability Assessment Schedule 2.0). Results: The analyses revealed significant associations between caregiver burden on the one hand and both proxy-reported health-related quality of life (b=−0.422; p≤0.001) and functioning (b=0.521; p≤0.001) on the other. Adding caregiver burden to the regression model leads to a substantial increase in explained variance in functioning (R² Model 1=0.349; R² Model 2=0.575) as well as in health-related quality of life (R² Model 1=0.292; R² Model 2=0.460). Conclusions: Caregiver burden should be considered an important determinant when informal caregivers report outcomes on behalf of people without natural speech. Longitudinal studies are recommended to better understand the burdens experienced by caregivers when supporting people without natural speech.
Objectives: To examine the associations and the mechanisms between caregiver burden and compassion fatigue among family caregivers. Method: A cross-sectional study comprising 300 family caregivers of older relatives in Arab communities in Israel was conducted. Data were collected via face-to-face interviews in Arabic using structured questionnaires to identify factors associated with compassion fatigue (using a secondary traumatization stress scale). Bootstrapping with resampling strategies tested the multiple mediator model. Main findings: The results show a significant total effect of caregiver burden on compassion fatigue (b = 3.79, t (300) = 3.47, p <.001; R 2 =.50). This association was found to be partially mediated by family support (B =.81, 95% confidence interval [CI] = 0.23, 1.85) and disengagement coping (B =.97, 95% CI = 0.19, 2.14), but was not mediated by engagement coping strategies. Conclusion: Compassion fatigue is prevalent among family caregivers and requires more attention from professionals and policymakers.
Introduction: Dementia is a worldwide health concern with incident rates continuing to increase. While depression prevalence is high in people with dementia and psychological interventions such as cognitive behavioural therapy (CBT) are effective, access to psychological interventions remains limited. Reliance on traditional CBT for people with dementia and depression may present difficulties given it is a complex psychological approach, costly to deliver, and professional training time is lengthy. An alternative approach is behavioural activation (BA), a simpler psychological intervention for depression. The present study seeks to work with people with dementia, informal caregivers, community stakeholders, and healthcare professionals, to adapt a guided low-intensity BA intervention for people with dementia and depression, while maximising implementation potential within the Swedish healthcare context. Methods and analysis: A mixed methods study using codesign, principles from participatory action research (PAR) and normalisation process theory to facilitate the cultural relevance, appropriateness and implementation potential of the intervention. The study will consist of four iterative PAR phases, using focus groups with healthcare professionals and community stakeholders, and semi-structured interviews with people with dementia and informal caregivers. A content analysis approach will be adopted to analyse the transcribed focus groups and semi-structured interviews recordings. Ethics and dissemination: The study will be conducted in accordance with the Declaration of Helsinki and data handled according to General Data Protection Regulation. Written informed consent will be obtained from all study participants. In accordance with the Swedish Health and Medical Services Act, capacity to consent will be examined by a member of the research team. Ethical approval has been obtained from the Swedish Ethical Review Authority (Dnr: 2020-05542 and Dnr: 2021-00925). Findings will be published in an open access peer-reviewed journal, presented at academic conferences, and disseminated among lay and healthcare professional audiences.
Background: Families are the backbone of caregiving for older adults living in communities. This is a tradition common to Thailand and many low- and middle-income countries where formal long-term care services are not so available or accessible. Therefore, population aging demands more and more young people engaging as family caregivers. Informal caregiving can become an unexpected duty for anyone anytime. However, studies measuring the burden of informal caregivers are limited. We aimed to determine the caregiver burden, both from the perspective of the caregivers as well as that of their care recipients. Method: We used the baseline survey data from a cluster randomized controlled trial providing a community integrated intermediary care (CIIC) service for seniors in Chiang Mai, Thailand, TCTR20190412004. Study participants were 867 pairs of older adults and their primary family caregivers. Descriptive analysis explored the characteristics of the caregivers and binary logistic regression identified factors influencing the caregivers’ burden. Results: The mean age of family caregivers was 55.27 ± 13.7 years and 5.5% indicated the need for respite care with Caregiver Burden Inventory (CBI) scores ≥24. The highest burden was noted in the time-dependence burden domain (25.7%). The significant associated factors affecting CBI ≥24 were as follows: caregivers older than 60 years, being female, current smokers, having diabetes, and caring for seniors with probable depression and moderate to severe dependency. Conclusions: A quarter of caregivers can have their careers disturbed because of the time consumed with caregiving. Policies to assist families and interventions, such as respite service, care capacity building, official leave for caregiving, etc., may reduce the burden of families struggling with informal care chores. Furthermore, caregiver burden measurements can be applied as a screening tool to assess long-term care needs, complementing the dependency assessment. Finally, implementation research is required to determine the effectiveness of respite care services for older people in Thailand.
Background: The responsibility of caring for patients with advanced cancer in sub-Saharan Africa is mostly shouldered by family members because of paucity of institutional facilities. There is a growing concern that the number of women needing treatment for advanced breast cancer is rising at an unprecedented rate in Nigeria. Aim: To assess the caregiver burden and its associated factors amongst family caregivers of women with advanced breast cancer. Setting: The study was conducted at the radiation oncology clinic of the University College Hospital, Ibadan, Nigeria. Methods: A cross-sectional descriptive study was conducted amongst 157 eligible family caregivers of women with advanced breast cancer. The family caregivers completed an interviewer-administered questionnaire, which included the socio-demographic data, the caregiving process and the Zarit Burden Interview (ZBI). Logistic regression was used to identify factors, and ethical approval was obtained. Results: Over half (53%) of the respondents were males with spousal caregivers dominantly constituting 27.4% of all respondents, closely followed by daughters (25.5%) of the care recipients. The mean ZBI score was 29.84 ± 13.9. Most (72%) of the caregivers experienced burden. Factors associated with caregiver burden were previous hospitalisation of the care recipient (odds ratio [OR] = 3.74, confidence interval [CI]: 1.67 to 8.38) and perceived dysfunction in patients activities of daily living (OR = 2.57, CI: 1.14 to 5.78). Conclusion: Family caregivers of women with advanced breast cancer experience burden of care. Recognition of this vulnerable population and the care recipient as a dyad is a sine qua non in mitigating the burden associated with their caregiving role.
Background: Family caregivers of bedridden or homebound patients are at risk of adverse physical and psychological outcomes. There is a need for a culturally adapted and valid instrument for measuring caregiver burden in palliative care programs. Objective: To develop a reliable and valid instrument to measure the self-perceived burden of informal caregivers of patients with serious health-related suffering. Design/Setting: "Caregiver burden" was conceptualized based on literature review and in-depth interviews. Content validity assessment, cognitive interviews, and a cross-sectional survey were used to develop and validate the instrument. The study was set within the primary palliative care program in Kerala, India. Subjects: Ten palliative care professionals and 10 caregivers were engaged for the content validity assessment and cognitive interviews, respectively. The cross-sectional survey was conducted among 221 (males = 21) family caregivers in Kollam district, Kerala. The Institutional Ethics Committee of the Sree Chitra Tirunal Institute for Medical Sciences and Technology, Trivandrum reviewed and cleared the study. Measurements: Underlying factors were identified by using principal axis factoring. The corresponding sub-scales and a composite scale were tested for internal consistency, construct validity, reproducibility, floor and ceiling effects, and interpretability. Results: Two factors that explained 29.5% of the variance were extracted. Two sub-scales-consequences of caregiving and lack of financial security-were derived. The final nine-item Likert-Type Achutha Menon Centre-Caregiver Burden Inventory (AMC-CBI) had a content validity index of 0.77, Cronbach's alpha of 0.82, and high test-retest reliability (ρ = 0.87, p < 0.001). Conclusion: The AMC-CBI is a valid and reliable instrument for burden assessment of caregivers of patients served by the home-based palliative care program in Kerala, India.
Purpose: This study aims to describe survivors of stroke circumstances, issues with providing care for survivors of stroke and services expected by caregivers and survivors of stroke. Design/methodology/approach: A qualitative research design was conducted in Singburi Province. Data collection methods included in-depth interviews, focus groups and participatory observations. Semi-structured in-depth interview guides, quality-of-life scale and depression scale were used to collect data from survivors of stroke, their caregivers, health personnel, local governors and village health volunteers. Naturalistic research tradition was used for qualitative data analysis and descriptive statistics for quantitative data analysis. Findings: The majority of survivors of stroke had hemiplegic limb and severe deficits in their activities of daily living. Caregivers were family members, and they often developed depression. Issues with providing care to stroke survivors included lack of knowledge about stroke and home care, inadequacy and discontinuity of care and the shortage of stroke care personnel in the community. A stakeholder's expected stroke services included the provision of effective continuing care, community participation in care and enhancing the village health volunteer's capacity. Originality/value: This study illustrated the stroke service systems in rural Thai communities. The study's findings could be applied when planning future research using community participation to test a model of care for stroke survivors to promote better outcomes and be responsive to the needs of stroke survivors, especially those who are disabled.
Background: Much attention has been paid to the effects of the COVID-19 pandemic on long-term care but the impact on informal caregivers has remained speculative. In Austria, like in other European countries, informal care is carried out overwhelmingly by (non-cohabiting) relatives. Limited care services available during the pandemic, social-distancing, increased unemployment and competing care needs within households (e.g. due to school closures) may have changed the prevalence and intensity of informal caregiving. Moreover, these changes may have increased the psychological strain experienced by caregivers. Focusing on Austria, this study aims to empirically analyse the following research questions: how have the prevalence and intensity of informal care changed due to the pandemic? How has the psychological well-being of informal caregivers been affected? Methods: We use a pre- and post-onset of the pandemic research design based on a representative survey carried out in Austria in June 2020 (N = 2000) in combination with comparable 2015 data from the European Social Survey. Results: Findings suggest that neither prevalence nor intensity of informal care changed significantly due to the pandemic. However, the psychological well-being gap between carers and non-carers increased with the start of the pandemic, especially among men. Findings are discussed in relation to the policy measures implemented and possible policy implications for the future.
Aims: The purpose of this study was to retrospectively investigate care difficulties experienced by caregivers of people with schizophrenia during COVID‐19 pandemic lockdowns in Japan (April 7‐May 25, 2020) and examine associations between these care difficulties during lockdowns and daily caregiver burden. Methods: Data were collected from 132 participants of the LINE Schizophrenia Family Association using an online survey. Results: Caregivers were mostly concerned about who would care for people with schizophrenia if caregivers become infected with COVID‐19. A significant association was found between higher daily caregiver burden and more difficult care experiences during COVID‐19 pandemic lockdowns (B = 0.58, 95% confidence interval, 0.40‐0.75, P < .01, adjusted R‐squared = .34). Conclusions: Further studies and supports for caregivers of people with schizophrenia are needed.
Background: Taking care of patients with bipolar disorder (BD) makes critical challenges for their informal caregivers (ICGs) and forces them to tolerate considerable burden. This qualitative study explored the dimensions of ICGs' care burden (CB) based on their own experiences and the patients' therapists. Materials and methods: This is a qualitative study which was conducted based on conventional content analysis through semistructured and in-depth interviews. Purposive sampling was used to select the participants including 13 ICGs and 14 therapists (2 psychiatrists, 10 psychiatric nurses, and 2 clinical psychologists). Interviews were audiotaped, transcribed verbatim, and analyzed using Graneheim's 2004 principles. Results: Qualitative analyses yielded three major themes: 'challenges associated with the nature of BD,' 'challenges related to the ICGs,' and 'challenges related to interventions.' The categories of the first theme entailed 'individual-oriented characteristics of BD' and 'social-oriented characteristics of BD.' The categories of the second theme consisted of 'social stigma,' 'psychiatric problems and helplessness of ICGs,' 'financial costs related to providing cares,' and 'insufficient self-efficacy of ICGs in cares provision.' The categories of the last theme included 'educational interventions' and 'organizational interventions.' Conclusions: This study showed that the burden of ICGs have individual, social, and organizational aspects. Every one of them impacts the severity of their burden remarkably. The depth of the therapists' experiences has a significant role in designing the interventions to reduce this burden. The present investigation emphasized the constitution of a comprehensive framework related to all factors affecting burden in a developing country.
Background: Fatigue interference with activities, mood, and cognition is one of the most prevalent and bothersome concerns of advanced gastrointestinal (GI) cancer patients. As fatigue interferes with patient functioning, family caregivers often report feeling burdened by increasing responsibilities. Evidence-based interventions jointly addressing cancer patient fatigue interference and caregiver burden are lacking. In pilot studies, acceptance and commitment therapy (ACT) has shown promise for addressing symptom-related suffering in cancer patients. The current pilot trial seeks to test a novel, dyadic ACT intervention for both advanced GI cancer patients with moderate-to-severe fatigue interference and their family caregivers with significant caregiving burden or distress. Methods: A minimum of 40 patient-caregiver dyads will be randomly assigned to either the ACT intervention or an education/support control condition. Dyads in both conditions attend six weekly 50-min telephone sessions. Outcomes are assessed at baseline as well as 2 weeks and 3 months post-intervention. We will evaluate the feasibility, acceptability, and preliminary efficacy of ACT for improving patient fatigue interference and caregiver burden. Secondary outcomes include patient sleep interference and patient and caregiver engagement in daily activities, psychological flexibility, and quality of life. We will also explore the effects of ACT on patient and caregiver physical and mental health service use. Discussion: Findings will inform a large-scale trial of intervention efficacy. Results will also lay the groundwork for further novel applications of ACT to symptom interference with functioning and caregiver burden in advanced cancer. Trial Registration ClinicalTrials.gov, NCT04010227. Registered 8 July 2019.
Objective: This research was conducted for the purpose of examining the care burden and quality of life in family caregivers of palliative care patients. Design: The research design was a descriptive correlational study conducted with the caregivers of 163 patients residing in palliative care units. Data were collected via a demographic survey, The Zarit Burden Interview (ZBI) and the World Health Organization Quality of Life Assessment (WHOQOL). Results: The results showed that there was a negative correlation between ZBI and WHOQOL scores. Further, there was a significant negative correlation between many subdimensions of the ZBI (general quality of life, general perception of health, being satisfied with daily life skills, home conditions, energy and self-satisfaction) and the WHOQOL. Quality of life thus appeared to be reduced in family members with a high level of care burden and that the quality of life of caregivers depends on the individual characteristics of the caregiver. Conclusions: Social workers, nurses and physicians should regularly assess the burden and quality of life of caregivers.
Objectives and Method: In this study, the authors examined cancer family caregivers' life experience and the meaning of leisure, focusing on their difficulties and the role of leisure. Findings: We found four main themes related to cancer family caregivers' life and leisure experiences: stressors, adapting, the need of leisure, and leisure experiences. Our results showed that the caregivers experienced high levels of psychological and physical stress and conflicts while caring for cancer patients, resulting in a poor quality of life. They believed that leisure activity is necessary and can improve their quality of life; however, they felt a sense of guilt while engaging in personal activities.
Study objective: To investigate the association between family cancer caregivers’ unmet daily needs and emotional states of depression, anxiety and stress across their care recipient’s treatment phases. Method: A cross-sectional study design and self-report questionnaires were used. Family caregivers (N = 237) of cancer patients in ambulatory cancer clinics were recruited from May to December 2017, and completed a sociodemographic and medical questionnaire, the Depression Anxiety Stress Scale and Needs Assessment of Family Caregivers-Cancer Scale. Hierarchical linear regression was conducted to examine the influence of each predictor (sociodemographic variables, unmet personal care and role management needs, cancer treatment phase) on the Depression Anxiety Stress Scale total score, depression subscale, anxiety subscale, and the stress subscale. Results: Family caregivers’ unmet daily activity needs, in particular higher unmet personal care needs, during the intermediate phase (6–9 months), were significantly associated (ps<0.05) with overall distress (b = 4.93) and stress (b = 2.26). In the chronic treatment phase (>9 months), the significant association of unmet personal care needs was with overall distress (b = 5.91), anxiety (b = 1.97) and stress (b = 2.53). After completing treatment, unmet role management needs were only significantly associated with stress (b = -1.59). Caregivers’ higher depression was also associated with greater unmet role management needs, regardless of treatment phases. Conclusions: Intermediate and chronic cancer treatment phases were identified as having greatest effect on caregivers’ unmet daily activity needs and emotions. Unmet personal care needs played the major effect on overall negative emotional states in the intermediate treatment phase and stress in the chronic treatment phase. Close attention to caregivers needs in intermediate and chronic treatment phases, would be highly beneficial in alleviating negative emotional disturbances.
Objectives: to analyze the burden and the social support of the informal caregivers of people undergoing kidney dialysis. Methods: mixed study, based on the Theory of Stress and Overload, using instruments of sociodemographic characterization, the Social Support Survey from the Medical Outcomes Study, Zarit's Burden Scale, and guiding questions. Analysis of data used statistical and thematic inferences. Results: 55 caregivers were evaluated, most were women, from 31 to 50 years old, married, and having worked in care for more than three years. A high level of affective and material support was observed, with a light overload on the caregiver. The central theme of the discourses was: "Experiences of the caregiver: between the burden of responsibility and the search for meaning". Conclusions: a small overload was found in the participants, with a high median in the dimensions of affective and emotional support, in the relations between positive social interactions and the burden of the caregivers, in addition to the duality or responsibility and the meaning of care.
Introduction: Caring for patients receiving hemodialysis places a burden on caregivers. Objectives: To examine caregiving burden and depression in the family caregivers of patients receiving hemodialysis and associated factors. Methods: A cross-sectional design was used. Participants were 204 adult caregivers of patients receiving hemodialysis. Questionnaires included sociodemographic characteristics, the Oberst Caregiving Burden Scale-Difficulty (OCBS-D) subscale, Bakas Caregiving Outcomes Scale (BCOS), and the Patient Health Questionnaire-9 to measure the burden and depression of caregivers. Descriptive statistics, two linear regression analyses, and multinomial logistic regression were used in data analysis. Results: The majority (59.0%, n = 120) of caregivers had a moderate level of depression with scores ranging from 11 to 16. The analysis showed that the mean score of OCBS-D was 42.0 (SD = 4.7) with scores ranging from 26.9 to 58.9 (range = 32.0), while the caregivers' mean score of BCOS was 52.1 (SD = 9.3) with scores ranging from 38.0 to 82.5 (range = 44.5). Given that the expected score of OCBS-D and BCOS ranged from 15 to 75 and 15 to 105, respectively, the analysis indicated a moderate to a high level of burden among caregivers. Age and travel time were associated with a higher likelihood of negative outcomes in the family caregivers, while higher patient age was associated with a greater caregiver burden. Relevance to Clinical Practice: It is important to assess and address the practical issues that caregivers experience, such as employment-related responsibilities, financial difficulties, and the need to learn specific skills related to patients’ chronic illnesses. Conclusion: Caregivers of patients receiving hemodialysis are likely to experience moderate depression and burden. Caregiver burden increases with patient age and travel time to the hemodialysis units.
Background: Caregiving appraisal is a key driver to moderating caregiving outcomes. The caregiving appraisal of informal caregivers of people with dementia requires increased attention. This study aimed to explore the feasibility and acceptability of an evidence‐based bibliotherapy protocol, and test the efficacy on improving caregiving appraisal. Design: A two‐arm pilot randomized controlled trial was adopted. Sixty informal caregivers were randomized to either the intervention group, receiving eight weekly professional‐guided bibliotherapy sessions in addition to usual care; or the usual care group. The professional‐guided bibliotherapy sessions were weekly sessions in which caregivers self‐read the designated chapter and then received telephone coaching. Caregiving appraisal, coping, psychological well‐being, positive aspects of caregiving, knowledge of dementia, and attitude toward dementia were assessed both at baseline and immediately after the intervention. Assessors were blinded to group allocation. Individual interviews among 10 participants from the intervention group were conducted to explorecaregivers' acceptance of the intervention. Descriptive statistics, χ2 test, Mann–Whitney U test, independent t test, generalized estimating equation, and content analysis were used for data analysis. This study pioneered the use of bibliotherapy among informal caregivers of people with dementia. Results: The participant recruitment rate was 69.8%. The attrition rate of the intervention group was 20%. Bibliotherapy had a significant time‐by‐group interaction effect on caregiving appraisal (p < 0.001), coping (p = 0.003), positive aspects of caregiving (p = 0.001), knowledge of dementia (p = 0.017), and attitude toward dementia (p < 0.001). The effect on psychological well‐being, however, was only significant on the personal growth subscale (p = 0.025). The acceptability was also confirmed. No adverse event was documented.
Background: Family caregivers of patients with dementia are at high risk of stress and burden and quarantine due to COVID-19 pandemic may have increased the risk of psychological disturbances in this population. The current study was carried out during the national lockdown declared in March 2020 by the Italian government as a containment measure of the first wave of coronavirus pandemic, and is the first nation-wide survey on impact of COVID-19 lockdown on mental health of dementia informal caregivers. Methods: Eighty-seven Dementia Centers evenly distributed on the Italian territory enrolled 4710 caregiver-patient pairs. Caregivers were delivered a telephone interview assessing classical symptoms of caregiver stress and concern for the consequences of COVID-19 infection on patient’s health. We calculated prevalence of symptoms and regressed them on various potential stress risk factors: caregivers' socio-demographic characteristics and lifestyle, patients' clinical features, and lockdown-related elements, like discontinuity in medical care. Results: Approximately 90% of caregivers reported at least one symptom of stress, and nearly 30% reported four or more symptoms. The most prevalent symptoms were Concern for consequences of COVID-19 on patient's health (75%) and Anxiety (46%). The main risk factors for stress were identified as a conflicting relationship with the patient and discontinuity in assistance, but caregiver's female sex, younger age, lower education and cohabitation with the patient also had an impact. Availability of help from institutions or private individuals showed a protective effect against Sense of Abandonment, but a detrimental effect on concern about the risk for the patient to contract COVID-19. The only protective factor was mild dementia severity, which was associated with a lower risk of feeling isolated and abandoned; type of dementia, on the other hand, did not affect stress risk. Conclusion: Our results demonstrate the large prevalence of stress in family caregivers of patients with dementia during COVID-19 pandemic, and has identified both caregivers and situations at higher risk of stress, that should be taken into account in the planning of interventions in support of quarantined families and patients.
Background: Studies reported the relationship between behavioural and psychological symptoms of dementia (BPSD), cognitive function, caregiver burden, and therapeutic effects. However, the causal relationship between BPSD in community-dwelling patients with Alzheimer’s disease (AD) and caregiver burden is yet to be established. This study aimed to classify BPSD in patients with AD and identify the relationship between BPSD and the factors affecting family caregiver burden. Methods: Path analysis was conducted at a neurology outpatient clinic of a tertiary general hospital in South Korea. The medical records of 170 patients, aged ≥50 years, diagnosed with or suspected for AD were retrospectively reviewed. We investigated cognitive function (Korean version of the Mini-Mental-State Exam), dementia stages (Korean version of the Expanded Clinical Dementia Rating scale), depression (Short-form Geriatric Depression Scale-Korea), activities of daily living (ADL; Korean version of the Barthel Activities of Daily Living index), instrumental activities of daily living (IADL; Seoul-Instrumental Activities of Daily Living), and BPSD and caregiver burden (Korean Neuropsychiatric Inventory). Considering the characteristic features of BPSD with various symptoms, BPSD was classified using factor analysis. Factor extraction was performed using principal component analysis, followed by Varimax factor rotation. Results: Mean total BPSD score was 17.66 ± 20.67, and the mean score for family caregiver burden was 9.65 ± 11.12. Symptom cluster-1 (hyperactivity symptoms) included disinhibition, irritability, and agitation/aggression. Symptom cluster-2 (psychosis symptoms) included hallucinations, anxiety, elation/euphoria, delusions, and depression/dysphoria. Symptom cluster-3 (physical behaviour symptoms) included appetite and eating abnormalities, apathy/indifference, aberrant motor behaviour, sleep, and night-time behaviour disturbances. Dementia stages, ADL, and IADL had indirect effects on family caregiver burden through hyperactivity, psychosis, and physical behaviour symptoms, indicating that BPSD exerted a complete mediating effect. Conclusions: Unlike previous studies, we classified BPSD symptoms into similar symptom clusters to evaluate its effect on caregiver burden, rather than collectively investigating the 12 symptoms of BPSD. As the dementia stage worsens, symptom clusters in BPSD serve as a medium between ADL and IADL degradation and for the increase in caregivers’ burden. The development and implementation of therapeutic, nursing interventions, and policies focusing on dementia stages, ADL, and IADL, delaying and preventing BPSD can alleviate family caregivers’ burden.
Introduction: The dementia disease affects both the family caregivers’ health and social and psychological well-being. The aim of this review was to identify and describe the needs of family caregivers living with a person with dementia at home. Method: The literature review, conducted using the matrix method, was also inspired by Thomas and Harden’s thematic synthesis. Results: Three themes were identified: (1) the family caregiver’s new roles and relationships; (2) caregiver burdens; and (3) the caregiver’s need for information and support. Conclusion: When family caregivers gradually lose their reciprocal relationship with the person with dementia, and sometimes also with family and friends, the need for other kinds of social contact arises e.g. with others in a similar situation. They also need to have some respite to provide room to pursue their own interests and take care of their own health. Also, a high level of individually tailored information is needed.
Purpose: To explore the barriers to family resilience in caregivers of people who have schizophrenia. Design: A qualitative descriptive approach was used. Methods: Semistructured interviews were conducted with family caregivers of patients with schizophrenia registered at the psychiatry outpatient unit of a hospital center. Content analysis was performed on audio‐recorded and verbatim‐transcribed interviews. The consolidated criteria for reporting qualitative research (COREQ) checklist was applied to this study. Results: A total of 31 family caregivers participated, the majority of whom were female (71%) with an average age of 57.5 years. Most participants lived with and cared for their relative (90.3%). The caregiver role was assumed mostly by mothers (54.8%) and fathers (22.6%). Barriers to family resilience in caregivers of people experiencing schizophrenia broadly fall under five categories: lack of knowledge about the disease, social stigma, expressed emotion, involvement in the relationship, and blame. Conclusions: In view of the paucity of studies exploring and understanding the barriers to family resilience, this study presents itself as one of the first in this area. There are different barriers to family resilience. This research provides an overview and an understanding of key barriers to family resilience in caregivers of people experiencing schizophrenia. Clinical Relevance: There is a need for nurses to help families to be resilient. By understanding the barriers to resilience, nurses are able to focus on these factors and help families to remove or reduce their influence.
Background: This study aimed to analyze the efficacy of an intervention program for informal caregivers of elderly dependent that combined balneotherapy with group psychoeducation (BT-PE) based on the balanced care model. Method: The BT-PE intervention (N = 124) was compared with a comparison group only exposed to balneotherapy (BT) (N = 76). The two modalities included both primary and secondary informal caregivers. A three-way mixed ANOVA was conducted to determine the effects of two between-subjects´ factors (intervention group and caregiver type) and one within-subjects´ factor (time) on burden, depression, anxiety, maladjustment and care satisfaction. Results: Results showed less burden and more care satisfaction in both primary and secondary caregivers participating in the BT-PE program after the interventions. Primary caregivers also showed lower levels of maladjustment in the experimental group at post-intervention. Although depressive symptoms and anxiety decreased significantly in both intervention groups, BT-PE did not show lower scores compared with the application of sole BT. Conclusion: The relevance of caregivers´ psychoeducation on the balanced care model and its combination with balneotherapy is highlighted.
Background: One in four Baby Boomers fills the informal caregiver role in the United States. The objectives of this study were to estimate the prevalence of Baby Boomers who are informal caregivers for people living with dementia and compare their physical and mental health status to caregivers for persons with conditions other than dementia using 2015–2018 Behavioral Risk Factor Surveillance System data (N = 10,602). Methods: We identified caregiving status (assisting a family member/friend with a long-term illness or disability in the past month, managing personal care, and not caring for a child/grandchild) and whether the care recipient’s major health condition was dementia. We calculated weighted estimates and used chi-square tests and log-binomial regression for comparisons of selected characteristics. Results: Among Baby Boomer caregivers, 15.4% were caring for someone with dementia. Dementia caregivers were more likely to be female, caring for a parent/parent-in-law, and providing care longer than caregivers for persons without dementia. After adjusting for sociodemographic and caregiving characteristics, the prevalence of fair/poor health, frequent mental distress, and chronic conditions were similar across types of caregivers. Conclusions: Although no differences in caregiver’s physical and mental health by care recipient’s dementia status were found, we should underscore the importance of maintaining Baby Boomer caregivers’ health and well-being.
Context: Hospice deaths in the U.S. are increasing. Dying hospice patients may have rapidly emerging needs the hospice team cannot immediately meet, exposing family caregivers to fright-inducing (i.e., scary) situations. Objectives: To examine relationships between hospice care and family caregiver exposures and psychological responses to witnessing common and distressing patient symptoms near the end of life. Methods: Secondary analysis of prospective cohort study of 169 patients with advanced cancer and their family caregivers was analyzed. Multivariable regression analyses modeled associations between hospice use and caregiver exposures and psychological responses (fear and helplessness) to witnessing distressing symptoms common near death, adjusting for potential confounding influences (e.g., home death, patient characteristics, and suffering). Caregiver self-reported exposures and responses to observing patient symptoms during the last month of life were assessed using the validated Stressful Caregiving Response to Experiences of Dying (SCARED) scale. Results: Hospice care was significantly positively associated with more exposures and negative psychological responses to distressing patient symptoms, adjusting for home death, patient characteristics, and physical and mental suffering. On average, hospice patients' caregivers scored 1.6 points higher on the SCARED exposure scale and 6.2 points higher on the SCARED psychological response scale than caregivers of patients without hospice (exposure: 10.53 vs. 8.96; psychological responses: 29.85 vs. 23.67). Patient pain/discomfort, delirium, and difficulty swallowing/choking were reported by three-fourths of caregivers and associated with the most fear and helplessness among caregivers. Conclusion: Hospice care is associated with more exposures to and caregiver fear and helplessness in response to scary patient experiences. Research is needed to understand how better to support family caregivers of hospice patients to enable them to cope with common distressing symptoms of dying cancer patients. Hospice clinicians providing additional education and training about these symptoms might enable caregivers to better care for dying loved ones and reduce the stresses of end-of-life caregiving.
Background: Although caregivers of patients with eating disorders usually experience a heavy caregiving burden, the effects of social support on caregivers of patients with eating disorders are unknown. This study aimed to investigate how social support for mothers who are caregivers of patients with an eating disorder improves the mothers’ mental status and, consequently, the symptoms and status of the patients. Methods: Fifty-seven pairs of participants were recruited from four family self-help groups and one university hospital in Japan. Recruitment was conducted from July 2017 to August 2018. Mothers were evaluated for social support using the Japanese version of the Social Provisions Scale-10 item (SPS-10), self-efficacy using the General Self-Efficacy Scale, loneliness using the University of California, Los Angeles Loneliness Scale, listening attitude using the Active Listening Attitude Scale, family functioning using the Family Assessment Device, depression symptoms using the Beck Depression Inventory (Second Edition), and psychological distress using the Kessler Psychological Distress Scale. Patients were evaluated for self-esteem using the Rosenberg Self-Esteem Scale, assertion using the Youth Assertion Scale, and their symptoms using the Eating Disorder Inventory. We divided the mothers and patients into two groups based on the mean score of the SPS-10 of mothers and compared the status of mothers and patients between the high- and low-scoring groups. Results: High social support for mothers of patients with eating disorders was significantly associated with lower scores for loneliness and depression of these mothers. We found no significant differences in any patient scores based on mothers’ level of social support. Conclusions: For patients with eating disorders, social support for a caregiver cannot be expected to improve their symptoms, but it may help prevent caregiver depression and loneliness.
Background: Depression among family caregivers is becoming an increasingly important issue due to a growing elderly population. This study aimed to examine the association of living with a patient with dementia and family caregivers’ depressive symptoms, among Korean adults. Methods: This study used the data of 371,287 participants after excluding those who indicated having dementia themselves from the Korea Community Health Survey of 2018–2019. Depressive symptoms were measured using the Patient Health Questionnaire-9. Data were analyzed using multiple logistic regression. Results: The rates of spouse caregivers having depressive symptoms were 9.4% and 10.8% among men and women, respectively. The odds ratio for risk of depressive symptoms among male and female spouse caregivers in comparison to non-caregivers was 2.65 and 2.28, respectively. In the subgroup analysis, the highest income group was associated with risk of depressive symptoms, with an odds ratio of 4.28 for men, and 3.02 for women. Conclusion: Having a patient with dementia in the family was significantly associated with family caregivers’ depressive symptoms. In particular, when the patient with dementia was a spouse, both women and men were likely to have depressive symptoms. To reduce the burden of caregivers, we need management policies and interventions for family caregivers.
Objectives: Novel coronavirus disease (COVID-19) pandemic could increase the mental health burden of family caregivers of older adults, but related reports are limited. We examined the association between family caregiving and changes in the depressive symptom status during the pandemic. Methods: This cross-sectional study included 957 (mean age [standard deviation] = 80.8 [4.8] years; 53.5% females) community-dwelling older adults aged ≥ 65 years from a semi-urban area of Japan, who completed a mailed questionnaire. Based on the depressive symptom status assessed with the Two-Question Screen between March and October 2020, participants were classified into four groups: “non-depressive symptoms,” “incidence of depressive symptoms,” “remission from depressive symptoms,” or “persistence of depressive symptoms.” Participants were assessed in October 2020 for the family caregiving status, caregiving role, the severity of care recipients’ needs, and increased caregiver burden during the pandemic, each with the simple question. Multinomial logistic regression analysis was applied to obtain the odds ratios (ORs) and 95% confidence intervals (CIs) for changes in depressive symptom status. Results: Compared to non-caregivers, family caregivers were associated with the incidence (OR [95% CI] = 3.17 [1.55–6.51], p < 0.01) and persistence of depressive symptoms (OR [95% CI] = 2.39 [1.30–4.38], p < 0.01). Primary caregivers, caregivers for individuals with severe care needs, and caregivers with increased burden during the pandemic had a high risk of depressive symptoms. Conclusions: Family caregivers had a high risk of depressive symptoms during the pandemic. Our findings highlight the need for a support system for family caregivers.
Aims: To evaluate the effectiveness of the hospital‐family holistic care model based on the theory of 'Timing It Right' in caregivers of patients with permanent enterostomy. Design: A prospective randomized controlled trial. Methods: One hundred and twenty‐five caregivers of patients with permanent enterostomy were recruited from 1 May 2017–31 August 2019. They were randomized into either intervention group (N = 62) or control group (N = 63). The control group received routine care and follow‐up, while the intervention group received routine care, follow‐up, and hospital‐family holistic care intervention based on 'Timing It Right'. The care ability, psychological distress, and life quality of the caregivers were evaluated between the groups before the intervention, at discharge, and 3 and 6 months after discharge. Results: One hundred and eleven caregivers completed the study (88.8%). At 3 and 6 months after discharge, the care ability and life quality in the intervention group were significantly better than those in the control group (t = 8.506/9.783, t = 22.652/26.179, p < 0.05) based on the t tests, and the psychological distress was lower than that in the control group. The ostomy adaptability of the control group was significantly lower than that in the intervention group (p < 0.001) based on the t tests, and the χ2 test showed that ostomy complication was more than that in the intervention group (23.81% vs. 12.90% and 34.92% vs. 19.35%; p < 0.05) at 3 and 6 months after discharge. The interaction between time and group showed that the effect of time factor varied with the group and the four evaluation indexes in the intervention group gradually improved with the extension of the observation time and were better than those in the control group based on generalized estimating equation model. Conclusion: The hospital‐family holistic care model based on 'Timing It Right' can effectively improve the care ability of caregivers of patients with permanent enterostomy, reduce psychological distress, and improve the quality of life. Impact: The caregivers of patients with permanent enterostomy showed dynamic changes in their care experience and needs at different stages of the disease. The hospital‐family holistic care intervention strategy based on 'Timing It Right' can effectively improve the caregiver's care ability, alleviate psychological distress, and improve the quality of life. Additionally, improving the patients' stoma adaptability and reducing the incidence of complications related to ostomy.
Aims: To examine the psychological well-being of primary caregivers of infants and toddlers with Congenital Zika Syndrome (CZS), and the roles of family resources, parenting stress, and coping strategies in caregivers' adaptation. Methods: Family caregivers (N = 50) of children with CZS who were receiving treatment at a rehabilitation hospital in Recife, Brazil participated a cross-sectional survey study. Caregivers completed measures of anxiety and depression, coping strategies, family resources, and parenting stress. Results: Mild to severe symptoms of depression were identified in 40% of caregivers and were a more prominent concern than symptoms of anxiety. Fewer family resources and high levels of parenting stress were significantly associated with both anxiety and depression. The association between parenting stress and depression was moderated by coping, such that parenting stress was associated with higher caregiver depression at low but not high levels of coping strategy use. Conclusions: Practitioners in Brazil should consider the role of family coping and resources as important resilience promoting factors in the development of new programs designed to promote psychological adaptation in caregivers to children with CZS. It is recommended that caregiver mental health support services be integrated into existing early intervention programs targeting children with CZS. Parents and other primary caregivers are encouraged to take an active role in the care and developmental monitoring of children born with CZS, but their ability to provide care may be compromised by difficulties in psychological adaptation. Moderate and severe symptoms of depression were more prominent in caregivers than moderate and severe symptoms of anxiety (20% versus 6%, respectively). Practitioners should include assessment of coping strategies, parenting stress and family resources conjointly with evaluation of symptoms of depression and anxiety as part of routine CZS family evaluations. A useful approach for caregivers in Brazil may be to more fully integrate caregiver mental health support services into existing early intervention programs for children with CZS.
Background: In Alzheimer’s disease, two fundamental aspects become important for caregivers: ambiguity and ambivalence. Thus, anticipatory grief is considered an active psychological process that is very different from the mere anticipation of death. The present study aims to determine which characteristics of family caregivers of people with dementia, such as age, gender, educational level, relationship with the person with dementia, years with dementia or years as a caregiver, are related to the presence of anticipatory grief. Methods: A cross-sectional design was employed. The sample consisted of a total of 129 subjects who cared for a family member with dementia. A sociodemographic data sheet and a battery of tests measure the presence of anticipatory grief, caregiver burden and/or psychopathology. Results: The results obtained allowed us to confirm some of the hypotheses regarding the anticipatory grief construct, the importance of the care time factor, in years and per day, as well as the relevance of the previous demographic and psychopathological profile (being female, spouse function and possible depressive symptomatology). Likewise, from the prediction analyzes performed, it seems that these variables can predict anticipatory grief. Conclusion: These results propose interesting opportunities to formulate care proposals to professionals and family caregivers in relation to care tasks and caregiver skills.
What Is Known on the Subject: Family members and friends (informal carers) are very important for providing support to people with mental health difficulties. When these carers are included to care planning patients seem to benefit, as they are less likely to relapse.; What the Paper Adds to Existing Knowledge: There are three types of interventions including carers in the patients'transition 1) programmes that offer education in hospital; 2) programmes that involve carers in planning the patients discharge; and 3) programmes that involve carers in hospital care, discharge planning and also follow-up in the community. Interventions including carers that take place both in the hospital and the community have the clearest evidence for benefit on relapse reduction.; What Are the Implications for Practice: Comprehensive interventions have the best evidence for effectiveness but challenges in their implementation and resourcing should be considered. It might worth trying to identify and test simpler interventions focusing on discharge planning that can be used in busy services and require more limited resources whilst providing opportunities for the participation of carers.;
Abstract: INTRODUCTION: Involving informal carers (family and friends of patients) in mental health interventions can lead to positive clinical and psychosocial outcomes such as relapse prevention or treatment adherence.; Aim/question: To explore the evidence on the effectiveness of different models that involve carers in the transition between hospital and community mental health care.; Methods: Five electronic databases (PsycINFO, CINAHL, MEDLINE, Embase and Scopus) and Grey literature (Open Grey and Grey Literature report) were systematically searched. The results were analysed using a narrative synthesis.; Results: Fourteen papers were identified. They described twelve interventions that were categorized into three groups: 1) purely educational programmes in preparation of discharge; 2) programmes that involved carers in planning the transition from the mental health inpatient treatment to community mental health services; and 3) programmes that bridged into the aftercare involving carers in community follow-up. The most comprehensive interventions, i.e. those including psychoeducation, care planning and aftercare follow-up were better evaluated and showed a clearer benefit in improving long-term outcomes and, in particular, reduce re-hospitalization.; Implications for Practice: Comprehensive interventions showed the clearest benefit in improving long-term clinical outcomes of patients. Future research should explore implementation, costs and cost-effectiveness, as comprehensive interventions delivered across different settings are likely to require wide-ranging organizational changes and significant resources.
This article describes the application of quality improvement (QI) to solve a long-standing, ongoing problem where service users or their carers felt they were not given enough information regarding diagnosis and medication during clinic assessments in a community mental health setting. Service users and carers had shared feedback that some of the information documented on clinic letters was not accurate and the service users were not given the opportunity to discuss these letters with the clinician. The aim of this QI project was to improve the communication between the community mental health team (CMHT) and service users and their carers. Wardown CMHT volunteered to take on this project. The stakeholders involved were the team manager and deputy manager, the team consultant, the team specialist registrar, team administrative manager, two carers and one service user. The project had access to QI learning and support through East London NHS Foundation Trust's QI programme. The team organised weekly meetings to brainstorm ideas, plan tests of change to review progress and to agree on the next course of action. The outcome was an increase in service user satisfaction from 59.9% to 78% over a period of 6 months, and a reduction in complaints to zero.
Introduction: Schizophrenia is one of the most devastating disorders, leading to long-term and progressive disability in numerous individuals. Disability reflects an interaction between features of a person's body and of the society. In all treatments, family psycho-education is also very important as disability of schizophrenia leads to burden upon family members. Caregiver burden can be either objective or subjective. Objective burdens are behavioural phenomena: disruption of the social activities and financial difficulties. Subjective burdens comprise emotional strain on caregivers. Due to the chronic nature of the disease and the disability, patients with schizophrenia as a group need most care in social and economic areas. Aim of the study: To assess the level of burden in caregivers of stable schizophrenia patients and their relation with degree of disability in schizophrenia patients. It was a cross-sectional and observation study. Material and methods: The study was carried out with 154 stable patients of International Classification of Diseases diagnosed schizophrenia and their primary caregivers. The patients were evaluated on the Indian Disability Evaluation and Assessment Scale (IDEAS) and Positive and Negative Syndrome Scale (PANSS), and the Burden Assessment Schedule (BAS) was used for their primary caregiver. Results: Two thirds of schizophrenia patients who were stable on medication for at least 6 months and diagnosed with schizophrenia for at least 2 years had mild (70.12%) and the rest had moderate disability (29.87%). Greater burden of care was experienced with increasing age. Conclusions: Caregivers' burden has a direct correlation with overall disability. Deficiency in interaction, communication and employment leads to more burden of care, but not a deficiency in self-care.
Stress associated with caring for a mentally ill spouse can adversely affect the health status of caregivers and their children. Adding to the stress of caregiving is the stigma often placed against spouses and children of people with mental illness. Contrary to mental illness, many physical disorders such as cancer may be less stigmatized (expect pulmonary cancer). In this study, we measured externalized and internalized stigma, as well as psychological (depressive symptoms and stressful life events) and physiological (basal salivary cortisol levels) markers of stress in 115 spouses and 154 children of parents suffering from major depressive disorder, cancer, or no illness (control group). The results show that spouses and children from families with parental depression present significantly more externalized stigma than spouses and children from families with parental cancer or no illness, although we find no group differences on internalized stigma. The analysis did not show a significant group difference either for spouses or their children on depressive symptomatology, although spouses from the parental depression group reported greater work/family stress. Finally, we found that although for both spouses children the awakening cortisol response was greater on weekdays than on weekend days, salivary cortisol levels did not differ between groups. Bayes factor calculated on the null result for cortisol levels was greater than 100, providing strong evidence for the null hypothesis H0. Altogether, these results suggest an impact of stigma toward mental health disorder on psychological markers of stress but no impact of stigma on physiological markers of stress. We suggest that these results may be due to the characteristics of the families who participated in the present study.
Background and objectives Family caregivers play a curial role in supporting and caring for their mentally ill relatives. Their struggle for facing stigma and shouldering caregiving burden is marginalized, undervalued, and invisible to medical services. This study assessed the stigma and burden of mental illnesses, and their correlates among family caregivers of mentally ill patients. Methods A cross-sectional study design was used to collect data from 425 main family caregivers of mentally ill patients at Assiut University Hospital. A structured interview questionnaire was designed to collect socio-demographic data of both patients and their caregivers. Stigma scale for caregivers of people with mental illness (CPMI) was used to assess the affiliate stigma, while the associative stigma was assessed by the explanatory model interview catalogue stigma scale (EMIC-Stigma scale). The caregivers' burden was assessed using Zarit burden Interview, and Modified Attitude toward Mental Illness Questionnaire was used to assess caregivers' knowledge and attitude towards mental illness. Results Bipolar disorder (48%) and schizophrenia/other related psychotic disorders (42.8%) were the most common mental illnesses among the study patients. The mean scores of CPMI total scale, EMIC-Stigma scale, and Zarit Burden scale were 56.80 +/- 7.99, 13.81 +/- 5.42, and 55.20 +/- 9.82, respectively. The significant correlates for affiliate stigma were being parents of patients (ss = 4.529, p < 0.001), having higher associate stigma (ss = 0.793, p < 0.001), and aggressive behavior of mentally ill patients (ss = 1.343, p = 0.038). The significant correlates for associate stigma of the study caregivers were being caregivers' relatives other than parents (ss = 1.815, p = 0.006), having high affiliate stigma (ss = 0.431, p < 0.001), having poor knowledge and negative attitude towards mental illness (ss = - 0.158, p = 0.002), and aggressive behavior of mentally ill relatives (ss = 1.332, p = 0.005). The correlates for the high burden were being male (ss = 3.638, p = 0.006), non-educated caregiver (ss = 1.864, p = 0.045), having high affiliate stigma (ss = 0.467, p < 0.001), having high associative stigma (ss = 0.409, p < 0.001), having poor knowledge and negative attitude toward mental illness (ss = - 0.221, p = 0.021), seeking traditional healers and non-psychiatrist's care from the start (ss = 2.378, p = 0.018), and caring after young mentally ill relatives (ss = - 0.136, p = 0.003). Conclusion The studied caregivers suffered from stigma and a high level of burden. Psycho-educational programs directed toward family caregivers are highly recommended.
Aims To test a multiple mediation model of internalized stigma and caregiving burden in the relationship between severity of illness and distress among family caregivers of persons living with schizophrenia. Design This is a cross-sectional study. Methods Data were collected from a consecutive sample of 344 Chinese family caregivers of persons living with schizophrenia between April-August 2018. Instruments used in this research included the Clinical Global Impression-Severity of Illness, the Internalized Stigma of Mental Illness Scale, the Caregiver Burden Inventory, and the Distress Thermometer. Data analysis was conducted using descriptive statistics, the Spearman correlation, and regression analysis to estimate direct and indirect effects using bootstrap analysis. Results This research found that internalized stigma and caregiving burden can separately and sequentially mediate the relationship between severity of illness and distress. Moreover the mediation of internalized stigma plays the largest role among the multiple mediations. Conclusion The severity of illness, internalized stigma, and caregiving burden are significant factors of distress among family caregivers of persons living with schizophrenia. The future intervention studies which be designed aiming at the three factors may be beneficial for family caregivers of persons living with schizophrenia. Impact This research examined the psychosocial development of distress and indicated that interventions improving patients' symptoms and decreasing internalized stigma and caregiving burden can help to prevent or reduce distress among family caregivers.
Informal caregivers have a leading role when implementing health care services for people with cognitive disorders living at home. This study aims to examine the current evidence for interventions with dual satisfaction with health care services for people with cognitive disorders and their caregivers. Original papers with quantitative and mixed method designs were extracted from two databases, covering years 2009-2018. Thirty-five original papers reported on satisfaction with health care services. The International Classification of Health Interventions (ICHI) was used to classify the interventions. Most interventions had a home-based approach (80%). Reduction in caregiver depression was the outcome measure with the highest level of satisfaction. Interventions to reduce depression or increase cognitive performance in persons with cognitive disorders gave the least satisfaction. Satisfaction of both caregivers and persons with cognitive disorders increased their use of services. In the ICHI, nearly 50% of the interventions were classified as activities and participation. A limited number of interventions have a positive effect on satisfaction of both the persons with cognitive disorders and the caregiver. It is important to focus on interventions that will benefit both simultaneously. More research is needed with a clear definition of satisfaction and the use of the ICHI guidelines.
Facilitated self-help and problem-solving strategies can empower and support family carers to cope with caregiving for people with severe mental illnesses. This single-blind multi-site randomised controlled trial examined the effects of a five-month family-facilitated problem-solving based self-learning program (PBSP in addition to usual care), versus a family psychoeducation group program and usual psychiatric care only in recent-onset psychosis, with a six-month follow-up. In each of three study sites (integrated community centres for mental wellness), 114 people with early psychosis (≤5 years illness onset) and their family carers were randomly selected and allocated to one of three study groups ( n = 38). Caregiving burden (primary outcome) and patients' and carers' health conditions were assessed at recruitment, and one-month and six-months post-intervention. Overall, 106 (94.7%) participants completed the assigned intervention and ≥1 post-test. Generalised estimating equations and subsequent contrast tests indicated that the PBSP participants showed significantly greater improvements in carers' burden, caregiving experiences and problem-solving ability, and patients' psychotic symptoms, recovery, and duration of re-hospitalisations over the six-month follow-up, compared with the other two groups (moderate to large effect size, η 2 = 0.12-0.24). Family-assisted problem-solving based self-learning programs were found to be effective to improve both psychotic patients' and their carers' psychosocial health over a medium term, thus reducing patients' risk of relapse.
Background: Management of schizophrenia is now shifted to the community setting and family caregivers are the primary caregivers. Managing medications is a complex responsibility of family caregivers caring for patients with mental illness. Medication compliance contributes to improve health outcomes and reduced hospitalization for the care service users; however, little is known about attitudes and perception of family caregivers. Aims and objectives: To explore family caregivers experience towards antipsychotic medications. Methods: A purposeful sampling of 21 family caregivers was included in the study. Semi-structured interview was employed to collect data from the participants between May and October 2015. Thematic analysis approach was used to identify the common pattern in the data. Results: Four main themes emerged from the study: insight into illness (poor understanding of illness), treatment factor (thinking about medication, poor guidance for medication compliance), resources and support (availability of medication and cost of medication), health care provider factors (communication gap and poor assessment with follow-up, social dysfunction (social isolation, disruption in life routine) of the primary caregivers. Conclusions: Responsibility for providing care for patients with mental illness are taken place in the community setting and cared by family caregivers. More information resources are required for this role, which requires specific medication management skills and knowledge.
The present study is one of the first attempts to examine the connection of physical activity with the mental health of people that care for family members with mental illness. Caregiving is a load with negative effects on well-being but caring for a family member with mental illness results to a higher psychological burden, due to other factors involved (i.e. stigma). Physical activity and exercise have been found to be variables that lead to better quality of life for caregivers in many chronic illnesses. The participants of the study were 300 caregivers of patients with mental illness - family members (96 men, 204 women) of a mean age 60.64 (+/- 10.08) years old. They were administered the Leisure Time Physical Activity questionnaire and according to their responses, they were divided in two groups: physically active and sedentary. Mental health was assessed using the DASS 21 questionnaire, with three subscales: depression, anxiety and stress. According to the results of the one-way MANOVA, physically active caregivers had a better score than their sedentary counterparts on all three DASS 21 subscales: anxiety (p < .001), stress (p < .01), depressive symptoms (p <.001). According to the results, physical activity and exercise of even low intensity, seems to play an important role on caregivers' mental health by leading to reduced stress, anxiety and depressive symptoms. Although more research is needed in this area, it seems that physical activity interventions should be considered as an additional type of support offered to caregivers of mental ill patients.
Objectives: To examine perceived stigma and its correlates in remitted patients with mental illnesses and their caregivers.; Methods: In patients with mental illnesses, their perceived stigma (Perceived Devaluation Discrimination Scale), endorsed secrecy (Secrecy scale), self-esteem (Rosenberg Self-Esteem Scale), functioning (Work Social Adjustment Scale), and emotional wellbeing (Well Being Index) were assessed. In caregivers, their perceived stigma towards patients (Devaluation of Consumer Scale) and families (Devaluation of Consumer Families Scale), emotional wellbeing (Well Being Index), and depressive symptoms (Centre for Epidemiological Studies-Depression scale) were assessed. Differences between diagnoses were examined using ANOVA. Correlation between perceived stigma among patients and caregivers was studied.; Results: Of 152 patients with mental illnesses, 76.3% and 85.53 % reported moderate-to-high levels of perceived stigma and endorsed secrecy, respectively. Of 152 caregivers, 40.13% and 25.65% reported moderate-to-high levels of perceived stigma towards patients and families, respectively. Overall, patients had high levels of perceived stigma and endorsed secrecy, low self-esteem, moderate functional impairment, and extremely poor emotional wellbeing. There were significant differences across different diagnostic categories with respect to self-esteem, functioning, perceived stigma, secrecy, and emotional wellbeing. Patients with substance use disorders reported highest perceived stigma, lowest self-esteem, and most severe functional impairment, and their caregivers reported highest perceived stigma towards patients and families, most-reduced emotional wellbeing, and highest rates of depressive symptoms. Patients' perceived stigma was not associated with caregivers' perceived stigma.; Conclusion: Perceived stigma is prevalent among patients and caregivers and affects their quality of life. The stigma associated with substance use disorder merits special attention.
Pathological narcissism is characterized by impaired interpersonal functioning, but few studies have examined the impact of the disorder on those living in a close relationship. Participants (N = 683; comprising romantic partners [77.8%], mothers [8.5%] or other family members [10%]) in a close relationship with a relative with pathological narcissism completed measures assessing levels of grief, burden, mental health, and coping style. Participants' reported burden was over 1.5 standard deviations above comparison carers of people with mood, neurotic, or psychotic disorders, and higher than carers of people with borderline personality disorder. Similarly, caseness for depression (69% of sample) or anxiety disorders (82%) in the sample was high. Relationship type, subtype expression (vulnerable/grandiose), and coping style were all found to significantly relate to experienced psychopathology. Although limitations exist regarding sample selection that may influence interpretation of results, these findings quantify the significant interpersonal impact of pathological narcissism in this sample.
Demographic changes have placed age-related mental health disorders at the forefront of public health challenges over the next three decades worldwide. Within the context of cognitive impairment and neurocognitive disorders among elderly people, the fragmentation of the self is associated with existential suffering, loss of meaning and dignity for the patient, as well as with a significant burden for the caregiver. Psychosocial interventions are part of a person-centered approach to cognitive impairment (including early stage dementia and dementia). Dignity therapy (DT) is a therapeutic intervention that has been shown to be effective in reducing existential distress, mood, and anxiety symptoms and improving dignity in persons with cancer and other terminal conditions in palliative care settings. The aims of this paper were: (i) To briefly summarize key issues and challenges related to care in gerontology considering specifically frail elderly/elderly with cognitive decline and their caregivers; and (ii) to provide a narrative review of the recent knowledge and evidence on DT in the elderly population with cognitive impairment. We searched the electronic data base (CINAHL, SCOPUS, PSycInfo, and PubMed studies) for studies regarding the application of DT in the elderly. Additionally, given the caregiver's role as a custodian of diachronic unity of the cared-for and the need to help caregivers to cope with their own existential distress and anticipatory grief, we also propose a DT-dyadic approach addressing the needs of the family as a whole.
Background: Caregiving to patients with schizophrenia is burdensome for family caregivers and has profound effects on them. Objectives: This study aimed to explore the impacts of informal caregiving among the family caregivers of patients with schizophrenia. Methods: This qualitative study was conducted on a purposive sample of 12 family caregivers of patients with schizophrenia and 3 health-care providers. Semi-structured interviews were held for data collection, and conventional content analysis was used for data analysis. Results: Four main subthemes were developed during data analysis, namely threatened health, helplessness, patient abandonment, and personal growth. Together with their eight subcategories, these subthemes were grouped into the main theme of the "Consequences of caregiving burden." Conclusion: Caregiving to patients with schizophrenia imposes heavy burden on family caregivers and has different consequences for them. The findings of this study can improve the knowledge and awareness of mental health and psychiatric nurses about schizophrenia and its consequences for family caregivers and can help them identify family caregivers who are at risk for negative consequences and design proper family-based interventions to reduce the effects of these negative consequences.
To describe the impact of the COVID-19 pandemic on help-seeking behaviors among individuals with eating disorders and caregivers. We analyzed service utilization data from the National Eating Disorder Information Centre (NEDIC). We compared the number of contacts and symptom frequency between the pandemic period and previous years. NEDIC was contacted 609 times during March 1–April 30, 2020 (72.1% individuals affected by disordered eating, 20.4% caregivers). The number of total contacts significantly increased from 2018 to 2019 and 2018 to 2020 (X2(3) = 50.34, p <.001). Among affected individuals (80.4% women), the number of contacts during the pandemic period was significantly higher (n = 439; X2(2) = 92.74, p <.001) compared to 2018 (n = 197) and 2019 (n = 312). There were higher rates of eating disorder symptoms, anxiety, and depression in 2020 compared to previous years. Thematic analysis of instant chats from the pandemic year revealed four emerging themes: 1) lack of access to treatment, 2) worsening of symptoms, 3) feeling out of control, and 4) need for support. These findings point toward the impact of COVID-19 in individuals affected by disordered eating and hold implications for service delivery during times of crises.
This is a cross-sectional study conducted with 537 family caregivers of people with mental disorders. The objective was to quantify the degree of burden experienced by men and women, and identify the most affected dimensions of their lives and the factors associated with burden manifestation by gender. The Zarit Burden Interview (ZBI) scale was used to assess burden. Mean burden was 22.8 points (SD = 6.3) for men and 27.8 points (SD = 17.8) for women. The most affected dimensions among the two groups were the same; however, among the 22 items on the scale, 11 presented significantly higher means among women. The factors associated with the manifestation of burden in both groups were as follows: low income; use of psychotropic drugs; greater degree of dependence of the service user; not receiving family support; and dissatisfaction with family relationships. For men, manifestation of burden was also associated with age. For women, there were further associations of the outcome with the presence of health problems, not having someone to share care with, and caring for the assisted person for >10 years. Our findings suggest that the degree of burden of family members caring for those with mental disorders is associated with gender, and this should be considered by services responsible for planning care shared by professionals and relatives. Guidelines for Strengthening the Reporting of Observational Studies in Epidemiology (STROBE Statement) were adhered to in this study.
WHAT IS KNOWN ON THE SUBJECT?: Adults who support an adult family member with a severe and enduring mental health problem often experience carer burden. Over time, this often negatively affects their mental and physical health and social well-being. Understanding and communicating about mental health problems in families can help to improve resilience and coping among both adults and children. WHAT DOES THIS PAPER ADD TO EXISTING KNOWLEDGE?: We conducted a review of studies looking at how adult relatives understand and communicate about an adult family member's mental health problem. The findings highlight that how relatives make sense of MHP is related to historical family relationships, their mental health literacy and whether they see themselves as a "carer" or not. The findings also show that little research to date has explored how adult relatives talk with children about their parent's difficulties, and how the adults' understanding might affect what children learn about the MHP. WHAT ARE THE IMPLICATIONS FOR PRACTICE?: There is a research gap to be addressed regarding family communication with children about parental mental health problems. This knowledge gap likely impacts family-focused mental health nursing and therapy provision. Mental health nursing, therapeutic and support workers and advocates are ideally positioned to assist relatives with improving their mental health literacy and confidence communicating about mental health, and to promote inclusion of relatives and children in interventions.
ABSTRACT: Introduction Relatives are profoundly affected by an adult family member's severe and enduring mental health problem (MHP). The burdens of caring impact on adult relatives' emotional, physical and social well-being. How relatives make meaning and communicate about the MHP is thought to affect family talk about mental health, and this can impact family coping and well-being. Aim No review has yet drawn together research about how adult relatives of people with severe and enduring MHP make meaning and communicate about their relatives' difficulties. We aimed to address this gap. Method We conducted a systematic review of peer-reviewed primary research. SCOPUS, PubMed, Psychnet, SCIE, Cochrane and CINAHL+ databases were searched. Results Nineteen papers qualified for inclusion. Findings are organized under four themes: making meaning about the MHP and affected individual; conceptualizing the self in the presence of the MHP; meaning-making processes underlying relatives' well-being outcomes; and relatives' perspectives on family talk about the MHP. Discussion Historical relationships, caregiver identity and mental health literacy moderate relatives' understanding and talk about the MHP. Implications for practice Psychoeducation and communication support for relatives should be provided by mental health practitioners. Future research should address familial communication about MHP, including with children.
Objective: To explore caregivers' perspective on factors affecting the recovery of their family members diagnosed with schizophrenia.; Methods: A qualitative grounded theory approach was used. A convenience sample of seven male and eleven female family caregivers of patients with schizophrenia were invited from outpatient (n = 6), inpatient (n = 7), and psychiatric rehabilitation (n = 5) services in an Indian mental health institute to participate in semi-structured interviews. Interviews were recorded, transcribed, and analysed. Similar themes were grouped and the main themes identified.; Results: Caregivers' perspectives on factors affecting recovery from schizophrenia were categorised to two themes: facilitators and barriers. The nine facilitators were (1) getting into a precise treatment regimen and sticking to it, (2) developing some personal attributes, (3) exercising family's role diametrically, (4) paying attention to basic needs, (5) sharing with the Almighty, (6) adapting to a supportive lifestyle, (7) not being idle… engage in something, (8) coming out, being and sharing with others, and (9) having adequate resources with a good support system. The ten barriers were (1) detrimental treatment practices, (2) hampering illness impacts, (3) off-putting personality elements, (4) unaccommodating family circumstances, (5) caregivers' limitation, (6) flaccid support system and scarce resources, (7) ambiguous treatment outcome or prognosis, (8) futile religious, health, and social belief systems, (9) situational factors, and (10) presence of troubling physical or psychological stressors.; Conclusion: The recovery process is facilitated through family involvement and support by mental health professionals. Thus, giving a pre-treatment counselling to the caregivers and repeating the same content to the patients after regaining insight can be helpful.
Background - Family carers with mental illness is an integral form of care in our nation as in most Non-Western countries. With limited mental health institutions facilities, the care-givers involve various activities in furnishing care for clients with psychological disturbances. The care-givers from the family of mentally ill undergone significant trouble because of the care-giving responsibility they participate in and required assistance from mental health professionals if they face any emotional or psychological alterations. Objective - To evaluate the baseline mental health of care givers of mentally ill. To develop self help-mental health promotion model for the care givers of mentally ill. Evaluate the efficacy of self help mental health promotion model on mental health of care givers of mentally ill Methodology - A pre experimental one group pre-test and post-test design was adopted to assess the efficacy of self help mental health promotion model among the care givers of mentally ill. In this study, interventional analytical study will be used. Purposive sampling technique will be used to collect data. Selected care givers of mentally ill will be assessed primarily for positive mental health of care givers by the WEBMW scale to measure the mental wellbeing of care givers of mentally ill. And to evaluate psychological morbidities of the care givers of mentally ill will be assessed by using GM-HAT PC Marathi version. And then structured counselling programme will be given to selected sample by Self Help Mental Health Promotion Model developed by researcher as intervention. Secondary outcomes involve evaluation of efficacy of self help mental health promotion model. IEC approval was obtained from Institutional Ethics Committee, Dutta Meghe Institute of Medical Sciences (Deemed to be University)/IEC/ JUNE-2018/7345). Expected Results: This study is mainly planned to evaluate the improvement in mental health of care givers of mentally ill with the help of self help mental health promotion model, hence it will be assessed by Global Mental Health Assessment Tool and Warwick-Edinburgh Mental Well Being Scale. After 28th days of intervention the level of stress reduced down around 60%.
Acceptance and commitment therapy (ACT) is an emerging evidenced-based practice based on a psychological flexibility model encompassing six processes, including acceptance, cognitive defusion, self-as-context, being present, values, and committed action. ACT aims to improve overall psychological flexibility and the six processes. This systematic review and meta-analysis examined the effects of ACT on measures of purported processes among family caregivers. Four electronic databases were searched from the date of inception of each database to March 30, 2020. A total of 18 studies met the eligibility criteria, including 8 randomized controlled trials (RCTs), 1 nonrandomized control group pretest-posttest design study, and 9 one group pretest-posttest design studies. A meta-analysis of 8 RCTs found a moderate effect of ACT on psychological flexibility among family caregivers at the immediate posttest and follow-up. A meta-analysis of 9 one group pretest-posttest design studies showed a large effect of ACT on psychological flexibility at the immediate posttest and follow-up. No significant effect was found in measures of cognitive fusion, valued living, and mindfulness except for a meta-analysis of 2 RCTs showing a small effect of ACT on cognitive fusion at follow-up. This review discusses synthesized findings, a gap in the literature, and suggestions for future studies.
Background: Considering the importance of family participation in patients' treatment and the positive effects of simultaneous patient and family education, this study was conducted to determine the effect of a family and patient-oriented empowerment program on depression, anxiety, and stress in patients with Obsessive-Compulsive Disorder (OCD) and their caregivers' burden. Materials and Methods: This quasi-experimental study was conducted on 50 OCD patients along with their primary caregivers. The intervention group participated in eight sessions of training, each lasting from 60 to 90 min (twice a week), and the control group received the usual treatment. The Depression, Anxiety and Stress Scale, Maudsley's Obsessive-Compulsive Inventory, Goldberg's General Health Questionnaire, and Zarit's Burden Inventory were used to collect the data before, immediately after and 1 month after the intervention, and then the gathered data were analyzed with t-test and analysis of variance using the Statistical Package for the Social Sciences software, version 21. Results: The changes in the mean scores of depression (F2,48= 21.02, p < 0.001), anxiety (F2,48= 29.72, p < 0.001), and stress (F2,48= 16.52, p < 0.001) of the patients in the intervention group showed significant decrease over time; however, in the control group, there was no significant decrease in the mean scores of depression (F2,48= 1.69, p = 0.19), anxiety (F2,48= 0.47, p = 0.62), and stress (F2,48= 1.09, p = 0.34) over time. The changes in the caregiver's burden score in both groups indicated a significant decrease over time in the intervention group (F2,48= 24.70, p < 0.001) and the control group (F2,48= 33. 30, p < 0.001). Conclusions: The findings of this study revealed that concurrently training the patients and caregivers could reduce the negative emotions of the patients and their caregivers' burden.
Objective: Obsessive-compulsive disorder (OCD) is one of the leading causes of disability and poor quality of life, with impairment in many areas. It can also adversely affect family members and friends that the person lives with, and this results in a burden. We aimed to evaluate the disease burden in caregivers of patients with OCD and the factors that negatively affect caregiver burden. Method: The study population consisted of 94 patients with OCD and their caregivers. The Yale-Brown Obsessive-Compulsive Scale (YBOCS), the Hamilton Depression Rating Scale, and the World Health Organization Quality of Life Questionnaire Brief Form were filled out by the patients, and the Burden Assessment Scale (BAS) by the caregivers. Results: Longer duration of treatment, higher YBOCS obsession and compulsion scores of the patients, and lower environmental quality of life dimension scores of the patients were found to increase the BAS scores of the caregivers. Additionally, these variables were found to be significant predictors for disease burden (BAS score) (p<0.05). Conclusion: Our study revealed that many variables affect burden, even in caregivers who have no extra burden (who has no disease to cause a burden). Caregivers of patients with OCD should be included in the behavioral and pharmacologic treatment process for the benefit of both the OCD treatment management and the protection of family health.
The fluctuation of psychological conditions among people with mental disorders are suspected to burden the family caregiver. Horticultural therapy has been known as an effective complementary therapy to enhance people mental health. Family assistance in the implementation of horticultural therapy is a form of family caring which contributes greatly in determining the achievement of horticultural therapy goals. However, not many previous studies have explored family experiences when accompanying family members who suffer from mental disorders in undergoing horticultural therapy.This study aims to explore family experiences when accompanying family members who suffer from mental disorders when undertaking horticultural therapy. Qualitative research using a hermeneutic phenomenology approach was conducted in 5 homes of people with mental disorders who had experienced horticultural therapy. Five family participants were selected by purposive sampling and considered data saturation. Family data were analyzed by using data analysis content. Interview notes are read repeatedly to identify data saturation and formulate the unit of analysis. Furthermore, the data is structured through the coding phase, followed by formulating categories and abstracting them to obtain a brief overview. To guarantee the validity of the data, this study pays attention to its credibility, confirmability, dependability, transferability and authenticity. The results of the study indicate that the family is aware that while assisting the patients during horticultural therapy, the family must have strong motivation, patience, sincerity and confidence. It is proven that the patient's self-confidence, ability to interact and communicate shows positive development after undertaking horticultural therapy.As one form of complementary therapy, the sustainability of horticultural therapy should be done continuously by the health care provider accompanied by family support.
Background/Aims: Caregivers perform an important role but caring affects other roles they perform, resulting in poor time management and reduced quality of life. This study aimed to compare the time-use patterns and self-efficacy of caregivers of two groups of patients with chronic disease: those with a diagnosis of mental illness and those without a diagnosis of mental illness. Methods: Family caregivers of patients with a chronic disease who were aged between 20–60 years, resident in Arak, not taking care of another patient and literate were eligible to participate. The presence of mental illness was based on a psychiatrist's diagnosis at least 6 months before the study. The Mothers' Time Use Questionnaire, Sherer Self-efficacy Scale and a demographic questionnaire were used to capture data relating to time-use, self-efficacy and participant characteristics. Data were analysed using independent t-test and Mann–Whitney U test to identify and compare time-use patterns and self-efficacy. Results: There were no significant between-group differences in demographics or mean time-use scores in six domains (rest/sleep, leisure, housework, work/occupation, social participation and satisfaction with time management). Self-care time-use scores (time, quality, importance and enjoyment) were significantly higher for caregivers of patients with chronic disease with a diagnosis of mental illness. Patient care time-use scores were significantly higher for caregivers of patients with chronic disease without a diagnosis of mental illness. Mean self-efficacy score was significantly higher in the group caring for patients with a diagnosis of psychiatric disease. Conclusions: Chronic physical illnesses may result in greater dependence on caregivers than mental illness, increasing the amount of time spent on care and reducing caregiver self-efficacy.
The South African Mental Health Act of 2002 advocates the de-institutionalization of treatment of patients with mental disorders, so that the mental health care users or patients are treated in their communities. Although this approach is often used to discharge patients from hospital, no feasibility assessments are conducted to ascertain adequate care for these patients. The objective of the study was to explore the experiences of family members who provide home care for patients with serious mental disorders. A qualitative explorative design was used to interview 20 primary caregivers whose family members were readmitted to a public psychiatric hospital in Pretoria. Data were analysed using NVivo version 11. The findings are that caring for patients with serious mental illness at home is difficult, sometimes unbearable, because the families have to deal with violence perpetrated by the patients, safety concerns, financial difficulties and emotional turmoil, and wish that the patients would be kept in institutions. The absence of required skills and resources to care for the mentally ill at home exposes the patients and their families to emotional, financial and social difficulties, and results in unfavourable outcomes for both the patients and their families.
Background: According to the literature reviewed, although families living with a mentally ill relative often face violence, this issue has been little studied in nursing. Methods: We conducted a qualitative research study to explore the experience of families dealing with this complex reality. We adopted Jacques Donzelot's theory of the government of family as our theoretical framework and used grounded theory as our research methodology. In total, 14 participants who had been victims of violence perpetrated by relatives with severe mental illness were interviewed. Findings: Qualitative analysis led to the identification of five themes: (a) medico-legal apparatus; (b) experience of violence; (c) the family's responsibility toward the violent relative; (d) exclusion and stigmatisation; and (e) suffering and resilience. The present paper focuses on the study's central theme: the family's responsibility toward the violent relative.
Background: Close relatives of people with severe mental illness (SMI) experience problems known as family burdens. In addition, they may have their own needs for support, something often overlooked by the healthcare system. Meta-syntheses in this area may help explore the meaning of the experience of living with someone who has a SMI. Aim: Our aim was to describe the burdens experienced and needs perceived on a daily basis by relatives to someone who has a SMI. Methods: The databases PubMed, CINAHL, and PsychInfo were searched using a systematic search strategy. Studies were screened for relevance and quality was appraised. A meta-synthesis of nine qualitative studies was then conducted. Results: The nine studies discerned the following themes. Burden themes; Forced to carry a sometimes unbearable burden; Burdened by own ill-health and disrupted relationships; Distressed and stigmatized by society. Needs themes; strengthening protective factors; Skills and practical support greatly appreciated. Conclusions: The burdens and needs of relatives of persons with SMI strongly influence their lives. They require relief from both practical and emotional burdens. Family interventions and other programs to support relatives should be encouraged with this knowledge in mind.
This study assessed grief in caregivers of family members with alcohol use disorder (AUD) and substance use disorder (SUD) using the Marwit-Meuser Caregiver Grief Inventory Short Form (MM-CGI-SF). We used snowball sampling to recruit participants who had family members with AUD and SUD. The sample was comprised of 100 caregivers of family members with AUD and 75 caregivers of family members with SUD. The original MM-CFI-SF was modified by changing the wording to reflect those with AUD and SUD. The 18-item instrument consisted of 3 factors: personal sacrifice burden, sadness and longing, and worry and felt isolation. The professional care of caregivers with family members with AUD and SUD should be addressed by health professionals in the same manner as dementia caregivers. AUD and SUD caregivers may also downplay the distress, require social support, or have a common reaction to the stress and grief encountered. The correlations were moderate to strong and significant between each of the factors for both AUD and SUD caregiver scale.
This study examined the multidimensional nature of experiences of being an intimate partner of an Australian veteran or emergency service first responder (ESFR) with posttraumatic stress disorder (PTSD). Using a qualitative phenomenological approach, inductive thematic analysis was undertaken on data collected in 2017–2018 through individual interviews with a purposive sample of 22 partners of veterans, paramedics, fire and police officers living in Australia. Analysis revealed that the key concern of the participants was to protect their family unit and the intimate relationship, highlighting the ways in which they adapted, managed and coped with the changes that PTSD brought to the relationship. However, lack of understanding by healthcare providers, government, military and emergency service organizations of their daily lives, and of the strength of commitment to their relationship, resulted in a sense of invisibility and was revealed as the key barrier to the support they crave. The findings underscore the importance of recognizing the significance of the intimate relationship in trauma recovery and of responding to the support needs of the intimate partner.
People with schizophrenia have an increased risk of experiencing physical ill health and thus risk premature death. It is important to gain knowledge about the next-of-kin's experiences of lifestyle interventions in order to increase the understanding of the development of health promotion. This study aimed to describe the experiences of next-of-kin of lifestyle interventions for people with schizophrenia. Ten next-of-kin to people diagnosed with schizophrenia were interviewed and content analysis was used to analyze the data. Three categories emerged in the analysis: Low prioritization of physical health, Patients' needs for motivational support and Next-of-kin's' limited and distant participation. Mental health nurses need a holistic view of human beings and to include the patients' physical health and the role of the family in their responsibilities. Further studies are needed that focus on the views of the next-of-kin and the staff from the mental health services about the care and support needs for promoting physical health in this patient group.
Across the world, people living with schizophrenia (PLS) are often cared for by family caregivers. This is especially true in China where community-based systems of care for PLS are underdeveloped. Thus, family caregivers of PLS may experience emotional distress and burden in the absence of community-based services. Pearlin (1990) proposed a highly influential model for understanding the stress process and its relationship to health and wellbeing. Although the model has been examined worldwide, it has yet to be studied in China for caregivers of PLS. In the present study, we use Pearlin's stress process model to examine the mediating effect of perceived caregiver burden, family functioning, and caregivers' positive feelings about caregiving on PLS global functioning and caregiver depressive symptoms. We also examine whether the model differs for parent and spouse caregivers. A total of 327 primary family caregivers of PLS in Hunan province, China, were assessed cross-sectionally using culturally-validated measures. Bootstrap methods with Hayes's PROCESS Macro were used to test multiple mediation models of global functioning scores of PLS and caregiver depressive symptoms. In this first study of the stress process model of family caregivers of PLS in China, the results generally support the model. Caregiver perceived burden, family functioning, and positive caregiver feelings about caregiving all mediate the relationship between PLS global functioning and caregiver depression, with perceived caregiver burden having the strongest indirect effect. Analyses also show that the stress process differs between parent and spouse caregivers, with perceived caregiver burden a mediator for both groups but family functioning only a mediator for parent depressive symptoms. We discuss implications of these findings for extending the stress process model cross-culturally; suggest hypotheses for future research to examine parent and spouse differences; and discuss fruitful directions for intervention. • Test of the stress process model of family caregivers of persons living with schizophrenia (PLS) in China. • Results support the model with caregiver depressive symptoms predicted by global functioning of the PLS. • Caregiver burden, family functioning, and caregiver rewarding feelings mediate caregiver depressive symptoms. • The stress process model differs for parent and spouse caregivers.
Purpose: Household poverty associated with schizophrenia has been long described. However, the mechanisms by which schizophrenia may have influenced the economic status of a household in rural communities are still unclear. This study aimed to test an integrated model of schizophrenia, social support and caregiving burden on household poverty in a rural community in China. Methods: A mental health survey using identical methods and ICD-10 was conducted in six townships of Xinjin County (population ≥ 15 years old, n = 152,776), Chengdu, China in 2015. Identified persons with schizophrenia (n = 661) and their caregivers completed a joint questionnaire of sociodemographic information, illness conditions, social support and caregiving burden. Descriptive analysis was applied first to give an overview of the dataset. Then, multivariable regression analyses were conducted to examine the associative factors of social support, caregiving burden and household income. Then, structural equation modeling (SEM) was used to estimate the integrated model of schizophrenia, social support, caregiving burden and household income. Results: Households with patient being female, married, able to work and having better social function were better off. Larger household size, higher social support and lower caregiving burden also had salient association with higher household income. The relationship between schizophrenia and household poverty appeared to be mediated by the impacts of schizophrenia on social support and caregiving burden. Conclusion: There was a strong association between schizophrenia and household poverty, in which social support and caregiving burden may had played significant roles on mediating it. More precise poverty alleviation policies and interventions should focus on supporting recovery for persons with schizophrenia, as well as on increasing social support and on reducing family caregiving burden.
Objective: To synthesise qualitative research that explored caregivers' experiences of caring for family diagnosed with schizophrenia. Methods: Electronic databases including PsycINFO, PubMed, CINAHL and Scopus were searched to identify relevant journal articles published from 2000 to March 2019. Quality was assessed and thematic synthesis of the qualitative research evidence undertaken. Papers were screened and independently appraised by two reviewers using The Critical Appraisal Skills Programme (CASP) for Qualitative Studies Checklist. The review was guided by Thomas and Harden's framework for thematic synthesis of qualitative research evidence. Results: The breadth of information across the 43 papers was noteworthy. Review of the findings noted that almost all of what was discussed fell into three broad themes: the 'feelings' of the caregiver towards their role, the patient and others, including the health system; the 'impacts' of the diagnosis and their caregiving role on the caregiver; and the 'needs' of the caregiver to improve the patient's quality of life and thereby the caregiver's quality of life. Within needs also came recommendations for future changes. Conclusion: Studies have shown that the caregiving process is a complex one, with both negative and positive emotional reactions, societal barriers, such as stigma and isolation, and unmet needs, such as timely, relevant and helpful information. Meeting the needs identified by caregivers has the capacity to address the impacts of the illness and caregiving and thereby reduce the negative feelings associated with the caregiver role.
Purpose Families play an instrumental role in helping relatives experiencing mental health issues to stay well. In the context of wider initiatives promoting family and carer needs, this study aims to evaluate the feasibility, acceptability and potential benefits of bespoke training to develop clinicians’ skills in working with families in crisis. Design/methodology/approach The study was an uncontrolled evaluation of a one-day workshop for home treatment team staff using pre- and post-questionnaires. Findings In total, 83 staff members participated. Overall, there was a strong agreement for the involvement of families, which increased marginally after training. There were significant changes in views about talking to family members without service user consent (p = 0.001) and keeping them informed of their relative’s well-being (p = 0.02). Qualitative feedback indicated that participants enjoyed the interactive elements, particularly role-playing. Training provided an opportunity to practice skills, share knowledge and facilitate the integration of family work into their professional role. Research limitations/implications Confident support for families contributes to effective mediation of crisis and continuation of care; factors important in reducing admission rates and protecting interpersonal relationships. Overall, the consistency of responses obtained from participants suggests that this workshop offers a helpful introduction to a family approach at times of a mental health crisis. Originality/value This pilot evaluation suggests this new one-day workshop, is a feasible and acceptable training program, which is beneficial in developing clinicians’ skills in working with families in a crisis.
Mechanisms underlying the manifestation of relatives' expressed emotion (EE) in the early stages of psychosis are still not properly understood. The present study aimed to examine whether relatives' psychological distress and subjective appraisals of the illness predicted EE dimensions over-and-above patients' poor clinical and functional status. Baseline patient-related variables and relatives attributes comprising criticism, emotional over-involvement (EOI), psychological distress, and illness attributions were assessed in 91 early psychosis patients and their respective relatives. Relatives were reassessed regarding EE dimensions at a 6-month follow-up. Relatives' psychological distress and illness attributions predicted criticism and EOI over-and-above patients' illness characteristics at both time points. Relatives' increased levels of anxiety, attributions of blame toward the patients, an emotional negative representation about the disorder, and decreased levels of self-blame attributions predicted EE-criticism at baseline. Relatives' anxiety and negative emotional representation of the disorder were the only significant predictors of EE-criticism at follow-up, whereas anxiety, attributions of control by the relative and an emotional negative representation about the disorder predicted EE-EOI both at baseline and follow-up assessments. Understanding the components that comprise and maintain EE attitudes should guide early psychosis caregivers in family interventions, enhancing proper management of psychological distress and reduction of negative appraisals about the illness. The prevention of high-EE attitudes over time in a sensitive period such as early psychosis might be critical in shaping the health of caregivers and the outcome of the affected relatives.
This pilot study evaluated a video-based educational program for improving communication skills and reducing family violence between parents and their adult children with schizophrenia. We used a one group pretest-posttest design. The program included a main 90-min video and six stories, each 20–30 min long. We made assessments at baseline and program completion (three months after baseline). Sixty-six parent participants completed the intervention. The average frequency of acts of family violence significantly decreased from 11.4 (SD = 26.2) at pretest to 5.1 (SD = 13.2) at posttest (p = 0.016). Our findings showed significant improvements regarding expressed emotion, psychological distress, family empowerment, and hope, demonstrating preliminary positive results for this video-based educational program. The program was shown to be feasible for support/educational groups of family members of adults with mental disorders to deliver and may also be useful for practitioner-led educational groups for families in public health centers or medical settings to offer.
Background: Integration of mental health services into primary health care systems has been advocated as a strategy to minimize the tremendous mental health treatment gap, particularly in low- and middle-income countries. Barriers to integration of mental health into primary health care have been widely documented; however, very little is known about the perception of service users and their caregivers on primary care-based mental health services. This study assessed service users' and caregivers' perceptions of mental health services provided by trained primary health care workers in Nepal. Methods: A qualitative study was conducted among people with depression, psychosis, alcohol use disorder and epilepsy, and their caregivers in Chitwan, a district in southern Nepal. Semi-structured interviews were conducted with 43 service users and 38 caregivers to assess their perceptions about the accessibility of the services, types of services they received, skills and competencies of health care providers, satisfaction and barriers to receiving services. Results: Overall, both service users and caregivers were satisfied with the mental health services provided by primary health care providers. They also perceived health workers to be competent and skillful because the services they received were effective in reducing their mental health problems. Both psychological and pharmacological services were made available free of cost, however, they considered psychological services more effective than pharmacological treatment. Major challenges and difficulties accessing services were associated with frequent transfer of trained health workers, non-availability of the same health care provider at follow-ups, frequent stock-out of medicines or non-availability of required medicines, lack of a confidential space for consultation in health facilities, and stigmatizing and negative behavior of some health workers. Conclusion: The results demonstrated that both service users and caregivers perceived primary care-based mental health services to be accessible, acceptable and effective. The key recommendations emerging from this study for improving mental health services in primary care include the provision of a separate cadre of psychosocial workers to provide psychological interventions, developing quick and efficient mechanisms for the procurement and supply of psychotropic medicines, establishing a confidential place within health facilities for consultation, and further training of health workers to reduce stigma.
Training-based intervention such as psychoeducational groups has become increasingly popular to empower family caregivers of people with schizophrenia, yet existing supportive programs for caregivers tend to focus more on the needs of the patients rather than the development of the caregivers. This study aimed to compare the outcomes of a skill-based empowerment psychoeducational group and an inner-resource enhancing empowerment narrative therapy group for family caregivers of people with schizophrenia. We conducted a randomized controlled trial with a longitudinal design. The sample consisted of 132 family caregivers who were randomly assigned to eight sessions of the two groups (i.e. a narrative-based group, or a psychoeducational group), or a control group with delayed treatment. Psychometric scales were administrated throughout the project. Both the psychoeducational group and the narrative group showed significant improvements in family relationships, caregiving burden, and coping skills compared with the control group across the three time points (pretest, posttest, and 2-month follow-up). A statistically significant advancement in coping skills was found in the psychoeducational group. The narrative group outperformed the psychoeducational group and the control group in the enhancement of inner resources, perceived control, and level of hope. The findings call for the need of an integrative empowerment approach that both values the inner strength and unique experiences of the caregivers and at the same time provides them with necessary skills and knowledge in taking care of their family members with schizophrenia.
The aim was to explore informal carers' perceptions of supporting the everyday life of a relative who has a psychiatric disability and resides in supported housing (SH). A qualitative study based on interviews with 12 informal carers was performed, and the data was analyzed with qualitative content analysis. The theme "Navigating in a misty landscape when striving to support a relative with a psychiatric disability" was identified, encompassing four categories pertaining to residents' needs, collaboration, environmental issues and the carer's situation. SH services can be enhanced by addressing informal carers' experiences and developing greater collaboration involving informal carers, residents and staff.
Background: The CAregiver Perceptions About CommunIcaTion with Clinical Team members (CAPACITY) instrument measures how care partners perceive themselves to be supported by the patient's health care team and their experiences communicating with the team. Objectives: The objective of this study was to assess the measurement properties (ie, structural validity of the construct and internal consistency) of the CAPACITY instrument in care partners of patients with cognitive impairment, and to examine whether care partner health literacy and patient cognitive impairment are associated with a higher or lower CAPACITY score. Research Design: This was a retrospective cohort study. Subjects: A total of 1746 dyads of community-dwelling care partners and older adults in the United States with cognitive impairment who obtained an amyloid positron emission tomography scan. Measures: The CAPACITY instrument comprises 12 items that can be combined as a total score or examined as subdomain scores about communication with the team and care partner capacity-assessment by the team. The 2 covariates of primary interest in the regression model are health literacy and level of cognitive impairment of the patient (Modified Telephone Interview Cognitive Status). Results: Confirmatory factor analysis showed the CAPACITY items fit the expected 2-factor structure (communication and capacity). Higher cognitive functioning of patients and higher health literacy among care partners was associated with lower communication domain scores, lower capacity domain scores, and lower overall CAPACITY scores. Conclusions: The strong psychometric validity of the CAPACITY measure indicates it could have utility in other family caregivers or care partner studies assessing the quality of interactions with clinical teams. Knowing that CAPACITY differs by care partner health literacy and patient impairment level may help health care teams employ tailored strategies to achieve high-quality care partner interactions.
Background: Family caregivers contribute to engagement in treatment and adherence, reduced substance misuse and relapse, and increased well-being of recipients with substance use disorder. However, providing care has also been associated with negative emotional and physical health outcomes for caregivers. The purpose of this integrative review was to determine what instruments are used to measure caregiver burden in informal caregivers of individuals with substance use disorder. Methods: An integrative review framework was applied to examine empirical and theoretical literature to answer the guiding research question, "How is caregiver burden measured in caregivers of individuals with substance use disorder?" PubMed, CINAHL, and APA PsychINFO were searched using a combination of search terms. The initial 1,198 articles were narrowed to 32 that fit the search criteria and purpose of the review. Results: A variety of scales have been used to measure caregiver burden. Caregiver burden is operationalized as objective or subjective burden. Objective burden refers to changes in the home, finances, employment, social life, and leisure, whereas subjective burden refers to the emotional reaction of the caregiver in coping with providing care. Caregiver burden was most often reported as moderate to severe in populations with substance use disorder. Attributes measured included anxiety, depression, stress, worry, displeasure, care recipient behavioral problems and substance abuse, stigma, relationship strain, financial expenses, social support, family disruption, and the effect on caregiver physical and emotional health. Conclusions: Specific instruments that can accurately evaluate objective and subjective caregiver burden are needed to measure the quality of caregiver health. More research is necessary to better understand the physical and emotional health of caregivers of persons with substance use disorder and the factors that contribute to increased quality of life. Understanding the relationship between outcomes and protective factors could help nurses to develop prevention strategies and treatment interventions aimed at decreasing the psychosocial trauma and stress associated with caregiver burden.
Background: Mental health recovery narratives have been defined as first-person lived experience accounts of recovery from mental health problems which refer to events or actions over a period of time and which include elements of adversity or struggle, and also self-defined strengths, successes or survival. They are readily available in invariant recorded form, including text, audio or video. Previous studies have provided evidence that receiving recorded recovery narratives can provide benefits to recipients. This protocol describes three pragmatic trials that will be conducted by the Narrative Experiences Online (NEON) study using the NEON Intervention, a web application that delivers recorded recovery narratives to its users. The aim of the NEON Trial is to understand whether receiving online recorded recovery narratives through the NEON Intervention benefits people with experience of psychosis. The aim of the NEON-O and NEON-C trials is to evaluate the feasibility of conducting a definitive trial on the use of the NEON Intervention with people experiencing non-psychosis mental health problems and those who care for others experiencing mental health problems respectively. Methods: The NEON Trial will recruit 683 participants with experience of psychosis. The NEON-O Trial will recruit at least 100 participants with experience of non-psychosis mental health problems. The NEON-C Trial will recruit at least 100 participants with experience of caring for others who have experienced mental health problems. In all three trials, participants will be randomly allocated into one of two arms. Intervention arm participants will receive treatment as usual plus immediate access to the NEON Intervention for 1 year. Control arm participants will receive treatment as usual plus access to the NEON Intervention after 1 year. All participants will complete demographics and outcome measures at baseline, 1 week, 12 weeks and 52 weeks. For the NEON Trial, the primary outcome measure is the Manchester Short Assessment of Quality of Life at 52 weeks, and secondary outcome measures are the CORE-10, Herth Hope Index, Mental Health Confidence Scale and Meaning in Life Questionnaire. A cost-effectiveness analysis will be conducted using data collected through the EQ-5D-5 L and the Client Service Receipt Inventory. Discussion: NEON Trial analyses will establish both effectiveness and cost-effectiveness of the NEON Intervention for people with experience of psychosis, and hence inform future clinical recommendations for this population. Trial Registration: All trials were prospectively registered with ISRCTN. NEON Trial: ISRCTN11152837 . Registered on 13 August 2018. NEON-C Trial: ISRCTN76355273 . Registered on 9 January 2020. NEON-O Trial: ISRCTN63197153 . Registered on 9 January 2020.
Background: Many clinical trials have assessed treatments for depressive disorders and bipolar depression. However, whether, and which, assessed outcome domains really matter to patients, informal caregivers, and health-care professionals remains unclear.; Methods: We did an international online survey in French, German, and English. Participants were adult patients with a history of depression, informal caregivers, and health-care professionals, recruited by purposeful sampling. To identify outcome domains, participants answered four open-ended questions about their expectations for depression treatment. We disseminated the survey without restriction via social media, patient and professional associations, and a media campaign. Four researchers independently did qualitative content analyses. We assessed data saturation using mathematical models to ensure the comprehensive identification of outcome domains.; Findings: Between April 5, 2018, and Dec 10, 2018, 1912 patients, 464 informal caregivers, and 627 health-care professionals from 52 countries provided 8183 open-ended answers. We identified 80 outcome domains related to symptoms (64 domains), such as mental pain (or psychological or psychic pain, 523 [17%] of 3003 participants) and motivation (384 [13%]), and functioning (16 domains), such as social isolation (541 [18%]). We identified 57 other outcome domains regarding safety of treatment, health care organisation, and social representation, such as stigmatisation (408 [14%]).; Interpretation: This study provides a list of outcome domains important to patients, informal caregivers, and health-care professionals. Unfortunately, many of these domains are rarely measured in clinical trials. Results from this study should set the foundation for a core outcome set for depression.; Funding: Fondation pour la Recherche Medicale and NIHR Oxford Health Biomedical Research Centre.
Objective: Psychological interventions reduce the impact of psychosis, but widescale implementation is problematic. We tested the feasibility of group acceptance and commitment therapy for Psychosis (G‐ACTp), delivered by frontline staff, and co‐facilitated by service‐user experts‐by‐experience (SU‐EbyE), for service‐users and informal caregivers (ISRCTN: 68540929). We estimated recruitment/retention rates and outcome variability for future evaluation. Methods: Staff and SU‐EbyE facilitators completed 1‐day workshops, then delivered closely supervised G‐ACTp, comprising four sessions (weeks 1–4) and two boosters (10 and 12 weeks). Participants recruited from adult community psychosis services were randomized to receive G‐ACTp immediately or after 12 weeks, completing outcome assessments at 0, 4, and 12 weeks. Service‐use/month was calculated for 1‐year pre‐randomization, weeks 0–12, and 5‐year uncontrolled follow‐up. Results: Of 41 facilitators trained (29 staff, 12 SU‐EbyE), 29 (71%; 17 staff, 12 SU‐EbyE) delivered 18 G‐ACTp courses. Participant refusal rates were low (9% of service‐users [10/112]; 5% of caregivers [4/79]); 60% of those invited to participate attended ≥1 G‐ACTp session (64% of service‐users [39/61]; 56% of caregivers [35/63]). Randomization of facilitators and participants proved problematic and participant follow‐up was incomplete (78% [66/85]; 82% of service‐users [36/44]; 73% of caregivers [30/41]). Effect sizes ranged from very small to large mostly favouring treatment. Service‐use reductions require cautious interpretation, as very few participants incurred costs. Conclusions: Implementation appears feasible for service‐users; for caregivers, retention needs improving. Outcome variability indicated n = 100–300/arm followed up (α = 0.05, 90% power). Methodological limitations' mean replication is needed: identified sources of potential bias may be reduced in a cluster randomized design with sessional outcome completion. Practitioner points: Group acceptance and commitment therapy can be successfully adapted for people with psychosis and their caregivers.Implementation (training and delivery) is possible in routine community mental health care settings.Clinical and economic outcomes are promising, but replication is needed.Recommendations are made for future studies.
This qualitative study was carried out to determine the burden of care on Turkish caregivers of patients with substance use disorder. The sample included relatives of 42 patients hospitalized in the Akdeniz University Alcohol and Drug Addiction Research and Application Center. Individual in-depth, open semi-structured interviews were used for data collection. Moreover, demographic questions and an interview guide with questions were also used. According to the results of this study, the following themes were evaluated: difficulties experienced, coping, and needs. The findings showed that substance abuse has adverse consequences and negatively affects both the patients and their relatives in terms of economic, psychological, and social aspects. Furthermore, because of the social stigma of substance abuse, the families receive very limited social support from the environment. This weakens the well-being of the family members and increases intrafamily conflicts. We conclude that ensuring the well-being of the caregivers of patients with substance use disorder is useful in maintaining a successful treatment of addiction. Thus, policymakers should include the relatives of patients with substance use disorder in prevention and intervention programs to increase the effectiveness of the interventions.
Objectives: This study systematically reviewed existing qualitative evidence of family members' experiences prior to the initiation of mental health services for a loved one experiencing their first episode of psychosis (FEP). Methods: A meta-synthesis review of published peer-reviewed qualitative studies conducted between 2010 and 2019 were included. Keyword searches were performed in four electronic databases and the reference lists of primary manuscripts. Two independent reviewers used the Critical Appraisal Skills Programme (CASP) qualitative checklist to assess methodological quality of each study. Results: A total of 365 articles were initially identified and 9 were articles identified in a secondary review and literature search. A total of 21 met inclusion criteria. Of those included in this review 169, mothers were the primary family to recall experiences. The meta-synthesis identified four major themes related to family member experiences prior to the initiation of mental health services for FEP: the misinterpretation of signs, the emotional impact of FEP on family members, the effect of stigma on family members, and engaging with resources prior to mental health services for FEP. Conclusions: Additional research is needed to develop healthy communication strategies that effectively deliver educational information about psychosis. This meta-synthesis also identified the need to understand help-seeking behaviors among families of those with FEP in effort to reduce the duration of untreated psychosis and improve pathways to care often initiated by a family member.
The present study investigated how stressors experienced by caregivers of people with personality disorders relate to each other and psychological distress, using the Stress Process Model (Pearlin et al. in Gerontologist 30(5):583–594, https://doi.org/10.1093/geront/30.5.583, 1990). A community sample of caregivers (N = 106) completed an online survey. Partial Least Squares Path Modelling revealed that caregivers who were male, younger, or residing with their loved one were more likely to experience stressors. Salient primary stressors included the caregivers' worry and care-receivers' levels of instrumental demands and interpersonal problems. Important secondary stressors included strains in the caregivers' schedules, family relationships, and health, as well as reduced mastery and caregiving esteem. The model provided preliminary support for a pathway from demographic and relationship characteristics, through primary and secondary stressors, to heightened psychological distress. The present study clarifies the way caregiving stressors give rise to psychological distress; directions for future research are discussed.
Clinicians have long identified the psychological impacts and objective burdens on family members and caregivers who support loved ones with psychiatric conditions. However, there is a lack of programming available to support families with relatives who have been diagnosed with a personality disorder, and research in this area is scant. The current pilot study evaluated the impact of providing a peer-led education group for loved ones of individuals diagnosed with borderline personality disorder (BPD). A mixed-methods study design was implemented: quantitative self-report scales were used to derive scores of mastery and burden and focus groups gathered qualitative narratives. Data were collected from participants (N = 15) before and after the group intervention, as well as 4 months later. Quantitative results indicated that while participants initially reported a sense of burden in their caregiving role, their self-report of this phenomenon reduced over time following engagement with the group. The focus groups revealed that participants found the group had a positive impact on their well-being as a result of the information, skills acquisition, and support/validation they received. They also noted clinical improvements for their relatives with BPD. This study provides preliminary evidence for the effectiveness of the peer-led education group in supporting families. The results suggest that particular variables such as peer leadership, skills-based learning, and focus on caregiver wellness—rather than on the person with a diagnosis – may explain improved outcomes of this family intervention.
Purpose France, once a pioneer in psychiatry, is now sinking as its population faces major mental health challenges. This includes the 12 Million French individuals with psychiatric conditions, the lack of appropriate structures and the shortage of skilled mental health professionals, but it also leaves families in critical situations. The purpose of this study is to explore the carers’ caregiving experiences and to suggest ways to organise educational programmes to support mental health carers in France. Design/methodology/approach The research was conducted from January 2018 to November 2019. It included French carers of patients with mental conditions. Recorded semi-structured interviews were used and findings were analysed through an inductive thematic analysis and regrouped into key themes. Findings Participants had overwhelming negative representations of “mental illness”. The fact that they were excluded from participating in the patient’s health management further added to their misconceptions around mental disability, it limited their communication with their family and amplified their burdens. Research limitations/implications There is an urgent need for carer empowerment; carers should be included in educational programmes, they should benefit from French Government subsidies and social-network assistance and receive quality assistance by trained mental health professionals. The critical situation of carers can only be addressed by combining these three steps and through the action of appropriate actors in the field of mental health, thus alleviating the current paradigm of psychiatric care in France. Originality/value Thousands of research papers regarding carers have been published in other countries. In addition yet, to the knowledge, only a few investigations on French mental health carers have been conducted to this day. The singularity of this research lies in the rare individual interviews, which provided us with first-hand testimonies of mental health carers in France. This data could be of vital aid for professionals and for policymakers when advocating for better support of carers in mental health.
Family caregivers of people with mental disorders face a number of burdens and stressors, such as associative stigma and burnout. These burdens are often a result of their caring role coupled with insufficient support or ineffective coping strategies, which can affect their quality of life and biopsychosocial integrity that, in turn, may affect the care they provide. This study aimed to explore the experiences of family caregivers of people with mental disorders, through examining the burdens that they face and the coping strategies that they use. Using a descriptive qualitative approach, 13 semi-structured interviews were conducted with members of the Saudi public, recruited through popular social media platforms and analyzed using thematic analysis. Five main themes were constructed from the data: Type of care, Challenges, Coping and support, Perceptions of public awareness, and Messages to others. The findings emphasize the different types of burdens that caregivers experience, and their needs that require a range of responses such as educational training on effective coping strategies, and psychological support in the form of counseling or group therapy. This study highlights the voice of caregivers and their message to the public, in order to correct the misconceptions surrounding mental disorders and those associated with them.
People with intellectual and developmental disabilities (IDD) frequently have behavioral or mental health needs, but experience obstacles to treatment. Family caregivers are often responsible for coordinating the care of individuals with IDD. This study examined family caregiver experiences using intake data from a national tertiary crisis intervention model designed for people with IDD and mental health needs. Caregivers (n = 488) completed the Family Experiences Interview Schedule. Less than half of families reported satisfaction with the mental health services received. Notable gaps were in crisis, night and weekend services, choice of services and providers, communication and coordination between providers, and specialized training. Experiences were worse for caregiving fathers and individuals with IDD with co-occurring chronic medical conditions.
Introduction: Informal caregivers play a major role in the support and maintenance of community patients with severe psychiatric disorders. A pilot study showed that an individualised brief intervention such as the Ensemble programme leads to significant improvements in psychological health state and optimism.; Methods and Analysis: This randomised controlled trial aims to compare the efficacy of using Ensemble in improving informal caregivers' psychological health states and the ability to play an active role in their situations with that of support as usual. Improvements on the psychological health global index will be measured three times (T0-pre, T1-post and T3 2 months follow) with standardised questionnaires (the Global Severity Index of Brief Inventory Symptoms, the Life Orientation Test-Revised, the 36-item Medical Outcome Study Short-Form Health Survey and the French Zarit Burden Interview). Differences between groups in post-test and pretest values will be examined using an analysis of covariance for each outcome variable. The severity of illness measured by the Social and Occupational Functioning Assessment Scale will also be collected at T0 and T2 to compare eventual patient improvements. At the end of the programme, the experiences of the 20 patients participating in the Ensemble programme will be evaluated qualitatively.; Ethics and Dissemination: The research protocol received full authorisation from the Human Research Ethics Committee of the Vaud state, Switzerland. The principal paper will concern the results of the experimental design used to test the Ensemble programme. The research team will prioritise open access publications.; Trial Registration Number: NCT04020497.
Background: Strengthening the coping resources as an instruction for anxiety-regulation may affect the emotion-regulation of families. Regarding the significant role of families in health of these patients, it seems that interference in strengthening coping resources affects their emotion-regulation. Aim: This study aimed to determine the effect of strengthening family coping resources on the emotion-regulation of schizophrenic patients' caregivers. Method: This quasi-experimental research was conducted on families with hospitalized schizophrenic patients in one of the most prominent psychiatric centers in the Northeast of Iran in 2018. The participants were assigned to intervention (n=29) and control (n=31) groups. A short revised form of Emotion-Regulation Questionnaire was utilized as data collection tool. The intervention based on strengthening family coping resources (SFCR) was administered in three modules and 15 group sessions (groups of 6-8 individuals) according to the instructions of the multi-family model of Kisser et al. On the other hand, the controls received routine cares in hospital wards. The data were analyzed in SPSS software version (16) using independent and paired t-tests. Results: The groups were homogenous in terms of demographic characteristics. The result of independent t-test demonstrated a significant difference in the mean score of revaluation (P=0.001) and suppression (p=0.001) in the intervention group, compared to the control group, after the intervention. Implications for Practice: This intervention can guide clinicians on how to implement a familycentered care program to reduce the burden of caring schizophrenic patients through gaining family support in the efficient care of these patients.
Background and Aim: Incorrect beliefs and negative thinking of society and in the family affect psychiatric patients over the process of treatment, care and recovery. The aim of this study was to investigate the effect of group counseling on the attitude of family caregivers in patients with mental disorders. Materials and Methods: This quasi experimental study was conducted in psychiatric wards of Farshchian Hospital in Hamadan in Iran in 2018. 49 family caregivers were randomly selected to the study. Data were collected using a researcher-made mental attitude questionnaire. At first, family caregivers' attitudes were evaluated; then, they held 4 groups and for each group done 4 sessions of 60 minutes of group counseling. The questionnaire was completed again by the family caregivers immediately after the intervention. Data analysis was done using SPSS software version 16 using descriptive and inferential statistics. Results: The mean of the attitude of the family caregivers before the group counseling was (12.59 ± 13.49). The mean of the attitude score of family caregivers after group counseling was (24.45 ± 8.32). Paired t-test showed that the attitude score of caregivers increased significantly after group counseling (p <0.001). Discussion and Conclusion: The results of the study indicate that group counseling improves the attitude of family caregivers towards mental illness. Therefore, it is recommended that psychiatric nurses use this method to educate families of mental patients.
Schizophrenia is the most severe chronic disabling psychiatric disorder that needs long term care in various aspects. Therefore, the family's emotional atmosphere caused by the disease affects the condition of the patients' caregivers. This study aimed to investigate the effect of emotional regulation training on stress, anxiety, and depression in caregivers of patients with schizophrenia. The study was a randomized controlled trial. Seventy caregivers of patients with schizophrenia randomly assigned to a group that received emotion regulation training and a control group. The intervention group was trained about emotion regulation during eight 90-min sessions. The participants completed the Depression, Anxiety and Stress Scales-21 questionnaire before and one month after the intervention. The results showed that stress, anxiety and depression scores significantly reduced in the intervention group compared to the control group. Emotional regulation training with cognitive methods has significantly reduced the anxiety, stress, and depression of caregivers of patients with schizophrenia.
Objective: This study aims to develop and validate the stigma assessment tool for family member caregivers of patients with mental illness (SAT-FAM). Methods: This study was conducted in three phases: (1) explicate the concept of stigma towards family caregivers of patients with mental illness, (2) develop and iteratively optimise a preliminary version of the SAT-FAM, and (3) test the psychometric properties of the final version of the SAT-FAM. In phase 1, 14 family caregivers of patients with mental illness were interviewed for qualitative data collection and analysis. Four themes emerged: people's reaction and attitude, compassion with fear, rejection and loneliness, and confusion about mental illness. In phase 2, the first draft of the SAT-FAM with 38 items was developed. Based on the content validity index, each item was evaluated by 15 experts using a 4-point scale (1 = not relevant; 4 = very relevant). 15 family member caregivers of patients with mental illness were randomly selected to complete the face validity form on a Likert scale ranging from 1 (strongly disagree) to 4 (strongly agree). In phase 3, 286 family caregivers of people with mental illness were recruited for exploratory factor analysis. Internal consistency (Cronbach's coefficient) and test-retest reliability were measured. Results: The final draft of the SAT-FAM comprised 30 items in four factors: shame and discrimination, social interaction, emotional reaction, and avoidance behaviours. The internal consistency (Cronbach's alpha) was >0.89 for all factors. The test-retest reliability among 30 family caregivers was good (0.76). Conclusions: The SAT-FAM is a valid and reliable self-report instrument for assessing stigma towards family caregivers of patients with mental illness. It enables a practical way of evaluating interventions aimed at reducing stigma.
To investigate the cross-sectional associations between depression in people with dementia and both caregiver burden and quality of life in 8 European countries, and to test these associations compared with the presence of other neuropsychiatric symptoms. Cross-sectional study. In total, 1223 dyads comprised of informal caregivers and people with dementia living in a community-dwelling setting, recruited from the Right Time Place Care study, a cohort survey from 8 European countries. To test the associations between depression (according to the Cornell Scale for Depression in Dementia) and informal caregiver burden (defined by the Zarit scale and hours of supervision in terms of Resource Utilization in Dementia), distress (defined by the Neuropsychiatric Inventory Questionnaire distress score), and quality of life (according to the visual analogue scale and 12-item General Health Questionnaire). Linear regressions showed an association between depression and main outcomes (Zarit scale: β 3.7; P =.001; hours of supervision: β 1.7; P =.004; Neuropsychiatric Inventory Questionnaire distress score: β 1.2; P =.002). A similar association was found concerning psychological and overall well-being (12-item General Health Questionnaire: β 1.8; P <.001; Euroqol Visual Analogue Scale: β −4.1; P =.003). Both associations remained significant despite the presence of other NPS and after adjusting for confounders. Further studies are needed to assess whether providing tailored strategies for optimizing diagnosis and managing of depression in people with dementia might improve caregiver quality of life and reduce their burden in the community-dwelling setting.
Memory-related diseases often have a profound effect not only on the lives of individual people, but also on the lives of their families and others close to them. In this article, we introduce one national solution developed to help people who encounter such a situation. Regional ‘Muistiluotsi’ (memory pilot) centres provide expert assistance and support to people with memory-related diseases and their families. With its population of 5.5 million people, Finland has an estimated 193,000 people with a memory-related disease. Annually, approximately 14,500 people receive the diagnosis....
The aim of this systematic integrative review is to analyse the challenges and barriers found in mental healthcare systems and the impact they have on the family. Searches were made of the Web of Science, Scopus, Medline and Cochrane databases using terms relating to mental health, family care and healthcare systems. We included and critically evaluated studies published in English between 2015 and 2019 that directly or indirectly analysed public mental health policies and the consequences they have for the family. We analysed our findings following the inductive content analysis approach. A total of 32 articles that met quality indicators were identified. Very closely related structural, cultural, economic and healthcare barriers were found that contribute to the treatment gap in mental health. The family covers the care systems’ deficiencies and weaknesses, and this leads to overload and a diminishing quality of life for caregivers. It is acknowledged that people with mental illness and their families should be able to participate in the development of policies and thus contribute to strengthening mental healthcare systems worldwide.
Aim: The first episode of psychosis is a challenging time for both patients and those who care for them. Although literature on treatment is plentiful, literature on how to best support caregivers is more scarce. This review was undertaken to better understand the caregiver experience, determine which interventions most effectively alleviate their burden and examine which other factors may affect outcomes. Methods: Articles were retrieved from PubMed and OVID using the following search terms: first episode psychosis (FEP), schizophrenia, caregiver, intervention and burden in various combinations. Only peer‐reviewed articles germane to FEP caregiver experience and interventions written in English were included. Results: Caregivers can experience grief, guilt and anxiety during this time. While concerned for their loved one, their own lives take a back seat and their mental and physical health are adversely affected. Some are better prepared to cope and are typically warm, decisive, confident and optimistic. Their families are organized and flexible. Others are less prepared and are more likely to have poor self‐esteem, use avoidant coping strategies and be overly critical. Their families are controlling and have difficulty with communication and balance. These caregivers stand to benefit most from interventions. Conclusions: Effective interventions incorporate psychoeducation, problem solving strategies, peer support and clinician guidance. A higher level of interaction with facilitators and peers is associated with better results. Benefits include decreases in caregiver burden, depressive and anxious symptoms and feelings of shame and isolation. Although the literature has yet to isolate the key factors of a successful intervention, this review provides practical suggestions for clinicians and further illustrates the need for more research.
The aim of this study was to examine carer experiences with mental health services for individuals with dual disabilities in Australia. This qualitative study involved semi-structured interviews with nine parents with an adult offspring with an intellectual disability in 2016. Parents who had received a mental health service for their offspring within the past two years in Australia with adequate spoken English were included. Parents were asked four open ended questions relating to their experiences of mental health services for their offspring. Findings revealed parents reported more negative experiences with mental health services perceived to hold limited expertise in dual disabilities. They also reported difficulties in accessing appropriate services and highlighted the importance of collaboration and adjustments to suit individual needs of their child. The findings are discussed in terms of the implications for service provision and training for practitioners working with families with intellectual disabilities. Acknowledging the important role of carers as key informants and partners in treatment decision making is highlighted as necessary aligning services with best practice standards.
Family caregivers (FCs) of persons with mental illness (PMI) often experience caregiving burdens that contribute to poor mental health. As compared to European-American FCs, Asian-American FCs may experience greater caregiving burden due to an increased likelihood of cohabiting with PMIs. Yet, limited research exists on the caregiving experience of Asian-American FCs and on how self-care practice and social support mediate caregiver burden among FCs of PMIs. Using a cross-sectional mixed-method design this study explored the impact of caregiving burden on mental health outcomes among Chinese-American and European-American FCs. The quantitative data showed similar caregiving burden between the two groups and a partial mediation role for self-care practice on FCs' mental health. The qualitative data showed that FCs from the two groups utilized different types of social support. Findings suggest the need for mental health professionals to develop intervention programs to enhance self-care practices and social support for FCs when working with PMIs.
There are very little data on the burden among caregivers of older adults with severe mental diseases. We aimed to assess the perceived burden among caregivers of family members with schizophrenia spectrum and bipolar disorders. A cross-sectional study was carried out with 52 older patients with schizophrenia spectrum and bipolar disorders and their family caregivers. Caregivers were assessed with the medical outcome survey short form (SF-36), the Zarit Burden Interview (ZBI) and the Depression Anxiety and Stress scales (DASS-21). Caregivers' mental quality of life was impaired with an average mental score of 59.05. For a threshold value of 17, the level of perceived burden was considered as high for 42.3% of caregivers. After controlling for demographic variables (age and gender) and patients' health-related variables (level of dependency, comorbidities, age onset of illness, number of hospitalizations and duration of clinical remission), caregivers' levels of depression, stress, and SF-36 physical component significantly contributed to their perceived burden. Certain modifiable risk factors play an inescapable role in increasing the level of burden among caregivers of older patients with serious mental illnesses. Improving the quality of life and psychological well-being of family caregivers should be considered an integral part of treatment for serious mental illness in older adult patients.
Background: Most schizophrenia patients are supported by main informal caregivers at home in China. This study aims to investigate the further needs of social supports for main informal caregivers of schizophrenia patients and to analyze influencing factors on the awareness and utilization of social supports in Beijing. The results of this study could potentially act as reference for health professionals to implement appropriate and effective support programs. Methods: A mixed-methods approach was used in this study. Awareness, utilization and influencing factors of social supports for main informal caregivers were investigated using questionnaires in 6 urban districts in Beijing. Meanwhile, individual in-depth interviews with 10 main informal caregivers from the urban districts of Beijing were conducted to identify the caregivers' perspective on social supports and their further needs. Results: Quantitative results showed that although the government provided multi-channel resources for schizophrenia patients and their families, awareness and utilization of the resources such as rehabilitation and relevant subsidies were less than 10.0 and 5.0% respectively. Most caregivers in in-depth interviews expressed that they had negative experiences with respect to obtaining social supports, and they emphasized that more support would be needed in terms of financial support, respect, and rehabilitation institutions. Conclusions: The awareness and utilization of social supports are low for main informal caregivers of schizophrenia patients. More services and improved public attitudes are needed for schizophrenia patients and their caregivers.
Background: Schizophrenia is a persistent and debilitating mental illness, and its prognosis depends largely on supportive care and systematic treatment. In developing countries like China, families constitute the major caregiving force for schizophrenia and are faced with many challenges, such as lack of knowledge, skills, and resources. The approach to support family caregiving in an accessible, affordable, feasible, and cost-effective way remains unclear. The wide-spread use of WeChat provides a promising and cost-effective medium for support.; Objective: We aim to present a protocol for assessing a WeChat-based integrative family intervention (WIFI) to support family caregiving for schizophrenia.; Methods: We will develop a WIFI program that includes the following three core components: (1) psychoeducation (WeChat official account), (2) peer support (WeChat chat group), and (3) professional support (WeChat video chat). A rigorous stepped-wedge cluster randomized trial will be used to evaluate the implementation, effectiveness, and cost of the WIFI program. The WIFI program will be implemented in 12 communities affiliated with Changsha Psychiatric Hospital through the free medicine delivery process in the 686 Program. The 12 communities will be randomized to one of four fixed sequences every 2 months during an 8-month intervention period in four clusters of three communities each. Outcomes will be assessed for both family caregivers and people with schizophrenia. Family caregivers will be assessed for their knowledge and skills about caregiving, social support, coping, perceived stigma, caregiver burden, family functioning, positive feelings, and psychological distress. People with schizophrenia will be assessed for their symptoms, functioning, quality of life, recovery, and rehospitalization. Cost data, such as intervention costs, health care utilization costs, and costs associated with lost productivity, will be collected. Moreover, we will collect process data, including fidelity and quality of program implementation, as well as user attitude data. Treatment effects will be estimated using generalized linear maximum likelihood mixed modeling with clusters as a random effect and time as a fixed effect. Cost-effectiveness analysis will be performed from the societal perspective using incremental cost-effectiveness ratios. Qualitative analysis will use the grounded theory approach and immersion-crystallization process.; Results: The study was funded in August 2018 and approved by the institutional review board on January 15, 2019. Preliminary baseline data collection was conducted in May 2019 and completed in September 2019. The WIFI program is expected to start in September 2020.; Conclusions: This is the first study to assess a WeChat-based mHealth intervention to support family caregiving for schizophrenia in China. The innovative study will contribute to the development of a more cost-effective and evidence-based family management model in the community for people with schizophrenia, and the approach could potentially be integrated into national policy and adapted for use in other populations.; Trial Registration: ClinicalTrials.gov NCT04393896; https://clinicaltrials.gov/ct2/show/NCT04393896.; International Registered Report Identifier (irrid): PRR1-10.2196/18538. (©Yu Yu, Tongxin Li, Shijun Xi, Yilu Li, Xi Xiao, Min Yang, Xiaoping Ge, Shuiyuan Xiao, Jacob Tebes. Originally published in JMIR Research Protocols (http://www.researchprotocols.org), 25.08.2020.)
Purpose This study aimed to examine correlates of caregiver burden and health-related quality of life (HRQoL) among primary family caregivers of individuals with schizophrenia in inpatient psychiatric rehabilitation facilities. Methods A cross-sectional study was conducted with 157 Taiwanese primary family caregivers of individuals with schizophrenia residing in inpatient psychiatric facilities. Measures included socio-demographic questionnaires and clinical information, Mutuality Scale, Family Crisis-Oriented Personal Evaluation Scales, Zarit Burden Interview, and World Health Organization Quality of Life-brief version. To describe the degree of caregiver burden and domains of HRQoL, descriptive statistics were computed. Independent sample t test, one-way analysis of variance, and Pearson's correlation analysis followed by multiple regression analyses were performed to determine correlations and relationships between characteristics of patients and primary family caregivers with caregiver burden and domains of HRQoL. Results Primary family caregivers experienced mild to moderate caregiver burden and poor HRQoL. Primary family caregivers who were older and unemployed, caring for patient's severe psychiatric symptoms, and had low monthly incomes, decreased mutuality, and fewer family coping strategies were associated with greater caregiver burden and poor HRQoL. Greater mutuality and family coping strategies of reframing and seeking spiritual support were the most significant factors in improving caregiver burden and all domains of HRQoL, respectively. Conclusion Family-focused interventions for caregivers of institutionalized persons with schizophrenia that include psychological support and peer support groups are recommended to enhance mutuality and family coping strategies, reduce caregiver burden, and improve HRQoL.
Purpose: The Family Burden Interview Schedule (FBIS-24) and the Zarit Caregiver Burden Interview (ZBI-22) are among the most widely used measures for assessing caregiving burden, but their psychometric performances have not been compared in the same study of caregivers of people living with schizophrenia (PLS). This is important because the measures assess overlapping constructs-the FBIS-24 assesses objective burden (e.g., completion of manual tasks) and the ZBI-22 assesses subjective burden (e.g., perceived distress, stigma). This study seeks to fill this gap by comparing the reliability and validity of the FBIS-24 and the ZBI-22 in a Chinese community sample of caregivers of PLS. Methods: A Cross-sectional stud was conducted in a community-based mental health service program in Central South part of China. A total of 327 primary family caregivers of PLS completed face-to-face interviews of the FBIS-24, the ZBI-22, the Patient Health Questionnaire (PHQ-9), the Generalized Anxiety Disorder Scale (GAD-7), and the Family Adaptation, Partnership, Growth, Affection and Resolve Index scale (APGAR), and PLS were assessed using the Global Assessment of Function scale (GAF). Results: Our findings show that both the FBIS-24 and ZBI-22 have comparable psychometric performance in terms of the internal consistency, convergent validity and known group's validity. Conclusion: Both the FBIS-24 and the ZBI-22 are psychometrically sound measures of caregiving burden but the choice of which measure to use will depend on the research question.
Background Conflicting evidence exists on whether parent or spouse caregivers experience better outcomes when caring for family members with schizophrenia. The current study aims to examine relative caregiving experiences and impacts of spouse and parent caregivers for people living with schizophrenia (PLS) in China. Methods A cross-sectional study was conducted in a sample of 264 community-dwelling primary family caregivers of PLS. Face-to-face interviews were conducted to collect information on family caregiving activities; negative caregiving impacts including objective and subjective burden, and caregiver psychological distress such as depression and anxiety; positive caregiving impacts including caregiving rewarding feelings, and family functioning for spouse and parent caregivers. Results Both types of caregivers report engaging in similar caregiving activities and report comparable levels of objective burden. However, parent caregivers report significantly higher subjective burden than spouse caregivers (b=7.94, 95%CI:2.08, 13.80, P<0.01), which is also reflected in significantly higher depression (b=3.88, 95%CI:1.35, 6.41, P<0.01) and anxiety (b=2.53, 95%CI: 0.22, 4.84, P<0.05), and lower family functioning (b=-1.71, 95%CI: -2.73, -0.49, P<0.01). Despite these differences, both groups of caregivers report comparable rewarding feelings about caregiving. Conclusions Our findings have implications for family caregivers globally, but especially for countries that adhere to Confucian cultural values and provide guidance for future family intervention programs. Such programs may do well to incorporate cultural values and beliefs in understanding caregiving and kinship family dynamics so as to support family caregivers, and in particular, the specific vulnerabilities of parent caregivers.
Cognitive impairment (CI) is one of symptoms that adults with cancer frequently report. Although there are known factors that contribute to a patient's CI, these factors did not sufficiently explain its variability. Several studies conducted in patients with neurocognitive disorders have reported relationships between patients' cognitive function and caregiver characteristics, which are poorly understood in the context of cancer. This scoping review aims to map the literature on caregiver characteristics associated with CI in adults with cancer. We used the framework proposed by Arksey and O'Malley and PRISMA-Sc. Studies published in English by 2019 were searched through seven electronic databases. All retrieved citations were independently screened and eligibility for inclusion was determined by two independent authors. Ten studies met inclusion for this review with all of them showing significant associations between a patient's cognitive function and caregiver characteristics. Caregiver's mental health was the most commonly associated with a patient's cognitive function followed by family functioning, adaptation to illness, attitude toward disclosure of the illness, burden, coping and resilience, and demographic characteristics. These review findings suggest that enhanced information about CI in relation to caregiver characteristics will eventually provide the foundation for multifocal interventions for patients with impaired cognitive function. This scoping review identified caregiver characteristics that are associated with patients CI. These characteristics should be also assessed when health providers assess and treat CI of adults with cancer.
Background: The number of people with neurocognitive disorder is increasing, and the majority of them are cared for by informal caregivers in the community. Mental health problems are common among caregivers, however, professional support for them is often limited. Non-pharmacological self-help interventions, such as bibliotherapy, may improve mental well-being and has the potential for being integrated into clinical or social services. Objectives: To explore what types of bibliotherapy have been used for improving the mental well-being of informal caregivers of people with neurocognitive disorders, and the effect on mental well-being outcomes. Design: A systematic review and meta-analysis. Review methods: Six databases were searched for relevant articles on July 1, 2019. Clinical trial registries and the reference lists of included studies were also searched. Both randomized controlled trials and quasi-experimental studies were included. The Cochrane Collaboration risk of bias tool for randomized controlled trials was used to assess the quality of studies. Review Manager 5.3 was used to analyze data, standardized mean difference (SMD) and 95% confidence interval (CI) were used to estimate the pooled treatment effect. Random effects models were used for meta-analyses. Funnel plot was not performed due to the limited number of studies. This systematic review was registered at PROSPERO (CRD42019129152). Results: Nine randomized controlled trials with 1036 informal caregivers were included. Most of the included studies had some aspects of bias. Three types of bibliotherapy were used. Bibliotherapy had a significant pooled medium to large effect on reducing depression at Z = 1.99 (SMD = -0.74, 95%CI = -1.47 to -0.01, p = .05), however, the heterogeneity was high (I2 = 94%). For the subgroups, only the video-based bibliotherapy significantly reduced depression at Z = 2.78 (I2 = 83%, SMD = -2.11, 95%CI = -3.6 to -0.62, p = .005). Bibliotherapy had a significant small to medium effect on caregiver's self-efficacy for dealing with problem behaviours at Z = 2.44 (I2 = 0, SMD = 0.36, 95%CI = 0.05 to 0.67, p = .02), however, the effect on self-efficacy for obtaining respite was not significant (I2 = 0, SMD = 0.17, 95%CI = -0.16 to 0.49, p = .32). The effect on decreasing state anxiety was significant at Z = 2.30 (I2 = 22%, SMD = -0.22, 95% CI = -0.41 to -0.33, p = .02). Conclusions: Bibliotherapy showed positive effects on reducing depression, improving self-efficacy for dealing with problem behaviors and reducing anxiety among informal caregivers. The effects on reducing depression should be viewed with caution due to high heterogeneity. The effects on other mental well-being outcomes are inconclusive due to limited number of studies and this underscores the need for further research.
The increasing number of older adults with cognitive deficits, including dementia, poses a major challenge for public health in the United States. At the same time, the limited number of informal and professional caregivers available to support this rapidly growing population is of mounting concern. Not only does population aging limit the number of potential caregivers, but extant caregivers often lack skills to provide quality care. The integration of intelligent assistive technologies (IAT), including devices, robotics and sensors in many forms, into eldercare, may offer opportunities to reduce caregiver burden and enhance healthcare services while improving the quality of life among older adults with mild to severe cognitive deficits. However, many caregivers and their care recipients lack access to these technologies. The reasons for this reduced access are multifactorial, including the digital divide, sociocultural factors, and technological literacy. This mini review investigates the emerging use of IAT available to caregivers and older adults with cognitive deficits and explores the challenges in socioeconomic status and technological literacy as well as ethical and legal implications that should be considered in the design and development of IAT for older adults with cognitive deficits. Drawing from existing literature, it will suggest frameworks for design and adoption aimed at increased and equitable access for this vulnerable population.
It is clear from existent literature that families and carers of relatives and friends with borderline personality disorder (BPD) experience high levels of burden. Whilst family interventions are considered vital to improving the outcomes of those with a range of mental health difficulties, there has been limited development of direct interventions for carers of people with BPD, despite a high level of need. This systematic review aimed to appraise and synthesize the existing research evidence for interventions for carers of people with BPD. Ten studies were included that were directly related to six interventions for families and carers of people with personality disorder. The findings of these studies, whilst limited, do provide some initial evidence that interventions for carers may lead to significant outcomes for the participants, particularly in improving carer well-being and reducing carer burden.
Background Carers are key providers of care and support to mental health patients and mental health policies consistently mandate carer involvement. Understanding carers' experiences of and views about assessment for involuntary admission and subsequent detention is crucial to efforts to improve policy and practice. Aims We aimed to synthesise qualitative evidence of carers' experiences of the assessment and detention of their family and friends under mental health legislation. Method We searched five bibliographic databases, reference lists and citations. Studies were included if they collected data using qualitative methods and the patients were aged 18 or older; reported on carer experiences of assessment or detention under mental health legislation anywhere in the world; and were published in peer-reviewed journals. We used meta-synthesis. Results The review included 23 papers. Themes were consistent across time and setting and related to the emotional impact of detention; the availability of support for carers; the extent to which carers felt involved in decision-making; relationships with patients and staff during detention; and the quality of care provided to patients. Carers often described conflicting feelings of relief coupled with distress and anxiety about how the patient might cope and respond. Carers also spoke about the need for timely and accessible information, supportive and trusting relationships with mental health professionals, and of involvement as partners in care. Conclusions Research is needed to explore whether and how health service and other interventions can improve the involvement and support of carers prior to, during and after the detention of family members and friends.
Supported decision-making has become popular among policymakers and mental health advocates as a means of reducing coercion in mental healthcare. Nevertheless, users of psychiatric services often seem equivocal about the value of supported decision-making initiatives. In this paper we explore why such initiatives might be rejected or ignored by the would-be beneficiaries, and we reflect on broader implications for care and coercion. We take a critical medical humanities approach, particularly through the lens of entanglement. We analyse the narratives of 29 people diagnosed with mental illness, and 29 self-identified carers speaking of their experiences of an Australian mental healthcare system and of their views of supported decision-making. As a scaffolding for our critique we consider two supported decision-making instruments in the 2014 Victorian Mental Health Act: the advance statement and the nominated person. These instruments presuppose that patients and carers endorse a particular set of relationships between the agentic self and illness, as well as between patient, carer and the healthcare system. Our participant narratives instead conveyed 'entangled' relations, which we explore in three sections. In the first we show how ideas about fault and illness often coexisted, which corresponded with shifting views on the need for more versus less agency for patients. In the second section, we illustrate how family carers struggled to embody the supported decision-making ideal of the independent yet altruistic nominated person, and in the final section we suggest that both care and coercion were narrated as existing across informal/formal care divisions. We conclude by reflecting on how these dynamic relations complicate supported decision-making projects, and prompt a rethink of how care and coercion unfold in contemporary mental healthcare.
Background Psychosis often causes significant distress and impacts not only in the individuals, but also those close to them. Many relatives and friends ('carers') provide long-term support and need resources to assist them. We have co-produced a digital mental health intervention called COPe-support (Carers fOr People with Psychosis e-support) to provide carers with flexible access to high quality psychoeducation and interactive support from experts and peers. This study evaluates the effectiveness of COPe-support to promote mental wellbeing and caregiving experiences in carers. Methods This study is a single-blind, parallel arm, individually randomized controlled trial (RCT) comparing COPe-support, with attention control. Both groups continue to receive usual care. COPe-support provides interactive web-based psychoeducation on psychosis-related issues, wellbeing-promotion and network support through forums. The attention-control is a non-interactive online information resource pack. Carers living in England are eligible if they provide at least weekly support to a family member or close friend affected by psychosis, and use internet communication (including emails) daily. All trial procedures are run online, including collection of outcome measurements which participants will directly input into our secure platform. Following baseline assessment, a web-based randomization system will be used to allocate 360 carers to either arm. Participants have unlimited access to the allocated condition for 40 weeks. Data collection is at three time points (10, 20, and 40 weeks after randomization). Analyses will be conducted by trial statisticians blinded to allocation. The primary outcome is mental wellbeing measured by Warwick Edinburgh Mental Wellbeing Scale (WEMWBS), at 20 weeks. As well as an intention-to-treat analysis, a complier average causal effect (CACE) analysis will be conducted to estimate the intervention effect in participants who have accessed COPe-support content twice or more. The secondary objectives and analysis will examine other health and caregiving-related outcomes and explore mechanisms. In a process evaluation, we will interview 20% of the intervention arm participants regarding the acceptability of COPe-support. We will explore in detail participants' usage patterns. Discussion The results of this trial will provide valuable information about the effectiveness of COPe-support in promoting wellbeing and caregiving experiences in carers.
Purpose: This study was undertaken to develop a theoretical framework explaining family caregiving processes for older persons with cognitive impairment recovering from hip fracture surgery. Design and Methods: In this grounded theory study, data were collected in audio-recorded face-to-face interviews with 21 family caregivers. Among these caregivers, 14 cared for hip-fractured persons with cognitive impairment, and seven cared for those without cognitive impairment. Caregivers were interviewed five times after patients’ discharge: at 1 week and at 1, 3, 6, and 12 months. Data were analyzed by constant comparative analysis. Findings: The core category explaining the family caregiving process for hip-fractured persons with cognitive impairment was “resuming normal life during drip-like recovery.” This category captures the slowness of the recovery process, as slow as dripping water. During the early postoperative period, caregivers attempted to gain control of the postoperative situation, using various maintenance and improvement strategies to deal with the chaos in individuals and the family and to protect hip-fractured persons with cognitive impairment from further harm. The goal of recovery was to get back to their original life. Conclusions: Family caregivers of hip-fractured older persons with cognitive impairment needed to deal with more complex chaotic situations, exerted more efforts to administer safety measures, and required more time to achieve a stable life pattern. Clinical Relevance: Since postoperative recovery was perceived as extremely slow, family caregivers of hip-fractured older persons with cognitive impairment should be patient regarding recovery and be informed before hospital discharge of different strategies to resume normal life during postoperative recovery.
Purpose The aim of this study was to examine the psychometric properties of the Spanish version of the Experience of Caregiving Inventory (ECI-S), which is designed to assess the caregiver's appraisal of the impact of caring for a relative with a serious mental illness. Methods A cross-sectional study was conducted among 320 caregivers of a relative with an eating disorder to examine: (a) descriptive statistics; (b) internal consistency reliability; (c) the fit of the original ten-factor structure of the ECI through exploratory factor analysis, using a semi-confirmatory approach, for each subscale individually, and (d) concurrent validity. A total of 307 caregivers completed the scale. Results Reliability of the ECI subscales scores was acceptable (alpha = 0.63-0.89). Results replicated the original ten-factor structure of the instrument. The concurrent validity was supported by correlations of the ECI-negative subscale with psychological distress (GHQ-12, 0.43), and with depression and anxiety (HADS, 0.48 and 0.49, respectively). Conclusions The Spanish version of the ECI (ECI-S) demonstrated good psychometric properties in terms of validity and reliability that were similar to the original version. It is an acceptable and valid instrument for assessing the impact on family members of caring for a relative with an eating disorder and can be recommended for use in clinical settings in Spain.
Aims Studies on the frequency of caregiver involvement in representative inpatient samples are scarce. The aim of our study was to conduct a representative survey on caregiver involvement in routine inpatient care involving all three parties (patients, caregivers, psychiatrists). Therefore, we performed face-to-face interviews consisting of open-ended questions to gain a deeper understanding of when and how caregivers are involved in care treatment and to identify which topics are mainly discussed. Methods This cross-sectional survey included inpatients from 55 acute psychiatric wards across ten psychiatric hospitals, their treating psychiatrists and, when possible, their caregivers. In total, we performed semi-structured face-to-face interviews with 247 patients, their treating psychiatrists and 94 informal caregivers. Each psychiatrist named the next two to three patients to be discharged. After a patient had given informed consent, the interview was performed by a researcher. In addition, the psychiatrist and, when possible, the primary caregiver identified by the patient, were also interviewed. Results It was perceived by both patients and psychiatrists that contact between caregiver and psychiatrist had taken place in one-third of the patient cases. Predictors for psychiatrist-caregiver-contact were revealed in the patient's diagnosis (schizophrenia), a lower history of inpatient stays, and the respective hospital. According to psychiatrists the most frequent subjects of discussion with caregivers involved therapeutic issues and organisational and social-psychiatric topics (e.g. work, living and social support). Patients and caregivers stated that psychiatric treatment and the diagnostic classification of the mental illness were the most frequent topics of conversation. For all three groups, the most often cited reason for missed caregiver involvement was the subjective perception that a caregiver was not in fact needed. Conclusions Whether or not caregivers were contacted and involved during an inpatient stay strongly depended on the individual hospital. The frequency of involvement of caregivers can certainly be increased by changing processes and structures in hospitals. All three parties (patients, caregivers and psychiatrists) most often stated that the caregiver was not involved in the treatment because they thought it was unnecessary. Evidence demonstrates the positive effect of caregivers' involvement on the therapeutic process but also on the well-being of the caregiver, therefore it is necessary to increase awareness of this evidence among all three interest groups.
The purpose of the current descriptive qualitative study was to reveal experiences of family caregivers of individuals with chronic psychiatric illness. Family caregivers who provided care to 16 individuals with chronic mental illness were interviewed. Three themes emerged from the interviews: Illness Management, The Caregiver's World: Changes and Effects, and Coping From the Caregiver's Point of View. Understanding the experiences of family caregivers contributes to content development of family intervention programs.
Purpose This study was aimed at investigating the psychometric properties of the Family Crisis Oriented Personal Evaluation Scale (F‐COPES) for Turkish society, which assesses the coping skills of caregivers of individuals with chronic mental illnesses. Design and Methods The study was conducted with 153 family caregivers of patients with a chronic mental illness admitted to the inpatient and outpatient units of two university hospitals and İzmir Schizophrenia Solidarity Association. For the language validity, the translation‐back translation method was performed, for the content validity, expert opinions were obtained, for the construct validity, exploratory and confirmatory factor analysis was performed. For the reliability analysis, Cronbach α reliability coefficient was calculated and the test‐retest reliability analysis was performed. Findings The content validity index of the scale was 0.96. The Cronbach's α reliability coefficient for the overall scale was .80. Factor loadings of the subscales ranged between 0.56 and 0.69 for the Acquiring Social Support subscale, between 0.43 and 0.74 for the Reframing subscale, between 0.53 and 0.74 for the Seeking Spiritual Support subscale. The model fit indexes were as follows: χ2 = 176.369, df = 116, χ2/df = 1.52, RMSEA = 0.059, CFI = 0.90, IFI = 0.91, GFI = 0.88. Practice Implications The results of the present study show that the levels of psychometric properties of F‐COPES in Turkish society are acceptable. It is thought that it would be useful to use the F‐COPES in the assessment of coping behaviors of individuals who give care to patients with a chronic mental illness and that it can be used as measurement tool in studies to be conducted with caregivers of patients with a chronic mental illness to assess their coping skills.
Causal attributions of mental illness have received substantial attention given their influence on help-seeking patterns of individuals and the level of engagement with health services. Few studies, however, have examined caregivers’ perspectives of their relatives’ illness. The current study aimed to examine caregivers’ causal attributions of their relatives’ mental illness and its association with perceived stigma in a multi-ethnic Asian sample. Primary caregivers (N = 350) of psychiatric outpatients were recruited from a psychiatric hospital. The attribution and stigma sections of the Family Interview Schedule (FIS) were utilized to obtain caregivers’ causal report of their relatives’ illness and stigma perception. Logistic regressions were performed to examine the socio-demographic and diagnostic correlates of the four categories of causal attributions (psychosocial, biological, drug-/substance use-related, supernatural). The majority of caregivers identified psychosocial causes, followed by biological, supernatural, and lastly drug-/substance use-related causes for their relatives’ illness. Marital status, religion, employment status and the diagnosis of depressive disorders were significant correlates of biological attributions. Ethnicity and not knowing their relatives' diagnosis were significantly associated with psychosocial attributions. For drug-/substance use-related attributions, ethnicity was the only significant correlate. Supernatural attributions did not yield any significant associations. Caregivers who endorsed drug-/substance use-related reasons also reported significantly higher stigma than caregivers who did not endorse these attributions. A tendency to endorse biological and psychosocial causes for their relative’s illness was noted among caregivers. Further research on caregivers’ causal attributions is warranted to account for and replicate current study findings.
Researchers examined questions of caregivers for individuals with posttraumatic stress disorder (PTSD) by means of a) a content analysis and b) a thematic analysis of posts on an online peer support forum. A total of 292 question posts were analyzed. Content analysis categories were based on previous research and included question motivation (cognitive, emotional, and social) and content (symptoms, prognosis, medication/treatment, coping, support, and seeking reassurance). Three newly identified themes (PTSD behavior identification and response, interpersonal interactions with trauma survivors, and healthcare system concerns) were generated through the thematic analysis. These overarching themes regarding information needs, and their subcategories, are discussed in detail. This study provides a preliminary examination of the information needs of PTSD caregivers, offers suggestions for future research, and discusses implications for the healthcare system.
Background of the Study: The present study aimed to determine the effectiveness of family education on depression, anxiety, and stress of family caregivers of the patients with schizophrenic disorders hospitalized in Zahedan Psychiatric Hospital. Methods: The present study was a randomized clinical trial; it evaluated the effect of a four-week psychological training program on 100 family caregivers of the patients with schizophrenic disorders hospitalized in Zahedan Psychiatric Hospital. Depression, anxiety, and stress of caregivers were determined using DASS, version 21, questionnaire. Results: Based on the analysis, the effect of education was only observed in the nurses' group, and the level of anxiety, stress, and depression decreased significantly. Having compared between the nurse and control group, the anxiety level in this group decreased significantly after the training program, and the two factors of stress and depression decreased considerably and tended to be significant. Results: In summary, the present study has shown that nursing education had a significant impact on anxiety, stress and depression factors in the patients' families; this can be employed as a new approach to improve schizophrenia patients and their families.
Family members of Veterans with posttraumatic stress disorder (PTSD) face high levels of burden that are poorly addressed by existing mental health services. Widely distributed mobile interventions could play a role in addressing these unmet needs. The purpose of this study was to characterize caregiver burden in those seeking a mobile app for self-management of stress symptoms and to develop a model to guide mobile interventions for family members. Those living with a Veteran with PTSD (n = 212) and interested in using a mobile intervention agreed to participate. The majority reported moderate-to-severe levels of depression (60%) and/or caregiver burden (59%). Relationship quality, communication, and self-efficacy for caregiving were the strongest predictors of negative outcomes (p’s <.001), and qualitative results identified several additional unmet needs (e.g. relationship concerns, safety concerns). This study identifies potential mechanisms by which a mobile app could improve family functioning in the context of PTSD.
BACKGROUND: The Organisation for Economic Cooperation and Development reports that one in every two people experiences a mental illness in their lifetime, and developed policy guidelines to address the impact of mental health-related issues on employment and health. The results of this policy initiative have been reported in many member countries but no survey findings are available yet for Japan. Previous studies in Japan focused on the social costs of mental illness, but little empirical evidence exists on burdens created by mental illness in individual households. AIMS: This study investigated the effects of mental illness and mental distress on family members' employment and sleep time. Employed men and women family members and unemployed women family members who wanted to work were included in the study. METHODS: Japanese survey data from the 2013 Comprehensive Survey of Living Conditions were analyzed to identify the above-mentioned effects. A propensity score matching method was used to create a valid comparison group for family members of patients with mental illness and distress. RESULTS: For depression, family member average weekly work hours decreased by a range of 1.06 (p%lt;0.01) to 1.18 (p<0.01) for men, and 0.53 (p<0.1) to 1.06 (p<0.05) for women. For dementia (termed "major neurocognitive disorder" in the DSM-5), there were no statistically significant effects on work hours in men, but the work hours of employed women increased, ranging from 1.15 (p<0.05) to 1.25 (p<0.01). Mental illness in a family member also significantly influenced future employment prospects of unemployed women. In family members of patients with dementia, sleep time decreased by a range of 3.6 minutes (p<0.05) to 4.8 minutes (p<0.01) per night for men and 12 minutes (p<0.01) per night for women. DISCUSSION AND LIMITATIONS: These findings can add to the existing evidence on the effects of mental illness and distress on family members' work hours and sleep time in Japan, which are consistent with research from other countries such as Germany, the UK, and the US. This study has two limitations. First, the magnitude of the effect of mental illness is limited with respect to the illness category in our study, since the severity of the condition and the impact on actual daily life may vary across categories or differ even within the same category. Second, measurement error might exist in the self-reported mental illness measures. POLICY IMPLICATIONS: First, cooperation and mutual support between employers and the community are necessary to support working family caregivers by allowing them to adjust work schedules to accommodate caregiving responsibilities. Second, social institutional policies are needed that reduce the burden of informal caregiving for family members with mental illness and increase access to long-term care for those in need. Third, since mental illness and distress have been shown to affect family members' sleep schedules, health care programs must focus on promoting caregivers' general health. IMPLICATIONS FOR FUTURE RESEARCH: To further address the burden of mental illness and distress on family members, future research should examine illness severity as measured by Activities of Daily Living.
Background: Having a patient with borderline personality disorder (BPD) in the family is a complicated and stressful experience. The caregivers’ experiences and the problems they have in care of patient with BPD have remained unknown. The aim of this research was to explore the experiences of the caregivers while living with BPD patients in Iran. Methods: This interpretive phenomenological research was performed on 10 caregivers of patients with BPD at Ibn-sina Hospital in Mashhad, Iran, in 2019. Purposeful sampling was used for sampling. Data were collected through semi-structured interviews and saturated after 16 interviews. The analysis of data was concurrently carried out using the method proposed by Diekelman (1989). The MAXQDA software (Ver.10) was used for data organization. Results: The participants in this study were aged 25 to 55 years. After data analysis, three themes (“life in hell”, “chain to the feet”, and “black shadow of stigma”) and six sub-themes (“disrupted from the life”, “self-discrepancy”, “care bottlenecks”, “in the fence of restriction”, “society dagger” and “resort to secrecy”) emerged. Conclusion: The results of this study showed that the caregivers of patients with BPD during the period of care were faced with a variety of problems. It is suggested that health policy-makers should pay more attention to the problems related to the mental health of caregivers.
Due to inadequate human and financial resource support, the development of mental health services in Cambodia has been undertaken by various non-governmental organizations (NGOs). Schizophrenia is the most common functional psychotic disorder, causing severe and chronic symptoms, and the programs provided by the NGOs should have enhanced the quality of life (QoL) of patients and their caregivers; however, epidemiological research, which is a driving force behind the recognition of mental health as a global public health concern, is lacking for schizophrenia in Cambodia. This study therefore aimed to create QoL evaluation questionnaires available in Khmer (the Cambodian language) for patients with schizophrenia and family caregivers, and to identify the social determinants and predictors of their QoL. This cross-sectional study recruited 59 patients and 59 caregivers attending three clinics operated by two NGOs: the Transcultural Psychosocial Organization (TPO) Cambodia and the Supporters for Mental Health (SUMH) Cambodia. We conducted linguistic validation of the Schizophrenia Quality of Life Questionnaire 18-item version (S-QoL 18) and the Schizophrenia Caregiver Questionnaire (SCQ), then analyzed correlations between the QoL dimensions and socio-demographic factors. The main findings of this study were as follows: 1) the newly created Khmer versions of S-QoL 18 and SCQ are relatively good psychometric tools that are suitable for research to identify patients' and caregivers' needs to improve their QoL; and 2) engaging in paid work or being of the post-Khmer Rouge generation results in higher QoL for patients, but having low household economic status or being affected by chronic disease leads to lower QoL for family caregivers. These findings are useful for enabling community mental health professionals and aid organizations to create programs to lessen the patient and caregiver burden in Cambodia. Further research is necessary to develop practical projects that will improve patients' and caregivers' QoL in various clinical settings in Cambodia.
(1) Background: First-hand accounts of lived experience of suicide remain rare in the research literature. Increasing interest in the lived experience of suicide is resulting in more opportunities for people to participate in research based on their personal experience. How individuals choose to participate in research, and their experience of doing so, are important considerations in the ethical conduct of research. (2) Methods: To understand the experience of providing care for someone who has previously attempted suicide, a cross-sectional online community survey was conducted. This survey concluded with questions regarding motivation to participate and the experience of doing so. Of the 758 individuals who participated in the survey, 545 provided open-ended text responses to questions regarding motivation and 523 did so for questions regarding the experience of participating. It is these responses that are the focus of this paper. Data were analysed thematically. (3) Results: Motivations to participate were expressed as primarily altruistic in nature, with a future focus on improving the experience of the person who had attempted suicide alongside carers to ease distress. The experience of participating was difficult yet manageable, for all but a few participants. (4) Conclusions: With the increasing interest in first-hand accounts of suicide, how individuals experience participation in research is an important focus that requires further attention.
Introduction Cognitive behavioural family intervention (CBFI) may be an effective brief psychosocial intervention for people diagnosed with severe mental illness (SMI) and their families. No systematic review has summarized the effectiveness of CBFI. Aim This review aimed to systematically examine the trial evidence of the effectiveness of CBFI versus treatment as usual (TAU) on improving the outcomes of people diagnosed with SMI and their families. Method Eligible randomized controlled trials were identified from nine databases. Three investigators independently took part in selection of articles, data extraction and risk assessment. Pooled treatment effects were computed using random-effects models. Results Four studies consisting of 524 participants were included. The risk of bias was low–unclear in most areas. The pooled CBFI effect on four service user outcomes including overall positive symptoms, delusions, overall negative symptoms and general psychopathology was significantly improved at post-treatment, compared with TAU, whereas effects on hallucinations and insight were equivocal. Discussion The findings reveal that CBFI is superior to TAU in treating positive and negative symptoms immediately following the intervention. Implications for Practice Mental health nurses may practise CBFI to enrich the psychiatric nursing service and promote nurse-led intervention. However, there is currently no substantial evidence that the intervention is effective over the longer term.
Introduction Internalized stigma is prevalent among patients diagnosed with schizophrenia. Their family caregivers (FGs) also suffer from internalized stigma, but limited studies have addressed the issue. Aim The aim of this study was to determine the severity of internalized stigma and its correlates among FGs of patients diagnosed with schizophrenia in Changsha, Hunan, China. Methods A consecutive sample of 299 FGs was recruited at the psychiatric outpatient department of a tertiary hospital in Changsha. This study explored the relationships between internalized stigma and potential factors. Results Nearly 50% of the FGs perceived mild internalized stigma, 24% of the FGs reported moderate level, and 6% had a severe level. Internalized stigma was associated with patients’ characteristics (severity of illness) and FGs’ characteristics (hope, social support, passive coping, age, education background, residence with the patient, caring for a male or a young patient and difficulty in supervising medication). Discussion and implications for practice Informative and psychosocial interventions based on education and contact for FGs such as enhancing mental health literacy programs, cognitive therapies and group psychoeducation can provide FGs with a better understanding of schizophrenia and to promote hope, active coping and social support.
Background: Mental illness is associated with misunderstanding and unfavorable attitude worldwide. The belief in its spiritual nature made traditional healers the main service consultants for mentally ill patients. The present study is a cross-sectional study conducted among 425 main family caregivers of mentally ill patients at Assiut University Hospital. The objective of the study was to assess the caregivers’ knowledge and attitude towards mental illness as well as their health-seeking behavior for their mentally ill relatives. Results: The studied caregivers had low scores of knowledge and attitude towards mental illness. Age of the caregivers, their education, and the type of first consulted care and aggressive behavior of the mentally ill relatives were the significant predictors of caregivers’ knowledge and attitude towards mental illness. The majority of caregivers (80.2%) sought advice for the first time from traditional healers. Traditional healers referred only 16.4% of caregivers’ mentally ill relatives to psychiatric care. Conclusion: The studied caregivers had poor knowledge and a negative attitude towards mental illness. Traditional healers were the main consulted care. So, increasing awareness of mental illness is highly recommended.
Background Family education programs (FEPs) target caregiving-related psychological distress for carers of relatives/friends diagnosed with serious mental health conditions. While FEPs are efficacious in reducing distress, the mechanisms are not fully known. Peer group support and greater mental health knowledge are proposed to reduce carers' psychological distress by reducing stigmatising attitudes and self-blame, and strengthening carers' relationship with their relative. Methods Adult carers (n = 1016) who participated in Wellways Australia's FEP from 2009 to 2016 completed self-report questionnaires at the core program's start and end, during the consolidation period, and at a 6-month follow-up. Those who enrolled early completed questionnaires prior to a wait-list period. We used linear mixed-effects modelling to assess the program's effectiveness using a naturalistic wait-list control longitudinal design, and multivariate latent growth modelling to test a theory-based process change model. Results While there was no significant change over the wait-list period, psychological distress, self-blame and stigmatising attitudes significantly decreased, and communication and relationship quality/feelings increased from the core program's start to its end. Changes were maintained throughout the consolidation period and follow-up. Peer group support significantly predicted the declining trajectory of distress. Peer group support and greater knowledge significantly predicted declining levels of self-blame and stigmatising attitudes, and increasing levels of communication. Conclusions This is the first study to quantitatively validate the mechanisms underlying the effect of FEPs on carers' psychological distress. Peer group support is key in modifying carers' appraisals of their friend/relatives' condition. Continued implementation of FEPs within mental health service systems is warranted.
Background: Informal caregivers of people suffering from depressive disorders go through a psychological recovery process. This process is dynamic, deep, catalyzed by hope and optimism and characterized by stages from which specific needs ensue. This study aimed to describe the stages of the psychological recovery process and the level of optimism among informal caregivers of psychiatric inpatients suffering from depressive disorders in order to provide adapted nursing support and psychoeducation and facilitate a patient's own recovery. Methods: A descriptive exploratory study was conducted using a convenience sample of 29 informal caregivers. Participants filled out a sociodemographic questionnaire, a specially adapted Stages of Recovery Instrument (STORI) and the Life Orientation Test-Revised (LOT-R). Results: A mean optimism score of 16.41 showed that informal caregivers are close to the level of the general European population. The sample included all the stages of the recovery process, with 34.5% of participants being in the growth stage. Informal caregivers' stages in the recovery process were negatively associated with the patient's length of illness (Rho = -.683, p = .000) and positively associated with the caregivers' level of optimism (Rho = .564, p = .001). Conclusion: During the inpatient treatment of a close relative suffering from a depressive disorder, informal caregivers go through an individual psychological recovery process involving several stages. In addition to caring for inpatients, nurses are encouraged to meet and support caregivers as soon as possible in their individual recovery process. Furthermore, the development of a suitably adapted clinical tool would facilitate the assessment of the informal caregiver's stage in the recovery process within care units. A multidisciplinary approach is needed in this domain.
Background: Chronic disease is a leading cause of death globally, where inadequate fruit and vegetable consumption and inadequate physical activity are consistently implicated as key contributing risk factors for such diseases. People with a mental health condition are reported to experience a higher prevalence of such risks and experience an increased morbidity and mortality from resultant chronic disease. Despite guidelines identifying a need for services accessed by people with a mental health condition to provide care to address such health risk behaviours, sub-optimal care is frequently reported suggesting a need for innovative strategies to increase the provision of physical health care. An exploratory study was conducted to examine: 1) family carers' expectations of care provision regarding fruit and vegetable consumption and physical activity by health and community services for people with a mental health condition; 2) carer's own health risk behaviour status and perceptions of the influence of the health risk behaviours on mental health; and 3) possible associations of socio-demographic, clinical and attitudinal factors with carer expectations of care provision for fruit and vegetable consumption and physical activity. Methods: Family carers (n = 144) of a person with a mental health condition completed a cross-sectional survey. Participants were members of a mental health carer support organisation operating in New South Wales, Australia. Results: A high proportion of participants considered care for fruit and vegetable consumption and physical activity respectively should be provided by: Mental health hospitals (78.5, 82.7%); community mental health services (76.7, 85.9%); general practice (81.1, 79.2%); and non-government organisations (56.2, 65.4%). Most participants perceived adequate fruit and vegetable consumption (55.9%), and physical activity (71.3%) would have a very positive impact on mental health. Carers who perceived adequate fruit and vegetable consumption and physical activity would have a positive impact on mental health were more likely to expect care for such behaviours from some services. Conclusions: The majority of participants expected care for fruit and vegetable consumption and physical activity be provided by all services catering for people with a mental health condition, reinforcing the appropriateness for such services to provide physical health care for clients in a systematic manner.
Background Caregivers play a pivotal role in providing care for mentally ill patients. Increase in caregiver burden can make them vulnerable to mental illness themselves.Aims We assessed the severity of burden of care and its association with depression, anxiety and quality of life among caregivers of patients with alcohol use disorder (AUD) and schizophrenia. Methods This was an observational, cross-sectional, single-centred study of 50 consecutive caregivers of patients with AUD and schizophrenia. Participants were recruited from the psychiatry outpatient department of a tertiary care hospital between January and June 2017. The caregivers were further assessed by demographic details, Hospital Anxiety Depression Scale for assessment of depression and anxiety, Zarit Burden Interview for assessment of caregiver burden and WHO Quality Of Life-BREF for assessment of quality of life. Statistical data were analysed using GraphPad InStat V.3.06 (California). Multiple linear regression analysis was applied to identify the predictors of caregiver burden. Results Burden of care experienced by caregivers of patients with AUD is as high as that of caregivers of patients with schizophrenia (U=1142.5, p=0.46). Caregivers experiencing high burden of care are likely to have symptoms of anxiety (U=22, p<0.001), depression (U=32, p<0.001) and poor quality of life (U=84.5, p<0.001). Female caregivers are likely to experience higher burden of care (U=819.5, p=0.006). For caregivers of patients with schizophrenia, anxiety, environmental health, socioeconomic status and patients’ occupation can predict burden of care, while for caregivers of patients with AUD, depression and environmental health can predict burden of care. Conclusion Our study suggests that caregivers of patients with AUD experience burden of care as high as that of caregivers of patients with schizophrenia. Caregivers with high burden of care are more likely to have depression, anxiety and poor quality of life. Trial registration number CTRI/2017/03/008224.
National Institute for Health and Care Excellence guidance suggests that carers of individuals with a diagnosis of borderline personality disorder experience high levels of psychological distress, yet few services in the UK offer specific support to this group of carers. This article will describe the development of a psychoeducational carers' group based on schema theory (Young et al, 2003), including the development of the role of carer experts-by-experience as group co-facilitators. Initial outcome data from the pilot suggest that carers are highly satisfied with the group and that it improves their knowledge, understanding and personal well-being.
Background: Several studies show the effectiveness of face-to-face interventions with families in improving the prognosis of patients with severe psychiatric disorders and their relatives; however, the effectiveness of online interventions is poorly understood. The current study aims to provide an overview of evidence for the effectiveness of online treatments (web/app) for patients with severe psychiatric disorders and their families.; Method: We performed a systematic review of online treatments for informal family caregivers of patients with a severe psychiatric disorder. The study psychological interventions had to have been administered in an exclusively online format (app, internet) and aimed at families of patients with severe mental disorder (at least one of first episode psychosis, schizophrenia, schizoaffective, bipolar disorder, and psychotic disorder).; Results: Of a total of 1331 articles, we identified 9 viable studies; 4 randomized clinical trials, and 5 nonrandomized clinical studies. The present study is the first systematic review in this area. Online interventions were well accepted, with good adherence and satisfaction among the caregivers and patients and improved the symptoms of both caregivers and patients.; Limitations: Clinical and methodological diversity of the studies.; Conclusions: Burden improved, and perceived stress decreased in families. Moreover, the severity of positive symptoms decreased and fewer hospitalizations were recorded in patients than in the control group. Therefore, online interventions are a promising therapeutic approach for patients with severe mental disorder and their families. However, more studies-particularly randomized clinical trials-are needed in this area.
Aim: The provision and implementation of early intervention for psychosis services (early intervention services [EIS]) has received increasing attention over recent years. Maximizing engagement with EIS is of clinical and economic importance, and exploring the experiences of those who access EIS is vital. Although research has been conducted exploring the experiences of engaging with EIS from both a service user and carer/family member point of view, these data have not been systematically collated to generate new understanding. The primary aim of this study is to review, critically appraise and synthesize qualitative findings relating to the experiences of service users and/or carers and family members engaging with EIS.; Methods: Four databases were systematically searched. Studies were analysed using an inductive thematic analysis approach, within a critical realist epistemological framework. Studies were critically appraised using the critical appraisal skills programme tool.; Results: Fourteen papers were identified for inclusion. Three main themes were identified: the importance of a personal relationship with an EIS staff member, the impact of this relationship and consideration of life after EIS. The importance of a strong relationship with EIS staff was the most prominent theme throughout the papers reviewed.; Conclusions: The quality of the therapeutic relationship with at least one EIS staff member was the single most important factor in determining whether the experience of accessing EIS was a positive or negative one. The majority of the studies reviewed were conducted in the United Kingdom or Australia. Therefore, more research across countries is needed to understand transferability of findings.
Background: Family accommodation (FA) is a phenomenon whereby caregivers assist/facilitate rituals or behaviors related to obsessive–compulsive disorder (OCD). FA, however, has been explored primarily in the Western population, and it is unclear to what extent it might be present in diverse cultural settings. At present, little is known about the extent and predictors of FA among caregivers of adult OCD patients in India. Aims: The study aims to assess the extent, clinical correlates, and predictors of FA in the caregivers of adults with OCD. Settings and Design: Cross-sectional study conducted in an outpatient setting in a tertiary-care hospital. Materials and Methods: Hundred and one adult patients of either gender with Diagnostic and Statistical Manual of Mental Disorders-5 diagnosis of OCD and 101 caregivers were included. The patients were assessed using Yale–Brown Obsessive Compulsive Scale (YBOCS), Hamilton Rating Scale for Depression (HAM-D), World Health Organization Disability Assessment Schedule Version 2.0 12-item version (WHO-DAS 2.0.12), Clinical Global Impressions Scale for Severity (CGI-S), and Clinical Global Impressions Scale for Improvement. The FA Scale-Self Rated Version (FAS-SR) was applied on caregivers after Hindi translation. Statistical Analysis: Descriptive statistics, group comparisons, and Pearson's product moment correlations were carried out. Multiple linear regression modeling was performed with the total FAS-SR score as the dependent variable. Results: About 92% of caregivers displayed at least some form of FA. Higher scores on HAM-D, YBOCS, WHODAS, and CGI-S were associated with higher scores on FAS-SR scale, which reached statistical significance (P < 0.01). Conclusions: FA in OCD appears to be a frequent phenomenon. Higher FA is associated with higher symptom severity and disability, emphasizing its clinical and research relevance for future studies.
This study explores experiences of mothers in Sweden who care for their adult children suffering from severe mental illness. Using 15 interviews with mothers from 40 to 80 years old, the article examines how predominant professional knowledge and sanism constructs the mothers and their children as deviant and what counterstrategies the mothers develop as a response to these experiences of discrimination. The findings show that the mothers’ experiences are characterized by endless confrontations with negative attitudes and comments that have forced them to go through painful and prolonged processes of self-accusations for not having given enough love, care, support and help in different stages of their children's life. But the mothers’ experiences also reveal important aspects of changes over the life span. As the mothers are ageing, the relationship between them and their children becomes more reciprocal and the ill child may even take the role as family carer.
Introduction: Families provide frontline caregiving support for people with a diagnosis of schizophrenia. However, research primarily addresses correlates of family functioning from primary family caregivers' perspectives.; Aim: To examine perceived family functioning, particularly its concordance within patient-caregiver dyads, and associated factors in families of people living with schizophrenia.; Methods: A cross-sectional, descriptive correlational design was used. A total of 133 dyads of patients and primary family caregivers from inpatient psychiatric rehabilitation services participated. Descriptive statistics, independent sample t test, one-way ANOVA, Pearson's correlation coefficients, Intraclass correlation coefficient, and stepwise multiple linear regression analyses were applied.; Results: Family functioning was perceived as impaired by patient-caregiver dyads, and there existed a concordance in this regard. Patients' and family caregivers' education levels, patients' suicidality, number of previous hospitalisations, and quality of family-centred care correlated with patients' and primary family caregivers' family functioning.; Discussion: Findings highlight the importance of patient- and family-reported family functioning with implications to address individual and collective concerns.; Implications For Practice: Evidence-based family interventions are crucial for assisting vulnerable families in promoting family functioning. Mental health nurses should facilitate collaboration and open dialogue concerning perspectives of patients and families to improve delivery of comprehensive mental health care.
Introduction: Caregivers play a critical role in detecting and managing psychotic symptoms before young people diagnosed with early psychosis present to care. Little is known about the specific needs of caregivers in navigating pathways to care for their loved one.; Aim: The purpose of this study is to understand the needs of family caregivers and their ways of coping on the pathway to care for early psychosis.; Method: Twenty family caregivers of individuals diagnosed with early psychosis participated in three focus groups that explored caregiving needs provision for early psychosis. Thematic analysis was conducted.; Results: We identified four major themes: education and skill training; raising wider awareness, such as police offers and teachers; adopting technologies for coping; effective coping strategies.; Implications For Practice: These findings provide important insights into caregiving needs and the ways for nurses to address those needs and better equip carers to recognize early symptoms, monitor behavior changes, and navigate care to support people with first episode psychosis. Nursing researchers can use the information to develop on-demand and tailored family-centered intervention in addressing caregivers' needs in education, increasing awareness of early psychosis, and fostering effective coping strategies.
Introduction: Around 60% of carers of relatives with mental health problems report feeling unrecognised by professional health care and many report a lack of engagement, shared decision making and information sharing. There is a paucity of research examining these issues for carers who are also mental health professionals.; Aim: This was an exploratory study to (i) explore the extent of this role among health service staff, (ii) gather an indication of the issues faced by carers when interacting with the health system, and (iii) test the feasibility of conducting research.; Method: Mental health professionals in mental health services completed an online survey that assessed the frequency, content and satisfaction of the experiences of carers.; Results: The sample comprised 453 mental health professionals (74% female), 52% being carers. Half of carers reported having therapist contact and 25% were satisfied with the contact. Negative experiences were related to Information, Decision making and Continuity of care.; Discussion: There was a high frequency of mental health professionals who were carers. The majority were dissatisfied and this was primarily in relation to communication with services.; Implications For Practice: Improving information sharing through training of staff and identification of the system barriers is likely to enhance experiences for service users and families.
Life review (LR) therapy has received considerable support as an effective treatment for depression among older adults. Researchers believe that providing LR does not require extensive training and can be done by family members who are not psychiatric professionals. If so, then training family caregivers to provide LR is a potential strategy for alleviating the shortage of resources for treating depression among the growing population of older adults experiencing depression. A pilot study that explored the feasibility of that strategy had mixed results. Seventeen (89%) of 19 caregiver–care recipient dyads completed the current study, and caregivers provided the LR with self-reported fidelity. However, there was lack of statistically significant improvement in this convenience sample. Implications are provided for future assessments of this strategy with a larger study of caregiver and care recipient dyads.
Objective: To explore the impact of resiliency factors on the longitudinal trajectory of depressive symptoms in patients admitted to the Neuroscience Intensive Care Unit (Neuro-ICU) and their family caregivers.; Materials and Methods: Patients (N = 102) and family caregivers (N = 103) completed self-report assessments of depressive symptoms (depression subscale of the Hospital Anxiety and Depression Scale; HADS-D) and resiliency factors (i.e., mindfulness and coping) during Neuro-ICU hospitalization. The HADS-D was administered again at 3 and 6 months after discharge. The Actor-Partner Interdependence Model (APIM) was used to assess patient-caregiver interdependence.; Results: Baseline rates of clinically significant depressive symptoms were high among patients (23%) and caregivers (19%), and remained elevated through 6-months. Higher depressive symptoms predicted higher levels of symptoms at the subsequent timepoint (ps < 0.05). Higher baseline mindfulness and coping were associated with lower levels of depressive symptoms at all timepoints (ps < 0.001). APIM analysis showed that one's own higher baseline mindfulness was associated with concurrent levels of depressive symptoms in a partner (p < 0.05).; Conclusions: Depressive symptoms in Neuro-ICU patient-caregiver dyads are high through 6 months. Mindfulness is protective against depressive symptoms and interdependent between patients and caregivers. Early, dyadic, mindfulness-based interventions may prevent the development of chronic depression in both patients and caregivers.
Evidence suggests that young carers are less likely to complete or do well in secondary school compared with young people without caring responsibilities. Positive engagement at school is an important correlate of school outcomes, yet quantitative evidence on the factors contributing to young carers’ school engagement is lacking. Drawing on the results of a national school-based survey of Australian children aged 8–14 years (N = 5220) in which about 9% of the sample identified as carers (N = 465), this paper compares the school engagement of non-carers, young carers of a family member with disability, and young carers of a family member with a mental illness or using alcohol/drugs. The analysis shows that school engagement of young carers of people with disability is not significantly different from that of non-carers, but school engagement among young carers of people with a mental illness or using alcohol/drugs is significantly lower. Among this latter group, young carers who are themselves with disability report particularly low levels of engagement. The study concludes that improved support focused on young carers of people with a mental illness or using alcohol/drugs is needed to improve their school engagement.
Objectives: Prior literature has documented the global burden of serious mental illnesses. The present study aimed to compare the sleep quality in caregivers of older patients with schizophrenia spectrum and bipolar disorders with control participants who did not serve as caregivers. Methods: We performed a case-controlled, cross-sectional study among family caregivers of older patients with psychotic disorders in Razi Hospital, Tunisia. Subjective sleep quality was assessed using the Pittsburgh Sleep Quality Index Scale (PSQI). Results: Fifty caregivers of older patients (≥ 60 years) with schizophrenia spectrum and bipolar disorders, and 50 matched controls were enrolled. The three sub-dimensions of the PSQI, namely subjective sleep quality, sleep duration, and sleep efficiency, as well as overall PSQI scores, were worse for caregiver participants. Hierarchical multiple regression analyses predicting PSQI scores revealed that caregivers' age and marital status were the only significant predictors in the final model. Conclusions: Older adults with severe mental disorders constitute a vulnerable population which generates a significant burden of care, and impacts their caregivers' subjective sleep quality. Clinical Implications: Family interventions, including sleep interventions, should be considered as an integral component of treatment for serious mental illnesses. When promoting sleep quality, older and single caregivers should be targeted.
Introduction: Family members are important supports for veterans with Posttrauamtic Stress Disroder (PTSD), but they often struggle with their own distress and challenges. The Veterans Affairs-Community Reinforcement and Family Training (VA-CRAFT) website was designed to teach family members of veterans with PTSD effective ways to interact with their veterans to encourage initiation of mental health services as well as to care for themselves and improve their relationships. This article presents a pilot investigation of VA-CRAFT.; Materials and Method: Spouse/partners of veterans who had screened positive for PTSD but were not in mental health treatment were randomized to either use the VA-CRAFT website (n = 22) or to a waitlist control condition (n = 19) for 3 months. Veteran mental health service initiation was assessed posttreatment. Spouse/partner distress, caregiver burden, quality of life, and relationship quality were assessed pre and posttreatment. The study was approved by the Minneapolis VA Health Care System Institutional Review Board (IRB).; Results: Differences between groups on veteran treatment initiation were small (Phi = 0.17) and not statistically significant. VA-CRAFT participants reported large and statistically significantly greater decreases in overall caregiver burden (η2 = 0.10) and objective caregiver burden (η2 = 0.14) than control participants. Effects were larger for those with greater initial distress. Effects sizes for other partner outcomes were negligible (η2 = 0.01) to medium (η2 = 0.09) and not statistically significant. Postintervention interviews suggested that only 33% of the VA-CRAFT participants talked with their veterans about starting treatment for PTSD during the trial.; Conclusion: Results from this pilot trial suggest that VA-CRAFT holds initial promise in reducing caregiver burden and as such it could be a useful resource for family members of veterans with PTSD. However, VA-CRAFT does not enhance veteran treatment initiation. It may benefit from enhancements to increase effectiveness and caregiver engagement.
Purpose: The aim of this study is to determine the perceptions of both individuals with severe mental illness and their family caregivers regarding the physical health status of patients. Design and methods: A descriptive qualitative design was implemented, and 11 individuals with severe mental illness and 12 caregivers were analysed. Findings: Two main themes emerged as a result of the content analysis: a "physical health‐related barriers" theme and a "need for better physical health" theme. Practice implications: Patients and their family caregivers experience a number of barriers and difficulties related to maintaining and improving physical health. Psychiatric nurses should recognize these barriers and assist in empowering both patients and their family caregivers to overcome them.
An exploratory study of caregiver burden associated with family caregivers enrolled in the VA Caregiver Support Program who assist veterans with serious invisible injuries sustained post September 11, 2001. A mixed methods analysis was completed with a retroactive chart review of already collected data (172 participants) in addition to a phenomenological query of 16 participants. Results: T-tests resulted in a significantly higher caregiver burden score with caregivers who had children in the home (M = 6.84; SD = 3.21) versus those who did not (M = 5.57; SD = 2.75), t (160) = −2.36, p =.02. An ANOVA across caregiver role (parent, spouse, significant other and other) and the Zarit Burden Inventory (ZBI) resulted in a significant difference (F [3, 159] = 1.59, p <.01, with spousal caregivers having a significantly higher ZBI score (M = 6.83; SD = 3.10) than parental caregivers (M = 4.46; SD = 2.70). The phenomenological research resulted in 22 major themes (family adjustment, subjective demands, coping techniques, social support, VA/DOD, self-care, intimacy, role strain, financial resources, life course, obligation, rewards, isolation/loss of self, reciprocity, stigma, community resources, spiritual support, tools, hope, uncertainty, guilt, leash syndrome) which supported quantitative findings. Conclusions: Caregivers and their families had a difficult time adjusting post injury. Caregivers relied heavily on their own coping mechanisms to adapt to their new role and did not find social support to be helpful with caregiving. Spousal caregivers and caregivers with children in the home had more difficulty adjusting when compared with parental caregivers.
We focused on carers of subjects suffering from eating disorders (ED), and studied the characteristics that mostly expose them to high levels of stress, anxiety, depression and expressed emotion, favoring the accommodation of the family system to the cared person. We administered the accommodation and enabling scale for eating disorders (AESED) questionnaire, the family questionnaire (FQ) and the depression, anxiety and stress scale (DASS-21) questionnaire to 97 carers of 62 ED patients, and investigated the carer's characteristics associated with the scores in the three questionnaires. A personal history of ED, being the primary carer, and caring for a person with a diagnosis of anorexia nervosa are the characteristics that contribute most to aggravate the carers' burden in terms of stress, anxiety, depression, accommodation and enabling. Our findings may help doctors to provide effective support to caregivers and eventually improve the treatment of subjects with ED.
Objective: To assess for the validity of a future trial, the current feasibility study aimed to compare the feasibility and efficacy of a web‐ and workshop‐based education intervention for caregivers of adults with eating disorders. Methods: Psychoeducation was provided to caregivers, who were randomly assigned to a web or workshop condition. Independent samples t tests were conducted to analyse the between‐group effect sizes for intervention condition with regard to change over time. A random selection of participants from each intervention provided qualitative feedback about their experiences. Results: Overall, participants reported positive experiences in both education interventions. From baseline to the end of intervention, small between‐group effect sizes were observed for changes in caregiver accommodation, problem‐solving abilities, the quality of psychological health, and the quality of social relationships, favouring the web‐based intervention, and changes in expressed emotion in the family context, caregiver burden, perceived stress, and the quality of the environment, supporting the workshop intervention. Conclusions: There was a difference in initial feasibility of the web intervention. A future large‐scale trial of these interventions is supported by the results of this feasibility study.
Purpose: This study aimed to examine the quality of family‐centered care perceived by primary family caregivers and its influencing factors in mental healthcare practice. Design: A cross‐sectional, correlational study. Methods: A convenience sample of 121 mental health nurses and 164 primary family caregivers of patients with schizophrenia was recruited from acute psychiatric wards and chronic psychiatric rehabilitation wards in three psychiatric hospitals in Taiwan. Structured questionnaires for mental health nurses were designed to examine nurses' attitudes toward schizophrenia and the importance of families in nursing care. Primary family caregivers were assessed to determine their perceptions of quality of family‐centered care. At least one primary family caregiver of patients was matched to a nurse who took major responsibility for the patient during the hospitalization. Data were analyzed with descriptive statistics, Pearson's product‐moment correlations, independent t‐test, one‐way analysis of variance, and stepwise regression analyses. Results: Quality of family‐centered care perceived by primary family caregivers regarding the provision of general and specific information, as compared to enabling and partnership, coordinated and comprehensive care, and respectful and supportive care, was relatively inadequate. Younger and more educated primary family caregivers, having relatives with schizophrenia in acute wards, less supportive nurses' attitudes toward schizophrenia, and the importance of family in nursing care were correlated with poor primary family caregivers' perceptions of quality of family‐centered care. Nurses' supportive attitudes toward schizophrenia and chronic psychiatric rehabilitation wards where patients received care were key factors in determining better quality of family‐centered care. Conclusions: Findings provide a platform for the development of effective continuing education and training programs to equip mental health nurses with supportive attitudes toward mental illness and an integration of the family in nursing care, which will ultimately improve mental health care for families experiencing mental health problems. Clinical Relevance: Efforts in professional training to address stigma and encourage a family‐centered approach into recovery‐oriented practice for practicing mental healthcare providers, including mental health nurses, are recommended.
Aims and Method: To review the literature on the emotional and mental health needs of young carers of parents with mental illness and the extent to which such needs are recognised and supported by professionals. Three databases were systematically searched from 2008 to 2018, and five studies met the inclusion criteria.; Results: The key findings were that young caregivers had a significantly higher dose-response mortality risk than their peers; were at increased risk of mental health difficulties, especially where the ill family member was a parent and had mental illness or misused substances; were overlooked by professionals owing to a lack of awareness; but could derive benefits from their caring role when appropriately supported.; Clinical Implications: Young carers are at increased risk regarding emotional and mental health needs; this risk could be mitigated by professionals recognising the young carer's role and including them in their parent's treatment plan.
Objective: To examine the factors associated with caregivers' burden in individuals providing care to family members suffering from serious mental illness. Methods: This Cross Sectional Study was carried out at Armed Forces Institute of Mental Health, Rawalpindi, from May 2015 to December 2015. A purposive sample of 120 family caregivers (60 males and 60 females, age range= 18-65) who were taking care of patients with serious mental illness (i.e. Major Depressive Disorder, Bipolar Disorder & Schizophrenia) for at least one year were recruited from the hospital and assessed through Zarit Burden Interview (ZBI) and Brief COPE inventory. The decline in functional status, and diminished physical capacity compromising the independent living of the care recipient was assessed through Katz Index of Independence in Activities of daily living (ADL) and Lawton Instrumental activities of daily living (IADL). Results: The results suggest that the longer the duration of illness (F=25.71, p < 0.01), with increased impairments of care-recipients, (decline in functional status, F=21.33, p < 0.001; diminished physical capacity F =32.41, p < 0.001) the more the burden experienced by the caregivers. Moreover, caregivers who were married (t=-2.98, p < 0.01), less educated (t =5.48, p < 0.01), lived in rural area (t = -7.99, p < 0.01), had lower monthly income (t = -4.95, p < 0.01) provide longer hours of caregiving (F=19.12, p < 0.001) and used avoidant coping behavior (F= 56.37, p < 0.001) reported significantly higher caregiver burden than caregivers who were unmarried, more educated, lived in urban area and had better income. Conclusion: The results of study demonstrate that caring for family members with serious mental illness impacts the caregivers' wellbeing. It, therefore, highlights the need for support and counseling services for the caregivers to reduce the burden of caring.
There are currently very few studies exploring the area of mental health in the Philippines. The topic on mental illness remains widely stigmatized that even the concerns of the caregivers of the mentally ill stay unexplored on the background. This qualitative study aims to help families, mental health professionals, and the general community, understand the different coping and support needs of caregivers of the mentally ill. The researchers employed a phenomenological method of identifying the coping and support needs of these caregivers whose mentally ill family members were admitted in a Mental Health Facility in Leyte, Philippines. Data collection was made through in-depth interviews with carers/caregivers/relatives of five (5) mentally ill persons. Library and internet desk research in its related literature were also employed. Results of the study revealed two major themes, namely 1) coping strategies of caregivers of the mentally ill, and, 2) support to caregivers of the mentally ill. In the theme of coping strategies of caregivers of the mentally ill, three sub-themes emerged, namely 1.1) religious practice, 1.2) being productive, preoccupied and proactive, and 1.3) acceptance and resolve. Several support programs and services such as provision of mental health education and counseling regarding facts about the illness, its treatment and management, and leniency on watcher requirements during hospital admission are among the recommended support needs identified by the caregivers of the mentally ill.
Objective: to evaluate the relation between sociodemographics factors, stress and burden of care of family caregivers of patients at a psychiatric hospital admission.; Method: quantitative study, with a cross-sectional correlation design. A total of 112 family caregivers participated, older than 18, in a Brazilian psychiatric hospital. A sociodemographic questionnaire was used to collect data, the Zarit Burden Interview and LIPP Adult Stress Symptom Inventory.; Results: burden of care in family caregivers at a psychiatric hospital admission was significantly associated with stress (p=0.000). The psychological symptoms of stress predicted severe burden. Most caregivers presented a moderate or severe burden, with 52.7% in the resistance phase of stress; 66.1% presented psychological symptoms.; Conclusion: results show the alarming situation of caregivers of patients from a psychiatric hospital, evidencing their own vulnerability to illness. Indeed, the during admission in a psychiatric hospital, not only patients need care, but also their caregivers.
The aim of this article is to investigate the importance of family care in mental health and identify the shortcomings of the Spanish model of health care for the mentally ill. The empirical process comprised three qualitative procedures involving 37 experts from different regions of Spain. In order to guarantee the rigor of the data, a social worker discussion group was set up to create an interview script. Interviews were then carried out with 22 professionals who take care of people with mental illness in various public facilities throughout the country. A second focal group met three times to validate the categorizations analyzed in the interviews. The results of the empirical process indicate a need to remodel the mental health care system, which can be described with reference to five critical characteristics: 1) a lack of financial and human resources for mental health, 2) a lack of effective coordination among all the institutions and authorities involved, 3) a lack of quality resources aimed at rehabilitation and social reintegration as alternatives to institutionalization, 4) a lack of integrated care, and 5) a lack of a common healthcare framework for all professional workers in all the regions. A remodeling of the system is necessary to enable the rehabilitation, recovery, empowerment and development of people with SMD and thus ease the burden and improve the quality of life of family caregivers.
Background: Since the deinstitutionalization policy, in psychiatric hospitals, the care of patients with schizophrenia was left to their families which has been imposing a heavy burden on them. Family caregiver burden could have consequences for caregivers, patients, and the society. There is very little consensus on the definition and dimensions of the caregiver burden, which leads to a lack of consistency in the results of research. Thus, the present study was aimed to redefine the family caregiver burden of patients with schizophrenia. Methods: The databases PubMed, Scopus, Web of Science, MEDLINE (Via Ovid), ProQuest, SCI, Magiran, SID, and IranDoc will be searched from 1940 to 2018 using subject headings and appropriate terms in both Farsi and English languages. Also, gray literature and the reference list of included articles will be used to offer an appropriate definition of the family caregiver burden in patients with schizophrenia. Two independent reviewers will participate in study selection, data collection, and quality assessment steps. The result will be presented in tabular form, and meta-synthesis will be performed. Discussion: The result of this systematic review will help present the comprehensive definition of the family caregiver burden in patients with schizophrenia according to its evolutionary trend. Systematic review registration: PROSPERO CRD42018099372.
Background Little is known about the relationship between changes of family structure for people with severe mental illness (SMI) and treatment status of SMI during a period of sustained rapid socioeconomic development. This study aimed to explore the relationship between changes of family structure and treatment status of people with SMI in a 21-year longitudinal study in a rural area of China. Methods Epidemiological surveys of mental disorders were conducted in May, 1994, and October, 2015, in the same six townships (total population 170 174 in 2015) in Xinjin county, Chengdu, which is a representative middle-income rural county in southwest China. The six townships were randomly selected from all 12 townships of Xinjin county in 1994. The surveys consisted of two steps: (1) screening procedures for psychosis (face-to-face interviews with the head of each household together with key informant interviews), household by household; and (2) psychiatric interviews of people aged 15 years and older, to identify those with SMI (including schizophrenia, bipolar disorders, and major depressive disorder) according to the International Classification of Mental and Behavioural Disorders-10 (ICD-10) criteria. The two surveys were approved by the university human research ethics committees. Findings The number of people aged 15 years and older who were identified to have SMI was 711 and 1042 in 1994 and 2015, respectively. The mean number of family members was significantly lower in 2015 (3·0 [SD 1·5]) than in 1994 (3·4 [1·5], p<0·0001). Compared with people with SMI in 1994, those with SMI in 2015 had a significantly higher rate of living alone (13·7% vs 9·9%, p<0·013) and without caregivers (15·6% vs 8·4%, p<0·0001). There was a significantly lower rate of parents as caregivers in 2015 than in 1994 (13·5% vs 17·9%, p<0·011). The rate of low family economic status (less than the population mean) for people with SMI was significantly higher in 2015 than in 1994 (p<0·0001). Fewer family members (included in the same family hukou) was significantly associated with low family economic status (p=0·023), and low family economic status was significantly associated with poor treatment status (p=0·015). Interpretation The family structure and status of people with SMI has changed markedly during the rapid socioeconomic development from 1994 to 2015 in rural China. Fewer family members, fewer family caregivers and relative poverty have gradually become major challenges for families who care for people with SMI. How to improve care for people with SMI should be important if targets for Healthy China 2030 are to be met. Community mental health care, the precise poverty alleviation strategy, and the culture-specific family intervention programme should be crucial for comprehensive community mental health care and for improvement of the treatment and recovery of people with SMI in the community. Funding The survey in 1994 was supported in part by the China Medical Board of New York (92-557). The survey in 2015 was supported in part by the Seed Funding Programme for Basic Research (2014–2016), Seed Funding Programme for Applied Research (2014–2016), Contemporary China Strategic Research Theme (2014–2016), Small Project Funding (2014–2016), and Mental Health Research in Chengdu, China (department matching fund, 2015–2017).
Background: The purpose of the present study was to determine a statistically valid cutoff score for the Zarit Burden Interview (ZBI) in order to identify family caregivers at risk for depression and anxiety to guide for further assessment and future intervention. Methods: The ZBI, the Patient Health Questionnaire (PHQ), and the Generalized Anxiety Disorder Scale (GAD) were administered to a representative community sample of 327 family caregivers of schizophrenia individuals. A ZBI cutoff score was determined using three different statistical methods: tree-based modeling, K-means clustering technique and linear regression, followed by contingency analysis and receiver operating characteristic (ROC) curve to compare between depression and anxiety scale scores with the ZBI cutoff. Results: Findings suggest that a cutoff score of 48 in ZBI has significant predictive validity for identifying caregivers at risk for both depression and anxiety. A ZBI cutoff of 48 showed sensitivity of 73% for PHQ and 70% for GAD, specificity of 80% for PHQ and 79% for GAD, PPV (positive predictive value) of 75% for PHQ and 73% for GAD, NPV (negative predictive value) of 78% for PHQ and 76% for GAD. Conclusions: This cutoff score would enable health care providers to assess family caregivers at risk and provide necessary interventions to improve their quality of life in this important role.
In Portugal, a mental health reform process is in place aiming to redefine the model of service provision. In 2008, a National Mental Health Plan (NMHP) was approved to provide policy guidance over the transition period. The NMHP intended, among others, to develop community‐based services, with a specific focus on rehabilitation and deinstitutionalization. This study aims to explore the perspectives of service managers of psychosocial rehabilitation services regarding the main challenges to support the community living of persons with severe mental illnesses (PWSMI) in the Lisbon Metropolitan Area (LMA). The paper also contextualises the provision of psychosocial services within the country's mental health reform process and characterises the profile of service users in socio‐occupational units (SOUs) of the LMA. Semi‐structured interviews were performed with all SOUs’ managers of the LMA (n = 13). Information regarding service user characteristics was collected based on service records (n = 344). Interviews were analysed according to the framework methodology. The results of the interviews were triangulated using document analysis. Fieldwork took place between June and July 2016. The findings suggest that the development of the mental health reform ensured significant changes to service delivery. Community‐based mental health organisations are an important actor for service provision. However, important asymmetries were identified in the provision of psychosocial care within the LMA. At the same time, family carers are perceived as responsible for ensuring a large part of the social needs of the PWSMI but there is an increasing concern with their own ageing processes. As a conclusion, it is highlighted the current inequality between services and the need to contemplate a life‐course perspective that comprehends the ageing process of caregivers poses an emerging challenge for psychosocial rehabilitation. These findings are also important for other low‐ and middle‐income countries passing through similar reforms.
Background: Existing research suggests that eHealth interventions targeting family carers of individuals with long-term illness offer a promising approach to care delivery. In particular, digital psychoeducational interventions with interactive psychosocial support are well-received with high rates of satisfaction and acceptability. However, development of such interventions for psychosis carers is lacking. We developed a multi-component eHealth intervention specifically for carers of individuals affected by psychosis, called COPe-support (Carers fOr People with Psychosis e-support). Objective: Using mixed methods to evaluate usability, system heuristics and perceived acceptability, we conducted a usability study to establish the suitability of the intervention prototype for the target user group. Methods: Twenty-three carers were recruited to the study and participated in a think-aloud test or a remote online trial of the intervention. Qualitative feedback, post-use System Usability Scale (SUS) scores, and real-world usage data collected from the tests were analysed. These were also supplemented with heuristic evaluation data provided by an independent eLearning technology expert. Results: Participants evaluated the intervention content as useful and helpful, and indicated that the system had satisfactory usability with a mean SUS score of 73%, above the usability quality benchmark threshold. Study results identified some minor usability issues, which were corroborated with the eLearning expert’s heuristic evaluation findings. We used these results to refine the COPe-support intervention. Conclusions: The usability study with end-users and service providers identified real-life usage and usability issues. The study results helped us refine COPe-support and its delivery strategy before its launch as part of a large-scale clinical trial.
Purpose The purpose of this paper is to evaluate the effect of the planned pre-electroconvulsive therapy (ECT) family teaching on depression, anxiety and stress of caregivers of patients with mental disorders receiving ECT. Design/methodology/approach In this quasi-experimental study, 130 participants were randomized allocated into intervention or control groups. The planned family teaching program consisted of four 90 min sessions held during four weeks. Assessments occurred at pre-intervention (one week before the first session), and post-intervention (one months after the four session). Data were collected using demographic questionnaire and Depression, Anxiety and Stress Scale (DASS-21). Mean comparisons were performed using Student’s t-test while effect sizes were estimated by Cohen’s d coefficient. The significance level was considered less than 0.05. Findings The mean scores of the depression, anxiety and stress levels in the intervention group were significantly reduced compared to the control group (p=0.001). Originality/value The family pre-ECT teaching intervention and counseling decreased the depression, anxiety and stress level of family caregivers of patients with mental disorders receiving ECT and the maintenance of other favorable conditions at baseline. These results suggest that even a short-term educational intervention for family members of patients received ECT can improve emotional outcomes of treatment in the family.
PURPOSE OF REVIEW: To review the evolution of family support movement for schizophrenia in India and to report perspectives of family caregivers who are running family support groups across the country in the backdrop of recent legislations in India. RECENT FINDINGS: Family support movement started in the 1990s, mostly by family caregivers independently in multiple cities across the country. Apart from periodic support meetings, they have successfully influenced recent legislations to address the felt needs of families. Mental health professionals need to gain skills to work collaboratively with assertive family caregivers to develop services to support those diagnosed with mental illness. Though there is a need for such movement, funding is poor and very few caregivers of persons with schizophrenia are forthcoming to participate. The formation of national federation with government and non-government partnership could help give the required impetus to the family support movement for persons with schizophrenia in India.
Caregiving experiences matter for caregivers’ own wellbeing, but few studies link caregivers’ burden and benefit perceptions with recipient outcomes. Following the stress process model, I prospectively explore how caregivers’ experiences shape recipients’ mental health. I match US National Health and Aging Trends Study and National Study of Caregivers, employing logistic regression on 781 older adult-informal caregiver dyads. I examine how caregivers’ appraisals shape recipients’ subsequent depression and anxiety, with caregiver mental health and recipient unmet care need as key covariates. Recipients receiving care from caregivers reporting predominantly benefits are less likely to become depressed than counterparts receiving care from persons reporting predominantly burden. Recipients receiving care from persons reporting benefits even alongside low or moderate burden are also less likely to become anxious. Recipient unmet care need, but not caregiver mental health, is associated with recipient mental health. Improving caregiver conditions may have benefits for both dyad members.
Background: Improving patients’ perception of social support is significant not only for their re-adaptation to life but also for alleviating caregivers’ burden. Aim: This study aims to examine an integrated model regarding social support, psychotic symptoms and caregiver burden. Methods: Persons with schizophrenia (N1 = 300) and their family caregivers (N2 = 300) in Xinjin County, Chengdu, China, completed the survey to report their demographics, patients’ perception of social support (Duke Social Support Index), psychotic symptoms (Positive and Negative Syndrome Scale) and caregiver burden (Burden Scale for Family Caregivers, Short Version). Structural equation modelling was utilised to test the proposed model. Results: The degree of caregiver burden differed significantly within subgroups of patients’ gender and education, as well as caregivers’ gender, education and employment. Caregiver burden was negatively related to patients’ age and household income. Social interaction partially mediated the relationship between instrumental and subjective social support (total effect = 0.451, p <.01). Subjective social support fully mediated the impact of social interaction on psychotic symptoms (total effect = −0.099, p <.05). In the final model, instrumental social support was positively associated with social interaction (p <.001) and increased subjective social support (p <.05). Increased subjective social support showed correlation with a lower degree of psychotic symptoms (p <.01), which was related to a lower level of caregiver burden (p <.001). Conclusion: This study shows the associations of patients’ social support with psychotic symptoms and caregiver burden. Culture-specific psychosocial interventions should be provided for both patients and caregivers to enrich external support and reduce psychotic symptoms and caregivers’ burden within the health care environment.
Background: Little is known about the impacts of schizophrenia on different types of caregiving burden. Aim: This study aims to examine how the severity of schizophrenia, social functioning and aggressive behavior are associated with caregiving burden across different kinship types. Method: The analytic sample included 300 dyads of persons with schizophrenia and their family caregivers in Xinjin, Chengdu, China. The 10th edition of the International Classification of Diseases (ICD-10) was utilized to identify the patients, whose symptom severity, social functioning and aggressive behavior were measured. Caregiving burden was estimated using the Burden Scale for Family Caregivers–short (BSFC-s). Results: A higher level of burden was significantly associated with female caregivers, larger family size, lower income, worse symptoms, poorer functional status and more aggressive behaviors. Parent caregivers showed greater burden if the patients had better functioning of social interest and concern or more aggression toward property. Mother caregivers showed greater burden than fathers. Spouses tended to perceive greater burden if the patients had better marital functioning, poorer occupational functioning or more aggressive behaviors toward property. Patients attacking others or a father with schizophrenia was related to a higher burden of child caregivers. A heavier burden of other relatives was correlated with patients’ more verbal aggression and self-harm. Conclusion: This study shows the distinct impacts of disease-related factors on the caregiving burden across different kinship types. Our findings have implications for health-care professionals and practitioners in terms of developing more targeted family-based or individualized intervention to ameliorate burden according to kinship types and deal with behavioral and functional problems in schizophrenia.
(1) Background: The aim of this research was to analyze factors associated with quality of life (QoL) and marital satisfaction in married family caregivers of patients with mental disorders. (2) Methods: A cross-sectional study was conducted in all community mental health services in Goiania municipality, Brazil, in 2016–2017. Married family caregivers of patients with severe and persistent mental disorders were recruited and their QoL and marital satisfaction was assessed by using the World Health Organization Quality of Life Instrument Abbreviated version (WHOQOL-BREF) and Marital Satisfaction Scale. Multiple linear regressions were performed to identify factors associated with QoL and marital satisfaction. (3) Results: For 163 family caregivers, the psychological and environmental QoL domains presented the best and the worst scores, respectively. Factors independently associated with better QoL for caregivers were male caregiver, the younger age of a caregiver, >8 years of schooling, ≥5 years as a caregiver who performed physical activities, caregiver without chronic disease, and no patient’s crisis in the last 30 days. Factors independently associated with marital satisfaction of the caregiver were male caregiver, caregiver with >8 years of schooling, caregiver who received support by relatives to care for the patient, caregiver who performed physical activities, no patient’s crisis in the last 30 days, and patient hospitalization in the last six months; (4) Conclusions: The main predictor for marital satisfaction was support by relatives, and for QoL it was no patient’s crisis in the last 30 days.
Background: Understanding the explanatory models of family caregivers is particularly important in interdependent contexts like India, where they often play a significant role in the help-seeking behaviours, treatment decision-making and long-term care of those diagnosed with mental illness. Aims: This study was planned to explore the diversity of explanatory models among family caregivers at a centre for recovery-oriented rehabilitation services in South India. Methods: The sample for this study included 60 family caregivers of patients referred to Psychiatric Rehabilitation Services within a tertiary-care hospital for mental health and neurosciences. Bart’s Explanatory Model Inventory, including a semi-structured interview and a checklist, assessed the family caregivers’ explanatory model of distress on five domains: identity, cause, timeline, consequences and control/cure/treatment. Results: The results indicated the coexistence of multiple causal explanatory models including psychosocial, supernatural, situational and behavioural contributors. While 36.7% of the caregivers displayed two explanatory models, 33.3% of the caregivers held three explanatory models and 16.6% of the caregivers endorsed four explanatory models. Caregivers shared their concerns about varied consequences of mental illness but less than half of them were aware of the name of the psychiatric disorder. While they accessed various forms of treatments and adjunctive supports such as prayer, medication was the most frequently used treatment method. Conclusions: The findings have implications for collaborative goal setting in recovery-oriented services for persons with mental illness and their families.
Background: Changes in the demographics and respective growth of life expectancy and social needs make informal caregiving crucial component of comprehensive health and social care network, which substantially contributes to the health and well-being of the elderly. The purpose of this paper is to understand the system of care of elderly patients with mental disorders from the perspective of informal caregivers in Lithuania. Methods: We conducted five semi-structured focus group discussions with 31 informal caregivers attending to elderly patients with mental disorders. The data were audiotaped and transcribed verbatim. A thematic analysis was subsequently performed. Results: Five thematic categories were established: (1) the current state of care-receivers: Representation of the complexity of patients' physical and mental condition. (2) The current state of caregivers: Lack of formal caregivers' integration as a team; inadequate formal involvement of informal caregivers. (3) Basic care needs: The reflection of the group needs relating directly to the patient, care organisation and the caretaker. (4) The (non-) Readiness of the existing system to respond to the needs for care: Long-term care reliance on institutional services, lack of distinction between acute/immediate care and nursing, lack of integration between the medical sector and the social care sector. (5) Potential trends for further improvement of long-term care for the elderly with mental disorders. Conclusions: Strengthening of the care network for elderly patients with mental disorders should cover more than a personalised and comprehensive assessment of the needs of patients and their caregivers. Comprehensive approaches, such as formalization of informal caregivers' role in the patient care management and planning, a more extensive range of available services and programs supported by diverse sources of funding, systemic developments and better integration of health and social care systems are essential for making the system of care more balanced.
Purpose of review To better understand the overall burden of schizophrenia, we aimed to explore informal caregivers' experiences by evaluating the current evidence on caregiver and patient characteristics, the type of care provided by caregivers, and the impacts of caregiving on caregivers' lives. Recent findings Caregivers provide direct care, assistance with activities of daily living, and emotional, social, and financial support to individuals with schizophrenia. Increased duration of illness and of care, severe or persistent schizophrenia symptoms, criticism of the care recipient, financial burden, and patient disability intensify caregiver burden. Caregivers of individuals with persistent symptoms often feel overwhelmed, stressed, drained, burdened, frustrated, or angry. Financial impacts of caregiving include treatment costs for care recipients, providing financial support, and lost productivity and income. Depression and anxiety are common health impacts for caregivers, who also have increased physical healthcare resource use relative to healthy controls. Caregiver burden is reduced by formal support programs to improve caregivers' stress management and coping skills and informal sources of social support. Summary Targeted efforts to improve access to care and provide additional support for caregivers are needed to alleviate caregiver burden and improve outcomes for individuals with schizophrenia.
Background: Involving carers is a key priority in mental health services. Carers report the sharing of service users’ safety information by mental health nurses is problematic and seldom takes place. Aims: The impact of an intervention on consensus between nurses and carers on perceptions of risk was investigated. Methods: Carer–nurse risk consensus scores were measured pre- and post-introduction of a structured dialogue (paired t-test/ANOVA). Carer experience with involvement was surveyed pre-test (n = 60) and compared with the post-test intervention group (n = 32) (chi-square tests of linear-by-linear association). Results: Consensus and perceptions regarding type and severity of risk did not change significantly for carers or nurses after engaging in a structured dialogue. Statistically significant differences were found with carers reporting higher levels of satisfaction with services in four out of six areas surveyed. Conclusions: Findings provide support for increasing carer contribution to discussions regarding risk. Further work to embed carer involvement in clinical practice is warranted.
Patient involvement (shared decision making ) and caregiver involvement (family involvement, etc.) are mostly seen as different aspects of care, and efforts to integrate them are limited. This Open Forum posits that both approaches are critical and that caregiver involvement should always be considered during shared decision making, potentially as an integral component. The authors argue that the two approaches can overlap and work synergistically rather than antagonistically. When caregiver involvement is integrated into shared decision making, caregivers may assume any of a variety of roles and need to develop certain competencies to better engage in decision making.
AimTo co‐produce consensus on the key issues important in educating mental health‐care professionals to optimize mental health medication adherence in Black, Asian and Minority Ethnic (BAME) groups. Objectives To identify perceptions of factors enabling or disabling medication adherence. To achieve consensus on content and delivery of an educational intervention for mental health‐care professionals. Methods Data were collected from 2016 to 2018. Using individual interviews and a consensus workshop with carers and service users (SUs treated under the 1983 Mental Health Act 1983/revised 2007 for England and Wales), the experience of taking prescribed mental health medication and perspectives on adherence were explored. Data were analysed using 2‐stage qualitative coding via the software tool NVivo version 11 to analyse transcribed data and to produce the main explanatory categories. Results SU and carer participants' perspectives substantially altered the original research design. The need to educate students rather than trained professionals was emphasized, and they suggested that educational content should be packaged in a contemporary manner (a virtual reality experience). Findings indicated that education should focus upon understanding the impact of taking prescribed antipsychotic medication on both SUs and carers. Discussion The importance of effective communication between health professionals, SUs and carers and a willingness to learn about and appreciate how BAME culture influences perception of mental illness and mental well‐being were highlighted. Conclusion In working co‐productively, researchers need to be flexible and adaptable to change.
People, who assist patients with chronic health problems for work, voluntary or for family reasons, may be affected by burnout. This is defined as an excessive reaction to stress caused by one's environment that may be characterized by feelings of emotional and physical exhaustion, coupled with a sense of frustration and failure. A person who assists a suffering person, beyond the professional role, is indicated generally by the term "caregiver". The definition of Burnout in families is fairly recent, because the psychology of trauma has ignored a large segment of traumatized and disabled subjects (family and other assistants of "suffering people") unwittingly, for a long time. The burnout of secondary stress is due to one's empathic ability, actions trough disengagement, and a sense of satisfaction from helping to relieve suffering. Figley (1995) claims that being a member of a family or other type of intimate or bonded interpersonal relationship, one feels the others' pain. Closely associated with the suffering of the family caregiver is the concept of compassion fatigue, defined as a state of exhaustion and disfunction-biologically, psychologically, and socially - as a result of prolonged exposure to compassion stress and all that it evokes. In families, this can be the cause of serious conflicts and problems, quarrels, verbal and physical aggression, and broken relationships. The intervention on families requires practice and effectiveness approaches performed by experienced professionals. Some approaches focus more specifically, such as those that adopt a cognitive/behavioural technique with direct exposure, implosion methods, various drug treatments and family group psychotherapy. One of the most common models of intervention is based on the principle that the observation unit for the understanding of the disorder is not the single individual but the relationship between individuals.
Background: Family carers provide significant support to people with a mental illness; yet may experience poor mental and physical health themselves. Among limited research addressing the physical health of carers, studies of carers of people with dementia and young people with psychosis suggest increased risk of chronic diseases in conjunction with higher levels of potentially modifiable lifestyle risk behaviours. This exploratory study, conducted with carers of people with various mental illnesses, aimed to determine: carer prevalence of health risk behaviours (inadequate fruit and vegetable consumption, inadequate physical activity, harmful alcohol consumption, and tobacco smoking); interest in changing 'at risk' behaviours; and potential associations of socio-demographic characteristics with risk status and interest in change. Methods: A cross-sectional survey was conducted among family carers of people with a mental illness (N = 144) residing in New South Wales, Australia. Analyses explored risk behaviour prevalence and interest in change, and associations with socio-demographic variables. Results: Inadequate fruit and vegetable consumption was most prevalent (74.8%), followed by engaging in inadequate amounts of physical activity (57.6%); harmful alcohol consumption (36.3%) and smoking (11.8%). The majority of carers were interested in improving 'at risk' behaviours (56.3-89.2%), with the exception of alcohol consumption (41.5%). Previously or never married participants were more likely to consume inadequate amounts of fruits and/or vegetables compared to those married or cohabiting (Odds Ratio [OR]: 4.1, 95% Confidence Interval [CI]: 1.3-12.9, p =.02). Carers in the workforce were more likely to be engaging in inadequate physical activity (OR: 2.6, 95% CI: 1.2-5.7, p =.02); and male participants were more likely to engage in harmful alcohol consumption (OR: 2.9, 95% CI: 1.1-7.9, p =.03). Working carers were approximately five times more likely to report interest in improving their alcohol consumption (OR: 5.1, 95% CI: 1.3-20.5, p =.02) compared to those not currently in the workforce. Conclusions: Results suggest high engagement in health risk behaviours among carers of people with a mental illness, particularly with regards to harmful alcohol consumption. Findings suggest a need to develop and implement chronic disease prevention strategies. Further research with larger representative samples is needed to confirm findings.
Families are considered as primary sources of care for individuals suffering from mental disorders. However, one of the major stresses in families is the infliction of a family member with mental illnesses causing dysfunction in health dimensions or generally their quality of life. Currently, most experts believe that religion can affect physical health and other aspects of human life. So, the aim of this study was to investigate “the relationship between care burden and religious beliefs among family caregivers of mentally ill patients.” This cross-sectional study was carried out in Iran on 152 families with mentally ill patients who were hospitalized in psychiatric wards. The sampling method was nonprobability and consecutive sampling method. The data collection instruments included a demographic characteristic questionnaire, Religious Beliefs, and Zarit Care Burden Questionnaires. The mean score for care burden was 30.99 (SD = 16.45). 5.9% of the participants reported a low level, and 39.5% experienced a moderate level of care burden. Moreover, the mean score for religious beliefs was 115.5 (SD = 13.49), and majority of the participants (70.4%) were endowed with strong religious beliefs. There were no significant associations between care burden and intensity of religious beliefs among the study samples (P = 0.483). Considering the results of this study indicating experience of moderate-to-high levels of care burden in families with mentally ill patients, it is recommended to consider such families and their religious beliefs as contributing factors in coping with challenges of mental disorders.
Depression is one of the most common psychological consequences of caregiving. Caring for patients with severe mental illness (SMI) adds significant challenges to family caregivers' mental health. The purpose of this study was to describe the prevalence of depression among caregivers of SMI patients in rural areas of Sichuan province of China, to examine the influence of social support and care burden on depression, and to explore the intermediary effect of care burden between social support and depression among caregivers of SMI patients. Data were collected from 256 primary caregivers of SMI patients in rural Sichuan Province in China. We used structural equation modeling (SEM) to test the hypothesized relationship among the variables. We found that a total of 53.5% of caregivers had depression. Both care burden (β = 0.599, 95%CI: 0.392-0.776) and social support (β = -0.307, 95%CI: (-0.494)-(-0.115)) were directly related to depression, while social support had a direct association with care burden (β = -0.506, 95%CI: (-0.672)-(-0.341)). Care burden mediated the relationship between social support and depression. For the socio-demographic variables, gender, education level and per capita annual income of household had significant correlations with depression (p < 0.05). The results strongly demonstrated that social support and care burden were predictors of depression, especially social support. Policymakers should fully recognize the role of primary family caregivers in caring for SMI patients and promote interventions to decrease care burden and reduce caregivers' depression by improving social support and network. More attention should be given to female caregivers and caregivers with lower education and lower household income levels.
Purpose: The present study examined the degree to which loneliness mediated the influence of negative (social constraints) and positive (emotional support) relationship qualities on the global mental health of advanced gastrointestinal (GI) cancer patients and their family caregivers. Methods: Fifty patient-caregiver dyads completed measures assessing social constraints (e.g., avoidance, criticism) from the other dyad members, emotional support from others, loneliness, and global mental health. Structural equation modeling was used to examine individual models, and Actor-Partner Interdependence Mediation Modeling was used to examine dyadic associations. Results: Individual path analyses for patients and caregivers demonstrated that emotional support had a significant indirect effect on mental health through loneliness (Bs = 0.32 and 0.30, respectively), but no associations were found between social constraints and mental health. In dyadic analyses, participants' loneliness and mental health were not significantly related to their partner's emotional support, loneliness, or mental health (Bs = - 0.18 to 0.18). Conclusions: Findings suggest that for advanced GI cancer patients and caregivers, emotional support from others alleviates feelings of loneliness, which may lead to better mental health. However, the benefits of emotional support appear to be primarily intrapersonal rather than interpersonal in nature. Additionally, participants endorsed low levels of social constraints, which might explain their lack of relation to loneliness and mental health. Continued examination of interdependence in social processes between cancer patients and caregivers will inform intervention development.
Background Providing unpaid support to family and friends with disabling health conditions can limit a carer’s capacity to participate in employment. The emotional support needs and unpredictability of caring for people with mental illness may be particularly demanding. While previous research suggests variable employment rates across carers for different conditions, there are limited data on mental health carers specifically. Methods This study analysed employment patterns for working-age, co-resident carers of adults with mental illness in an Australian cross-sectional household survey, the 2015 Survey of Disability, Ageing and Carers. Results Significantly more mental health carers were not employed (42.3%, 95% CI: 36.6–48.1) compared to non-carers (24.0%, 95% CI: 23.5–24.6). Employed mental health carers were more likely to work fewer than 16 h per week (carers: 17.2%, 95% CI: 12.8–22.8, vs. non-carers: 11.7%, 95% CI: 11.3–12.1) and in lower skilled occupations (carers: 22.6, 95% CI: 17.5–28.7, vs. non-carers: 15.7, 95% CI: 15.1–16.2). Among the sub-group of primary mental health carers, 25.8% (95% CI: 15.6–39.5) had reduced their working hours to care and a further 26.4% (95% CI: 17.2–38.2) stopped working altogether. In corresponding comparisons between mental health carers and carers for people with other cognitive/behavioural conditions, and physical conditions with or without secondary mental illness, there were no differences except that mental health carers were more likely to be working in a lower skilled occupation than other cognitive/behavioural condition carers (14.8% of the latter, 95% CI 10.1–21.2). Multivariate logistic regression analyses revealed that female mental health carers were less likely to be employed if they were aged 35–54, had no post-secondary education, had a disability, or cared for someone with severe activity limitations. For male mental health carers, having a disability or caring for someone with severe limitations or who did not receive paid assistance were significantly associated with not being employed. Conclusions These results highlight the employment disadvantage experienced by mental health carers compared to non-carers, and similarities in employment patterns across carers for different conditions. Improving the availability of paid support services for people with mental illness may be an important target to assist carers to maintain their own employment.
Australia is a multicultural country and it is common for families from culturally and linguistically diverse (CALD) communities to care for their relatives with mental illness. However, there are limited Australian studies examining the experiences of informal carers of people with mental illness from CALD communities. A scoping review was conducted to search for peer-reviewed articles reporting the perception of carers regarding their caregiving experiences, wellbeing, and needs. Using cultural responsiveness as a conceptual framework, this study analysed the findings of the identified studies to generate themes. Findings show that carers experience severe caregiving challenges and face considerably poor culturally oriented services in mental health. Social work implications concerning the need to provide culturally responsive practice in mental health services are discussed. Carers from culturally and linguistically diverse communities experience considerably poorer culturally oriented practices in mental health services. Cultural responsiveness is a relevant framework for social work practice with carers and their relatives with mental illness who are from culturally and linguistically diverse communities.
Despite widespread recognition of the usefulness of a biopsychosocial approach in social work, there are limited studies exploring how social workers can use this approach to support the health and wellbeing of carers of young people with first episode psychosis (FEP). Validated questionnaires and anthropometric measures were used to assess the physical health and wellbeing of 42 carers of young people with FEP. Carers had moderate levels of negative caregiving consequences, quality of life, and health status. More than half (52.4%) of carers were experiencing social isolation. Many carers were overweight (78.6%), had a high risk for type 2 diabetes (39.0%), and had hypertension (33.3%). Practical implications of a biopsychosocial approach to social work that supports both clients and their carers are discussed. Social workers can better utilise the biopsychosocial approach in working with young people with first episode psychosis and their carers. Holistic care using a biopsychosocial approach should support individuals and their families in both physical and mental health. Social workers can further support the health and wellbeing of carers by collaborating with medical and other allied health colleagues within multidisciplinary teams, and by referring carers with physical health problems to general practitioners.
Objectives: To explore Australian mental health carers' prioritisation of key elements of caregiving and establish the extent to which particular issues contribute to carer burden.; Design: Cross-sectional survey.; Setting: All Australian States and Territories.; Participants: Responses were received from 231 Australian mental health caregivers.; Main Outcome Measures: The Involvement Evaluation Questionnaire was used to assess caregiver burden.; Results: Smallest space analysis identified three distinct regions, which we conceptualise as: 1) promoting the safety and health of mental health consumers; 2) impact of caring on caregivers' personal lives and 3) enabling daily living functional recovery of mental health consumers. The analysis demonstrates that carers are most concerned with enabling daily living functional recovery, for which the mean value was considerably higher than the personal impact and promoting safety and health regions. In terms of the individual questionnaire items, the issues of most importance are assisting with self-care, worrying about consumers' future, finances and general health, encouraging consumer involvement in activities and concerns over the treatment consumers are receiving.; Conclusion: Caregiving often came at significant personal cost. The burden that results from caring for mental health consumers could perhaps be alleviated through the expansion of psychiatric disability services, increasing government financial support and providing tailored psychosocial interventions that meet the needs of families.
Objective: To determine if family caregiver involvement in interventions with patients with delirium improves patient outcomes.; Methods: A search of three databases (Medline-Ovid, CINAHL and Embase) was conducted. Eligibility criteria included adult patients and involvement of family caregivers in any delirium intervention. Data were extracted from each study (determined by PEDro scale) using a customised form. A meta-analysis was undertaken which compared the length of hospital stay and duration of delirium. PROSPERO registration number is CRD42017077650.; Results: Five studies involving 505 participants published over a 5-year period were suitable for inclusion. Low-level evidence demonstrated family caregiver involvement may reduce caregiver's anxiety and hospital staff viewed administration of education to family caregivers as efficient. Meta-analysis suggested family interventions reduce length of hospital stay for patients with delirium. It remains unclear if it affects the duration of delirium.; Conclusion: Family caregivers providing interventions to patients with delirium can improve patient outcomes.
Aim: Brief psychoeducation for families of psychotic patients has been shown to significantly increase family members' knowledge of the disorder. This increase is associated with reductions in relapse and rehospitalization. The aim of this study was to assess the effectiveness of brief psychoeducation about schizophrenia to caregivers of patients in early phases of psychotic disorders in Yogyakarta, Indonesia.; Methods: This study was a prospective, randomized trial with 2 parallel groups. Subjects were patients in the early phase of psychotic disorders and their respective caregivers. Inclusion criteria included a diagnosis of acute and transient psychotic disorders, schizophrenia, schizoaffective disorder or delusional disorder. Participants were randomly assigned to either control or intervention groups by means of paired simple randomization. A brief psychoeducation was conducted for both the patients and caregivers. The interventions were conducted in 4 interactive sessions, once per week. Effectiveness was measured using standardized instruments before the intervention, and at 1 and 6 months post-intervention. Assessment instruments included the Knowledge of Psychosis (KOP), the Compliance and Relapse Assessment, the Brief Psychiatric Rating Scale and the Positive and Negative Symptoms of Schizophrenia scale.; Results: Interventions improved KOP scores significantly in the intervention group. The intervention group had increased regularity of follow-up with health providers and improved compliance. No statistically significant difference in relapses/rehospitalization was observed.; Conclusions: This study demonstrated that brief psychoeducation with caregivers of patients with early phase psychosis was feasible in our setting, significantly improved caregivers' knowledge, and resulted in improved regularity of contact with health providers and compliance with pharmacotherapy.
Purpose: To explore the experience of caregivers of family members with schizophrenia.; Design and Methods: A qualitative approach was adopted to examine the experience of caregivers of people with schizophrenia. The researcher conducted semi-structured interviews with 16 participants recruited through purposive sampling.; Findings: The change findings encompassed five major themes: (a) loss of personal life, (b) mixed emotions, (c) changes in family relationships, (d) the need for professional support and help, and (e) coping strategies.; Practice Implications: Clinicians, including nurses, must be aware of the cultural importance of mental illness, particularly the widespread cultural beliefs and patterns of help-seeking behaviors, to provide culturally sensitive health care and develop empirical strategies for helping both these caregivers and their dependents.
Family caregivers of people with substance abuse are exposed to psychological problems that diminish their life quality and satisfaction. The purpose of this study was to diagnose the efficacy of quality-of-life intervention on stress and life satisfaction of family caregivers of individuals with substance use problem. This is a randomized controlled trial conducted on 80 family caregivers of individuals with substance use problem in the process of withdrawal who were referred to a psychiatric center in southeastern Iran (2018). The intervention group received seven sessions of quality-of-life group counseling every other day based on predetermined content. Twelve weeks post-intervention, data were collected from the control and intervention groups using the Depression Anxiety and Stress Scales (DASS-21) and the Satisfaction with Life Scale (SWLS). The results were analyzed through statistical tests. After group counseling based on quality of life, the mean stress score in the family caregivers of the intervention group (11.50 ± 4.36) was significantly lower than in those of the control group (14.67 ± 4.93) (p = 0.003). Also, in the posttest, the mean score of life satisfaction in the intervention group (24.75 ± 4.28) was significantly higher than that of the control group (19.57 ± 7.33) (p = 0.001). Group counseling based on quality of life exerted a significantly positive impact on reducing the severity of stress and improving life satisfaction among family caregivers of individuals with substance use problem. Therefore, it is highly recommended that healthcare service providers incorporate this counseling approach in substance use withdrawal programs so as to increase the well-being and mental health of family caregivers.
Background and objectives: Severe mental disorders require informal care, usually provided by family members of the affected. The aim of the study is to examine the burden of informal caregiving for individuals with schizophrenia and affective disorders prior to hospital admission in Bulgaria. Methods: The study has an observational, cross-sectional, retrospective design. Individuals with schizophrenia and affective disorders and their caregivers are evaluated upon the patients’ admission for inpatient treatment. The objective and subjective consequences of providing informal care are evaluated with the Burden Assessment Scale (BAS) as a primary outcome measure. Its factor structure and determinants of high burden of care are examined. Results: 117 individuals with mental disorder and 117 caregivers are evaluated, dichotomized in two groups according to the patient's diagnosis. The time spent in informal care is 5.7 hours per day (SD = 2.9) for schizophrenia and 3.9 hours per day (SD = 3.0) for affective disorders, p =.002. The mean score on the BAS is 44.7 (SD = 11.0) and 42.0 (SD = 12.8) respectively, p =.221. A common pattern of the burden with a 5-factor solution explaining 66% of the variance is presented, including the factors Limitations, Conflicts, Guilt, Trap, and Stigma. Contributors for the increase in the BAS are stigma (p <.001), history of threats (p =.014), supervision for disturbing behaviour (p <.048), younger age of the caregivers (p =.043), spouses/partners to the patients (p <.001), less social contacts (p =.017) and provision of informal care on a daily basis (p =.027). Conclusions: The caregivers of individuals with schizophrenia and affective disorders experience considerable objective and subjective burden.
Aims and Objectives: This study aimed to analyse the prevalence and factors associated with suicidal ideation among family caregivers of people with mental disorders.; Background: Studies conducted with family caregivers of people with dementia and cancer point out a high prevalence of suicidal ideation among these subjects; however, this aspect has not yet been investigated among family caregivers of people with mental disorders.; Design: This is a cross-sectional study, conducted with 537 family caregivers of patients from 16 Psychosocial Care Centers (CAPS) of the 21st Health Region of the state of Rio Grande do Sul, Brazil.; Methods: Question 17 of the Self-Reporting Questionnaire (SRQ-20) was used for suicidal ideation screening. The prevalence of suicidal ideation was calculated according to sociodemographic and care variables, with confidence interval estimate (95% CI). Crude and adjusted odds ratios were calculated by logistic regression. The Guidelines to Reporting of Observational Studies in Epidemiology (STROBE Statement) was adhered in this study (See File S1).; Results: The prevalence of suicidal ideation found in this study for the 30 days preceding the interview was 12.5% (95% CI: 10-15). The factors associated with the outcome were lower age, lower schooling, feeling of burden, self-report of stress problem and dissatisfaction with family relationships.; Conclusion: The prevalence of suicidal ideation among the studied family caregivers was high and strongly associated with issues regarding care, showing the need for interventions that provide support.; Relevance For Clinical Practice: Nurses are a large part of the workforce of the community mental health services. The careful characterisation of the subjects who show suicidal ideation, as performed in this study, may reveal specificities capable of refining the diagnostic potential for establishment of action plans in a timely manner, avoiding possible attempts or even the consummation of suicide.
Introduction. Informal Primary Caregivers (IPC) of people with borderline personality disorder (BPD) experience a significant burden, making it important to determine their specific needs. Objectives. Cross-sectional study aimed at adapting and establishing the reliability of the Questionnaire on the Needs of Family Members of People with Severe Mental Disorders to identify felt and unfelt needs that may or may not have been met in IPCs of patients with BPD and suggest intervention strategies to effectively address them. Method. The adapted version of the instrument was completed by 80 IPCs of patients with confirmed BPD diagnosis. Results. Cronbach’s alpha coefficients for different groups of needs evaluated through the instrument were: Knowledge/information = .77, Instrumental support = . 78, Participation = .63, and Personal support = .74; and for the total score = .86. The most important unmet felt needs were: 1. having information on interventions for patients and caregivers, legal and administrative aspects, and available support services; 2. having coping skills to deal with crises and manage patients’ risk behaviors; 3. receiving professional care to reduce stress; and 4. being listened by health professionals, express their personal opinions, and need for rest. Conclusions. The adapted instrument showed satisfactory internal consistency in IPCs of patients with BPD. The results highlight the urgent need for interventions for this population, focusing on psychoeducation, assertiveness training, stress management, and problem solving.
Approximately 5% of the UK population live with serious mental health problems. Data show that informal caregivers of people with mental illness provide care for the highest number of hours compared to other illness and the economic cost of this care is highest in the UK when compared internationally. People living with serious mental health problems make transitions between different intensities of service as their needs fluctuate, including referral, admission, transfer or discharge. Although caregiving is associated with both stress and positive reward, service transitions are particularly associated with increased stress. This review aimed to investigate what is known about the experiences of informal caregivers during mental health service transitions. An integrative qualitative synthesis was conducted following searches in six bibliographic databases and of the grey literature. Studies published in English between 2001 and 2017 were included if the study focus was on serious mental health problems, the experiences of caregivers and service transitions. Eleven studies were included, appraised using the Mixed Methods Appraisal Tool and synthesised, resulting in four themes: (a) Caregiver information, (b) Caregiver involvement in decisions about care and treatment, (c) Accessing services, (d) Being a caregiver. Caregivers' experiences were similar during transitions to their usual caregiving role but they faced more challenges and their experiences were amplified. Concerns about confidentiality created barriers to information sharing. Continuity of professionals across transitions was helpful. Caregivers struggled to deal with their own conflicting emotions and with the behaviours of the person yet rarely received help. The review findings point to a need for continuity of professionals across service transitions, co-designed and delivered training for professionals and caregivers about information sharing, greater understanding of barriers to implementation of family interventions and interventions that address emotional needs of caregivers.
Background: The aim of the present study is to analyse the variables associated with the family care of people diagnosed with serious mental illness.; Material and Methods: A cross-sectional study was carried out involving caregivers of people with serious mental illness (SMI) who were known to the mental health services in Valencia (España) and associations for those with SMI. The sample comprised 417 caregivers who completed a sociodemographic questionnaire and the Zarit Burden Interview. Bivariate analyses (t-test, analysis of variance and Pearson correlation) were performed, as was a multiple linear regression model. Values of p < .05 were considered significant. The study was carried out in accordance with the recommendations of the ethics committees of the participating institutions.; Results: The statistical analyses showed significant associations between the sociodemographic and clinical variables of the caregivers and patients and the burden felt by caregivers of people with SMI. The importance of both formal and informal social support stands out as a protective factor against the consequences of the illness's impact on the main caregiver.; Conclusions: The role of spaces of mutual support is crucial. The results suggest that family psychoeducational programmes should be created, applied and evaluated in all mental healthcare services so as to reinforce training in mental health matters and provide support and assessment to caregivers in order to ease their burden.
This paper presents findings from an interdisciplinary project undertaken in Victoria, Australia, investigating the barriers and facilitators to supported decision-making (SDM) for people living with diagnoses including schizophrenia, psychosis, bipolar disorder, and severe depression; family members supporting them; and mental health practitioners, including psychiatrists. We considered how SDM can be used to align Australian laws and practice with international human rights obligations. The project examined the experiences, views, and preferences of consumers of mental health services, including people with experiences of being on Community Treatment Orders (CTOs), in relation to enabling SDM in mental health service delivery. It also examined the perspectives of informal family members or carers and mental health practitioners. Victoria currently has high rates of use of CTOs, and the emphasis on SDM in the Mental Health Act, 2014, is proposed as one method for reducing coercion within the mental health system and working towards more recovery-oriented practice. Our findings cautiously suggest that SDM may contribute to reducing the use of CTOs, encouraging less use of coercive practices, and improving the experience of people who are subject to these orders, through greater respect for their views and preferences. Nonetheless, the participants in our study expressed an often ambivalent stance towards CTOs. In particular, the emphasis on medication as the primary treatment option and the limited communication about distressing side effects, alongside lack of choice of medication, was a primary source of concern. Fears, particularly among staff, about the risk of harm to self and others, and stigma attached to complex mental health conditions experienced by consumers and their families, represent important overarching concerns in the implementation of CTOs. Supporting the decision-making of people on CTOs, respecting their views and preferences about treatment, and moving towards reducing the use of CTOs require system-wide transformation and a significant shift in values and practice across mental health service delivery.
Background: Burden of caregivers of people with mental illness (PWMI) is considered to be a negative impact of the care provided by the family to the patient. However, little is known about the extent of the burden among caregivers of PWMI in Ethiopia. The aim of this study, therefore, is to assess the magnitude and associated factors of burden among caregivers of PWMI at Jimma University Medical Center, 2017.; Methods: Institution-based cross-sectional study design was employed among 406 conveniently selected caregivers of PWMI and interviewed using a structured questionnaire. Family burden interview schedule (FBIS) was used to assess burden of caregivers. Bivariate and multivariable linear regression analyses were performed to determine the predictors of burden among caregivers.; Results: Nearly two-thirds [264 (65.0%)] of the participants were male with a mean age of 38.45 ± 12.03 years. The mean score for burden among caregivers on family burden interview schedule was 23.00 ± 10.71. Age of the caregivers (β = 0.18, p < 0.001), being female caregiver (β = 2.68, p < 0.01), duration of contact hours with the patient per day (β = 0.74, p < 0.001), perceived stigma by the caregiver (β = 0.47, p < 0.001), and providing care for patients who had history of substance use in life (β = 1.52, p < 0.05) were positive predictors of higher burden among caregivers. Whereas, caregivers' income (β = 7.25, p < 0.001), caregivers who had no formal education (β = 4.65, p < 0.01), and caregivers' social support (β = 0.78, p < 0.001) were negatively associated with higher burden among caregiver.; Conclusion: Caregivers of people with mental illness experience enormous burden during providing care for their relatives with mental illness. Therefore, creating community awareness and targeted interventions in the area of treatment access, stigma, financial, and other social support for people with mental illness and their caregivers would help out to reduce these burdens.
Health and care services for patients may improve or harm the wellbeing of their family carers. Formal consideration of these effects (also known as spillovers) in decision-making is advocated, but, to date, little is known about how they occur. This paper presents the first empirical study to determine the mechanisms by which health and care services affect family carers' wellbeing. The study focused on three major health conditions: dementia, stroke, and mental health. Focus groups and interviews were conducted with 49 purposefully sampled care professionals and family carers in the UK between December 2016 and September 2017. Transcripts were coded and analysed thematically, using descriptive accounts and an explanatory account. The analysis generated six over-arching mechanisms by which health and care services affect family carers' wellbeing, through:
Each mechanism was associated with sub-themes relating to both positive and negative spillovers on the family carers. The six mechanisms can be summarised with the mnemonic ‘IMPACT’. The IMPACT mechanisms may be useful in designing and evaluating services to optimise the wellbeing of carers as well as patients. •First qualitative study to identify mechanisms behind family carer spillovers.•Mechanisms were ‘information’, ‘management’, ‘patient’, ‘alienation’, ‘compliance’, ‘timing’.•Summarised by mnemonic IMPACT and relevant across conditions.•Each mechanism generated positive and negative spillover.
Background: Bipolar disorder (BD) is a chronic mental disorder, and family members play a key role in taking care of the affected individuals. The recovery movement has gradually transformed mental health services, for example, through the introduction of peer support services (sharing of expert-by-experience knowledge), and it has challenged the prevailing view that people with mental illness cannot recover.; Aims: Through this study, the researchers explored how family caregivers in a Chinese context conceptualise recovery, how caregivers interact with peer support workers (PSWs) and how they perceive peer support services.; Methods: Fourteen family caregivers from community settings participated in individual semi-structured interviews. The data were analysed through thematic analysis.; Results: Family caregivers had multifaceted definitions of recovery and had various degrees of contact with PSWs. The views and experiences shared by PSWs were hope-instilling for caregivers and changed their perception of BD and their loved ones. Some limitations of PSWs were also identified.; Conclusion: Social connectedness and functional outcomes were important indicators of recovery among Chinese family caregivers. Caregivers began to understand the benefits of PSWs after experiencing their services. Peer-led services could be a helpful support for both service users and family caregivers.;
Aim: The present study examined the association between depression of persons with dementia and family caregiver burden, as well as whether the association depended on the level of caregivers' ability to find positives in caregiving.; Methods: Based on the medical records of a local mental health hospital and the statistics of an epidemiological survey, this cross-sectional study included 157 major family caregivers of non-institutionalized dementia patients in the rural sector of Western China's Sichuan Province. They responded to the Cornell Scale for Depression in Dementia, a short version of the Zarit Burden Interview, a subscale of a caregiver meaning scale and demographic questions.; Results: Controlling for the demographic variables of the caregivers, the present study found that dementia patients' depression level was significantly associated with caregiver burden (P < 0.001), and the caregivers' levels of finding positives in caregiving significantly moderated the association (P < 0.05). Furthermore, the positive correlation between dementia patients' depression and caregiver burden was weaker among the family caregivers with a high level of finding positives in caregiving, compared with those with a low level of finding positives in caregiving.; Conclusions: This research suggests the importance of facilitating family caregivers of dementia patients to find positives in caregiving. It provides initial data for the development of dementia caregiver burden interventions that are based on the understanding of the deep meaning of dementia caregiving.
Background/aim: Families, especially in Chinese society, play a crucial role in care provision for relatives with schizophrenia, but the burden of caregiving has shown to cause significant distress among caregivers. The aim of the study is to assess the degree of stress and burden among caregivers of relatives with schizophrenia and early psychosis in Hong Kong.; Methods: A cross-sectional survey was conducted in 454 caregivers recruited from two mental health non-governmental organisations and the outpatient clinic of a psychiatric hospital. Data were collected through a questionnaire administered via face-to-face or telephone interview.; Results: Caregivers attributed most of their conflicts with the ill relative or other family members to their own lack of knowledge of patient symptoms (56.4%), other family members' lack of knowledge of patient symptoms (46.9%) or the ill relative's refusal to take medications (43.0%). Most of the caregivers had corresponding stress scores of 5 (scale: 1-5; mean = 3.88, 3.85 and 4.19, respectively). Nearly, a third (30.2%) of the caregivers surveyed reported an overall stress score of 5 (mean = 3.56). Regarding psychosocial problems, 78.0%, 49.8% and 45.8% of caregivers experienced anxiety, reduced socialising and insomnia, respectively.; Conclusions: Caregivers of relatives with schizophrenia and early psychosis experience significant stress and psychosocial burden. To help them cope with distress, community support services should be strengthened. Moreover, long-acting injectable antipsychotics are worth considering to alleviate caregiver burden due to ill relatives' medication compliance issues.
Family members often provide significant support and care to their relative who has a mental illness. Nonetheless, how family members might be part of an individual's mental health recovery journey is rarely considered. The aim of this study was to investigate how those with a mental illness define 'family' and the role of family (if any) in their recovery journey. A qualitative approach was used. Purposive sampling and snowballing were used to recruit and conduct semi‐structured interviews with 12 people who have been diagnosed with a severe mental illness. Participants defined family in various ways with some being very inclusive and others more selective. There was acknowledgement that family contributed to the individual's recovery in a myriad of ways, although the need for boundaries was stressed. While no participants suggested that their family might become active treatment facilitators, they did want clinicians to support them in talking to their family about their mental illness. A multifaceted approach is needed to promote family‐focused recovery practice. The needs of different family members and the needs of the family as a group should be considered concurrently alongside the individual's needs in their recovery plan. Individual and relational components of recovery should be embedded in policy and clinical practice.
Background: The shift towards providing mental healthcare in the community has resulted in caregivers becoming more involved in the delivery of these services. Supporting mental health consumers can be burdensome which, in conjunction with the anguish that may result from observing their relative develop a mental illness, can lead to carers experiencing significant levels of distress.; Aims: This study aimed to quantify the extent to which specific aspects of caregiving contribute to mental health burden in Australia.; Methods: Participants were included if they were Australian mental health caregivers. An online questionnaire was distributed via email. Multivariate logistic regression was used to identify predictors of burden in mental health caregivers.; Results: Completed questionnaires were collected from 231 respondents. The logistic regression analysis yielded five factors that contributed significantly to mental health caregiver burden. Of these factors, a strained atmosphere and regularly carrying out tasks for consumers were the two strongest predictors of burden.; Conclusion: Community health professionals could focus on interpersonal relationships between family members, access to disability and financial support services, and carers' views about the quality of healthcare provided to consumers. Addressing these issues may decrease carer burden and improve the quality of life for all family members.
Purpose: Schizophrenia places a heavy burden on the individual with the disorder, as well as on his or her family; this burden continues over the long course of the disease. This study aimed to provide an overview of the positive and negative impacts of schizophrenia on family caregivers.; Methods: From April to June 2017, two investigators conducted a systematic review and meta-summary of studies obtained from five electronic databases and the footnotes and citations of eligible studies. Qualitative studies that explored the experiences of family caregivers of individuals with schizophrenia were included. Study findings published between 1993 and 2017 were extracted and synthesised using narrative and summative approaches.; Results: After the removal of duplicates, independent reviewers screened 864 records. Subsequently, 46 full-text articles were assessed for eligibility and 23 papers were included in the synthesis. Negative impacts identified were traumatic experiences, loss of expectation of life and health, lack of personal and social resources, uncertainty and unpredictability, family disruption, conflict in interpersonal relationships, difficulty in understanding, and stigma and heredity. Meanwhile, the positive impacts identified were family solidarity, admiration, affirmation, affection, compassion, learning knowledge and skills, self-confidence, personal growth, and appreciation.; Conclusions: Analysis of the studies suggested that family members of individuals with schizophrenia face a series of traumatic situations during the course of the illness. Their subsequent experiences can be conceptualised as a continuous circle of caregiving, in which the positive impacts can be centrally positioned within the negative impacts.
Introduction: Many studies have investigated the correlates of affiliate stigma among family caregivers of people with mental illness (PWMI). Thus far, no systematic review or meta‐analysis has been conducted to synthesize these results. Aims/Question: This review aims to identify the correlates of affiliate stigma among family caregivers of PWMI. Method: We searched four databases including PubMed, PsycINFO, EMBASE and Web of Science for studies that investigated the association of affiliate sigma with socio‐demographic, psychosocial and disease‐related factors. Results: Twenty‐two studies including 3,381 participants met the inclusion criteria. Eighteen variables were included for the meta‐analysis. For disease‐related characteristics, only "disease attribution" and "care time/day" were associated with affiliate stigma. For psychosocial characteristics, "support from others," "burden," "depression," "stress," "distress" and "face concern" were related to affiliate stigma. Discussion: This review is the first to assess the association of affiliate stigma with other characteristics of interest. However, the findings are limited due to a very small number of studies. Researchers should conduct in‐depth study in this area and improve the quality of the literature. Implications for practice: Health‐focused interventions for family caregivers such as respite care, self‐help groups, online support program and psychosocial education can mediate the impact of affiliated stigma.
Background: A substance-dependent person affects almost all aspects of family life, for example, interpersonal and social relationships, leisure time activities, and finances. Substance dependence invariably increases conflicts, negatively affects family members, and burdens the families. Aims and Objectives: To assess family burden perceived by primary caretakers (PCTs) of individuals with substance dependence and relevant clinico socio demographic profile of individuals as well as PCTs. Materials and Methods: Individuals and primary caretakers (n = 150) attending psychiatry OPD and emergency were included in the study. Individuals were selected by convenient sampling. The individuals and PCTs were administered psychiatric thesis/interview pro forma and drug abuse schedule. PCTs were administered "family burden interview schedule." Results: Majority of caretakers had moderate objective burden (65.3%) and severe subjective burden (74%). Objective burden was more in areas of "financial burden" and "disruption of routine activities." Objective burden had correlation (P < 0.05) with monthly family income, monthly expenses on substance, number and type of substances, treatment history, sex and type of caretaker. Subjective burden was dependent on sex and type of caretaker and treatment history of the patient. Conclusion: Our study concluded that substance dependence is associated with substantial burden for family members, more for subjective and objective burden in families with low income and with patients who are dependent on more number of substances and had taken treatment in the past. Higher proportion of severe burden was reported by female caretakers. These findings suggest directions for future research in this area.
The aim of this study was to test the hypothesis that a negative reaction to the illness would be reduced through the "Collaborative Care Skills Workshops" programme among Spanish caregivers of relatives with an eating disorder. Caregivers were randomly allocated to either the skill‐based workshops (n = 32) or psycho‐educational workshops (n = 31), and assessments were carried out over time (T0 vs. T1 vs. T2). There were no significant differences between interventions on primary or secondary caregiver outcomes or among the patients themselves. However, caregivers in both interventions showed greater improvement at T2 on accommodating and enabling behaviours and an improvement at T1 in terms of psychological distress and appraisals towards the caregiving experience. Eating pathology, psychological distress, and some indices of psychosocial adjustment were significantly lower among the patients following both interventions (T1). Overall, both interventions may be able to help caregivers and patients to decrease their psychological distress. Highlights: Involvement of family members in the treatment could be the best resource for aiding in their relative's recovery.This is the first controlled study to test the effectiveness of the Collaborative Care Skills Workshops in Spanish caregivers.Both interventions could be implemented as both help Spanish caregivers and patients.
Purpose: To examine the illness perceptions of informal carers of persons with depression, using the theoretical framework of Leventhal's Common-Sense Model (CSM) and to determine whether these illness perceptions are predictors of anxiety and depression, as measures of psychological well-being. Methods: A cross-sectional survey was conducted with 94 Maltese individuals caring for a person with depression within a community setting. The informal carers completed the modified Illness Perception Questionnaire (IPQS-Relatives version) and the Hospital Anxiety and Depression Scale (HADS). Data were analysed using descriptive statistics, Spearman's rank order correlations and ANCOVA regression models, to identify predictors of anxiety and depression respectively in the informal carers. Results: The informal carers perceived depression as a cyclical condition, having negative consequences on both the patient and on themselves. Participants perceived the causes of depression to be mainly psychosocial in nature and generally viewed the treatment as effective. Caring for a person with depression was perceived as having a considerable negative emotional impact on them. Years of caring was identified as a predictor of anxiety accounting for 20.4% of the variance, and timeline chronicity beliefs, consequences (relative) and illness coherence were identified as predictors of depression, accounting for 56.8% of the variance. Conclusion: Illness cognitions are significant predictors of depression, thereby suggesting that cognition-based interventions may be effective in targeting depression in these informal carers. Thus, health professionals should explore the carers' personal understanding of the disease, their timeline beliefs and the perceived consequences of providing care, as they relate to their psychological well-being.
Purpose: To know the health perceived by the family caregivers of Alzheimer's disease, according to the relationship of kinship and the duration of the care in mild‐to‐moderate stage of dementia. Design and Methods: Cross‐sectional descriptive study in 255 caregivers. The instruments used were an ad hoc questionnaire and the Goldberg General Health Questionnaire (GHQ‐28). Findings: The presence of acute and chronic mental pathology has been observed. Specifically in the spouses and children, severe depression and social dysfunction, and in periods of care between 2 and 5 years, mainly anxiety and insomnia have been observed. Practice Implications: The relationship of kinship and the duration of care must be taken into account in the planning of specific interventions in these caregivers.
The longitudinal association of changes in clinical status among adults with schizophrenia and changes in family caregiver burden has not been demonstrated. Using data from the NIMH-funded CATIE schizophrenia trial (n = 446 family caregivers), we examined the association of changes in patient symptoms and quality of life with changes in measures of family caregiver burden. Clinical changes in patient symptoms and quality of life were not significantly associated with changes in family caregiver burden. The weak association likely reflects that small clinical changes in chronically ill adults are insufficient to affect long established experiences of burden.
Mental health continues to fight for acceptance in health care all over the world. The need for a separate act for mental illnesses proves this fact even more. The very nature of the mental illness has necessitated legislation to aid the service providers and service users. The Mental Healthcare Act 2017 has taken great initiatives in terms of protection of human rights for people with mental illness such as the inclusion of mental illness in health insurance, stress on informed consent, decriminalization of suicide, and introduction of advance directives (ADs) and punishment to those who violate the law. However, in a country like India where the family as a unit has more significance than personal autonomy, the new act emphasizes the patient's rights and, in doing so, may make the doctors more defensive and fearful in making clinical decisions, thus shifting the burden to the shoulders of the family members. There is a need for suitable amendments to include the family's concerns as well; otherwise, the present act would stand as an alien Western law enforced on Indian cohesive family dynamics. Qualitative studies are required from the family's perspective to illustrate the hindrances that the patients' families are facing. In the context of Indian family structure and dynamics and working in the Indian community, we feel that without suitable amendments to include the family's concerns, the present act would stand as an alien Western law enforced on Indian cohesive family dynamics.
Families play a crucial role in determining the mental health of the autistic individual(s) they are caring for. However, the stigma associated with autism can impair caregiver health. To investigate this, empirical evidence pertaining to stigma's impact on informal caregivers' mental health was systematically reviewed. All twelve included studies (n = 1442 informal caregivers) consistently reported the impact of autism related stigma upon caregiver mental health to be significant, meaningful and complex. A new theoretical framework describing the relationship between stigma and caregiver mental health is constructed. Moderating variables include those both changeable through intervention (e.g. hopelessness, self-esteem, self-compassion) and not changeable (gender, culture, financial burden and time since diagnosis). Implications and recommendations for professionals, interventions and future research are proposed.
Aims First-episode psychosis (FEP) is a major life event and can have an adverse impact on the diagnosed individual and their families. The importance of intervening early and providing optimal treatments is widely acknowledged. In comparison to patient groups, literature is scarce on identifying treatment predictors and moderators of caregiver outcomes. This study aimed to identify pre-treatment characteristics predicting and/or moderating carer outcomes, based on data from a multi-element psychosocial intervention to FEP patients and carers (GET-UP PIANO trial).; Methods: Carer demography, type of family relationship, patient contact hours, pre-treatment carer burden, patient perceptions of parental caregiving and expressed emotion (EE) were selected, a priori, as potential predictors/moderators of carer burden and emotional distress at 9 months post treatment. Outcomes were analysed separately in mixed-effects random regression models.; Results: Analyses were performed on 260 carers. Only patient perceptions of early maternal criticism predicted reports of lower carer burden at follow-up. However, multiple imputation analysis failed to confirm this result. For treatment moderators: higher levels of carer burden at baseline yielded greater reductions in carer emotional distress at follow-up in the experimental group compared with treatment as usual (TAU). Higher levels of perceived EE moderated greater reductions in carer reports of tension in experimental group, compared with TAU, at follow-up. In younger caregivers (<51 years old), there were greater reductions in levels of worry during the baseline to follow-up period, within the experimental group compared with TAU.; Conclusion: The study failed to identify significant treatment predictors of FEP carer outcomes. However, our preliminary findings suggest that optimal treatment outcomes for carers at first episode might be moderated by younger carer age, and carers reporting higher baseline levels of burden, and where patients perceive higher levels of negative effect from caregivers.
A cross-sectional descriptive correlation study was performed to investigate the risk of posttraumatic stress disorder (PTSD) among 300 family caregivers of individuals with schizophrenia or bipolar disorder and examine the relationship between perceived social support and risk of PTSD. The Arabic version of the PTSD Checklist for DSM-5 (APCL-5) was used to investigate risk of PTSD; the Arabic version of the Multidimensional Scale of Perceived Social Support was used to measure perceived social support. Mean score of the APCL-5 was 46.1, indicating risk of PTSD among family caregivers. A negative moderate correlation was found between risk of PTSD and perceived social support. The caring process is demanding and highly stressful, putting family caregivers at risk for PTSD. Social support is crucial in decreasing this risk. [Journal of Psychosocial Nursing and Mental Health Services, xx(x), xx-xx.].; Copyright 2019, SLACK Incorporated.
Background and Aim: The European Association of Palliative Care recommends that family carers need education on the progression of dementia. This systematic review aimed to explore whether interventions incorporating education regarding the progressive nature of dementia increased carers' understanding of dementia and improved mental health and burden.; Method: MEDLINE, PsycINFO and CINAHL were searched to April 2018. Randomised controlled trials with samples of family carers of someone with dementia were eligible. Included interventions involved a component aimed to increase the carer's understanding of the progression of dementia. Outcomes of interest included: knowledge of dementia, depression, burden and pre-death grief.; Results: Searches identified 3221 unique citations of which 11 studies were eligible for review. Interventions ranged from 4 to 16 sessions of which 1 to 3 sessions focused on the progression of dementia. Knowledge: Two studies evaluated carers' knowledge of dementia. One found no difference between the trial arms immediately after the intervention or three months later. The second found a significant intervention effect at the end of the intervention but not at three-month follow-up. Depression: Seven studies evaluated intervention effects on depression. Meta-analysis of three trials showed significant differences in mean follow-up scores favouring intervention over control. The remaining four studies did not show differences in depression between intervention and control groups. Burden: Nine studies evaluated burden and were examined in two meta-analyses (mean scores at follow-up and mean change scores from baseline to follow-up), neither of which found a benefit for intervention over control. Using the grading of recommendations assessment, development and evaluation system, we judged the quality of evidence to be very low for depression and low for burden, knowledge and pre-death grief, reducing our confidence in any of the effect estimates.; Conclusion: The evidence was not sufficient to support or refute the effectiveness of education on progression of dementia on carers' knowledge and mental health.
This article presents the findings of exploratory research on the mental health and community services experiences of informal/family carers of people from LGBTQ communities living with mental illness, or experiencing a mental health crisis. The aim of the research is to explore the experiences of carers in relation to provisions for carers and people from LGBTIQ communities in the mental health legislation, policy and practice standards in the state of Victoria in Australia. Data were collected from online surveys and in-depth interviews and analysed according to the alignment of the stated intent of these documents and the actual experiences of carers.
This exploratory study examines the experiences of informal/family carers of people from LGBTQ communities living with mental illness, or experiencing a mental health crisis, in relation to conflict and safety in their interactions with mental health service providers. Carers were surveyed to gain an understanding of their experiences of services. The data were analysed according to the six main originating domains in the Safewards model where conflict may arise as well as the nature of the activity in the domain with the addition of new categories of 'carer characteristics' and 'carer modifiers'. The study findings identified the main domains where conflict occurred, as well as modifications to activities undertaken by staff, consumers, and carers that reduced tensions and misunderstandings. Carer responses revealed the interplay between the Safewards domains and activities and the location of much of what was considered conflict with staff reflecting the regulatory environment services were provided in. This study highlights distinctive carer characteristics and the important conflict modifying role of carers. The findings suggest that the expansion of the Safewards model to include carers may be beneficial.
Informal carers are increasingly involved in supporting people with severe and enduring mental health problems, and carers' perceptions impact the wellbeing of both parties. However, there is little research on how carers actually make sense of what their loved one is experiencing. Ten carers were interviewed about how they understood a loved one's psychosis. Data were analysed using a hermeneutic-phenomenological approach. Three themes described the carers' effortful quest to understand their loved one's experiences while maintaining their relational bonds. Carers described psychosis as incomprehensible, seeing their loved one as incompatible with the shared world. To overcome this, carers developed hermeneutic 'mooring points', making sense of their loved one's unusual experiences through novel accounts that drew on material or spiritual explanations. The findings suggest that informal carers resist biomedical narratives and develop idiosyncratic understandings of psychosis, in an attempt to maintain relational closeness. We suggest that this process is effortful - it is hermeneutic labour - done in the service of maintaining the caring relationship. Findings imply that services should better acknowledge the bond between carers and care-receivers, and that more relationally oriented approaches should be used to support carers of people experiencing severe mental health problems.
Purpose: To evaluate the quality of life (QoL) and social support among family caregivers of a family member with a mental illness and to identify factors associated with the QoL.; Methods: This is a cross-sectional study, where participants were recruited and independently interviewed using a questionnaire, consisting of demographic characteristics, the Medical Outcome Survey SF-36 form, and social support rating scales. Multiple stepwise regression analysis was used to analyse the factors related to QoL.; Results: 181 family caregivers were recruited in Shandong province, China. On a composite QoL score, family caregivers perceived that their QoL was poor (68.3), especially in the aspects of role-physical (61.3), role-emotional (57.6) and mental health (63.0). We also found family caregivers received low social support, especially in objective support and utilization of social support. Patient's illness state, care time, financial burden and objective support were significantly correlated to caregivers' QoL in the physical component score (PCS). Patient's illness state, patient's marital status, family monthly income, caregiver's knowledge about the illness, caregivers coordinating caring, life and work, subjective support received and utility of support were significantly associated with caregivers' QoL in the mental component score (MCS).; Conclusions: Social support had a significant correlation with caregivers' QoL. Caregivers should be encouraged to request assistance from other family members and friends in providing care, especially when caregivers are unemployed or long-time carers. Mental health education campaigns and helping families to maintain and enhance a supportive social network may provide useful means to improve caregivers' QoL.
PURPOSE: We examined associations between caregiving intensity and mental health among cancer caregivers at the population level and potential moderation by an actionable intervention target, support service needs. METHODS: Behavioral Risk Factors Surveillance System survey data (2015) from caregivers of adult patients with cancer was analyzed. Caregiving intensity included hours per week caregiving (high, > 20; low, ≤ 20) and caregiving duration (long, > 2 years; short, ≤ 2 years). Mental health was reported as number of mentally unhealthy days (MUDs) in the past 30. Support service needs comprised caregiving classes, service access, support groups, counseling, and respite care. Multivariable linear regression models were performed adjusting for sociodemographics and sampling weights. RESULTS: A total of 1,831 caregivers were included in the study, representing approximately 1.1 million cancer caregivers in the 18 US states, distributed with the following intensity: 122 (8.3%) caregivers reported care at high hours/long duration, 213 (13.1%) high hours/short duration, 329 (18.4%) low hours/long duration, and 910 (60.2%) low hours/short duration. Mean MUDs was 6 (SE, 0.5). The highest reported unmet service need was help with service access (48.4%). Higher caregiving intensity and support service need were associated with more MUDs (P <.05), with a significant interaction (P =.02) between caregiving intensity and unmet support service needs. High hour/long duration caregivers reporting any unmet needs had a mean of 15 versus 8 MUDs for those with no unmet needs. CONCLUSION: High-intensity cancer caregiving was associated with poor mental health, especially for those reporting support service needs. Developing strategies to optimize support service provision for high-intensity cancer caregivers is warranted.
Informal carers play a vital role in supporting Australians living with a mental illness, including during the acute phases of illness; however, little is known about their impact on length of hospital stay. We aimed to investigate the impact of having a carer and of carer burden on length of hospital stay for mental health. Two Australian datasets were used. Data from the 2010 National Survey of High Impact Psychosis (n = 1825) were used to investigate the impact of having versus not having a carer on length of hospital stay for mental health. Data from the UQ Carer Survey 2016 (n = 105), a convenience sample of mental health carers, were used to investigate the impact of weekly hours of care (a measure of objective carer burden) on length of stay. Multiple logistic regression and correlation analyses were performed to investigate the association between carer status/burden and length of stay. Having a carer was associated with a significantly longer length of hospital stay; however, this relationship was no longer significant after adjusting for diagnosis, global functioning, depressive symptoms, deliberate self-harm, mental health outpatient contacts and type of admission. Weekly hours of care did not significantly impact on length of stay. Patients with carers had poorer functioning which may be related to longer stays. Our analysis was not able to look at subgroups of carers with different needs. Future work is required to determine other components of the admission and discharge process where having a carer is influential.
Aims: This literature review examines the effectiveness of the family interventions (FIs) targeted at the primary caregivers of people diagnosed with schizophrenia on improving the knowledge level of schizophrenia and health‐related outcomes. Methods: A total of nine studies were reviewed from December 1999 to May 2017. The methods described by the Center for Reviews and Dissemination were used to guide this review. Results: The FIs showed consistent improvement in the knowledge level of schizophrenia among participants for various follow‐up intervals. In addition, FIs were found to be superior to treatment as usual in influencing health‐related outcomes. Conclusions: Implications of the findings for mental healthcare practice to include primary caregivers with the patient in the treatment process.
Family caregivers (FCs) of people with mental illness (PMI) experience caregiving-related distress. These challenges tend to be greater for Asian American families due to acculturative stress and structural barriers to services. However, little is known about caregiving-related experiences among FCs of PMI within a cultural context. By using an exploratory approach, we examined the experience of caregiver distress and the influence of cultural values on caregiving in European American and Chinese American FCs. In collaboration with community-based agencies, a combination of convenience and snowball sampling methods were used to recruit Chinese American and European American caregivers who co-reside with PMIs. Two focus groups with each ethnic group with 57 participants (30 Chinese and 27 European American) were conducted. Thematic analysis indicates that FCs experience intense emotions, health/mental health problems, and a negative impact on their personal/social lives. Whereas Chinese American FCs reported shame, lack of knowledge, and over-protectiveness of PMIs, European American FCs reported the need for advocacy on behalf of the PMI. Findings indicate a need for: 1) greater awareness of the caregiving experience on wellbeing of FCs; 2) an understanding of how cultural values may influence caregiver experience; and 3) developing culturally relevant prevention and intervention services that can support FCs from diverse cultural contexts.
Carers of persons with borderline personality disorder (BPD) experience high burden. Treatment guidelines advocate involving carers in comprehensive therapy approaches. This study is a randomized controlled trial of group psychoeducation, compared to waitlist. Group psychoeducation involved 6–8 carers per group and focused on improving relationship patterns between carers and relatives with BPD, psychoeducation about the disorder, peer support and self-care, and skills to reduce burden. Carers were randomized into intervention (N = 33) or waitlist (N = 35). After 10 weeks, those in the intervention reported improvements in dyadic adjustment with their relative, greater family empowerment, and reduced expressed emotion, sustained after 12 months. There were also improvements in carers' perceptions of being able to play a more active role, such as interacting with service providers. This study demonstrates that providing structured group programs for carers can be an effective way of extending interventions to a group experiencing high burden.
Background: Coercion and restraint practices in psychiatric care are common phenomena and often controversial and debatable ethical issue. Caregivers' attitude and perspective on coercion and restraint practices on psychiatric inpatients have received relatively less research attention till date. Aims: Caregivers' attitude and perspective on coercion and restraint practices on psychiatric inpatients. Methodology: This is a hospital-based, a descriptive, cross-sectional study. A total of 200 (n = 200) consecutive patient and their caregivers were chosen between June 2013 and September 2014 through computer-generated random numbers sampling technique. We used a semi-structured interview questionnaire to capture caregivers' attitude and perspective on coercion and restraint practices. Sociodemographic and coercion variable were analyzed using descriptive statistics. McNemar test was used to assess discrete variables. Results: The mean age was 43.8 (±14.9) years. About 67.5% of the caregivers were family members, 60.5% of them were male and 69.5% were from low-socioeconomic status. Caregivers used multiple methods were used to bring patients into the hospital. Threat (52.5%) was the most common method of coercion followed by persuasion (48.5%). Caregivers felt necessary and acceptable to use chemical restraint (82.5%), followed by physical restraint (71%) and electroconvulsive therapy (ECT) (56.5%) during acute and emergency psychiatric care to control imminent risk behavior of patients. Conclusion: Threat, persuasion and physical restraint were the common methods to bring patients to bring acutely disturbed patients to mental health care. Most patients caregivers felt the use of chemical restraint, physical restraint and ECT as necessary for acute and emergency care in patients with mental illness.
This study explored the experiences of individuals who self‐identify as providing support to a friend, family member, or significant other with posttraumatic stress disorder (PTSD). We analyzed and coded a total of 345 posts from an online support forum, with reference to 13 categories (finances, life interference, venting/emotional expression, maltreatment, sexual behavior, distress, prevented expression, physical health, communication, no personal space, isolation, and compassion fatigue). Categories for coding were established a priori and based on previous literature about caregiving and supporting. Results suggested that informal PTSD caregivers experience concerns involving interpersonal relations, emotional turmoil, and barriers to care for themselves and the individual they are caring for. This study provides a preliminary examination of the experiences and concerns of PTSD caregivers. Implications and suggestions for future research are discussed.
Background: Depression is a major psychiatric disorder worldwide. It is a leading cause of individual disability and family burden worldwide. The aim of the study: the aim of this study was to investigate the effect of family intervention on caregivers' burden, depression, anxiety and stress among relatives of depressed patients. Subjects and method: A quasi-experimental design was conducted at the inpatient and outpatient Psychiatric Department Mansoura University Hospital, Egypt. Ninety five families participated in this study (n = 95). Pre-tests and post-tests (n = 95), and test 3 months after intervention were conducted on eighty six (n = 86). The caregivers were divided into ten groups, which ranged from 8 to 10 caregivers in each group; each group attended 12 sessions. A structured interview questionnaire for personal data for patients and their caregiver, Caregiver Burden scale, quality of life scale (QOL) and Depression, Anxiety and Stress Scale-21 items (DASS-21) were used to collect data. Results: The findings of the study indicate that caregivers' burden, depression, anxiety and Stress level significantly reduced, and quality of life significantly improved after implementation of family intervention. There is a negative correlation between QOL and Caregivers' burden, and their feeling of depression, anxiety and stress, while there was a positive correlation between caregivers' burden and their feeling of depression, anxiety and stress. Conclusions: Based on the current results, it can be concluded that caregivers' burden, |depression, anxiety and stress are highly prevalent among caregivers of patients with depression and significantly improved after implementation of family intervention one month after, moreover it slightly decreased three months after intervention. This conclusion leads to accept the hypothesis of the study that family interventions improve the caregivers' burden, QOL, and feelings of depression, anxiety and stress. Further research is needed to follow the intervention 6 and 12 months after family intervention.
Purpose: A multiphase model for experiences of family members of persons with mental illness that considers both positive and negative aspects is proposed. Design and Methods: Mixed methods (semistructured interviews, life history timelines, focus group discussions, and the Experience of Caregiving Inventory) were used with caregivers accessing outpatient services of a nongovernmental organization in urban and rural locations around Chennai, India. Findings: Based on our results, we constructed a multiphase model, which we named The Banyan model of caregiver experiences. The phases are (1) manifestation of symptoms, (2) seeking help, (3) helplessness and attribution, (4) relative control and insight, (5) loss and worries, and (6) finding new meaning. Practical Implications: Our multiphase model allows us to identify in more detail the needs of caregivers at various stages.
Objective: To determine the frequency of high burden of care on family members of patients with Schizophrenia. Study Design: Descriptive, Cross-sectional study. Place and Duration: Department of Psychiatry, Civil Hospital Karachi for Six months from 15th September, 2014 till 15th March, 2015. Methodology: Caregivers fulfilling the selection criteria were enrolled. "Zarit Burden Interview" (ZBI) was used for assessment of high burden over caregivers of schizophrenic patients. Different demographic factors like gender, age, education and employment status were also assessed. Results: Out of 150 caregivers, majority 83.3% were married followed by 9% being single and 9% being widow. In this study 58% caregivers had high burden as measured on ZBI. Out of those having high burden 52.8% were males while 47.2% were females. While gender distribution in caregivers having no burden 65% was males and 35% were females. Conclusion: This study reveals a high burden among caregivers living with patients of Schizophrenia.
Background: Family caregivers play crucial roles in taking care of people experiencing schizophrenia in the community. The burdens on and needs of caregivers of these patients should be emphasized. This study aimed to explore the perspective of family caregivers of people experiencing schizophrenia in the communities of Beijing in terms of the burdens of care and the acquisition and further need for support in order to provide guidance to health care providers regarding how to target therapeutic interventions for families of individuals experiencing schizophrenia and to provide recommendations for policy makers to tailor countermeasures and services.; Methods: A total of 20 family caregivers of schizophrenia patients were enrolled in our study. A face-to-face and semi-structured in-depth qualitative interview study was conducted to explore the caregivers' perspective on the burden on caregivers, support and further needs. This study was conducted in the community health service centres where the family caregivers regularly visit. The study was carried out according to good ethical practices, data analysis and reporting guidelines.; Results: Most participants reported that they were suffering from heavy life burdens and had negative experiences with respect to obtaining social support, and they emphasized that they would require more support. Economic and daily housework burdens, limited social communication, and psychological stresses were the principal burdens. Support including financial, medical and information and educational support did not satisfy the needs of the caregivers and their patients. More financial support, respect, and rehabilitation institutions were reported to be needs of the caregivers.; Conclusions: Family caregivers of people experiencing schizophrenia suffer from heavy physical and psychological burdens; however, the current support provided is insufficient. More services and better public attitudes should be considered for people experiencing schizophrenia and their caregivers.
People with mental illness and their family caregivers often perceive public stigma, which may lead to stigma-related stress (or stigma stress). However, no instruments have been developed to measure this stress for family caregivers of people with mental illness. We modified an instrument that measures the stigma stress of people with mental illness (i.e., the cognitive appraisal of stigma as a stressor) and examined the psychometric properties of the scores of the newly developed instrument: the Family Stigma Stress Scale (FSSS). Primary family caregivers of people with mental illness in Southern Taiwan ( n = 300; mean age = 53.08 ± 13.80; 136 males) completed the FSSS. An exploratory factor analysis showed that the FSSS score had two factors; both factor scores had excellent internal consistency (α = .913 and .814) and adequate test-retest reliability ( r = .627 and .533; n = 197). Significant correlations between FSSS factor scores and other instruments supported its concurrent validity and the ability of the FSSS to differentiate between clinical characteristics, for example, having been previously hospitalized or not. The FSSS is a brief and effective measure of the stigma stress of family caregivers of people with mental illness.
Review Question: What are the spiritual aspects of family caregivers' experiences when caring for a community-dwelling adult with severe mental illness?;
Aims: When experiencing mental health difficulties, university students turn to their friends for support. This study assessed the consequences of caregiving among a university sample, identifying predictors of caregiving burden among students. Methods: A total of 79 students with experience of supporting a friend with mental health difficulties were recruited through a UK student mental health charity to complete an online survey. Alongside qualitative data, the online survey used the Experience of Caregiving Inventory and the Involvement Evaluation Questionnaire as measures of the consequences of caregiving. Results: Students supporting friends, housemates or partners were found to experience significant consequences of caregiving. Frequency of face‐to‐face contact and duration of illness predicted more negative consequences of caregiving, but these relationships were not straightforward. The presence and intensity of professional support did not influence the experience of caregiving. Conclusions: The study suggests that the impact of supporting friends with mental health difficulties is not insubstantial for students. Broadening the network of informal social support may help improve the experience for students supporting a friend, but currently, contact with professional services appears to have a limited effect.
To a large extent caregivers perceive stigma through their social and community interactions by virtue of their association with persons with mental health problems. Meanwhile, evidence on their strategies for coping with potentially undesirable experiences linked with stigma is limited. Using a descriptive qualitative approach, the present study explored affiliate stigma among mental health professionals and family caregivers of persons with mental illness. Data, collected through one-on-one interviews with 10 mental health professionals and 10 family caregivers, were examined with content analysis. Findings revealed that, although stigma attached to mental illness was largely directed at sufferers and family caregivers, professionals sometimes had their fair share. To manage the negative impact of stigma, caregivers adopted various strategies including the use of realisation, tactical or planned ignoring, self-motivation, acceptance and religion. Implications of the findings necessitate the intensification of mental health education among the general populace, which must be targeted at demystifying mental illness.
Background: Caregivers play a crucial role in the clinical evolution of patients with schizophrenia. In order to optimize their support, it is necessary to adjust it according to the phase and severity of the patient's illness. However, little interest has been given in the experience of family caregivers as a function on disease progression. Objectives: The objective of this study was to explore the experiences of family caregivers of patients with schizophrenia at different stages of the disease. Materials and methods: Twelve family caregivers of schizophrenia patients at different stages of the disease e.g. First Psychotic Episode (n = 4), Relapse (n = 4), and Remission (n = 4) participated in the study. Each caregiver was interviewed for about an hour by a psychologist (the same for all) using an interview guide. This interview guide included key themes highlighted in the literature: family burden, stigma, potential gains in caregiving, and ways to cope with the disease. After retranscription, the research interviews were analyzed with the Alceste method in order to help reading and systematizing the data. Results: The qualitative analysis allowed to emerge representations, emotions and practices characteristic of each group. Thus, the interviews with the caregivers of the group First Psychotic Episode were marked by the confrontation with the psychiatric institution. This world was frightening for them: firstly because it was foreign, but also because the representations they associated with schizophrenia were often marked by stigmatization. Hence the shock of the diagnostic announcement, the pain related to the awareness of the disorder of their close relative and the worry about a future that has just darkened. In the Relapse group, caregivers expressed despair and disappointment about the new hospitalization of their relative. Some also expressed anger, often directed against the mental health care system, especially when the subjects didn't feel heard in their request. Finally, the speech of the caregivers of the Remission group showed a reconstruction process: the family go back to its daily life, not “despite” but “with” the patient's disease and its consequences. A new balance had been established, including better relations with their close relative with schizophrenia. The caregivers’ speech in the latter group also included some key components of the recovery process, such as accepting the mental illness, seeing it positively, perceiving gains related to illness and caregiving, and hope for the future. The clinical implications of these results are discussed. In particular, ideas for improving the caregivers’ support in psychiatric emergency units are proposed. Conclusions: The data collected in this study provide valuable insights into the experiences of those who “live with” a close relative with schizophrenia. Moreover, these data indicate that families would also experience a subjective recovery process comparable to that described in the literature on schizophrenia. In addition to its exploratory aspect, the results of this study suggest supportive strategies adapted to the concerns of families at different stages of the evolution of the patient's illness.
Background: Many people diagnosed with schizophrenia, bipolar or other psychoses in England receive the majority of their healthcare from primary care. Primary care practitioners may not be well equipped to meet their needs and there is often poor communication with secondary care. Collaborative care is a promising alternative model but has not been trialled specifically with this service user group in England. Collaborative care for other mental health conditions has not been widely implemented despite evidence of its effectiveness. We carried out a formative evaluation of the PARTNERS model of collaborative care, with the aim of establishing barriers and facilitators to delivery, identifying implementation support requirements and testing the initial programme theory. Methods: The PARTNERS intervention was delivered on a small scale in three sites. Qualitative data was collected from primary and secondary care practitioners, service users and family carers, using semi-structured interviews, session recordings and tape-assisted recall. Deductive and inductive thematic analysis was carried out; themes were compared to the programme theory and used to inform an implementation support strategy. Results: Key components of the intervention that were not consistently delivered as intended were: interaction with primary care teams, the use of coaching, and supervision. Barriers and facilitators identified were related to service commitment, care partner skills, supervisor understanding and service user motivation. An implementation support strategy was developed, with researcher facilitation of communication and supervision and additional training for practitioners. Some components of the intervention were not experienced as intended; this appeared to reflect difficulties with operationalising the intervention. Analysis of data relating to the intended outcomes of the intervention indicated that the mechanisms proposed in the programme theory had operated as expected. Conclusions: Additional implementation support is likely to be required for the PARTNERS model to be delivered; the effectiveness of such support may be affected by practitioner and service user readiness to change. There is also a need to test the programme theory more fully. These issues will be addressed in the process evaluation of our full trial. Trial registration: ISRCTN95702682, 26 October 2017.
Background: Caring for a person with borderline personality disorder remains largely stigmatised and misunderstood. When a crisis arises, carers often seek help with the person they care for in emergency care settings such as the emergency department. The aim of this review was to explore, locate and compile the literature regarding the perspectives of family carers for a person with borderline personality disorder in an emergency care setting with a focus on nursing practices. This review advances understandings of carer perspectives in emergency care settings. Methods: The Joanna Briggs Institute (2015) [1], methodology for scoping reviews guided this review. A search of Emcare, Medline and Ovid Nursing was performed during April 2018, to identify literature where carer views and perspectives on engaging with emergency care services were reported. A grey literature search was also conducted. A total of ten articles and reports were included in this review. Consultation with a carer support group precipitated this review, which assisted in the formulation of the research questions. Results: Papers found via the study focused on health professional responses, rather than on nursing practice. Findings indicate that carers often perceive emergency departments as the only option for emergency care in a crisis. Carers require information about how to effectively manage a crisis with their loved one more effectively. Conclusion: This scoping review identified that carers are often not consulted or engaged with by health professionals. Carers often perceive that nurses and health professionals have a lack understanding about the consumer's conceptualisation of distress and the nature of BPD, which becomes a barrier to effective crisis support and management. The literature often reported that a trusting and collaborative relationship between carers, nurses and health professionals demonstrated improved outcomes for the carer and consumer.
Borderline Personality Disorder (BPD) is a common mental illness impacting around 1 to 4% of the Australian population (National Health and Medical Research Council (NHMRC) 2012). Perspectives of family carers for people diagnosed with borderline personality disorder: A scoping review on the emergency care responses of nurses and other health professionals, Australasian Emergency Care. Managing people with mental health presentations in emergency departments: A service exploration of the issues surrounding responsiveness from a mental health care consumer and carer perspective,
With the recent movement toward a personal-recovery paradigm to treat schizophrenia, the locus of mental health care delivery has shifted toward community-based care. Family caregivers comprise a substantial component of that community, and are often providing care for longer periods, but often have no formal training or support. Caregiver-directed psychosocial interventions (CDPI) have been developed to train and assist caregivers in their efforts to maximize the odds of treatment success for those in their care. This meta-analysis compared CDPI versus treatment as usual (TAU) on outcomes such as hospitalization, relapse, non-compliance, and “other outcomes” (emergency services utilization, suicide attempt, and death). A systematic literature search (2005–2015) was conducted to identify randomized controlled trials of outpatient administered CDPI versus TAU to treat adult patients recovering from schizophrenia. Relative risks (RR) with 95% confidence intervals derived via random effects meta-analysis were calculated to compare CDPI versus TAU on the aforementioned outcomes. Eighteen of the 693 citations were retained for analysis. Overall RR for CDPI versus TAU suggested improved outcomes associated with CDPI: hospitalization [0.62 (0.46, 0.84) p < 0.00001], relapse [0.58 (0.47, 0.73) p < 0.00001] and other outcomes [0.70 (0.19, 2.57) p = 0.59]. CDPI was associated with significantly better compliance with medication and clinical activities combined [0.38 (0.19, 0.74) p = 0.005]. Medication compliance alone favored CDPI but was non-significant. Compliance with clinical activities alone favored CDPI significantly [0.22 (0.11, 0.47) p < 0.00001]. CDPI is associated with reductions in hospitalization, relapse, and treatment non-compliance.
Objective: Although various short forms of Zarit Burden Interview (ZBI) have been developed, there is a lack of standard psychometric testing and comparison among them. The study aims to examine the psychometric properties of ten short versions of the most frequently used ZBI among a sample of schizophrenia caregivers and to find the one with the best performance. Methods: Cross-sectional door-to-door survey of ZBI-22 and a series of validated instrument data from 327 family caregivers of schizophrenia patients in a Chinese rural community were conducted from October 2015 to January 2016. Reliability was assessed using McDonald's omega coefficient (ω). Validity including concurrent validity, known group's validity, and criterion validity were assessed by Spearman correlations and Mann-Whitney U tests. Overall discrimination ability was evaluated using the area under the receiver operating characteristic curve (AUC). Results: Reliability was generally good for all short forms (ω = 0.69-0.84), except for the Gort ZBI-4 (ω = 0.58), which is acceptable considering its small item numbers. Concurrent validity was good across all various ZBI forms with significant negative correlations with patient's function (r = -0.34 to -0.48, p < 0.01), as well as significant positive correlations with caregiver's depression (r = 0.49-0.65, p < 0.01), and anxiety symptoms (r = 0.45-0.58, p < 0.01). Known groups' validity (carers with disease vs. without disease; carers being parents vs. spouse vs. others) showed inconsistent results among various short forms. Criterion validity was generally good for all short forms with significant positive correlations with Family Burden Interview Schedule (r = 0.67-0.75, p < 0.01), except for the Higginson ZBI-1(r = 0.57, p < 0.01). Discriminative ability was also good for all short forms (AUC range: 0.85-0.99), with various cutpoints proposed. Among all ten short forms, the Ballesteros ZBI-12 and the Gort ZBI-7 outperformed others with almost equally good performance in comprehensive psychometric testing. Conclusions: This study provides support for the reliability, validity, and discriminative ability of the ten various short forms of ZBI for use among schizophrenia family caregivers, with the Ballesteros ZBI-12 and the Gort ZBI-7 endorsed as the best ones.
Background: The degree of informal caregiver involvement influences the self-management of individuals living with bipolar disorder (BD).; Objective: This article aims to provide a description of informal caregivers' learning experiences in self-management support of BD in order to guide professionals in tailoring future psychosocial and psychoeducational interventions.; Design: In-depth open interviews with 10 informal caregivers of patients with BD who followed treatment in the context of specialized outpatient bipolar care were conducted.; Results: Four learning phases emerged from the phenomenological analysis describing the informal caregivers learning process: (1) understanding BD, (2) overcoming the dilemmas in self-management support for individuals living with BD, (3) dividing tasks and responsibilities, and (4) acquiring a personal definition of self-management support for individuals living with BD.; Conclusion: By grasping the concept of BD, informal caregivers gradually learn how to overcome dilemmas resulting from living with someone with BD, and how to control the expression of emotions. They learn to reflect on the nature of conflicts and how to share the responsibilities of illness management with individuals living with BD and professionals. Mastering these skills eventually allows them to define and delimit their supporting informal caregiver role in the self-management of BD.; Practice Implications: Our findings provide information regarding the educational needs of informal caregivers to tailor counseling, and psychosocial and psychoeducational interventions in specialized outpatient care for individuals living with BD.
Patient-initiated violence may pose a significant risk to the strength and longevity of informal caregiving relationships in psychosis. We aimed to assess caregiver reports of patient-initiated violence in early psychosis and to examine the relationship between violent incidents and appraisals of caregiving, perceived mental wellbeing in caregivers and Expressed Emotion (EE) in the caregiving relationship. Eighty psychosis caregivers were recruited via Early Intervention (EI) psychosis services in London, United Kingdom. Caregivers were questioned about their experiences of patient-initiated violence during the semi-structured Camberwell Family Interview, and completed the Experience of Caregiving Inventory and the RAND SF-36 health survey in a cross-sectional experimental design. One third of the sample reported at least one incident of patient-initiated violence. Reports of violence were associated with poorer mental wellbeing scores amongst caregivers and more negative appraisals of caregiving. Patient-initiated violence also correlated with greater criticism and hostility expressed towards patients, and a rating of high EE in caregiver reports. The results underscore the need to ask explicitly and routinely about the physical safety of caregivers looking after someone with psychosis. Families should be directed towards appropriate interventions to help manage any risk of violence and the likely negative impact on the caregiving relationship.
Involving and supporting the family members and caregivers of people with mental illness is essential to high-quality mental health services. However, literature suggests that there is a lack of engagement between family members and mental health nurses (MHNs). Lack of knowledge among MHNs is often cited as one of the main reasons for this lack of engagement. The aim of this review was to explore the knowledge, skills and attitudes that are required by MHNs to enable to them to work more effectively with families affected by mental illness. A literature based critical review was used to access and review 35 papers in order to extract concepts that could inform the design of eLearning materials to assist MHNs advance their knowledge in this area. Two overarching themes were identified; 'Mental health problems and the family' and 'Working with the family'. From these themes, the knowledge, skills and attitudes required to work more effectively with families are described. The findings from this review provide a descriptive account of the knowledge skills and attitudes that are required for effective family work. In addition, the review provides an empirical foundation for education programmes in the area. Highlights • Mental health nurses often lack the knowledge and skills to support families. • Well-designed education programmes increase knowledge, reduce stress and burden. • Education programmes need to prepare mental health nurses more effectively with families.
Background: The variety of caregiver's needs of bipolar patients signifies the importance of performing dedicated interventions to help this group of caregivers based on the cultural conditions of the country in which they live; the present study therefore seeks to address this issue through a different method. Methods: The families of 28 patients with bipolar disorder type 1 who were treated for at least two months by a single psychiatrist gradually entered the study over a six-month period. They received the phone number of the psychiatrist in attendance as soon as the patient was in remission according to the same psychiatrist's interview. A total of 1908 texts were sent and received and each family sent an average of 68.14 text messages during the three years, with the minimum being 40 and the maximum 83. All the text messages were transcribed verbatim and were evaluated by three faculty members through the qualitative content analysis method. Results: In this study we found three themes and there were some codes in each theme. 1. The first theme was "Training" which the caregivers requested advice about symptoms and tests, the course of the disease, assurance, medication side-effects and their management, how to stop smoking, how to control high-risk behaviors and double checking appointments with the physician, making for a total of 1079 text messages received. 2. The second theme was "Reporting" which contained a description of emergency symptoms and requesting advice, reporting response or no response to the medications, reporting medication adherence and dosage taken. 3. The third theme: "The expression of feelings" including the expression of gratitude, saying congratulations on national and other celebrations and expressing anger and hatred. Conclusion: Overall, the caregivers of patients with bipolar disorder have many needs; meeting these needs affects the patients' outcome and the caregivers, but requires a greater attention by the healthcare team and it is necessary for these needs to be evaluated in the context of each distinct country.
Objective The aims of this study were to quantify Australian federal and state government expenditure on mental health carer services for 2014-15, map the types of services being provided and explore how funded service types compare with the evidence base for the outcomes of these carer services. Methods Web searches were conducted to identify in-scope mental health carer services in Australia funded by federal and state and territory governments. Funding estimates were confirmed where possible with available government and carer organisation contacts. A literature search was conducted for reviews of studies investigating mental health carer service outcomes. Results In 2014-15, the estimated Australian national, state and territory government expenditure on mental health carer services was approximately A$90.6 million. This comprised A$65.6 million in federal expenditure and A$25.0 million in state and territory expenditure. Most funding streams provided respite and psychoeducation. The literature showed positive carer outcomes for psychoeducation and intensive family interventions. Evidence was lacking for the effectiveness of respite services. Conclusions These findings suggest a mismatch between what is known about the extent to which different service types deliver positive carer outcomes and the current allocation of funds across Australia's mental health system. This study also highlights the fragmentation of the mental health carer services system, supporting the need to streamline access.
A modest association can be found between people with a schizophrenia spectrum diagnosis (psychosis) and perpetrating acts of violence. When a person with psychosis does engage in violence, it is their informal carers, when compared to those from the general population, who are more likely to be the targets, and violence will often occur within the family home. Despite the importance of carer support for improving patient outcomes, our understanding of how carers are impacted by patient initiated violence in psychosis remains limited. This paper reviews literature documenting the effects of patient-initiated violence in psychosis on carer functioning. The review comprised searches of Medline, PsychInfo, Embase, and Web of Science databases and the hand searches of reference lists from relevant published papers. The review was limited to English language publications from inception to 11th September 2017, and where carer experiences following reports of violence from patients with psychosis were specifically recorded. Data from 20 papers using mixed methodologies were reviewed. Patient violence in psychosis was linked to poorer carer outcomes, including carer reports of burden, trauma, fear, and helplessness. There is, however, a significant need for further studies to systematically quantify the impact and correlates of patient initiated violence on psychosis caregivers, and improve prevention.
Aims: At first-episode psychosis (FEP), many patients will be routed within familial networks and supported by informal carers who are predominately close family members such as parents. Carer burden, distress and poorer coping styles are associated with different illness beliefs. The current study sought to examine the impact and acceptability of a 3 session, cognitively informed, group intervention targeting illness beliefs previously linked to distress and poorer caregiving experiences in FEP carers.; Methods: Carers attending a routine FEP service were invited to attend the group intervention and completed a measure of illness beliefs at baseline and post intervention.; Results: Data on 68 carers with complete datasets are presented. Carers were predominately females (64.2%). Group attendance was linked to positive improvements in carer baseline beliefs about the negative consequences of the illness for the patient and themselves, attributions of blame about the illness to the patient and themselves and their overall understanding about the illness. Significant improvements in their understanding of the illness timeline and course, and confidence in dealing with difficulties were also identified.; Conclusions: A cognitively informed group approach to targeting the less adaptive illness beliefs reported by FEP carers may offer an effective and acceptable pathway to facilitate their understanding of the illness and adjustment. Further studies using controlled designs are required.
Background: Psychotic disorders are severe mental health conditions that adversely affect the quality of life and life expectancy. Schizophrenia, the most common and severe form of psychosis affects 21 million people globally. Informal caregivers (families) are known to play an important role in facilitating patient recovery outcomes, although their own health and well-being could be adversely affected by the illness. The application of novel digital interventions in mental health care for patient groups is rapidly expanding; interestingly, however, far less is known about their role with family caregivers.; Objective: This study aimed to systematically identify the application of digital interventions that focus on informal caregivers of people with psychosis and describe their outcomes.; Methods: We completed a search for relevant papers in four electronic databases (EMBASE, MEDLINE, PsycINFO, and Web of Science). The search also included the Cochrane database and manual search of reference lists of relevant papers. The search was undertaken in accordance with Preferred Reporting Items for Systematic Reviews and Meta-Analyses reporting guidelines.; Results: The search identified 9 studies derived from 8 unique datasets. Most studies were assessments of feasibility and were undertaken in the United States. Interventions were predominately Web-based, with a focus on improving the caregivers' knowledge and understanding about psychosis.; Conclusions: This study offers preliminary support for the feasibility and acceptability of digital interventions for psychosis in informal caregiver populations. However, the findings underpin a clear need for greater development in the range of caregiver-focused digital approaches on offer and robust evaluation of their outcomes. The use of digital approaches with caregiver populations seemingly lags someway behind the significant developments observed in patient groups.
Family members play an important role in caregiving with more emphasis on early intervention for people suffering from mental illness. Using both quantitative and qualitative methods, this study examines the effects of a community mental health intervention project (CoMHIP) on burdens of caregivers who have family members with suspected mental illness. Results showed that family caregivers’ burden and psychological stress level had been reduced (p < .001). The caregivers subjectively experienced a significant reduction in stress regarding the caregiving subscales, supervision, tension, worrying and urging after seeking CoMHIP service. Findings for the study have implications on social work interventions regarding family caregiving of people with suspected mental health problems.
During later life, older adults may be caregiving for people with late-onset mental health issues. The situation can alter family relationships and cause role transitions. This article offers three late-life mental health scenarios that require spouses or partners, adult children, and-or others to deal with an older adult family member's mood and behavior changes. Through case examples, the author explores geriatric depression, complicated grief, and provision of extended care for persons with severe mental illness, and highlights support for older care providers.
Introduction: In the past, patients with mental disorders were often isolated, but these patients now-a-days enter the society, as therapeutic interventions have advanced. Family members play an important role in the life of many adults with mental disorders and are under considerable amounts of stress that may affect caregiver's physical health, quality of life and resilience. Aim: The present study aimed to determine the relationship between the resilience and quality of life in family caregivers of patients with mental disorders. Materials and Methods: The present cross-sectional, correlational, descriptive study was conducted on 238 family caregivers of patients with mental disorders. The Short Form Health Survey (SF-36) was used to measure the quality of life and the Connor and Davidson Resilience Scale was used to measure resilience in the participants. The SF-36 consists of two general dimensions and eight domains of health and the resilience scale consists of 25 items. The data obtained through the questionnaires were analysed in SPSS version 16.0 using Pearson's correlation test. Results: The majority of the family caregivers were the patients' mothers. The results showed a significant direct relationship between resilience and quality of life (p<0.001, r=0.40). Conclusion: Resilience is a personal resource that affects quality of life directly. Resilience can enhance quality of life. The design and implementation of programs to enhance resilience and improve quality of life in family caregivers in line with the emerging needs of this group are therefore necessary.
Background and Objective: Psycho-education is an intervention integrating psychotherapeutic and educational strategies. Whilst carer psycho-education is known to aid in psychiatric disorders, at present there is no known tool to assess the degree to which this is routinely provided by mental health professionals. Our objective was to develop and validate a tool, in English, which assesses psycho-education of carers of psychiatric patients in Pakistan. Methods: A questionnaire was generated in English. It was pretested on twenty male and female carers and was refined to attain a more reliable version. Sixty bilingual male and female primary carers, who were fluent in English, and had been in a care-giving role for more than three months were requested to complete the developed Questionnaire for the Assessment of Psycho-Education of Carers (APEC) at Fatima Memorial Hospital Psychiatry Out-patient department within a period of four months from December, 2017 to April, 2018. Carers were identified via patients presenting to a psychiatric OPD. Responses were analyzed for reliability and test retest consistency using Cronbach's alpha analysis, Intraclass correlation coefficients, factor analysis and Paired t-test. Results: APEC was found to be easily understandable and capable of adequately assessing aspects of psycho-education. A high degree of internal consistency was demonstrated on cronbach's alpha analysis. Cronbach's α coefficient for various domains was sufficiently high ranging from 0.76 to 0.960. Similarly, domains of (APEC) were highly correlated. Test-retest reliability was assessed by computing the correlation between Visits 1 and 2 scores. Conclusion: The developed questionnaire can adequately assess psycho-education of primary carers in mental health settings.
In many parts of the world family members are the primary caretakers of persons with mental illness. The chronic stress associated with being a caregiver for an individual with schizophrenia can result in a variety of emotional responses, influenced by religion, spirituality and different styles of coping. The aim of this study was to assess patterns of coping, and spiritual and religious beliefs among caregivers of patients with schizophrenia. Consecutive patients with schizophrenia and their caregivers attending an outpatient clinic were recruited. Patients were rated on the Positive and Negative Symptom Scale. The Royal Free Interview for Religious and Spiritual Beliefs, Modified Jalowiec Coping Scale and General Health Questionnaire-12 were administered to caregivers. Socio-demographic details of carers and clinical details of patients were recorded. Caregivers of patients with schizophrenia were found to cope in a variety of ways; the most useful and frequently used was the optimistic style of coping. While religious beliefs had an influence, factors significantly associated with coping included caregiver education and employment and patient psychopathology. Providing support to carers of patients with schizophrenia and enhancing their coping is an essential part of quality clinical care. Spirituality and religion can serve as a positive coping strategy.
Objectives: To compare depression and psychological well-being between caregivers of schizophrenic patients and non-caregivers and to study the burden of caregiving as a relative risk for depression and psychological well-being.; Methods: This cross sectional comparative study was conducted at International Islamic university Islamabad from January to September 2017. Fifty informal caregivers of schizophrenic patients from 19 to 55 years of age were included in the study. The control group consisted of age and socio-economic status matched healthy volunteers who did not have any psychological or medical patient at home needing care and assistance. For measurement of study variables i.e., burden of caregiving, depression and psychological well-being, instruments used were Zarit Burden Interview (ZBI), The Beck Depression Inventory (BDI) and Warwick-Edinburgh Mental Well-Being Scale (WEMWBS) respectively.; Results: Results were analyzed using MANOVA followed by One-Way ANOVA. Findings indicated that informal caregivers of schizophrenia have greater depression and poor psychological well-being in comparison to the non-caregiver controls. Association of caregiving burden with psychological well-being and depression was calculated using Chi Square test and relative risk.; Conclusion: Caregiving adversely affects informal caregivers' mental health and wellbeing. Informal caregiving is a burden for the caregivers; health status of family members involved in caregiving should be routinely assessed to enhance their health-related quality of life.
Objective: To evaluate the satisfaction of family caregivers with a mental health inpatient service in Brazil.; Methods: This was a cross-sectional study with a quantitative approach. A sample of 80 caretaking family members answered the abbreviated version of the Brazilian Mental Health Services' Family Satisfaction scale (SATIS-BR) and a sociodemographic questionnaire. Categorical variables were expressed as frequencies and percentages and quantitative variables as means and standard deviations. Interactions among variables and indexes of the scale were analyzed using the Student's t test, Pearson correlation coefficient and analysis of variance.; Results: The results showed a high mean overall satisfaction score when considering the categorization of the items of the scale, with higher satisfaction indexes in the 'Treatment results' subscale and lower ones in the 'Reception and competence of staff' and 'Privacy and confidentiality' subscales. In the comparison of the samples studied, greater scores were observed in general satisfaction and in factors in the medical residency care model than in the attending psychiatrist model. There were no significant differences in terms of family member satisfaction in relation to sociodemographic variables.; Conclusion: Family member satisfaction was high. The need for improvement in aspects related to the infrastructure of services was evident. This paper underlines the importance of continuous and regular evaluations of the services provided, focusing on the satisfaction of users and family members in order to better understand the factors that contribute towards the quality of care provided.
While involvement of family caregivers can play an important role in the recovery process of persons with serious mental illness (SMI), family caregivers often endure poor health and mental health issues due to caregiving-related distress. These challenges may be exacerbated for Vietnamese American families due to cultural values (e.g., familism and stigma). This qualitative exploratory study examined how Vietnamese American family caregivers of persons with SMI describe their caregiving experience. Using convenience and snowball sampling, the study recruited 21 participants who took part in two Vietnamese-language focus groups. Key findings of the study addressed three themes: (1) the influence of cultural and religious values on caregiving and mental health; (2) the negative impact of caregiving on caregivers’ wellbeing; and (3) the stigma attached to mental illness. The study offers useful insights to assist mental health practitioners in tailoring culturally appropriate and effective services for Vietnamese caregivers.
Objective: Informal care, the provision of unpaid care to dependent friends or family members, is often associated with physical and mental health effects. As some individuals are more likely to provide caregiving tasks than others, estimating the causal impact of caregiving is difficult. This systematic literature review provides an overview of all studies aimed at estimating the causal effect of informal caregiving on the health of various subgroups of caregivers.; Methodology: A structured literature search, following PRISMA guidelines, was conducted in 4 databases. Three independent researchers assessed studies for eligibility based on predefined criteria. Results from the studies included in the review were summarized in a predefined extraction form and synthesized narratively.; Results: The systematic search yielded a total of 1,331 articles of which 15 are included for synthesis. The studies under review show that there is evidence of a negative impact of caregiving on the mental and physical health of the informal caregiver. The presence and intensity of these health effects strongly differ per subgroup of caregivers. Especially female, and married caregivers, and those providing intensive care appear to incur negative health effects from caregiving.; Conclusion: The findings emphasize the need for targeted interventions aimed at reducing the negative impact of caregiving among different subgroups. As the strength and presence of the caregiving effect differ between subgroups of caregivers, policymakers should specifically target those caregivers that experience the largest health effect of informal caregiving.;
Responsive support systems, designed and promoted by policy makers, are critical in supporting family caregivers. The purpose of this study was to explore viewpoints of service providers in supporting family caregivers of mental health patients in Iran. In this qualitative study, a purposive sample of 29 service providers and policy makers consented to participate in semi-structured interviews. Data were analyzed through qualitative content analysis and three main categories and seven sub-categories were identified. The main categories were: interpersonal collaboration, intra-organization collaboration and inter-sectorial collaboration. A common theme in this study was that service providers play a key role in coordinating responsive support services for Iranian family caregivers of mental health patients across all levels. The increasing complexity of the health care system and resource limitations have created complex problems, which require the use of participatory approaches by the various specialties, disciplines and departments to provide complementary services and mutual support. This approach is the best way of ensuring that service users receive the most relevant services from the right service providers in the right place as and when needed.
This paper explored the support needs of family caregivers of people living with a mental illness in Iran. This descriptive study focused on the experiences of 20 family caregivers as well as the views of 29 professional support workers through individual face-to-face interviews. From these interviews three key themes emerged in regards to the care needs of family caregivers: (i) social support; (ii) emotional support; and (iii) safety and security. These themes highlighted the complex role of caring for a family member with a mental illness and the emotional, social and economic challenges that these caregivers experienced as a result. Iranian caregivers garnered support not only from other family members but also from neighbors and religious leaders but lacked the much needed respite care found in western countries. This research study highlighted the importance of ensuring that the caregivers themselves receive appropriate and adequate support to fulfill their caregiving role.
Background: Family caregivers of patients with mental disorders play the most important role in the care of psychiatric patients (PPs) and preventing their readmission. These caregivers face different challenges in different cultures. We conducted this study to determine the challenges of caregivers of patients with mental disorders in Iran. Materials and Methods: This study is a narrative review with a matrix approach conducted by searching electronic databases, SID, IRANMEDEX, MAGIRAN, PUBMED, SCOPUS, Web of Sciences, from February 2000 to 2017. Searched keywords include challenges, family caregivers of psychiatric patient, family caregivers and psychiatric patient, mental illness, families of psychiatric patient, and Iran. One thousand two hundred articles were found in English and Farsi, and considering inclusion and exclusion criteria, 39 articles were examined. Results: The results of the studies show that not meeting the needs of caregivers, burnout and high burden of care, high social stigma, low social support for caregivers, and low quality of life of caregivers were among the most important challenges faced by caregivers. Conclusions: Despite the efforts of authorities in Iran, family caregivers of patients with mental disorders still face challenges. Therefore, the need for all-inclusive support for family caregivers of patients with mental health problems is necessary.
Background: The consequences and high costs of psychiatric disorders impact family caregivers greatly. Health services should identify and provide accessible support programs to facilitate effective caregiver coping.; Purpose: The aim of this study was to determine the effectiveness of a theory-of-planned-behavior-based problem-solving training program on the coping styles of family caregivers of psychiatric inpatients.; Methods: In this two-group, randomized control trial, 72 family caregivers were randomly assigned to either a control group receiving standard care or an intervention group receiving a training program (eight sessions over 4 weeks). Demographic information was recorded at baseline, and the Coping Inventory for Stressful Situations was administered to both groups at baseline, immediately postintervention, and 1-month follow-up.; Results: Immediately after the intervention, the intervention group earned significantly higher task-oriented coping style scores (mean difference = 5.03, p = .015) than the control group, but no significant difference was detected between the two groups for either emotion- or avoidance-oriented coping style scores. At 1-month follow-up, the intervention group earned significantly higher scores than the control group for task-oriented (mean difference = 8.56, p < .001) and emotion-oriented (mean difference = 7.14, p = .002) coping styles. No improvement in avoidance-oriented coping style at the postintervention or follow-up time points was detected.; Conclusions: Implementation by nurses and other health professionals of problem-solving training programs that are based on the theory of planned behavior is recommended to strengthen the use of task- and emotion-oriented approaches that help family caregivers of psychiatric patients better cope with stress.
As a worldwide phenomenon, no one is immune - mental illnesses affect people of all ages, cultures, educational and income levels. Burden of caregivers of people with bipolar illness reported moderate or great distress in at least in one burden domain. Hence the descriptive co-relational study has been conducted to assess the burden, social support and family wellbeing among caregivers of mentally ill patients in Mansik Aarogayashala , Gwalior (M.P.). Aim of the study was to determine the caregivers' burden as measured by caregivers burden, social support, family well being and find the relationship between care giver burden and social support, care giver burden and family well being and social support and family well being. By using purposive sampling technique collects total 50 samples. The data was collected using demographic proforma, caregivers' burden assessment scale, social support scale and family wellbeing scale by applying the questioning technique. Results revealed that, Maximum number of caregivers had moderate burden (60%), low social support (82%) and perceived high level of wellbeing (48%); 36% had mild burden, 16% had moderate social support and 46% perceived moderate level of wellbeing. Caregiver burden had negative correlation with social support(r=-0.344, P < 0.005) and family wellbeing (r= -0.404, P < 0.005) while there was positive correlation between social support and family wellbeing(r=0.447, P < 0.005). Study concluded that Caregiver burden had a significant negative relationship as social support and family wellbeing decreased, caregiver burden increased. But there was a positive relationship between social support and family wellbeing, family wellbeing increased with increased social support.
Purpose of the Study: Ambivalence has been described as simultaneous positive and negative emotional experiences. Although ambivalent feelings are often reported by dementia family caregivers, the effect of these feelings on caregivers' mental health has not been studied. Furthermore, the measurement of ambivalence specific to caregiving situations has not been studied. The aims of this study are to analyze the psychometric properties of the Caregiving Ambivalence Scale (CAS) and, drawing upon the stress and coping model, to test whether ambivalent feelings significantly contribute to caregivers' distress. Design and Methods: Participants were 401 dementia family caregivers. Face-to-face interviews were conducted which included measures of ambivalence, depressive (CES-D) and anxious symptomatology (POMS), stressors (disruptive behaviors subscale of the RMBPC), and sociodemographic information. Results: Results from exploratory, parallel, and confirmatory factor analyses suggest that the CAS has a unidimensional structure, explaining a 64.26% of the variance of ambivalent feelings. Good reliability and validity indexes were found, including a Cronbach's alpha of .86. The results revealed significant (p < .01) positive associations with depressive and anxious symptomatology, and frequency and reaction to disruptive behaviors. Ambivalent feeling scores significantly contributed to the explanation of caregivers' depressive and anxious symptoms after controlling for sociodemographic and stressor variables. Implications: The CAS shows good psychometric properties that recommend its use as a measure of ambivalent feelings in caregivers and appears to be a relevant variable for understanding caregivers' mental health.
Background There is limited evidence for the acceptability of training for mental health professionals on service user- and carer-involved care planning. Aim To investigate the acceptability of a co-delivered, two-day training intervention on service user- and carer-involved care planning. Methods Community mental health professionals were invited to complete the Training Acceptability Rating Scale post-training. Responses to the quantitative items were summarized using descriptive statistics (Miles, ), and qualitative responses were coded using content analysis (Weber, ). Results Of 350 trainees, 310 completed the questionnaire. The trainees rated the training favourably (median overall TARS scores = 56/63; median 'acceptability' score = 34/36; median 'perceived impact' score = 22/27). There were six qualitative themes: the value of the co-production model; time to reflect on practice; delivery preferences; comprehensiveness of content; need to consider organizational context; and emotional response. Discussion The training was found to be acceptable and comprehensive with participants valuing the co-production model. Individual differences were apparent in terms of delivery preferences and emotional reactions. There may be a need to further address the organizational context of care planning in future training. Implications for practice Mental health nurses should use co-production models of continuing professional development training that involve service users and carers as co-facilitators.
PURPOSE To examine prediction power of personality traits, expressed emotion, and coping strategies on caregivers' burden. DESIGNS AND METHODS Cross-sectional descriptive correlational design was used to collect data from 196 caregivers using the Self-Administered Questionnaire from Jordanian caregivers of patients with serious mental illness. FINDINGS Jordanian caregivers had a moderate-to-severe burden level (M = 47.1, SD = 11.5). Burden had a significant negative relationship with coping (r = -.15, p = .04) and significant positive relationship with personality dysfunction (r = .16, p = .021). Emotional expression, coping, and personality were found to be significant predictors of burden (F = 5.16, p = .002). PRACTICE IMPLICATIONS Mental health professionals need to address family caregivers in their plans of care.
Carers' views about their role in recovery are under-researched, and studies investigating their needs are underdeveloped. In this study, participatory action research was used; I was supported by a steering group of eight stakeholders to co-produce a training programme on recovery and data collection methods to explore the meaning of recovery for carers. The programme was delivered by me, an expert-by-experience with a diagnosis of schizophrenia, and a carer of her son with a similar diagnosis, to a group of eleven participants. Mainly qualitative data was collected together with supplementary quantitative socio-demographic data from the participants. Selected findings based on the carers' discussions are presented which focus on how the relationship between carers and professionals can most effectively facilitate service user recovery. Issues of information exchange between carers and professionals and the impact of patient confidentiality are highlighted, the nature of recovery practice is considered, and the participants' need to be regarded as 'experts' is addressed. A conceptual model of service design based on a recovery-oriented 'triangle of care' is presented. The potential implementation of this model in the current UK mental health service context is considered with the need for co-production between all stakeholders to ensure its development.
Hospitalisation of a parent with acute mental health problems impacts the consumer, their extended family/carers and children. Mental health nurses are at the forefront of promoting recovery for consumers in an acute inpatient setting. Recovery-oriented care can include provision of family-focused care which supports recovery of the parent-consumer and their family members and contributes to prevention of intergenerational mental illness. The aim of this narrative literature review was to explore existing knowledge regarding the experiences, care and support needs of parent-consumers, their family members/carers and children during the parent's acute mental health hospitalisation. It also aims to explore existing knowledge about the practices of mental health nurses providing care to this consumer group, to inform future healthcare practice and strengthen parent, child and family outcomes. Nineteen published studies addressed the review questions. In the context of hospitalisation, the majority of research regarding parenting with a mental illness is focused on mothers. Parents reported experiencing stigma during their hospitalisation. Separation from children was a concern for parents and their extended family, but admission provided an opportunity for the parent to receive treatment and for the family to receive support. Mental health nurses did not always identify parental status on admission. When parental status was identified, nurses reported issues regarding logistics and practicalities of using family rooms, children visiting the unit, and their own professional knowledge and organisational support regarding familyfocused care. Implications for practice are identified, highlighting how mental health nurses can develop their practice to support the recovery of parent-consumers.
Introduction Mental health service policy stipulates that family carers be involved in care planning. Aim To identify families’ experiences of care planning involvement in adult mental health services. Method An integrative review where electronic databases and grey literature were searched for papers published between 01 January 2005 and 10 February 2016. Results Fifteen papers met the inclusion criteria. Thematic analysis generated three themes: (1) families’ experience of collaboration, (2) families’ perceptions of professionals and (3) families’ impressions of the care planning process. Collaborative decision-making is not regularly experienced by families with an ‘us’ and ‘them’ divide, perpetuated by a lack of communication, confidentiality constraints and a claim of ‘insider knowledge’ of service users. When involved, families perceive care planning to be uncoordinated and that their lived experiences are not always appreciated. Discussion Families need to be valued, empowered and engaged in care planning and the partnership distance be addressed. Accommodating the views of family, service user and professionals is preferable but not always possible. Our findings suggest that the key element for professionals is to value all ‘insider knowledge’ where possible. Implications for Practice Services should develop written information on confidentiality for families and facilitate open communication concerning their involvement in care planning.
Experience-based co-design (EBCD) is a service design strategy that facilitates collaborative work between professional staff and service users toward common goals. There is a lack of published examples of it in relation to family carer engagement within a mental health context, and little research exploring the mechanisms behind successful implementation. The aim of this study was to explore the processes that facilitated EBCD with carer involvement. The study adopted a grounded theory–informed approach involving interviews with 16 participants of an existing EBCD project in an English National Health Service (NHS) trust, reflecting multiple stakeholders. EBCD can be thrown off track in two ways: conflict and getting “bogged down.” Leadership by project and design-group leaders could return group cohesion and maintain project momentum. The developed model reflects key processes. Future research should examine EBCD projects with similar ranges of stakeholders and in contexts with different levels of organizational change.
BACKGROUND: Previous research into improving patient safety has emphasised the importance of responding to and learning from concerns raised by service users and carers. Expertise gained by the experiences of service users and their carers has also been seen as a potential resource to improve patient safety. We know little about the ease of raising concerns within mental health services, and the potential benefits of involving service users and carers in safety interventions. This study aimed to explore service user and carer perceptions of raising safety concerns, and service user, carer and health professional views on the potential for service user and carer involvement in safety interventions. METHODS: UK service users, carers and health professionals (n=185) were recruited via social media to a cross-sectional survey focussed on raising concerns about safety issues and views on potential service user and carer participation in safety interventions. Data were analysed using descriptive statistics, and free text responses were coded into categories. RESULTS: The sample of 185 participants included 90 health professionals, 77 service users and 18 carers. Seventy seven percent of service users and carers reported finding it very difficult or difficult to raise concerns. Their most frequently cited barriers to raising concerns were: services did not listen; concerns about repercussions; and the process of raising concerns, especially while experiencing mental ill health. There was universal support from health professionals for service user and carer involvement in safety interventions and over half the service users and carers supported involvement, primarily due to their expertise from experience. CONCLUSIONS: Mental health service users and carers experience difficulties in raising safety concerns meaning that potentially useful information is being missed. All the health professionals and the majority of service users and carers saw potential for service users and carer involvement in interventions to improve safety, to ensure their experiences are taken into consideration. The results provide guidance for future research about the most effective ways of ensuring that concerns about safety can be both raised and responded to, and how service user and carer involvement in improving safety in mental health care can be further developed.
More than 1 million people who are caring for children and older relatives are at a significantly higher risk of mental health problems and more likely to be struggling for money than the general population, official data has revealed.
The “sandwich generation” who find themselves squeezed between older and younger dependents account for 1.3 million people, according to the Office for National Statistics (ONS). It found the more care people give to both older and younger relatives simultaneously, the more likely they are to report symptoms of mental ill health.
Background: Current Australian mental health policy recommends that carers should be involved in the provision of mental health services. Carers often provide intensive support to mental health consumers and gain detailed insight into their lives. As such, carers could make valuable contributions to well-informed decisions about mental health consumers' use of antipsychotic medication. Objectives: The aim of this study was to explore carers' participation in antipsychotic medication decision making. Methods: Snowball sampling was used to enrol 29 carers in this study. Of these carers, 19 participated in semi-structured interviews, and ten participated in a focus group. Data were analysed thematically. Results: Four main themes emerged from the analysis. The findings highlighted that carers typically received little or no information about antipsychotic medication. Carers commonly addressed the shortfall in information by obtaining additional information through online sources or distributing among carer networks material that they had developed themselves. Almost all carers emphasised that they should be involved in decisions about antipsychotic medication, but noted that they were typically excluded. The lack of involvement in medication decisions was a source of frustration, as carers could contribute saliently through sharing detailed knowledge about mental health consumers' lives, address communication gaps that resulted from disjointed care and improve communication between health professionals and mental health consumers. Conclusion: Health professionals could consider improving the extent to which they collaborate with carers in medication decisions.
Academic researchers are increasingly asked to engage with the wider world, both in terms of creating impact from their work, and in telling the world what goes on in university research departments. An aspect of this engagement involves working with patients, carers or members of the public as partners in research. This means working with them to identify important research questions and designing studies to address those questions. This commentary was jointly written by two researchers and people with relevant caring experience for this special issue. It brings to the forefront the concerns of carers who are also involved in research as partners. The aim is to highlight their perspectives to inform future research, policy, and practice.
As mental health (MH) care has shifted from institutional settings to the community, families and friends are responsible for providing the majority of the care at home. The substantial literature on the adverse effects experienced by caregivers has focused mainly on psychological morbidity. Less attention has been paid to how caregivers for persons with MH disorders interact with larger social systems and the impacts of factors such as financial strain, lost time from leisure activities, and the availability of health and social services. Method: a scoping review of MH and other caregiver questionnaires published between 1990 and 2016 to determine whether they addressed four key domains: caregiver work demands, resource needs, resource utilisation and costs. A range of health and social care databases were searched, including MEDLINE and Health and Psychosocial Instruments. After screening for relevance and quality, our search identified 14 instruments addressing elements related to one or more of our domains. Because these instruments covered only a small portion of our domains, a second targeted search was conducted of the general care‐giving literature and consulted with experts, identifying an additional 18 instruments. A total of 32 questionnaires were reviewed, 14 specific to care‐giving for mental health problems and 18 for other health conditions. Our search identified instruments or items within instruments that assess constructs in each of our domains, but no one instrument covered them completely. Additionally, some constructs were evaluated in detail and others only addressed by single items. While these instruments are helpful for moving measurement beyond the psychological impacts of care‐giving, our results serve only as an initial guide. Additional methodological work is needed to more comprehensively measure the impact of care‐giving for individuals with MH disorders and to contribute to the development of more meaningful and effective policies and programmes.
Objectives: Little is known regarding the effect that caring for an individual with Mild Cognitive Impairment (MCI) has on health-related quality of life (HRQOL). The authors sought to identify the most important aspects of HRQOL related to caring for an individual with MCI. Methods: Six focus groups were conducted with caregivers of individuals with MCI (n = 32). Qualitative frequency analysis was used to analyze the data. Results: Findings indicated that caregivers most frequently discussed social health, including changes in social roles and an increased need for social support (51.2% of the total discussion). This was followed by mental health concerns (37.9%) which centred on anger/frustration, and a need for patience in the caregiving role, as well as caregiver-specific anxiety. Other topics included physical health (10.0%; including the impact that stress and burden have on medical heath), and caregivers’ cognitive health (0.9%; including memory problems in relation to caregiver strain, sleep disruption, and cognitive fatigue). Conclusions: Findings illustrate the multiple domains of HRQOL that are affected in individuals providing care for someone with MCI. Moreover, the findings highlight the need for extending support services to MCI caregivers, a group that is typically not offered support services due to the ‘less severe’ nature of an MCI diagnosis.
Background: An informal care-giver is generally an unpaid individual who looks after the personal and medical needs of the patient. India being a country of traditions and family values, this informal care-giver is usually a family member. These care-givers, being untrained in this job undergo tremendous stress. Available research studies the burden individually in the relatives of chronically medically ill patients and those of psychiatrically ill patients. Furthermore the previous research targets the burden in individual diseases. This study stands out as it makes a comparison between the two broad groups, taking into account almost all possible chronic diseases in each group. Methods: This is a cross-sectional analytical descriptive study that was conducted on the family caregivers of chronically medically ill and psychiatrically ill patients, using the Caregiver's Burden Scale. Data were analyzed by SPSS 20 statistical software and Pearson correlation coefficient tests. Significant difference between area of caregiver burden of medicine and psychiatric patients was tested using relative deviate 'Z' of SEDM test at 5% level of significance. Result: There is a significant difference between each category of Caregiver's Burden Scale among chronically medically ill and psychiatrically ill patients. (P < 0.05). Conclusion: The outcome of this study may help the health care providers in designing stress relief programs for primary care-givers. Overall this study may help better delivery systems of care for both the chronically medically ill as well as psychiatrically ill patients, by proper specific framing and psycho education programs for the caregivers of specific chronic illnesses.
Cigarette smoking poses significant health burdens for people with mental illness. They die sooner than they should, and smoking is a major contributor to their high rates of morbid chronic physical health conditions and early mortality, compared to the general population. Family carers provide important support to people with mental illness. However, family carers' perspectives of smoking by their family members with mental illness are largely absent from the research literature and from practice, despite smoking rates remaining high and quit rates remaining low for this population. Little is known about how family carers are or could be involved in supporting people with mental illness who smoke to stop smoking. This paper aims to provide a discussion of the opportunities for family carers to support their family member's smoking cessation and a discussion of our preliminary research on this topic. From the available literature, it appears that family carers are well placed to support smoking cessation for this population; however, they struggled physically, philosophically, and emotionally with perceived responsibilities involving their family member's smoking and the caring role. They felt isolated and asserted that there was limited support from service providers to assist them. The authors concluded that family carers are important agents within the person's immediate environment who could help them to improve their smoking cessation success. This suggests also that mental health services and other health service providers could benefit from including family carers in their efforts to support smoking cessation for people with mental illness who smoke.
Aims and Objectives To elicit the perspectives of carers of people with mental illness regarding access to, and experience with, physical healthcare services for mental health consumers. Background People diagnosed with mental illness have increased risks of physical illness and earlier death, problems able to be addressed through better physical health services. Carers of people with mental illness play a significant role in the mental healthcare system yet research examining their views is lacking. Design Qualitative exploratory. Methods In-depth interviews were conducted with 13 mental health carers. They were asked to describe their views and experiences pertaining to the physical health and availability of physical health care for the people they care for. Data were analysed using the framework of Braun and Clarke. Results Analysis of carer responses identified two important themes: responsiveness and access, and a shortage of care coordination. Carers felt alienated from physical healthcare providers and were compelled to fill gaps in available care through persistence in ensuring access to physical healthcare services. Conclusions The findings identify carers as key stakeholders in the physical health care for the people they care for. Their involvement in accessing and coordinating care provides vital perspective on health service capacity, which requires further consideration in the practice and research domains. Relevance to clinical practice Carers of people diagnosed with mental illness are crucial to the effective delivery of mental health services. Their perspectives must be central to their research agenda and contribute to the development of initiatives to improve clinical practice and promote improved physical health care.
Background: Preventing hospitalization and improving event-free survival are primary goals of heart failure (HF) treatment according to current European Society of Cardiology guidelines; however, substantial uncertainty remains in our ability to predict risk and improve outcomes. Although caregivers often assist patients to manage their HF, little is known about their influence on clinical outcomes. Aims: To quantify the influence of patient and caregiver characteristics on patient clinical event risk in HF. Methods: This was a secondary analysis of data using a sample of Italian adults with HF and their informal caregivers (n = 183 patient–caregiver dyads). HF patients were followed over 12 months for the following clinical events: hospitalization for HF, emergency room visit for HF or all-cause mortality. Influence of baseline caregiver- and patient-level factors (patient and caregiver age; dyad relationship type; patient New York Heart Association (NYHA) Class, cognition, and comorbidities; and caregiver strain, mental health status, and contributions to HF self-care) on patient risk of death or hospitalization/emergency room use was quantified using Cox proportional hazards regression. Results: Over the course of follow up, 32.8% of patients died, 19.7% were hospitalized for HF and 10.4% visited the emergency room. Higher caregiver strain, better caregiver mental health status and greater caregiver contributions to HF self-care maintenance were associated with significantly better event-free survival. Worse patient functional class and greater caregiver contributions to patient self-care management were associated with significantly worse patient event-free survival. Conclusion: Considering caregiving factors together with patient factors significantly increases our understanding of patient clinical event risk in HF.
This study investigates changes in the mental and physical health of carers compared to non-carers over 10 years in a sample of New Zealanders aged 54–70. Mental health increased slightly over time for all participants but there was no difference in trajectory change based on carer status except for those who stopped caring. No significant differences in physical health or differences in trajectory change for physical health across time based on caregiver status were found. Results provide some support for a health selection bias into caring and the adaptation hypothesis of caring across time.
Caring for dependent relatives has become a normative challenge for families in the USA and throughout the world. The study objective was to examine the relationship of family caregiving responsibilities and the mental health and well-being of individuals, ages 18–24 years, referred to as emerging young adults. It was hypothesized that young adult caregivers with past and present responsibilities would report significantly more symptoms of depression and anxiety, have lower self-esteem, and use less adaptive coping styles than non-caregiving peers. The sample consisted of 353 undergraduates (81 past caregivers, 76 current/past caregivers, and 196 non-caregivers). Caregivers were also evaluated in terms of care recipients, duration of caregiving, tasks, and hours of effort. Caregivers had significantly higher levels of symptoms of depression and anxiety than non-caregivers. Research to clarify how caregiving interacts with other stressors in emerging young adults and influences behavioral health should be a priority.
In this study, the aims were to assess the mental health state of carers for patients with Alzheimer-type dementia (AD) according to stage of disease and to collect data with the aim of determining precautions to reduce the load of the patient and disease on the carer. The study included 120 patients with stages determined, according to the clinical dementia rating scale (CDR), and 120 patient relatives above the age of 18 who cared for these patients every day, for the whole day or part of the day, and who accepted participation in the research. This prospective and cross-sectional study performed a detailed neurological examination of patients, and after completing the “personal information form” with the interviewer, each patient had CDR and mini-mental test (MMSE) applied to determine stage of dementia and physical state. Carers first completed the “personal information form” and then had the short symptom inventory (SSI) applied. According to the stage of patients, there were significant differences determined in the points for all sub-scales belonging to the SSI of carers. As the disease stage increased, all sub-scale points for the SSI increased. With the transition of disease stages from 0.5–1 to stage 2, from stage 2 to 3, and with the inverse reduction in MMT scores, the points obtained by carers on the SSI sub-scales increased. This data shows that with progressing disease stage, the load on the carer increases and mental health begins to dysfunction.
Carer Peer Support Workers (CPSWs) are people who have lived experience as carers/family members of persons with a mental illness, and are employed to provide support to other carers/family members. This qualitative study aimed to explore carers' experiences within a community-based CPSW pilot program in an Australian mental health service. Semi-structured phone interviews were conducted with 20 carer participants in 2015, 5-10 months following their last contact with the service. Thematic analysis uncovered that carers were generally positive about the CPSW's emotional support, practical support, shared lived experience and mutual understanding, and the "ripple effect" the support had on service users. Some carers, on the other hand, felt that the support was unnecessary; either because they believed that it did not have a lasting effect, the focus should have been on the service user, or that they had previously received enough support. Nevertheless, the study highlighted how mental health services could best utilise and benefit from CPSWs. Moreover, to be most useful, the nature of the carer peer support work should be tailored to the specific needs of the carers; which may vary according to their culture, years of caring experience, and previous experiences with mental health services.
Background: The health of informal caregivers of adults with chronic conditions is increasingly vital since caregivers comprise a large proportion of supportive care to family members living in the community. Due to efficiency and reach, internet-based interventions for informal caregivers have the potential to mitigate the negative mental health outcomes associated with caregiving. Objective: The objective of this systematic review and meta-analysis was to examine the impact of internet-based interventions on caregiver mental health outcomes and the impact of different types of internet-based intervention programs. Methods: MEDLINE, EMBASE, CINAHL, PsycINFO, Cochrane, and AgeLine databases were searched for randomized controlled trials or controlled clinical trials published from January 1995 to April 2017 that compared internet-based intervention programs with no or minimal internet-based interventions for caregivers of adults with at least 1 chronic condition. The inclusion criteria were studies that included (1) adult informal caregivers (aged 18 years or older) of adults living in the community with a chronic condition; (2) an internet-based intervention program to deliver education, support, or monitoring to informal caregivers; and (3) outcomes of mental health. Title and abstract and full-text screening were completed in duplicate. Data were extracted by a single reviewer and verified by a second reviewer, and risk of bias assessments were completed accordingly. Where possible, data for mental health outcomes were meta-analyzed. Results: The search yielded 7923 unique citations of which 290 studies were screened at full-text. Of those, 13 studies met the inclusion criteria; 11 were randomized controlled trials, 1 study was a controlled clinical trial, and 1 study comprised both study designs. Beneficial effects of any internet-based intervention program resulted in a mean decrease of 0.48 points (95% CI –0.75 to –0.22) for stress and distress and a mean decrease of 0.40 points (95% CI –0.58 to –0.22) for anxiety among caregivers. For studies that examined internet-based information and education plus professional psychosocial support, the meta-analysis results showed small to medium beneficial effect sizes of the intervention for the mental health outcomes of depression (–0.34; 95% CI –0.63 to –0.05) and anxiety (–0.36; 95% CI –0.66 to –0.07). Some suggestion of a beneficial effect on overall health for the use of information and education plus combined peer and professional support was also shown (1.25; 95% CI 0.24 to 2.25). Overall, many studies were of poor quality and were rated at high risk of bias. Conclusions: The review found evidence for the benefit of internet-based intervention programs on mental health for caregivers of adults living with a chronic condition, particularly for the outcomes of caregiver depression, stress and distress, and anxiety. The types of interventions that predominated as efficacious included information and education with or without professional psychological support, and, to a lesser extent, with combined peer and psychological support. Further high-quality research is needed to inform the effectiveness of interactive, dynamic, and multicomponent internet-based interventions. Trial Registration: PROSPERO CRD42017075436; https://www.crd.york.ac.uk/prospero/display_record.php?RecordID=75436 (Archived by WebCite at http://www.webcitation.org/709M3tDvn)
Carers of people with mental illness frequently report interpersonal difficulties in their caring relationship, and experiential avoidance likely contributes to these problems. This study aimed to examine the relationship between experiential avoidance and eight interpersonal problem domains amongst lay mental health carers, and tested the mediating role of attachment anxiety and hostility. In addition, an alternative (reverse) mediation was tested in which experiential avoidance played the mediating role. A cross-sectional community-based sample of 145 mental health carers completed a questionnaire containing demographics and measures of interpersonal problems, experiential avoidance, attachment anxiety and hostility. Results indicated the relationship between experiential avoidance and interpersonal problems was fully mediated for the interpersonal problem domains of cold/distant and socially inhibited. Partial mediation was evident for the vindictive/self-centered, non-assertive, overly accommodating, self-sacrificing and intrusive/needy domains. No mediation occurred for the domineering/controlling domain. Alternative (reverse) model findings indicated partial/full mediation for the overly accommodating, domineering/controlling and vindictive/self-centered domains, and no mediation for the remaining five domains. Although tentative, findings suggest a mechanism for the relationship between experiential avoidance and particular domains of interpersonal problems that warrants further investigation. The importance of our data is highlighted by the burden and difficult relationships experienced by mental health carers, that requires targeted and effective psychological treatment.
The use of an Acceptance and Commitment Therapy (ACT) and Schema group intervention with the mental health carer population has a strong justification: 1) There is a theoretical rationale for the role of experiential avoidance and negative expectations of relationships (and associated cognitive fusion) in underpinning mental health carers interpersonal problems; 2) Correlational data demonstrates that the processes targeted by ACT (i.e. experiential avoidance) and Schema therapy (i.e. negative expectations of relationships) are associated with mental health carer's experiences of interpersonal problems; 3) Existing studies demonstrate positive results for ACT based interventions with caregiver populations; 4) Multicomponent carer interventions with two conceptually different approaches have achieved more positive outcomes in prior studies. The current study aims to pilot an ACT and Schema group intervention for mental health carers’ interpersonal problems, examining acceptability and conducting preliminary assessment of effectiveness.
Research has shown that young people who care for parents and relatives (young carers and young adult carers) are at greater risk of mental and emotional difficulties and are more likely to do badly at school or college. To explore the difficulties faced by young adult carers (aged 14–25) in the UK, an online survey was conducted. Almost half (45%) of the 295 respondents reported having a mental health problem. The relationship between the extent of caring and perceived mental health problems and the impact of caring responsibilities on work and education were investigated.
This longitudinal study using the sampling frame of the second Australian prevalence study of psychosis aimed to identify predictors of the health and well-being of care-givers of people with psychosis and inform social work recovery-oriented practice. Ninety-eight carers were recruited at baseline and seventy-eight re-interviewed after one year. Correlational and regression analyses were conducted to identify relationships between carer and service user-related factors and predictors of carers’ health and well-being over time. Carers’ poor health and well-being were predicted by a combination of specific service user-related characteristics and care-giving factors. Carers’ assessment of the functioning of their relative/friend with psychosis at baseline had stronger relationships with their own health and well-being at follow-up than other factors. Carers’ care-giving burden was predicted by their educational levels and their relative/friend’s cognitive levels over time. To achieve improved health and well-being for carers, services need to consider potential deterioration of carers’ physical health over time, to facilitate appropriate referral of carers with physical health problems and provide psycho-social rehabilitation services to improve the functioning of people with psychosis. Findings provide some evidence to support social work recovery-oriented practice in working with people with psychosis and the routine inclusion of carers in such interventions.
Purpose Micro-finance self-help groups empower caregivers to indulge in productive activities based on the local availability of resources to reduce their financial burden. The purpose of this paper is to assess the need for and feasibility of initiating micro-finance groups for the caregivers of persons with mental disability in a rural socio-economically backward community of Karnataka, India. Design/methodology/approach The design of the study was a cross-sectional survey, with mixed methodology design out of the eight localities where the Mental Health Public Health Centres (PHC) were running successfully in Konandur area, Thirthahalli Taluk, Karnataka, one PHC was selected using simple Random Sampling Design and a 5 kms radius from Konandur town was selected as the area of the survey (190 households). During door-to-door survey, if the family indicated that a particular member is mentally unwell, the GHQ-5 and Symptoms and Others checklist were administered on him/her and the women caregiver was interviewed using qualitative needs assessment schedule and Perceived Social Support Scale. Findings Ten persons/households with mental illness (5.26 per cent) were identified in the community. Themes of financial needs, capacity of the caregiver, community resources, need for the microfinance self-help groups, informational needs, social support, burn out, and stigma elicited in the interview were depicted in the form of a conceptual framework to understand the inter-connectedness between the various themes. Research limitations/implications This study is the first initiative in the field of micro-finance self-help groups for the persons with mental illness and families. The design of the study was a cross-sectional survey, which is found globally to be the most suited in conducting prevalence studies, as it provides accurate results for future studies as well as it is the first step to obtain accurate baseline values to later plan a prospective follow up study. The study used mixed methodology design. Though the sample size was small, the information collected from the participants in qualitative and quantitative method was triangulated and conceptual frameworks were developed. As this study is one of the first of its kind in the country, the results of this study from the stated sample can be considered as an important pilot for future longitudinal and cross-sectional studies to be planned in the community. Originality/value There is hardly any scientific literature which talks about the need for Micro-finance self-help groups for Persons with Disability, especially with person with mental disability. In order to initiate any Micro-finance SHG activities, it is essential to first undertake the need for and feasibility of initiating such micro-finance group activities in any given area. This study will be an important milestone in initiating any self-help group activity for caregivers of persons with mental disability, as it would help us understand the financial needs of the community, based on which a draft proposal to initiate micro-finance self-help group activities can be drawn up.
Aims: To identify affected family members' (AFMs) experiences of barriers and facilitators to informal and formal help-seeking for themselves and on behalf of a close relative with alcohol and other drug (AOD) misuse. Methods: Qualitative study, informed by interpretative phenomenological analysis. Semi-structured, audio-recorded, telephone interviews were used to collect data from 31 AFMs. Results: AFMs experienced several overlapping and at times competing help-seeking obstacles and enablers in accessing informal and formal support for themselves and on behalf of their relative with AOD misuse, and these are reflected in two themes and associated sub-themes: barriers to help-seeking and facilitators to help-seeking. Five help-seeking barriers were abstracted from the data: Stigma discourages help-seeking, Difficulty locating informal and formal support services, Previous negative AOD service help-seeking experiences deter subsequent help-seeking, Hopelessness inhibits help-seeking, and Feeling undervalued as an AFM. Three help-seeking facilitators were abstracted from the data: Previous positive help-seeking experiences increase future help-seeking, Overcoming shame and isolation and being open with trusted significant others, and Persevering in help-seeking. Conclusions: AFMs who access informal and formal help sources for themselves, and on behalf of their relative, are more likely to sustain their important support-giving role. Measures to strengthen AFMs' capacity and willingness to support their relative should be founded on an understanding of factors that affect their own help-seeking in addition to those encountered when help-seeking on behalf of their relative. Our findings have implications for the visibility of AOD services and informal support groups on the Internet, organisational culture of some AOD services, valuing the contributions of AFMs, and protecting AFMs and their relatives' privacy. Our findings also have implications for reducing public stigma of AOD misuse, changing some AFMs' scepticism about treatment outcomes, and reinforcing and enhancing AFMs' skills in persevering with help-seeking.
Aims: To identify affected family members' (AFMs) experiences of barriers and facilitators to informal and formal help-seeking for themselves and on behalf of a close relative with alcohol and other drug (AOD) misuse. Methods: Qualitative study, informed by interpretative phenomenological analysis. Semi-structured, audio-recorded, telephone interviews were used to collect data from 31 AFMs. Results: AFMs experienced several overlapping and at times competing help-seeking obstacles and enablers in accessing informal and formal support for themselves and on behalf of their relative with AOD misuse, and these are reflected in two themes and associated sub-themes: barriers to help-seeking and facilitators to help-seeking. Five help-seeking barriers were abstracted from the data: Stigma discourages help-seeking, Difficulty locating informal and formal support services, Previous negative AOD service help-seeking experiences deter subsequent help-seeking, Hopelessness inhibits help-seeking, and Feeling undervalued as an AFM. Three help-seeking facilitators were abstracted from the data: Previous positive help-seeking experiences increase future help-seeking, Overcoming shame and isolation and being open with trusted significant others, and Persevering in help-seeking. Conclusions: AFMs who access informal and formal help sources for themselves, and on behalf of their relative, are more likely to sustain their important support-giving role. Measures to strengthen AFMs' capacity and willingness to support their relative should be founded on an understanding of factors that affect their own help-seeking in addition to those encountered when help-seeking on behalf of their relative. Our findings have implications for the visibility of AOD services and informal support groups on the Internet, organisational culture of some AOD services, valuing the contributions of AFMs, and protecting AFMs and their relatives' privacy. Our findings also have implications for reducing public stigma of AOD misuse, changing some AFMs' scepticism about treatment outcomes, and reinforcing and enhancing AFMs' skills in persevering with help-seeking.
Objectives: This study aims to analyse the level of distress caused by delirium in patients' family and their nurses, and to identify factors associated with psychological distress in families of older adult inpatients in Intermediate Care Units/IMCUs regarding their global experience during hospitalization. Method: A prospective pilot study was carried out with families and nurses of older adult patients (≥65 y.o.) consecutively recruited from two IMCUs in Intensive Care Medicine Service in a University Hospital. Patients with Glasgow Coma Scale ≤11, brain injury, blindness/deafness and inability to communicate were excluded. Delirium was daily assessed with Confusion Assessment Method/CAM. The distress level regarding this episode in family and nurses was measured with Delirium Experience Questionnaire/DEQ. Family psychological distress of all recruited patients was assessed with Kessler Psychological Distress Scale/K10. Results: This study included 42 inpatients (mean age/MA = 78 y.o., 50% women), 32 families (68.8% sons/daughters, MA = 50.6 y.o., 81.3% women) and 12 nurses caring for delirium patients (MA = 33 y.o., all women). A total of 12 (28.6%) patients had delirium. Distress related to this episode were higher for families than for nurses (M = 3 vs. M = 2), but differences did not reach statistical significance (Z = –1.535, p = 0.125). The hierarchical regression model explained 44.3% of variability in family psychological distress. Higher levels of psychological distress were associated with living with the patient (p = 0.029), presence of previous cognitive decline (p = 0.048) and development of delirium (p = 0.010). Conclusion: These preliminary results show that family psychological distress is higher, when older adult patients developed delirium during hospitalization. Particular attention to these family carers should be given in future development of psychological support and psychoeducational interventions.
As parents age, well siblings are often asked to assume caregiving responsibilities for their brother or sister with mental illness. However, relatively little is known about how well siblings prioritize sibling caregiving responsibilities with other life demands. We examined well siblings’ attitudes toward self-care and caregiving for their sibling with mental illness (self- and sibling-care) using two cross-sectional samples. The first sample of well siblings (N = 242) was used to examine the psychometric properties of the self- and sibling-care measure (SSCM), designed to assess the degree to which siblings prioritize their own needs and the needs of their sibling with mental illness. A second sample (N = 103) was used to determine the relative contribution of self- and sibling-care attitudes in accounting for variation in well siblings’ reports of personal loss and stress-related personal growth. Results support the psychometric validity of the SSCM and suggest that self- and sibling-care attitudes account for greater variance in scores on perceived personal loss and stress-related growth than demographic or caregiving factors. Our findings support the need to address family care responsibilities and resource limitations through recovery-oriented mental health policies, services, and programs.
Background: Persons with psychiatric disorders (PD) commonly have their money officially or unofficially managed by others, with money managers most commonly being family members. Aims: (i) Identify characteristics of persons with PD, adult family members, and interactions with each other significantly associated with family money management (FMM). (ii) Identify significant differences in aforementioned characteristics between official versus unofficial FMM. Methods: Five hundred and seventy-three adults residing in USA with an adult relative with PD completed a survey. Results: Among persons with PD, FMM was positively associated with lower income, diagnosis of schizophrenia/schizoaffective or bipolar disorder, psychiatric hospitalization, and arrest history. FMM was negatively associated with family members having a mental health diagnosis. FMM was positively associated with interaction characteristics of co-residence, financial assistance, caregiving, and use of limit-setting practices. Compared to official FMM, when unofficial FMM was present, persons with PD were less likely to have been psychiatrically hospitalized or to have regularly attended mental health treatment. When unofficial FMM was present, adult family members were less likely to be a parent of the person with PD. Conclusions: Practitioners should assess the level of burden experienced by family money managers and assess and address with family money managers the use of limit-setting practices.
Carers of individuals with eating disorders (EDs) report high levels of burden and distress and describe a number of unmet needs. As a result, a number of interventions have been designed to support carers, including the “Maudsley eating disorder collaborative care skills workshops,” which comprise six 2‐hr workshops delivered over 3 months for parents and carers of people with EDs. The current study aimed to test a proof‐of‐concept that this workshop could be effectively delivered in 1 day. An additional aim was to assess whether the workshop had direct effects on carer skills. A nonexperimental repeated measures research design was employed, giving measures before and after a 1‐day workshop. Results suggested significant increases in carer self‐efficacy and carer skills, with moderate to large effect sizes. Qualitative analyses supported these results whilst also generating ideas to improve the 1‐day workshop.
Over a third of individuals with borderline personality disorder (BPD) are in long-term romantic partnerships, yet little is known about the experiences of their partners. Because difficulties in interpersonal relationships are a hallmark of BPD, it is especially important to understand the support needs of their romantic partners. This systematic review investigates the experiences of romantic partners of adult individuals with BPD and the interventions designed to support them. Twenty-two articles were found, 13 of which pertained to partner experiences and 9 to interventions. Thematic analysis was used to identify three main themes in the descriptions of partners' experiences: emotional challenges, dual roles as both a romantic partner and parental/therapeutic figure, and lack of control. The available interventions, which consisted of educational and skills-based programs with limited efficacy data, addressed only a small portion of the subthemes identified in the literature describing partners' experiences. The discrepancy between the needs identified in the partner-experience literature and the interventions available suggests a need to develop and evaluate more partner-oriented programming. Such programming should use psychoeducation, peer support, and individual- and relationship-based skills development to address and therefore improve the experiences of partners of individuals with BPD.
Purpose The purpose of this paper is to reflect on the development of a recovery-oriented training programme for mental health care-givers. It also considers the effectiveness of using participatory research methods that promote involvement of people with diverse expertise to co-produce this programme. It presents a rationale for developing recovery-oriented training, which employs blended learning, comprising face-to-face and e-learning. Design/methodology/approach A small advisory group consisting of professionals, experts-by-experience (service users) and -by-caring (care-givers) and an academic developed a blended learning programme about the recovery approach for mental health carer-givers. This paper details the participatory approach supported by an action research cycle that contributed to the design of the programme, and the specific impact of experiential knowledge on its development. Findings Reflections on the advisory group process are described that led to the co-production of the course. This leads to consideration of the value of using this research approach to develop a carer-focused programme. The content of the recovery-oriented training programme is presented which adopts blended learning. This leads to discussion of potential of this format to improve carers’ access to training. Originality/value It is proposed that this recovery-oriented course, building on a previous study, has the potential to positively influence outcomes for the training programme participants (the care-givers) and the person they support. It is suggested that blended learning may in part overcome some of the barriers carers experience to accessing and participating in traditional interventions. Reflections on the process of co-production underline the value of participatory research in designing this recovery-oriented course for carers.
Background: Expressed emotion (EE) is a global index of familial emotional climate, which is comprised of emotional over-involvement (EOI) and critical comments (CC)/hostility. Although EE is an established predictor of negative outcomes for both people with long-term mental health difficulties and their family carers, its psychological underpinnings remain relatively poorly understood. This paper examined associations between attachment, mentalisation ability and aspects of EE. Methods: Carers of people with long-term mental health difficulties (n = 106) completed measures of adult attachment (the Experiences in Close Relationships-Short Form questionnaire), mentalisation (the Reading the Mind in the Eyes Test and the Emotional Self-Efficacy Scale) and EE (the Family Questionnaire). Data were analysed using hierarchical multiple regression. Results: Attachment avoidance and facets of mentalisation were directly and uniquely positively associated with CC/hostility, with attachment avoidance and other-directed emotional self-efficacy (one facet of mentalisation) each significantly predicting CC/hostility scores after controlling for the effects of EOI and demographic variables. However, no associations were observed between EOI, attachment anxiety and mentalisation. Furthermore, no indirect effects from attachment to EE via mentalisation was found. Conclusions: Although it would be premature to propose firm clinical implications based on these findings, data indicate that it may be beneficial for clinicians to consider attachment and mentalisation in their conceptualisation of carers’ criticism and hostility. However, further research is needed to clarify the magnitude of these associations and their direction of effect before firm conclusions can be drawn.
Purpose :The aim of the article is to explore the chronic sorrow experiences of the caregivers of clients with schizophrenia in Taiwan. Design and Methods: Descriptive, phenomenological, and purposive sampling and one‐to‐one, in‐depth, and unstructured interviews were used. Data saturation was achieved after interviewing 12 participants. Narratives were analyzed using Colaizzi's (1978) method. Findings: Three themes and eight subthemes emerged, including encountering sorrow (disordered life, disintegrated self‐esteem, little prospect for hope, and collapsed sense of security), talking with sorrow (cognitive change and transformation of action), and living with sorrow (living with defects and living with responsibilities). Practice Implications: Advanced practice psychiatric nurses should take the emotional stability of caregivers into consideration. Caregivers should be encouraged and taught effective culture‐oriented strategies for living with sorrow.
Purpose: Clinical guidelines emphasise the central role of family members in supporting people with bipolar disorder. However, there has been little focus on the challenges family members face in supporting their relative. This qualitative study explored the challenges of providing support to a relative with bipolar disorder, and how family members attempted to meet these challenges. Factors that helped or hindered their efforts were also explored, including experiences of professional support. Methods: Semi-structured interviews were conducted with 18 family members (partners, parents, adult children, and siblings). Transcripts were analysed using the Framework approach. Results: Participants faced numerous challenges pertaining to the nature of the disorder and specific illness phases, their relative’s responses to their attempts to help, and the limitations of support from healthcare professionals. Although participants were resourceful in managing these challenges, they strongly valued professional input. Six themes were identified: ‘Not knowing: like being in a minefield’, ‘It’s out of my control: sitting waiting for the next thing to happen’, ‘Treading on eggshells’, ‘Picking up on signs’, ‘Times of crisis: between a rock and a hard place’, and ‘I have to make my voice heard’. Conclusions: Family members supporting a relative with bipolar disorder face significant challenges but show considerable resourcefulness in managing them. The findings underline the importance of input from healthcare professionals to help family members effectively support their relative and manage the challenges they face. Professional support should be strengths-based, and tailored to family members’ needs.
This experimental study was carried out using a pre-test/post-test control group model to evaluate the effect of a "Brief Cognitive Behavioural Stress Management Programme" (BCBSMP) on mental status, coping with stress attitude, and caregiver burden while caring for patients with schizophrenia. A total of 61 caregivers who provided care for schizophrenia patients at a community mental health centre were included in the study. Caregivers were matched according to gender and scale scores and were assigned to either the study or the control group. Before and after the programme, caregivers in both groups were given the "Demografic Data Form", "Zarit Caregiver Burden Scale", "Coping Attitude Evaluation Scale", "Stress Indicators Scale", and the "General Health Survey-28". Caregivers in the study group were taken to a BCSMP one session per week (each session lasted 120min) for seven weeks. We determined that the stress indicators, the risk of developing a psychological disorder, and caregiver burden decreased and skills related to both the problem-oriented and emotion-oriented aspects of stress increased in the study group after the programme.
The aim of this study was to explore the needs of Family Caregivers of people living with mental illness in Kumasi, Ghana. An exploratory research design using a Qualitative approach was employed for the study and one on one interview was used to collect data. A total of 13 participants who were identified as Family Caregivers of mentally ill persons having their rehabilitation in Kumasi were used for the study. Thematic content analysis was used to analyse and interpret the qualitative data. The results indicated that Family Caregivers were in need of medical attention as well as helping hand to assist them in their many physical engagement and adequate sleep and time off to replenish their lost energies to prevent stress. They were also in need of shelter to accommodate their mentally ill relatives as well as social affection. Others were in need of information to gain insight into patient's treatment and condition as well as financial support. Family Caregivers needed support from friends and society in order to psyche them for their task. It is, therefore, necessary that the needs of Family Caregivers are addressed so that they can function accordingly.
The purpose of this article is to generate meaningful understanding of the mental health informal carers’ experience and to identify a possible approach to social work intervention. A mixed method of quantitative and qualitative analysis was used for data collection. The findings reveal that most of the informal carers are female adult. They experience stress, domestic violence, social exclusion as a result of the caring role, and fear of stigma. Cultural and religious factors must be considered when translating the caring role. The findings suggest implications for social work practice at a community level, utilizing a familial and support-group approach, with a practice that is sensitive to gender and religion.
BACKGROUND: Parents often become the caregivers for their adult children with serious mental illness (SMI) due to the chronic and debilitating course of the illness and shortages in funding for community mental health services and residential placements. OBJECTIVE: To examine parents' management styles when caring for adult children with SMI and parents' perspectives on what type of community-based mental health interventions would support and/or enhance overall family functioning. DESIGN: A qualitative descriptive study using semistructured interviews with parents caring for adult children with SMI. The study was undergirded by Knafl and Deatrick's Family Management Style Framework. RESULTS: Four major themes emerged from the data describing prolonged and difficult phases that parents and the family undergo in caring for an adult child with SMI. CONCLUSIONS: Successful management of these phases must include increasing access to mental health information, mental health screening, early interventions, and violence prevention for adult children and their families.
WHAT IS KNOWN ON THE SUBJECT?: Existing literature provides insight into the general experience of carers of people with a mental illness. Previous studies have found that carers experience a range of emotions when looking after their relatives with a mental illness. However, experiences of carers as they engage with the healthcare system is largely absent from the literature. WHAT THIS PAPER ADDS TO EXISTING KNOWLEDGE?: This paper identified the experiences of carers when their relatives are experiencing a crisis or acutely unwell. Carers found themselves in the middle between mental health services and their relatives. Strategies employed by carers to ensure their relatives receive adequate care were identified from this study. This paper identified how carers needed to become more assertive in order to receive adequate care for their relatives, and this finding has implications for any future carer education. WHAT ARE THE IMPLICATIONS FOR PRACTICE?: The participants identified the need to work more collaboratively with carers of people with a mental illness as they seek treatment for their relatives in order to achieve better health outcomes for the patients. Improved health service engagement of carers was seen by participants to assist them to better care for their relative. The study also found that there needs to be a clearer definition as to what constitutes mental health crisis and how carers are able to intervene during this period. Services could provide clear information concerning crisis services and in particular triage.
A family peer-education program for mental disorders was developed in Japan, similar to existing programs in the United States and Hong Kong. Families that serve as facilitators in such programs may enhance their caregiving processes and, thereby, their well-being. This study's aim was to describe how families' caregiving experiences change, beginning with the onset of a family member's mental illness, through their involvement in a family group or peer-education program as participants then facilitators. Thus, this study was conducted in a family peer-education program for mental disorders in Japan. Group interviews were conducted with 27 facilitators from seven program sites about their experiences before, during, and after becoming facilitators. Interview data were coded and categorized into five stages of caregiving processes: (1) withdrawing and suppressing negative experiences with difficulty and regret (2) finding comfort through being listened to about negative experiences (3) supporting participants' sharing as facilitators (4) understanding and affirming oneself through repeated sharing of experiences and (5) finding value and social roles in one's experiences. The third, fourth, and fifth stages were experienced by the facilitators. The value that the facilitators placed on their caregiving experiences changed from negative to positive, which participants regarded as helpful and supportive. We conclude that serving as facilitators may improve families' caregiving processes.
Background: Shortened life expectancy of people with mental illness is now widely known and the focus of research and policy activity. To date, research has primarily reflected perspectives of health professionals with limited attention to the views and opinions of those most closely affected. The voice of carers is particularly minimal, despite policy stipulating carer participation is required for mental health services. Aim: To present views and opinions of carers regarding physical health of the people they care for. Methods: Qualitative exploratory. Two focus groups and one individual interview were conducted with 13 people identifying as carers of a person with mental illness. Research was conducted in the Australian Capital Territory. Data analysis was based on the thematic framework of Braun and Clarke. Results: Two main themes were interaction between physical and mental health; and, carers’ own physical and mental health. Participants described the impact of mental illness and its treatments on physical health, including their own. Conclusions: Carers are acknowledged as crucial for the delivery of high quality mental health services. Therefore they have an important role to play in addressing the poor physical health of people with mental illness. Hearing their views and opinions is essential.
Objectives: Stigma compounds the burden experienced by family members of those with a mental illness. This study aimed to examine burden experienced by carers of people with schizophrenia or affective disorders and to explore the relationship between carer burden and stigma. Method: A cross sectional descriptive study was conducted with patient-carer dyads involving 67 patients diagnosed with schizophrenia and 51 diagnosed with affective disorder. Carers completed the Zarit Burden Interview (short version) and stigma was measured using the Stigma Scale and the Internalised Stigma of Mental Illness Scale. Results: Carer burden was significantly higher for schizophrenia than affective disorders. Female carers experienced significantly higher burden than male carers. Diagnosis, gender of carer and stigma predicted 22% of the variance in carer burden, with gender identified as a significant predictor. Conclusions: Reducing stigma related to disclosure of mental illness in carers has the potential to reduce carer burden.
The literature reported several factors which could impact the quality of life of caregivers and patients with psychiatric illnesses. This study aimed to determine the level of quality of life among a sample of 532 of caregivers and patients with psychiatric illness at two out-patient mental health clinics in Northern Jordan, and to examine the relationships of sociodemographic characteristics, stigma and caregiver perceptions of burden with quality of life. A correlational descriptive design was utilized. Three self-administered questionnaires were used. Results indicated that patients had low to moderate QOL, and they suffered moderate to high stigma. Also, family caregivers perceived low to moderate QOL. Patients' and family caregivers' stigma perception correlated negatively and significantly with WHOQOL-BREF. Family caregivers' burden correlated negatively and significantly with all domains of WHOQOL-BREF, total QOL-100, and self-reported general health. Health care providers should assure the importance of focusing more toward minimizing stigma and promoting physical and general health to maintain a good quality of life of caregivers and patients with mental illnesses.
The first aim of this systematic review was to evaluate the evidence for family psychoeducation (FPE) interventions for major depressive disorder (MDD). A second aim was to compare the efficacy of different modes of delivering face-to-face FPE interventions. Ten studies (based on nine distinct samples) were identified comprising four single-family studies, four multifamily studies, one single versus multifamily comparative study, and one peer-led, mixed-diagnosis study. Seven studies measured patient functioning and six reported positive outcomes. Six studies measured carer's well-being and four reported positive outcomes. Results provide preliminary evidence that FPE leads to improved outcomes for patient functioning and family-carer's well-being for persons with depression. The implications for future development and delivery ofFPE interventions for MDD are discussed.
Previous research on healthcare technologies has shown how health tracking promotes desired behavior changes and effective health management. However, little is known about how the family caregivers' use of tracking technologies impacts the patient-caregiver relationship in the home. In this paper, we explore how health-tracking technologies could be designed to support family caregivers cope better with a depressed family member. Based on an interview study, we designed a simple tracking tool called Family Mood and Care Tracker (FMCT) and deployed it for six weeks in the homes of 14 family caregivers who were caring for a depressed family member. FMCT is a tracking tool designed specifically for family caregivers to record their caregiving activities and patient's conditions. Our findings demonstrate how caregivers used it to better understand the illness and cope with depressed family members. We also show how our tool improves family communication, despite the initial concerns about patient-caregiver conflicts.
Background: Caregivers are responsible for the home care of family members with mental-health disorders often experience changes in their life that can generate stress and burden. The aim of this study was to identify factors associated with the burden of caregivers of family members with mental disorders. Methods: This cross-sectional study was conducted with a non-probability sample of family caregivers, whose patients attended a community services program, the Psychosocial Care Centers, in three cities in the southwest region of Goiás State, Central Brazil. Data collection took place from June 2014 to June 2015. The participants were 281 caregivers who completed a sociodemographic questionnaire and the Zarit Burden Interview (ZBI). Bivariate analyses (t test, analysis of variance, and Pearson correlation) were performed, and variables with values of p < 0.10 and gender were included in a multiple-linear regression model. Values of p < 0.05 were considered significant. Results: The caregivers were mostly female and parents of the patients, were married, with low education, and of low income. The mean ZBI score was 27.66. The factors independently associated with caregivers’ burden were depression, being over 60 years of age, receiving no help with caregiving, recent patient crisis, contact days, and having other family members needing care. Conclusions: This study identified factors that deserve the attention of community services and can guide programs, such as family psycho-education groups, which may help to minimize or prevent the effects of burden on family caregivers responsible for patients’ home care.
Psychoeducational interventions for family carers of people with psychosis are effective for improving compliance and preventing relapse. Whether carers benefit from these interventions has been little explored. This systematic review investigated the effectiveness of psychoeducation for improving carers' outcomes, and potential treatment moderators. We searched for randomised controlled trials (RCTs) published in English or Chinese in eight databases. Carers' outcomes included wellbeing, quality of life, global morbidities, burden, and expressed emotion. Thirty-two RCTs were included, examining 2858 carers. Intervention duration ranged from 4 to 52weeks, and contact times ranged from 6 to 42hours. At post intervention, findings were equivocal for carers' wellbeing (SMD 0.103, 95% CI −0.186 to 0.392). Conversely, psychoeducation was superior in reducing carers' global morbidities (SMD −0.230, 95% CI −0.386 to −0.075), perceived burden (SMD −0.434, 95% CI −0.567 to −0.31), negative caregiving experiences (SMD −0.210, 95% CI −0.396 to −0.025) and expressed emotion (SMD −0.161, 95% CI −0.367 to −0.045). The lack of available data precluded meta-analysis of outcomes beyond short-term follow-up. Meta-regression revealed no significant associations between intervention modality, duration, or contact time and outcomes. Further research should focus on improving carers' outcomes in the longer-term and identifying factors to optimise intervention design.
Purpose: Caregiver, relational, and patient factors have been associated with the health of family members and friends providing care to patients with early-stage cancer. Little research has examined whether findings extend to family caregivers of patients with incurable cancer, who experience unique and substantial caregiving burdens. We examined correlates of mental and physical health among caregivers of patients with newly-diagnosed incurable lung or non-colorectal gastrointestinal cancer. Methods: At baseline for a trial of early palliative care, caregivers of participating patients (N = 275) reported their mental and physical health (Medical Outcome Survey-Short Form-36); patients reported their quality of life (Functional Assessment of Cancer Therapy-General). Analyses used hierarchical linear regression with two-tailed significance tests. Results: Caregivers’ mental health was worse than the U.S. national population (M = 44.31, p < .001), yet their physical health was better (M = 56.20, p < .001). Hierarchical regression analyses testing caregiver, relational, and patient factors simultaneously revealed that younger (B = 0.31, p = .001), spousal caregivers (B = −8.70, p = .003), who cared for patients reporting low emotional well-being (B = 0.51, p = .01) reported worse mental health; older (B = −0.17, p = .01) caregivers with low educational attainment (B = 4.36, p < .001) who cared for patients reporting low social well-being (B = 0.35, p = .05) reported worse physical health. Conclusions: In this large sample of family caregivers of patients with incurable cancer, caregiver demographics, relational factors, and patient-specific factors were all related to caregiver mental health, while caregiver demographics were primarily associated with caregiver physical health. These findings help identify characteristics of family caregivers at highest risk of poor mental and physical health who may benefit from greater supportive care.
Background: The recovery process of a psychiatric patient is related to his primary informal caregiver's style of coping with stress. There is insufficient literature on validations of instruments that measure coping styles in this population. Objective: To adapt and validate a scale to measure coping strategies in primary informal caregivers. Method: The adapted scale was based on the Extreme Coping Scale of López‐Vázquez and Marván. Items from that scale were adapted for application to informal caregivers. The scale was administered to 122 primary informal caregivers of patients from two psychiatric institutions in Mexico. Psychometric analyses were performed to determine the scale's properties. Results: The scale was composed of 20 items (six less than in the original scale) and two factors: (i) active coping (Cronbach's alpha = .837) and (ii) passive coping (Cronbach's alpha = .718). Discussion: The findings are discussed in the light of the importance of studying the relationship between coping styles and the well‐being of both informal caregivers and psychiatric patients. Implications for practice: The scale could be used by health practitioners and researchers to generate strategies to support the family caregiver, as well as to measure the results of interventions.
The association between the socio-demographic characteristics of caregivers, such as gender and caregiver burden, is well documented; however, the process underlying this relationship is poorly understood. Based on the stress process model, we designed a cross-sectional study to examine the mediating and moderating effect of resilience on the relationship between gender and caregiver burden. Caregivers of individuals with severe mental illness (n = 201) were recruited in two psychiatric outpatient clinics in Malaysia. The relationship between the gender of the caregiver and caregiver burden was mediated by resilience, thus supporting the stress process model. The findings from the present research contribute to the growing evidence of the interaction between socio-demographic variables of caregivers and resilience, and caregiver burden.
Within the current Dutch policy context the role of informal care is revalued. Formal care activities are reduced and family and friends are expected to fill this gap. Yet, there is little research on the moral ambivalences that informal care for loved ones who have severe and ongoing mental health problems entails, especially against the backdrop of neoliberal policies. Giving priority to one’s own life project or caring for a loved one with severe problems is not reconciled easily. Using a case study we illustrate the moral ambivalences that persons may experience when they try to shape their involvement and commitment when a relative is in need. The case comes from a research project which explores whether it is possible to reduce coercive measures in psychiatry by organizing a Family Group Conference. The purpose of the article is to explore what theoretical concepts such as ‘communities of fate’, ‘communities of choice’ and ‘personal communities’ add in understanding how persons shape their involvement and commitment when a family member experiences recurrent psychiatric crises.
This positional paper explores the role of personal networks (family and friends) in caring for people with mental health problems. Since the eighties, major changes have been made in the organization and focus of professional mental healthcare. Correspondingly, new expectations and changes in the division of care responsibilities between people with mental health problems, their personal networks and their professional care providers were created. In this paper, I investigate how the transition in mental healthcare changed the allocation of care responsibilities between personal networks, people with mental health problems and professional caregivers. I will consider why care responsibilities of personal networks have been taken for granted in these processes, and discuss whether personal networks should have a more prominent voice in the assignment of care responsibilities, and how this can be done. A theoretical framework of feminist care ethics inspired by scholars such as Margaret Urban Walker, Joan Tronto and Hilde Lindemann is used to reflect on the need for social inclusion.
Despite the internationally recognised importance of informal care, especially in settings with limited services, few studies focus on the informal care for people with mental health problems in low‐ and middle‐income countries. Making informal care visible is important for understanding the challenges and identifying the needs to be addressed. This ethnographic case study explored the dynamics of informal care for people with chronic psychotic symptoms in a group of San living in poor socioeconomic circumstances in a township near Kimberley, Northern Cape, South Africa. Data were collected in 2013 and 2014 and included semi‐structured interviews, informal conversations and observations. Using local terminology, four individuals with chronic psychotic symptoms were identified and selected during the research process. A total of 33 semi‐structured interviews took place with their caregivers. Data were analysed using descriptive, interpretive and pattern coding to identify core themes and interrelations across the four cases. Results indicate that informal care is characterised by shared and fragmented care structures. Care was shared among family members from various households and unrelated community members. This allowed for an adaptive process that responded to local dynamics and the care recipients’ needs. However, informal care was fragmented as it was generally uncoordinated, which increased the recipients’ vulnerability as caregivers could redirect care‐giving responsibility and withdraw care. Specific challenges for providing care were related to poverty and care resistance. To improve the living conditions of people suffering from psychosis‐related mental health problems, community‐based mental healthcare should broaden its scope and incorporate local strengths and challenges.
Providing care to a disabled parent can be a psychologically strenuous activity with potential negative consequences for the caregiver's mental health. At the same time, experiencing the declining health of a parent – often the very reason for the parent's care needs – can impact the adult child's mental health negatively. Because both events are usually observed simultaneously, disentangling the “caregiver effect” and the “family effect” remains a challenge. Using longitudinal data of the elderly population in Europe and an instrumental variable approach to address possible endogeneity concerns, this paper separately estimates the effect of caregiving and the decline of a parent's health on adult children's mental health. While I find negative but small caregiver and family effects for the “average” caregiver, the caregiver effect is multiplied for daughters if care provision is triggered by higher parental care needs.
Significant others are often crucial for suicidal persons or suicide attempters’ access to care, yet little is known about their efforts to seek help. This article presents the findings of a qualitative pilot study carried out in Switzerland on the help-seeking process of 18 significant others, their perception of the care received by their loved one, and the interactions and collaboration they experienced with professionals. Most significant others repeatedly sought out support for their loved one and themselves. The help-seeking process seemed mostly difficult, was seldom successful on the first attempt, and was filled with multiple difficulties, such as availability and continuity of care and cooperation issues with professionals. Two-thirds of participants were not satisfied with the care provided to their loved ones and half of them faced challenges in their cooperation with professionals, i.e., poor sharing of information or not being acknowledged as partners or supported by professionals. Based on their experience, providing education about suicidal crises and care programs to significant others might lighten their burden and improve their cooperation with professionals, who in turn may benefit from training in communication issues and specific methods of cooperation with significant others in suicidal situations.
Informal care‐giving can be a demanding role which has been shown to impact on physical, psychological and social well‐being. Methodological weaknesses including small sample sizes and subjective measures of mental health have led to inconclusive evidence about the relationship between informal care‐giving and mental ill‐health. This paper reports on a study carried out in a region which investigated the relationship between informal care‐giving and mental ill‐health. The analysis was conducted by linking three data sets, the Northern Ireland Longitudinal Study, the Northern Ireland Enhanced Prescribing Database and the Proximity to Service Index from the Northern Ireland Statistics and Research Agency. Our analysis used both a subjective measure of mental ill‐health, i.e. a question asked in the 2011 Census, and an objective measure, whether the respondents had been prescribed antidepressants by a General Practitioner between 2010 and 2012. We applied binary logistic multilevel modelling to these two responses to test whether, and for what sub‐groups of the population, informal care‐giving was related to mental ill‐health. The results showed that informal care‐giving per se was not related to mental ill‐health, although there was a strong relationship between the intensity of the care‐giving role and mental ill‐health. Females under 50, who provided over 19 hours of care, were not employed or worked part‐time and who provided care in both 2001 and 2011 were at a statistically significantly elevated risk of mental ill‐health. Caregivers in remote areas with limited access to shops and services were also at a significantly increased risk as evidenced by prescription rates for antidepressants. With community care policies aimed at supporting people to remain at home, the paper highlights the need for further research in order to target resources appropriately.
The recent rise in suicide among Bhutanese refugees has been linked to the erosion of social networks and community supports in the ongoing resettlement process. This paper presents ethnographic findings on the role of informal care practiced by relatives, friends, and neighbors in the prevention and alleviation of mental distress in two Bhutanese refugee communities: the refugee camps of eastern Nepal and the resettled community of Burlington, Vermont, US. Data gathered through interviews (n = 40, camp community n = 22, resettled community), focus groups (four, camp community), and participant observation (both sites) suggest that family members, friends, and neighbors were intimately involved in the recognition and management of individual distress, often responding proactively to perceived vulnerability rather than reactively to help-seeking. They engaged practices of care that attended to the root causes of distress, including pragmatic, social, and spiritual interventions, alongside those which targeted feelings in the “heart-mind” and behavior. In line with other studies, we found that the possibilities for care in this domain had been substantially constrained by resettlement. Initiatives that create opportunities for strengthening or extending social networks or provide direct support in meeting perceived needs may represent fruitful starting points for suicide prevention and mental health promotion in this population. We close by offering some reflections on how to better understand and account for informal care systems in the growing area of research concerned with identifying and addressing disparities in mental health resources across diverse contexts.
Aims and objectives: To explore parents’ involvement in the informal and professional care of their young adult child with mental illness. A further aim was to examine concepts in the caring theory of ‘Involvement in the light–Involvement in the dark’ in the context of mental health care.
Background: Mental illness has increased among young people in high‐income countries, and suicide is now the leading cause of death for this group. Because of their disease, these young people may have difficulty in carrying out daily, taken‐for‐granted, tasks. Consequently, they often become dependent on their parents, and their parents shoulder a considerable responsibility.
Design: A secondary descriptive design with a deductive content analysis was used.
Methods: Ten parents who have a son or daughter with long‐term mental illness (aged 18–25 years) were interviewed. The deductive analysis was based on the caring theory of ‘Involvement in the light–Involvement in the dark’.
Results: The results are described using the following concepts in the theory: ‘Knowing’, ‘Doing’, ‘Being’ and ‘Attitude of the health professionals’. The result are to a great extent consistent with the ‘Involvement in the dark’ metaphor, which describes an isolated involvement in which the parents were not informed, seen or acknowledged by the health professionals. Continuous support by professionals with a positive attitude was described as being of decisive importance for meaningful involvement. The theory's transferability is strengthened to the mental health care context.
Conclusions: Parents have a considerable need for knowledge that can enable them to choose how they should act (be) and what they should do, in order to help and support their child.
Relevance to clinical practice: Since the patient, the family members and the professionals are mutually dependent, it is important to make use of each other’s knowledge in a partnership to achieve a common caring strategy.
Caring for someone with a mental illness is associated with high levels of burden and psychological distress. Understanding these factors could be important to prevent the development of physical and mental health problems in carers. The purpose of the present study was to determine the contribution of coping styles and social support in predicting the psychological distress reported by informal carers (IC) of individuals with major depression or bipolar disorder. IC (n = 72) of adults with a diagnosed depressive illness were recruited from mental health organizations within the community setting. Carers completed the General Health Questionnaire, Brief COPE, and Social Support Questionnaire. Multiple linear regression analysis revealed that 63% of the variance in psychological distress could be accounted for by adaptive and maladaptive coping styles and perceived quantity and satisfaction with social support. Satisfaction with social support (β = -0.508, P < 0.001) and maladaptive coping (β = 0.369; P < 0.001) were significant predictors of psychological distress. These findings suggest that interventions should consider coping styles, specifically the interaction between maladaptive behaviours and enhancement of quality of support, to assist carers to manage psychological distress, especially earlier in the caring role.
Purpose: To describe the experiences of informal caregivers with the nursing care received by relatives hospitalized for mania.; Design and Methods: Multicenter phenomenological study using open interviews. Data were analyzed using the Stevick-Colaizzi-Keen method.; Findings: The essence of the experiences was the importance of communication, about being informed and involved in treatment during hospitalization of their relative. The experiences depended on the nature of the relation between participant and relative.; Practice Implications: Nurses should listen to caregivers' experiences, inquire about the expectations of caregivers regarding nursing care, and advise informal caregivers on how to take care of their relatives.
Background: Population aging places greater demands on the supply of informal carers. The aims of this study were to examine (1) the types of unmet support needs of carers of older Australians and (2) the association of unmet needs with mental health.; Methods: Utilizing new data from the 2015 Australian Bureau of Statistics (ABS) Survey of Disability, Ageing and Carers, we calculated the prevalence of carers experiencing specific and multiple unmet needs for support, using single and multiple item measures. Logistic regression models were fitted to examine the association between unmet needs and psychological distress (using the Kessler psychological distress scale), once demographic and health factors were controlled for.; Results: In 2015, 35% of carers of older Australians cited at least one unmet need for support. Among this group, almost two-thirds cited multiple unmet support needs (64.7%). The most prevalent types of unmet needs included financial (18%), physical (13%), and emotional support (12%), as well as additional respite care and support to improve carer health (12%). After controlling for demographic and health characteristics of the carer, having any unmet need for support increased the odds of psychological distress by twofold (OR = 2.20, 95% CI = 1.65, 2.94). With each successive unmet need for support, the odds of psychological distress increased 1.37 times (OR = 1.36, 95% CI = 1.22, 1.54). Those who had received assistance with care, but required further support were 1.95 times more likely (OR = 1.95, 95% CI = 1.17, 3.24) to be in distress and those who had not received care assistance were about 2.4 times more likely (OR = 2.38 95% OR = 1.56, 3.62) to be in distress relative to those with no unmet need.; Conclusions: Addressing unmet support needs of carers is important, not only for the planning of services for carers in an aging population, but also because of the association between unmet support needs and carers mental health.
Objectives: Informal caregiving relationships play an important role in facilitating recovery outcomes in psychosis. The relationship can serve as a source of positive experiences that co-exist alongside common challenges typically associated with mental health problems. People with psychosis, when compared to the general population, are more likely to perpetrate acts of violence, a relationship that is particularly evident during the first psychosis episode. Although victims of service user violence are typically people already known to them, such as informal carers, there remains a lack of understanding about their caring experiences and needs. This study sought to address gaps in the literature by exploring the subjective accounts of informal carers supporting a relative experiencing their first episode of psychosis who has also behaved violently towards them.; Design: A cross-sectional design was employed.; Methods: Individual semi-structured interviews, which were audio recorded and later transcribed for analyses, were undertaken with a convenience sample of eight carers drawn from a specialist early psychosis service. Interview questions focused on their experiences of patient violence, the subjective impact, and coping strategies. An interpretative phenomenological approach was used to analyse the data.; Results: Participants were mostly living with their relative with psychosis and were typically female, parents, and from a black and minority ethnic background. Data analyses identified seven key themes from participant interviews including the lack of predictability over when the violence occurred, being scared and fearful, keeping quiet about what happens at home and in the caregiving relationship, and staying safe.; Conclusions: Reports by informal carers about experiencing violence and victimization from their relatives with psychosis are an important issue in some caregiving relationships during the first episode. Developing a more informed understanding of the specific needs of these carers and the caregiving relationship is indicated. The implications for service providers are discussed.; Practitioner Points: Carers were exposed to a broad range of patient violence, which included being kicked and having weapons used against them. The violence typically occurred within carers' homes, when no other people were around. Patient violence impacted negatively on carer emotional and physical functioning, which included leaving carers living in fear of their own safety and what might become of their relative. The results highlight the importance of routinely asking first-episode carers about their experience of patient violence. The development of interventions (e.g., identification of early triggers, de-escalation) that are able to take account of the ongoing nature and complexity of the caregiving relationship but are purposefully aimed at supporting carers to remain safe in their relationship should be explored for their impact.
Background: Reduced life expectancies are recorded in adults with psychotic disorders. Informal carers play key roles in improving illness outcomes for patients, including significantly reducing rates of relapse and hospitalisation. There is, however, a dearth of literature detailing carers' perspectives on physical health problems in the relatives they care for and implications for those in the caregiving role. The study sought to explore carers' subjective experiences of supporting a relative with psychosis and physical health problems.; Methods: Carers of adults with psychosis were interviewed individually, or as part of a group, about physical health problems in the relatives they care for.; Results: Five key themes were identified from the interviews that reflected (1) ubiquity of physical health problems in psychosis, (2) gaps in service provision for those living with mental and physical health problems, (3) carers' role in responding to service gaps, (4) difficult conversations and (5) impact on carer health.; Conclusion: Service initiatives that are designed to improve patient physical health in psychosis should not overlook the role that informal carers might have in supporting this process. The implications that patient physical health problems present for carer well-being and the quality of the caregiving relationship in psychosis deserve further investigation.
Background: Severe mental illnesses (SMIs) have been found to be associated with both increases in morbidity-mortality, need for treatment care in patients themselves, and burden for relatives as caregivers. A growing number of web-based and mobile software applications have appeared that aim to address various barriers with respect to access to care. Our objective was to review and summarize recent advancements in such interventions for caregivers of individuals with a SMI.; Methods: We conducted a systematic search for papers evaluating interactive mobile or web-based software (using no or only minimal support from a professional) specifically aimed at supporting informal caregivers. We also searched for those supporting patients with SMI so as to not to miss any which might include relatives.; Results: Out of a total of 1673 initial hits, we identified 11 articles reporting on 9 different mobile or web-based software programs. The main result is that none of those studies focused on caregivers, and the ones we identified using mobile or web-based applications were just for patients and not their relatives.; Limitations: Differentiating between online and offline available software might not always have been totally reliable, and we might have therefore missed some studies.; Conclusions: In summary, the studies provided evidence that remotely accessible interventions for patients with SMI are feasible and acceptable to patients. No such empirically evaluated program was available for informal caregivers such as relatives. Keeping in mind the influential role of those informal caregivers in the process of treatment and self-management, this is highly relevant for public health. Supporting informal caregivers can improve well-being of both caregivers and patients.
Few accounts exist of programmes in low- and middle-income countries seeking to strengthen community knowledge and skills in mental health. This case study uses a realist lens to explore how a mental health project in a context with few mental health services, strengthened community mental health competence by increasing community knowledge, creating safer social spaces and engaging partnerships for action. We used predominantly qualitative methods to explore relationships between context, interventions, mechanisms and outcomes in the "natural setting" of a community-based mental health project in Dehradun district, Uttarakhand, North India. Qualitative data came from focus group discussions, participant observation and document reviews of community teams' monthly reports on changes in behaviour, attitudes and relationships among stakeholder groups. Data analysis initially involved thematic analysis of three domains: knowledge, safe social spaces and partnerships for action. By exploring patterns within the identified themes for each domain, we were able to infer the mechanisms and contextual elements contributing to observed outcomes. Community knowledge was effectively increased by allowing communities to absorb new understanding into pre-existing social and cultural constructs. Non-hierarchical informal community conversations allowed "organic" integration of unfamiliar biomedical knowledge into local explanatory frameworks. People with psycho-social disability and caregivers found increased social support and inclusion by participating in groups. Building skills in respectful communication through role plays and reflexive discussion increased the receptivity of social environments to people with psycho-social disabilities participation, thereby creating safe social spaces. Facilitating social networks through groups increases women's capacity for collective action to promote mental health. In summary, locally appropriate methods contribute most to learning, stigma reduction and help-seeking. The complex social change progress was patchy and often slow. This study demonstrates a participatory, iterative, reflexive project design which is generating evidence indicating substantial improvements in community mental health competence.
Objective: The aim was to quantify caregiver distress among informal caregivers of individuals with schizophrenia or schizoaffective disorder and identify its correlates.; Methods: From December 2014 through April 2015, ads posted with mental health advocates and the media recruited informal caregivers, age ≥21 years, to complete an online questionnaire. It included the ten-item Perceived Stress Scale (PSS) (0, no distress; 39, highest) and hypothesized distress correlates in four groups: caregiver and care recipient characteristics; caregiver role demands; caregiver social supports; and caregiver cognitive appraisals of caregiving. Three hypotheses were tested: first, distress is significantly related to variables from each group; second, social supports moderate the effects of role demands on distress; and third, cognitive appraisals mediate the effects of role demands on distress. Hypotheses were tested with multiple linear regression equations and structural equation models (SEMs).; Results: Of 2,338 Web site "hits," 1,708 individuals consented, 1,398 were eligible, and 1,142 had complete data. Most caregivers were women (83%), white (89%), and college educated (59%), with a mean±SD age of 55.6±13.0. Compared with U.S. norms on the PSS (13.4±6.5), mean caregiver distress was high (18.9±7.1). According to SEMs, variables from each group were associated with distress. Contributing most to greater distress were caregiver health problems, providing frequent caregiving assistance, monitoring medication, having limited social support, and appraising caregiving negatively. Cognitive appraisals mediated the effects of demands on distress. Social support had a significant direct effect only.; Conclusions: Caregiver distress was relatively high and related to multiple variables, some of which are potentially modifiable.
Context: In response to political and social factors over the last sixty years mental health systems internationally have endeavoured to transfer the delivery of care from hospitals into community settings. As a result, there has been increased emphasis on the need for better quality care planning and care coordination between hospital services, community services and patients and their informal carers. The aim of this systematic review of international research is to explore which interventions have proved more or less effective in promoting personalized, recovery oriented care planning and coordination for community mental health service users.; Methods: A systematic meta-narrative review of research from 1990 to the present was undertaken. From an initial return of 3940 papers a total of 50 research articles fulfilled the inclusion criteria, including research from the UK, Australia and the USA.; Findings: Three research traditions are identified consisting of (a) research that evaluates the effects of government policies on the organization, management and delivery of services; (b) evaluations of attempts to improve organizational and service delivery efficiency; (c) service-users and carers experiences of community mental health care coordination and planning and their involvement in research. The review found no seminal papers in terms of high citation rates, or papers that were consistently cited over time. The traditions of research in this topic area have formed reactively in response to frequent and often unpredictable policy changes, rather than proactively as a result of intrinsic academic or intellectual activity. This may explain the absence of seminal literature within the subject field. As a result, the research tradition within this specific area of mental health service delivery has a relatively short history, with no one dominant researcher or researchers, tradition or seminal studies amongst or across the three traditions identified.; Conclusions: The research findings reviewed suggests a gap has existed internationally over several decades between policy aspirations and service level interventions aimed at improving personalised care planning and coordination and the realities of everyday practices and experiences of service users and carers. Substantial barriers to involvement are created through poor information exchange and insufficient opportunities for care negotiation.
Social exclusion has a negative impact on quality of life. People living with dementia or mental health disorders as well as informal carers have been separately described as socially excluded. The objective of this systematic narrative review was to examine the extent to which social exclusion experienced by adult informal carers of people living with dementia or severe mental health disorders has been identified and described in research literature. It synthesised qualitative and quantitative evidence and included the perspectives of carers themselves and of professionals. Eight electronic databases (1997-2017) were searched. Five relevant studies published between 2010 and 2016 were identified. All were qualitative and used interviews and focus groups. Study quality was variable and most were European. Two focused on carers of people living with dementia and three on carers of people with mental health disorders. Four investigated carers' perspectives and experiences of social exclusion directly (total of 137 carer participants, predominantly parents, spouses and adult children), while the fifth focused on the perceptions of 65 participants working in health and social care. Stigma, financial difficulties and social isolation were highlighted in four studies and the challenges for carers in engaging in leisure activities were described in the fifth. Most conceptualised social exclusion as a form of stigma, or as resulting from stigma. One presented social exclusion as an element of carer burden. Two explicitly discussed the negative effects of social exclusion on carers. The dearth of research and the lack of specificity about social exclusion in carers was surprising. Future research should investigate aspects of social exclusion that may adversely affect carer wellbeing.;
Councils in England receive 1.8 million new requests for adult social care a year – the equivalent of nearly 5,000 a day – and despite some helpful extra funding there is still a £3.5 billion funding gap facing adult social care by 2025 just to maintain existing standards of care. Despite these tremendous pressures this publication demonstrates current examples of how councils support adult and young carers locally in a range of different ways from respite breaks to discount cards to tailored information and advice.
Key statistics
The following case studies show how local authorities are supporting carers across England. It identifies the challenges authorities face and how they address them, often in partnership. It highlights the impact of services and lessons learned that will be of interest to all councils. The case studies were compiled following discussions with the lead officers and members in the areas.
Background: Agitation is a common feature of bipolar disorder and schizophrenia. Previous research indicates that specific symptoms impact caregiver burden in these conditions, but the impact of agitation on caregiver experience is poorly understood. The aim of this study was to characterise caregiver burden in providers of informal care for patients with bipolar disorder and schizophrenia who experience agitation.; Methods: In total, 297 matched patient and caregiver surveys were collected across the UK, Germany and Spain between October 2016 and January 2017. To be eligible, caregivers needed to provide informal care to a patient with a diagnosis of bipolar disorder or schizophrenia with agitation managed in a community setting and participating in the patient survey. The caregiver survey captured information on demographics and their role in managing the patient's agitation. Caregiver burden was assessed using the Involvement Evaluation Questionnaire. Descriptive analysis was conducted.; Results: Caregivers provided 38.3 h (SD ± 40.34) a week of support to the patient with 20% providing 50 h or more. Most caregivers reported that they recognised an episode of agitation all of the time (44%, n = 130) or sometimes (40%, n = 119). Verbal de-escalation techniques (talking (80%, n = 239) and soothing (73%, n = 218) were the most commonly reported strategies used by caregivers during an episode of agitation; 14% (n = 43) reported resorting to physically restraining the patient. Caregivers supervised rescue medication administration regularly (41%, n = 69) or occasionally (49%, n = 82). Mean Involvement Evaluation Questionnaire score was 32.2 (± 15.27), equivalent to 28.4 (± 13.56) in Germany, 35.6 (± 16.55) in Spain and 33.3 (± 15.15) in the UK. Involvement Evaluation Questionnaire scores were higher for caregivers who reported hostile (41.7 ± 17.07) lack of control (40.3 ± 16.35) and violent (39.5 ± 16.40) patient behaviours when agitated. Over excitement (31.8 ± 15.05), restless (32.6 ± 14.77) and tense (32.9 ± 15.64) behaviours were associated with a lower Involvement Evaluation Questionnaire score.; Conclusions: Caregivers are active participants in the recognition and management of agitation episodes. The substantial burden reported by these caregivers is impacted by factors including the number of hours of care provided, patient behaviours and country. These may be viable targets for effective interventions to reduce caregiver burden.
Background: Older people with multi-morbidity are major users of healthcare and are often discharged from hospital with ongoing care needs. This care is frequently provided by informal caregivers and the time immediately after discharge is challenging for caregivers with new and/or additional tasks, resulting in anxiety and stress.; Aim: This study aimed to describe mental health, with particular reference to anxiety and depression and reactions to caregiving, and to investigate any associations between the two, in next of kin of older people with multi-morbidity after hospitalisation. It also aimed to explore the association between the demographic characteristics of the study group and mental health and reactions to caregiving.; Methods: This was a cross-sectional questionnaire study using the Hospital Anxiety and Depression Scale and the Caregiver Reaction Assessment. The study group consisted of 345 next of kin of older people (65+) with multi-morbidity discharged home from 13 medical wards in Sweden. Data were analysed using descriptive and analytical statistics. To identify whether reactions to caregiving and next of kin characteristics were associated with anxiety and depression, a univariate logistic regression analysis was performed.; Results: More than one quarter of respondents showed severe anxiety and nearly one in 10 had severe depressive symptoms. The frequencies of anxiety and depression increased significantly with increased negative reactions to caregiving and decreased significantly with positive reactions to caregiving. Regarding caregiving reactions, the scores were highest for the positive domain Caregiver esteem, followed by the negative domain Impact on health. Women scored significantly higher than men on Impact on health and spouses scored highest for Impact on schedule and Caregiver esteem.; Conclusions: Nurses and other healthcare professionals may need to provide additional support to informal caregivers before and after discharging older people with significant care needs from hospital. This might include person-centred information, education and training.
Caring for offspring diagnosed with eating disorders (EDs) puts caregivers under high levels of chronic stress, which have negative consequences for their health. Unfortunately, caregivers have received little attention from mental health professionals. Chronic stress experienced by informal caregivers has been associated with the alteration of body homeostasis, and therefore, the functioning of various physiological systems. This could be the basis of health problems in informal caregivers of people with EDs. The main objective of this study was to analyze physiological response, in terms of heart rate (HR) and heart rate variability (HRV), to an acute laboratory stressor in a sample of informal caregivers of individuals with anorexia nervosa (n = 24) compared to a sample of noncaregivers (n = 26). In addition, the relationship between depressive mood and the aforementioned cardiovascular response parameters was analyzed in the group of caregivers. Caregivers had higher high-frequency (HF) power HRV, and lower HR, low-frequency (LF) power HRV and LF/HF ratio values than noncaregivers, which suggests lower cardiovascular reactivity to the acute stressor than noncaregivers. Moreover, a blunted HR response to stress was associated with high depressive mood scores in caregivers. Hence, it seems that the worse the mood the lower the cardiovascular reactivity to stressful events in this population. Developing and implementing psychotherapeutic interventions focused on stress management would help caregivers to reduce their stress levels and cope more effectively with stressors.
Caregivers have to cope repeatedly with acute stressors in their daily lives, and this is associated with disturbances in the hypothalamic-pituitary-adrenal (HPA) axis and the immune system. Such disturbances could contribute to the development of health problems in informal caregivers of people with chronic illnesses, such as eating disorders (EDs). The main objective of this study was to examine endocrine (salivary cortisol levels (Csal)), immune (immunoglobulin-A (IgA)), and psychological (anxiety, mood, and anger feelings) responses to an acute psychological stressor in a sample of informal caregivers of individuals with EDs compared to a sample of non-caregivers. In addition, it also aimed to analyze the potential relationship of the aforementioned endocrine and immune response parameters with psychological variables in the caregivers. Caregivers had lower Csal and IgA levels at all assessment points except baseline. Moreover, they also exhibited lower Csal and IgA responses and greater worsening of mood in response to acute psychosocial stress than the non-caregivers, which suggests that caregivers had dampened endocrine and immune reactivity to acute stress. On the other hand, endocrine and immune parameters were unrelated to psychological variables. These findings advance our understanding of how a chronically stressed population reacts to acute stress, and should be considered for the development of effective interventions focused on stress management that could help caregivers to reduce their stress levels, which, in turn, would improve their health.
Aims In occupational settings, burnout is a common response to chronic exposure stressors and has been frequently documented in formal caregivers (i.e. paid psychiatric staff). However, the literature is limited on reports of burnout among informal caregivers and particularly within early psychosis groups. The current study sought to investigate reports of burnout in carers of young adults treated within a specialist early psychosis service and links with key appraisals reported about the illness and coping. Methods Seventy-two carers completed the Maslach Burnout Inventory along with self-report measures of coping styles and illness beliefs. Results Seventy-eight per cent of carers reported high burnout in at least one of the three key burnout markers (i.e. emotional exhaustion, depersonalization or low personal accomplishment). Seven per cent of carers met full criteria for high burnout across all the three domains. A carer's belief about the negative consequences of the illness for themselves was a significant predictor of emotional exhaustion and depersonalization. Low personal accomplishment was linked to a carer's less optimistic beliefs about the illness timeline and fewer reports of adaptive coping. Conclusions The results provide preliminary support for the importance of asking carers in the early illness phase about their experiences of caregiving. Targeted assessment may serve as a helpful tool to identify and intervene with carers in need of additional support with stress management, use of adaptive coping strategies, and balanced recovery focused information about psychosis.
Objective: Anxiety and depression are highly prevalent in patients with COPD and their informal carers, and associated with numerous risk factors. However, few studies have investigated these in primary care or the link between patient and carer anxiety and depression. We aimed to determine this association and factors associated with anxiety and depression in patients, carers, and both (dyads), in a population-based sample.; Materials and Methods: This was a prospective, cross-sectional study of 119 advanced COPD patients and their carers. Patient and carer scores ≥8 on the Hospital Anxiety and Depression Scale defined symptoms of anxiety and depression, χ2 tests determined associations between patient and carer symptoms of anxiety/depression, and χ2 and independent t-tests for normally distributed variables (otherwise Mann-Whitney U tests) were used to identify other variables significantly associated with these symptoms in the patient or carer. Patient-carer dyads were categorized into four groups relating to the presence of anxious/depressive symptoms in: both patient and carer, patient only, carer only, and neither. Factors associated with dyad symptoms of anxiety/depression were determined with χ2 tests and one-way analysis of variance for normally distributed variables (otherwise Kruskal-Wallis tests).; Results: Prevalence of symptoms of anxiety and depression was 46.4% (n=52) and 42.9% (n=48) in patients, and 46% (n=52) and 23% (n=26) in carers, respectively. Patient and carer symptoms of anxiety/depression were significantly associated. Anxious and depressive symptoms in the patient were also significantly associated with more physical comorbidities, more exacerbations, greater dyspnea, greater fatigue, poor mastery, and depressive symptoms with younger age. Symptoms of carer anxiety were significantly associated with being female and separated/divorced/widowed, and depressive symptoms with younger age, higher educational level, and more physical comorbidities, and symptoms of carer anxiety and depression with more unmet support needs, greater subjective caring burden, and poor patient mastery. Dyad symptoms of anxiety/depression were significantly associated with greater patient fatigue.; Conclusion: Symptoms of anxiety and depression in COPD patients and carers are significantly associated. Given their high prevalence, considerable impact on mortality, impact on quality of life and health care use, and associations with each other, screening for and addressing patient and carer anxiety and depression in advanced COPD is recommended.
Objectives: To determine if providing informal care to a co-resident with dementia symptoms places an additional risk on the likelihood of poor mental health or mortality compared with co-resident non-caregivers.; Design: A quasi-experimental design of caregiving and non-caregiving co-residents of individuals with dementia symptoms provides a natural comparator for the additive effects of caregiving on top of living with an individual with dementia symptoms.; Methods: Census records, providing information on household structure, intensity of caregiving, presence of dementia symptoms and self-reported mental health were linked to mortality records over the following 33 months. Multi-level regression models were constructed to determine the risk of poor mental health and death in co-resident caregivers of individuals with dementia symptoms compared with co-resident non-caregivers, adjusting for the clustering of individuals within households.; Results: The cohort consisted of 10 982 co-residents (55.1% caregivers), with 12.1% of non-caregivers reporting poor mental health compared with 8.4% of intense caregivers (>20 h of care per week). During follow-up, the cohort experienced 560 deaths (245 to caregivers). Overall, caregiving co-residents were at no greater risk of poor mental health but had lower mortality risk than non-caregiving co-residents (adjusted odds ratio (ORadj) = 0.93, 95% confidence interval (CI) 0.79, 1.10 and ORadj = 0.67, 95% CI 0.56, 0.81, respectively); this lower mortality risk was also seen amongst the most intensive caregivers (ORadj = 0.65, 95% CI 0.53, 0.79).; Conclusion: Caregiving poses no additional risk to mental health over and above the risk associated with merely living with someone with dementia and is associated with a lower mortality risk compared with non-caregiving co-residents.
Background: In studies enrolling informal caregivers of patients in palliative care, it is necessary to ensure that findings are not influenced by factors such as mental disorders.; Aim: This study aims to describe the influence of anxiety and depression on bereaved informal caregivers' retrospective ratings of the quality of dying and death (QoDD) of their loved ones.; Design: Informal caregivers of deceased patients from 2 German palliative care (PC) units took part in a validation study of the German version of the original QoDD-Deutsch-Angehörige (QoDD-D-Ang) during the fourth week following the patient's death at the earliest. Depressive and panic disorders were assessed via the Patient Health Questionnaire (PHQ). Group comparisons (χ2, t test; significance level P < .05) analyzed whether informal caregivers with depression or panic disorders and those without such disorders differ in their estimates.; Results: A total of 226 informal caregivers participated between August 2012 and December 2013. The mean age of participants was 55.5 years; 61.1% were female. The PHQ of 221 participants resulted in 8.6% with major disorders, 13.6% with other depressive syndromes, and 77.8% without depressive disorders. In this secondary data analysis here, there was no difference between female and male participants concerning the incidence of depression ( P = .519, χ2). Two participants screened positive for both panic and major depressive disorders. Both groups presented no significant differences in the mean total QoDD-D-Ang scores ( P = .343).; Conclusion: Informal caregivers' estimates on the QoDD-D-Ang of their significant others do not interfere with mental disorders. Therefore, bereaved informal caregivers are able to participate in the PC research after a few weeks following the loss of a loved one.
Informal caregiving can be fundamental to disease management. Yet, the psychosocial, physical, and financial burden experienced by caregivers can be significant. In the US, Latinos experience increasing rates of chronic conditions, the highest uninsured rates in the country, and a growing dependence on informal caregivers. This article explores the impact of caregiving on caregivers of individuals with comorbid chronic disease and depression. Findings highlight the impact of caregiving on financial insecurity, balancing competing demands, increased emotional distress, and community supports. Findings support the inclusion of caregivers in disease management programs to enhance psychosocial outcomes for both caregivers and their patients.
The shift in care from long-term hospitalization of individuals with mental illness to the community places a greater onus of responsibility on informal caregivers. The purpose of the current study was to explore the lived experiences of long-term caregivers of individuals with unipolar depression. A qualitative phenomenological methodology was used and two sets of semi-structured interviews were conducted with nine informal caregivers. Data were transcribed following Giorgi's phenomenological method. The following three themes were identified: Flooded by Emotions, Personal Growth and Satisfaction, and Psychosocial Effects and Challenges. Caregivers described adapting by adjusting their behavior to avoid conflict with care recipients. These adjustments had a detrimental effect on their well-being, where they described that they were "existing but not living." These findings highlight the need for ongoing support, which should be tailored to the unique needs and concerns of individuals who are providing long-term care to individuals with depression.
Affiliated stigma often refers to internalized stigma among family members of stigmatized individuals. This study aimed to investigate the relationship between affiliate stigma and quality of life (QOL) among primary caregivers of individuals with mental illness undergoing treatment at the Institute of Mental Health, Singapore. Three hundred and fifty caregivers were recruited for the study. The World Health Organization Quality of Life questionnaire (WHOQOL-BREF) and Family Stigma Scale (FSS) were administered to the primary caregivers of patients with mental illness. Multiple linear regression analyses were conducted to investigate the association of affiliate stigma with QOL. A high proportion of caregivers of individuals with mental illness experience affiliate stigma in Singapore. All four QOL domains were significantly associated with affiliate stigma. These findings entail that it is imperative to improve public's perception of those with mental illness to reduce stigmatization and thus improve caregiver's QOL.
Background: The recent policy of deinstitutionalization of health care in Western countries has resulted in a growing number of people - including elderly - with severe mental illness living in the community where they rely on families and others for support in daily living. Caregiving for partners, parents, children, and significant others can be a stressful experience and has been associated with psychosocial problems and poorer physical health. To support caregivers, a new, complex, nurse-led caregiver - centered intervention was developed. The intervention focuses on preventing deterioration in the wellbeing of caregivers. The objective of this study is to obtain a better understanding of the potentials of this new intervention. Methods: We applied an interpretative qualitative field study at two Dutch mental health care institutes. Thirteen caregivers participated in a one-time semi-structured interview. Results: From the caregivers' perspective, a trusting relationship between caregivers and the mental health nurse is an essential condition for the depth and hence the effectiveness of the caregiver-centered counseling intervention. In this trusting relationship three overlapping and mutually reinforcing phases were identified (1) phase of engagement, (2) recognition of personal needs and (3) hope and optimism. Each phase encompasses key experiences that enhanced trust in that phase. Conclusions: Collaborative relationships between caregivers and mental health nurses provide a framework in which the mental health nurse can assess and help not only patients but also caregivers to gain insight into their situation and take on new roles and responsibilities in ways that promote their wellbeing.
Keshet, a course for family members of persons’ coping with mental illness, was developed to enhance positive family cognitive communication skills. Improving communication with the use of mediation techniques, primarily used by therapists, creates a learning environment viewed as a strategy of Knowledge Translation. To examine the effectiveness of Keshet in improving attitudes, problem solving, communication skills and attenuation of burden a quasi-experimental research design was applied with study and control condition. The same group of participants (N = 38) completed questionnaires at different stages: 3 months prior to course, initiation and completion. Following participation, significant changes were observed in attitudes regarding knowledge of how to cope and interact with family member. A correlation was found between improved knowledge and decline in burden. Implementing interventions which provide caregivers with professional “know-how” leads to lessened burden, thus contributing to maintaining well-being of family caregiver population.
Background: As with most of the chronic illnesses, the changes and consequences brought on by bipolar disorder (BD) are not exclusive to the patient and often spread to those around them, especially for direct caregivers of these patients. It is known that there is a significant emotional and physical toll among persons who coexist daily with those who suffer from this disorder. Objective: Aware of the importance of the role played by informal caregivers (especially the family) in the stability and evolution of patients with bipolar disorder, this study seeks to explore the perception that family members responsible for bipolar persons have of themselves as caregivers of these patients. Method: This is a qualitative study using a phenomenological design, for which the technique of focused or semi-structured interviews was employed. Ten caregivers of people with diagnosis of BD agreed to participate. Results: Within the family, it is a single individual who has the role of caregiver. Experiences and meanings that are generated into the nucleus of the patient–caregiver relationship are full of ambivalence and involve many aspects worthy of analysing, such as the development of identities, the feminization of patient care, the process of therapeutic decision-making and the evolution of the disease. Conclusions: It is necessary to integrate evaluation and attention for patients’ caregivers, recognizing them as individuals and elucidating their constructed meanings and the dynamics established in their relationship with patients. In this way, there would be a more integrative clinical approach of the patient–caregiver relationship, considering not only the necessary pharmacological treatments but also accompanying both patient and family, along the path they travel as they experience BD.
Background: Families living with a person with mental illness can experience distress requiring therapeutic interventions. Web-based mindfulness interventions have shown beneficial health outcomes for both clinical and healthy populations, and may help families cope and overcome barriers that can otherwise hinder a help-seeking process.; Aims: To develop and assess outcomes of a web-based mindfulness intervention for families living with a person with mental illness.; Methods: A pilot study investigating an 8-week web-based mindfulness intervention with a pre-post design and follow-up after 3 months, with mindfulness as the primary outcome and perceived stress, caregiver burden and self-compassion as secondary outcomes. The study included a sample of 97 persons approached by advertisement in newspapers, newsletters, and online.; Results: The study showed significant improvements in levels of mindfulness post-intervention and at follow-up as well as significant improvements in levels of perceived stress, caregiver burden, and self-compassion both post-intervention and at follow-up.; Discussion: Acceptability and feasibility of the intervention were high, outcomes were relevant, and the intervention showed positive and significant results supporting the hypothesis that the intervention may help families cope with a stressful situation.; Conclusion: Further randomized controlled studies of the intervention are needed to investigate the intervention's effectiveness, including dose-effect studies.;
Background: Almost 40 million family caregivers care for a loved one with severe physical or cognitive impairments. The purpose of this review is to summarize evidence about the benefits of interventions to support or involve family members/caregivers of patients with trauma-related injury on caregiver, patient, and household outcomes. Methods: English-language peer-reviewed publications in MEDLINE, CINAHL, and PsycINFO from 1995 through December 2016 were identified. Eligible studies included RCT or quasi-experimental studies evaluating interventions designed to support or involve caregivers or family members of patients with TBI, PTSD, or polytrauma. Abstractions were completed by one reviewer and checked by a second; two reviewers independently assessed risk of bias using the Cochrane Effective Practice and Organization of Care Review Criteria. Results: Thirteen studies (n = 9 TBI; n = 4 PTSD, n = 0 polytrauma) evaluated psychological or rehabilitation interventions involving caregivers. Interventions did not improve TBI patients' functional status (standardized mean difference [SMD], 0.29 [95% confidence interval [CI], - 0.51 to 1.08]) or psychological symptoms (SMD - 0.25, CI - 0.62 to 0.12). Qualitative analysis shows potential intervention benefit for TBI symptoms. Interventions did not improve TBI caregiver psychological symptoms (SMD - 0.26, CI - 0.57 to 0.05); however, qualitative analysis suggests mixed effects for caregiver burden and quality of life. Positive intervention effects on patients' PTSD symptoms, mental health service use, and PTSD caregivers' psychological symptoms were identified with certain interventions. Strength of evidence ranged from moderate to very low. Discussion: Studies showed mixed patterns of intervention effects on caregiver and patient outcomes; evidence about intervention impact is inconclusive. This review is the first to identify caregiving interventions for patients with TBI and polytrauma and extends past reviews about patients with PTSD. Limitations include a small evidence base, low study quality, disparate methods, varied outcome measures, and high heterogeneity. PROSPERO Registration CRD42017053516.
The VA Program of Comprehensive Assistance for Family Caregivers (PCAFC) provides landmark support for family caregivers of post-9/11 veterans. This study examines PCAFC support for veterans with and without PTSD and assesses whether program effect differs by PTSD status using a pre-post, non-equivalent, propensity score weighted comparison group design (n = 24,280). Veterans with and without PTSD in PCAFC accessed more mental health, primary, and specialty care services than weighted comparisons. PCAFC participation had stronger effects on access to primary care for veterans with PTSD than for veterans without PTSD. For veterans with PTSD, PCAFC support might enhance health service use.
Objective: Caregivers experience physical and mental stress that ends up lowering their quality of life (QoL). Our goal was to research (a) the level of caregivers QoL; (b) the relationships between the demographic characteristics of the caregivers, their caregiving burden, their family functioning, their social and professional support and their QoL and (c) the best predictors of caregivers QoL. Methods:100 key caregivers (70% parents, 8% spouses, 17% siblings and 5% children) were studied using the world health organization quality of life-Bref (WHOQOL-BREF) to research their QoL, the Zarit Scale to assess their perception of their caregiving burden, the Social Network Questionnaire to examine their social support, the Family APGAR to assess the satisfaction with social support from the family and a professional support scale (Escala de Apoyo Profesional) to determine the professional support received by caregivers was performed. Results: Scores on the WHOQOL-BREF in the Physical, Psychological, Social and Environment domains were 15.0 (SD = 3.7), 13.3 (SD = 4.2), 11.0 (SD = 4.7) and 13.5 (SD = 3.1), respectively. Through bivariate analysis, the dimensions that showed a positive significant association with QoL were being a young male caregiver who was a working father with a high educational level and help from other family members. Caregivers of patients who were older and had a later onset of the illness, a lower score on the Zarit Scale and a high score on the Social Network Questionnaire, Family APGAR and Escala de Apoyo Profesional showed higher QoL. Many of these variables made a unique contribution in the multivariate analysis. Conclusions: There is a significant association between the caregiver’s burden and their QoL. Regression analysis showed that the best predictors of QoL were caregiving burden, social support and professional support.
Aims and objectives: To explore the experiences of female spousal caregivers in the care of husbands with severe mental illness. Background: Family involvement in the care of patients with chronic illness is essential to provide a backbone of support for them. However, little is known about how female spousal caregivers are confronted with challenges while taking care of their husbands with severe mental illness. Design: An exploratory qualitative study. Methods: Fourteen female spousal caregivers of people with severe mental illness (defined here as schizophrenia, schizoaffective disorders and bipolar affective disorders) were recruited using purposive sampling and were interviewed using a semistructured in‐depth interview method. Data were analysed by conventional content analysis until data saturation was achieved. Results: Care of a husband with severe mental illness had a disruptive influence on the emotional relationships of the family and resulted in emotional detachment over time. Despite the caregivers’ struggle to protect their families, the lack of supportive resources caused emotional exhaustion. Caregiving tasks interfering with their many other responsibilities, along with being a reference for family matters, led to loss of self. Consequently, they experienced psychological distress because of the transition to a caregiver role without any supportive resources. Conclusion: Constant caring, without supportive resources, forced them to do various roles and manage other issues within the family. Being unprepared for a caregiving role led to the psychological distress of female spousal caregivers. Therefore, adequate information, education and supportive resources must be provided for spouses to facilitate their transition to caregiving roles. Relevance to clinical practice: It is necessary to pay close attention to the spousal caregivers’ own mental health problems while they care for their mentally ill husbands. Mental health professionals should adopt a new approach to the prioritisation and planning of policies that support both family caregivers and patients.
Basic knowledge regarding schizophrenia, having positive attitudes towards it, and possessing the necessary care skills are crucial aspects for caregivers have in order to provide sustainable care for a relative with schizophrenia. Coaching can facilitate successful caregiving through the understanding of a caregiver's knowledge, attitudes, and skills. This study examined the effectiveness of a coaching program in enhancing family caregivers' knowledge, attitudes, and skills related to caring for persons with schizophrenia. 100 primary family caregivers were randomly recruited. Of these, 50 participated in a coaching program, which lasted 7 weeks and employed implementation methods such as discussion, watching videos, providing information, training, observation, demonstration, role-plays, and telephone follow-ups. The coaching group participants showed significantly higher knowledge levels (F = 85.77, p < 0.001), lower levels of negative attitudes towards schizophrenia (F = 13.22, p < 0.001), and higher skill levels (F = 22.94, p < 0.001) than those in the routine care group. The results also discovered significant improvements in knowledge, attitudes, and caregiving skills on follow-ups at week 2 and 1 month after the completion of the program in the coaching group, as compared to those in the routine care group (p <0.001). The coaching program examined in this study clearly indicated positive effects on caregiver knowledge, attitudes, and caregiving skills when compared with routine care.
Background: Crisis resolution teams (CRTs) can provide effective home-based treatment for acute mental health crises, although critical ingredients of the model have not been clearly identified, and implementation has been inconsistent. In order to inform development of a more highly specified CRT model that meets service users' needs, this study used qualitative methods to investigate stakeholders' experiences and views of CRTs, and what is important in good quality home-based crisis care. Method: Semi-structured interviews and focus groups were conducted with service users (n = 41), carers (n = 20) and practitioners (CRT staff, managers and referrers; n = 147, 26 focus groups, 9 interviews) in 10 mental health catchment areas in England, and with international CRT developers (n = 11). Data were analysed using thematic analysis. Results: Three domains salient to views about optimal care were identified. 1. The organisation of CRT care: Providing a rapid initial responses, and frequent home visits from the same staff were seen as central to good care, particularly by service users and carers. Being accessible, reliable, and having some flexibility were also valued. Negative experiences of some referral pathways, and particularly lack of staff continuity were identified as problematic. 2. The content of CRT work: Emotional support was at the centre of service users' experiences. All stakeholder groups thought CRTs should involve the whole family, and offer a range of interventions. However, carers often feel excluded, and medication is often prioritised over other forms of support. 3. The role of CRTs within the care system: Gate-keeping admissions is seen as a key role for CRTs within the acute care system. Service users and carers report that recovery is quicker compared to in-patient care. Lack of knowledge and misunderstandings about CRTs among referrers are common. Overall, levels of stakeholder agreement about the critical ingredients of good crisis care were high, although aspects of this were not always seen as achievable. Conclusions: Stakeholders' views about optimal CRT care suggest that staff continuity, carer involvement, and emotional and practical support should be prioritised in service improvements and more clearly specified CRT models.
Aim: We aimed to systematically review the evidence of the effectiveness of family interventions for caregivers of people with recent‐onset psychosis compared with usual psychiatric care. A secondary objective was to directly compare the effects of different types of family interventions. Methods: MEDLINE, EMBASE, PsycINFO, Cochrane Central Register of Controlled Trials (CENTRAL), CINAHL Complete and EBSCOhost were searched to identify relevant randomized controlled trials. Trial data were extracted following the procedures described in the Cochrane Handbook of systematic reviews. Random‐effects models were used to pool the intervention effects. Results: Twelve studies including 1644 participants were included in this review. With the exception of a high risk of performance bias inherent to the nature of the psychosocial interventions, the studies had an overall low or unclear risk of bias, suggesting that sources of bias are unlikely to lower confidence in the estimate of intervention effects. Meta‐analyses were conducted for 4 different participant outcomes reported in 9 studies. Compared with usual psychiatric care, family intervention was more effective in reducing care burden over all follow‐up periods. Family intervention was also superior to usual care with regards to caregiving experience in the short term and improved utilization of formal support and family functioning over longer‐term follow up. Mutual support is more effective than psychoeducation in improving family functioning when measured 1 to 2 years after the intervention but had equivalent effects on utilization of formal support services. Conclusions: This review provides evidence that family intervention is effective for caregivers of recent‐onset psychosis, especially for care burden where the positive effects are enhanced over time.
Family interventions have been emphasized in the treatment of bipolar disorder (BPD) due to the bidirectional and entangled relationships between patients and the family system, and have benefits for patients’ symptoms and health; however, the effects of family interventions on family function and caregivers’ health‐related outcomes have not been well investigated. This randomized, controlled trial with 47 hospitalized patients with BPD/family caregiver dyads at a medical centre in northern Taiwan compared the effects of a brief family‐centred care (BFCC) programme with treatment as usual (TAU). All of the family caregivers in two groups were invited to attend a routine 60‐min family discussion group about violence and suicide prevention. The TAU group without specific family interview for patient and family caregiver dyad. In the BFCC group, four 90‐min BFCC programme sessions were additionally provided twice a week for each hospitalized family dyad. We hypothesized that, first, family caregivers in the BFCC group could increase their family function, and second, improve perceived health status and reduce caregiver's burdens compared to the TAU. The results showed that family caregivers in the BFCC group significant interaction effects in overall family function (P = 0.03) and subscale conflict (P = 0.04), communication (P = 0.01), and problem‐solving (P = 0.04), but there were no significant interaction effects on the caregivers’ perceived health status and caregivers’ burdens. Our findings support both the feasibility of using the BFCC programme for inpatients and its specific benefits for family function. An intensive family intervention during hospitalization has been suggested in psychiatric practice to support patients with BPD and family caregivers.
There have been several violence-related deaths in Japan due to family violence by persons with severe mental illness against their caregivers. However, it is not often acknowledged that these violent acts are mainly directed at family members. This study aimed to clarify what acts of violence family caregivers experienced from their relative with schizophrenia, and how frequently these violent incidents occurred in their lifetime. We also examined caregivers’ thoughts of death about themselves and their relatives, as well as their consultation efforts and escape from the violence perpetrated by their relative. Of the 277 caregivers, 87.7% had experienced psychological violence and 75.8% had experienced physical violence perpetrated by their relative. Of 210 caregivers who had experienced physical violence, 26.7% had thought of murder-suicide and 31.0% had wished for their relative’s death. Family violence by persons with schizophrenia is not rare but a common occurrence in Japan and may have fatal consequences.
Personal budgets aim to increase choice and independence for people with social care needs but they remain underused by people with mental health problems compared to other disability groups. The use of personal budgets may impact on families in a variety of ways, both positive and negative. This paper draws on interviews, undertaken in 2012-2013 with 18 family carers and 12 mental health service users, that explored experiences of family involvement in accessing and managing personal budgets for a person with mental health-related social care needs. The sample was drawn from three sites across England, with additional carers being recruited via voluntary sector networks. Our findings show that for many people with severe mental health needs who lack motivation and confidence to negotiate access to personal budgets, carers may provide the necessary support to enable them to benefit from this form of social care support. We illustrate the role carers may play in initiating, pursuing and maximising the level of support available through personal budgets. However, some carers interviewed considered that personal budget funding was reduced because of practitioners' assumptions about carers' willingness and ability to provide support. We also report perceived tensions between family carers and practitioners around appropriate involvement in decision-making. The study findings have implications for local authorities, practitioners and family carers in supporting the involvement of family carers in support for people with severe mental health problems.
Family members continue to be the predominant providers of support, care and accommodation for loved ones with mental health issues, and empirical studies suggest that accessing mental health respite can be helpful for both carers and consumers. However, the availability of, and access to, this respite in Australia is far from optimal. Major issues have also been identified such as low utilisation, the inappropriate and inflexible nature of services and the inability of services to respond to situations where multiple needs exist. This article presents findings from a small evaluation of a pilot residential respite service. Semi‐structured interviews were conducted with eight family members/carers and four consumers using the service, and five service providers. In addition, anonymised sociodemographic information about all users of the service in the first 9 months of its operation were analysed. Reflecting the current limitations around respite options, the majority of family members/carers and consumers were appreciative of, and satisfied with, the service. The research highlighted issues such as availability and suitability of respite, particularly when consumers had multiple and unmet needs. Mental health residential respite is often a stopgap in crisis situations and intersects with the difficulty of planning respite and shortages in affordable supported accommodation. Furthermore, the ramifications of individualised funding for people with “psychosocial disability” in the new Australian National Disability Insurance Scheme (NDIS) remain unclear. While family members and carers may benefit indirectly from NDIS funding, it is especially important at this time that the need for more suitable, recovery‐oriented respite services is highlighted.
Background: Carers are family members or friends who support people with a mental health problem without being paid. Carer involvement in mental health treatment has been consistently supported by research evidence and promoted by policies but its implementation rates are poor. Particularly when patients are treated in inpatient units, carers often report being left without information or being excluded from decisions about treatment. In this study we have explored, along with staff perspectives, views of patients and carers who had a recent experience of inpatient mental health care on how to improve the implementation of carer involvement in inpatient care. Methods: Sixteen focus groups were held with carers, patients and clinicians in London, United Kingdom. We included staff working in inpatient units and patients and carers who had experience of inpatient care in the last five years. Data from focus groups were analysed using thematic analysis. Results: Eighty six participants in total (31 service users, 22 carers and 33 clinicians) attended the focus groups. Participants identified that generally, carer involvement should happen as soon as possible after admission, although this may be challenging in some cases. Carer involvement should include receiving information, participating in decisions about care and discharge and receiving emotional support by staff. When carers are involved, their personal knowledge of the patient's condition should be utilised. Challenges to carer involvement may include problems with identifying carers during a mental health crisis, obtaining valid patient consent, sharing appropriate information, and contacting and engaging carers. Additionally, it was perceived that all the ward staff need to be actively engaged in order to make carer involvement happen and this cannot be left only to specifically trained clinicians. Conclusions: These findings identify basic components that all family interventions in inpatient units should have. Further studies are needed to explore how and if purposively designed clinical interventions can improve carer involvement in inpatient treatment and, consequently, patient outcomes.
The broad spectrum of problems caused by caring for a patient with mental illness imposes a high burden on family caregivers. This can affect how they cope with their mentally ill family members. Identifying caregivers' experiences of barriers to coping is necessary to develop a program to help them overcome these challenges. This qualitative content analysis study explored barriers impeding family caregivers' ability to cope with their relatives diagnosed with severe mental illness (defined here as schizophrenia, schizoaffective disorders, and bipolar affective disorders). Sixteen family caregivers were recruited using purposive sampling and interviewed using a semi-structured in-depth interview method. Data were analyzed by a conventional content analytic approach. Findings consisted of four major categories: the patient's isolation from everyday life, incomplete recovery, lack of support by the mental health care system, and stigmatization. Findings highlight the necessity of providing support for caregivers by the mental health care delivery service system.
Objectives: Available data suggest high burden on caregivers of patients with bipolar disorder (BD), yet the well-being of patients with BD increasingly depends on family members, partners and close friends. As patients with BD get older, the need for informal care may shift. We aimed to describe the caregivers of older adults with BD (OABD) and explore what patients' and caregivers' characteristics are associated with caregiver burden. Method: Forty-seven caregivers of OABD were questioned about their perceived burden and depressive symptoms. Linear regression analyses were performed to examine the influence of various patients' and caregivers' characteristics on caregiver burden or depression. Results: More than half of all caregivers experienced some degree of burden, and 6.4% reported depressive symptoms. The number of psychiatric admissions and social functioning were the only patients' characteristics associated with higher burden. Caregiver burden was significantly associated with caregiver's other obligations. None of the patient or caregiver characteristics was significantly associated with depression in caregivers of OABD. Conclusion: In OABD, even with few residual symptoms, more than half of all caregivers experience substantial burden. Future studies are needed to confirm if improving social functioning and preventing psychiatric hospitalizations decrease the burden on the caregivers of OABD.
The aim of this study was to determine the relation among anxiety and family burden in primary first-degree relative caregivers of outpatients with mental disorders in Turkey. Data were collected with patients'primary first-degree relative caregivers via the Information Form, Beck Anxiety Inventory (BAI), and Perceived Family Burden Scale (PFBS). In all, 481 caregivers (325 women and 156 men) participated in this study. Based on this study's results, primary caregivers of patients with mental disorders had a moderate level anxiety, and as anxiety increased, family burden also increased. Those results suggest that mental health nurses should plan interventions not only for patients, but also for their family member or their caregivers to decrease anxiety level.
Background: In Turkey, individuals with schizophrenia usually live with their families. Therefore, families are main caregivers and face psychological, financial and social problems. Aim: The aim of this study is to understand the personal burdens and coping strategies, and social support affecting the families that provide care to the individuals with schizophrenia. Methods: In-depth interviews were conducted with 31 members of 12 families. Results: Four themes were formed: learning and accepting the disorder, caregiving, social dimensions and service dimensions. Families have a problem with accepting this order and caregiving affects their quality of life both financially and socially. As schizophrenia is one of the reasons for being isolated from community, families prefer hiding it. Although families are satisfied with community-based systems, they need long-term solution, training and financial aid. Conclusions: To reduce the burden, family therapies, education and psychological support should be provided for families, and job opportunities, long-term caregiving services and psychological support should be provided for individuals with schizophrenia.
Aims and Objectives: To examine the relationship between psychiatric patients' caregiver burden and anger expression styles.; Background: In the caregiving process, when coping with problems, caregivers may exhibit emotional and behavioural responses, which can produce distressful results. One of these responses is angry. Examining the relationship between psychiatric patients' caregiver burden and caregivers' anger expression styles is necessary for quality of care.; Design: A descriptive and relational study.; Methods: The sample for study included 60 family caregivers who were stayed with patient in psychiatry clinic during the treatment of inpatient setting of a university hospital. Data for the study were collected using the Caregiver Burden Inventory and the Trait Anger and Anger Expression Scale. The analysis of variance, Mann-Whitney U test, Kruskal-Wallis and Pearson correlation analysis were used.; Results: The caregivers' Caregiver Burden Inventory score was found to be 24.60 ± 1.57. Gender, working status, level of intimacy with patient, status of whether or not caregiver was living with patient and status of whether or not caregiver experienced difficulties in providing care had a significant effect on the Caregiver Burden Inventory scale as a whole, as well as its subscales. This study found a positive relationship between caregiver burden and caregivers' anger expression styles (p < .05, p < .01).; Conclusion: The total Caregiver Burden Inventory mean score of caregivers was concluded to be low, with some introductory characteristics and anger expression styles having an impact on the burden experienced by caregivers.; Relevance To Clinical Practice: Knowing the anger expression styles of caregivers is important for reducing caregiver burden and improving quality of care.; © 2017 John Wiley & Sons Ltd.
Background: Caregiving in schizophrenia is a demanding and exhausting activity that challenges the physical and emotional resources of family caregivers. In traditional societies such as India, this is further compounded by illiteracy, ignorance and religious and cultural explanations attributed to mental illness.; Aims: This study aimed to assess primary caregivers of persons with schizophrenia in terms of their perceived burden, manifestation of psychological distress and quality of life (QOL).; Methods: The study used a quantitative cross-sectional design and survey methodology to collect data from caregivers in a hospital setting in Thanjavur, India. Standardized instruments were used to collect data from patients and their caregivers.; Results: High perceived burden and lower QOL were seen in the majority of caregivers. They also manifested high levels of anxiety and depression. Patient characteristics such as age, gender, symptoms and duration of illness did not influence the perceived burden of caregivers, while positive and negative symptoms and the duration of illness were correlated with their QOL.; Conclusions: Findings indicate the need for intervention for family caregivers to enable them cope more effectively with the demands of caregiving. Psychoeducation and participation in peer support groups are advocated as low resource and effective outcome strategies for caregivers in India.;
Purpose: Aim of the study is to evaluate the predictive power of Expressed Emotion in Schizophrenia relapse in Pakistan. Method: A longitudinal study was conducted comprising 53 in-patients' sample diagnosed with Schizophrenia and their 101 key carers. Participants fulfilled DSM-IV-TR criteria for Schizophrenia based on Structural Clinical Interview for the DSM-IV diagnosis. Symptomatic status was measured through Brief Psychiatric Rating Scales-Expanded (BPRS-E). Caregivers' level of EE was assessed through Camberwell Family Interview (CFI). Patients were followed up for 9 months after hospital discharge.Results: Relapse rate for patients with high-EE household was 72% as compared with 36% in the low-EE household. Logistic Regression showed a positive relationship between high-EE and relapse (CI 0.06-0.80; p < 0.05). Both hostility and critical comments emerged as significant predictors of relapse. The odds ratio showed that a one unit increase in caregivers' score on the CCs and hostility scales were associated with a 1.29 (CI 1.06-1.56; p < 0.05) and 1.89 (CI 1.14-3.13; p < 0.05) times increased rate of relapse, respectively. Conversely, a non-significant relationship was observed between EOI and relapse. Conclusions: The findings from this study confirmed the validity of EE construct in predicting schizophrenia relapse in a Pakistani sample. However, medication compliance has not been experimentally controlled and that is one of the limitations of the study
Background: Caring for a person with first episode psychosis (FEP) is a challenging and distressing task for the carers. The carers' stress in the early stage of psychosis can increase their expressed emotion (EE) while social support is hypothesized to decrease EE. However, the influence of stress and social support on carers' EE is not well understood in FEP.; Aim: To examine how the stress and social support shape expressed emotion in the carers of FEP.; Methods: Seventy one carers of the patients with non-affective FEP were recruited from the inpatient psychiatry ward of a tertiary mental health care center in South India. The family questionnaire, perceived stress scale and multidimensional scale of perceived social support were used to measure their EE, stress and social support respectively.; Results: Carers experienced high level of perceived stress, EE and poor social support. Perceived stress significantly increased EE (β=0.834; p<0.001) and social support did not significantly influence EE (β=-0.065; p>0.05). Perceived stress predicted 76 percent of the variance on EE (Adjusted R2=0.761).; Conclusion: The results emphasize high level of stress and EE in carers of patients with FEP that implies the need for appropriate psychosocial interventions to manage their stress.; Copyright © 2016 Elsevier B.V. All rights reserved.
Background: There is an expectation in current heath care policy that family carers are involved in service delivery. This is also the case with compulsory outpatient mental health care, Community Treatment Orders (CTOs) that were introduced in England in 2008. No study has systematically investigated family involvement through the CTO process.; Method: We conducted qualitative interviews with 24 family carers to ascertain their views and experiences of involvement in CTOs. The transcripts were subjected to thematic analysis that incorporated both deductive and inductive elements.; Results: We found significant variation in both the type and extent of family carer involvement throughout the CTO process (initiation, recall to hospital, renewal, tribunal hearings, discharge). Some were satisfied with their level of involvement while others felt (at least partly) excluded or that they wanted to be more involved. Some wanted less involvement than what they had. From the interviews we identified key factors shaping carers' involvement. These included: perceptions of patient preference; concern over the relationship to the patient; carers' knowledge of the CTO and of the potential for carer involvement; access to and relationships with health professionals; issues of patient confidentiality; opportunities for private discussions, and; health professionals limiting involvement. These factors show that health professionals have many opportunities to facilitate, or hinder, carer involvement. The various roles attributed to carers, such 'proxy' for patient decision, 'gatekeeper' to services, 'mother' or 'expert carer', however, conflict with one another and make the overall role unclear.; Conclusions: There is a need for clarification of the expectations of carers in individual care situations, for carers to be equipped with the information they need to in order to be involved, and for services to find flexible and innovative ways of ensuring continuous, open communication. The introduction of CTOs in England has not been successful in its ambition for carer involvement.
Background: Low and middle income countries face many challenges in meeting their populations' mental health care needs. Though family caregiving is crucial to the management of severe mental health disabilities, such as schizophrenia, the economic costs borne by family caregivers often go unnoticed. In this study, we estimated the household economic costs of schizophrenia and quality of life of family caregivers in Ghana.; Methods: We used a cost of illness analysis approach. Quality of life (QoL) was assessed using the abridged WHO Quality of Life (WHOQOL-BREF) tool. Cross-sectional data were collected from 442 caregivers of patients diagnosed with schizophrenia at least six months prior to the study and who received consultation in any of the three psychiatric hospitals in Ghana. Economic costs were categorized as direct costs (including medical and non-medical costs of seeking care), indirect costs (productivity losses to caregivers) and intangible costs (non-monetary costs such as stigma and pain). Direct costs included costs of medical supplies, consultations, and travel. Indirect costs were estimated as value of productive time lost (in hours) to primary caregivers. Intangible costs were assessed using the Zarit Burden Interview (ZBI). We employed multiple regression models to assess the covariates of costs, caregiver burden, and QoL.; Results: Total monthly cost to caregivers was US$ 273.28, on average. Key drivers of direct costs were medications (50%) and transportation (27%). Direct costs per caregiver represented 31% of the reported monthly earnings. Mean caregiver burden (measured by the ZBI) was 16.95 on a scale of 0-48, with 49% of caregivers reporting high burden. Mean QoL of caregivers was 28.2 (range: 19.6-34.8) out of 100. Better educated caregivers reported lower indirect costs and better QoL. Caregivers with higher severity of depression, anxiety and stress reported higher caregiver burden and lower QoL. Males reported better QoL.; Conclusions: These findings highlight the high household burden of caregiving for people living with schizophrenia in low income settings. Results underscore the need for policies and programs to support caregivers.
Family and informal caregivers provide a substantial amount of care and support to people who experience mental health problems. The aim of this study was to explore mental health nurses', students' and service users' perceptions of the knowledge, skills and attitudes that are required by mental health nurses to work with families and carers using a qualitative methodology. Three themes emerged from the data: Knowledge of the family and how mental distress affects the family; working with the family – support and education; and valuing the role of the family. The three themes demonstrate the complexity of preparing mental health nurses to work with families and carers, and the article offers recommendations about how this might be achieved.
Aims and Objectives: To examine influencing factors of health-related quality of life in primary family caregivers of people with schizophrenia receiving inpatient psychiatric rehabilitation services.; Background: Families, particularly primary family caregivers, have become more important than ever in mental health care. Yet, research on health-related quality of life among primarily family caregivers is limited.; Design: A correlational study design was used.; Methods: A convenience sample of 122 primary family caregivers participated in the study. Data were analysed with descriptive statistics, Pearson's product-moment correlation, t test, one-way analysis of variance and a hierarchical multiple regression analysis.; Results: Primary family caregivers who were parents, older, less educated, and had a lower monthly household income, increased affiliate stigma and decreased quality of family-centred care experienced poor health-related quality of life. Particularly, monthly household income, affiliate stigma and quality of family-centred care appeared to be the most critical determinants of health-related quality of life.; Conclusions: Efforts to enhance satisfaction of life should focus on reducing affiliate stigma as well as increasing monthly household income and strengthening the quality of family-centred care.; Relevance To Clinical Practice: Findings may assist in the development of culturally integrated rehabilitation programmes to decrease affiliate stigma and increase family engagement as a means of promoting quality of life for primary family caregivers living with people who have schizophrenia.; © 2017 John Wiley & Sons Ltd.
Background: Mental illness is a disease that affects millions of people every year. It not only causes stress to the mentally ill patients, but also for the family members who provide them the care. The family caregivers, therefore need some form of coping strategies in dealing with their mentally ill family members.; Aims: This qualitative study aims at identifying and analysing the coping strategies adopted by the family caregivers in dealing with their mentally ill family members.; Method: A total of 15 family caregivers from the state of Kedah, Malaysia participated in the face-to-face semi structured interview.; Results: The study findings identified an array of coping strategies used by the family caregivers, including religious coping, emotional coping, acceptance, becoming engaged in leisure activities, and the use of traditional healing to help them cope with their mentally ill members. Suggestions and conclusions: Study suggests that the family caregivers should engage themselves in social support groups to learn about and obtain the positive coping strategies used by other caregivers who have similar experiences in caring for the mentally ill. Study also suggests that they should get appropriate training from the mental health professionals in order to enhance the caregivers' coping skills.
People with a mental illness experience greater chronic disease morbidity and mortality, and associated reduced life expectancy, compared to those without such an illness. A higher prevalence of chronic disease risk behaviours (inadequate nutrition, inadequate physical activity, tobacco smoking, and harmful alcohol consumption) is experienced by this population. Family carers have the potential to support change in such behaviours among those they care for with a mental illness. This study aimed to explore family carers’: 1) experiences in addressing the chronic disease risk behaviours of their family members; 2) existing barriers to addressing such behaviours; and 3) perceptions of potential strategies to assist them to provide risk behaviour change support.
A qualitative study of four focus groups (n = 31), using a semi-structured interview schedule, was conducted with carers of people with a mental illness in New South Wales, Australia from January 2015 to February 2016. An inductive thematic analysis was employed to explore the experience of carers in addressing the chronic disease risk behaviours.
Two main themes were identified in family carers’ report of their experiences: firstly, that health behaviours were salient concerns for carers and that they were engaged in providing support, and secondly that they perceived a bidirectional relationship between health behaviours and mental well-being. Key barriers to addressing behaviours were: a need to attend to carers’ own well-being; defensiveness on behalf of the family member; and not residing with their family member; with other behaviour-specific barriers also identified. Discussion around strategies which would assist carers in providing support for health risk behaviours identified a need for improved communication and collaboration between carers and health services accessed by their family members.
Additional support from general and mental health services accessed by family members is desired to assist carers to address the barriers to providing behaviour change support. Carers have the potential to support and extend health service interventions aimed at improving the chronic disease risk behaviours of people with a mental illness but may require additional information, and collaboration from services. Further research is needed to explore these constructs in a large representative sample
The reality for many families where there is chronic illness, mental health problems, disability, alcohol or substance misuse is that children under the age of 18 are involved in caring. Many of these children - known as 'young carers' - will be providing regular and significant care, either episodically or over many years, often 'hidden' to health, social care and other welfare professionals and services. These children have most often been invisible in social policy and professional practice. What are the reasons why some countries recognize young carers as a priority for social policy while others (most) do not? What are the key factors that influence a country?s awareness and responses to these children? This article provides an original classification and analysis of country-level responses to young carers, drawing on published research, grey literature, policy documents and the authors? extensive engagement in policy and practice networks for young carers and their families in a wide range of countries. The analysis identifies two of the key factors that influence the extent and nature of these policy responses, focusing on the importance of a reliable in-country research base and the contribution of influential national NGOs and their networks.
An integrative review was conducted to evaluate and synthesize the current state of knowledge of family carers’ experiences of emergency psychiatric crises of an adult relative. A literature review was performed by searching key terms in EBSCO (CINAHL, Criminal Justice Abstracts, Social Work Abstracts), and Proquest (MEDLINE, PsycINFO) citation databases; 3,350 citations were retrieved and screened for inclusion. Data synthesis of 25 articles meeting inclusion criteria revealed the following five themes: building to crisis; conflicted emotional experience; police apprehension; invisible experts; and “need to know.” Findings provide essential insight into family carers experiences and needs during crisis that is informative for emergency mental health response practices.
The current study aimed to measure the stress levels of family caregivers of individuals with mental illness and compare their stress levels according to the diagnosis and other sociodemographic characteristics. The sample comprised 310 family caregivers of individuals with mental illness in Jordan. Family caregivers completed a demographic checklist and the Arabic version of the Perceived Stress Scale 10-Item (PSS-10) questionnaire. A significant difference was found in PSS-10 levels among family caregivers according to gender, diagnosis of their family member, and time since diagnosis. Female caregivers reported significantly higher stress levels than male caregivers. Family members of individuals with schizophrenia reported the highest stress levels (p < 0.001). Results also indicated that there was a significant negative correlation between PSS-10 levels of family caregivers and time since diagnosis. Investigating stress levels in family members of individuals with mental illness may be helpful when designing interventions to reduce such stress. [Journal of Psychosocial Nursing and Mental Health Services, 55(6), 30-35.].; Copyright 2017, SLACK Incorporated.
Background: This study aimed to explore the psychological status and quality of life among primary caregivers of individuals suffering from various mental illnesses including early psychosis, chronic schizophrenia, depressive disorders, anxiety disorders and dementia.; Methods: A total of 350 primary caregivers with relatives seeking treatment at a tertiary psychiatric hospital were recruited for this study. Socio-demographic data was obtained and the brief version of the World Health Organisation Quality of Life instrument was used to assess caregiver's quality of life (QOL). Psychological status among primary caregivers was assessed using the General Anxiety Disorder - 7 item (GAD-7) and Patient Health Questionnaire - 9 item (PHQ-9) scales. Family Interview Schedule (FIS) was used to assess the impact of caregiving relating to social problems, interpersonal strain among family members, work related problems and financial difficulties as a result of their relative's illness. The socio-demographic and clinical correlates of QOL, PHQ-9 and GAD-7 were examined using multiple linear and logistic regression analyses. Associations between QOL domains and psychological status was examined using multiple linear regression analyses.; Results: The mean age of the primary caregivers was 49.7 years (SD = 13.2), ranging from 21 to 82 years, with a preponderance of females (67.6%), aged 50-64 years old (45.7%). Majority were of Chinese ethnicity (57.5%), had secondary level education (43.1%), were married (65.2%), and employed (64.9%). 18.3% of primary caregivers had symptoms of depression (based on PHQ-9 cut-off point of 10 or greater) while 12.7% had symptoms of anxiety (based on GAD-7 cut-off point of 10 or greater). Multiple linear and logistic regression analyses revealed that primary caregivers aged between 35-49 years and 50-64 years, unemployed, living with others, providing care to those diagnosed with dementia and who had higher FIS scores were significantly more likely to report symptoms of depression whilst those who cared for their son/daughter were less likely to be associated with symptoms of depression. Primary caregivers who had lower education, were living with others, were single or divorced/separated, were unemployed and with higher FIS scores were associated with lower QOL domain scores. Those with symptoms of depression were significantly associated with low QOL across all four domains, whilst those with symptoms of anxiety were significantly associated with low QOL in the social relationships domain.; Conclusion: Psychological status of caregivers in the current study was associated with the various domains of QOL. In particular, caregivers' symptoms of depression were significantly associated with lower QOL across all four domains of QOL whereas symptoms of anxiety were associated with lower scores in the social relationships domain. The study suggests a need to provide caregivers with social support and psycho-education to improve the QOL as well as aid in developing healthy coping strategies.
Background/Objective: The Devaluation of Consumer Families Scale (DCFS) is commonly used to measure perceived stigma towards family members of people with mental illness. However, its factorial structure has never been confirmed using confirmatory factor analysis (CFA). This study aimed to test the psychometric properties of the DCFS Taiwan version (DCFS-TW). Method: Family caregivers (N=511) completed the DCFS-TW (97 completed the DCFS again after 2 to 4 weeks) and other instruments. CFA, test-retest reliability, internal consistency, concurrent validity, and known-group validity were analyzed. Results: The three-factor structure of the DCFS-TW performed better than the one-factor structure. Test-retest reliability (r = .66) and internal consistency were satisfactory (α = .85); concurrent validity (absolute r = .20 to .58) was acceptable; known-group validity was supported by the significantly different DCFS-TW scores in clinical characteristics (had been vs. had not been hospitalized; had been vs. had not been compulsorily admitted). Conclusions: The DCFS-TW has decent psychometric properties and is suitable for health professionals to measure perceived stigma towards family members of people with mental illness. (English
Background: Although the quality of life (QoL) experienced by patients with schizophrenia has been recognized, few studies have assessed the relationship between the caregivers' QoL and patients' QoL.; Methods: The study included 253 stabilized outpatients with schizophrenia and their caregivers from 3 Mental Health Services in Bolivia (N = 83), Chile (N = 85) and Peru (N = 85). Caregivers' and patients' QoL were respectively assessed using two specific QoL questionnaires (S-CGQoL and S-QoL 18). We collected socio-demographic information and clinical data. Multiple linear regressions were performed to determine which variables were associated with patient's QoL. We tested the following hypothesis using structural equation modeling (SEM): caregivers' QoL may have an indirect effect on patients' QoL mediated by their influence of the severity of psychotic symptoms.; Results: In the multivariate analysis, the caregivers' QoL was not significantly associated with the patients' QoL, except for one QoL dimension about relationship with family (Beta = 0.23). Among patients' characteristics, being a woman and Aymara, having lower educational level, unemployment and severity of symptoms was significantly associated to a lower QoL. The SEM revealed a moderate significant association between caregivers' QoL and psychotic symptoms severity (path coefficient = -0.32) and a significant association between psychotic symptoms severity and patients QoL (path coefficient = -0.40). The indirect effect of caregivers' QoL on patients' QoL was significant (mediated effect coefficient = 0.13).; Conclusion: Improvement of caregiver's QoL may have a direct impact on the psychotic symptoms of patients and indirectly on patient's QoL, confirming the need for ongoing family interventions in these regions.;
Family interventions in chronic psychosis are well established through systematic reviews and meta-analyses. Such reviews report that family intervention might reduce relapse and improve compliance with medication and reduction in levels of expressed emotion (EE). However, most of the previous research has been conducted in caregivers with chronic schizophrenia, and the effects of family interventions in the early stages are largely unknown. Using a quasi-experimental nonequivalent comparison group design, we evaluated the effectiveness of a 7-session group intervention among 59 caregivers of patients with first episode psychosis. Outcome variables measured were carers’ EE and social support. Carers were recruited from inpatient psychiatry units of a tertiary mental health center in South India. Follow-up assessments were carried out after one and three months of intervention. Descriptive and inferential statistics were applied to the data. Carers in the intervention group reported reduction of EE and improvements in social support at a one-month follow-up assessment. However, these benefits were not sustained at the three-month follow-up. Overall, both groups showed significant changes in all outcome variables over the time period.
Psycho education to family members has been emerged as an important prerequisite to modern psychiatric treatment and rehabilitation, since through psycho education many problematic areas related to patient care and compliance with the treatment can be successfully addressed. Being an indispensable adjunct to modern psychiatric treatment it is more efficacious in targeting all areas of patient's illness and functionality quite suitably than any single therapy based approach. Effects of bipolar disorder can be far-reaching, both into the lives of patients and those around them. Severe cognitive, emotional and behavioural dysfunctioning related to illness lead to burden, expressed emotion, life stress, avoidance coping, decreased quality of life and lesser social support in family members of patients because of their inability in understanding the meaning of psychiatric and neurological symptoms. Primary caregiver plays multiple role in care of the ill persons, not only they take day-to-day care of the patient, supervise medications, take the patient to the hospital and look after the financial needs but also they have to bear with the behavioral disturbances in the patient. Experiencing considerable stress and burden they might develop an unhealthy coping style which may adversely affect the caregiving function and their own health. Interventions techniques have proven efficacy in reducing relapse rates and negative impact of symptoms on caregivers and can diminish negative attitudes and increase the willingness in the caregivers in providing care to patients. Through intervention caregivers are imparted knowledge about illness, its course, etiology, warning signs and various ways of managing the patient during distress and dysfunctioning. Psychoeducational training is a way of offering help for caregivers, representing a forum for knowledge sharing, and in which the primary focus is on psychological themes aimed at carers developing coping skills and strategies. It helps caregivers to become skilled in closer monitoring of disease treatment and symptoms which can have major implication in the evolution of the disease over the long term. The goals of these efforts are educational, prevention and to promote psychological health among caregivers as well as the patients.
Family members are often the primary caregiver for autistic adults and this responsibility may impact on the carer's wellbeing and quality of life. 109 family members of autistic adults completed an online survey assessing their wellbeing relating to their caring role for their autistic relative. Family members who were supporting an autistic relative with co-occurring mental health difficulties and who they reported as unprepared for the future, self-reported higher levels of worry, depression, anxiety and stress, and poorer quality of life. These findings emphasise the importance of support for family members of autistic adults, whether through external services to support their relative or individual mental health support for the carer.
Eating disorders (ED) has the highest mortality rate of psychiatric disorders and a high incidence of comorbidity. Because of the average age of onset, care typically befalls family members. However, despite the severity of the disorder and the burden placed on the family, research into the caregiving experience is still developing. Studies have shown caregivers of individuals with ED to experience high levels of distress, burden and expressed emotion. Recent theoretical models have underscored the importance of caregivers' responses as a maintenance factor for the ED, and family therapy has proved efficacious. However, the literature pertaining to the experience of family members living with or caring for an individual with an ED has not been systematically reviewed. This review aimed to synthesize qualitative studies relating to the caring experience and its impact, thereby gaining an understanding from the perspective of the individuals themselves. Relevant search terms were utilized to systematically search key databases. Twenty studies, with a total sample of 239 participants, met the inclusion criteria. Nine core themes emerged from the synthesis, forming the basis of an explanatory theory. The ED was found to have a pervasive impact upon family members, mediated by a number of factors. Cognitive appraisals affected the caregiving experience and responses to the individual. The experience of caregiving was continually reappraised leading to a process of adaptation. The majority of studies identified unmet carer needs. The implications of the findings are discussed with reference to existing theoretical models and in terms of clinical practice. Copyright © 2015 John Wiley & Sons, Ltd. Key Practitioner Messages Carers experience a significant amount of guilt and distress once they have found out about their loved one's eating disorder., Across the studies, there were many themes of unmet need for carers., Siblings have often been overlooked by both clinicians and researchers., Interventions for people with eating disorders should also acknowledge carers and close family members.
The family caregivers of people with mental illness may internalize the public stereotypes into the affiliate stigma (i.e., the self-stigma of family members). This study aimed to compare the affiliate stigma across schizophrenia, bipolar disorder, and major depressive disorder, and to investigate potential factors associated with affiliate stigma. Each caregiver of family members with schizophrenia (n = 215), bipolar disorder (n = 85), and major depressive disorder (n = 159) completed the Affiliate Stigma Scale, Rosenberg Self-Esteem Scale, Caregiver Burden Inventory, Taiwanese Depression Questionnaire, and Beck Anxiety Inventory. After controlling for potential confounders, the hierarchical regression models showed that caregivers of a family member with schizophrenia had a higher level of affiliate stigma than those of bipolar disorder (β = -0.109; p < 0.05) and major depressive disorder (β = -0.230; p < 0.001). Self-esteem, developmental burden, and emotional burden were significant factors for affiliate stigma. The affiliate stigma of caregivers is associated with their self-esteem, caregiver burden, and by the diagnosis.
Background A diagnosis of serious mental illness can impact on the whole family. Families informally provide significant amounts of care but are disproportionately at risk of carer burden when compared to those supporting people with other long-term conditions. Shared decision making (SDM) is an ethical model of health communication associated with positive health outcomes; however, there has been little research to evaluate how routinely family is invited to participate in SDM, or what this looks like in practice. Objective This UK study aimed to better understand how the family caregivers of those diagnosed with SMI are currently involved in decision making, particularly decisions about treatment options including prescribed medication. Objectives were to Explore the extent to which family members wish to be involved in decisions about prescribed medication, Determine how and when professionals engage family in these decisions, Identify barriers and facilitators associated with the engagement of family in decisions about treatment., Participants Open-ended questions were sent to professionals and family members to elicit written responses. Qualitative responses were analysed thematically. Results Themes included the definition of involvement and 'rules of engagement.' Staff members are gatekeepers for family involvement, and the process is not democratic. Family and staff ascribe practical, rather than recovery-oriented roles to family, with pre-occupation around notions of adherence. Conclusions Staff members need support, training and education to apply SDM. Time to exchange information is vital but practically difficult. Negotiated teams, comprising of staff, service users, family, peers as applicable, with ascribed roles and responsibilities could support SDM.
The article reviews the report "National Mental Health Development Unit 2010" highlighting the importance of involving carers particularly in crisis resolution and home treatment teams (CRHT), in managing medicines during a mental health crisis. The authors note the report's recommendation of developing training packages to help carers understand issues and enhance their understanding of mental health conditions and treatment options. They also recommend investigating the needs of young carers.
Objective: To describe measures used to evaluate the burden of caregiving experienced by caregivers of stroke patients and their clinimetric properties. Design: A review of the literature was conducted to examine burden scales with regard to concept, feasibility, internal consistency, validity, reliability and responsiveness. Results: The literature search resulted in 45 measures of caregiver outcomes, including 16 different measures of caregiver burden. About half of the scales were used only once and were not further described. Nearly all instruments measure the various dimensions of burden (competency, negative feelings, social relations, participation problems, physical and mental health and economic aspects), but not in the same proportions. Most measures showed good internal consistency, and validity was demonstrated for all measures except one. However, not much is known about the reliability and responsiveness of these measures. Conclusions: No measure has proven superiority above others. Future research should focus on comparisons between existing instruments and on their reliability and responsiveness.
This article draws on research with children who provide care for parents with serious mental health problems and signals ongoing research that uses photographic participation methods with these groups of vulnerable children. The intention of this article is to highlight the need to move away from popular and simplistic representations of children with caring responsibilities (young carers) as victims of their parents’ illnesses, as ‘little angels’ whose caring work is condoned through rewards or as (exploited) informal domestic workers whose childhoods are inevitably compromised by the caring activity they undertake. Recommendations are made for generating deeper understanding about the lives and needs of children who are affected by parental impairment that is congruent with the thrust of current UK policy, Every Child Matters and the 2004 Children Act.
Family carers of people with mental illness provide an immense contribution to society in caring for mental health consumers. However, carers can experience substantial burdens and poor health outcomes themselves. Recognition of their needs for education and support has led to the development of a range of family education programmes. Throughout Australia, the Mental Illness Fellowship Australia offers the Well Ways programme, a group-based, family-to-family, education programme that provides information and aims to increase carers' capacity to care effectively for themselves, their families, and the mental health consumers. This paper describes a qualitative evaluation of an emotional support service piloted in a Well Ways programme in rural Queensland, Australia. The pilot service comprised individual emotional support offered to family carers attending the weekly Well Ways group education programme. Six of eight family carers who received the emotional support engaged in semistructured interviews exploring their experience of receiving the support. Three themes emerged from their experience: dealing with difficult times, connecting through shared experience, and exploring different options. Family carers found the emotional support beneficial, and reported that it enhanced their capacity to manage their own well-being, as well as their caregiving roles.
This study examines the economic and psychological costs of care for family carers of people with dementia in Ireland. The analysis is based on an opportunistic survey of 98 carers of people with dementia. The article presents new findings on Irish carers' own perceptions of optimal care provision and the value of the care provided in monetary terms. Family carers in the survey provide an average of just under 12 hours of specified care each day to people with dementia. Many carers refer to the constant nature of care, with very high figures recorded for surveillance and supervision of the person with dementia. Irish caregivers spend considerably longer than they would wish caring for their relatives with dementia, allowing their mental health to suffer in the process. Carers would also like to be paid for the work that they do. Current arrangements for monetary compensation are, however, selective and therefore inadequate to meet the needs of most carers.
Purpose. About 30% of the people with multiple sclerosis (MS) require some form of home care assistance and 80% of that assistance is provided by informal or unpaid care givers. This study focusses on the care givers for 530 more disabled people with MS, with the objective of learning more about informal care giving to people with greater dependency and need for assistance.
Method. The data presented in this study were collected in a national survey of 530 people who provided informal care to more disabled people with MS.
Results. Almost half of these care givers reported that they provided more than 20 h of care per week to the person with MS, with more than 9 in 10 shopping for groceries, doing indoor housework, preparing meals or providing transportation for the person with MS. More than 4 in 10 employed care givers reduced the amount of time worked in the previous 12 months because of their care giving responsibilities. Although more than half of the MS care givers in our study reported that care giving was demanding, time consuming or challenging, about 90% of these MS care givers were happy that they could help. About two in three of these MS care givers found that care giving was rewarding, with more than 8 in 10 proud of the care they provided.
Conclusions. More than a quarter of the informal care givers to people with MS thought they would benefit from treatment or counselling provided by mental health professionals. Not only it is necessary to provide access to mental health services for people with MS, but it is also important to assure that their informal care givers also have access to appropriate mental health care, given the scope of their care giving responsibilities.
Carers have an enormous amount of responsibility for the welfare and management of people with a mental illness in Britain, and many require help if they are to continue caring. Mental health nurses may be in a key position to offer support, but they are often unclear of what is required and how it should be delivered. Existing UK nurse-led psychosocial interventions for families often focus on the needs of the patient rather than the carer. This article describes a needs-led support service that has been designed for carers whose relatives are diagnosed with schizophrenia. It recognizes the importance of a collaborative partnership between carers and nurses. In 2000, 10 mental health nurses were trained to deliver this support to carers. An evaluation is currently underway. This article outlines the principles of the training programme and how it might enable nurses to meet the carers' needs.
The author, from the organisation Rethink, gives his personal views on the current state of the mental health services; what users and carers would like their experience of mental health services to be; and the key areas to tackle in order to improve services.
Background: The development of effective medication for the treatment of Alzheimer's disease led to an expansion in the use of memory clinics ther clinic-based services for the delivery and monitoring of the drugs. In contrast, there is an increased emphasis on providing home and community based service delivery for a range of illnesses including dementia.
Methods: This paper reports the findings of an evaluation study comparing a clinic-based and a community service. A convenience sample of 10 service users and carer dyads took part in in-depth qualitative interviews. Service users were diagnosed with mild to moderate dementia of Alzheimer's type. Interviews were recorded, transcribed and subsequently analyzed using template analysis.
Results: Service users and carers were satisfied with both services, with determinants of satisfaction differing between the two services. Issues relating to the location and spatial design of services, comfort, familiarity, communication with staff, and ease of use are highlighted as important determinants of satisfaction amongst service users and their carers.
Conclusion: This study has implications for person-centred care practices in service delivery and for the future design of mental health services for people with dementia.
Background: Recent government policy has highlighted the needs of family and friends who provide support to mental health service users. Carers of assertive outreach (AO) service users may be particularly in need of support. However, little is known about their experiences and how services can support them. Aim: To explore the experiences of carers of individuals receiving an AO service. Method: Ten participants were interviewed using a semi-structured interview schedule. Interviews were transcribed and analysed using interpretative phenomenological analysis. Results: Participants were positive about the service they and their relatives received from AO teams. They described the service as flexible and responsive to their needs and they had developed close collaborative relationships with AO workers. AO workers were considered by carers to be an extension of their family system. AO interventions helped their relatives to regain independence and enabled participants to feel less burdened by their caring role, thereby improving the carer's quality of life. Conclusions: The unique way in which AO teams engage and work alongside service users and their families is greatly valued by carers.
Objectives: Using data from a national sample of informal caregivers to older adults, we identify predictors of lack of choice and the consequences of lack of choice in taking on the caregiving role.
Methods: A national telephone survey with 1397 caregivers was carried out to assess whether respondents had a choice in taking on the caregiving role, their demographic characteristics, the nature and duration of their caregiving experience, and its impact on their physical and psychological well-being. We compare caregivers who felt they had no choice in taking on the caregiving role to those who did.
Results: In total, 44% of caregivers reported a lack of choice in taking on the caregiving role. Highly educated, older caregivers caring for a younger care recipient with emotional or behavioral problems were most likely to report that they had no choice in taking on the caregiving role. Lack of choice is associated with higher levels of emotional stress, physical strain, and negative health impacts, after controlling for multiple confounds including level of care provided, relationship type, primary health condition of the care recipient, and demographic characteristics.
Conclusion: Lack of choice is an independent risk factor for the negative effects of caregiving, and clinicians should be vigilant to lack of choice as a marker of caregiver distress.
In November 2009 important changes to the Direct Payments scheme were introduced. New regulations extend the scheme to people who lack the capacity to consent, and to people with mental health problems who are subject to mental health and certain criminal justice legislation. Guidance for councils on direct payments has been updated to reflect these changes. This leaflet sets out these changes and explains where to find more information.
"Together for mental health" is our ambitious strategy aiming to improve the mental health of the people of Wales and setting out our vision for 21st century mental health services. It is our first mental health strategy to cover all ages and centres on the 6 high level outcomes set out below:
a. The mental health and well-being of the whole population is improved.
b. The impact of mental health problems and/or mental illness on individuals of all ages, their families and carers, communities and the economy more widely, is better recognised and reduced.
c. Inequalities, stigma and discrimination suffered by people experiencing mental health problems and mental illness are reduced.
d. Individuals have a better experience of the support and treatment they receive and have an increased feeling of input and control over related decisions.
e. Access to, and the quality of preventative measures, early intervention and treatment services are improved and more people recover as a result.
f. The values, attitudes and skills of those treating or supporting individuals of all ages with mental health problems or mental illness are improved.
This is the second annual report on the implementation of the Welsh Government mental health strategy.
This bulletin provides a picture of the wellbeing of people who received care and support, and carers who received support in the last 12 months, and where possible, provides a comparison to the rest of the respondents in the survey (those that had not received any care and support services). Due to the small number of respondents receiving help from care and support services, results are published at a Wales level only.
Summarises findings from the 2014-15 National Survey for Wales and responses to questions designed to measure the personal well-being of people who need care and support and carers who need support. Respondents were shown a list of services offered by care and support services in Wales and were asked whether they had received any help from these services in the last 12 months. 9 per cent of all respondents had received care and support for themselves) or had received help to care for or arrange care for another person.
Original document (pdf) on Welsh Government website.
Informal caring is of significant and increasing importance in the context of an ageing population, growing pressures on public finances, and increasing life expectancy at older ages. A growing body of research has examined the characteristics associated with informal care provision, as well as the impact of caring for the carer's physical and mental health, and their economic activity. However, only a relatively small body of literature has focused on the study of ‘repeat’ or continuous caring over time, and the factors associated with such trajectories. In 2001, for the first time, the United Kingdom census asked about provision of informal care, enabling identification of the prevalence of informal caregiving at a national level. This paper follows up informal carers from the 2001 Census in order to examine their characteristics and circumstances 10 years later using a nationally representative 1% sample of linked census data for England and Wales, the Office for National Statistics Longitudinal Study. The analysis classifies the range of possible combinations of caring and non-caring roles between 2001 and 2011, focusing on the characteristics of those who were providing care at one, or both, time points. Among other results, the analysis identified that, among those who were carers in 2001, caring again in, or continuing to care until, 2011 was associated with being female, aged between 45 and 54 years in 2011, looking after the home, and providing care for 50 hours or more per week in 2001. Such results contribute to our understanding of a particular group of informal carers and provide a more nuanced picture of informal care provision at different stages of the life course.
Contributors to this DVD talk from personal experience about the social impacts of living with a mental illness, including stigma and discrimination. Content includes the experiences of two carers and two people who have had experience of mental health problems. In addition, Professor Graham Thornicroft talks about the recent research evidence in nine key areas. Additional clips of other people's experiences also add to the evidence in these nine areas.
Often the needs of carers of people with dual diagnosis are ignored when they too may be doubly isolated and unsupported. Reports on a pilot two-day training workshop for carers in Camden and Islington Mental Health and Social Care NHS Trust, based on training provided for the trust's community and inpatient mental health staff. Discusses what both staff and carers found useful about the workshops.
Little research has examined how, or if, involuntary commitment has impacted on the burden experienced by the family. This paper reports a qualitative study which explored how involuntary commitment under the Mental Health Act (MHA) 2000 in Queensland, Australia impacted on families of people with mental illness. Family members of a person with a mental illness, under involuntary commitment at the time or in the previous 12 months, participated in focus groups. Thematic analysis was used to determine the themes. It was apparent from the views of the family that the use of the involuntary commitment was influenced greatly by the pressures experienced by the mental health services (MHS). The MHA did little to assist the family in gaining access to MHS. It was not until after the family made repeated attempts that they were taken seriously. Often the family had few options other than to use deceit and threats to obtain the necessary treatment required. In view of this, the inherit nature of what involuntary commitment implies for persons under it, such as refusing treatment and management difficulties, indicates the family with such an individual experience more hardship in trying to obtain assistance for that person. Thus, the MHA in Queensland has not met its goals of increasing access to MHS. Family members perceive that they were not being listened to and their concerns were not acted upon. The current culture of the MHS appears to serve, to a large degree, to estrange the family from the consumer making relationships difficult and time-consuming to repair. The mental health profession is urged to consider the culture within their workplace and move towards constructive involvement of the family.
This paper reports on a research study which explored the worries and problems of young carers in Edinburgh. Sixty-one young carers took part in the study, conducted between April and June 2002. Findings indicate that young carers identify significant worries and problems in relation to their well-being, and that these come over and above any 'normal' adolescent difficulties. It is suggested that these findings may have important implications for young carers' mental health, now and in the future, and contain important lessons for child and family social work in general.
Background: In the primary care setting, dementia is often diagnosed relatively late in the disease process. Case finding and proactive collaborative care may have beneficial effects on both patient and informal caregiver by clarifying the cause of cognitive decline and changed behaviour and by enabling support, care planning and access to services. We aim to improve the recognition and diagnosis of individuals with dementia in general practice. In addition to this diagnostic aim, the effects of case finding and subsequent care on the mental health of individuals with dementia and the mental health of their informal carers are explored.
Methods and design: Design: cluster randomised controlled trial with process evaluation.
Participants: 162 individuals ≥ 65 years, in 15 primary care practices, in whom GPs suspect cognitive impairment, but without a dementia diagnosis.
Intervention; case finding and collaborative care: 2 trained practice nurses (PNs) invite all patients with suspected cognitive impairment for a brief functional and cognitive screening. If the cognitive tests are supportive of cognitive impairment, individuals are referred to their GP for further evaluation. If dementia is diagnosed, a comprehensive geriatric assessment takes place to identify other relevant geriatric problems that need to be addressed. Furthermore, the team of GP and PN provide information and support.
Control: GPs provide care and diagnosis as usual.
Main study parameters: after 12 months both groups are compared on: 1) incident dementia (and MCI) diagnoses and 2) patient and caregiver quality of life (QoL-AD; EQ5D) and mental health (MH5; GHQ 12) and caregiver competence to care (SSCQ). The process evaluation concerns facilitating and impeding factors to the implementation of this intervention. These factors are assessed on the care provider level, the care recipient level and on the organisational level.
Discussion: This study will provide insight into the diagnostic yield and the clinical effects of case finding and collaborative care for individuals with suspected cognitive impairment, compared to usual care. A process evaluation will give insight into the feasibility of this intervention. The first results are expected in the course of 2013.
Trial registration: NTR3389
The aim of this report is to provide a scoping review of evaluation studies of interventions and serv ices to support carers of people with m ental health problem s, to discuss issues relating to the effectiveness and cost - effectiveness of interventions, and to provide insights into areas where there are gaps in knowledge. The report is accom panied by a second report, the Consultation Report, that docum ents a consultation exercise held with key stakeholders, including ‘key informant’ carers. A third report, the Overview Report, draws together the em erging them es and issues, and advises on what further researc h and development work should be funded in this area.
Objective: Two small studies have suggested that family carers of people with dementia may be a high-risk group for suicide. The objective of this study was to further explore the rate of suicidal ideation in a large sample of carers and identify psychosocial risk and protective factors.
Method: A cross-sectional survey was conducted with 566 family carers. The survey included measures of suicidality, self-efficacy, physical health, depression, anxiety, hopelessness, optimism, burden, coping strategies, and social support.
Results: Sixteen percent of carers had contemplated suicide more than once in the previous year. There were univariate differences between suicidal and non-suicidal carers on self-efficacy, social support, coping, burden, depression, anxiety, hopelessness, optimism, reasons for living, and symptoms of dementia, as well as age and income management. In a multivariate model, age, depression, and reasons for living predicted suicidal ideation. In tests for mediation, satisfaction with social support and dysfunctional coping had indirect effects on suicidal ideation via depression.
Conclusion: Family carers of people with dementia have high rates of suicidal ideation, with depression a risk factor and increasing age and reasons for living as protective factors. Depression and reasons for living should be targeted in interventions to reduce suicide risk in dementia carers.
Details of service receipt by 132 people diagnosed with dementia and their carers were collected in South London (boroughs of Lewisham, Camberwell, Southwark and Croydon), a geographical area served by several health and social care providers. The data collected included the Caregiver Activity Survey, which details the informal care given. This paper reports the formal and informal services received by the people with dementia at entry to the study. The amount of time spent on specific caring tasks by all informal carers of people with dementia averaged seven hours per week, but was significantly higher for co-resident carers, even when controlling for the level of dependency of the person cared-for. The odds ratios of receipt of formal services are given, according to where people were living: in the community or residential care, with co-resident carers or alone.
Aim. This article reports on trends in health outcomes for family caregivers of hip-fractured patients and the effects of social support on these outcomes.
Background. Little is known about the impact of caregiving on the health outcomes of family caregivers of patients with hip fracture.
Method. For this prospective, correlational study, data were collected from 135 family caregivers of hip-fractured elders (2001–2005). Data on health-related quality of life and social support were collected from family caregivers at 1, 3, 6 and 12 months after discharge of the older hip-fractured patient.
Findings. During the 12 months after the patients’ discharge, family caregivers’ scores improved significantly in role performance-related scales, including bodily pain, social function, role limitations due to emotional problems and role limitations due to physical problems. However, caregivers’ scores for general health and mental health were significantly lower at 12 months [59·91 (sd = 24·54) and 65·91 (sd = 14·36) respectively] than at 1 month after discharge [64·35 (sd = 23·29) and 67·94 (sd = 18·47) respectively]. The trends for most subscale scores for health-related quality of life were positively related to perceived availability of social support.
Conclusions. Caring for a hip-fractured older family member over a sustained period may enhance family caregivers’ role performance, but have a negative impact on their perceived general health and mental health. These results suggest that home care nurses should develop interventions early after discharge to assess and improve family caregivers’ health perception, mental health and social support.
Person centred care means listening to people to find out what is most important to them and without making assumptions. Care is holistic, and centres on the whole person: who they are, their life before, and how they currently feel. The emphasis is on what the person can, rather than cannot do. This video shows health and social care professionals working directly with individuals and their carers. There are no actors, and no prepared scripts. The film shows what a difference a person centred approach makes to individuals with many/complex needs. It links the Single Assessment Process (SAP), as the person centred health and social care framework, with other Department of Health policies e.g. long term conditions with its emphasis on case management. It outlines key principles of person centred care that are evolving, including holistic assessment, personalised care plans, sharing information, continuity and coordination, and self care/self management. A feature of the film is to hear the views of the individuals and carers themselves in 3 Case Studies with a Social Worker, Community Matron and a Community Mental Health Nurse.
The Adults with Incapacity (Scotland) Act 2000 was introduced to protect individuals with incapacity and to support their families and carers in managing and safeguarding the individuals’ welfare and finances. The Executive commissioned a two-year project to monitor how the Act was working. The results were positive, but showed that some changes could be made to streamline procedures and enable more adults and their carers to benefit from the Act. This revised edition of the code of practice for continuing and welfare attorneys takes account of changes to the Act that were introduced in part 2 of the Adult Support and Protection (Scotland) Act 2007. This code is for anyone appointed as an attorney under the Act, that is, as continuing and/or welfare power of attorney. The code applies equally to a lay person and to a professional continuing attorney such as a solicitor or accountant. It contains the following sections: about the act; creating a power of attorney; exercising powers of attorney (continuing and welfare); Specific guidance on exercising welfare powers of attorney;Stopping being an attorney; and Pre-act attorneys and attorneys under the law of another country.
As older workers move closer to retirement, they are more likely to take on caring roles. This may affect their health, retirement plans, and income security. Retired men and women experience the caring role differently, with men less likely to be adversely affected and more likely to accept services and to derive satisfaction from caring. Carers make an important contribution to the lives of the people they care for and to the community. Caring is a productive role that can be sustained into older age, as long as the carer's health and well-being are maintained. More research is needed on the relationship between retirement and caring, to explore the extent of caring and its impact on retirement plans, income, and the physical and mental health of retired carers. This information could then be built into retirement planning to better prepare older workers for this important role. Caring roles and retirement intersect in several ways. About 6 million Americans, 2.6 million Australians, and 6 million people in the United Kingdom are informal carers. People (especially men) are more likely to take on caring roles as they get older and leave the paid workforce. The need to care for a spouse or older relative can be an unanticipated outcome or a precipitator of retirement. Retirement may coincide with illness or disability of a parent or spouse, or may be forced by the demands of caring. Caring may bring about major changes to retirement plans. The financial impact of having been a carer during one's working life may also be felt most keenly on retirement, through the lack of opportunities for savings and retirement fund co-contributions.
This paper will inform mental health service users and carers on how a University in Wales established a service user and carer-led research group. * The group's primary aim will be to undertake its own service user and carer-led research projects. * Mental health service users have undergone empowerment and research training at a University in Wales. This is an important initiative because it is the first service user and carer-led research group in Wales. * This paper is co-authored by a mental health service user and includes transcripts of service users' stories written in their words. Abstract Service user and carer involvement in research has been gaining momentum in recent years. However, this involvement to date has primarily been as research respondents or 'subjects' in research studies. A group of mental health service users at a University in Wales underwent empowerment and research training to enable them to become active participants in the research process; this training was a necessary step to equip mental health service users with the skills to become independent researchers and to carry out service user-led research. We included transcripts from mental health service users on their views of the empowerment and research training received. We are not reporting, in this paper, on the findings from a research study rather it aims to inform readers how a service user and carer-led research group has been established in Wales. The group has two purposes: (1) to train service users in research methodologies, and thus for them to gain essential research skills; and (2) to undertake their own service user and carer-led research projects thereby implementing the research skills they have acquired from the training. The latter is a primary aim of the group; a future paper will report on its development.
The literature on carer burden, needs and interventions developed to address care needs of those caring for people with psychosis are reviewed. The findings of a study which explored the views and experiences of carers, service users and professionals with regard to what carers of people with psychosis need from mental health services are then reported.
Objective: To test the feasibility (for a potential randomised controlled trial) of a computer intervention for improving social interaction and promoting the mental health of rural carers.
Design: The study combined pre- and post-intervention measures with interviews to determine the feasibility of the intervention and the acceptability of the study design to participants. The intervention consisted of providing 14 rural carers with computers and a 4-week training program on basic computer skills, using email and the Internet.
Setting: The study was conducted in a rural community setting.
Participants: The carers were 12 women and two men, aged from 50 to 81 years, with an average of 65.5 years.
Main outcome measures: Measures of social isolation (UCLA Loneliness Scale), depression (Geriatric Depression Scale), carer burden (Zarit Burden Interview) and computer confidence were taken at baseline and at a 3-month follow-up. Interviews were completed at follow-up to discuss outcomes of the study. A focus group discussion was conducted with 11 participants to discuss the study and resolve computer issues.
Results: Most carers reported increased confidence in email and Internet use. There was improvement for most participants in depressive symptoms and social isolation, but little change in carer burden. Participants identified many social benefits associated with the computer intervention, such as intergenerational connection, community building, skills and confidence and preparation for the future.
Conclusion: The intervention was found to be practical and acceptable for a group of older carers. It was concluded that it would be feasible to conduct a large randomised controlled trial of the intervention.
Background: Increased life expectancy has resulted in a greater provision of informal care within the community for patients with chronic physical health conditions. Informal carers are at greater risk of poor mental health, with one in three informal carers of stroke survivors experiencing depression. However, currently no psychological treatments tailored to the unique needs of depressed informal carers of stroke survivors exist. Furthermore, informal carers of stroke survivors experience a number of barriers to attending traditional face-to-face psychological services, such as lack of time and the demands of the caring role. The increased flexibility associated with supported cognitive behavioral therapy self-help (CBTsh), such as the ability for support to be provided by telephone, email, or face-to-face, alongside shorter support sessions, may help overcome such barriers to access. CBTsh, tailored to depressed informal carers of stroke survivors may represent an effective and acceptable solution.
Methods/Design: This study is a Phase II (feasibility) randomized controlled trial (RCT) following guidance in the MRC Complex Interventions Research Methods Framework. We will randomize a sample of depressed informal carers of stroke survivors to receive CBT self-help supported by mental health paraprofessionals, or treatment-as-usual. Consistent with the objectives of assessing the feasibility of trial design and procedures for a potential larger scale trial we will measure the following outcomes: a) feasibility of patient recruitment (recruitment and refusal rates); (b) feasibility and acceptability of data collection procedures; (c) levels of attrition; (d) likely intervention effect size; (e) variability in number, length and frequency of support sessions estimated to bring about recovery; and (f) acceptability of the intervention. Additionally, we will collect data on the diagnosis of depression, symptoms of depression and anxiety, functional impairment, carer burden, quality of life, and stroke survivor mobility skill, self-care and functional ability, measured at four and six months post-randomization.
Discussion: This study will provide important information for the feasibility and design of a Phase III (effectiveness) trial in the future. If the intervention is identified to be feasible, effective, and acceptable, a written CBTsh intervention for informal carers of stroke survivors, supported by mental health paraprofessionals, could represent a cost-effective model of care.
Trial registration: Current Controlled Trials ISRCTN63590486.
The author comments on the limited access to Australian mental health care particularly in rural and remote settings. He cites an article by Alexander and Fraser which reports that poor access to specialists and mental health services in some rural settings prevents patients from being treated by their general practitioners. Due to this, the large burden of care falls to families and informal carers. Recommendations on how to improve access to mental health services are also discussed.
Direct payments are crucial to achieving the Government's aim to increase independence, choice and control for service users and their carers through allowing them the opportunity to arrange their own personalised care. The Health and Social Care Act 2008 extends the availability of direct payments to those people who lack the capacity to consent to their receipt. In addition, the government is also reviewing the current exclusions to receiving direct payments for those people who are subject to various provisions of mental health legislation in light of the modernisation of mental health law brought about by the Mental Health Act 2007. The Government is now consulting on regulations relating to these two changes.
The Oxford Friends and Family Empowerment (OFAFE) service is a carer support service that originated in a collaboration between the Oxfordshire Complex Needs Service and the national mental health charity Rethink. OFAFE provides support and education for adults supporting an individual with a personality disorder. This paper describes the background and operation of the OFAFE service, along with the early stages of the development of a similar service for young carers, the Young Friends and Family Empowerment (YFAFE) service.
This document sets out recommendations for guiding the development of mental health nursing, with the core aim of improving the outcomes and experience of care for service users and carers.
The national outcomes framework for people who need care and support and carers who need support in Wales has been created to deliver on the actions set out in Sustainable Social Services for Wales: A Framework for Action, and the need to fulfil the duties set out in the Social Services and Well-being (Wales) Act. The framework is made up of a well-being statement and the outcome indicators to measure whether well-being is being achieved. The key objectives of the framework are: to describe the important well-being outcomes that people who need care and support and carers who need support should expect in order to lead fulfilled lives, giving people a greater voice and control over their lives and enable them to make informed decisions to ensure they achieve their personal well-being outcomes; to set national direction and promote the well-being of people who need care and their carers; to provide greater transparency on whether care and support services are improving well-being outcomes for people in Wales using consistent and comparable indicators. This will allow the sector to scrutinise its performance and will shine a spotlight on what needs to be done to improve people’s well-being rather than focussing on the processes involved in delivering social services.
This paper presents the finding of an exploratory study examining the risk management strategies of informal carers of mental health service users. Thirteen carers from two cities were interviewed in depth using a semi-structured interview schedule. Participants had been informal carers between four and 20 years and supported users with formal diagnoses of schizophrenia, manic depression and depression. A grounded theory approach was followed to collect and examine data and to test the resulting models of risk management. Three models of risk management are discussed and relate to a wide range of risk posed and faced by the carers' users. The results of this study are compared with those of an earlier study into the risk management strategies of 22 service users with similarities and differences highlighted. 40 refs. [Abstract]
Purpose– National mental health policies in the UK have a common theme of seeking to develop working partnerships between people who use mental health services, their families and carers and professionals. In Somerset, following a staff training programme, a Family Liaison Service has been developed whereby systemically trained staff work alongside inpatient staff to hold family meetings as part of the assessment and admission process on all wards for working age adults and older people. This article aims to focus on this initiative.
Design/methodology/approach – The article considers the development of the Family Liaison Service and evaluates its progress based on audit data, feedback from families using the service, and a survey of staff experience. Issues raised in developing family inclusive services are discussed.
Findings – Evaluation of the service suggests that, although there is still progress to be made, considerable success has been achieved in embedding the service on inpatient units with a substantial increase in meetings held between staff and families. Feedback from families is positive and staff report increased confidence in engaging with families and carers.
Originality/value – This article describes a transferable model for the implementation of national policy to develop working partnerships with families and carers in mainstream mental health services.
Background: Consumer and carer participation in mental health service development and evaluation has widespread nominal support. However, genuine and consistent participation remains elusive due to systemic barriers.
Aims: This paper explores barriers to reform for mental health services from the perspectives of consumers and carers actively engaged in advocating for improvements in the mental health system.
Method: Qualitative research with two mental health systemic advocacy organisations analysed 17 strategic communication documents and nine interviews to examine barriers to reform and participation identified by consumer and carer advocates and staff.
Results: A number of individual-level barriers were described, however advocates gave more focus to systemic barriers, for which five themes emerged. These reflected lack of awareness, limited participation opportunities, slow progress for change, policy issues and mental health culture including stigma.
Conclusions: Findings highlight systemic barriers to participation for consumer and carer advocates as a whole and the influence of these barriers on the individual experiences of those engaged in advocacy and representation work. Participants also emphasised the need for leadership to overcome some of these obstacles and move towards genuine consumer and carer participation and reform. Findings are discussed in the context of power within mental health systems.
BACKGROUND: United Kingdom legislation and clinical standards for schizophrenia challenge nurses to re-examine the support that they provide to carers. Nurses are in a key position to provide this support but may lack the necessary skills to do so. The training programme evaluated in the present study aimed to address this problem.
STUDY AIM: To evaluate change in clinical practice brought about by post-registration training for mental health nurses in supporting carers of people diagnosed with schizophrenia.
DESIGN/METHODS: The study was undertaken in collaboration between the Universities of Dundee and Glasgow, and Tayside National Health Service (NHS) Trust (Scotland). Respondents were nine nurses who completed training and then delivered a planned programme of support to carers. Data on nursing practice were gathered through semi-structured interviews with nurses before training and after providing support. Following the support intervention, carers also commented on the nurses' practice.
FINDINGS: Eight of the nine nurses reported changes in practice in five key areas: They built collaborative relationships with carers, developed a carer focused approach to their practice, acknowledged and supported the carer role, and made progress in identifying carer needs and accessing resources to meet these needs. Nurses experienced difficulties supporting carers who had mental health problems or previous negative experiences of services. Those who lacked community experience also found it difficult to adjust to working in a community setting. Although clinical supervision helped them to work through these difficulties, they remain largely unresolved.
CONCLUSIONS: Findings from this study indicate that appropriate training may enable nurses to improve the support provided to carers of people diagnosed with schizophrenia. This study represents an important stage in determining the nature of support offered to carers by nurses. While developed to help nurses to meet clinical standards set for schizophrenia in the UK, findings may have clinical significance for nurses in other countries.
This study investigates potential explanations of the association between caring and common mental disorder, using the English Adult Psychiatric Morbidity Survey 2007. We examined whether carers are more exposed to other stressors additional to caring – such as domestic violence and debt – and if so whether this explains their elevated rates of mental disorder. We analysed differences between carers and non-carers in common mental disorders (CMD), suicidal thoughts, suicidal attempts, recent stressors, social support, and social participation. We used multivariate models to investigate whether differences between carers and non-carers in identifiable stressors and supports explained the association between caring and CMD, as measured by the revised Clinical Interview Schedule.
The prevalence of CMD (OR = 1.64 95% CI 1.37–1.97), suicidal thoughts in the last week (OR = 2.71 95% CI 1.31–5.62) and fatigue (OR = 1.33 95% CI 1.14–1.54) was increased in carers. However, caring remained independently associated with CMD (OR = 1.58 1.30–1.91) after adjustment for other stressors and social support. Thus caring itself is associated with increased risk of CMD that is not explained by other identified social stressors. Carers should be recognized as being at increased risk of CMD independent of the other life stressors they have to deal with. Interventions aimed at a direct reduction of the stressfulness of caring are indicated. However, carers also reported higher rates of debt problems and domestic violence and perceived social support was slightly lower in carers than in non-carers. So carers are also more likely to experience stressors other than caring and it is likely that they will need support not only aimed at their caring role, but also at other aspects of their lives.
The study examined the effect of direct and indirect stresses on the mental health of offspring caring for an aging parent. The study is based on Pearlin, Lieberman, Menaghan, and Mullan's (1981) Stress Development Model. The research examined 345 subjects, men and women aged 40-59 who filled a questionnaire sent by post within their workplace. The research findings show that the various stresses of the caregiver role are mutually connected and have a significant positive effect on the mental health of caregiving offspring. Another finding shows that the extended family support variable acts as a buffer on the caregiving burden on the adult child.
BACKGROUND: Despite considerable investment in research priority setting within diverse fields of healthcare, little is known about the extent to which different stakeholder groups share research priorities. Conflicting priorities may jeopardize stakeholder engagement in research.
OBJECTIVE: To identify the research priorities of different stakeholder groups within mental health care and examine the extent and nature of agreement between them.
DESIGN: Using a Delphi technique, we conducted parallel consultation processes within four different stakeholder groups. Each group process consisted of three rounds.
SETTING AND PARTICIPANTS: The study was carried out within a mental health and learning disabilities trust in southern England. Participants were recruited from the following groups: mental health service users (34), informal carers (26), mental health practitioners (35) and service managers (23).
FINDINGS: There were striking differences between the four groups in respect of their ability and willingness to make priority decisions. These differences notwithstanding, there was considerable overlap in respect of their research interests. All groups identified and attached high importance to issues relating to the promotion of independence, self-esteem and recovery. The quality of in-patient care, the place of psychological therapies and the relationship between physical and mental health also emerged across the board.
CONCLUSIONS: The confluence of four different stakeholder groups around a number of clear themes is highly encouraging, providing a framework within which to construct a research agenda and suggesting that mental health research can be built on solid partnerships.
OBJECTIVES: Carers of people with eating disorders (ED) have high levels of distress, but little is known about the contributing factors. The aim of this study was to examine predictors of carers' distress and caregiving appraisals using a model of caregiving adapted from the previous literature.
DESIGN: A cross-sectional design was used.
METHODS: A sample of 115 individuals currently caring for someone with an ED participated in the study. Carers completed self-report assessments of psychological distress (GHQ-12; Goldberg & Williams, 1988), experience of caregiving (Szmukler et al., 1996), illness representations (IPQ-SCV; Barrowclough, Lobban, Hatton, & Quinn, 2001) and caregiving needs (CaNAM; Haigh & Treasure, 2003). Simple and multiple hierarchical regressions were conducted.
RESULTS: Approximately 36% (39/109) of carers had scores on the GHQ which indicated mental health difficulties, with 17% (19/109) experiencing high psychological distress. A negative experience of caregiving was associated with carers' distress. The dependency of the individual with the ED and stigma associated with the illness were most highly predictive of carers' distress. Shorter illness duration, higher levels of needs (lower levels of support) and perceptions of high illness consequences contributed to greater negative caregiving appraisals. The belief that the illness was attributable to the sufferers' personality was related to fewer positive appraisals.
CONCLUSIONS: Adjusting to the impact of a family member experiencing an ED is problematic, as suggested by the relationship between shorter illness duration and greater negative appraisals of caregiving. Interventions to help reduce dependency and alleviate stigma may help to decrease carers' distress.
The study aimed to explore the effectiveness of a mental health screening and referral clinical pathway for generalist community nursing care of war veterans and war widow(er)s in Australia on outcomes of client self-reported mental health, quality of life, and client and carer satisfaction. The pathway was developed by literature review and consultation, then trialled and evaluated. Validated screening tools were embedded within the pathway to support generalist nurses' mental health decision making. Pre- and post-measures were applied. Clients on whom the pathway was trialled were invited to complete an evaluation survey questionnaire, as were their informal carers. Most clients and carers who responded to these questionnaires were highly satisfied or satisfied with care provided through application of the pathway. This study adds understanding about one way that community nurses might identify people with mental health difficulties. The trialled pathway, which was modified and refined following the study, is now available on the Internet as an evidence-based resource for community nurses in Australia to guide practice and maximize holistic care for war veterans and war widow(er)s where that care is funded by Department of Veterans' Affairs.
Background: Little is known about the experiences of individuals with intellectual disabilities and additional mental health problems who are admitted for inpatient psychiatric care. In the UK such care is delivered in both generic psychiatric and specialised treatment settings.
Aims: The present study explored service users' and carers' views on in-patient psychiatric treatment received across these two settings.
Method: Thirty service users and wherever possible their main carers were interviewed about their views on the psychiatric admission, treatment and discharge process. Data was gathered during semi-structured, one-to-one interviews.
Results: Both service users and carers identified positive and negative aspects of the psychiatric admission. For service users lack of control and information, support from staff, or conversely its absence emerged as key themes. For carers concerns about service users' vulnerability, negative staff attitudes and opportunities for involvement emerged as key themes. The accounts of both groups regarding generic psychiatric settings were predominantly negative. In contrast, specialized settings were frequently described as providing a pleasant environment, supportive and caring staff, good information sharing and satisfactory discharge arrangements.
Conclusions: Important areas for service improvements are highlighted. Implications in particular for generic settings are considered.
Health is an important factor in the capacity of family and friends (informal carers) to continue providing care for palliative care patients at home. This study investigates associations between the health-related quality of life (HRQOL) of current informal carers and characteristics of the carers and their caregiving situation, in a sample of Australian carers of palliative care patients. The cross-sectional study used the Short Form-36 Health Survey to measure HRQOL. It found carers to have better physical health and worse mental health than the general population. Of 178 carers, 35% reported their health to be worse than it was one year ago. Multiple regression analyses found that the HRQOL of carers whose health had deteriorated in the previous year was associated with the patient's care needs but not the carer's time input, unlike the carers reporting stable health. Clinicians caring for palliative care patients should be alert to the potential health impairments of informal carers and ensure that they are adequately supported in their caregiving role and have access to appropriate treatment and preventive health care.
Statistics on service provision in Scotland to older people, people with learning disabilities, people with mental health problems, disabled people, carers and other users. Provides figures on domiciliary care, day care, residential care, private nursing homes, hospitals and special needs housing for each user group.
Original document (pdf) on the Scottish Government website.
The aim of this document is to help local mental health services develop support services for carers of people with mental health problems. It contains guidance on developing and sustaining mental health carer support services and also includes a sample job description for carer support workers. The guidance should be read in conjunction with Standard Six (Caring for Carers) of the Mental Health National Service Framework (MHNSF) and guidance on implementation of the Carers and Disabled Children Act 2000.
Objectives To analyse the experience of individual family carers of people with dementia who received a manual-based coping strategy programme (STrAtegies for RelaTives, START), demonstrated in a randomised-controlled trial to reduce affective symptoms.
Design A qualitative study using self-completed questionnaires exploring the experience of the START intervention. Two researchers transcribed, coded and analysed completed questionnaires thematically.
Setting Three mental health and one neurology dementia clinic in South East England.
Participants Participants were primary family carers of a patient diagnosed with dementia who provided support at least weekly to their relative. We invited those in the treatment group remaining in the START study at 2 years postrandomisation (n=132) to participate. 75 people, comprising a maximum variation sample, responded.
Primary and secondary outcome measures (1) Important aspects of the therapy. (2) Continued use of the intervention after the end of the therapy. (3) Unhelpful aspects of the therapy and suggestions for improvement. (4) Appropriate time for intervention delivery.
Results Carers identified several different components as important: relaxation techniques, education about dementia, strategies to help manage the behaviour of the person with dementia, contact with the therapist and changing unhelpful thoughts. Two-thirds of the participants reported that they continue to use the intervention's techniques at 2-year follow up. Few participants suggested changes to the intervention content, but some wanted more sessions and others wanted the involvement of more family members. Most were happy with receiving the intervention shortly after diagnosis, although some relatives of people with moderate dementia thought it should have been delivered at an earlier stage.
Conclusions Participants’ varied responses about which aspects of START were helpful suggest that a multicomponent intervention is suited to the differing circumstances of dementia carers, providing a range of potentially helpful strategies. The continued use of the strategies 2 years after receiving the intervention could be a mechanism for the intervention remaining effective.
Background: Many caregivers with chronically ill relatives suffer from depression. However, the relationship of depression to other outcomes of chronic caregiving remains unclear. This study tested a hypothesized model which proposed that hours of care, stressful life events, social support, age and gender would predict caregivers' outcomes through perceived caregiver stress. Depression was expected to mediate the relationship between perceived stress and outcomes of chronic caregiving (physical function, self-esteem, and marital satisfaction).
Methods: The sample for this secondary data analysis consisted of 236 and 271 subjects from the Americans' Changing Lives, Wave 1, 1986, and Wave 2, 1989, data sets. Measures were constructed from the original study. Structural equation modeling was used to test the hypothesized model, and an exploratory structural modeling method, specification search, was used to develop a data-derived model. Cross-validation was used to verify the paths among variables.
Results: Hours of care, age, and gender predicted caregivers' outcomes directly or through perceived caregiver stress (p < .01). Depression mediated the relationship between perceived stress and psychological outcomes and explained 40% and 11% of the variance in self-esteem and marital satisfaction, respectively.
Conclusion: Depression predicted psychological outcomes. Whether depression predicts physical health outcomes needs to be further explored.
Closer relationships between caregivers and care recipients with dementia are associated with positive outcomes for care recipients, but it is unclear if closeness is a risk or protective factor for the health and psychological well-being of caregivers. We examined 234 care dyads from the population-based Cache County Dementia Progression Study. Caregivers included spouses (49%) and adult offspring (51%). Care recipients mostly had dementia of the Alzheimer's type (62%). Linear mixed models tested associations between relationship closeness at baseline or changes in closeness prior to versus after dementia onset, with baseline levels and changes over time in caregiver affect (Affect Balance Scale, ABS), depression (Beck Depression Inventory, BDI), and mental and physical health (components of the Short-Form Health Survey, SF-12). After controlling for demographic characteristics of the caregiver, number of caregiver health conditions, and characteristics of the care recipient (type of dementia, functional ability, and behavioral disturbances), we found that higher baseline closeness predicted higher baseline SF-12 mental health scores (better mental health) and lower depression. Higher baseline closeness also predicted greater worsening over time in ABS and SF-12 mental health. In addition, caregivers who reported a loss of closeness in their relationship with the care recipient from pre- to post-dementia displayed improved scores on ABS and SF-12 mental health, but worse SF-12 physical health over the course of the study. These results suggest that closeness and loss of closeness in the care dyad may be associated with both positive and adverse outcomes for caregivers, both cross-sectionally and over time.
Purpose of the Study: Research shows that parents benefit psychologically from generativity—giving and caring for the next generation—but older adults’ perceptions on giving support to their children are rarely if ever explored in these studies. The current study examines the association between the support that aging parents give to one of their middle-aged offspring, their perception of this support as rewarding or stressful, and their levels of depressive symptoms.
Design and Methods: The sample draws from The Family Exchanges Study and consisted of 337 older parents (mean age: 76) who were drawn from a larger study of middle-aged adults (i.e., target participants). Older parents reported tangible and nontangible forms of support given to the target middle-aged child and the extent to which they viewed providing such support as stressful and/or rewarding.
Results: We found significant interactions between tangible support and feelings of reward and between nontangible support and feelings of stress in explaining parental depressive symptoms. Parents who found giving support to be highly rewarding had lower levels of depressive symptoms when giving high amounts of tangible support. Conversely, parents who view giving support to be highly stressful had higher levels of depressive symptoms when they gave low amounts of nontangible support.
Implications: Findings suggest older parents’ perceptions of supporting their offspring may condition how generativity affects their mental health.
Introduction: Interest in the integration of health and social care services has grown in recent years amongst all Governments in Europe in light of the increasing numbers of older people and those affected by chronic illnesses. This poster offers a review of the “Album of 10 Good Practices of integration at European level” carried out within the Advancing Integration for a Dignified Ageing (AIDA)- Project (www.projectaida.eu/). This was funded by EU Progress Program with the purpose of highlighting common aspects of effectiveness. Methods: The AIDA Project Consortium developed a criteria for selection of good practices on the basis of most relevant conceptual frameworks on integrated health and social care for older people. 28 initiatives were selected by an Advisory Board (AB) composed by five international experts in the field. The provider/ coordinator of each selected initiative (or a lead academic with an interest in the project) has provided an overview of the project, the legal and social context in which it was set, enablers and barriers, and evaluation of impact. The case-studies were then analysed to highlight success factors and impact on users, service providers and overall health and social care systems. Results:description of the case-studies
Background Even at the first episode of psychosis, high expressed emotion (EE) characterises over half of patient–carer relationships. This study compared a carer appraisal model of EE with the ability of illness factors to predict EE at the first episode.
Aims To investigate the utility of a carer appraisal model of EE in first-episode psychosis.
Method We compared high- and low-EE carers of people who had first-episode psychosis (n=46).
Results High EE in carers was associated with higher avoidant coping, higher subjective burden and lower perceived patient interpersonal functioning. Patient illness factors and carers’ distress levels were not associated with EE.
Conclusions Even at the first episode, carers’ psychological appraisal, not patient illness factors, is influential in determining high EE. Carers’ appraisal of their situation should be a primary target to lower or prevent high EE in early intervention for psychosis.
This paper describes the increased national focus on including families and carers in all aspects of mainstream mental health services. It proposes that the specific recommendations included in the National Service Framework for Mental Health be brought together in the form of a strategy to enhance working partnerships with families and carers. It advocates that the implementation of the NSF requires a comprehensive awareness and basic skills training in order that the consideration of families and carers becomes a routine part of mainstream services.
No abstract is available for this article.
Mental healthcare for older people is primarily delivered in the community with informal carers, usually family providing much of this. Older people often require input from a range of services across sectors. In Australia, the different funding and governance structures of these services makes for a complex landscape for older people, their families and mental health workers to navigate. As many people now care into later life, the consequences of not getting the required support include the potential for increased carer burden and reduced capacity to fulfil caring tasks. To help address this, partnerships between carers and service providers are recommended. We were interested in exploring rural carers' experiences of accessing care from a range of services for older people with mental health problems with the view to identify what was currently working, as well as what could be changed to improve service access, coordination of care and positive experience of care.
Background: This study aimed to evaluate outcomes for carers receiving the Admiral Nurse Service, a specialist mental health nursing service for carers of people with dementia. In contrast to many community mental health teams, it works primarily with the caregiver, focuses exclusively on dementia and offers continuing involvement, throughout the caregiving career, including emotional support, provision of information and coordination of practical support.
Method: 104 carers of people with dementia who were interviewed as soon as possible after being referred to a number of Admiral Nurse (AN) services or conventional services in neighbouring areas, and who were re-interviewed eight months later, form the sample (43 AN; 61 comparison).
Results: There were no significant differences between groups, controlling for initial score, on the primary outcome measure at follow-up, the 28-item General Health Questionnaire (GHQ) or its sub-scales, apart from anxiety and insomnia, where outcome was better for the AN group (p = 0.038). Follow-up GHQ scores were associated with ratings of past and current relationship quality. There were no differences in survival in the community between the groups.
Conclusion: Both conventional and AN services are associated with lower distress scores over an eight-month period. Outcome for people with dementia (in terms of institutional placement) is no worse in the AN group, despite the carer focus. Some support is provided for a model of dementia-specialist service which engages with the caregiver and continues involvement for as long as is required, rather than simply carrying out an assessment and referring the person back to social services or primary care. Copyright © 2003 John Wiley & Sons, Ltd.
The new draft Code takes account of the changes to relevant legislation since the previous Code was written. Within the draft Code there is strengthened emphasis on: the involvement of patients and, where appropriate, their families and carers in all aspects of assessment and treatment; understanding the principles of the Mental Capacity Act 2005 and how these should apply to all care and treatment; the involvement of Independent Mental Health Advocates; and the use of appropriate transport for patient subject to the Act to ensure their dignity and safety as far as is practicable. There are two other matters of proposed guidance in the draft Code that are not in the existing code. In relation to the timing of assessments both at the police station and elsewhere, the draft Code proposes: that they should be undertaken within 3 hours and that detention in a police station should not exceed a maximum of 12 hours. Secondly, it proposes that a statutory care and treatment plan, if needed, will be started no longer than 72 hours after admission.
Original document (pdf) on the Welsh Government website.
Objective: To investigate stroke patients’ and carers’ perceptions of the family support organizer (FSO) service in order to highlight its value for potential purchasers and to help shed light on findings from randomized controlled trials.
Design and subjects: Twenty semi-structured interviews were undertaken with a sub sample of stroke patients and their primary informal carers after completion of nine-month outcome assessments as part of a randomized controlled trial.
Setting: Community stroke services in North Nottinghamshire, UK.
Results: Interviewees who received the service reported that the presence of an FSO was valuable in many respects, including helping to claim benefits, as a source of information on stroke, and providing continuity between stroke services. Emotional support was only described by a few. Interviewees who did not receive the service described feelings of isolation and being let down by other stroke services after discharge. They also reported problems accessing information. Help needed to address the practical problems after stroke was commonly reported. For those who did not receive the FSO service, access to support appeared to be found through other channels.
Conclusion: The FSO service appeared to be an information service. In order to evaluate community stroke services, a mixture of qualitative and quantitative outcome measures are necessary.
AIMS AND METHOD To assess whether postal questionnaires, used as a local initiative, were useful in identifying carer depression allowing early support for community-dwelling carers of older adults with mental health needs. The Geriatric Depression Scale and a questionnaire collecting information on the carer’s circumstances were sent to carers of consecutive patients routinely referred to a community mental health team for older adults in south London. Rates of carer depression between postal questionnaire responders and non-responders were compared.
RESULTS The response rate to the postal questionnaires (33%) was similar to that observed in other postal studies; 42% of responders had depression compared with only 4.6% of non-responders.
CLINICAL IMPLICATIONS Pre-contact postal questionnaires may present a simple method of enhancing early detection of carer depression for minimal economic outlay.
This article explores the findings from a recent research project conducted by the Mental Health Foundation for the Alzheimer's Society. The project 'Out of the Shadows' draws out important messages for people with dementia and their carers about their preferences for care and support. The research involved a literature review, focus groups and one-to-one interviews. It investigated who they found out they had dementia, the assessment and diagnostic process, and how they coped after diagnosis.
I describe the development of a group in North London that aimed to increase the involvement of carers in the development and monitoring of mental health services across the borough. I enabled the carers to evaluate their experiences of the group using a participatory action research model. The evaluation was divided into two phases. Phase 1 focused on how the carers developed effective processes to facilitate the individuals in the group to represent not only their experiences but those of the collective. I describe how a critical incident facilitated this discussion and how the carers used the action research cycle to enable this change. Phase 2 enabled the group to reflect on their experiences of the group's impact upon them. The carers identified the following main themes of their experience of the group: shared experience of mental health stigma; empowerment and increased confidence; increased knowledge to enable them to care for themselves and their loved one more effectively, although this was tinged with a sense of frustration. In this process, I reflect on the vision that I had for Carers Against Stigma (CAS) as a user researcher and practitioner working with carers. I discuss the potential conflict that I faced as a practitioner and researcher initiating a carer‐led group. The theoretical implications of the individual service representative representing the views of the collective are discussed, and their needs for access and support to be involved in research and service evaluation are identified.
This report presents the findings of a survey of the mental health of carers living in England. The survey was commissioned by the Department of Health and was carried out between March and July 2001. It is one of a series of surveys of different population groups which began in 1993. The sample for the survey was obtained from people who were identified as carers on the basis of questions included in the 2000 General Household Survey. This report describes the extent to which carers experience mental health problems, such as depression, anxiety and phobias, and identifies a number of factors which are associated with increased levels of such symptoms. It considers a range of factors, such as the socio-demographic characteristics of the carer themselves, their health, the characteristics of those they care for, and the support they receive in their caring role. The report also considers to what extent those carers with mental health problems receive treatment. The report includes a description of the survey methods used and aims to provide an overview of the main topics covered.
Mental health services are required to involve family, carers, and service users in the delivery and development of mental health services but how this can be done in routine practice is challenging. One potential solution is to prescribe practice standards or clear expectation relating to family involvement. This paper describes practice standards introduced to an adult mental health service and a study that aimed to evaluate the impact of the standards on practice. Hospital and community files were audited before and after the introduction of standards for evidence of participation and surveys of carers and consumers relating to the quality of participation were undertaken. Increases in documented carer participation were found, particularly in relation to treatment or care planning. The expressed needs relating to participation varied in hospital and community settings. The majority of carers and service users were satisfied with their level of participation. The introduction of practice standards is an acceptable, inexpensive, and feasible way of improving the quality of family and carer participation, but gains may be modest.
Traditionally, day care for elderly persons has been provided by health or social services; however, recently facilities have been developed by voluntary organizations. This study was conducted to examine the characteristics of elderly clients with mental health problems attending these various settings, and to identify any areas of unmet need. One hundred and twenty-nine clients attending ten different day care facilities and their carers were interviewed in a standardized manner.There were both similarities and important differences between clients attending day hospitals, social services and Age Concern day centres. Day centres had a higher proportion of cognitively impaired clients than day hospitals. Although there were similar rates of depression across all settings, the severity of depression was greater in those attending Age Concern day centres. Patients at day hospitals suffering from dementia were more likely to be psychotic or behaviourally disturbed. The reasons for these differences are discussed in detail. Carers and clients were generally satisfied with services, though professionals were less satisfied. There is a need for joint planning and commissioning of day care to provide maximum flexibility and co-ordination of services.
Objective: The objectives of this study were to: (i) obtain baseline data on the extent of carer involvement across a representative sample of hospital and community patients within an integrated area health service; and (ii) examine perspectives on discharge planning and community care among patients and their carers to identify information and resources they consider important.
Method: Over a 4-month period, inpatients before discharge and patients accessing community mental health services participated in face-to-face interviews. Information was collected about carer involvement and, with the patient's consent, the identified carer was sent a similar survey to determine demographics and information needs. This resulted in a representative sample of patients and carers accessing inpatient and community settings acrossa metropolitan mental health service. Support needs and carerburden were also assessed but are not reported here.
Results: A total of 407 interviews were completed, 207 in inpatient settings and 200 in the community. An inpatient response rate of 70% and a community response rate of 75% was achieved. Across both settings, 67% of patients identified a carer and a carer response rate of 28% was then obtained. We found carers and patients have different priorities regarding the information they want and information is often not provided to carers. Furthermore, patients were more confident in their ability to manage their mental health in the community than carers.
Conclusions: This study yielded important baseline data about the number of patients who have a carer. We were also able to determine that routine clinical information provided to patients and carers is inadequate from their perspective. It is anticipated that this initiative will assist ongoing service planning and improve partnerships with patients and their carers.
This NICE quality standard covers recognition, assessment and management of bipolar disorder in adults (18 years and older) in primary and secondary care. It outlines eight quality statements designed to improve patient safety, patient experience and clinical effectiveness. The eight quality statements are: referral for specialist mental health assessment; personalised care plan; involving carers in care planning; psychological interventions; maintaining plasma lithium levels; valproate; assessing physical health; and supported employment programmes. Each quality statement is accompanied by clear quality measures. The standard aims to improve outcomes in: mortality rate, suicide rate, quality of life for people with severe mental illness, quality of life for carers, employment rates, and service user experience of mental health services.
Carers are seen as legitimate stakeholders in wider policy processes and increasingly as ‘co-producers’ and key providers of care. Mental health carers, however, especially those caring for relatives subject to compulsory care and treatment, often feel overlooked and marginalised, caring in complex circumstances with little or no professional support. The Mental Health (Care & Treatment) (Scotland) Act 2003 (MHCT Act) implemented in 2005 aspired to change this for the better. This article focuses specifically on findings from seven focus groups and 10 individual interviews with 33 carers from three Health Board areas and the State Hospital in Scotland. Interviews were conducted at two stages during 2007 and 2008 as part of a wider study. Participating carers were supporting relatives who were under different compulsory measures and so had experience of new procedures under the MHCT Act. The data were gathered as part of a cohort study exploring service users’, carers’ and professionals’ early experiences of the Act’s implementation. A topic guide was used to explore the impact of compulsion on carers; the ‘Named Person’ role; Mental Health Tribunals; the principles underpinning the MHCT Act; and suggestions for improving the law. The study found that new provisions, in particular the Named Person role and Mental Health Tribunals, had resulted in positive change. However, many carers still felt isolated and unsupported. They remained critical of the lack of consultation and involvement at both individual and collective levels. Few were aware of their right to a carer’s assessment and many were sceptical that this would make any difference. Acknowledging the study’s limitations, we discuss the implications for practice in light of broader policy agendas of personalisation, recovery, recognition for carers and promotion of more community-based mental health services.
As community care has become embedded in the UK as in much of the western world more responsibility for psychosocial care has been placed on family carers. A systematic review of the literature about the role of family carers supporting a relative with severe mental illness and their relationships and engagement with professionals was carried out. The review aimed to find out what professionals expected of family carers and what family carers expected of themselves. Themes were identified: the distinct and personal nature of family caring, potentially effective family caring, barriers to effective caring and ways to overcome barriers. There were expectations that family carers were obligated to help support effective care, but that the rights to enable carers to fulfil these obligations were not consistently upheld. Barriers to upholding rights include: types of service provision, professional attitudes to communication and engagement with carers, and carer ability to cope. Recommendations for practice included: service provision aimed at including carers, more empathic communication by professionals, and a covenant between mental health services and people who depend on them. The idea of a covenant requires more discussion and research is needed into what is expected of family carers.
Helping people to understand what mental illness is and means to people who are affected by it can be difficult, but a set of resources has been developed by a person with bipolar disorder to help address the problem. The 'Choices Method' consists of a series of boards covering a range of mental health conditions which are designed to promote a free exchange of feelings and information between those experiencing mental illness and those supporting them. The method has been independently tested by a UK university and has been found to improve learning and knowledge retention as opposed to other methods. Future projects include the development of a board game for young carers which targets bullying and a board game for people with dementia which charts a day in the life of a person with dementia and those who care for them.
This critique of the term ‘carer’ argues that, although developed as a result of well-intentioned and socially-engaged research, it fails the people with whom it is most concerned, that is ‘carers’ and those who are cared for. The paper considers the historical and political development of the term ‘carer’ before examining research in various ‘carer’-related settings in the United Kingdom, namely mental health, physical and intellectual impairment, cancer and palliative care and older adulthood and dementia. The article concludes that the term ‘carer’ is ineffective and that its continued use should be reconsidered. This conclusion is based on the consistent failure of the term ‘carer’ as a recognisable and valid description of the relationship between ‘carers’ and those for whom they care. Furthermore, use of the term may imply burden and therefore devalue the individual who is cared for and in this way polarises two individuals who would otherwise work together. Consequently, this commentary suggests that descriptions of the caring relationship that focus on the relationship from which it arose would be both more acceptable and useful to those it concerns. Furthermore, a more accessible term may increase uptake of support services currently aimed at ‘carers’, therefore inadvertently meeting the original aims of the term, that is, to increase support for ‘carers’.
This article reports the findings of a literature review of research that has explored the support experiences of family carers of a person with an intellectual disability who displays challenging behaviour and/or has a mental health problem. The purpose of this review is to provide an overview of the reported experiences of family carers from recent research studies, about their own support. Having discussed the search strategy, definitions of challenging behaviour and mental health/illness are presented. Evidence concerning the needs of carers and the extent to which they are met is explored, and the need for consistency and good communication are highlighted. Conclusions are drawn and recommendations made for the development of future research and practice.
This article describes the themes emerging from the author’s anthology of personal accounts of caring for a family member or friend with dementia, ‘Telling tales about dementia’. It explains the importance of family carers and suggests that the knowledge of family carers should be actively sought by professionals delivering services, discussing the barriers of patient confidentiality, examples of important information from family carers being disregarded, and the role of family carers in monitoring care and challenging professionals when necessary. The author asserts that in practice it is rare for family carers to be respected as expert care partners but that when this happens it provides considerable benefits, and concludes that a cultural change is needed in the medical and social care professions to ensure that the contribution of family carers is welcomed and respected.
This chapter explores the provision of care and considers possible future developments and the challenges around provision. We begin with a discussion of human resources, posing the question of whether the UK can satisfy the growing demand for carers, both informal and professional. We specifically examine the different types of carer: the self-carer, informal carers and professionals – social carers, nurses, and doctors, and the implications for health and social care policy and consider the implications for these carer roles in society. We also look at current policy on care in the UK.
As part of an evaluation of service users’ and carers’ experience of involvement in mental health education, training and research, an extended literature review was undertaken. The purpose of this was to review policy underpinning service user and carer involvement in those areas, identify the extent and range of involvement, the processes involved, and the extent to which the effectiveness and impact of involvement had been evaluated. The review found that there was a range of different ways in which people were involved. It identified different types and levels of involvement and different motivations for taking part in involvement activities. Government policy and guidance on public and patient involvement (PPI) in health services has clearly been a driver and has resulted in widespread involvement activity but this has developed on an ad hoc and inconsistent basis.
There are benefits for service users and carers, the NHS, and educational establishments arising out of involvement activity. These include improvements in the health and well-being of service users, enhancing the student experience, and improvements to service delivery. However, there are still barriers to involvement including organisational factors and unintentional discrimination. Payment for involvement activity remains an under researched area. Service users value payments but welfare benefits rules, and inconsistent interpretation of good practice guidance, mean this can be a further barrier to involvement. Currently, the evidence base evaluating the effectiveness of service user involvement in a range of activities including service planning, delivery, education and research is limited.
Background A third of family carers of people with dementia report abusive behaviour towards the person for whom they are caring. This is the first longitudinal study to investigate such behaviour. Aims To test our hypotheses that carers’ reports of abusive behaviour would increase over time, and that change in abuse scores would be predicted by change in anxiety and depression scores. Method In total, 131 (71.6%) of the family/friend dementia carers consecutively recruited from new referrals to Essex and London community mental health teams who were interviewed at baseline, completed the revised Modified Conflict Tactics Scale to measure abuse 1 year later.
Results Sixty-three (48.1%) of the carers reported any abusive behaviour at baseline compared with 81 (61.8%) a year later (χ2 = 6.9, P = 0.009). An increase in abuse scores was predicted by an increase in anxiety and depressive symptoms (respectively β = 0.32, t = 3.9, P<0.001 and β = 0.24, t = 2.9, P = 0.005), and by less domiciliary care at baseline (β = –0.18, t = –2.2, P = 0.031).
Conclusions Most abusive behaviour reported by carers at baseline persisted or worsened in the following year, despite contact with specialist services. We suggest that trials of psychological interventions shown to reduce anxiety and depression in the carers of people with dementia are needed to determine whether they also reduce elder abuse, and can be delivered cost-effectively within the National Health Service (NHS).
Purpose– The purpose of this paper is to examine the value of approaches to mental health based on creative practice in the humanities and arts, and explore these in relation to the potential contribution to mutual recovery.
Design/methodology/approach – The paper is a conceptual analysis and literature review.
Findings– Recovery can embrace carers and practitioners as well as sufferers from mental health problems. Divisions tend to exist between those with mental health needs, informal carers and health, social care and education personnel. Mutual recovery is therefore a very useful term because it instigates a more fully social understanding of mental health recovery processes, encompassing diverse actors in the field of mental health. Research demonstrates the importance of arts for “recovery orientated mental health services”, how they provide ways of breaking down social barriers, of expressing and understanding experiences and emotions, and of helping to rebuild identities and communities. Similarly, the humanities can advance the recovery of health and well‐being.
Originality/value – The notion of mutual recovery through creative practice is more than just a set of creative activities which are believed to have benefit. The idea is also a heuristic that can be useful to professionals and family members, as well as individuals with mental health problems themselves. Mutual recovery is perhaps best seen as a relational construct, offering new opportunities to build egalitarian, appreciative and substantively connected communities – resilient communities of mutual hope, compassion and solidarity.
Concerns raised over number of prosecutions made against care staff or carers for ill-treatment or wilful neglect of people subject to the Mental Health Act or Mental Capacity Act. [Journal abstract]
Purpose of the study: Caring for a spouse diagnosed with Alzheimer’s disease holds potentially severe negative consequences for the physical and psychological well-being of the caregiver. As it is known that the maintenance of a flexible time perspective holds benefits for individual health, the main purpose of this study was to identify and describe the changes in the time perspective of persons caring for a spouse diagnosed with Alzheimer’s disease.
Design and Methods: The SELE instrument was administered in order to shed light on the time perspective of a total of 40 participants. A criterion group design was used, and a mixed methods approach adopted during the collection and analysis of data.
Results: The results of this research project highlighted the existence of a number of important differences regarding the time perspective of caregivers and non-caregivers. The time perspective of caregivers was severely affected by the caregiving situation and the accompanying grieving process. This proved to be one potential avenue through which the caregiving situation has its negative effect on caregivers’ well-being.
Implications: Owing to the usually insufficient funding for the care of demented patients, research regarding the identification of potential cost-effective methods to enhance the resilience of caregivers is of the essence. Maintenance of a balanced time perspective might prove to be to the benefit of caregiver psychological well-being.
A major issue in research, policy and professional practice is the social exclusion of carers, in particular carers for people with mental health problems. In order to address the issue of social exclusion from the perspectives of professionals, 65 participants were interviewed. The sample included directors, managers and senior staff from the social care, health and voluntary sectors. Respondents were asked to comment at length on the social exclusion of carers. Findings highlight four main types of exclusion: first, personal exclusions, including stigma; keeping mental health problems ‘a secret’; and taboos surrounding mental health care; second, social exclusions, such as isolation; narrowing of social networks; restrictions due to time commitments; exclusions relating to education, training, employment and leisure; and young carers; third, service exclusions involving carers being taken for granted and having difficulties with access to appropriate services; and fourth, financial or economic exclusions that lead to carers paying for care. This paper documents patterns of exclusion and draws out implications for research, policy and professional practice. In conclusion this paper also considers the ways in which professionals and services may better promote the social inclusion of carers for people with mental health problems in the future.
Alzheimer's disease (AD) is a one of the leading cause of dependency among older adults and of institutionalization in Europe. The number of people with AD is estimated in 10 million people and the cost of the disease has been recently estimated in 100.000 million of euros per year in the European Union (European Brain Council, 2011). There is nowadays no effective treatment of the disease. Currently, care of AD patients is primary sustained by informal caregivers who suffer burden as a result of their care responsibilities, and consequently are mainly affected by mental health problems (depression, anxiety, etc). This burden is also related with a premature institutionalization and violence against AD patients. In this sense, effective solutions are needed in order to fight against the mental health problems of informal caregivers. Regarding this, a social innovation research, funded by the Progress Programme of the DG of Employment, Social Affairs and Inclusion of the European Commission, is being developed currently in France and Spain, where the authors are aimed to demonstrate how a specialized formal training in AD addressed to people in risk of labour and social exclusion could improve the quality of life of AD patients and reduce the informal caregiver burden. The results of this research is specially relevant to help to reduce mental health problems of the informal carers of AD patients, but also in terms of intervene on the cognitive skills of the persons affected, as well as to allow the employment of socially excluded people.
Objectives: Mental health care for older people is primarily delivered in the community and is largely dependent on informal carers. Mental health policy encourages partnerships between carers and service providers to facilitate service access, coordination and positive experience of care. However, carers often lack information and support from services, with the potential for carer burden, and negative impacts on their own health and capacity to fulfil caring tasks. This paper explores rural carers' experiences of accessing care from a range of services for older people with mental health problems.
Method: The Pathways Interview Schedule was used to facilitate 9 in-depth care journey interviews with 11 carers of older people with a mental health problem. Interviews explored their journeys to and through mental health, aged care, primary care and social care services. Framework analysis was used to explore carers' experiences and perceptions of care with a focus on access enablers and barriers.
Results: Carers had a significant role in navigating services and operationalising care for their relative. Enablers to accessing care included carer knowledge and workers actively involving carers in planning. Barriers included carer mental health literacy, consumer and carer readiness for services, and worker misinterpretation of confidentiality and privacy laws.
Conclusion: Carers should be considered key partners in mental health care planning that crosses service sectors. For this to occur, changes are required at the worker level, including increased communication between mental health workers and carers, and the service level, involving training for staff in interpreting confidentiality and privacy policy.
Background Primary care services are often the main healthcare service for people with dementia; as such, good-quality care at this level is important.
Aim To measure the quality of care provided to people with dementia in general practice using routinely collected data, and to explore associated patient and practice factors.
Design and setting Observational, cross-sectional review of medical records from general practices (n = 52) in five primary care trusts.
Method A total of 994 people with dementia were identified from dementia registers. An unweighted quality-of-care score was constructed using information collected in the annual dementia review, together with pharmacological management of cognitive and non-cognitive symptoms. Multilevel modelling was carried out to identify factors associated with quality-of-care scores.
Results In total, 599 out of 745 (80%) patients with dementia had received an annual dementia review; however, a social care review or discussion with carers was evident in just 305 (51%) and 367 (61%) of those 599 cases, respectively. Despite high prevalence of vascular disease, over a quarter (n = 259, 26%) of all patients with dementia were prescribed antipsychotics; only 57% (n = 148) of these had undergone medication review in the previous 6 months. Those with vascular dementia who were registered with single-handed practices received poorer quality of care than those registered with practices that had more than one GP.
Conclusion Although the number of people with dementia with a record of an annual dementia review is high, the quality of these reviews is suboptimal. The quality score developed in this study could be used as one source of data to identify weaknesses in practice activity that need to be corrected, and so would be of value to commissioners and regulators, as well as practices themselves.
Describes a new strand in this journal in its coverage of research that involves mental health service users and is important to their concerns. Looks at some of the ways in which service user involvement can change research and heralds the dawn of a new era where service users and informal carers are not just the subjects of investigation, but can now have an effect on an influential research forum. (Quotes from original text)
Purpose – This paper describes an ongoing process of engagement with carers of people with intellectual disabilities currently being monitored by an out of area service for both carers of people placed both in area and out of area within a local Mental Health Learning Disabilities team in South London.
Design/methodology/approach – Using a series of consultation events, carers were asked to participate in a free dialogue which focussed on everyday issues for carers. This included financial implications of caring, knowledge of care pathways/systems in care, carer's needs and expectations and the support they currently receive.
Findings – This paper highlighted a number of issues and concerns that carers face in their daily lives when supporting one or more people. These include lack of recognition, financial difficulties, lack of training and support.
Originality/value – This project offered a valuable insight into current carer perceptions and will help develop further discussion and promote greater engagement by services and mutual understanding with this often neglected group.
Objective To assess whether a manual based coping strategy compared with treatment as usual reduces depression and anxiety symptoms in carers of family members with dementia. Design Randomised, parallel group, superiority trial. Setting Three mental health community services and one neurological outpatient dementia service in London and Essex, UK. Participants 260 carers of family members with dementia.
Intervention A manual based coping intervention comprising eight sessions and delivered by supervised psychology graduates to carers of family members with dementia. The programme consisted of psychoeducation about dementia, carers’ stress, and where to get emotional support; understanding behaviours of the family member being cared for, and behavioural management techniques; changing unhelpful thoughts; promoting acceptance; assertive communication; relaxation; planning for the future; increasing pleasant activities; and maintaining skills learnt. Carers practised these techniques at home, using the manual and relaxation CDs.
Main outcome measures Affective symptoms (hospital anxiety and depression total score) at four and eight months. Secondary outcomes were depression and anxiety caseness on the hospital anxiety and depression scale; quality of life of both the carer (health status questionnaire, mental health) and the recipient of care (quality of life-Alzheimer’s disease); and potentially abusive behaviour by the carer towards the recipient of care (modified conflict tactics scale).
Results 260 carers were recruited; 173 were randomised to the intervention and 87 to treatment as usual. Mean total scores on the hospital anxiety and depression scale were lower in the intervention group than in the treatment as usual group over the eight month evaluation period: adjusted difference in means −1.80 points (95% confidence interval −3.29 to −0.31; P=0.02) and absolute difference in means −2.0 points. Carers in the intervention group were less likely to have case level depression (odds ratio 0.24, 95% confidence interval 0.07 to 0.76) and there was a non-significant trend towards reduced case level anxiety (0.30, 0.08 to 1.05). Carers’ quality of life was higher in the intervention group (difference in means 4.09, 95% confidence interval 0.34 to 7.83) but not for the recipient of care (difference in means 0.59, −0.72 to 1.89). Carers in the intervention group reported less abusive behaviour towards the recipient of care compared with those in the treatment as usual group (odds ratio 0.47, 95% confidence interval 0.18 to 1.23), although this was not significant.
Conclusions A manual based coping strategy was effective in reducing affective symptoms and case level depression in carers of family members with dementia. The carers’ quality of life also improved. Trial registration Current Controlled Trials ISCTRN70017938.
The first part of the paper argues that the care relationship is crucial to securing care quality, which has implications for the way in which quality is achieved and measured. However, for more than twenty years, governments have emphasised the part that increasing market competition and, more recently, user choice of services can play in driving up the quality of care. The second part of the paper analyses the development of social care services for older people, from the reform of 1990 to the changes following the general election of 2010. The paper goes on to examine whether competition and choice are in any case enough to result in ‘good care’, given the evidence of limitations both in the amount of choice available and in how far older people are able or willing to choose. It is argued that if ‘good care’ depends disproportionately on the quality of the care relationship, then more attention should be paid to the care workforce, which has received relatively little comment in recent government documents.
The need for accurate information about the mental health problems of multicultural communities requires valid measures of mental health for use in a number of languages and cultural contexts. Measures of psychopathological symptoms leading to a diagnosis have been especially criticised for their universal application, without attention to their limitations across cultures. Yet, measures are crucial to assess recovery and the performance of services, and to take account of carer and user views. The authors summarise the main challenges in the cultural adaptation of such measures in our work with adults and adolescents of South Asian, African and Caribbean origin.
BACKGROUND: Along with classical motor disorders in Parkinson's disease (PD), psychopathological features frequently co-occur, which may increase the caregiver's burden.
AIMS: To identify the profile of psychopathological symptoms in patients with PD and the impact imposed by this condition on the caregiver's burden.
SUBJECTS: Fifty patients with idiopathic PD seen consecutively at the Movement Disorder Outpatient Clinic at the Hospital of State University of Campinas, Brazil, and their 50 respective caregivers were studied.
METHODS: The 50 patients with PD were divided into three groups according to the respective psychiatric diagnosis received (depression: N = 17, dementia: N = 13 and non-depressed and non-demented: N = 20). We divided the caregivers into three groups according to the mental condition of their patients. To assess the mental condition of patients and the caregiver's burden, and to correlate those psychopathological features found with clinical features of PD, we applied the Neuropsychiatric Inventory (NPI).
RESULTS: Patients with dementia presented the highest NPI scores of psychopathological symptoms (26.4), followed by patients with depression (24.9). Non-depressed and non-demented patients revealed fewer symptoms (7.2). Caregivers' burden was found to be proportional to the degree of patients' symptomatology.
CONCLUSION: Patients with dementia presented more severe motor impairment and lower functionality, followed by patients with depression and those non-demented, non-depressed. Psychotic symptoms, agitation, aberrant motor behaviours and sleep disturbances were higher in dementia group. Neuropsychiatric disturbances correlated with caregiver's burden, which was highest in patients with dementia.
The agenda of involving service users and their carers more meaningfully in the development, delivery and evaluation of professional education in health is gaining in importance. The paper reports on a symposium3which presented three diverse initiatives, established within a school of nursing and midwifery in the United Kingdom. These represent different approaches and attempts to engage service users and in some instances carers more fully in professional education aimed at developing mental health practitioners. Each is presented as achieving movement on a continuum of participation from service users as passive recipients to service users as collaborators and co-researchers.
The paper concludes with a discussion of the lessons to be learnt which will hopefully stimulate service user involvement on a wider basis.
This draft framework, which is being issued for consultation, sets out what those planning, delivering and monitoring local primary care and mental health services need to do to improve services for users experiencing mental illness and distress, and their relatives and carers, from Black and minority ethnic communities. There is clear evidence that these users and their relatives and carers experience inequitable services and outcomes. The document focuses on achieving improvements in three generic aspects of delivery (information, appropriate and responsive services and community engagement). These are termed the ‘building blocks’ as they are fundamental to delivering improvements in the outcomes and experiences of Black and minority ethnic users and their carers and relatives. The document then looks in detail at three specialist areas (suicide, pathways to care and acute inpatient care) of particular concern.
This study assessed differences between service users’, family carers’ and mental healthcare providers’ perceptions on service user and family carer involvement in mental healthcare. We conducted questionnaires in care networks for persons with serious and persistent mental illness, among 111 service users, 73 family carers and 216 mental healthcare providers. Many aspects of service user and family carer involvement are achieved to satisfactory levels while other aspects are scarcely realized. Service users and mental healthcare providers perceive family carer involvement as less important and realized than service user involvement. Family carers hold more favorable views on the importance and realization of involvement than do mental healthcare providers. The implementation of stakeholders’ involvement in healthcare is ongoing. Notwithstanding great efforts, service users’ and family carers’ involvement preferences are not yet fully considered. Developing procedures, training and monitoring cycles regarding involvement may enhance this situation.
Sets out the actions required to implement the Welsh Government’s strategy to improve mental well-being of all residents in Wales, during the period 2016-19. It is second of three plans to implement the 10 year strategy. The plan also reflects changes following the Well-being of Future Generations (Wales) Act 2015 and the principles of Prudent Health and Care, providing a greater emphasis on prevention, integration and long term sustainability. The plan covers 11 priority areas. These include: improving quality of life for people, particularly through addressing loneliness and unwanted isolation; that people with mental health problems and their carers are treated with dignity and respect; that all children and young people are more resilient and better able to tackle poor mental well-being when it occurs; there is access to appropriate and timely services; and ensuring that Wales is dementia friendly. The plan is organised in a table providing details of goals, key actions and performance measures.
Original document (pdf) on Welsh Government website.
International and national health policy seeks to increase service user and carer involvement in mental health care planning, but suitable user-centred tools to assess the success of these initiatives are not yet available. The current study describes the development of a new reliable and valid, interval-scaled service-user and carer reported outcome measure for quantifying user/carer involvement in mental health care planning. Psychometric development reduced a 70-item item bank to a short form questionnaire using a combination of Classical Test, Mokken and Rasch Analyses. Test-retest reliability was calculated using t-tests of interval level scores between baseline and 2–4 week follow-up. Items were worded to be relevant to both service users and carers. Nine items were removed following cognitive debriefing with a service user and carer advisory group. An iterative process of item removal reduced the remaining 61 items to a final 14-item scale. The final scale has acceptable scalability (Ho = .69), reliability (alpha = .92), fit to the Rasch model (χ2(70) = 97.25, p = .02), and no differential item functioning or locally dependent items. Scores remained stable over the 4 week follow-up period, indicating good test-retest reliability. The ‘Evaluating the Quality of User and Carer Involvement in Care Planning (EQUIP)’ scale displays excellent psychometric properties and is capable of unidimensional linear measurement. The scale is short, user and carer-centred and will be of direct benefit to clinicians, services, auditors and researchers wishing to quantify levels of user and carer involvement in care planning.
Alan Simpson explains how nurses can learn to support carers of people with mental health problems. 2 refs. [Introduction]
Clinical guideline which provides best practice advice on the care of adults with autism. The guidance covers the following key areas: general principles of care; identification and assessment; and interventions for autism, challenging behaviour, coexisting mental disorders. Assessment and interventions for families, partners and carers and organisation and delivery of care are also covered. Recommendations for future research include the need for more evidence on the clinical and cost effectiveness of: self-help for anxiety and depression, cognitive behavioural therapy for anxiety disorders and pharmacological treatments for depression in adults with autism. The full guideline, 'Autism: the NICE guideline on recognition, referral, diagnosis and management of adults on the autism spectrum' contains details of the methods and evidence used to develop the guideline.
Even for patients receiving complex, intensive medical care for serious and life-threatening illness, family caregiving is typically at the core of what sustains patients at the end of life. The amorphous relationship between physicians and the families of patients at the end of life presents both challenges and opportunities for which physicians may be unprepared. Families play important roles in the practical and emotional aspects of patient care and in decision making at the end of life. At the same time, family members may carry significant burdens as a result of their work. Through the perspectives of the wife, daughter, and home care nurse of a patient who died from pancreatic cancer, we illustrate the range of family caregiver experiences and suggest potentially helpful physician interventions. We describe 5 burdens of family caregiving (time and logistics, physical tasks, financial costs, emotional burdens and mental health risks, and physical health risks) and review the responsibilities of physicians to family caregivers. Based on available evidence, we identify 5 areas of opportunity for physicians to be of service to family members caring for patients at the end of life, including promoting excellent communication with family, encouraging appropriate advance care planning and decision making, supporting home care, demonstrating empathy for family emotions and relationships, and attending to family grief and bereavement. In caring well for family caregivers at the end of life, physicians may not only improve the experiences of patients and family but also find greater sustenance and meaning in their own work.
Background Burden on the relatives of patients with schizophrenia may be influenced not only by patient and caregiver characteristics, but also by differences in mental health service provision.
Aims To analyse whether family burden is affected by national differences in the provision of mental health services.
Method Patients with schizophrenia and their key relatives were examined in Germany (n=333) and Britain (n=170). Differences in family burden in both countries were analysed with regression models controlling for patient and caregiver characteristics.
Results Family burden was associated with patients’symptoms, male gender, unemployment and marital status, as well as caregivers’coping abilities, patient contact and being a patient’s parent. However, even when these attributes were controlled for, British caregivers reported more burden than German caregivers.
Conclusions National differences in family burden may be related to different healthcare systems in Germany and Britain. Support for patients with schizophrenia may be shifted from the professional to the informal healthcare sector more in Britain than in Germany.
For over three years, Mencap (Nl) has provided and largely funded an ‘Information and Advice Service’ aimed primarily at family carers and people with learning disabilities. The service employs four advisers who cover most of Northern Ireland, offering telephone but also face-to-face contact with enquirers. They have access to a specially developed, computerized database that contains details of local as well as national resources. This paper describes the service and the evaluation process used. Information was obtained from four stakeholder groups, namely service-users; service-funders; the leaders of learning disability teams in Health and Social Services (HSS) Trusts and the chairpersons of Mencap local societies. The features of a good information and advice service are noted, along with the developments required to the existing service. In the main these relate to improved partnership working with statutory agencies and increasing the profile of the service with services, family carers and people with learning disabilities. The lessons learnt in Northern Ireland could usefully inform the development of similar services that are proposed for the Irish Republic, Scotland, England and Wales.
Objective The aim of this paper is to report on the findings of a consultation project exploring demand for mental health related complementary therapy services in the local area. The project and findings are reported with reference to historical context and the literature from service user, healthcare policy and complementary therapy fields. Design The consultation was commissioned by a voluntary sector mental health organisation to establish whether a case could be made for the development of a mental health related complementary therapy service, and what form such a service might take. The researchers sought breadth and balance by seeking views from four standpoints: mental health service users, informal carers, health and social care professionals, and complementary therapy providers.
Setting The consultation activities took place in statutory and voluntary sector settings in Liverpool and surrounding areas. The Merseyside region is an area of long term social disadvantage and environmental neglect, currently subject to extensive regeneration activity with significant UK and EU funding.
Method Service user views were captured through a combination of focus groups, in mental health centres, and questionnaires, completed at these events or distributed through mental health groups. Health and social care professionals' views were elicited through group meetings, questionnaires or interviews based on the questionnaire structure. Complementary therapy providers completed questionnaires or were interviewed using the questionnaire structure.
Results The consultations discovered a high level of interest and confidence in holistic forms of therapy amongst service users, carers and professionals, together with interest and expertise in helping with mental health related problems amongst the therapists.
Conclusion This main contribution to knowledge is in the wealth of detail about potential therapeutic applications and suggested organisational principles for complementary therapy services in the mental health field. The findings are inconclusive on the macro question of service design.
This learning object focuses primarily on the later stages of dementia and on managing the more significant or prominent challenges - and symptoms - associated with this level of dementia. The material aims to reflect, where possible, the experiences of people with dementia and their family carers. Many of the examples given are located in a care home setting although the issues are also very relevant to supporting a person with dementia in the community.
Reciprocal benefits may exist in relationships between carers and their adult sons/daughters with intellectual disabilities, but the topic has not been widely studied. The present study investigated whether older carers of adult children with intellectual disabilities perceive emotional and tangible reciprocity in their relationships and the association between perceived reciprocity with quality of life. The authors surveyed 91 parental carers (aged 50+ years, mean = 60.8). Bivariate correlations and hierarchical regression analyses assessed the relationship between tangible and emotional reciprocity and carer quality of life variables (physical and mental health, depressive symptomatology, life satisfaction) and carers' desire for an alternative residential situation of their son/daughter. Overall, more tangible and emotional support was given than received from their adult children. However, despite varying levels of intellectual disability and functional impairments of their care recipient, carers did report receiving considerable support. Relative disadvantage (i.e., giving more than received) in tangible reciprocity was associated with increased depressive symptomatology and poorer mental health but also reduced desire for seeking an alternative residential situation for the person for whom they are caring. These relationships were attenuated after covariance analyses. Emotional reciprocity was not associated with any of the outcome measures. The results suggest that perceptions of reciprocity are relevant in caregiving for intellectual disability and may be an underappreciated asset in coping with caregiving.
The article discusses issues being debated in Great Britain's House of Commons in July 2010. Health Minister Paul Burstow observes that young carers of parents or siblings needed an integrated support programme from schools, social services and community groups. Education Minister Michael Gove stated that the number of teachers under the Teach First Programme will be doubled to 1,140 a year. Chris Leslie of Lab/Co-op, Nottingham East, asked that funding for mental health services for deprived children in Nottingham be maintained.
Background: Heart failure is a complex cardiac syndrome prevalent in an older population. Caring for heart failure patients through the disease trajectory presents physical and emotional challenges for informal carers. Carers have to deal with clinically unstable patients, the responsibility of managing and titrating medication according to symptoms and frequent admissions to acute care. These challenges compound the demands on caregivers’ physical and psychosocial well-being. Alongside the negative impact of being a carer, positive aspects have also been demonstrated; carers describe feelings of shared responsibility of caring with professional carers and the reward of supporting a loved one, which creates a new role in their relationship.
Aim: This review explores the dimensions that impact caregiver burden and quality of life in carers of patients with heart failure and highlights both the negative and positive aspects of being an informal carer for heart failure patients.
Design: This review followed the processes recommended for a narrative review. Studies identified were selected systematically following the PRISMA guidelines.
Data sources: Searches were conducted using the Medical Subject Headings (MeSH) and keywords of the following search engines: MEDLINE, Cumulative Index to Nursing and Allied Health Literature (CINAHL), Embase, Applied Social Sciences Index and Abstracts (ASSIA), PsycINFO and Cochrane for literature published until January 2012.
Results: Quality assessment of the studies was conducted using quality indicators, and the studies included in this review were categorised as fair or good according to the criteria. Of the 1008 studies initially identified, 16 studies met the inclusion criteria. A thematic synthesis was undertaken, and the following themes were identified
Perceived carer control;
Mental and emotional well-being;
Types and impact of caregiving tasks;
Impact of patients’ physical condition;
Impact of age/gender/demographic factors;
Positive aspects of caregiving.
Conclusions: This review highlights evidence that informal carers supporting patients with heart failure face many challenges impacting their physical and mental well-being. The studies described provide an insight into the individual dimensions that make a carer particularly vulnerable, namely, younger carers, female carers and carers with existing physical and emotional health issues. Additionally, there are external influences that increase risk of burden, including New York Heart Association Score status of the patient, if the patient has had recurrent emergency admissions or has recently been discharged home and the level of social support available to the carer. A further finding from conducting this review is that there are still limited measures of the positive aspects of caregiving.
This consultation paper considers how the law should regulate deprivations of liberty involving people who lack capacity to consent to their care and treatment arrangements. Article 5 of the European Convention on Human Rights guarantees the right to personal liberty and provides that no-one should be deprived of their liberty in an arbitrary fashion.
The 2011 census suggested that 244,000 young people in England and Wales under 19 provide unpaid care for someone with an illness or disability (Office for National Statistics, 2013). Young carers are not a homogeneous population; they represent children and young people from a variety of backgrounds with diverse experiences. Young carers are described as a 'hidden population' (H.M Government, 2010) hence the prevalence of young carers may be larger than data sources reveal. Previous research has identified negative aspects of caregiving and the impact on education, social, emotional, physical health and wellbeing. Young carers seem to be a vulnerable group and marginalised population, yet there is little reference to young carers in educational psychology literature. This research sought to listen to the voices of this hidden population from a strengths-based perspective to consider if this adds to our understanding of their resilience. The research adopted an inductive constructionist approach using Interpretative Phenomenological Analysis (IPA). Six participants aged between 11 and 13 years were recruited from a large rural Young Carers Project to attend three separate interviews. Participants were caring for a parent with a mental illness. Findings illustrated these young carers had very individual and complex lives, full of tensions, yet they found ways of managing and adapting to their situations. Implications for raising the profile of individuals with complex lives are discussed and consideration given to a sensitive, individualised and flexible response.
OBJECTIVES: The purpose of this study was to apply Weiner's (1986) attributional model of helping to the care of clients presenting with challenging behaviour. A number of predictions were tested: (a) that aggressive, destructive, and self-injurious behaviours would differentially affect carers' ratings of attributional dimensions; (b) that carers' propensity to help would be mediated by positive affect rather than optimism; (c) that optimism would be reduced by a perceived stable cause, such as client's level of dependency.
DESIGN AND METHOD: The participants were 50 care staff working in challenging behaviour day services, who were presented with six case studies to rate. A two-factor repeated measures design was employed to examine the effects of challenging behaviour and dependency on carers' ratings of attributional dimensions, affects, optimism and helping. Correlational analysis was employed to examine the relative effects of positive affect, negative affect and optimism on carers' propensity to help.
RESULTS: All three predictions were confirmed. The more independent and outer directed the challenging behaviour, the greater the carers' attributions of control and negative affect, and the less the propensity to help. The more self-directed and dependent the client's challenging behaviour, the greater the carers' attribution of stability, positive affect and propensity to help.
CONCLUSIONS: The results are discussed in relation to the concept of helping and the experience of carers coping with challenging behaviours.
This report presents findings from research into the experiences of using personal budgets for older people, people with mental health problems and their carers, with suggestions for good practice and future improvement.
Background: Multiple sclerosis (MS) patients have high rates of complications and disability, including cognitive impairment, that often, impact on caregivers' emotional health. Clarification may help identify improved supportive strategies for both caregivers and patients.
Objective: We aimed to analyse whether MS domain-specific cognitive impairment can influence the severity of psychiatric symptoms of MS caregivers.
Methods: Patients with definite MS (n = 63) and their corresponding caregivers (n = 63) were recruited. In addition, 59 matched controls were enrolled for establishing normative cognitive data. Each patient underwent a complete neuropsychological testing for cognitive impairment and thorough clinical assessment, including data of disability status (EDSS), affective and emotional symptoms (depression, anxiety, anger) and fatigue. Psychiatric symptoms of the caregivers were assessed with the Beck Anxiety Inventory (BAI) and the Beck Depression Inventory (BDI).
Results: In logistic regression analyses, even after controlling for other MS-related symptoms, cognitive deficits, namely impairment on Symbol Digit Modalities Test (OR = 8.03, 95% CI = 1.27–25.33, p = 0.027) and on the Paced Auditory Serial Addition Test (OR = 6.86, 95% CI = 1.07–21.97, p = 0.042), were significant and independent predictors of more severe caregivers' depressive symptoms.
Conclusions: Information processing speed impairment is independently associated with more severe depressive symptoms of caregivers of MS patients, thereby reflecting a further deterioration of family setting.
This code of practice provides guidance to mental health professionals and other practitioners on how they should carry out their duties under the Mental Health Act. As well as providing guidance for professionals, the revised code of practice also guides patients, their families and carers on their rights. Chapters are grouped into seven areas: Using the Act; Protecting patient's rights and autonomy; Assessment, transport and admission to hospital; Additional considerations for the needs of specific patients; Care, support and treatment in hospital; Leaving hospital; and additional information for professional with specific responsibilities under the Act. Subjects covered in individual chapters include: the nearest relative; independent mental health advocates; mental capacity and deprivation of liberty; detention in hospital; police community treatment orders; guardianship; after care; and care programme approach. The code of practice will come into force on 1 April 2015, depending on Parliamentary approval.
Informal carers play a key role in mental health care. This article draws on the work of Goffman to analyse the experiences of carers in Ghana. The findings illustrate the complex nature of caring and the need to develop social work practice that acknowledges the social context of carers' reality.
Report of evaluation of the Scottish Recovery Indicator (SRI) pilot in five health board areas of Scotland. SRI is a practice development tool for assessing whether mental health services are meeting service-users' needs for equality, social inclusion and recovery.
Original document from the Scottish Government website.
This study explored the association between perceptions of health care quality and quality of life in patients with advanced metastatic cancer and their informal caregivers (n=39). Patients' and caregivers' perceptions of health care quality, mental health, health-related quality of life, symptoms, and burden were measured. The key findings included the following: 1) patients' mental health and depression scores correlated with those of caregivers, suggesting that the mental health of patients and their caregivers are associated; 2) patients and caregivers shared similar perceptions regarding health care quality; 3) the presence of depression in caregivers correlated with caregivers being less satisfied with the health care being given to their patients (this correlation did not exist for patients, a finding that may be due in part to the protective buffering effect that caregivers provide their patients as illness progresses); and 4) a modified Primary Care Assessment Survey, originally designed for primary care patients, was a useful measure of health care assessment for both patients and caregivers. These data suggest that patients with advanced disease and their caregivers share similar perceptions and evolve as a “unit of care,” and caregivers, as unique and important members of the patient's health care team, are also in need of care. When depressed, caregivers may unilaterally lose trust by becoming less satisfied with the quality of health care being provided to their patients.
As more people with a serious mental illness such as schizophrenia live in the community, often with their own families, carers need increasing support. Reports on a small research study which found a link between carers' knowledge of the condition and their ability to manage problems, and between their sense of satisfaction with services and their communications with the mental health team.
Purpose– The purpose of this paper is to provide a brief overview of the literature to date which has focused on co-production within mental healthcare in the UK, including service user and carer involvement and collaboration.
Design/methodology/approach – The paper presents key outcomes from studies which have explicitly attempted to introduce co-produced care in addition to specific tools designed to encourage co-production within mental health services. The paper debates the cultural and ideological shift required for staff, service users and family members to undertake co-produced care and outlines challenges ahead with respect to service redesign and new roles in practice.
Findings – Informal carers (family and friends) are recognised as a fundamental resource for mental health service provision, as well as a rich source of expertise through experience, yet their views are rarely solicited by mental health professionals or taken into account during decision making. This issue is considered alongside new policy recommendations which advocate the development of co-produced services and care.
Research limitations/implications – Despite the launch of a number of initiatives designed to build on peer experience and support, there has been a lack of attention on the differing dynamic which remains evident between healthcare professionals and people using mental health services. Co-production sheds a light on the blurring of roles, trust and shared endeavour (Slay and Stephens, 2013) but, despite an increase in peer recovery workers across England, there has been little research or service development designed to focus explicitly on this particular dynamic.
Practical implications – Despite these challenges, coproduction in mental healthcare represents a real opportunity for the skills and experience of family members to be taken into account and could provide a mechanism to achieve the “triangle of care” with input, recognition and respect given to all (service users, carers, professionals) whose lives are touched by mental distress. However, lack of attention in relation to carer perspectives, expertise and potential involvement could undermine the potential for coproduction to act as a vehicle to encourage person-centred care which accounts for social in addition to clinical factors.
Social implications – The families of people with severe and enduring mental illness assume a major responsibility for the provision of care and support to their relatives over extended time periods (Rose et al., 2004). Involving carers in discussions about care planning could help to provide a wider picture about the impact of mental health difficulties, beyond symptom reduction. The “co-production of care” reflects a desire to work meaningfully and fully with service users and carers. However, to date, little work has been undertaken in order to coproduce services through the “triangle of care” with carers bringing their own skills, resources and expertise.
Originality/value – This paper debates the current involvement of carers across mental healthcare and debates whether co-production could be a vehicle to utilise carer expertise, enhance quality and satisfaction with mental healthcare. The critique of current work highlights the danger of increasing expectations on service providers to undertake work aligned to key initiatives (shared decision-making, person-centred care, co-production), that have common underpinning principles but, in the absence of practical guidance, could be addressed in isolation rather than as an integrated approach within a “triangle of care”.
BACKGROUND: Patients with Pompe disease, a rare progressive neuromuscular disorder, receive a considerable amount of informal care. In this study, we examined the impact of providing informal care to patients with Pompe disease.
METHODS: Caregivers were administered various instruments, which measured the (impact of) informal care in the context of Pompe disease. Patients' quality of life and use of a wheelchair and respiratory support were used to investigate the impact of disease severity on the burden and well-being of caregivers.
RESULTS: Of all Dutch patients with Pompe disease, 88 indicated to receive informal care, of which 67 (76%; 67 caregivers) participated in this study. On average, caregivers provided 17.7 hours of informal care per week. Higher disease burden was associated with more hours of informal care. Caregivers experienced burden due to caregiving. Half of the informal caregivers reported mental health problems and problems with daily activities due to providing informal care. Physical health problems occurred in 40% of informal caregivers. Caregiver burden was higher for patients with a lower quality of life and for wheelchair dependent patients. Burden was not associated with respiratory support. Caregivers reported deriving personal fulfillment from caregiving and, on average, would become unhappier if someone else were to take over their care activities.
CONCLUSIONS: The provision of informal care causes burden to caregivers. However, caregivers also value caring for their loved ones themselves. The study may help physicians and policy makers to design measures to support informal caregivers.
The article informs that the community health mental health team where the author worked as a community psychiatric nurse (CPN) a few years ago had a referral from a GP for a woman in her thirties with anxiety and depression. When he went to assess this patient, he discovered that she was the daughter of a previous patient of mine--her mother having had chronic schizophrenia. Nina, the new patient, had been offered a wide range of treatments in the past but had never spoken about growing up with a mother who had schizophrenia. This area offers exciting opportunities for mental health workers. Services must ensure there are more early interventions with young carers, and less need for belated interventions with grown-up survivors of caring who may have developed adult mental health problems as a result. INSET: The Meriden Family Interventions Programme.
A study was undertaken to investigate the views of professional staff and paid and informal carers' views of a new integrated mental health service for people with learning disabilities.
Twenty semi-structured interviews were conducted and transcribed. Most staff and carers were generally satisfied with the in-patient facility. However, information exchange, ward rounds and the ward environment were identified as areas requiring improvement.
Many of the participants had no previous experience of supporting a person with learning disabilities and mental health problems in an in-patient setting. However, over time they became supportive of the mental health service and provided valuable input in improving the service provision for people with learning disabilities.
In this second of two articles on community mental health nursing in dementia care, John Keady and Trevor Adams review published accounts of the CMHN role in work with people with dementia and their carers, and suggest a way in which the role might develop in future.
The National Service Framework for Mental Health was published in 1999. It laid out a much welcomed list of standards of what health services were to be provided – in terms of mental health promotion, services in primary and secondary care, services for carers and for suicide prevention. It gave an expectation that all of these would be met within a ten year timeframe. Five years on, it is time to reflect on how far mental health services have risen to the challenge. The picture is mixed. While there is no doubt that increased focus has been placed on specialised community based services, which is welcome, this has in many cases been at the expense of attention on other areas such as mental health promotion and inpatient care.
Objective: In this follow-up study, the long-term influence of group living homes (GLHs) on informal caregiver distress was compared with modern yet regular nursing homes (NHs).
Method: Informal caregivers of GLH (N = 37) and NH residents (N = 49) were studied at the time of admission, 6 months thereafter, and approximately 24 months after admission. Repeated measures of ANOVA were performed to study group-by-time effects on psychopathology, role overload, and feelings of competence.
Result: All outcomes of psychological distress in GLH caregivers showed significantly greater decline compared with NH caregivers during the first six months after admission. The course of psychological distress stabilized in both caregiver groups after six months.
Conclusion: GLHs may have played a role in reducing caregiver burden during the first six months after the nursing home admission of the care recipient. The stabilization of caregivers’ psychological distress between T1 and T2 may indicate that there is no further room for improvement in the GLH and NH groups after six months. The implication would be that both GLHs and NHs succeeded in keeping caregivers’ distress relatively low over the long term. More knowledge is needed on whether and how caregivers’ psychological distress after institutionalization of the care recipient can be reduced to a greater extent.
Objective: Compare the impact of two interventions, a web-based support and a folder support, for young persons who care for people who suffer from mental illness.
Methods: This study was a randomized control trial, following the CONSORT statements, which compared the impact of two interventions. Primary outcome variable was stress, and secondary outcome variables were caring situation, general self-efficacy, well-being, health, and quality of life of young informal carers (N = 241). Data were collected in June 2010 to April 2011, with self-assessment questionnaires, comparing the two interventions and also to detect changes.
Results: The stress levels were high in both groups at baseline, but decreased in the folder group. The folder group had improvement in their caring situation (also different from the web group), general self-efficacy, well-being, and quality of life. The web group showed increase in well-being.
Conclusion: Young informal carers who take on the responsibility for people close to them; suffer consequences on their own health. They live in a life-situation characterized by high stress and low well-being. This signals a need for support.
Practice implications: The non-significant differences show that each intervention can be effective, and that it depends upon the individual's preferences. This highlights the importance of adopting person-centered approach, in which young persons can themselves choose support strategy.
How do carer support programmes meet the needs of those caring for dependent mentally ill older people? Julie Hall reviews the evidence.
Up to one and a half million people in Britain are involved in caring for a relative or friend with mental illness or dementia. Recent government policy has emphasised the needs of this particular group of carers, but effective support can be implemented only if managers and practitioners know what works.
Looks at the findings from a review of mental health carer support and the effectiveness of the services on offer. The review was carried out by the Social Policy Research Unit (SPRU) at the University of York.
Capital is a user‐led training, consultancy and research organisation based in West Sussex. When the local mental health trust decided to evaluate its assertive outreach team, Capital bid to conduct a qualitative review through one‐to‐one interviews with the team's clients and their carers. In this candid article the project team members describe the process, the hurdles and obstacles they encountered, how they were negotiated or overcome, and what they learned from the experience.
This article seeks to examine the factors affecting the caregiver's appraisal of caring for a mentally ill relative. Two hundred and ten caregivers attending to a family member with chronic mental illness in India were interviewed for the study. the results of path analysis indicate burden experienced in the context of caregiving, patient's illness characteristics, and kinship support to be the most significant factors contributing to the caregiver's appraisal of the caregiving experience. The implications of the findings are summarised.
Background: Individual assessment of needs has been recognised as the most appropriate way to allocate health and social care resources. These assessments, however, are often made by the staff or by a carer who acts as an advocate for the user themselves. Little is known about how these proxy measures compare to how individual patients perceive their own needs.
Aim: The aim of this study was to measure and compare ratings of need for older people with mental health problems by the older person themselves, their carer, and an appropriate staff member.
Method: One-hundred and one older people were identified from various mental health services and 87 users, 57 carers, and 95 staff were interviewed using the Camberwell Assessment of Need for the Elderly (CANE) to identify met and unmet needs.
Results: Users identified significantly fewer of their needs (5.5) than either staff (8.1) or carers (8.3) did, but this difference was accounted for by people with dementia reporting less needs. Users identified fewer psychological or social needs (e.g. daytime activities, company, or carer distress) than staff or carers did. The average Kappa indicating level of agreement between staff and user was 0.52, between user and carer was 0.53, and between carer and user was 0.58. This showed only a fair level of reliability between different ratings of need.
Conclusions: User perspectives should be given a high priority when assessing individual needs. Fears that assessment of need would be unduly time-consuming or would simply reflect individual demands should be allayed. A user-based assessment will assist healthcare providers to prioritise needs according to what the user themselves consider to be most important, beneficial, and acceptable to them. Reliance solely on assessment by staff or carers may not lead to the most equitable or appropriate use of services. Copyright © 2003 John Wiley & Sons, Ltd.
This study examined support, stress, and well-being between adults who provide care for an aging and disabled parent and those who care for an aging and disabled parent-in-law. The study utilized a sample of individuals caring for a parent (n = 77), individuals caring for an in-law (n = 26) and a comparison group of noncaregivers (n = 1,939) from the Midlife Development in the United States study. In-law caregivers provided more financial assistance but adult child caregivers provided more emotional support and unpaid work. Adult child caregivers reported poorer mental health and family strain; in-law caregivers reported more spouse support and less family strain.
The objective of this pilot Norwegian intervention study was to explore whether use of information and communication technology (ICT) by informal carers of frail elderly people living at home would enable them to gain more knowledge about chronic illness, caring and coping, establish an informal support network and reduce stress and related mental health problems. Potential participants were close relatives of an elderly person with a diagnosis of a chronic illness dwelling in the same household who wished to continue caring for their relative at home, were 60 years of age or older, had been caring for less than 2 years, were a computer novice and had Norwegian as their first language. Nineteen elderly spousal carers participated in the study from two municipalities in eastern Norway. The project commenced in January 2004 and consisted of a multimethod evaluation model. Outcomes measured included carers’ social contacts (measured by the Family and Friendship Contacts scale); burden of care (measured by the Relative Stress scale); and knowledge about chronic disease and caring, stress and mental health and use of ICT (examined via a composite carer questionnaire). These quantitative data were collected immediately prior to the study and at 12 months. Qualitative data were also collected via focus group interviews with participant carers at 7 months. At follow-up, quantitative measures did not reveal any reduction in carer stress or mental health problems. However, carers reported extensive use of the ICT service, more social contacts and increased support and less need for information about chronic illness and caring. Contact with and support from other carers with similar experiences was particularly valued by participants. The intervention also enhanced contacts with family and friends outside the carer network. Thus, it can be seen that ICT has the potential to contribute to health promotion among elderly spousal carers.
AIMS AND METHOD: We aimed to introduce mental health service users, carers and workers to working as research partners with an academic unit, and provide training to facilitate participation. We achieved this by running workshops covering different stages of the research process.
RESULTS: Service users, carers and workers attended the workshops, although carers were underrepresented. Feedback was generally positive, and some participants have since become involved as researchers with projects at the Academic Unit.
DISCUSSION: Detailed planning was crucial for deciding the course content, recruiting participants, responding to participant feedback and ensuring future research opportunities were available.
The involvement of service users and carers in health services research is increasingly expected (Department of Health, 2001). Service users, carers, academics and health professionals are recognised as having potentially different perspectives to contribute (Townend & Braithwaite, 2002). To avoid tokenism, and allow different parties to contribute as equal partners, all those involved need knowledge of the research process. The Academic Unit of Psychiatry at the University of Leeds held a series of workshops to provide research training and to introduce mental health service users, carers and workers to the idea of partnership research.
Public involvement in research can take place at a number of levels, reflecting both the degree of involvement and the philosophy behind it. This has been described as a continuum - from consultation (lowest level of involvement, no sharing of power in decision-making), through collaboration (ongoing involvement, active sharing of power in decision-making), to user-controlled research (highest level of involvement, users have decision-making power) (Faulkner, 2004; INVOLVE, 2004). The workshops had a clearly stated aim of developing collaborative research. In particular, the Academic Unit wished to build capacity for user involvement in its own research, by developing unit staff in partnership working as well as by providing research expertise to potential partners.
Suffolk's HSJ Award-nominated People Project aims to empower service users and carers. Participants attend workshops on subjects including getting heard. The project has secured a new round of funding to take it through to August 2006.
Background: The author aimed to study the prevalence and characteristics of care provision in Welsh adults with and without back pain, as well as their quality of life. The study used a country-wide and population-based setting from an independent dataset. Method Data were retrieved from and analysed in the Welsh Health Survey 2013. Information on demographics, lifestyle factors, regular care provision, and quality of life was obtained from household interviews. Chi-square tests, t-tests, and survey-weighted multinomial regression modelling were performed.
Results: Of 15 007 Welsh adults aged 16 years and above, 2751 (18.3%) reported they had been caring for a sick, disabled, or frail person. The carers tended to be between 40–74 years, female, had not obtained a bachelor's degree, with a body mass index >25, physically active, smokers, and living in indoor secondhand smoke households. People who lived in mid and western Wales tended to give care, compared with those who lived in southeast and north Wales. Carers with back pain experienced slight physical health and emotional problems, whereas carers without back pain experienced worse physical health and emotional problems, which could disrupt normal life.
Conclusion: Nearly one in five Welsh adults, with or without back pain, have provided care for other people. Future socioeconomic structure, health policy, and nursing programmes to reinvest in long-term care, such as a national psychiatric care initiative, should be encouraged, to lessen mental suffering alongside chronic pains and to optimise adult mental health and quality of life in all people, with or without back pain.
An action plan for the implementation of the recommendations set out in the Bamford Review of Mental Health and Learning Disability, an independent review of legislation, policy and service provision, concluded in August 2007. Broadly the review called for: continued emphasis on promotion of positive mental health; reform of mental health legislation; a continued shift from hospital to community-based services; development of a number of specialist services, to include children and young people, older people, those with addiction problems and those in the criminal justice system; and an adequate trained workforce to deliver these services. The plan sets out in detail key actions aimed at: promoting positive health, wellbeing and early intervention; supporting people to lead independent lives; supporting carers and families; providing better services to meet individual needs; and developing structures and a legislative framework.
Family carers of people with a severe mental illness play a vital, yet often unrecognized and undervalued role in Australian society. Respite care services can assist these family carers in their role; however, little is known about their access to these services. The paper addresses this knowledge gap. An exploratory field study was conducted throughout the eastern suburbs of Sydney, Australia, to identify and examine the factors influencing the use and provision of respite services for older carers of people with a mental illness. Semistructured, in-depth interviews, and structured self-completed questionnaires were conducted with older family carers, mental health care professionals, and respite care service providers. Additionally, relevant documents (local policies, strategic plans and reports on respite care) were reviewed. It was found that current respite services are problematic for older family carers of Australians with a mental illness, signalling the need for concerted efforts by carers, health professionals, and service providers to improve access. Changes to respite provision and utilization are recommended.
Between March and May 2015, the Department of Health asked people and organisations to share their views about strengthening the rights and choices of people to live in the community, especially people with learning disabilities, autism or mental health conditions. This document summarises the main trends in responses to the consultation. There were 481 responses to the consultation: half came from individuals or families, and half from organisations or groups. Most responses from individuals were from service users or family members and carers. Most responses from organisations were from voluntary sector groups, followed by local authorities and the NHS. The responses covered a range of themes, including: being part of the community; being listened to; the Mental Health Act 1983; budgets and finances; and physical and mental health.
We examine the physical and mental health effects of providing care to an elderly mother on the adult child caregiver. We address the endogeneity of the selection in and out of caregiving using an instrumental variable approach, using the death of the care recipient and sibling characteristics. We also carefully control for baseline health and work status of the adult child. We explore flexible specifications, such as Arellano–Bond estimation techniques. Continued caregiving over time increases depressive symptoms and decreases self-rated health for married women and married men. In addition, the increase in depressive symptoms is persistent for married women. While depressive symptoms for single men and women are not affected by continued caregiving, there is evidence of increased incidence of heart conditions for single men, and that these effects are persistent. Robustness checks indicate that these health changes can be directly attributable to caregiving behavior, and not due to a direct effect of the death of the mother. The initial onset of caregiving has modest immediate negative effects on depressive symptoms for married women and no immediate effects on physical health. Negative physical health effects emerge 2 years later, however, suggesting that there are delayed effects on health that would be missed with a short recall period. Initial caregiving does not affect health of married men. Published in 2009 by John Wiley & Sons, Ltd.
The website of a national campaign to improve public understanding of dementia. The campaign will run throughout March 2010 though TV, radio, press and online advertising feature real-people with dementia. The adverts target 40-60 year olds, and encourage people to find out about the many simple ways to help someone living with dementia. The campaign is part of measures to implement the National Dementia Strategy. The website provides links to help people support someone living with dementia, including advice for caring for someone with dementia; communicating well with someone with dementia; carers talking about their experiences of caring for someone with dementia. Links to services for carers, including respite care and mental health services are also provided.
This paper addresses a number of issues concerning the future prospects for social work and mental health in England and the implications of these for social work education. In particular the significance of interprofessional practice and education will be examined and these will be located within the wider context of the social work contribution to mental health services. The experience of social work in promoting the interests and involvement of service users and carers and of working within a holistic model will also be recognised. The particular value of the social work contribution to mental health in both mental health and non-mental health settings is emphasised and attention is paid to how this could be strengthened and extended in the light of the opportunities for positive and creative developments offered by the introduction of the new 3-year degree. These will include the development of shared learning with other professional groups and the need to prepare social work students for practice within a rapidly changing world.
In 2009, The Social Care Institute for Excellence introduced guidelines for practitioners to support families in which parents have mental health problems. Here, Scie presents a case study demonstrating how the guidance could be successfully applied
A postal survey of forensic psychiatric facilities in England and Wales was undertaken to obtain information about the services provided for carers of in-patients within these services.
Forensic psychiatric services vary in the support and facilities provided for carers. Many do not comply with current legislation for carers. Most units informed carers of their rights to have an assessment, but only a minority provided facilities for carers from Black and minority ethnic backgrounds.
Forensic psychiatric services should meet standards for the involvement and support of carers in mental health settings, and comply with legislation for carers.
OBJECTIVE: To compare the mental health and vitality of people caring for a family member with a disability with those of the general population. Second, to identify factors experienced by carers that put them at risk of poor mental health and vitality.
DESIGN: Cross-sectional design where logistic and multiple regression analyses were used to compare rates of mental health problems and vitality between carers and the general population while controlling for demographic characteristics. In addition, logistic and multiple regression using data from the survey of carers were used to identify risk factors for poor mental health and vitality that were particular to caregiving.
PARTICIPANTS AND SETTING: A randomly selected representative survey of 1002 carers from the Australian Centrelink administrative database (June 2006) who received government payments to care for a person with a disability or severe medical condition, or a person who was frail aged. A sample of 10,223 non-carers was drawn from the fourth wave of the Household, Income and Labour Dynamics in Australia Survey, a nationally representative household panel survey (August 2004 to February 2005).
MAIN OUTCOME MEASURES: Mental health and vitality as measured by the Medical Outcomes Study 36-item Short-Form Health Survey.
RESULTS: Compared with the general population, carers were at significantly greater risk of having a mental health problem and lower levels of vitality, even after controlling for demographic characteristics. For carers, the risk factors for poor mental health and lower levels of vitality were caring for a person with a disability with higher care needs, experiencing greater levels of financial stress, lower levels of support and worse family functioning.
CONCLUSION: Carers are at greater risk of mental health problems and lower energy levels than the general population.
Background: Worldwide with ageing populations, the numbers of informal carers are likely to increase. Although being a carer is often satisfying, it can be challenging and require support. Volunteer-provided carer mentoring services where carers are supported by volunteer mentors are one such intervention. However, little is known about the impact of mentoring, carers’ experiences or the mechanisms by which these schemes may work. Previous quantitative findings have been inconsistent suggesting a different, mixed methods approach using qualitative and quantitative methods may be valuable.
Objectives: Objectives were to explore two main questions: whether mentoring had a significant positive effect on carer mentees in terms of mental health, quality of life and confidence in caring and to explore how carers experience and perceive the process and benefits of mentoring. In addition, the study aimed to suggest possible mechanisms to understand how mentoring may benefit carers.
Methods and setting: Mixed methods (quantitative questionnaires and depth interviews) investigated an established mentoring service provided by volunteer mentors. During the study period, 28 carers received mentoring. Of these, 25 carers completed structured questionnaires both before and after mentoring, to determine whether mentoring had an impact on carer wellbeing and confidence in caring. Depth interviews were also undertaken with 11 purposively sampled carers to explore how carers experience and perceive the process and benefits of mentoring.
Results: Statistically significant improvements in carer anxiety (p < 0.001), depression (p < 0.001), quality of life (p = 0.02) and confidence in caring (p < 0.05 on all dimensions except one) were found. Depth interviews revealed that carers were very positive about mentoring and highlighted many benefits. Findings suggested emotional support, information provision, problem solving facilitation and gaining new perspectives may be mechanisms by which mentoring achieves positive outcomes. Mentor personal characteristics, experiences and training are possible facilitators of the process.
Conclusions: Carer mentoring services can be a valuable form of carer support that falls somewhere between formal and informal support. Adopting mixed methods permitted greater understanding of how mentoring may benefit carers and has implications for mentor recruitment and training. The fact that mentoring can be provided by volunteer mentors makes it an attractive, potentially cost-effective means of supporting carers.
A consultation on the delivery plan of the Welsh Government’s strategy to improve mental health and well-being, for the period 2016-19. The strategy consists of five chapters and is underpinned by 18 outcomes which are set out in this document. Strategy outcomes and delivery plan priority areas have been mapped against the goals of the Well-being of Future Generations (Wales) Act (2015). The priority areas identified in the delivery plan are: all children have the best possible start in life, enabled by giving parents / care-givers the support they need; all children and young people are more resilient and better able to tackle poor mental well-being when it occurs; children and young people experiencing mental health problems get better sooner; people at working age are more resilient and better able to tackle poor mental well-being when it occurs; people with mental health problems, their families and carers are treated with dignity and respect; services meet the needs of the diverse population of Wales; People with a mental health problem have access to appropriate, evidence based and timely services; People of all ages experience sustained improvement to their mental health and well-being through access to positive life chances; Wales is a ‘Dementia Friendly Nation’;The quality of life for older people is improved, particularly through addressing loneliness and isolation.
Original document on the Welsh Government website.
Reports on an evaluation of the efforts of the Royal United Hospital (RUH) Bath to improve the support offered to people with dementia and their family carers. The intervention included the recruitment of three part-time dementia coordinators, a seven-day older adult mental health liaison service with nurses and a psychiatrist, additional staff training and an increased emphasis on arts and music in the wards. An evaluation survey, carried out by RICE (The Research Institute for the Care of Older People), then explored the carers' experiences of the quality of care of the person with dementia received from admission to discharge while an inpatient at the hospital. Overall 181 carers completed the survey from a sample across five wards (22 of these were in the pre-implementation group). The main areas carers were impressed with were: the caring attitude of staff, the general care received and flexible visiting times. The main areas carers were displeased with were staffing levels, staff having limited time, lack of communication, wanting to speak to a doctor more and the need for better planning and discharge. It is noted that only a small number of the surveys could be collected before the intervention began, but the surveys did indicate an improvement in care. (Original abstract)
BACKGROUND: Attention is currently focused on family care of stroke survivors, but the effectiveness of support services is unclear. We did a single-blind, randomised, controlled trial to assess the impact of family support on stroke patients and their carers.
METHODS: Patients with acute stroke admitted to hospitals in Oxford, UK, were assigned family support or normal care within 6 weeks of stroke. After 6 months, we assessed, for carers, knowledge about stroke, Frenchay activities index, general health questionnaire-28 scores, caregiver strain index, Dartmouth co-op charts, short form 36 (SF-36), and satisfaction scores, and, for patients, knowledge about stroke and use of services, Barthel index, Rivermead mobility index, Frenchay activities index, London handicap scale, hospital anxiety and depression scales, Dartmouth co-op charts, and satisfaction.
FINDINGS: 323 patients and 267 carers were followed up. Carers in the intervention group had significantly better Frenchay activities indices (p=0.03), SF-36 scores (energy p=0.02, mental health p=0.004, pain p=0.03, physical function p=0.025, and general health perception p=0.02), quality of life on the Dartmouth co-op chart (p=0.01), and satisfaction with understanding of stroke (82 vs 71%, p=0.04) than those in the control group. Patients' knowledge about stroke, disability, handicap, quality of life, and satisfaction with services and understanding of stroke did not differ between groups. Fewer patients in the intervention group than in the control group saw a physiotherapist after discharge (44 vs 56%, p=0.04), but use of other services was similar.
INTERPRETATION: Family support significantly increased social activities and improved quality of life for carers, with no significant effects on patients.
Background The growing global epidemic of HIV/AIDS has a significant impact on the lives of both people living with HIV/AIDS and their family members including children. Children of parents with HIV/AIDS may experience an increased responsibility of caregiving in family. However, limited data are available regarding the caregiving experience and its impact on psychosocial well-being among these children. This study was designed to address these issues by using qualitative data collected from children affected by HIV/AIDS in China.
Methods The qualitative data were collected in 2006 in rural central China, where many residents were infected with HIV/AIDS through unhygienic blood collection procedures. In-depth individual interviews were conducted by trained interviewers with 47 children between 8 and 17 years of age who had lost one or both parents to AIDS.
Results Findings of this study suggest that many children affected by AIDS had experienced increased responsibilities in housework and caregiving for family members. Such caregiving included caring for self and younger siblings, caring for parents with illness and caring for elderly grandparents. Positive impacts from children's participation in family caregiving included personal growth and emotional maturity. Negative consequences included physical fatigue, psychological fear and anxiety and suboptimal schooling (dropping out from school, repeated absence from school and unable to concentrate in class).
Conclusion While the increased caregiving responsibilities among children reflected some cultural beliefs and had some positive effect on personal growth, the caregiving experience generally negatively effected the children's physical and mental health and schooling. The findings in the current study suggest that community-based caregiving support is necessary in areas with high prevalence of HIV and limited resources, especially for the families lacking adult caregivers. In addition, social and psychological support should be made available for children participating in family caregiving.
The effects of caregiving on mothers of adults with intellectual disability was examined by determining whether there are differences in quality of life and related factors between mothers with different employment status. Study participants were 302 working-age mothers who had adult children with intellectual disability based on the 2008 census survey on intellectual disability carried out in Hsinchu, City, Taiwan. Results revealed that nonemployed mothers are more likely to have a lower level of health status, including the WHOQOL Physical Health domain, than are mothers employed fulltime. Multiple regression analysis showed that mothers' quality of life was significantly determined by the availability of a person with whom they could share care work, family income, social support, and employment status.
Informal carers of an adult with mental illness have asked that respite care be an integral component of mental health service provision. The present study involved a pilot investigation of the effectiveness of accessing respite care for carers of individuals with a mental illness. It was hypothesised that compared to carers who have not accessed respite care, carers who access respite care would report lower burden and distress, higher life satisfaction and better health after their use of respite care. The study used a respite care group and comparison group of respite care non-users with a pre- and post-respite assessment, and 3-month follow-up design. Participants were 20 carers recruited through carer organisations; 10 carers who accessed respite and 10 carers who had never accessed respite. As expected, the respite care group reported a decrease in burden, but unexpectedly also reported an increase in stress, whereas the comparison group did not change over time. Further research is needed to explore the potential benefits and possible risks associated with different types of respite care using large samples within randomised controlled trials in order to inform respite care policy and service planning.
Risk is a central defining feature and area of concern in adult social care provision, but what do we actually know about how service users, carers and practitioners define and manage risk? This question is increasingly important as current policy advocates greater service user choice and control through a range of self-directed support mechanisms, and statutory duties and professional boundaries are challenged. This paper reports the results of a recently completed UK based scoping review that investigated how different groups of adult social care service users and service providers perceive and understand the everyday risks they face. It highlights how different management strategies are also adopted by different groups of people, which can lead to tensions and potential conflict between practitioners, service users and informal carers. However, whilst some areas of risk in adult social care have been the focus of considerable research, others appear to have been largely ignored. The voices of some groups of users remain hidden and apparently of little concern. These gaps and inconsistencies will be identified and discussed in relation to current policy developments and their implications.
A guide for carers who are concerned that the person they care for is unable to take action or make some or all decisions in relation to their finances, personal welfare or health, due to a mental disability or severe communications difficulties, such as a stroke. It provides information on how the Adults with Incapacity (Scotland) Act 2000 can help, the purpose of guardianship and intervention orders, considerations to make before taking forward an application for a guardianship or intervention order, deciding what powers to apply for, how to make an application, procedures and costs, what to do next when you have been appointed, and frequently asked questions.
There is increasing emphasis on enhancing consumer and carer participation in the planning and provision of mental health services. However, health professionals, consumers, and carers have different perceptions about what constitutes optimal care; identifying, negotiating, and meeting their respective needs can be challenging. The aim of the paper is to highlight the challenges of facilitating carer participation in daily practice and emphasise the broader issues that would benefit from more extensive discussion among health professionals. By examining the strategies used to enhance consumer participation, there is the potential to avoid many of the mistakes of the past and create a flexible and responsive framework to increase carer involvement. The authors anticipate that this discussion will resonate with many clinical staff as well as carers themselves. Identifying barriers to carer participation opens the way to promoting collaboration and enhancing care.
It is possible that effective information-sharing strategies to improve the quality of care can be developed. Service users, carers and professionals should all be involved in generating such strategies. The ideal information-sharing strategy can be tailored to individuals' needs and requires professionals to make carefully weighted judgements. Professionals need training to help them to understand the roles of carers and to work with carers effectively. Training should be accredited in order to encourage attendance. Fear about breaching patient confidentiality has frequently created a barrier to effective involvement of carers in mental health care.
Background: The evaluation of multi-dimensional outcomes such as health-related quality of life (HRQL) is particularly relevant in dementia where the disease can compromise all areas of functioning. The nature of dementia can make self-report difficult, yet the subjective nature of HRQL makes the value of proxy reports limited. Previous work suggests that there are domains of HRQL that are unique to dementia. We aimed to develop a conceptual framework of HRQL in dementia from the perspective of people with dementia and their carers and to examine differences in the reports of the HRQL of these two groups.
Methods: We combined existing literature and new qualitative data to develop the conceptual framework and analysed qualitative data using content analysis.
Results: We identified five domains: daily activities and looking after yourself, health and well-being, cognitive functioning, social relationships and self-concept, and each was defined by specific descriptive components. There were differences between people with dementia and carers in the way they described these domains.
Conclusions: We have developed a conceptual framework of HRQL in dementia that incorporates the views of people with dementia and their carers. This provides the basis for the development of a new measure of HRQL in dementia (DEMQOL). Copyright © 2005 John Wiley & Sons, Ltd.
This study provides qualitative evidence on the views of service users, their carers and practitioners on the implementation of Part 3 of the Mental Health (Wales) Measure 2010. This part of the Measure is concerned with assessments of former users of secondary mental health services and enables individuals, who have previously been in receipt of secondary mental health services, to refer themselves directly back to secondary services for assessment. This allows assessments to take place without individuals necessarily needing to go to their GP or elsewhere for a referral, therefore improving access. The report draws upon the interviews conducted with service users, carers and practitioners. Findings under each of the specific review questions are presented in turn, covering: discharge period; access to information about entitlement to assessment; the experience of reassessment; the experience of self-referral; and satisfaction with outcomes.
Ethical dilemmas in community mental health care is the focus of this article. The dilemmas are derived from a discussion of the results of a qualitative research project that took place in five countries of the European Union. The different stakeholders are confronted with the following dilemmas: community care versus hospital care (clients); a life with care versus a life without care (informal carers); stimulation of the client toward greater responsibility versus protection against such responsibility (professionals); budgetary control versus financial incentives (policy makers), and respect for the client versus particular private needs (neighbourhood residents). These dilemmas are interpreted against the background of a value based ethical model. This model offers an integral approach to the dilemmas and can be used to determine policy. The dilemmas are discussed here as the result of conflicting values-namely autonomy and privacy, support and safety, justice and participation, and trust and solidarity.
Contains a general introduction to the topic and drawing on a range of current initiatives, pointers towards good practice in relation to each of the components of effective involvement. A range of evaluation tools are offered which may be useful in charting progress and identifying the next steps to be taken.
When caring for an older relative with dementia, family members experience considerable distress and burden. Literature reviews show that supportive group interventions for these caregivers have significant positive effects on improving their distress and quality of life, but not consistent and conclusive. Limited research is found in Asian populations. This study tested the effectiveness of a 12-session bi-weekly mutual support group program for Chinese family caregivers of a relative with dementia in Hong Kong, when compared with standard family support service. An experimental study with pre- and post-test, parallel groups design was conducted. A randomized sample of 78 family caregivers, 39 in each of the experimental and control groups, from one regional dementia care center participated in the study. A protocol was specifically designed by an advanced practice nurse to guide the mutual support group process and the facilitator and peer leader training, based on evidence from the literature on family support group intervention in Western countries. The results of ANOVA tests indicated that the mutual support group participants had significantly greater improvements in distress levels and quality of life than the control group. There were only mild changes in the demands for mental health services in both groups at post-test. These findings support the effectiveness of mutual support groups to offer psychosocial support to Chinese family caregivers in dementia care beyond routine community mental health care.
Objective: The purpose of the present study was to evaluate the effectiveness of a group psychosocial intervention for children (aged 12–18) of a parent with mental illness (copmi).
Method: A treatment and waitlist-control design study with pre- and post-treatment, and 8 week follow up, was carried out. The treatment (n = 27) and control (n=17) groups were compared on three groups of dependent variables: intervention targets (mental health literacy, connectedness, coping strategies), adjustment (depression, life satisfaction, prosocial behaviour, emotional/behavioural difficulties), and caregiving experiences.
Results: Group comparisons failed to show statistically significant intervention effects, but reliable clinical change analyses suggested that compared to the control group, more intervention participants had clinically significant improvements in mental health literacy, depression, and life satisfaction. These treatment gains were maintained 8 weeks after treatment. Participant satisfaction data supported these treatment gains.
Conclusions: Given study limitations and the modest support for intervention effectiveness it is important that this and other similar interventions should continue to be revised and undergo rigorous evaluation.
Research to identify and assess informal carers of people with a mental illness cared for by the Gloucester Assertive Community Treatment Team and to examine their needs. Carers were assessed using a standardised care programme approach and the help they provided, the effect on their lives and the problems encountered were examined.
To identify and evaluate the reliability and quality of educational materials provided to individuals with schizophrenia and their carers. Materials used by mental health professionals working in community and in-patient settings were collated. Two independent raters used the ‘Discern’ questionnaire to assess the publications.
Fifteen documents were identified, but only 11 were suitable for evaluation. Interrater reliability of ratings using the Discern tool was highly significant. No educational package scored maximum marks, but four scored in the good quality range. About a fifth of the materials in widespread use were assessed as of poor quality.
The use of a rating instrument to assess the quality of educational publications appears to be a reliable and acceptable way to identify the strengths and weaknesses of widely available materials. Staff can use these data to assess the quality of their preferred materials against other publications and make an informed selection.
Looks at standard six of the National Service Framework, which enables carers to have an assessment on their own health and support needs.
Although the focus on carers has increased in general psychiatry, the same cannot be said for forensic psychiatry. This is despite the fact that carers of mentally disordered offenders may experience additional pressures including in some cases, being the victim of the patients' crime. A survey of medium and high secure units in England and Wales was conducted to investigate support provided to carers of mentally disordered offenders. Most units provided some form of support, but there was variation in the types and amount of support provided. Services identified benefits of providing carer support that included improving relationships and communication between staff and carers and improving patient and carer well-being. Difficulties providing support included logistical problems such as a lack of resources and stakeholder issues such as carers' previous negative experiences with mental health services. Recommendations are offered for units hoping to improve the service they provide to carers of mentally disordered offenders.
This article reports on the first extensive survey of Approved Social Worker (ASW) activity under the Mental Health (Northern Ireland) Order 1986. The integrated health and social services organizational structure, the adverse effects on individual mental health of the legacy of thirty years of civil conflict and the move from hospital to community care are significant features which have influenced the delivery of mental health social work services locally. The practice and experience of ASWs was surveyed by postal questionnaire and user and carer experience of compulsory hospital admission was investigated by a series of focus groups. The study revealed that two‐thirds of ASWs had experience of acting as an applicant in compulsory hospital admission during the past two years. Nearly half (42 per cent) of these ASWs had reported experience of between one and five admissions and one‐tenth had completed over twenty admissions in the two‐year period. In only a small minority of cases did joint face‐to‐face assessment with the General Practitioner (doctor) take place; nearly half of ASWs reported difficulties in obtaining transport; and only one‐fifth of ASWs had experience of acting as a second approved social worker. Half of ASWs reported experience of guardianship, either as applicant or in making the recommendation. Both service users and carers reported a lack of understanding about the role of the ASW and complained about the lack of alternative resources that ASWs could use to prevent hospital admissions. These findings are discussed and a number of recommendations are proposed for improvements to approved social worker practice.
Participation in activity is essential for the psychological well-being of people with dementia. The potential benefits of home-based activity programmes may depend on family carers, but little is known about their experience. This study aimed to elicit carers' experiences of involving the person with dementia in activity. Thirty in-depth interviews (i.e. initial and follow-up) were carried out with 15 co-resident carers of people with dementia who were recruited through local community mental health teams. Data were analysed using a grounded theory method. Overall, findings from initial interviews were taken back to the participants at the follow-up interviews. Five activity patterns were identified, which ranged from their usual activity patterns along a continuum through recognizable, illogical, irresponsible and finally reaching a dispossessed pattern. Carers used particular strategies and experienced particular emotional responses along this continuum. This work highlights the complex, temporal and dynamic nature of family carers' involvement in activity engagement. Clinician's interventions could be enhanced by: (1) recognizing the long-term experience of carers in decision making; (2) understanding the strategies used; (3) allowing carers to talk through and share their experiences in a non-judgmental way; (4) ensuring that carers are happy with any suggested interventions.
Background: Siblings of children with chronic illness and disabilities are at increased risk of negative psychological effects. Support groups enable them to access psycho-education and social support. Barriers to this can include the distance they have to travel to meet face-to-face. Audio-conferencing, whereby three or more people can connect by telephone in different locations, is an efficient means of groups meeting and warrants exploration in this healthcare context. This study explored the feasibility of audio-conferencing as a method of facilitating sibling support groups
Methods: A longitudinal design was adopted. Participants were six siblings (aged eight to thirteen years) and parents of children with complex neurodevelopmental disorders attending the Centre for Interventional Paediatric Psychopharmacology (CIPP). Four of the eight one-hour weekly sessions were held face-to-face and the other four using audio-conferencing. Pre- and post-intervention questionnaires and interviews were completed and three to six month follow-up interviews were carried out. The sessions were audio-recorded, transcribed and thematic analysis was undertaken.
Results: Audio-conferencing as a form of telemedicine was acceptable to all six participants and was effective in facilitating sibling support groups. Audio-conferencing can overcome geographical barriers to children being able to receive group therapeutic healthcare interventions such as social support and psycho-education. Psychopathology ratings increased post-intervention in some participants. Siblings reported that communication between siblings and their family members increased and siblings’ social network widened.
Conclusions: Audio-conferencing is an acceptable, feasible and effective method of facilitating sibling support groups. Siblings’ clear accounts of neuropsychiatric symptoms render them reliable informants. Systematic assessment of siblings’ needs and strengthened links between Child and Adolescent Mental Health Services, school counsellors and young carers groups are warranted.
This Service framework for learning disabilities is one of a set of Service Frameworks which sets out standards for health and social care to be used by service users and carers, to help them understand the standard of care they can expect to receive in Northern Ireland. The Service Framework for Learning Disability aims to improve the health and wellbeing of people with a learning disability and their carers and families by promoting social inclusion, reducing inequalities in health and social wellbeing and improving the quality of health and social care services. The Framework sets standards in relation to: Safeguarding and Communication and Involvement in the Planning and Delivery of Services; Children and Young People; Entering Adulthood; Inclusion in Community Life; Meeting General Physical and Mental Health Needs; Meeting Complex Physical and Mental Health Needs; At Home in The Community; Ageing Well; and Palliative and End of Life Care.
Family carers provide more care than the combined efforts of the NHS and social services departments, and their value to the economy is estimated to be around £34 billion a year (Hirst, 1999). However, many carers have health problems of their own. Using three standardised measures to screen for activity limitation (ADLs), depression (GHQ-28) and health related quality of life (HRQoL) (SF36), a study of carers of people aged 75 and over referred consecutively to social services departments in adjacent inner city areas showed a high prevalence of limitations in activities of daily living (ADLs), that a substantial proportion (42 per cent) had GHQ-28 scores high enough to suggest depression and their scores on the SF-36 showed that many carers were low in vitality and tired. Co-resident carers had poorer psychological health and more difficulties with social functioning than non-resident carers, and were older, but were not significantly different in self-reported physical health. Whether carers wanted the cared-for person to remain at home for as long as possible depended on their relationship (spouse or not) and whether the older person was depressed. The carer’s own psychological health was not related to their attitude to institutional care. The study suggests that targeting social care resources on carers showing psychological distress may not reduce downstream expenditure on long-term care.
Older people experiencing dementia are twice as likely to fall with consequences of serious injury, reduction in everyday activity, admission to long-term care and mortality. Carers of people with dementia are themselves at greater risk of physical and mental ill health, which increases as the dementia progresses. Unsurprisingly, carer burden also increases when a care-recipient falls. The aim of this study was to explore the experiences of falling of community-living older people with dementia and their carers. A qualitative approach was taken using interpretative phenomenological analysis. Nine older people with predominantly Alzheimer's disease and their ten carers were recruited from a large mental health National Health Service trust and participated in one-to-one and joint in-depth interviews. Three dyads participated in repeat interviews. Three focus groups were also carried out, with nine older people experiencing memory problems and 12 carers from a local Alzheimer's Society branch. The antecedents, falls events and consequences of falls were discussed. This paper reports specifically on the impact of falls on the caring relationship. Three themes emerged: ‘learning as you go’, ‘we're always together’, ‘nobody was interested’. The findings demonstrate how falling accentuates the impact of dementia on the dyad. Spouse-carers' discussion of their own falls emphasise the need for joint assessment of health and wellbeing to reduce carer burden and preserve the couplehood of the dyad.
Statistics on service provision in Scotland to older people, people with learning disabilities, people with mental health problems, disabled people, carers and other users. Provides figures on domiciliary care, day care, residential care, private nursing homes, hospitals and special needs housing for each user group.
Original document on Scottish Government website.
A pioneering nurse is leading a pilot programme to tackle physical and mental health problems among young carers.
The Adults with Incapacity (Scotland) Act 2000 (AWI) sets out the system for protecting the welfare of adults in Scotland who are unable to take decisions for themselves. Its aim is to help adults (aged 16 plus) who lack the capacity to make decisions on some or all aspects of their lives. It enables health care professionals, carers or others to have legal powers to make financial, welfare and health care decisions on their behalf. Part 4 of the Act deals with the management of financial affairs of adults with incapacity who live in what are termed authorised establishments, the majority of which are care homes. It enables managers of such authorised establishments to manage the finances of resident adults who are incapable of managing them themselves. Authorised establishments are overseen by one of three supervisory bodies: Health Boards; The State Hospital and the Care Commission. This research was commissioned by the Scottish Government Health Analytical Services Division on behalf of the Primary and Community Care Directorate, Community Care Division.
The aims of the study were to: - Assess the effectiveness of Part 4 of the Act including: the uptake; benefits to residents; and key stakeholders’ experiences of using the provisions in Part 4 of the Act, - make recommendations on any action needed.
Mental health: A year and half after the groundbreaking 10 high-impact changes were published comes a new version specifically for mental health services, writes Jackie Ardley
The author lists the Care Services Improvement Partnership's 10 high-impact changes for mental health services that have the greatest positive impact on service users and carer experience, service delivery, outcomes and staff.
This chapter reviews a community based action research project undertaken within the Older People's Directorate of Shropshire's Mental Health NHS Trust. The project investigated how statutory bodies might best facilitate the involvement of carers. The work focused on carers of mentally infirm older people and the carers of dementia sufferers. The research sought to explore, and find solutions to, known barriers to participation such as poor communication routes, paternalistic organisation cultures and a non-homogenous user group. It was conducted in three phases. Phase one evaluated existing provision; phase two comprised a series of psycho-educational sessions with carers. The final phase examined strategies for reducing delays between diagnosis and referral. Three main lessons emerged from the project: (1) the frequently divergent needs of carers and care agencies (2) the alienating effect of professional jargon (3) the importance of setting realistic expectations.
Few researchers have explored family carers’ perspectives of smoking by their family members with mental illness, despite smoking rates remaining high for people with mental illness. In-depth qualitative interviews with twelve South Australian family carers explored their experiences and views of providing care for people with mental illness who smoke. Data were analysed thematically. Around the central theme of the caring role within the context of mental illness and smoking, were three interrelated themes: (1) responsibility; (2) accommodation; and, (3) dissonance. Carers struggled physically, philosophically and emotionally with perceived responsibilities involving their family member's smoking. They felt isolated and asserted as there was limited support from service providers to assist them. Carers are important agents within the person's immediate environment who could potentially help them to improve their smoking cessation success. Community services aiming to support smoking cessation support for this population need to incorporate the role of family carers.
This review focuses upon women aged 45-60: an under-researched subgroup of the adult female population. Women in mid-life occupy a unique position in the lifespan at the intersection of a number of age-related and lifelong pathways. The lives of these women can be distinguished from those of both older and younger women along a number of important dimensions including their family and working lives, economic situation, general health, and the complexity of their roles both inside and outside the home. Personal and economic changes are common at mid-life as are physical changes; all have particular and distinct implications for women’s emotional and psychological health. The aim of this review is to address a knowledge deficit. Though some evidence exists about the extent of psychological distress in women aged 45-60, far less has been gathered about the causes of such difficulties or the challenges to mental health associated with mid-life experience. The lifespan is routinely conceived as containing a number of discrete stages: women’s lives are characterised by experiences that have overlapping threads and meanings and these combine with age-related issues in ways that warrant focused attention. This review draws evidence from a range of sources to identify the key parameters of mid-life women’s lives. These include: the areas and types of risk to their mental health from a range of sources, the extent of psychological distress, and the ways in which research and policy could reduce the challenges that commonly face women in mid-life and alleviate or prevent mental ill health. It should be noted at the outset that the age group 45-60 years does not map perfectly on to the existing field of research: researchers and national statisticians punctuate the life span in whatever ways they see fit. So, although we have tried to locate research which matches the age span of interest, inevitably we also draw upon the findings of research which only offers a close approximation.
This paper describes a series of practice and service development initiatives to incorporate the family-inclusive approach into the newly established Early Intervention in Psychosis Service in Berkshire, England. Following a local study on carers' experiences and needs from those who cared for a young adult with a first-episode psychosis (FEP), a series of flexible services for this group of carers has been developed incorporating the much-researched psycho-educational family interventions. The findings of our local phenomenological study on the carers for young adults with FEP clearly specified the unique needs of this group of carers and that well-established approaches in family work and carers support facilities may have to be adapted to meet such needs. This paper reports the service development process through which a series of specially designed carers' services were set up for carers caring for a young adult with FEP. These services were developed to address carers' needs for knowledge, skills and support to cope with their caring roles and situation, from the stressful beginning of a potentially long caring journey.
Opinion Research Services (ORS) was commissioned by Welsh Government in June 2013 to undertake qualitative research to support the Duty to Review the Mental Health (Wales) Measure 2010.
1.2 Information and data are gathered by Welsh Government from a range of sources to inform the Review including this study, regular submissions from health board/local authority services, health board primary care satisfaction surveys and third sector surveys. Welsh Government is responsible for coordinating all inputs to the Review and for final reporting to Welsh Ministers.
1.3 This study by ORS provides qualitative evidence on the views of service users, their carers and practitioners on the implementation of Parts 1 to 4 of the Measure. The findings are presented in four separate reports; one for each part of the Measure and an overall summary report in Welsh and English versions.
1.4 An interim report1 published in 2014 presents the background and methodology for this study in some detail which are not repeated in the final reports. This report presents findings from qualitative interviews conducted between July 2014 and April 2015 involving participants with direct experience of Part 1 of the Measure.
1.5 The Mental Health (Wales) Measure 2010 introduced a number of changes relating to the assessment of and treatment of people with mental health problems in Wales, the essential requirements of which are set out in four parts: Part 1: Local Primary Mental Health Support Services Part 2: Coordination of and Care and Treatment Planning for Secondary Mental Health Users Part 3: Assessments of Former Users of Secondary Mental Health Services Part 4: Mental Health Advocacy
Original report (pdf) on the Welsh Government website.
Caring for an ill or disabled relative is a life experience shared by many women. Based on data from a representative sample of women in Israel, this study examined the demographic, employment, and health characteristics of women caregivers, focusing on the extent of care provided and its effect on the caregiver's physical and mental health. Using the conceptual framework of caregiving-related stress, we compared women who care for a parent, and women who care for another relative. The study found more instrumental difficulties, which lead to greater burden, among women who care for a disabled relative who is not a parent. Furthermore, larger proportions of women caring for a disabled relative who is not a parent report depressive mood symptoms, poor health status, and the need for psychological counseling. The findings suggest that formal service providers, chiefly social workers, may better support women caregivers once they are aware of the needs arising from disparate contexts of care.
Background: Many studies have assessed the impact of caregivers' work activities on the caregiver. There is growing concern about the ever-increasing problems, both physical and physiological, faced by health care workers who provide care for the ill and incapacitated.
Aim: The aim of the study was to examine what, if any, differences exist between male and female caregivers. This study primarily focused on caregivers who were taking care of a family member.
Method: Three hundred and eighty-eight caregivers (280 females and 108 males) were recruited from 16 randomly selected home-care agencies in Southern Taiwan. The participants completed the Chinese Health Questionnaire-12 and the Self-Rated Health Scale. They also completed questionnaires drawn up specifically for the purpose of this study.
Results: Compared to the male caregivers, the female caregivers more often reported they suffered from symptoms of lack of well being, a decrease in psychosocial health and overall self-rated health.
Conclusion: The results reiterate the importance of considering gender differentiation in the caregiving role. Major differences were found in the extent to which negative health consequences were experienced by the male and female caregivers. The results suggest that caregivers, especially female caregivers, urgently require adequate professional health care assistance in order to reduce the negative physical and physiological effects of caregiving on the health caregiver. Copyright © 2005 John Wiley & Sons, Ltd.
Objective: Demonstration studies of community treatment as an alternative to hospitalization have reported high degrees of satisfaction by family carers. We aimed to determine the extent of carer preference for hospital versus community treatment for acute mental illness in a routine setting where carers had experienced both service types.
Method: Patients who had contact with both a hospital inpatient service and a Crisis Assessment and Treatment (CAT) team within the previous 5 years were identified. Seventy-seven family carers of these patients completed a questionnaire which identified their preference for services, and psychological and demographic variables likely to be predictive of their choice.
Results: Only half the carers preferred a CAT service to treat their relative in the event of a future relapse. Psychological variables were better predictors of choice than were demographic variables.
Conclusions: The proportion of caregivers who prefer community treatment for acute psychosis may be smaller than previously thought. The lower carer satisfaction found here may be associated with the short-term interventions of Victoria's CAT teams, the severity of acute relapses and the duration of the patient's mental health problem.
Commissioning mental health is a complex area and expertise is varied. This article explains 'Values based' commissioning, which aims to put users' views at the heart of reshaping services. Values based commissioning aims to take a fresh look at what kind of services should be commissioned and why, with service users and carers working jointly with commissioners to lead commissioning decisions.
Increasingly, Australian government policy advances an expectation that consumer and carer participation will be present in all aspects of mental health service delivery. A review of the literature suggests that consumers and carers actively seek the opportunity to participate but are frequently hampered by barriers. However, government policy documents tend to discuss consumers and carers with regards to participation as though their needs and desires are essentially similar. This paper presents the findings of a qualitative research project involving in-depth interviews with carers and mental health nurses. The issue of conflict between the issues for consumers and carers emerged as a major theme. This issue is explored and discussed in light of the goals of current mental health policy. It is concluded that conflicting agendas are apparent and must be addressed if genuine participation in service delivery is possible for both consumers and carers.
The term leadership has been often applicable within the work domain, where development programmes are aimed at managers and lead organisations. However the government has recognised that changes in public services require the collaboration of many stakeholders working together in partnership and has placed at the core of its policies the need to include users and carers.
For the past decade nurse education has incorporated service user and carer perspectives into their programme and research agendas. Moving from rhetoric to the reality of embedding adult service user and carer knowledge into nurse education this paper discusses how this good practice was extended to young people under the age of 18. Globally, the mental health of young people is coming under the spotlight and based on this two “World Café” events focusing on young people and their mental well being were organised. Targeting a multi-agency audience the aim was to develop a partnership consortium, bringing together local organisations involved in promoting the mental well being of young people. This paper reports on the first World Café, led by two local young people's groups, ‘Florescent Adolescent’ and ‘Vocal’. Following the presentations four important areas were identified (1) Inclusive rather than exclusive (2) Crystal ball gazing — young people's futures (3) A hole in the net — catching young people at the right time (4) Exposing the hidden agenda. The day resulted in three collaborative research proposals and the realisation that young people need opportunity to participate through utilising more innovative ways of engaging with the professional adult world.
In many cases the consumers of mental health information and support are the families of mental health sufferers. The aim of the project was to understand resilience in people who live with or support a family member with a diagnosed or undiagnosed mental illness. Participants were 15 carers (one male, 14 female). Semi-structured interviews were transcribed and analysed using content analysis. Eight recurring themes emerged which indicated the challenges the carers faced and provided indications of the positive and negative personal, family and social factors that impacted on their lives. These themes were ‘Getting to CLAN WA’, ‘Accessing help including CLAN WA’, ‘Impact of living with a person who has a mental illness or problematic behaviour’, ‘Family and cultural issues’, ‘Communication within the family’,‘Coping strategies and evidence of resilience’, ‘Social support’ and ‘Notion of sacrifice’. There is still considerable work to do in supporting people who live with or support a family member in these circumstances. The findings demonstrate that individuals living with adversity can do more than just survive the process.
Stroke is a condition that affects both patients and family members who provide care and support. Because stroke is an unexpected traumatic event that suddenly forces family members into a caregiving role, caregivers often experience an overwhelming sense of burden, depression, and isolation; a decline in physical and mental health; and reduced quality of life. Caregiver health is inextricably linked to a stroke survivor's physical, cognitive, and psychological recovery. Evidence suggests that informational interventions alone are not as effective in meeting the complex needs of stroke caregivers as interventions that combine information with other support services. This article discusses issues related to stroke caregiving and proposes comprehensive strategies designed to meet the poststroke recovery needs of both patients and caregivers. Suggested strategies include a comprehensive assessment specific to caregiver needs, skills, and resources and case management services designed to provide continuity of care across the stroke-recovery trajectory.
A significant number of children and young people are caring for a parent or parents with mental health problems defined as serious or severe, and enduring. Children and young people with these responsibilities are often referred to as young carers. It is important that they are recognised as children and young people in the first instance, then as carers. And what helps these young people most is the support that is provided to their parents.
The objective of the longitudinal study was to monitor physical and cognitive changes in a population of 330 older people being supported at home by health services. The participants were 75 years and older and classified as having moderate-to-high needs. A total of 210 primary informal carers were recruited to determine their specific needs and how they coped as dependency levels of their care-recipients changed. Data were collected using six different tools. Two questionnaires were mailed out to participating carers. Assessments of care recipients were carried out at three sampling points over the study period. The clients showed a significant increase in physical dependency and an overall increase in cognitive impairment over time. Only 32% of carers lived with care recipients, and changes in dependency, cognitive changes, lack of respite and performing activities of daily living were all major stressors for informal carers. The needs of informal carers are reported and discussed in the context of recommendations of the Commission on the Future of Health Care in Canada.
Objective: To profile the Australian adults who are caring for a relative with a mental disorder.
Method: Data came from the 2007 National Survey of Mental Health and Wellbeing 2007 (NSMHWB), a nationally representative household survey of 8841 individuals aged between 16 and 85 years.
Results: Many people act as carers: 15% of the Australian adult population, or nearly 2.4 million individuals. The strongest predictors of being a carer are being female and being in a relatively older age bracket. Carers provide a range of emotional and practical supports to close relatives with a range of mental disorders, most notably high prevalence disorders. Their relatives’ health problems cause them considerable worry, anxiety and depression, and their caring role can be associated with high financial costs.
Conclusions: Carers are significant stakeholders in the mental health system. Providing support for carers is crucial, particularly because their own mental health and well-being may be affected by their care-giving role. The nature of this support should take into account their large numbers, their profile and the role they perform.
Objectives: To determine and prioritise what information dementia caregivers wish to know at the time of diagnosis and later on in the illness, and in what form this information should be presented.
Method: 100 carers were recruited from community mental health teams (CMHT) and a memory clinic (MC). A semi-structured Carer Interview was administered covering possible symptoms and management.
Results: Carers requested as much information as possible. There was no significant difference between CMHTs and the MC. After carers prioritised the information they wished to receive, we proposed a ‘rule of threes’. At diagnosis, carers want information about what dementia is, medications available and behavioural and psychiatric symptoms of dementia. In an early follow-up appointment, they want information about services, the course of the illness and what to do in a crisis. In a later follow-up appointment, they want information about support groups, benefits, and financial and legal issues. At a later stage, they want information about psychological therapies, the effects of the illness on carers and complementary treatments. Most carers wish to receive information from a health professional, backed up by written information.
Conclusions: The ‘rule of threes’ enables health professionals to make informed decisions about primacy of information and strategies to prevent carers becoming overloaded. Information should also be provided in written form and from support groups. Copyright © 2003 John Wiley & Sons, Ltd.
The National Institute for Mental Health England (NIMHE) was established in 2002, and from the beginning had a commitment to put people who use services at the centre of their work, and involve service users and carers in the planning and delivery of work. In 2004 the NIMHE executive team conduced a review of service users and carer involvement at all levels within NIMHE, with the aim of identifying what action was needed to develop a more co-ordinated and strategic approach. This article provides a brief overview of the review, its key findings and recommendations.
The Mental Capacity Act 2005 creates statutory provisions to empower and protect vulnerable people who lack the mental capacity to make their own decisions. Issued on 23 April 2007, the Code of Practice provides guidance on how the provisions of the Act will work on a daily basis for those caring for, or working with, people lacking mental capacity. The Code is important for professionals - such as doctors and social workers - but family, friends, and unpaid carers will also find it helpful. While certain groups of people are legally required to have regard to the Code when acting or making decisions on behalf of people lacking capacity, those who are not legally required to have regard to the Code are still encouraged to use it as a good practice guide. The Code incorporates good practice and case studies, and demonstrates how the principles of the Act can be applied flexibly in particular circumstances.
Rethink regularly carries out social survey research to monitor expert opinion on standards of mental health care. The recent Our Point of View survey, upon which this report is based, asked: are things getting better for the people who use mental health services, their families and friends at the beginning of the 21st Century in Britain?
Background: Relatives of people with psychosis experience high levels of distress. Interventions are needed which can reduce distress and are widely available.
Aims: This study presents the views of relatives on how to design a supported self-management intervention for relatives.
Method: Four focus groups were carried out and relatives were asked for their views on the content, format, support required, likely barriers and potential impact on the outcome of a self-management toolkit.
Results: Relatives were generally very positive about the development of a toolkit. Relatives had clear ideas about the design, emphasising particularly that it needs to be comprehensive, modular, supported and able to translate general information into the specific detail they require for their family member. Many of the ideas informed the development of Relatives Education And Coping Toolkit. Some suggestions, such as multiple modes of delivery, earlier access to the toolkit in primary care and peer support from other relatives, were not possible in this study but should be considered for future development.
Conclusions: Relatives supported the development of a supported self-management toolkit intervention. They also emphasised the importance of offering such interventions alongside other valued aspects of services including face-to-face contact with clinicians, peer support from other relatives and crisis support.
The role of families in supporting people with dementia is widely acknowledged in literature and UK government policy. The role of general practice in ensuring early and effective support for people living with mental health problems including dementia is also enshrined in UK policy. As part of a larger study, a total of 122 carers were asked to rate predefined aspects of the primary care response. For some responses they were also asked to provide a reason for their rating. The purpose of this study was to examine carers' accounts of contacts with general practitioners (GPs) and general practice teams when they were first approached with concerns about their relative. Findings suggest that, on average, carers rate the service as being at least ‘good'. However, their accounts describe a wide variety of experiences and demonstrate that expressed satisfaction does not necessarily reflect a satisfactory service. Both practitioner-related and carer-related issues were cited as reasons for their ratings. Implications for practice and research are discussed.
Purpose – The purpose of this study is to evaluate the effectiveness of user and carer involvement in a new one‐year postgraduate certificate course for Mental Health Officers (MHOs) in Scotland, covering the first year of its delivery (2009‐2010).
Design/methodology/approach – This was explored in two ways: first, by assessing the level of user and carer involvement against a modified framework; and second, by measuring students' confidence in working with people with mental health issues over the duration of the course, and through interviews with students and service users and documentary analysis.
Findings – The findings indicate user and carer “influence” and “partnership” over the design and delivery of the learning, teaching and assessment strategy, but no degree of “control” over any aspect of the course. Teaching provided by users and carers was associated with marked improvement in students' confidence in engaging with and upholding the rights of users and carers in the context of the MHO role. Students reported increased awareness of the lived reality of compulsory treatment. Users reported benefits from feeling they had helped facilitate future good practice.
Research limitations/implications – The research design does not allow for causal links to be made between increases in student confidence and user and carer involvement.
Practical implications – The study identified substantial barriers to effective user and carer involvement but confirmed its potential as a positive change agent for post‐qualifying social work education.
Originality/value – This study contributes to the evidence base by demonstrating the value of service user and carer involvement in post qualifying social work education.
Sixth in the series on the National Service Framework, this article describes a national education and support programme for carers developed by the National Schizophrenia Fellowship.
This national conference was a partnership event between the Scottish Government, Age Concern Scotland, Inclusion Scotland, the Scottish Association for Mental Health and the Scottish Consortium for Learning Disability which was aimed at raising awareness of the new Act among people who use services and their family members. It was an event where audience participation was crucial to ensure that their views and concerns would be reflected through a conference report which would be sent to Chairs of Adult Protection Committees to assist them with their strategic planning. This report highlights the themes that emerged on the day.
Continuity of care is considered by patients and clinicians as an essential feature of good quality care in long-term disorders, yet there is general agreement that it is a complex concept and the lack of clarity in its conceptualisation and operationalisation has been linked to a deficit of user involvement. In this paper we utilise the concept of the ‘patient career’ to frame patient accounts of their experiences of the mental health care system. We aimed to capture the experiences and views of users and carers focusing on the meanings associated with particular (dis)continuities and transitional episodes that occurred over their illness career. As part of a large longitudinal study of continuity of care in mental health a sub-sample of 31 users was selected together with 14 of their carers. Qualitative interviews framed around the service user's illness career explored general experiences of relationship with services, care, continuity and transition from both user and carer perspectives. Five key themes emerged: relational (dis)continuity; depersonalised transitions; invisibility and crisis; communicative gaps and social vulnerability. One of the important findings was the fragility of continuity and its relationship to levels of satisfaction. Supportive, long-term relationships could be quickly undermined by a range of factors and satisfaction levels were often closely related to moments of transition where these relationships were vulnerable. Examples of continuity and well managed transitions highlighted the importance of professionals personalising transitions and situating them in the context of the daily life of service users. Further research is required to identify how best to negotiate these key points of transition in the future.
The Triangle of Care: Best Practice Guide on Acute Mental Health Care, which promotes the essential three-way relationship between professionals, service users, their carers and families is briefly discussed. The approach was developed by carers and staff who wanted to improve carer engagement in acute inpatient and home treatment services. It emphasises the need for better local strategic involvement of carers and families in the care, planning, and treatment of people experiencing mental ill health and calls for better partnership working between service users, their carers and organisations in order to achieve the best possible outcomes. Adopting the Triangle of Care will ensure the views of carers are heard. The guide offers key principles, resources and examples of best practice to influence services and other people working with carers to be more effective in involving them within acute care and recognises that this will greatly benefit staff, service users and carers themselves.
This study used a representative cross sectional survey to determine the prevalence of abusive behaviours by family carers of people with dementia. Participants were 220 family carers of people newly referred to secondary psychiatric services with dementia who were living at home. Participants were selected from community mental health teams in Essex and London. The main outcome measure used were psychological and physical abuse (revised modified conflict tactics scale). 115 carers reported some abusive behaviour and 74 reported important levels of abuse. Verbal abuse was most commonly reported. Only three carers reported occasional physical abuse. Abusive behaviour by family carers towards people with dementia is common, with a third reporting important levels of abuse and half some abusive behaviour. Results found few cases of physical or frequent abuse, although those with the most abusive behaviour may have been reluctant to report it.
The life of close relatives of persons with bipolar disorder (BD) is associated with emotional distress, depression, and a high level of use of mental health care. Illness-related changes of their life situation endanger relationships, social life, finances, and occupational functioning. Understanding of facilitating conditions for close relatives is still a neglected research area. The aim of the present study thus was to explore what makes the life of close relatives of persons with BD more liveable. A lifeworld phenomenological approach was used. The findings reveal that keeping distance, having stability in everyday life, and strengthening equality through transparent communication are conditions that enable close relatives to influence the unpredictable and its consequences and thus make life more liveable. This implies contributions from close relatives, the person with BD, and the caring services. We propose that health-care support should not be divided in support for the patient and/or the close relatives but instead be designed as support for the ‘patient and close relatives’ as a unit. Professional caregivers need to take responsibility for creating intersubjective settings for the person with BD and their close relatives to share their needs and make joint plans for how to influence the illness-related life issues.
The project was set up to improve the support offered to carers of people with serious mental health problems through supportive and educational group workshops. It aimed to empower carers by improving their understanding of mental health services and care; and to develop a model of carer and mentoring support. From the 15 carers recruited, five left due to personal circumstances leaving a core group of 10. The group also contained a high proportion of black and minority ethnic carers. Although outcomes showed no significant shifts in thinking or change for carers, the workshops did help carers to develop resilience, working with health professionals, and empowering their advocacy role. Carers also valued the opportunity to listen and learn from each other and peer support developed throughout the programme.
Informal carers represent a substantial proportion of the population in many countries and health is an important factor in their capacity to continue care-giving. This study investigated the impact of care-giving on the mental and physical health of informal carers, taking account of contextual factors, including family and work. We examined health changes from before care-giving commenced to 2 and 4 years after, using longitudinal data from the Household Income and Labour Dynamics in Australia survey. The sample comprised 424 carers and 424 propensity score-matched non-carers. Health was self-assessed, measured with the SF-36 Health Survey Mental Health (MH) and Physical Functioning (PF) scales. Care-giving was classified as non-carer, low (<5 hours/week), moderate (5–19 hours/week) and high (20 or more hours/week). PF and MH change scores were regressed on baseline scores, care-giving, covariates (including work, family and socio-demographic characteristics) and interactions to identify impacts for subgroups. The physical and mental health impacts differed by gender, and care-giving hours and carer work hours were important contextual factors. Deterioration in both PF and MH was worse for females after 2 years and deterioration in MH was worse for males after 4 years. Among carers aged 40–64 years, there was a 17-point decline in PF (P = 0.009) and a 14-point decline in MH (P < 0.0001) after 2 years for female high caregivers working full-time and 9.3 point improvement (P = 0.02) for non-working male high caregivers. Change was not significant for non-carers. The study found that not all carers suffer adverse health impacts; however, the combination of high levels of care-giving with workforce participation can increase the risk of negative physical and mental health effects (particularly in female carers). Working carers providing high levels of care represent a vulnerable subgroup where supportive and preventive services might be focused.
Over half of American workers are holding a paid job while also providing unpaid assistance and support to a family member. Research shows that family members who provide care to children or adults with special health care needs are themselves at risk of physical and mental health problems. Yet, little research has explored how the work environment mediates the effects of caregiving on caregivers’ mental and physical health. With a sample of 2455 currently employed U.S. adults from the Work, Family, Community Nexus (WFCN) survey, a random-digit dial, nationally representative survey of Americans aged 18–69, we examine whether paid leave and flexibility policies mediate the relationship between caregiving and health.
In Ordinary Least Squares regression models, we find that paid leave to address family members’ health was associated with better mental health status as measured by the 5-item Mental Health Inventory and paid sick leave with better physical health status as measured by self-rated overall health status. A supportive supervisor was also associated with improvements in mental and physical health. For both men and women, paid leave and a supervisor’s support offset some or all of the negative effects of caregiving, but for women, the buffering effects of working conditions are slightly larger.
Enhancing the unpaid leave guaranteed in the U.S. Family and Medical Leave Act so that it is paid and passing national paid sick days legislation will help ensure that employed caregivers can retain their jobs, receive needed income, and meet their own mental and physical health needs.
Objective: To assess the mental health care system in Germany from the point of view of the federal association of family carers of people with mental illness. Method: Family carer involvement and perspective are discussed on the basis of available literature, questionnaire surveys and documents of carer organizations. Results: At the beginning of the reform movement the views of informal carers were not discussed. Since 1985 family carers have joined forces to express their views on needs of the severely mentally ill and their carers. Their aim is to point out deficits of the care system and to work towards improved care for their relatives with mental illness and changes in the mental health care system. Conclusion: In the reform process informal carers should receive support and be respected as experts and partners.
This study evaluated the association between presence and types of informal caregivers and the presence of depressive symptoms among older adults receiving formal home health care (HHC). A secondary analysis of data was conducted using a computerized patient care database, the Outcome and Assessment Information Set. Logistic regression analyses were used to examine the data of 8448 patients aged 65 years or older who had been admitted to an HHC agency from acute care hospitals between January 1, 2002 and June 30, 2002. The outcome variable was the presence of depressive symptoms. The primary predictor variable was the presence and types of informal caregivers. Covariates included demographic variables, health status, length of time enrolled in formal HHC, patient living arrangements, and the frequency and types of care received from informal caregivers. A lower percentage of older adults receiving care from both informal caregivers and a formal HHC agency (13.3%) had depressive symptoms than older adults receiving only formal HHC (14.9%) at the end of a 60-day episode in formal HHC. Older adults without an informal caregiver were more likely to experience depressive symptoms than those with an informal caregiver after a 60-day episode in HHC (odds ratio = 1.229, 95% confidence interval = 1.027–1.471). There was no significant association between the types of informal caregivers and the presence of depressive symptoms.
Purpose – Around 50 per cent of carers of people with eating disorders (EDs) experience mental health difficulties. The purpose of this paper is to investigate well-being of carers of people with ED and carers of people with severe and enduring eating disorders (SEEDs).
Design/methodology/approach – Carers (n=104) were recruited from UK support groups and stratified using duration of the care recipient’s ED (0-2, 2-6, > 6 years), with the > 6 years category classified as SEED. Data were compared with existing carer well-being studies of other patient groups.
Findings – Carers of people with SEED were not significantly different on reported well-being to carers of people with ED. However, carers of people with ED reported significantly less well-being than community norms, carers of people with brain injury and of people with dementia. Specifically, poorer social functioning was reported.
Research limitations/implications – Further research on carers of people with SEED is warranted as carers of people with SEED were not equally balanced in gender. It would be beneficial if support groups and skill-based workshops were more available for carers.
Originality/value – This is the first known study to compare carer well-being of people with SEED with carers of other clinical populations. Further research is required to identify the needs of carers.
A guide for carers who are concerned that the person they care for is unable to take action or make some or all decisions in relation to their finances, personal welfare or health, due to a mental disability or severe communications difficulties, such as a stroke. The guide covers information on how the Adults with Incapacity (Scotland) Act 2000 can help. It also explains the purpose of guardianship and intervention orders and outlines the considerations to make before taking forward an application for a guardianship or intervention order. The guide also describes how to make an application, the costs involved and what the carer should do once appointed.
On the 1st of April 1999 Somerset Health Authority and Somerset County Council established a Joint Commissioning Board (JCB) to commission mental health services. Simultaneously, the Somerset Partnerships Health and Social Care NHS Trust was set-up as a combined health and social care services provider; for the first time in England, the majority of social services mental health staff transferred their employment to this Trust. The JCB commissioned an evaluation of the impact of these innovations on users and carers, staff and senior officers and members in the organisations concerned. In the course of the research, one concept frequently recurred as a source of both optimism and concern: 'culture'. However, the meanings attributed to this term varied significantly between stakeholders. After summarising the methodology and the results to date of the evaluation, this paper briefly reviews the conceptions of culture in the literature on organisations, and introduces a taxonomy for discussing culture. That taxonomy is then deployed to explore the ways in which the notion of 'culture' is being applied to and within the combined Trust in Somerset, and the implications of those applications for local practice and national policy around partnership.
Background: Many men diagnosed with mental health problems are also fathers. This literature review addresses issues relating to both the fathering role taken on by men who have mental health problems as well as the impact of their mental health on their children. Material: An integrative review of the literature was conducted from studies originating in four countries, resulting in an analysis of 31 journal articles. Discussion and conclusions: Most of the quantitative literature focuses on the many risks and negative outcomes for children. However, qualitative studies suggest positive outcomes such as strong parent-child relationships, which demand further attention both in research and in practice. [Reprinted by permission of Sage Publications Ltd., copyright holder.]
Integrated care pathways (ICPs) are prearranged processes of care that are being increasingly used to deliver mental health services. The literature to date reveals relatively little about service user and carer experience in relation to their use. This study was completed as part of case study research and focused on the experiences of service users and carers gathered using focus groups, as a unit of analysis. The findings revealed a number of contrasts including the perspective that people did not feel that their care was individualized to them, although among them they had different perceptions of the care process. Conclusions suggest that mental health ICPs need to reflect the relationships between stakeholders, variability of illness and individual ways of living if they are to provide a framework for managing care which is responsive to the needs of people using mental health services.
This article is an illustration of Indian families as caregivers who are direct sufferers due to family members affected by mental illness such as schizophrenia, and other psychiatric disorders. The practical aspects involved in the caregiving role of Indian families make them inevitable partners in care besides projecting a unique model to the other family support groups across the world. The discussion on barriers and gateways to the partnerships role of family provides an insight into the cultural dynamics of care in a country like India.
Our purpose in this paper is to report on the frustrations and unmet needs of paid, formal caregivers and unpaid, family caregivers who together provide care to adults with disabilities and/or mental health issues. We conducted eight focus group interviews between November 2010 and June 2011 in two large, urban centres and one smaller centre in Western Canada. Four of our focus groups were with family members including adults with disabilities and/or mental health issues, their parents and their siblings, and four were with representatives from agencies providing support and services to adults with disabilities and/or mental health issues and their families. Data were collected from 23 family members and 24 agency representatives who responded to questions about successes and struggles in meeting, and collaborating to meet, care needs of adults with disabilities and/or mental health issues. Each focus group session was digitally recorded and transcribed; field notes were also taken and we thematically analysed data according to family versus agency perspectives of their successes and barriers in care provision and care collaboration. We found that family members desire greater and more effective support in enriching the lives of adults with disabilities and/or mental health issues and in preparing for age-related changes. Agency representatives are keenly aware of the needs and challenges faced by families, yet grapple with being effective collaborators with families of widely varying priorities and styles of care and collaboration.
This paper reports on some of the findings from a collaborative study funded by the Big Lottery and led by Crossroads Caring for Carers about carers for people with mental health problems. The protection and use of information in mental health are firmly rooted in ethics and professional codes, law and policy, as well as values and professional practice. While government initiatives have attempted to augment the role and rights of carers, policy guidance involving information sharing between professionals and carers has failed to deal with the practical dilemmas of patient confidentiality. Professional codes and training neither explore nor develop the moral and ethical ground that stands between the service user's need for privacy and the carer's need for information. Policy and training guidance on confidentiality is scattered, ambiguous, confusing for professionals and inconsistent. There is uncertainty in practice about the information that professionals may share, and many professionals do not take into account carers’ rights, not least to basic information to help them care for service users. ‘Confidentiality smokescreens’ may sometimes lead to information being withheld from carers. Professionals sometimes find it easier and safer to say nothing. In order to explore these issues from the perspectives of professionals, 65 participants were interviewed. The sample included directors and senior staff from the health, social care and voluntary sectors. Respondents were asked to comment at length on their understanding of confidentiality and information sharing with carers. Findings highlight confidentiality smokescreens that erect barriers that limit effective information sharing; issues involving confidentiality, risk management and carers in crisis; examples of good practice; and the need for the training of professionals on confidentiality issues and the rights of carers. This paper explores the challenge of confidentiality smokescreens from the perspective of professionals, and draws out implications for professional practice and training.
Background : Britain's existing mental health legislation was introduced over 15 years ago. Since then, there has been considerable reorganisation of mental health care services but little research into the use of the Act in routine practice. Modernising Mental Health Services (1998) asserts that mental health legislation will be revised. Aim : The study investigates opinions about the strengths and weaknesses of Parts II and X of the Mental Health Act (1983) of those affected by it. Method : Those affected by the Act were separated into three groups: (1) those directly and commonly involved with the Act (mental health nurses; approved social workers; general psychiatrists; MHA administrators; service users; their carers);(2)those less directly affected (hospital managers; lawyers; general practitioners; policy makers; police surgeons and liaison officers; specialist psychiatrists); (3) organisations representing Groups 1 and 2. A range of qualitative research methods was used to gather data. Views expressed were systematically coded to triangulate findings across the study. Results : Eighty-two individuals participated and nine major issues were generated across study participants. These covered concerns about the appropriateness and effectiveness of existing commitment criteria and procedures, inadequate knowledge and understanding of the Act among professionals as well as patients and carers and the appropriateness of the statutory roles, including the Nearest Relative. Conclusions : The findings provide a valuable insight into views about how existing legislation is applied in practice. These suggest that a review of criteria and procedures for commitment is needed. More effective implementation of legislative policies and the reconfiguration of resources to support them are also needed.
This document summarises responses to the 'Transforming your care: a vision to action' consultation which ran from 9 October 2012 to 15 January 2013. 'Transforming your care' proposes a reshaped model of care with the individual at the centre to improve health and wellbeing of people, adopting a prevention and enabling approach. A total of 2,242 responses were received to the consultation from either organisations or individuals. The report draws the key themes: investment, supporting carers, the role of the workforce in implementing changes, importance of engaging with the voluntary sectors, and the need for improved joint working to address health inequalities. The followng areas are also discussed: population, health and well-being; delivering services at home and in the community; older people's services; long term conditions; palliative and end of life care; mental health; learning disability; physical disability and sensory impairment; family and child care; maternity and child care; and acute care in hospital.
Colin Dugdale, BSc, RMN, RGN, dementia trailblazer, NHS Executive North West. As a community mental health nurse team leader I was seconded to the NHS Executive North West for the role of dementia trailblazer to develop the Admiral Nurse Service in the north-west of England.
This study investigated the relationships between resilience factors (mental health literacy, social connectedness, coping strategies) frequently targeted in interventions, and both adjustment (depressive symptomatology, life satisfaction, prosocial behaviour, emotional/behavioural difficulties) and caregiving outcomes in children (12 - 17 years) of a parent with mental illness. Forty-four participants completed questionnaires. Correlations showed weak support for the predicted beneficial associations of mental health literacy with caregiving and adjustment, stronger support for the beneficial relationships between social connectedness and adjustment, and strong support for the adverse links of disengagement and involuntary coping strategies with adjustment and caregiving. Findings suggest that some resilience factors have a differential impact on adjustment and caregiving, and support the focus of interventions on modifying resilience factors.
Family caregivers are an irreplaceable resource for the mental health services system and the pillars on which the system currently rests. Addressing the needs of these caregivers is therefore crucial for the survival of the system. This paper will present findings from a qualitative study that aimed to explore the experiences and needs of family caregivers who relatives were at various stages of recovery from mental illness. Participants for the study were members of carer support groups as well as non-member caregivers from various regions of Sydney, Australia. The findings highlight the heterogeneity among caregivers, the diversity in their needs, and the difficulties they experience in accessing support from public mental health services.
Cairdeas is operated by Penumbra Respite Care, a major Scottish mental health charity, and offers residential respite care as planned breaks for people with a wide range of mental ill health. It gives them short supported breaks away from their home environment to help them over difficult times and to give carers a break. The service is like a guest house, but has skilled staff working on a 24-hour basis and provides social outings like going to the cinema. Yet, despite having only 8 beds and being able to offer 400 respite weeks a year for the whole of Scotland, Cairdeas is often under-used by local authorities, despite an apparent desperate need among carers of adults with mental health problems. The project director, Be Morris, argues that this is because respite is still seen as an add-on extra, that mental health carers are often hidden, and that these carers are missing out on assessments of their need. Statistics have shown that 40% of carers in Scotland have not had an overnight break in the last 2 years.
Objective: To examine the unmet needs of informal carers of community dwelling disabled people and to compare their perspectives to those of disabled people and nominated professionals. It was hypothesised that a poor recognition of carers’ needs could have implications for carers’ well- being and thus their ability to maintain their caring role. Need was defined as a service or a resource that would confer a health or rehabilitation gain.
Design: Face to face interviews with carers and disabled participants, telephone interviews with professionals (Southern England). Disabled participants had been selected randomly from two disability registers.
Main outcome measures: The Southampton Needs Assessment Questionnaire (carers version), SF-36 (carers’ health status).
Results: Carers experienced similar health status to people in the general population. The most frequently carer-reported unmet needs were for short breaks, domestic help and respite care. Carers who had reported unmet need for short breaks had significantly poorer levels of mental health and vitality (SF-36) than carers who had not reported this. Similar numbers of unmet carers’ needs were reported by disabled participants, professionals and carers themselves. In terms of type of unmet needs, poor concordance between carers and disabled participants occurred in 52% of cases: carers reported more unmet needs than disabled participants for short breaks and domestic help. Poor concordance scores between carers and professionals occurred in 59% of cases: carers reported more unmet needs for short breaks than professionals and professionals reported more unmet needs for formal respite care.
Conclusion: In line with recent legislation, carers’ needs must be independently addressed and services, especially for flexible community support such as short break services, must be developed specifically to meet the needs of carers. Further research is warranted to evaluate whether recent legislation for carers has any effect on carers’ well-being and ability to cope with their caring role.
White paper setting out detailed proposals to establish a new statutory framework to ensure that those with severe mental disorder get care and treatment to meet their needs and, secondly, that the public is protected from those who may, occasionally, pose a threat to their safety. The proposed changes will affect: local and health authorities; service providers in the statutory, independent and voluntary sectors; and people with mental disorders and their carers. Part 1 of the paper, in a separate volume, presents the legal framework, and Part 2, looks at issues involving high risk patients.
This paper reports on a study in two NHS mental health trusts in England in 2008-2009. Data were collected from staff, service users and carers to inform service and workforce developments. The findings were reported relate to service users and carers and concur with staff views. They relate to modernisation of services, the challenges of a multiplicity of stakeholders and organisations, as well as the need to involve users and carers in developments. The findings resonate with national and local policy with a move away from traditional psychiatric care to integrated person-centred community care with a focus on recovery, rehabilitation and self care.
Many carers need an outside interest, and Susan McGrath explains how this is being achieved in a project in East Sussex.
Background: Given that carers of individuals with intellectual disability (ID) and carers of individuals with psychiatric disorders experience elevated levels of stress and psychological distress, carers of individuals with both ID and a comorbid psychiatric disorder are potentially at even greater risk for psychological difficulties. The aim of the present study was to investigate the psychological well-being of carers of adults with a dual diagnosis compared with carers of adults with intellectual disability alone.
Method: Four-hundred and forty-two questionnaires were sent to four community services and seventy-five family carers of adults with intellectual disability responded. Psychological well-being of carers was assessed using the Questionnaire on Resources and Stress – Friedrich edition (QRS-F) and the General Health Questionnaire (GHQ). Comorbid psychopathology for their family member with ID was assessed using the Reiss Screen for Maladaptive Behaviour (RSMB).
Results: Twenty-four percent of the individuals with ID were reported to have comorbid psychopathology. Between-group analyses compared carers of people with ID and comorbid psychopathology to carers of people with ID alone. Regression analyses examined the relationship between psychopathology and other care-related variables to carer stress and psychological distress. Carers of people with ID and comorbid psychopathology were found to have significantly higher levels of stress and psychological distress than carers of people with ID alone. Autism was found to be the only significant predictor of both stress and psychological distress among measures of psychopathology.
Conclusions: Additional comorbid psychopathology in individuals with intellectual disability has a significant impact on their carers’ psychological well-being.
Purpose – A psychometrically validated measure is needed to evaluate outcomes in carers of people with mental health problems, including dementia. This study aims to develop and validate the Carer well‐being and support questionnaire (CWS).
Design/methodology/approach – Development and evaluation of the measure was conducted in three phases. The authors deconstructed an existing questionnaire (CUES‐C) to produce a long version measure. This was trialed with carers to reduce the number of items and a preliminary evaluation of the psychometric properties of the remaining items was undertaken. A second field test was conducted with the item‐reduced questionnaire measure to evaluate acceptability, reliability and validity.
Findings – The CWS well‐being scale shows moderate acceptability and good reliability and validity. The CWS support scale shows moderate acceptability and good reliability; validity testing for the support scale is limited by the lack of appropriate validating measures.
Practical implications – The CWS is a reliable, valid measure of carer well‐being and support, reflecting important aspects of carers' lives.
Originality/value – This paper provides researchers and practitioners with a tool that can be used to measure and address areas of support for carers. This is important in assessing the effectiveness of new interventions and approaches.
Dementia is a term for a range of progressive, terminal organic brain diseases. Dementia affects over 560,000 people in England and costs some £14 billion a year. Parallels can be drawn between attitudes towards dementia now and cancer in the 1950s, when there were few treatments and patients were commonly not told the diagnosis for fear of distress. There are also stigmas associated with mental health and older people's issues, which present barriers to improving awareness, understanding and openness about dementia. Despite its significant human and financial impact, the Department has not given dementia the same priority status as cancer and coronary heart disease. As a result the NHS has not afforded dementia the same focus for improvement. Large numbers of people do not receive a formal diagnosis for a variety of reasons including GPs' lack of knowledge and/or confidence to make a diagnosis, fear of dementia, and a perception amongst the public and professionals that little can be done to help people with dementia.
The purpose of this study is to examine the effectiveness of the interventions for improving mental health of caregivers of people with stroke by synthesizing individual studies. A meta-analysis was performed to summarize findings of intervention studies of caregivers of elderly stroke patients. Additionally, a sensitivity analysis and a publication bias were tested. The overall mean weighted effect size (MWES) for the four studies is 0.277 (Z = 3.432, p = .001) with a 95% CI .118 to .435 (N = 718) indicating that the intervention was effective in improving the mental health of informal stroke caregivers. The MWES for the education program was 0.354 (Z= 2.613, p < .01) and for the support program was .234 (Z = 2.335, p= .02). The MWES for the Europe study was .219 (Z= 2.613, p < .01) and for the United States was .922 (Z = 3.287, p = .001). The results show that overall interventions improved mental health of informal stroke caregivers. The small number of studies included in the meta-analysis limits the generalizability of results while supporting the need for more research in this area.
The aims of this publication are to improve the awareness of co-occurring mental health and substance misuse problems, to improve support and service provision for people who have both mental health and substance misuse problems (and their carers), and to reduce stigma and influence positively attitudes towards this care group.
Background Previous studies have highlighted the effects of informal caring on mental health, but evidence for its wider impact remains scant. We explored associations between informal care and a range of health (and health-related) measures. We also considered previously neglected differences between informal care ‘at home’ and care elsewhere, along with neighbourhood attachment as a possible modifier of the associations we found.
Methods The study involved a large population survey in two Primary Care Trusts. Data were collected by postal survey of 15465 adults; subjects were selected from the local General Practice register. 12.7 per cent of respondents identified themselves as carers. Health measures included psychiatric morbidity, bodily pain, self-assessed health, health-related behaviours, obesity, prescribed drugs and high levels of GP consultation.
Results Of nine measures considered, care at home was associated with psychiatric morbidity (OR 1.46, 95 per cent CI 1.25–1.70), bodily pain (OR 1.19, 95 per cent CI 1.02–1.39), and obesity (OR 1.59, 95 per cent CI 1.34–1.89). Care ‘away’ was associated with smoking (OR 1.26, 95 per cent CI 1.03–1.54), and inversely with both sedentary living (OR 0.70, 95 per cent CI 0.58–0.85) and poor self-assessed health (OR 0.78, 95 per cent CI 0.62–0.99). Health tended to be poorer when carers lacked a sense of neighbourhood attachment.
Conclusions Informal carers are likely to face serious health challenges besides anxiety and depression. Caring is associated with several aspects of poor health, which are themselves predictors of premature mortality. Proactive and wide-ranging support is required, the more so in neighbourhoods where carers feel alienated. Research and policy should distinguish carers ‘at home’ from carers ‘away’.
An evaluation was conducted of voluntary sector family support workers (FSWs) working with families of schizophrenia sufferers. FSWs completed a diary schedule and interviews were conducted with 15 co-professionals from the FSWs' multi-disciplinary teams and 62 carers from FSWs' caseloads. Carers' problems were assessed using the burden component of the Social and Behavioural Assessment Schedule and the Lancashire Quality of Life Profile. Carers were asked about the type of support received and their satisfaction. The findings revealed the considerable pressures of caring and highlighted the value perceived by both carers and coprofessionals of the FSW as a counselling, listening, information and advocacy resource. The diary study revealed that FSWs spend 40% of their time providing emotional and/or practical support. The impact of this was suggested by the superior ratings of quality of life and lower burden scores among carers with whom the FSW had longer-term involvement.
This paper describes the impact that learning about recovery has on mental health carers, exploring the implications of this research for UK social work and beyond. A steering group co-produced a training intervention on recovery that was delivered by the first author and a carer, both with experiences of recovery, to eleven carers. Mainly qualitative data, with supplementary socio-demographic data, were collected to evaluate the impact of this training. Thematic analysis was applied to the data. Findings suggest that being more ‘recovery-aware’ gives carers increased hope and optimism for the future. Awareness of the impact of caring upon the service user's life helps carers to promote recovery in their relative, and gain confidence in their own expertise-by-caring. Professional care is fundamental to recovery but needs to build on a partnership model. The carers evaluated the training as helpful, and valued its authenticity in being led by trainers with experience of recovery. Carers' expectations of professional practice are highlighted, with different approaches discussed that support effective carer involvement in their relative's care. Recognition of carers' expertise-by-caring demands a new approach to mental health care, with significant implications for British social work practice.
Caring for an older adult with dementia at home, is a complex process that creates chronic stress, affecting to a greater or lesser degree the physical and mental health of caregivers, so the evaluation of objective and subjective burden, as well as stressors and ways to tackle them, should not be absent in the Occupational Therapy evaluation, not to mention the family member-caregiver dyad. The preliminary results of the stage of reality immersion, have allowed constituting a sample which initiates the collection of data through in depth interviews and life histories.
Purpose – It is generally agreed that carers in mental health care play a vital role in helping people to maintain their place in the community and reducing the time clients spend in hospital or residential settings. The purpose of this paper is to develop a conceptual approach to involving carers in higher education by acknowledging their contribution to improving practice and identify the impact upon student learning in mental health and social care professions.
Design/methodology/approach – A brief review of the policy and literature on involving carers in mental health services and education explored the historical and current influences upon practice. This was then applied to the experience of the authors when teaching nursing and social work students in a higher educational setting and evaluated as developing outcomes in carer involvement practice.
Findings – Relationships between carers and students in health and social care may be created in higher education settings that can develop supportive, informative and recovery‐focused care in practice. Creating such relationships in the higher educational setting helps students to prepare for developing relationships with carers in practice.
Originality/value – Involving carers in education may improve outcomes in recovery for the client and carer experience and the development of professional and self awareness skills in students. Developing involvement practices in higher education begins the process early in the experience of health and social care students, providing a safe environment in which to master such skills.
Australian mental health policy now clearly articulates that consumer and carer (informal caregiver) participation in all aspects of service delivery is an expectation. As the largest professional group, nurses clearly play a key role in translating policy into practice. The aim of this article is to briefly overview the history of mental health service development in Victoria, with specific emphasis on the development of psychiatric nursing. Changing perspectives of consumers of mental health services and their informal carers is discussed. Policy development is described in the context of the development of mental health services. It is argued that an appreciation of the history of punishment and confinement is necessary for providing a climate conducive to consumer and carer participation.
AIM: This paper reports a study to investigate coping strategies and sense of coherence in relation to gender, the extent of care, caregiving activities and health-related quality of life in a population-based sample of caregivers aged 75 and over.
BACKGROUND: Caring for another person can be stressful both emotionally, and caregiver burden may affect quality of life in a negative way for the carer. Caregivers' experience of burden may depend on for example, the behaviour of the person cared for, their own health and their sense of coherence. Older people take a great part of caregiving responsibility and thus understanding of their strain and coping is required.
METHODS: A postal survey was carried out in 2001 with 171 informal caregivers, aged 75 or older. The response rate was 47%. The questionnaire included the Short-Form 12, Carer's Assessment of Managing Index, and Sense of Coherence instrument.
RESULTS: Almost 70% of caregivers provided help every day. Higher health-related quality of life was predicted by using self-sustaining coping strategies and by high sense of coherence. Poor economic situation and demanding social and practical support predicted low scores.
CONCLUSION: These findings could help identify those at risk of low quality of life due to caregiving, dysfunctional coping or lack of information about care. Early intervention, including education about alternative coping strategies and practical information, might allow caregivers better possibilities to continue caring with less negative effects on their lives.
BACKGROUND: The negative health impacts of prolonged caregiving are widely reported. However, there is a paucity of evidence concerning the impacts of a lifetime of caring on older parents of offspring with learning disabilities.
DESIGN AND METHODS: An exploratory postal survey including the Medical Outcome Study (Short Form) 36 version 2 (SF-36v2) was completed by 100 older parent carers. The reported survey is part of a larger mixed method study including in-depth interviews.
RESULTS: The majority of respondents (n = 91) reported caring for 50 h or more per week with multiple caregiving duties. While the SF-36v2 reported physical health of older parent carers to be similar to UK norms, their mental health was significantly reduced.
IMPLICATIONS FOR PRACTICE: These important findings highlight the vulnerability of ageing parents of offspring with learning disabilities. This previously underreported situation warrants further investigation and urgent attention from health and social care agencies and professionals.
The aim of this study was to illuminate the meaning of parental care-giving with reference to having an adult son or daughter with severe mental illness living in a care setting. The parents were asked to narrate their relationship to offspring in the past, in the present, and their thoughts and feelings concerning the future. The study was guided by a phenomenological hermeneutic perspective. The meaning of parental care was illuminated in the themes 'living with sorrow, anguish and constant worry', 'living with guilt and shame', 'relating with carer/care; comfort and hardships' 'coming to terms with difficulties' and 'hoping for a better life for the adult child'. Parental care-giving emerged as a life-long effort. The narratives revealed ongoing grief, sorrow and losses interpreted as chronic sorrow. The narratives disclosed a cultural conflict between the family system and the care system, which was interpreted as a threat to the parental role, but also experiences of receiving comfort and having confidence in the care given. Experiences of stigma were interpreted from the way of labelling illness, narrated experiences of shame and relations with the public and mental health professionals. Parents' persisting in the care-giving role, striving to look after themselves and expressing hopes for the future were interpreted as a process of coming to terms with difficulties. Results suggest that mental health professionals need to be aware of their own attitudes and treatment of families, improve their cooperation with, and support to families, and provide opportunities for family members to meet one another.
Over the last decade significant developments and debates have highlighted the disadvantages experienced by people who use mental health services.
This report provides a unique insight into how mental health advocacy has failed to reflect and address the specific needs of black and minority ethnic communities. It highlights persistent problems in mainstream services which position black service users on the margins with limited support; examines the reasons for the lack of advocacy development within the black voluntary sector; explores why advocacy is less accessible to black service users; and demonstrates examples of best practice.
The report concludes with recommendations and discusses the need to address a range of key issues such as access, language and communication, funding and implementation.
Purpose – Through consultation with people living with dementia and carers, this paper aims to identify skills that patients and carers feel need to be developed in the workforce. This work is part of a project to develop competencies for the West Midlands dementia workforce.
Design/methodology/approach – People living with a dementia and carers were contacted through cafés, a carers' group and memory group, and two people contributed interviews to the analysis. All materials were analysed qualitatively using thematic analysis.
Findings – Feedback was received from 69 individuals. In total, six major themes were identified: knowledge about dementia, person centred care, communication, relationships, support and helping people engage in activities.
Originality/value – It is argued that people living with dementia and carers bring unique and valuable perspectives to an analysis of the skills of the dementia workforce, which grounds the required skills in the relationship between the worker and the person and family they are working with. This different emphasis needs to be considered and addressed throughout dementia training and education.
BACKGROUND: Although carers' reactions to schizophrenic illness in a close family member may have important implications for the patient and for themselves, little is known of factors that influence the way carers respond. In the area of physical health problems, people's models of their illness or illness representations have been found to be related to the ways they react and cope with their illness. This study examines the use of a modified form of the Illness Perception Questionnaire (IPQ) to investigate illness models in a sample of carers of schizophrenia patients.
METHODS: Forty-seven carers participated. The psychometric properties of the modified IPQ were examined, and a number of carer and patient outcomes were investigated in relation to carer scores on the illness identity, consequences, control-cure and timeline subscales of the modified IPQ. These outcomes included measures of carer distress and burden, expressed emotion dimensions, and patient functioning.
RESULTS: The modified IPQ was found to be a reliable measure of carers' perceptions of schizophrenia. Carer functioning, the patient-carer relationship and patient illness characteristics were associated with different dimensions of illness perceptions.
CONCLUSIONS: The findings support the proposal that carer cognitive representations of the illness may have important implications for both carer and patient outcomes in schizophrenia.
This study examined caregiver perceptions of mental health problems and counseling needs in low-income children with special health care needs (CSHCN). Interviewers collected data from 257 caregivers of CSHCN (61% males; 60% African American; Mean age = 8.4 years) attending six Midwestern inner-city health clinics. Measures included the Child Behavior Checklist (CBCL) and an investigator-designed questionnaire. CBCL T-scores indicated that 38% of CSHCN had a behavioral or mental health problem, but only 26% of caregivers perceived the need for treatment or counseling. CSHCN should be assessed and referred appropriately for behavioral and mental health problems during routine health care visits.
The purpose of this study of mid-life and older women was to assess the relation between informal care provision and depressive symptoms, taking into account concurrent demands on women's time (including multiple caregiving roles and employment outside the home) as well as participants’ access to potentially supportive social ties.
This cross-sectional study included women ages 46–71, free from major disease, who provided complete health and social information in the 1992 Nurses’ Health Study follow-up survey (n=61,383). In logistic regression models predicting depressive symptoms, we examined the interaction between employment outside the home and informal care provision for a disabled or ill spouse or parent. We also investigated level of social ties, measured with the Berkman–Syme Social Network Index, as a potential modifier of the association between informal care provision and depressive symptoms.
In all analyses, higher weekly time commitment to informal care for a spouse or parent was associated with increased risk of depressive symptoms. This relationship persisted whether women were not employed outside the home, were employed full-time, or were employed part-time. Higher weekly time commitment to informal care provision was associated with increased risk of depressive symptoms whether women were socially integrated or socially isolated. However, both informal care provision and social ties were potent independent correlates of depressive symptoms. Therefore, women who reported high spousal care time commitment and few social ties experienced a dramatic elevation in depressive symptoms, compared to women with no spousal care responsibilities and many social ties (OR for depressive symptoms=11.8; 95% CI 4.8, 28.9). We observed the same pattern among socially isolated women who cared for their parent(s) many hours per week, but the association was not as strong (OR for depressive symptoms=6.5; 95% CI 3.4, 12.7). In this cross-sectional study, employment status did not seem to confer additional mental health risk or benefit to informal caregivers, while access to extensive social ties was associated with more favorable caregiver health outcomes.
This report presents the new mental health strategy for Wales, covering people of all ages. It aims to address the needs of people with mental health problems or a mental illness, whilst also improving mental wellbeing. The strategy is intended to improve outcomes for service users, carers and their families. It encourages the "recovery and reablement" approach, which aims to help people live independently and achieve their full potential. The strategy builds upon current policy and incorporates the legal requirements of the ‘Mental Health (Wales) Measure’, as follows: chapter 1 states the intent to promote mental wellbeing and, where possible, prevent mental health problems developing; chapter 2 sets out how a new partnership with the public will be established, encouraging an understanding of mental health and mental illness, seeking to eradicate the stigma which can be associated with mental health; chapter 3 emphasises the value of a well-designed, fully integrated network of care; chapter 4 highlights that a range of factors in people’s lives impact on their mental health and wellbeing. Chapter 5 brings Together for Mental Health to a conclusion with an overview of how we make the vision a reality.
Introduction: Life story work is increasingly being used with people with dementia; this work offers a critical appraisal of some challenges that may be faced in practice.
Design and methods: An in-depth case study analysis was undertaken to understand the experiences of people with dementia, family carers and care staff in using life story work in an NHS Mental Health and Social Care Trust. Data collection included semi-structured interviews, observation, conversations and field notes.
Findings: Private memories were sometimes recalled by the person with dementia that were not for inclusion in any written product; enabling the person with dementia to tell their own life story could be a challenge; quality of the life story books was variable and; at times, life story work may be overused with the person with dementia.
Conclusion: Services should not be deterred from undertaking life story work with people with dementia, but there is a need to adopt a planned approach to its implementation that includes facilitation, education and supervision.
Changes to approaches in dementia care and subsequent services over the last decade have meant that quality of care for people with dementia and their carers has undoubtedly improved. However, few in-depth dementia service evaluation studies are documented. Those that are tend to focus on traditional evaluation measures such as length of stay or functional improvement, or they concentrate on the perspectives of carers. This study used multiple methods within Fourth Generation Methodology to evaluate (SPECAL) Specialized Early Care of Alzheimer's, a dementia care service and approach. The findings demonstrated that, within its approach, there was high quality of care offered by SPECAL to people with dementia and their carers. The evaluation also highlighted some of the difficulties facing SPECAL in its relationships with existing professional providers of mental health care for older people that have implications for other service providers. Recommendations from the evaluation were adopted as an agenda for future developmental work. This study has provoked broader questions for multi-disciplinary and multi-agency teams about quality of services for older people with dementia, and about relationships between the voluntary and statutory sectors.
Carers provide unpaid support to family or friends with physical or mental health problems. This support may be within the domain of activities of daily living, such as personal care, or providing additional emotional support. While research has explored the carer experience within the National Health Service in the United Kingdom, it has not focused specifically on carers of individuals with a diagnosis of borderline personality disorder (BPD). Eight carers for those with a diagnosis of BPD were invited to take part in two focus groups. The first carers’ focus group, entitled ‘The role of Mental Health services,’ produced four super-ordinate themes. The second carers’ focus, entitled ‘Experiences in the Community,’ produced six super-ordinate themes. It seems carers of those with a diagnosis of BPD are continuing to be overlooked by mental health services, and subsequently require more support to ensure their own well-being.
Family carers are a major source of help and assistance to the persons they provide care for. They are also major contributors to the welfare system, balancing the national health care expenditure. Increasing attention, in research as well as government policy, is being paid to their role as informal caregivers. Support to family carers seems to be a new ‘buzzword’ in Swedish Government policy. However, supporting family carers may prove to be a more complex endeavour than one initially might be led to believe. Support could here be understood as any services, assistances, education, information, attitudes, and lay or professional person's provision for the benefit of the family carer. The aim of this systematic review was to identify modes of, and scientific evidence on, support for family carers of cohabiting elderly persons. The method followed a seven-step model: a focused research question was formulated creating a base for deriving search words and inclusion and exclusion criteria for studies. Systematic database searches identified several studies some of which were retrieved, critically appraised and classified by two independent reviewers. A total of 26 articles were finally included, revealing that family carers fear social isolation and wish to network in groups with peers, either for social or for learning needs purposes. Family carers also desire respite care. However, it is unclear whether they actually benefit from any of the above or how service provision should be attempted.
This report argues that intermediate care, a range of services to promote faster recovery from illness, prevent faster recovery from illness, reduce hospital admissions and to maximise independence, is vital to improve the health and well being of older people. The national service framework for older people is a ten year programme of action linking services to support independence and promote good health, specialised services for key conditions, and culture change so that all older people and their carers are always treated with respect, dignity and fairness. The overall aim is to ensure consistent services across the country and reduce variations in standards and service levels.
Background There is a lack of instruments to measure the needs, stigma and informal care of people with schizophrenia that take account of sociocultural variation and patients' and formal and informal carers' opinions and experiences. Aims To develop questionnaires to measure stigma, needs and informal (non-professional) care for people with schizophrenia. Method We undertook the study in seven countries and in English, Spanish and Portuguese. We first held focus group discussions with patients, formal carers (professionals) and informal carers (family and friends) in Spain, the UK, Argentina, Brazil, Chile and Venezuela to elicit the main dimensions of needs, stigma and informal care. We then held nominal group discussions about these dimensions with patients, family members and professionals in Spain, Portugal and the UK, to develop the instruments. Results Three hundred and three people participated in 46 focus groups and results were discussed in three nominal groups, each involving eight participants. Three instruments were developed in this iterative process: needs for care (46 items), stigma (38 items) and informal care (20 items). Conclusions These instruments are based on service users' and carers' views and experiences and have cross-cultural validity. They will have application in assessment of outcomes for people with schizophrenia and their families.
People caring for someone with a mental illness finally have a right both to an assessment and to have their assessed needs met. The author explains how much difference this will make to carers and their loved ones.
This paper is a report of part of a study to investigate the burden experienced by families giving care to a relative with dementia, the consequences of care for the mental health of the primary caregiver and the strategies families use to cope with the care giving stressors. The cost of caring for people with dementia is enormous, both monetary and psychological. Partners, relatives and friends who take care of patients experience emotional, physical and financial stress, and care giving demands are central to decisions on patient institutionalisation. A volunteer sample of 172 caregiver/care recipient dyads participated in the study in Cyprus in 2004-2005. All patients were suffering from probable Alzheimer's type dementia and were recruited from neurology clinics. Data were collected using the Memory and Behaviour Problem Checklist, Burden Interview, Centre for Epidemiological Studies-Depression scale and Ways of Coping Questionnaire. The results showed that 68·02% of caregivers were highly burdened and 65% exhibited depressive symptoms. Burden was related to patient psychopathology and caregiver sex, income and level of education. There was no statistically significant difference in level of burden or depression when patients lived in the community or in institutions. High scores in the burden scale were associated with use of emotional-focused coping strategies, while less burdened relatives used more problem-solving approaches to care-giving demands. Conclusion. Caregivers, especially women, need individualized, specific training in how to understand and manage the behaviour of relatives with dementia and how to cope with their own feelings.
Research on family caregivers usually focuses more on stress and burden, especially in the context of looking after a person with dementia. This leads to fewer considerations of positive aspects of care giving. Thus enhancing these positive aspects represents an innovative approach to caregivers' support. Furthermore, these aspects need more conceptualisation to underpin the development of such an approach. This article proposes a conceptual framework of the positive aspects of care giving based on an integrative literature review. This conceptual framework provides a comprehensive model that should improve understanding of positive aspects of care giving. It could also contribute to the development of innovative support programs based on the positive aspects instead of the negative aspects of care giving.
Aim. This paper is a report of a study to describe situations influencing next-of-kin caregivers’ ability to manage palliative care in the home.
Background. Palliative home care often involves major resources from next-of-kin, municipal and county personnel. Next-of-kin caregivers’ situation is depicted as so demanding and exhausting that it can affect their mental health and limit their ability to continue as a caregiver.
Methods. A qualitative study using the Critical Incident Technique was conducted. Nine next-of-kin caregivers from palliative home care were strategically chosen and data were collected using audiotaped interviews in 2005.
Findings. The analysis resulted in two main areas: ‘Maintaining control’ and ‘Losing control’. Next-of-kin caregivers wanted to maintain control over their lives by being continuously available 24 hours a day and by supporting and taking complete responsibility for all of the patient’s needs. They lost this control when professional assistance was lacking and they described feelings of inadequacy when their physical energy or time was insufficient. They felt incapable as the patient’s physical or mental persona metamorphosed or as serious symptoms developed that they could not control.
Conclusion. Next-of-kin caregivers and the patients must feel free to choose where palliative home care will be provided and that their choice at any time can be re-evaluated, due to insecurity or workload changes. When planning for palliative care, they should be informed that having only one caregiver reduces the chances of completing palliative care in the home.
Purpose: To classify and identify the main characteristics of the tools used in practice to assess the impact of elderly caregiving on the informal carers' life. Methods A systematic review of literature was performed searching in Embase, MEDLINE, PsycINFO, CINAHL, IBECS, LILACS, SiiS, SSCI and Cochrane Library from 2009 to 2013 in English, Spanish, Portuguese and French, and in reference lists of included papers. Results The review included 79 studies, among them several in languages other than English. Their inclusion increased the variety of identified tools to measure this impact (n = 93) and allowed a wider analysis of their geographical use. While confirming their overlapping nature, instruments were classified according to the degree of integration of dimensions they evaluated and their specificity to the caregiving process: caregiver burden (n = 20), quality of life and well-being (n = 11), management and coping (n = 21), emotional and mental health (n = 29), psychosocial impact (n = 10), physical health and healthy habits (n = 2), and other measures. A high use in practice of tools not validated yet and not caregiver-specific was identified. Conclusions: The great variety and characteristics of instruments identified in this review confirm the complexity and multidimensionality of the effects of elderly caregiving on the informal carer’s life and explain the difficulties to assess these effects in practice. According to the classification provided, caregiver burden and emotional and mental health are the most evaluated dimensions. However, further work is required to develop integrated and caregiving focused procedures that can appraise this complexity across different countries and cultures.
Social networking technology is making it easier for patients' friends and family to provide support. Tyze a private social platform which has been developed in Canada, is one example. It consists of a shared calender, a messaging system and a 'CareWall' where stories and updates can be posted. Two users of the system are briefly profiled and the benefits they get from the system explained.
Caring for a family member or friend can have major impacts on the personal life and wellbeing of carers. Identifying those who experience poor subjective wellbeing, factors that contribute to this, and ways in which services can be more effectively provided is essential in supporting carers in their role. This study surveyed carers from across New South Wales and found that carers of people with mental health issues reported poorer health and mental health themselves than any other group of carers, despite being more likely to access supportive services. The effectiveness of personal coping strategies employed by mental health carers is also discussed. Survey results raise implications regarding the support of mental health carers and their subjective wellbeing.
Background: Formal recognition and involvement of carers in mental health services has been the focus of recent policy and practice initiatives as well as being supported by carers themselves. However, carers still report feeling marginalised and distanced from services. A prominent theme is that that they are not listened to and their concerns are not taken seriously. Compared to service user views, the reasons underpinning carers’ dissatisfaction with care-planning procedures have been relatively neglected in the research literature, despite the substantial and significant contribution that they make to mental health services. The aim of the study was to explore carers’ experiences of the care planning process for people with severe mental illness.
Methods: Qualitative interviews and focus groups were undertaken with carers. Data were combined and analysed using framework analysis.
Results: Whilst identifying a shared desire for involvement and confirming a potential role for carers within services, our data highlighted that many carers perceive a lack of involvement in care planning and a lack of recognition and appreciation of their role from health professionals. Barriers to involvement included structural barriers, such as the timing and location of meetings, cultural barriers relating to power imbalances within the system and specific barriers relating to confidentiality.
Conclusions: This qualitative study led by a researcher who was a carer herself has developed the understanding of the potential role of carers within the care planning process within mental health services, along with the facilitators and barriers to achieving optimal involvement.
BACKGROUND: Little account has been taken of quality of life (QoL) among family carers of adults with an intellectual disability (ID) and family carers of adults with a mental illness (MI), particularly the female ageing carers' perceived stigma. We explore whether there are differences in the significant predictors of female ageing family carers' QoL between family carers of adults with ID and family carers of adults with MI and aim to examine the effect of these differences in stigma on carer QoL between the two groups.
METHODS: A structural survey interview was administered to 350 female family carers supporting persons with ID and 66 female carers supporting persons with MI; the carers were aged 55 years and older, and the interviews were carried between July 2006 and April 2007 at the carers' homes in a county in Taiwan. The survey package contained standardised scales to measure the carer's stigma, social support, QoL and health as well as adult and carer socio-demographic data.
RESULTS: The results highlight that in both groups the ageing female family carers' health and social support were strongly associated with the level of their QoL even though there was also a strong effect of carers' perceived stigma on their QoL. Contrary to previous findings, ageing female family carers of adults with MI had a higher level of QoL compared with the carers of adults with ID. Hierarchical regressions show a stronger effect of perceived stigma on the carer QoL among the family carers of adults with MI than among the carers of adults with ID.
CONCLUSIONS: This study suggests that attempts to improve these female older family carers' health and social support must include their lifelong unmet needs in terms of how to cope with the perceived stigma associated with their position.
Is it a sign of weakness for a social worker to feel emotional pain when a client dies in tragic circumstances? No, says Mark Sloman
Looks at a support group organized for young carers who have parents with a mental health problem. Highlights of the story of an 11-year old boy who lives with his mother with bipolar mood disorder; Estimated number of young carers who provide care for a parent with mental health problem; Impact of living with mentally ill parent on children.
Purpose – This paper aims to describe the challenges and rewards of service user and carer involvement in clinical psychology training as experienced in one training centre.
Design/methodology/approach – After outlining the major challenges of involvement in higher education and in clinical psychology training, the paper describes the work carried out by the authors. Members of the service user and carer advisory group Salomons Advisory Group of Experts by Experience (SAGE) recount their experiences of working with them in clinical psychology and Increasing Access to Psychological Therapies (IAPT) training. The challenges of inclusion and specific approaches that are used to work with these are explored.
Findings – Members of SAGE have experienced their contributions to the work in positive ways. However, inclusion in this context requires everyone involved to fully acknowledge the social and historical barriers in order to work together to overcome them.
Practical implications – Some of the approaches to meeting the challenges of inclusion in doctoral level clinical training may be applicable in other places.
Social implications – In the authors' experience, true inclusion means openness to the authoritative voices of people not normally viewed as educators. A parallel question is the degree to which professionals feel safe to admit to service user experience or to draw upon other aspects of their personhood while working professionally. This may be crucial for successful partnership.
Originality/value – The authors are still on this journey of inclusion, and hope that by sharing some of their experiences of its complexities that they may help illuminate some elements of others' journeys.
With the increasing number of people living with HIV/AIDS and the escalating costs of health care, there is an increasing demand for informal caregiving in the community. Currently, much emphasis is placed on individuals who are living with HIV/AIDS (in terms of the provision of social, psychological and economic support), but very little attention has been paid to the well-being and quality of life of informal caregivers. Lack of support and care for caregivers may have a negative impact on the quality of care and effective services for individuals living with HIV/AIDS. This paper is based on findings from a qualitative study that explored major sources of stress associated with caregiving among informal caregivers in a village in the southern part of Botswana. The paper suggests that informal caregivers are an integral part of the continuum of care. As a result, they need to be nurtured and supported for the betterment of those both infected and affected by HIV/AIDS. The paper concludes by discussing the implications for further research, policy and programme development.
BACKGROUND: Mental health services are required to take account of the needs of carers, yet little is known about how services affect carers.
AIMS: This paper explores the relationship between the user's mental health problems, the services received and the impact of caring on carers.
METHODS: Sixty-four carers were interviewed, measuring their experiences of care-giving, carer stress and the service user's level of impairment. A robust, composite measure of user severity was derived.
RESULTS: Carers were sometimes better judges than care co-ordinators of user impairment. Their experience reflected the independently rated severity of service users' problems. When carers were aware of care plans, they felt less negative about caring. Even in above-average mental health services, carers lacked information about: care plans, medication and complaints procedures.
CONCLUSIONS: This evidence can be used in allocating resources such respite care, family therapy and CBT to carers. These findings have implications for how mental health services might improve their provision for carers, for instance, involvement in care planning may help carers to cope.
Social Role Valorisation theory, advanced to enhance the lives of disadvantaged groups of people, has addressed community care and lay advocacy for patients and users but has ignored the roles of relatives and carers. [In this article, the term ‘patient’ is used to describe a person who is detained under the Mental Health Act, liable to be detained, or in hospital on an informal basis. The term ‘service user’ describes someone receiving psychiatric services but who is neither hospitalised nor subject to compulsion.] The nearest relative was introduced as a legal category under the Mental Health Act 1959 without a theoretical base, although it was perceived as a safeguard and a way of supporting advocacy for patients. If recent proposals to reform legislation come into force, the role of patient advocacy will be enhanced whilst the nearest relative will be replaced by the new roles of nominated person and carer. This paper reinforces the importance of using governing principles to guide legislation, as supported by the most comprehensive in‐depth research recently conducted into the nearest relative role.
Schools play an important part in the lives of children and young people who have caring responsibilities for a family member with an illness, disability, alcohol or other drug problem or mental health condition but many of these ‘young carers’ report difficulty in attending, achieving and participating in education. This qualitative research project aimed to gather young carers' views about school, the challenges they face in engaging with education and their peers, and ways that the system might better support others like them. It found that significant caring responsibilities, a lack of appropriate and responsive support services to meet family needs and a lack of awareness and understanding within the education system significantly reduced young carers' capacity to fully engage with their learning. Young carers in the study called for more assistance in caring for their relatives, more flexibility and responsiveness to their home lives within the design and delivery of education, and better processes for identifying and responding to the challenges they encounter in participating in the life of the school community.
Reports on research from the Social Policy Research Unit (SPRU) designed to measure and monitor health inequalities between carers and noncarers. The study used data from the British Household Panel Survey (BHPS) covering the period from 1991 to 2000. Results found that emotional and mental health problems are more often associated with caregiving than physical health problems
Outlines a research project undertaken in the Dartford and Gravesham area of north west Kent to explore the service-related needs of Asian older people with dementia and their carers. The study was conducted from February 2002 to January 2004, based at a local dementia care charity, and funded by the Mental Health Foundation. Qualitative approaches were used to collect data about existing services and the views and perceptions of key stakeholders including: 7 GPs, 32 health professionals and service managers, 7 carers and 230 members of the local Asian community.
Background An association between informal caring and increased stress, depression and ill-health has been found previously. Limited data are available on the effect of spousal caring on mental health. This study aimed to determine if informal caring for a spouse was associated with depression or health behaviours in adults aged over 50 in Ireland and whether these effects were influenced by the amount of formal care also received.
Methods We analysed two waves (2009–2011, and 2012–2013) of the Irish Longitudinal Study of Ageing (TILDA), a stratified probability sample prospective cohort of men and women aged over 50, resident in Ireland. A total of 5220 respondents, or 2610 couples, who were married/partnered with both spouses in two waves were included. We used multivariate logistic regression models to determine whether caring for a spouse was associated with depression, adjusting for age, socio-economic variables, disability, and cognition of spouse, social support and health-related behaviours in addition to formal care support. Change scores in depression between waves in spousal carers were calculated with the 20-item Centre for Epidemiological Studies Depression (CES-D) scale, and alcohol problems measured using the CAGE alcohol questionnaire. All analyses were conducted in STATA 12.
Results Overall 2.4% (123 of 5051) of married individuals aged over 50 in Ireland began caring for their spouse since surveyed in 2009–2011, and 0.5% (25) cared for their spouse in both surveys. Beginning to care for a spouse was associated with increased depression in the multivariable model (OR 1.05, 95% CI 1.01–1.09) for women, but not in men. Becoming a spousal carer was also associated with negative health behaviours; carers were more likely to be current smokers (OR 2.06, 95% CI 1.17–3.64) and men to have a problem with alcohol (OR 7.78, 95% CI 3.52–17.2), compared to non-carers. The negative effect of caring on mental health was attenuated by receiving respite care, home help and personal care attendants.
Conclusion Becoming a spousal carer was associated with increased depression in this longitudinal study but this effect was reduced by access to formal care. The impact of caring on depression and behavioural health was differentially moderated by gender, with women having increased depression, and men more likely to have problematic drinking. Further research is needed to clarify mechanisms of resilience and support to increase social inclusion of informal carers and enhance home support through formal care mechanisms to reduce the detrimental health-related risks of care-giving.
Background Many family carers find the support they receive in respect of their child's challenging behaviour unhelpful. This study sought to identify carer perceptions of the ways in which support is unhelpful and how it could be more helpful.
Methods Thirteen mothers, caring for a child with intellectual disability and challenging behaviour, were interviewed. Parental perceptions and concerns regarding support received were investigated. Transcribed interviews were analysed using interpretive phenomenological analysis.
Results Parents reported problems with generic disability services including accessing good services, obtaining relevant information, working relationships with professionals and issues with respite provision. Concerns were also expressed about challenging behaviour-specific provision including ineffective strategies being suggested, an apparent lack of expertise, insufficient input and their child's exclusion from services.
Conclusions More preventative approaches, more widespread adoption of effective behaviour management and improved partnership between professionals and families appear needed. Increasing family support may be ineffective if not accompanied by greater insight into the factors related to effectiveness and recognition of the role of informal support.
The UK Government has highlighted the need to develop appropriate information and support services for informal carers. Previous research that has investigated informal caring has found that managing medication is one aspect of the caring role that presents its own problems; however, these have not been subject to detailed examination. The objective of the present paper was to report the number and type of problems experienced by informal carers when managing medication for older care recipients, and to relate these to measures of coping and health. This was a cross-sectional survey undertaken in one district in each of four randomly selected health authority areas in England. Structured interviews, comprising closed and open questions, with 184 informal carers and 93 associated older care recipients were conducted in participants' own homes. Data were gathered on the number and type of medication-related problems experienced in relation to the informal caring role, and the impact of these from carers' perspectives in terms of coping and health. Sixty-seven per cent of carers reported problems with at least one medication-related activity. Problems were associated with all types of medication-related activities, and experienced by carers providing different levels of care for older people. Four themes were identified from carers' accounts which illustrated a diversity of practical problems and anxieties: maintaining continuous supplies of medication in the home; assisting with administration; making clinical judgements; and communicating with care recipients and health professionals. Carers reporting greater numbers of medication-related problems were more likely to experience higher levels of carer strain (P < 0.001) and poorer mental health status (P < 0.001). The findings of the present study provide insights to inform the development of primary care services to support informal carers in the management of medication for older people.
Research has highlighted the influence of psychosocial factors on the wellbeing of carers of people with dementia. This study aimed to investigate the interrelationships between life events, depression and social support in carers of people with dementia. Participants were 72 carers of people with dementia. They were interviewed using the Bedford College Life Events and Difficulties Schedule and the Geriatric Depression Scale. The results showed that 31 (43%) of carers were depressed. Factors associated with depression in carers were a lack of confiding relationship, depression in the person with dementia, and living with the person with dementia. Carers of people with dementia appear more vulnerable to depression in the context of the caring experience rather than threatening life events.
Young carers of people with mental health problems are highly hidden, ostracised and vulnerable. To make matters worse, many professionals from the social, health and education sectors are not fully aware of the difficulties and central issues facing young carers of people with mental health problems. In order to make young carers of people with mental health problems more visible and to explore gaps in need and good practice from the perspectives of professionals, 65 participants were interviewed. The sample included professionals from the social, healthcare and voluntary sectors. Respondents were asked to discuss their understanding of young carers and appropriate interventions and methods to address young carers’ needs. Findings highlight: young carers’ isolation, stigma and restricted opportunities; fears involving family separation and child protection; and examples of good professional practice. New findings and examples of good professional practice that provide holistic, sensitive and effective support include: young carer groups and forums; young carer days; raising awareness of young carers in schools, especially via technology such as DVDs and the Internet; and having key workers to befriend young carers so as to advocate for better care, to provide emotional and psychological support and to facilitate young carer involvement.
The article presents abstracts of studies about children who are living with and caring for parents with mental health problems, the pespectives of young carers, parents and professionals about child caregivers, and the experiences and needs of children caring for parents with severe and enduring mental illness.
The material on this DVD reflects the views of a multi-ethnic group of carers and community members in Wolverhampton who meet regularly to share their experiences and hope for the future. Some issues for discussion are also suggested in the accompanying leaflet, including access to appropriate services, improving communication and better recognition of the role of carers.
Policy statement from the Scottish Executive on proposals for a new Mental Health Act for Scotland. The paper sets out the framework of the new Act and goes on to look at more specific issues such as: compulsory treatment; rights of users and carers; vulnerable people; the Mental Welfare Commission; offenders with mental health problems; and making the Act work.
Part 3 of a video on carers of people with dementia.The video highlights the different roles a carer plays (or different hats). They need to be compassionate when looking after the physical and mental health needs of the person they are caring for. They also need to be a warrier in order to battle to find out what services and benefits are available.
Purpose: Transitions in caregiving, such as becoming a primary caregiver to grandchildren or having adult children and grandchildren move in or out, may affect the well-being of the grandmother. Design and Methods: This report describes caregiving patterns at 3 time points over 24 months in a sample of 485 Ohio grandmothers and examines the effects of stability and change in grandmother caregiving roles (raising a grandchild, living in a multigenerational home, or not caregiving to grandchildren). Drawing on the Resiliency Model of Family Stress, the study examined caregiving stress and reward, intrafamily strain, social support, resourcefulness, depressive symptoms, mental and physical health, and perceived family functioning. Caregiver group, time of measurement, switching between caregiver groups, and baseline age, race, education, work status, and marital status were considered as independent variables within the context of a one-way treatment structure in a mixed-model multivariate analysis. Results: There were significant caregiver group effects for all variables, except mental health and resourcefulness. Grandmothers raising grandchildren reported the most stress, intrafamily strain, and perceived problems in family functioning, the worst physical health and more depressive symptoms, and the least reward and subjective support. Across groups, there were significant time effects, with worsening physical health and increased stress over time. Switching to higher levels of caregiving was associated with worsening physical health and increases in stress, intrafamily strain, and perceived problems in family functioning. Implications: Recommendations for research and for practice, especially during times of caregiving transition or for grandmothers raising grandchildren, are discussed.
This paper provides a brief overview of the literature on the impact of caring on the mental health of informal caregivers in the areas of aged care, disability and mental health. Factors discussed that may impact on caregivers' mental health include the relationship between the caregiver and care recipient, the nature of the care recipient's disability and the stage of the caregiving process. Several moderators of the impact of caring on mental health are described, including socio-economic factors, social support and coping strategies. This information provides a context within which to examine the type of interventions appropriate to assist caregivers in various situations.
Outlines ongoing research into the way care in mental health is constructed by professionals in law and policy, and the impact of those constructions for people who find themselves identified as 'carer' or 'cared for'. The research also looks at how people construct and experience care within their partnerships.
This guide explains what the Mental Health (Care and Treatment) (Scotland) Act 2003 says about the rights of people who care for a person with a mental disorder. The guide explains the main aim of the principles of the Act is to ensure that service users are treated with respect. It goes on to explain the difference between a carer, named person and an advocate and who the law recognises as a carer.
Opinion Research Services (ORS) was commissioned by Welsh Government in June 2013 to undertake qualitative research to support the Duty to Review the Mental Health (Wales) Measure 2010. 1.2 Information and data were gathered by Welsh Government from a range of sources to inform the Review including this study, regular submissions from health board/local authority services, health board primary care satisfaction surveys and third sector surveys. Welsh Government was responsible for coordinating all inputs to the Review and for final reporting to Welsh Ministers. 1.3 This study by ORS provides qualitative evidence on the views of service users, their carers and practitioners on the implementation of Parts 1 to 4 of the Measure. The findings are presented in four separate reports; one for each part of the Measure and an overall summary report in Welsh and English versions. 1.4 An interim report1 published in 2014 presents the background and methodology for this study in some detail. This report presents findings from qualitative interviews conducted between July 2014 and April 2015 involving participants with direct experience of Part 4 of the Measure.
Original document (pdf) on the Welsh Government website.
As part of an international, multicentered project, the burden of care, health, and subjective well-being experienced by select Australian family carers supporting a relative with disability at home were investigated. Some 448 family carers residing in New South Wales and Tasmania completed a battery of instruments, including a self-report demographic survey, the Family Caregiver Burden Inventory, the General Health Questionnaire, and the Personal Wellbeing Index. Respondents were predominantly females (mean age = 48 years), married, and supporting a son or daughter with an intellectual disability (mean age = 18 years). Although caring for their family member was not perceived to be a burden, respondents reported notable limitations on their social networks and social activities. They reported higher levels of unemployment than would be expected for the general population and were over represented in lower income groups. They reported seriously low levels of mental health and personal well-being when compared with the general population. The findings revealed that this group of family carers were at high risk of social and economic disadvantage and at high risk of mental health challenges. Social policy makers and service providers should take these factors into account, both in the interests of promoting the health and well-being of the carers and considering the long-term needs of family members with disability who rely on family carers for daily support when designing services.
Objective: To evaluate a model of intensive case management for people with dementia based in a community-based mental health service for older people.
Method: Quasi-experimental design. Individuals in one community team setting received case management and were compared with those in a similar team without such a service. Fortythree matched pairs were identified. Eligible older people and their carers were interviewed at uptake and again at 6 and 12 months.
Results: The impact of the scheme upon placement occurred in the second year at the end of which 51% of the experimental group remained at home compared with 33% of the comparison group. For the experimental group significant improvements in the social contacts of older people were noted; a decrease in the stress of their carers was observed, together with a reduction in their input to the care of the client; and there were significant improvements on ratings of overall need reduction, aspects of daily living and level of risk. Differences between the two groups based on service receipt showed higher costs for the experimental group.
Discussion: The benefits to older people and their carers confirms previous findings that the most effective case management interventions are those targeted on a highly specific client group. Issues which influence the cost-effectiveness of intensive case management are discussed. The benefits of locating this service within a specialist mental health team are explored in the context of current initiatives to promote greater service integration between health and social services. Copyright © 2002 John Wiley & Sons, Ltd.
Objective: To gain insight into caregivers' understanding of the causes of behaviours they find problematic in people with Alzheimer's disease in order to inform the development of educational strategies.
Methods: A qualitative, semi-structured interview was used. Participants were 205 caregivers for a person with Alzheimer's disease, all of whom were aware of the diagnosis and who had been recruited as part of a larger longitudinal study. Participants were from inner-city and suburban London/semi-rural Essex. The main outcome measures were caregivers' understanding of: the cause of problematic behaviour; the ability of the person with dementia to control this behaviour; the prognosis of the illness.
Results: Most carers attribute the cognitive, behavioural and psychological symptoms of dementia to causes other than dementia; many believe that the person with dementia has control over their behaviour and substantial numbers believe the person with dementia will return to normal.
Conclusions: This study suggests that providing facts about the illness to caregivers is not enough, as caregivers may not understand that the symptoms they observe are related to the diagnosis. Education by clinicians should focus on the understanding of caregivers and in particular explore the caregivers' attributions of the symptoms which are present in the person for whom they care. Copyright © 2004 John Wiley & Sons, Ltd.
The author, a service user with schizophrenia, discusses how she can utilize her position and produce research that is acceptable, reliable, and credible. She discusses this in relation to a research proposal to examine the role of the carer in the recovery process of people with schizophrenia.
Objectives: To test the hypothesis that family and professional caregivers have different views about what constitutes elder abuse.
Design: A vignette was given to family and professional carers. They were asked to rate 13 management strategies for behavioural difficulties in a person with dementia on a Likert scale ranging from good idea to abusive. Some of the strategies were abusive according to the Department of Health's ‘No Secrets’ definition.
Setting and participants: Family carers were recruited as part of a study of Alzheimer's disease. We recruited professionals working in several clinical disciplines and settings from a mental health service for older people.
Results: Seventy-four family and 38 professional carers completed questionnaires. The only abusive strategy that significantly more professionals than family carers identified correctly was preventing someone moving by putting a table over their lap (33(86.8%) vs 35(47.3%), p < 0.0005). In contrast, significantly more family carers identified that the neglect item of accepting someone was not clean was abusive (21(28.4%) vs 3(7.9%), p = 0.009).
Conclusions: Professionals and carers reported significantly different views from each other and guidelines about what constituted elder abuse. This may be because abuse remains unacknowledged if people feel there are no better management options, and reporting leads only to punitive action for the carer perhaps coupled with institutionalisation for the person with dementia. Successful guidelines require societal agreement about what constitutes abuse and that prevention leads to better outcomes.
Chapter 2 in "Psychiatric Research Trends: Dreams and Geriatric Psychiatry".
Background Many children, adolescents and young people are involved in caring for parents, siblings, or other relatives who have an illness, disability, mental health problem or other need for care or supervision. The aim was to develop two new instruments for use in research with young carers to assess caring activities and their psychological effects.
Method Two studies are reported. In study 1, 410 young carers were recruited via The Princess Royal Trust for Carers database of UK projects and asked to complete an initial item pool of 42 and 75 questionnaire items to assess caring activities and caring outcomes respectively. In study 2 a further 124 young carers were recruited.
Results Following exploratory principal components analysis in study 1, 18 items were chosen to compose the Multidimensional Assessment of Caring Activities Checklist (MACA-YC18), and 20 items chosen to compose the Positive and Negative Outcomes of Caring Scales (PANOC-YC20). In study 2, normative and convergent validity data on the two instruments are reported.
Conclusion The MACA-YC18 is an 18-item self-report measure that can be used to provide an index of the total amount of caring activity undertaken by the young person, as well as six sub-scale scores for domestic tasks, household management, personal care, emotional care, sibling care and financial/practical care. The PANOC-YC20 is a 20-item self-report measure that can be used to provide an index of positive and negative outcomes of caring.
In a cross-sectional survey, the authors assessed the attitudes of older patients and their carers towards receiving copies of letters about them and the effects upon outcomes of sharing letters. They also studied the opinions of consultants on letter-sharing. The results were few old age psychiatrists shared letters with patients or carers, and many had concerns about this practice. In contrast, letters were considered 'very welcome' by 87% of patients and carers who received them, and 81% of those who did not would be 'very pleased' to receive them. Patients and carers who had received letters had significantly better knowledge of their care plan, whom to contact and ways of making contact with services. The clinical implications were despite concerns expressed by psychiatrists, the authors findings support the sharing of letters with patients and carers of patients with dementia in old age psychiatry services.
Objective To assess whether the START (STrAtegies for RelatTives) intervention added to treatment as usual is cost effective compared with usual treatment alone. Design Cost effectiveness analysis nested within a pragmatic randomised controlled trial. Setting Three mental health and one neurological outpatient dementia service in London and Essex, UK. Participants Family carers of people with dementia. Intervention Eight session, manual based, coping intervention delivered by supervised psychology graduates to family carers of people with dementia added to usual treatment, compared with usual treatment alone. Primary outcome measures Costs measured from a health and social care perspective were analysed alongside the Hospital Anxiety and Depression Scale total score (HADS-T) of affective symptoms and quality adjusted life years (QALYs) in cost effectiveness analyses over eight months from baseline. Results Of the 260 participants recruited to the study, 173 were randomised to the START intervention, and 87 to usual treatment alone. Mean HADS-T scores were lower in the intervention group than the usual treatment group over the 8 month evaluation period (mean difference −1.79 (95% CI −3.32 to −0.33)), indicating better outcomes associated with the START intervention. There was a small improvement in health related quality of life as measured by QALYs (0.03 (−0.01 to 0.08)). Costs were no different between the intervention and usual treatment groups (£252 (−28 to 565) higher for START group). The cost effectiveness calculations suggested that START had a greater than 99% chance of being cost effective compared with usual treatment alone at a willingness to pay threshold of £30 000 per QALY gained, and a high probability of cost effectiveness on the HADS-T measure. Conclusions The manual based coping intervention START, when added to treatment as usual, was cost effective compared with treatment as usual alone by reference to both outcome measures (affective symptoms for family carers, and carer based QALYs).
Trial Registration ISCTRN 70017938
The term ‘young carer’ refers to those youth under the age of 25 years who provide substantial unpaid support to a family member due to factors including, but not limited to, familial or parental absence, disability, mental health issue(s) or problems with alcohol and/or other drugs. In the UK, national statistics have been integral to tracking the prevalence of young carers while serving as an important tool towards the development of (and justification for) a national legislative framework supporting these youth. In Canada, research and awareness for young carers remains in its infancy and available national datasets have yet to be examined in relation to youths providing unpaid caregiving. As a result, this research provides the first trend analysis of youth-based caregiving in Canada using census data for the 1996–2006 time-period. Methodological limitations of official statistics are also discussed in terms of conceptual and operational constraints limiting the full identification of all those potential young carers.
This study examined the role that faith-based organizations play for caregivers in maintaining the elderly and disabled in their homes. The study explored if persons who use religious beliefs and practices cope with caregiver stress better than those who do not use religious beliefs and practices. The study also explored the role of religious coping as a factor affecting decisions to institutionalize, and the role that faith-based practices and organizations play in helping caregivers maintain the elderly and disabled in their homes.
The study of emotional over-involvement (EOI) has focused primarily on its relationship with patients' course of illness. The authors know little about the predictors and possible consequences of EOI for caregivers. Based on past research, they tested the hypotheses that EOI is associated with worse physical and psychological health among caregivers and examined whether caregiver burden and social support may mediate this relationship. In a sample of 37 Mexican American caregivers and their ill relatives recruited from two outpatient clinics, the authors examined the relationships between EOI, caregiver burden, caregivers' level of social support, and caregivers' health. Additionally, they examined whether caregiver burden and social support may mediate the relationship between EOI and caregivers' health. Cross-sectional analysis indicates that at baseline EOI was not associated with caregiver burden or social support, but was related to worse current health. Longitudinal analysis, however, indicates that EOI at baseline was associated with greater burden, less instrumental support, and worse health among caregivers at follow-up. Moreover, objective burden and instrumental support mediated the relationship between EOI and several health outcomes. Consequently, EOI may be a marker of poor current health status and predicts worse future health among Mexican–American caregiving relatives of individuals with schizophrenia. Moreover, changes in burden and social support associated with EOI appear to mediate the relationship between EOI and several health outcomes among caregivers. These findings suggest that it might be important for family interventions to not only address the functioning of individuals with schizophrenia but also their caregiving relatives.
OBJECTIVE: To quantify time caring, burden and health status in carers of stroke patients after discharge from rehabilitation; to identify the potentially modifiable sociodemographic and clinical characteristics associated with these outcomes. METHODS: Patients and carers prospectively interviewed 6 (n=71) and 12 (n=57) months after discharge. Relationships of carer and patient variables with burden, health status and time analysed by Gaussian and Poisson regression. RESULTS: Carers showed considerable burden at 6 and 12 months. Carers spent 4.6 and 3.6 hours per day assisting patients with daily activities at 6 and 12 months, respectively. Improved patient motor and cognitive function were associated with reductions of up to 20 minutes per day in time spent in daily activities. Better patient mental health and cognitive function were associated with better carer mental health. CONCLUSIONS: Potentially modifiable factors such as these may be able to be targeted by caregiver training, support and education programmes and outpatient therapy for patients.
Longitudinal research on caregiver burden related to mental disorders based on representative samples is scarce. Previous results on the development of burden over time are inconsistent. This article aims to establish whether change in mental disorder status in the index persons predicts subjective burden in their spouses in terms of changed mental health over a period of 11 years. The authors compared change in spousal mental health between four groups from a Norwegian population based sample of 9,144 couples, in which the index persons suffered from mental disorder at the first, second, both, or none of the two measurement times. Mental disorder was defined by a high score on a measure of global mental health combined with self reported impaired functioning due to mental health problems. Spouses of index persons who suffered from mental disorder at the second but not the first measurement time reported moderately impaired mental health, but those spouses with few friends reported a more severe impairment. Spousal mental health in the other groups did not change significantly. Effect sizes were moderate. The findings suggest that spouses of mentally disordered individuals in general experience only moderate levels of burden, and that the transition into a caregiving role is the period in which spouses are vulnerable to negative effects on their mental health. The results point to the treatment of mental health problems in couples as a supplement or alternative to individual treatment.
This study aimed to compare care recipient and caregiver perceptions of quality of life in patients (QoL-p) with Alzheimer's disease (AD) and to identify associated factors, and the concordances-discrepancies. A cross-sectional analytic study of 236 patients and their carers was carried out using the Quality of Life in Alzheimer's Disease (QoL-AD) scale, socio-demographic data and clinical examination. Patients scored the QoL-AD more favourably than did caregivers. Cognitive deterioration did not affect the perception of QoL-AD. The neuropsychiatric symptoms was associated with a negative perception of the QOL-AD in both patients and caregivers. Greater functional autonomy was associated with a better perception of the QOL-AD in patients and even more so in caregivers. In carers, burden and mental health were inversely associated with the QoL-AD. QoL-AD scores of both patients and caregivers were higher for men, married subjects, those who lived with their spouse and those living in their own home. When the carer was a spouse both patients and caregivers scored the QoL-AD higher than when the carer was a son or daughter (35.5 vs 33.4 and 33.7; 32.9 vs 30.5 and 27.7, p < 0.001). Conclusions: Patients have a better perception of QoL-p. Caregivers give a more negative evaluation of neuropsychiatric symptoms, but have a more positive view of functional autonomy. Carers who are spouses have a better perception of QoL-p than do carers who are sons or daughters. Copyright © 2008 John Wiley & Sons, Ltd.
AIM: To evaluate service users' and carers' views on the early intervention in psychosis service in relation to best-practice guidelines. METHOD: Both groups were sent a questionnaire on their experiences of care provided. RESULTS: The majority responded positively to many items, indicating they thought the team met best-practice guidance. Areas where guidelines were most closely adhered to were: helpfulness of initial contact for carers; service users' improved understanding of problems and ability to cope with difficulties; and satisfaction with amount and location of contact among both groups. Areas for further improvement included: promoting awareness and access to early intervention services; service-user involvement with care plans and promoting optimism for carers. CONCLUSION: Raising awareness, early detection of psychosis and accessing help quickly remain the greatest challenges. Establishing a health promotion strategy in all early intervention teams is crucial. Further training may be necessary for [...]
Background: Particularly with ageing populations, dementia and stroke and their resultant disability are worldwide concerns. Much of the support for people with these conditions comes from unpaid carers or caregivers. The carers' role is often challenging and carers themselves may need support. General practice is often the first point of contact for people with these conditions and their carers, making it potentially an important source of support. This systematic review therefore synthesised the available evidence for the impact of supportive interventions for carers provided in general practice. Methods: PRISMA guidelines were adopted and the following databases were searched: MEDLINE; EMBASE; the Cochrane Library; PsycINFO; CINAHL Plus; Applied Social Sciences Index and Abstracts and Healthcare Management Information Consortium. Results: Two thousand four hundred eighty nine results were identified. Four studies, involving 447 carers, fitted the inclusion criteria. Three of these came from the United States of America. None investigated supportive interventions for carers of people with stroke. Primarily by the provision of information and educational materials, the interventions focussed on improving carer mental health, dementia knowledge, caregiving competence and reducing burden, difficulties and frustrations. Overall the evidence suggests that these interventions may improve carer well-being and emotional health but the impact on physical health and social variables was less clear. However, the diversity of the carer outcomes and the measures used means that the findings must be viewed with caution. Conclusions: Unpaid carers pay an essential role in caring for people with stroke and dementia and the dearth of literature investigating the impact of supportive interventions for these carers of is surprising. The available evidence suggests that it may be possible to offer support for these carers in general practice but future research should consider focussing on the same outcome measures in order to allow comparisons across interventions.
A recent study commissioned by the NHS Service Delivery and Organisation research and development programme (SDO) aimed to identify gaps in existing knowledge about the need for services to support mental health carers and what was meant by effectiveness and efficiency in these services. Consultation with key stakeholders was a major part of the study. This article focuses on the main findings of the consultation. Flexibility and responsive were identified as key characteristics of the ideal support service.
This study provides qualitative evidence on the views of service users, their carers and practitioners on the implementation of Part 2 of the Mental Health (Wales) Measure 2010. This part of the Measure requires health boards and local authorities to work in a coordinated way to improve the effectiveness of mental health services. It also requires that care and treatment plans (CTPs) be provided for service users of all ages who have been assessed as requiring care and treatment within secondary mental health services. The report draws upon the focus groups and interviews conducted with service users, their carers and with mental health practitioners. The findings under each of the specific review questions are presented in turn, covering: whether CTPs address the eight areas of life (finance and money, accommodation, personal care and physical well-being, education and training, work and occupation, parenting or caring relationships, social, cultural or spiritual, medical and other forms of treatment including psychological interventions.
Original document (pdf) on the Welsh Government website.
Caregivers of loved ones with chronic illnesses experience an uncontrollable challenge with potentially negative behavioral and medical consequences. Extensive research has demonstrated immune and endocrine regulation can be significantly disrupted by negative behavioral factors based on both animal models and human studies. However, fewer studies have focused on how psychosocial interventions might reverse the negative consequences of stressors such as caregiving. The distress of caring for individuals with cancer has only recently begun to receive attention. These interventions addressing caregiver distress are rare overall and caregivers of patients receiving hematopoietic stem cell transplants (HSCT) have received even less attention. HSCT caregivers report feelings of loss of control. Animal studies suggest that control over aversive events can mitigate the negative consequences of stressors. Caregivers of allogeneic HSCT patients for blood cancers must be available 24/7 for three months or longer following stem cell infusion to closely monitor the recipients’ health and well-being. Does establishing a greater sense of control have positive impacts on caregivers? A randomized control trial of a cognitive behavioral stress management intervention for allogeneic HSCT caregivers is briefly described. A model of caregiver mental health which may potentially impact the patient’s quality of life is proposed. These relationships exist in a complex system that includes genetic influences, sex, social environment, and prior experience. This system fits well within recent formulations of a “complexity science” approach to health and well-being.
Informal care provision is an activity in which individuals are increasingly likely to become involved across their life course, and particularly in later life, as a result of demographic changes such as increasing longevity and changes in co-residential living arrangements in later life. Academic research so far has highlighted the adverse impact of informal care provision on the financial position of the carer, however, the evidence on the impact of informal care provision on the carer's physical, mental and emotional health, and on their mortality, presents a more complex picture. This paper reviews research from the UK and beyond on the provision of informal care and its subsequent impact on health and mortality outcomes. Two key findings emerge from this review paper. Firstly, the cross-sectional analysis of data shows mixed associations between informal care provision and poor health outcomes for the carer. Such research highlights the importance of the demographic and socio-economic characteristics of the carer and the person cared for, and of the specific characteristics and nature of the care provided (e.g. duration, level). Secondly, longitudinal analysis, which typically benefits from a longer timeframe to follow up the impact of caring, shows that although informal care provision is not per se associated with adverse health and mortality outcomes, nevertheless particular types and durations of caring have shown negative outcomes.
The legislation governing the compulsory treatment of certain people who have a mental disorder is the Mental Health Act 1983 (the 1983 Act). The main purpose of this Bill is to amend that Act but it is also being used to introduce "Bournewood safeguards" through amending the Mental Capacity Act 2005 (MCA). These changes are in response to the 2004 European Court of Human Rights judgment (HLvUK) (the "Bournewood judgment") involving an autistic man who was kept at Bournewood Hospital by doctors against the wishes of his carers. The European Court of Human Rights found that admission to and retention in hospital of HL under the common law of necessity amounted to a breach of Article 5(1) ECHR (deprivation of liberty) and of Article 5(4) (right to have lawfulness of detention reviewed by a court).
The article discusses the importance of supporting carers in Great Britain. It states that supporting carers is cost-effective because it prevents crisis intervention, unfitting hospital admission, and delayed transfer of care .It also mentions that if they are not supported, their physical and mental health will be at risk and young carers will have difficulty at school.
Adults with severe and enduring mental health problems are amongst the most marginalised and vulnerable people in our society. In providing care for these individuals, mental health professionals may potentially overlook the fact that many of these people are also parents: • There are an estimated 50,000 – 200,000 young people in the UK caring for a parent with mental health problems. • Many of these young people will provide help and support for a parent. • Some of these young people will be providing care beyond a level that is appropriate for their age. They will be ‘young carers’. • This inappropriate level of care puts young carers’ own physical and mental health at risk. These children and young people may come into contact with a variety of professionals in their daily lives, and some will be known to mental health professionals, but the majority will be unknown either to statutory or voluntary services. Education professionals may come across many of these individuals, but may not recognise them. The young carers may not self-identify as young carers, and may not wish to identify themselves to others. Nevertheless, some degree of intervention is required, since young carers are likely to suff er problems with school, such as: • regular lateness or absence; • difficulty completing assignments on time; • disruptive behaviour; • difficulty developing friendships; • being bullied; and • leaving without any formal qualifications.
Away from formal mental health and education settings, many young carers are able to find help and support in one of the many young carers’ services that operate across the UK. These services may play an important part in providing young carers with an opportunity to fi nd: • respite from care duties; • leisure time activities; • one-to-one support; and • the chance to socialise with peers.
However, many statutory and voluntary services coming into contact with these carers may not feel confi dent in providing advice or support on mental health and mental illness. Hence, MyCare is an investigation of the experiences and needs of young carers aged 9-25 whose parent or parents may suffer from severe mental illness. It is an explorative investigation of the experiences of young carers of parent(s) with severe mental illness, their needs, and how professionals from a variety of disciplines respond to these needs.
This paper reports a survey of 75 organisations commissioning and providing secondary mental health services regarding their policies and practice in respect of payment to mental health services users and informal carers for expenses and their time when participating in the design, development, delivery and monitoring of services. A wide range of statutory and non-statutory organisations was invited to participate. Results indicate that there is a considerable desire to develop practice in this area and that the issue of payments is viewed as important in addressing user and carer participation. Significantly, many organisations employed unwritten policies based on custom and practice and were most likely to relate to basic expenses payments rather than payments for time given. A small number of organisations had developed robust policies and these usually included payment for time as well as expenses payments. Useful areas to address in developing policies were identified, along with barriers and possible solutions to successful implementation of such initiatives.
Woods and forests can enhance the psychological well-being with early stage dementia. In this article, the author reports on initial findings from a pilot programme of activities based in an urban woodland setting for people with early stage dementia. Activities included woodland walks, tree planting, nature photography, fire lighting and woodland cookery. Data were collected through observing the activities and interviewing the people with dementia, carers and staff at the end of the 10-week programme. The findings are briefly reported under the themes of: mental well-being, meaning and identity, nature connections, and social development. The findings illustrate the benefits that can be gained from taking part in woodland activities, for both people with dementia and their carers. The research aims to inform forestry management approaches that are key to achieving Forestry Commission Scotland's and the Scottish Government agenda of improved mental well-being and social inclusion.
The explosion of interest in young people as carers over the last decade and a half conceals the fact that there are still no reliable estimates of the number of young people with caregiving responsibilities. This is even more problematic in circumstances where the 'looked after' person has a mental health problem. In this study, we reflect on what can be done to identify, assess and support young people in these circumstances. We draw on selected findings from a study that has been examining the constituents of good assessment practice in work with family carers supporting relatives with mental health problems. The study embraces different carer groups but this paper concentrates on the experiences of young carers at one study site where Barnardo's and partner organisations had developed a joint initiative targeting young people who are looking after parents and relatives with mental health problems. Following a review of the literature about young people as carers, the paper describes how Barnardo's worked to support them through its young carers projects. Based on face-to-face interviews with the young people (N = 10) caring for a mother with mental health problems, the main part of the paper provides an account of how they talk about, make sense of and evaluate the support they have received through this combined initiative. The findings underscore the value of one particular young carers project, and provide clues about what lessons may be transferable to other similar projects.
Aims and objectives: The purpose of our paper was to explore primary caregivers' experience of the way public mental health nurses and other mental health clinicians responded to them as primary carers of older adults with mental illness.
Background: As populations age, the prevalence of mental illness in older adults will increase and the burden of care placed on family carers will intensify. While family carers are essential to the well-being and quality of life of older adults with mental illness, they frequently experience marginalisation from clinicians.
Design: An interpretative phenomenological analysis approach was used to inform data collection and analysis.
Method: Individual, semistructured, audio-recorded qualitative interviews were conducted with a purposive sample of 30 primary carers.
Results: Two themes were abstracted from the data highlighting carers' contrasting satisfaction with, and delivery of culturally competent care by, clinicians. A third theme, strategies for enhancing carers' experience of care, incorporated carers' suggestions about ways to strengthen their experience of caring.
Conclusion: Although some primary carers had favourable experiences with clinicians, most were dissatisfied and this, in turn, clouded their overall experience of caring.
Relevance to clinical practice: Our findings have implications for the provision of education, ongoing support for, and building the cultural competence of, clinicians about working with carers. They also highlight the need for a change in organisational and practice culture to encompass mutual respect and partnership with carers within the context of the providing person-centred care for carers and older adults with mental illness.
Background Government guidelines promote the use of mainstream mental health services for people with intellectual disabilities whenever possible. However, little is known about the experiences of people with intellectual disabilities who use such services.
Materials and Methods Face-to-face interviews with service users, carers and community nurses were completed and analysed on a case by case basis using interpretative phenomenological analysis. The results were followed up in focus groups with service providers.
Results Positive aspects included the provision of respite, particularly for carers, and good basic care. These were outweighed by a perception of the admission as disempowering and lacking in flexible treatment provision. Accessing help emerged as a major problem, as well as the prospect of staff neglecting the specific needs of people with intellectual disabilities.
Conclusions While there were some indications of improvements in line with recent policies and guidance, mainstream services seem a long way off realizing aims of easy accessibility, person-centred practices and active partnership with intellectual disability services.
This is a revision of the framework first published in 2010, and is a whole system guide that provides information, guidance and signposts in respect of personalisation and personalised services and support for people with mental health needs. The framework is organised in 12 broad sections: person-centred systems and approaches; information and advice. personal motivation and self-help; support for managing personal budgets; support for carers; fair access and equality; creative commissioning; partnership for inclusion; prevention and early intervention; leadership for all; workforce and organisation development; stories and personal accounts; and outcomes and quality framework.. Each section includes practical suggestions of things to put into place to achieve specific goals. Pointers to good practice and sources of advice and information are provided throughout. The framework can be used as a tool to check what needs to be in place for personalisation in mental health.
We examined the relation of social problem-solving abilities to distress experienced by family members assuming a caregiving role for a loved one who had recently incurred a severe physical disability. Family members completed measures of problem-solving, depression and health, while their loved one participated in an inpatient rehabilitation programme. Correlational analyses indicated that a negative problem orientation was significantly predictive of caregiver distress, regardless of the degree of physical impairment of the care recipient. Women reported more distress on several measures than men, and disability severity was also associated with depression and impaired social functioning. Family members with a greater negative orientation may be at risk to develop psychological and health problems upon assuming a caregiver role. These results are discussed in light of theoretical models of social problem-solving, and implications are presented for psychological interventions and for health policy concerning family caregivers and their care recipients.
The changing role of users and carers in the care system is examined. The four main user groups are identified as those with physical disabilities, learning disabilities or mental health problems and older people. The growth of the Disabled Living Movement since the 1970s has radically altered thinking and policy, but changes in practice have been slower. Normalisation theory has dominated service development for those with learning disabilities. Difficulties in implementing a care in the community policy for mental health are discussed. Service rationalisation is identified as a key factor facing older people. Their number and poor organisation in terms of pressure group politics have hampered the development of an ideological focus to service provision. The growing recognition of the value and contribution of carers is considered. The implementation of empowerment and consumerism models to integrate users within the care system is discussed.
Background: Improved life expectancy is resulting in increased outpatient treatment of people with chronic physical health conditions and reliance on the provision of informal care in the community. However, informal care is also associated with increased risk of experiencing common mental health difficulties such as depression and anxiety. Currently there is a lack of evidence-based treatments for such difficulties, resulting in poor health outcomes for both the informal carer and care recipient.
Methods/Design: Electronic databases will be systemically searched for randomised controlled trials examining the effectiveness of psychological interventions targeted at treating depression or anxiety experienced by informal carers of patients with chronic physical health conditions. Database searches will be supplemented by contact with experts, reference and citation checking and grey literature. Both published and unpublished research in English language will be reviewed with no limitations on year or source. Individual, group and patient-carer dyad focused interventions will be eligible. Primary outcomes of interest will be validated self-report or clinician administered measures of depression or anxiety. If data allows a meta-analysis will examine: (1) the overall effectiveness of psychological interventions in relation to outcomes of depression or anxiety; (2) intervention components associated with effectiveness.
Discussion: This review will provide evidence on the effectiveness of psychological interventions for depression and anxiety experienced by informal carers of patients with chronic physical health conditions. In addition, it will examine intervention components associated with effectiveness. Results will inform the design and development of a psychological intervention for carers of people with chronic physical health conditions experiencing depression and anxiety.
PROSPERO registration number: CRD42012003114
This toolkit is intended to complement the report From values to action: The Chief Nursing Officer’s review of mental health nursing. From values to action makes a number of good practice recommendations that apply to nurses working in services for people across the whole age range. Recommendations relate to nursing practice and education and the organisational context in which care is provided. The toolkit is largely for the use of organisations, in consultation with stakeholders – but anyone can use it to reflect on current local nursing-related issues.
Psychosocial interventions have been used for many years in caring for people with mental health problems. The few interventions that have a recognised evidence base are cognitive behavioural therapy (CBT), family interventions, and education programmes for patients and carers. Describes the process of implementing these interventions in a forensic setting and makes recommendations for future practice. Outlines the training provide to staff and the importance of adequate staffing levels.
In the UK, half a million people care for people with severe mental illnesses (Princess Royal Trust for Carers 2002). This article reviews the findings of a study of the views of 13 carers of people self-identified as having schizophrenia on the nature and extent of their role, and its effect on their lives and identities. According to these findings, carers experience stress and illness, and think that the support they receive from professionals is inadequate. As a result, they think that help and psychotherapeutic interventions, such as family therapy, should be more accessible.
This literature review on choice in mental health was commissioned by the Department of Health in July 2005 and submitted to the Department in January 2006. The main part of the review looked at the English language literature on choice in mental health over the past five years. It aimed to identify in particular what tools there are to help people make meaningful choices; what media are effective in facilitating decision-making; and to what extent methods such as advance directives might be used. The review also included a consultation exercise and an overview of how choice is reflected in national policy and guidance in four other countries.
Mental health service users' ability to make choices may be constrained by their own limitations (lack of knowledge, information, capacity), others' shortcomings (lack of appropriate and available services, staff unreceptive to the principle of user choice, restrictive referral processes), and by legal constraints imposed on those who are subject to compulsion under the Mental Health Act 1983. How service users make and communicate their choices also needs to be considered; there may be particular problems for people with learning difficulties, those with some form of mental impairment, those with communication difficulties due to auditory or visual impairment, people who communicate non-verbally, and those for whom English is not their first language. In addition, the choices of carers may be at odds with what service users would choose for themselves.
The purpose of the study was to analyse the assessments of elderly people aged 65 and more about family caregiving as a factor influencing their quality of life and coping. The study is based on the project SUFACARE—‘Supporting family carers and care receivers in Estonia and in Finland’—in the framework of which the Institute of Social Work of Tallinn University carried out postal surveys in 2010. The Estonian survey was conducted in Tallinn and Lääne-Viru County. The total number of respondents was 581 (70% female and 30% male), of whom 98 (n=74 female and n=24 male) were family caregivers. Caregiving has not influenced the physical and mental health of caregivers, the reason being that many people who receive care are not of very ill health or suffer from dementia. People mostly take care of their spouses. Based on the Estonian Family Law Act (RT I 2009, 60, 395), adult descendants are required to provide maintenance if their relatives are not able to care for themselves. Caregivers whose health is below average consider caring to be physically demanding. We cannot speak of the social isolation of respondents who have care duties—they communicate actively and do not feel lonely. Women report caregiving to be physically strenuous more often than men. The mental health of male caregivers is better—fewer male respondents claimed to feel unhappy or depressed compared to female respondents.
White paper setting out detailed proposals to establish a new statutory framework to ensure that those with severe mental disorder get care and treatment to meet their needs and, secondly, that the public is protected from those who may, occasionally, pose a threat to their safety. The proposed changes will affect: local and health authorities; service providers in the statutory, independent and voluntary sectors; and people with mental disorders and their carers. Part 1 of the paper presents the legal framework, and Part 2, in a separate booklet, looks at high risk patients.
NAViGO, a community interest company formed by service users and carers in partnership with mental health workers, has take over the running of all mental health services in northeast Lincolnshire. This article investigates this innovative example of service user and carer involvement in designing and delivering mental health services. The introduction of RESPECT training, which trains mental health workers to defuse difficult situations without using control and restraint techniques, is also discussed.
Based on Spaniol and Jung's stress and coping framework (1993), this study examined the difficulties and stresses experienced by carers with relatives suffering from schizophrenia in Hong Kong. The impact of these difficulties and stresses and of mastery as a coping resource on carers' mental health was also explored. Results show that carers experience most difficulties and stresses related to the management of negative symptoms such as refusal to perform household duties and neglect of personal hygiene, and less to handling positive symptoms such as bizarre behaviours and thoughts. It is also revealed that perceptions of stress associated with difficulties in the care of relatives with schizophrenia accounts for poorer mental health among carers. Lastly, carers with a strong sense of mastery have better mental health. Cultural issues such as 'family shame and face saving', 'family obligations and reciprocal expectations', 'external orientation to personal control' and the 'the Confucian work ethics' are put forward as explanations for these findings. Suggestions on culturally sensitive practices are made.
Young carers are a global phenomenon. The UK estimates it has in excess of 175 000 young carers, the onset of their caring role often occurring between 8 and 10 years of age. Of these, 17 000 are caring for a parent who has severe mental illness, a significant factor for children entering the health and social care system, as up to 60% experience mental health difficulties themselves. This paper reports on the outcome of a participatory project aimed at better understanding the needs of young people. A World Café event was hosted, bringing together those involved in promoting the mental health of young people in a partnership consortium. The event was led by young service users and carers. Important issues raised by the young carers were being excluded from being included; stuck in the here and now, ignoring the future; a hole in the net; and ensuring the hidden is on the agenda. The World Café gave the university the privilege of insight into what local young carers need to improve their mental health, and more importantly, how we can utilize our skills to help them achieve their goals.
The model of assertive outreach is one of the most internationally researched areas of community mental healthcare. An assertive outreach team at a mental health trust developed a handbook on the model, involving contributions from service users, carers, local clinicians and the voluntary sector. This article outlines the process of developing the handbook, and summarises its content and user feedback.
In the UK, there are around 1.5 million carers of people with mental health problems providing substantial amounts of free care. Despite having a legal right to a ‘carer's assessment’, only a minority of mental health carers have had such an assessment. To try and understand why the uptake is so low, we undertook a small (n = 8) qualitative study exploring what mental health staff acting as ‘care co‐ordinators’ thought the barriers to, and facilitators of, carers' assessments might be, and how subsequent practice might be improved.We found that there was some confusion over the definition of ‘carer’ and over who should take responsibility for carer assessments. The main barriers to carers' assessments were the documentation used, the attitudes of staff (especially managers) and the fact that the needs of mental health carers often differed from those caring for people with a physical disability. Practice could be improved through: clarifying the definition of ‘carer’; education and training; redesigning the documentation; dovetailing service user and carer needs assessments; and through offering a wider choice of evidence‐based services as assessment outcomes. Improvements are unlikely to be successful, however, without the active support, expertise and engagement of carers.
Infrequent use of and delayed presentation to professional services have increased the burden of mental illness in minority ethnic communities. Within the growing literature on informal carers, the Chinese remain relatively unstudied. This article reports a qualitative study of 14 carers to explore illness representations of affective disorders in British Chinese communities. Firstly, it places the study within a theoretical framework that permits an understanding of mental health and illness in different sociocultural belief systems. Next, it presents carers' narrative accounts in conceptualising mental illness, including its causes, manifestations and impact on patients and carers, and contextualises the findings within the existing literature. Finally, the article examines how the caring role may be constructed from the broader social experience of carers and their relationships within a community structure that values the group over the individual. Coping mechanisms are discussed in the context of the practice of caring as a moral obligation and of policy implications for more culturally appropriate support services for both Chinese carers and mental health patients.
This study explores the experiences of informal carers of people with mental illness in an Australian mental health service. A qualitative descriptive approach was used with data collected via focus group interviews with a purposive sample of 19 carers. Data analysis revealed two major themes: (a) "Something is not right" and (b) "Now we have a diagnosis." The carers noticed that there was something wrong with their relative before they received a diagnosis but were often hesitant to engage Mental Health services. Carers have trouble understanding if the problems they are witnessing are part of normal development, contemporary culture, or are symptoms of mental illness. Fear of stigma remains a barrier to accessing services and early diagnosis. Findings suggest a need to target support for informal carers in the period prior to and leading to the establishment of a mental health diagnosis.
OBJECTIVE: To provide descriptive information about a short-term educational programme for rural carers of people with a mental illness, living in the Loddon Campaspe Southern Mallee region.
METHOD: The Carers Education Exchange Programme is a flexible, needs-based model that can be modified to cater for individual groups. It consists of a number of sessions on topics relevant to caring for someone with a mental illness, held over a period of several weeks. The programme is offered at locations throughout the region, making it accessible to carers in isolated, rural areas.
RESULTS: Feedback indicates that the benefits of participating in the programme include the reduction of isolation and stigma, increased understanding of mental illness, development of skills relevant to the caring role and the formation of supportive networks, both professional and personal.
CONCLUSIONS: Educational group programmes for carers are an effective way of providing both education and support. This programme can assist in reducing some of the distress and difficulties inherent in caring for someone with a mental illness. Carer well-being is enhanced by the promotion of self-care and a positive outlook.
Caring for patients with various conditions is demanding and stressful and can have a negative impact on both physical and psychological health. This paper reports a systematic review and critical appraisal of the evidence on the effectiveness of mindfulness-based stress reduction for the family caregivers of patients with various conditions. There were improvements in the self-rated psychological symptoms, such as stress, depression, anxiety and mindfulness. To conclude, mindfulness-based stress reduction, as a safe and transportable approach, has potential to improve the psychological symptoms in the caregivers of patients with various conditions.
This document presents a 10-year strategy for improving the lives of people using mental health services, their carers and their families. At the heart of the Strategy is the Mental Health (Wales) Measure 2010, which places legal duties on Health Boards and Local Authorities to improve support for people with mental ill-health. The main themes of Together for Mental Health are: promoting mental wellbeing and, where possible, preventing mental health problems developing; establishing a new partnership with the public, centred on improving information on mental health, increasing service user and carer involvement in decisions around their care and changing attitudes to mental health by tackling stigma and discrimination; delivering a well-designed, fully integrated network of care. This will be based on the recovery and enablement of service users in order to live as fulfilled and independent a life as possible; addressing the range of factors in people’s lives which can affect mental health and wellbeing.
This article looks at one model of how mental health professionals relate to carers and families. It then goes on to consider some research on aspects of the family environment, and the impact that mental illness has on how clients and families relate to one another. Finally it offers suggestions as to how this material might be relevant to our approach to social work in mental health.
Background: Structured psychotherapy is recommended as the preferred treatment of personality disorders. A substantial group of patients, however, has no access to these therapies or does not benefit. For those patients who have no (longer) access to psychotherapy a Collaborative Care Program (CCP) is developed. Collaborative Care originated in somatic health care to increase shared decision making and to enhance self management skills of chronic patients. Nurses have a prominent position in CCP's as they are responsible for optimal continuity and coordination of care. The aim of the CCP is to improve quality of life and self management skills, and reduce destructive behaviour and other manifestations of the personality disorder.
Methods/design: Quantitative and qualitative data are combined in a comparative multiple case study. This makes it possible to test the feasibility of the CCP, and also provides insight into the preliminary outcomes of CCP. Two treatment conditions will be compared, one in which the CCP is provided, the other in which Care as Usual is offered. In both conditions 16 patients will be included. The perspectives of patients, their informal carers and nurses are integrated in this study. Data (questionnaires, documents, and interviews) will be collected among these three groups of participants. The process of treatment and care within both research conditions is described with qualitative research methods. Additional quantitative data provide insight in the preliminary results of the CCP compared to CAU. With a stepped analysis plan the 'black box' of the application of the program will be revealed in order to understand which characteristics and influencing factors are indicative for positive or negative outcomes.
Discussion: The present study is, as to the best of our knowledge, the first to examine Collaborative Care for patients with severe personality disorders receiving outpatient mental health care. With the chosen design we want to examine how and which elements of the CC Program could contribute to a better quality of life for the patients.
Trial registration: Netherlands Trial Register (NTR): NTR2763
This report is based on findings from a large national survey of carers’ views carried out between November 2002 and February 2003. Under Pressure focuses on two principle questions: how has the mechanism introduced to provide carers with a gateway to statutory support, the carers’ assessment, been received?; and what helps carers to support their own health and well being?
Introduction: The study 'Mental healthcare provision for adults with intellectual disability and a mental disorder' (MEMENTA) is a cross-sectional epidemiological study carried out in three different regions of Germany. Its main aim is to assess the prevalence of mental disorders in adults with intellectual disability (ID) as well as quality of mental healthcare for this population.
Methods and analysis: The target population are persons aged between 18 and 65 years with a mild or moderate ID. The study population will be recruited through service providers. A representative sample is realised by two-stage sampling. First, institutions providing services for people with ID (sheltered workshops) are selected in a stratified cluster sampling, with strata being (1) types of service-providing non-governmental organisations and (2) sizes of their sheltered workshops. Then persons working in selected sheltered workshops are selected by simple random sampling. An estimated number of 600 adults with ID will be included. Information will be obtained from the group leaders in the sheltered workshops, informal carers or staff members in sheltered housing institutions and the person with ID. Besides the main outcome parameter of psychiatric symptomatology and problem behaviour, other outcome parameters such as needs for care, quality of life, caregiver burden, health services utilisation and costs for care are assessed using well-established standardised instruments. If a comorbid mental disorder is diagnosed, quality of mental healthcare will be assessed with open questions to all interview partners and, in addition, problem-focused interviews with a small subgroup. Analyses will be carried out using quantitative and qualitative methods.
Ethics and dissemination Approval of all three local ethics committees was obtained. Research findings will add much needed empirical information in order to improve services provided to this vulnerable group of patients.
This article explores the potential impact of the mental health and mental incapacity law reforms on carers. The reform proposals anticipate a number of overlapping and at times conflicting roles for carers (including those of gatekeeper, decision-making proxy and advocate), which is suggestive of an ongoing ambivalence toward the caring role at the level of ethics, policy and strategic planning.
The author had a shock when she visited her mother in India and discovered the realities of caring for a person with mental health problems. Here she describes the difficulties that many carers cope with on a daily basis.
Rationale: This study is an exemplar of mixed method evaluation research for development of a clinical pathway.
Aim: To develop and evaluate an evidence-based, feasible mental health screening and referral clinical pathway for Department of Veterans’ Affairs-funded community nursing care of war veterans and war widows in the Australian context.
Methods: Mixed methods were applied to formulate and clinically evaluate an appropriate pathway. The pathway was applied at urban and rural sites for the nursing care of 97 war veteran and war widow clients. Evaluative data were collected from clients, their informal carers, community nurses, and general practitioners. Chart auditing and pre-post measures were undertaken. Collaboration occurred with an interdisciplinary design team.
Results: The final modified six-page pathway includes use of validated screening tools (Kessler Psychological Distress Scale [K10]) and Alcohol Use Disorder Identification Test, appropriate referral information, directions for support and health-promoting education, and evidence-based guidelines.
Implications for Practice: The clinical pathway is a useful, tested, evidence-based guide for generalist community nurses to identify and suitably respond to common mental healthcare needs of war veterans and war widows. The pathway provides outcomes acceptable to clients and their carers, nurses and doctors.
Conclusions: This study provides an evaluated clinical pathway for generalist community nurses to screen for mental health difficulties, make appropriate referrals as required and to support war veteran and war widow clients. However, the study also shows how research can be used to develop and evaluate practical, evidence-based clinical pathways.
Supervised community treatment, to be introduced under the new Mental Health Act 2007, is intended to help revolving door patients stay out of hospital by requiring them to accept treatment in the community. This article highlights fears that this may increase the burden on carers. Carers will not be involved in the decision behind giving a treatment order and may not understand what support is available to them.
This paper reports findings from a qualitative study concerning the influence of implicit models of mental disorder on shared decision making within community-based mental health teams. One-hundred participants representing five distinct multi-agency groups: psychiatrists, community psychiatric nurses, approved social workers, patients and informal carers operating within Leicestershire, England were interviewed using a standard case vignette describing a person whose behaviour suggests he may have schizophrenia. The results showed that each of the study's multi-agency groups implicitly supports a complex range of model dimensions regarding the nature of schizophrenia, the appropriateness of specific forms of treatment and care, and their respective rights and obligations towards each other. The influence of these implicit model patterns on processes of shared decision making are discussed through evaluating their contribution to our understanding of the power relationships existing between various practitioner groups (including informal carers), and between practitioners and patients during clinical encounters.
The study examined the effect of adult children’s disability on parents’ physical health in later life and the extent to which parents’ symptoms of alcoholism in mid-life moderates the link between children’s disability and later life parental health. Analyses are based on data from the Wisconsin Longitudinal Study. The analytic sample included parents of children with developmental disabilities (n = 145) or mental health problems (n = 200) and 2,432 parents of unaffected children. The results showed that the negative health consequences in later life of having a child with a developmental disability were greater for those who showed more symptoms of alcoholism in mid-life. However, symptoms of alcoholism in mid-life did not significantly moderate the impact of an adult child’s mental health problems on parents’ later life physical health. The findings suggest a potential area where gerontological social workers could intervene, given the negative impact of symptoms of alcoholism on the health of aging parents of children with a disability who may be significantly more susceptible to the negative health impacts of alcohol compared to their younger counterparts.
This study uses focus groups of users, carers, and structured staff interviews to explore the physical health needs of mental health services users and the barriers that make it hard for them to seek or gain access to services. Results found that despite the inextricable link between physical well-being and mental health, professionals in both primary and secondary care fail to view users holistically. Professional role ambiguity and poor communications result in access difficulties for users and add to the burden felt by carers. A focus on reactive interventions to ill-health rather than on health promotion and physical well-being took place in context of paternalism, strict, adherence to the medical paradigm and failure to take users' physical health concerns seriously. Implementation of the National Service Framework (NSF) standards are discussed in the light of these findings.
This paper focuses on scoping studies, an approach to reviewing the literature which to date has received little attention in the research methods literature. We distinguish between different types of scoping studies and indicate where these stand in relation to full systematic reviews. We outline a framework for conducting a scoping study based on our recent experiences of reviewing the literature on services for carers for people with mental health problems. Where appropriate, our approach to scoping the field is contrasted with the procedures followed in systematic reviews. We emphasize how including a consultation exercise in this sort of study may enhance the results, making them more useful to policy makers, practitioners and service users. Finally, the authors consider the advantages and limitations of the approach and suggest that a wider debate is called for about the role of the scoping study in relation to other types of literature reviews.
This article highlights the importance of information‐sharing in mental health care and in particular the difficulties that can follow when practitioners do not perceive lay carers as ‘partners in care’. The findings of a survey, in which views were sought on poor information‐sharing as a barrier to engagement in mental health services, are reported. The authors conclude with a number of recommendations on improving the way information is shared.
In this paper, we present estimates of the effect of informal care provision on female caregivers' health. We use data from the German Socio-Economic Panel and assess effects up to seven years after care provision. The results suggest that there is a considerable negative short-term effect of informal care provision on mental health which fades out over time. Five years after care provision the effect is still negative but smaller and insignificant. Both short- and medium-term effects on physical health are virtually zero throughout. A simulation analysis is used to assess the sensitivity of the results with respect to potential deviations from the conditional independence assumption in the regression adjusted matching approach. [Abstract]
Reports on the development of a joint mental health strategy for older people in a central London Borough. The project brought together clinicians and practitioners from a variety of settings, the voluntary sector, and users and carers. The aim of the project was to develop a shared philosophy of care based on promoting independence and from this to identify the components of a spectrum of care that would meet the wide range of needs of elders with mental ill health. The borough had high levels of deprivation, unemployment and poor housing. In addition there was a rich ethnic diversity within the borough.
This paper reports upon a Welsh Office funded 'clinical effectiveness' project. The project aimed to produce evidence-based practice guidelines for depot neuroleptic medication. An audit was conducted to establish current practice regarding the provision of illness and treatment specific information to out-patients and their informal carers. Sixty-five patients' case-notes, under the care of a single community mental health team were examined for evidence of the type, nature and frequency of information given to patients receiving typical depot neuroleptic medications. Service guidelines were produced and are presented.
BACKGROUND: Although the elevated occurrence of epilepsy in people with intellectual disabilities (ID) is well recognized, the nature of seizures and their association with psychopathology and carer strain are less clearly understood. The aims were to determine the prevalence and features of epilepsy in a community-based population of adults with ID, and to explore whether the presence of epilepsy was associated with greater psychopathology or carer strain.
METHODS: Data were collected on the age, gender, place of residence, adaptive and challenging behaviour, social abilities and psychiatric status of 318 adults from 40 general practices, together with the degree of malaise and strain of family carers. For participants with epilepsy, a nurse collected information on seizures, investigations, treatment and carer concerns by interview. Association between epilepsy and psychiatric morbidity, challenging behaviour and caregiver malaise or strain, was explored by comparing those with epilepsy with a comparison group matched on adaptive behaviour.
RESULTS: Fifty-eight participants (18%) had epilepsy: 26% were seizure free, but 34% had extremely poorly controlled seizures. Earlier onset and seizure frequency were associated with adaptive behaviour. Carer concerns were related to seizure frequency and a history of injury. There were no significant differences in psychopathology, carer malaise or caregiver strain between the matched epilepsy and non-epilepsy groups.
CONCLUSIONS: This study supports the high occurrence and chronicity of epilepsy among people with ID. While psychopathology and carer strain is common within this population, underlying disability-related factors appear to be more important than the presence of epilepsy per se.
Little time may be taken to listen to what carers have to say or explain clinical and service policies. The odd 5 minutes at the end of a busy clinic is not enough; being paraded in front of the ward round is simply unacceptable, but it still happens. A 20-mile trip for family carers just as imprisoned by the patient’s mental illness, geographically and financially, may be impossible. Where is the continuity of care for carers, uncertain of roles within the myriad multidisciplinary teams whose hands the patient may pass through, with no key worker for themselves to turn to in crisis, and who have to tell their story to someone different every time they come to hospital?
The Mental Capacity Act comes into full effect on 1 October 2007. This article aims to provide answers to some of the most frequent voiced questions and misapprehensions from mental health service users, carers, and practitioners about what the Act will mean to them.
Services have been increasingly directed at supporting carers of people living with mental illness but it is difficult to evaluate the impact of service change where benchmarks for carer functioning are sparse. Sixty Australian carers were assessed regarding their quality of life, psychological distress, social isolation and caregiving experience. Their scores were compared with two matched community samples and previous studies. Carers were ten times more likely to be socially isolated and quality of life was significantly less than matched community samples. Over 40 % of the carer sample met criteria for probable psychiatric disorder. Comparison of caregiving experiences with a study 15 years ago showed no improvement in negative caregiving experiences. Carers still face considerable challenges to their wellbeing as they support people living with mental illness, in spite of progress in the development of policy and services.
Background: no longitudinal studies have addressed the effect of late life depression on the physical and mental health status of their informal caregivers.
Objective: to examine whether a diagnosis of depression in older medical inpatients is associated with the physical and mental health status of their informal caregivers after 6 months, independent of the physical health of the care recipient.
Design: longitudinal observational study with 6-month follow-up.
Setting: two Montreal acute-care hospitals.
Subjects: a sample of 97 cognitively intact medical inpatients aged 65 and over and their informal caregivers, with oversampling of patients with a diagnosis of major or minor depression.
Methods: patient data included depression (current diagnosis, duration of current diagnosis, severity of symptoms, and history of depression), physical health (severity of illness, comorbidity, premorbid disability), and cognitive impairment. Caregiver data included relationship to patient, co-residence, and the physical and mental health status subscales of the SF-36. Multivariate linear regression analyses were conducted to determine the relationship between patient depression and caregiver 6 month SF-36 physical and mental scores, adjusting for baseline values, patient comorbidity, disability, and other patient and caregiver variables.
Results: patient characteristics included: mean age 79.3, 62% female, 46% major depression, 18% minor depression, 36% no depression. Caregiver characteristics included: 73% female, 35% co-resident spouse, 15% other co-resident relation, 50% not residing with the patient. Results of the multivariate analyses showed that in comparison with caregivers of patients without a current diagnosis f depressio, caregivers of those with major depression had a lower mental health score at follow-up (−9.54, 95% CI −16.66, −2.43), even though their physical health was slightly better (5.42 95% CI 0.04, 10.81).
Conclusions: a diagnosis of major depression in older medical inpatients is independently associated with poor mental health in their informal caregivers 6 months later.
Objective: Insight into the characteristics of caregivers for whom psychosocial interventions are effective is important for care practice. Until now no systematic reviews were conducted into the effectiveness of psychosocial interventions for caregiver subgroups.
Methods: To gain insight into this relationship between caregiver subgroups and intervention outcomes, a first review study was done. This study reviews the personal characteristics of caregivers of people with dementia for whom psychosocial interventions were effective.
Results: Electronic databases and key articles were searched for reviews on psychosocial interventions for caregivers studies published between January 1990 and February 2008. Based on these reviews, twenty-six studies met the inclusion criteria (i.e. having positive outcomes described in subgroups). Most positive effects were found in caregivers of people with a diagnosis of ‘dementia not otherwise specified’ and in the subgroup of female caregivers. Examples of outcomes were decreased depression and improved self-efficacy.
Conclusions: This study gives a first overview of successful psychosocial interventions in subgroups of caregivers of people with dementia. It makes clear that until now, relatively little research has been done into subgroups of these caregivers. It also suggests that more research is needed to better understand which psychosocial interventions are effective for specific subgroups of caregivers of people with dementia. Copyright © 2011 John Wiley & Sons, Ltd.
Objective. Treatment decisions in life threatening situations (TD) are poorly studied in people with dementia.
Method. The carers of people with dementia were asked four TD questions, pertaining to cardiac resuscitation, intravenous fluids, oral antibiotics and intravenous antibiotics. The impact of key variables (age, dementia severity, psychiatric co-morbidity, physical illness, family relationship of carer) on TD were evaluated.
Results. Fifty carers participated, 46% wanted cardiac resuscitation, 60% wanted treatment with intravenous fluids, 52% wanted treatment with intravenous antibiotics and 60% wanted treatment with oral antibiotics. Agreement between questions was high (76 – 89%), suggesting that relatives were either for or against intervention. There was an association between more severe dementia and a reduced wish for intravenous antibiotics. None of the variables significantly influenced other TD.
Conclusion. The ‘global’ view of carers, was not influenced greatly by key disease variables. There are potential implications for the way in which carers are used as proxy decision makers. Copyright © 2000 John Wiley & Sons, Ltd.
As more people are living longer this growing number of older people means an increase in mental health problems. Twenty-five per cent of people over 85 develop dementia and between ten and sixteen per cent of those over 65 develop clinical depression. In addition, people who developed severe and enduring mental health problems such as schizophrenia when young are now growing older (Audit Commission, 2000). Most people with dementia live in the community. About half are cared for at home by a family carer, usually a spouse or adult child (Keady & Nolan, 1995). The average age of carers is between 60 and 65 years and many are much older (Levin, 1997). Carers of people with dementia are likely to have higher than normal levels of stress and burden and report higher levels of depression (Pearson et al, 1993; Russo et al, 1995). 34 refs. [Introduction]
Background: NHS Direct is a new service that offers 24-hour advice from trained nurses. The National Service Framework for Mental Health and the National Strategy for Carers both mention NHS Direct as an important source of support for people with mental health problems. Aims: This paper reports findings from an evaluation of the Department of Health's NHS Direct mental health initiative. This initiative was established to ensure that NHS Direct can meet the needs of callers with mental health problems by offering additional training to all staff and improving the database of mental health services. Method: The findings reported here are based on routine computer data provided by 12 out of 17 NHS Direct sites, 552 data forms completed by nurse advisers from the 17 sites, and 111 questionnaires administered over the telephone with callers to the 17 sites. Results: Mental health calls accounted for 3% of NHS Direct's workload, although these calls were often longer and more complex than other calls. The majority of callers to the service were in touch with other services for their mental health problems (59%), typically their GP. Most callers had 'moderate' mental health problems, as indicated by the Global Assessment of Functioning Scale. Generally callers were satisfied with the service they received, although satisfaction was lower in some areas than previous studies of NHS Direct. Conclusions: Improvements could be made in the mechanisms for referring callers on to other services, and training to increase nurse advisers' knowledge of mental health problems.
The concept of care has attracted considerable interest and there has been growing attention both to the needs of carers and how they may sometimes conflict with those of service users. Draws on initial research findings to examine experiences of care in mental health for men and women and for carers and users.
Hot Topic series. Comments on the incidence and impact of Alzheimer Disease, focusing on the effect on informal carers and the need for services to be provided to support them and allow patients to lead independent lives. [(BNI unique abstract)] 0 references
A project worker who identified gaps in services for ethnic minority carers of people with mental health difficulties provided the catalyst for Birmingham's Pamela Project, which won a Community Care Award. Anabel Unity Sale reports. [Introduction]
The aim of Rights, Relationships and Recovery is to enhance and develop mental health nursing in Scotland and produce continual improvements in the experiences and outcomes of care of service users, their families and carers. Progress against the Delivery Action Plan is to be measured twice yearly from returns submitted by the various stakeholders. This report is based on the information received from the stakeholders after the first six months of activity. It is the first of a series of annual reports that will summarise the position each year until 2010.
Caring for people with mental health problems can generate a whole range of positive and negative emotions, including fear, disbelief, guilt and chaos as well as a sense of purpose, pride and achievement. This paper explores the emotions of family carers from the perspectives of social, voluntary and healthcare professionals. Sixty-five participants were interviewed, the sample included directors, managers and senior staff from social, voluntary and healthcare organisations. Participants were encouraged to talk in detail about their understanding of the emotions of family carers. Findings highlight a rich understanding of the broad spectrum of carer emotions and the huge emotional adjustments that are often involved. Diagnosis was seen to be imbued with negative emotions, such as fear, anger and denial. However, feelings of hopelessness and desolation were often counterbalanced by feelings of hope, satisfaction and the emotional rewards of caring for a loved one. Participants noted a clear lack of emotional support for family carers, with accompanying feelings of marginalisation, particularly during transitions and especially involving young carers as well as ethnic minorities. By way of contrast, carer support groups were suggested by professionals to be a holistic, effective and economical way of meeting carers’ emotional needs. This paper explores the challenge of family carer emotions from the perspective of managers and practitioners and draws out implications for research, policy and practice.
This study examined the internalization of stigma among carers of people with severe mental health problems experiencing stigma. One hundred and eight Chinese caregivers in Hong Kong were surveyed. Affiliate stigma was found to serve as a partial mediator between face concern and caregiver distress and a full mediator between face concern and subjective burden. Cultural linkage of stigma and caregiver outcomes was identified, suggesting that researchers and practitioners should use a culturally sensitive approach to understand caregivers’ experience and alleviate their stigma.
Background: This study aims to build a measure for assessing and reviewing the living conditions, care and human rights of people with longer term mental health problems in psychiatric and social care institutions. Protection of their human rights is imperative since impaired mental capacity secondary to mental illness can make them vulnerable to abuse and exploitation from others. They also constitute a major resource pressure for mental health services, social services, informal carers and society as a whole.
Methods/Design: domains are identified by collating results from: i) a systematic review of the literature on institutional care for this service user group; ii) a review of the relevant care standards in each participating country; iii) Delphi exercises in partner countries with mental health professionals, service users, carers and advocates. Common domains and cross-cutting themes are agreed by the principal researchers and an international expert panel. Items are developed to assess these domains and incorporated into the toolkit which is designed to be administered through a face to face interview with the institution's manager. The toolkit is refined in response to inter-rater reliability testing, feedback from interviewers and interviewees regarding its utility, and feedback from key stakeholders in each country about its ability to deliver information that can be used within each country's established systems for quality assessment and review. Cross-validation of the toolkit ratings against service users' quality of life, autonomy and markers of recovery tests whether it can deliver a proxy-measure of the service users' experiences of care and the institution's promotion of their human rights and recovery. The ability of the toolkit to assess the "value for money" delivered by institutions is investigated by comparing toolkit ratings and service costs.
Discussion: The study will deliver the first international tool for the assessment of the quality of institutional care for people with longer term mental health problems that is accurate, reliable, informative, useful and easy to use.
This article describes how Thurrock Council Social Services Department and South Essex Mental Health and Community Care NHS Trust launched a joint initiative to develop an integrated service strategy and implementation plan for older people's mental health services in Thurrock. The main principles of the approach were: service user and carer involvement, the active participation of mental health professionals working directly with service users and carers, representatives from all key agencies involved in the planning process.
Specialist mental health services for older people have grown rapidly and successfully over the past two decades, aiming to offer services that are comprehensive, accessible, responsive, individualised, multidisciplinary, accountable, and systematic. As with all mental health problems, the burden falls on primary care (where minor morbidity often goes undetected) and specialist services tend to be reserved for those conditions and patients where diagnosis and management is problematic. The total cost of caring for people with dementia in the United Kingdom is estimated at £6bn ($9bn) a year—a figure whose impact is diluted by the fact that it combines both health and social services. We outline the current evidence of benefit in four areas: services currently available; interventions that have been shown to be effective; rating scales that should be recommended to clinicians for detecting common mental health problems; and the needs of carers.
Standards for crisis response and resolution services to reduce hospital admissions and repeat admissions are presented. The standards cover access and availability, planning and delivering support, promoting equality and respecting diversity, resolution and discharge, service user involvement, supporting and involving carers, training and workforce development, and working with communities.
Original report (pdf) on the Scottish Government website.
Objectives: The aim of the REMiniscence groups for people with dementia and their family CAREgivers (REMCARE) study was to assess the effectiveness and cost-effectiveness of joint reminiscence groups for people with dementia and their family caregivers as compared with usual care.
Design: A multicentre, pragmatic randomised controlled trial with two parallel arms - an intervention group and a usual-care control group - was carried out. A restricted dynamic method of randomisation was used with an overall allocation ratio of 1 : 1, restricted to ensure intervention groups of a viable size. Assessments, blind to treatment allocation, were carried out at baseline, 3 months and 10 months (primary end point).
Setting: Most participants were recruited through NHS Memory Clinics and Community Mental Health Teams for older people. Assessments were usually carried out in the person's home, and treatment groups were held in a variety of community settings.
Participants: A total of 488 individuals (mean age 77.5 years) with mild to moderate dementia (meeting Diagnostic and Statistical Manual of Mental Disorders-Fourth Edition criteria), who were initially living in the community, and who had a relative or other caregiver maintaining regular contact, who could act as an informant and was willing and able to participate in the intervention, were recruited to the study. Most carers were spouses (71%). A total of 350 dyads completed the study.
Interventions: The intervention consisted of joint reminiscence groups held weekly for 12 consecutive weeks, followed by monthly maintenance sessions for a further 7 months. The sessions followed a treatment manual, and were led by two trained facilitators in each centre, supported by a number of volunteers. Up to 12 dyads were invited to attend each group.
Main outcome measures: The primary outcome measures were self-reported quality of life for the person with dementia and psychological distress for the carer [General Health Questionnaire-28 item version (GHQ-28)]. Secondary outcome measures included autobiographical memory and activities of daily living for the person with dementia, carer stress for the carer and mood, relationship quality and service use and costs for both parties.
Results: The intention-to-treat analysis identified no differences in outcome between the intervention and control conditions on primary or secondary outcomes [self-reported quality of life in Alzheimer's disease: mean difference 0.07, standard error (SE) 0.65; F = 0.48; p = 0.53]. Carers of people with dementia allocated to the reminiscence intervention reported a significant increase in anxiety on a subscale of the GHQ-28 at the 10-month end point (mean difference 1.25, SE 0.5; F = 8.28; p = 0.04). Compliance analyses suggested some benefits for people with dementia who attended more reminiscence sessions; however, carers attending more groups showed increased caregiving stress. Use of health- and social-care services was modest, with no significant difference in service use between conditions. Owing to negligible difference in quality-adjusted life-year gains (derived from European Quality of Life-5 Dimensions) between the conditions the planned full economic analysis was curtailed.
Conclusions: This trial does not provide support for the effectiveness or cost-effectiveness of joint reminiscence groups for people with dementia and their carers. Although there may be some beneficial effects for people with dementia who attend sessions as planned, this must be viewed in the context of raised anxiety and stress in their carers. The reasons for these discrepant outcomes need to be explored further, and may necessitate reappraisal of the movement towards joint interventions.
Current Controlled Trials ISRCTN42430123.
The economic and social burden of dementia on society is the value of all the resources used to prevent, diagnose, treat, and generally cope with the illness. This article assess the overall resource implications of dementia in Ireland. Six main areas are covered in the cost analysis as follows: mortality and life years lost, in-patient acute care, in-patient psychiatric care, residential long-stay care, family care, and primary and social care in the community. The critical role of carers in maintaining people with dementia in their own home is reflected in the results showing that family care accounts for almost 50 percent of the overall resource burden, based on an opportunity cost valuation of carer time.
Aims and objectives. This literature review aims to delineate the determinants of perceived burden by informal caregivers and provide insight into the interrelatedness between these determinants.
Background. Despite the attention given to the various determinants of perceived burden, their interrelatedness has not been unravelled. Insight into this interrelatedness is mandatory for the development of successful, complex, multivariate interventions to reduce perceived burden of informal caregivers.
Design. Systematic review.
Method. Four electronic databases, CINAHL, Embase psychiatry, Medline, Psychinfo and reference lists of selected articles, were searched. Publications between January 1985–2008 were included if they concerned mental illness, burden and care giving. Articles were selected according to predefined inclusion and exclusion criteria.
Results. The results of mostly descriptive, cross-sectional and univariate research and the more process-oriented results coming from qualitative burden research are organised in a process orientated conceptual scheme or model adapted from the stress-theoretical framework by Lazarus and Folkman. The model indicates that perceived burden must be understood through the individual appraisal of stressors and the availability and use of internal and external resources. Perceived burden is the outcome of multiple, clinically overlapping psychiatric problems, problematic behaviour and functional disabilities.
Conclusions. So far, intervention programs to reduce perceived burden of informal caregivers have not devoted much attention to the interrelatedness of the origins of burden. The conceptual model provides an overview of the various determinants of perceived burden and a clear picture of the possible interrelatedness appears. This overview of the most important sources of burden helps to develop a complex, multivariate intervention that is comprehensive, long-term, individually tailored and has the flexibility to meet the dynamics of burden over time.
Relevance to clinical practice. Use of the conceptual model is crucial to professional nursing and the quality of support of informal caregivers.
Purpose – This article aims to explore the new challenge posed by the first generations of people with learning disabilities who are now living into older age in significant numbers. Most are living with family carers, who are themselves ageing. This represents a major transition in people's lives and one to which services must respond if a normal life event is not to be turned into a crisis. Though this issue has been acknowledged by government, much more needs to be done to provide people with learning disabilities and their families with the necessary support to enjoy a healthy and active old age.
Design/methodology/approach – This article draws on the work of the authors for over a decade in this field.
Findings – Learning disabled people are likely to experience the age discrimination common in much older people provision and practice and the caring relationship is undermined in the short and long term. Evidence on the extension of personalisation indicates that it presents very considerable challenges for this group of families.
Practical implications – More information is needed on this growing population. More preventative support is needed to sustain the caring relationship while the family is living together, to support families to plan for the future, and to provide support when the caring relationship breaks down.
Originality/value – The article draws together data from the fields of ageing, learning disability and family care to highlight the increasing challenge, which this growing, but neglected, population presents both for policy and practice. It examines the implications for both the older people themselves and for the ageing family carers with whom the majority live and of current government policy in social care and welfare benefits for this very vulnerable group.
This paper summarises findings of a review of research evidence and current service provision of support of carers of people with mental health problems (Arksey et al., 2002). Research consisting of (i) a literature review and (ii) a consultation exercise was carried out between October 2001 and March 2002. The research was commissioned by the National Co-ordinating Centre for NHS Service Delivery and Organisation Research and Development (NCCSDO)
This title looks at the needs of the service user in a care environment and the care which needs to be provided by an establishment and its staff. A better understanding of the needs of service users will improve the care skills of carers as well as satisfaction in their own work.
Designed exclusively for those providing care within the domiciliary setting, this title introduces home carers to the broad range of service user needs that they are likely to support or deliver. In exploring these across a variety of service user groups, including mental health and disability, it aims to establish the importance of recognising difference and individual need and will help develop an understanding of the types of need. These can range from physical & emotional to those of dealing with finances and housing issues. It also introduces the range of differing communication methods and behaviours presented by service users, including confusion and raises awareness of medication and medical conditions. It goes on to consider how to respond to incidences of abuse and loss of life. (DVD)
Statistics on service provision in Scotland to older people, people with learning disabilities, people with mental health problems, disabled people, carers and other users. Provides figures on domiciliary care, day care , residential care, private nursing homes, hospitals and special needs housing for each user group.
A summary of the Community Care, Services for Carers and Children’s Services (Direct Payments) (Wales) Guidance 2011. Sections cover issues such as: developing direct payments services; consent, capacity and ability to manage direct payments; using direct payments; delivery issues, including choice and risk and Criminal Records Bureau checks; providing additional support for people who cannot make their own decisions (such as children and those receiving support under mental health laws); the importance of monitoring and review; and tackling problems such as what to do if money is not being spent properly. The summary makes reference to specific paragraphs of the full guidance throughout. Examples of questions to be answered in a care plan for a person who gets direct payments are included as an annex.
This paper reports on a qualitative study analyzing service-user (SU) and carer perspectives on medication compliance and their experience of compulsory treatment. Eleven SUs and eight carers were interviewed. The research is set against the background of changes to mental health legislation in England, in the form of Supervised Community Treatment. This signals a change in community mental health practice and urges a reconsideration of concepts such as compliance, concordance and coercion. These concepts are discussed in the context of legislative changes and in relation to the perspectives of service-SUs and carers. Five themes emerged from qualitative interview data, analysed using an adapted form of grounded theory: loss of credible identity, playing the game, medicalization, therapeutic competence and incompetence and increased control. The findings suggest that SUs are initially reluctant to comply with mental health treatment, but do eventually accept the need for treatment; they also stress the significance of respectful relationships with professionals and the importance of communicative competence.
Work has been underway for some while to regulate domiciliary care services, where personal care is provided, in Wales following powers provided under section 22 of the Care Standards Act 2000. The Minister for Health and Social Services established a Task and Finish Working Group in August 2002 to provide expert advice on the realities of applying Regulations and National Minimum Standards to domiciliary care agencies in Wales.
See the original and update documents on the Welsh Government website.
Background: There is a need to identify proactive, evidence-based interventions to support informal palliative caregivers. Mindfulness-based interventions, evidenced in the literature as providing physical and mental health benefits for diverse populations, may have application in the setting of palliative caregiving.
Aim: To describe, evaluate and synthesise the peer-reviewed literature on the effects of mindfulness-based interventions for informal palliative caregivers.
Design: A Systematic Literature Review according to the Preferred Reporting Items for Systematic Review and Meta Analyses guidelines and a Narrative synthesis.
Data sources: The Cochrane Library, CINAHL, MEDLINE, PsycINFO and EMBASE databases, searched from inception to February 2014 and references of included studies.
Results: A total of 13 articles, reporting 10 studies (n = 432 participants) were included. All studies were conducted in the last 5 years. Dementia caregivers were the most frequently researched population (n = 7). Results suggest that mindfulness-based interventions are feasible and acceptable to offer to informal palliative caregivers and may provide benefit, particularly in terms of reducing depression and caregiver burden and increasing quality of life. However, effects were not as robust as findings in the wider mindfulness intervention literature.
Conclusion: This is the first systematic literature review on this topic. Results suggest both feasibility and potential benefit. Further qualitative research is required to explore the outcomes identified by informal caregivers themselves as the reduced magnitude of effect may suggest that we are not measuring the right outcomes in this context. This would inform more sensitive outcome measures for future intervention studies and guide the development and application of mindfulness-based models in this area.
Studies have highlighted successful outcomes of psychological therapies for people with intellectual disabilities. However, processes underlying these outcomes are uncertain. Thematic analysis was used to explore the perceptions of three clinical psychologists, six clients and six carers of barriers and facilitators to therapeutic change for people with intellectual disabilities. Six themes were identified relating to: what the client brings as an individual and with regard to their wider system; therapy factors, including the therapeutic relationship and adaptations; psychologists acting as a ‘mental health GP’ to coordinate care; systemic dependency; and the concept of the revolving door in intellectual disability services. The influence of barriers and facilitators to change is complex, with facilitators overcoming barriers and yet simultaneously creating more barriers. Given their potential impact on the psychologists’ roles and access to therapy for people with intellectual disabilities, findings suggest these factors should be formulated as part of the therapeutic process.
AIMS AND METHOD Despite good evidence for their effectiveness in the treatment of schizophrenia, family interventions are difficult to implement. Prior to a local trust-wide programme to encourage their use, we carried out a case note review of family contact with clients and staff of community mental health teams (CMHTs). A 10% sample of CMHT clients was included.
RESULTS The majority (81%) of clients had been in contact with family or carers in the preceding year. In 88% of case files the carers were relatives. In 37% of cases care coordinators were in recent contact with carers, primarily by telephone. Evidence of any family intervention was recorded in 5% of case files and carers’assessments in 7%.
CLINICAL IMPLICATIONS The majority of CMHT clients have some form of contact with their families, and care coordinators make informal links with these families. This contact could be reframed to encourage more formal family interventions.
Purpose: Our aim was to investigate associations between the subjective burden of care and health-related quality of life (both physical and mental) within colorectal cancer patient carers in Ireland, with supplementary analysis of carer objective factors.
Methods: Two hundred twenty-eight colorectal cancer informal carers were sent a postal questionnaire between August 2010 and March 2011 which included the Caregiver Reaction Assessment (CRA) and the SF-12v2. Multiple regression analysis assessed whether five CRA domains (family support, finances, schedule, health and esteem) predicted carer mental or physical health. Between-group comparisons investigated differences in these domains across objective factors.
Results: One hundred fifty-three carers (82 % female) completed the questionnaire (response rate = 68 %). Carers’ mean physical component summary (PCS) was 48.56 (SD = 10.38) and mean mental component summary (MCS) was 49.22 (SD = 9.7). Five CRA factors explained 30 % of variance in the PCS score and 28 % of variance in the MCS score. Health burden (β = −.76, p < .001) and schedule burden (β = .28, p = .01) were significant predictors of PCS. MCS was significantly predicated by financial burden (β = −.24, p = .01) and esteem (β = −.18, p = .03). Younger carers, spouses, those with a comorbid condition and those with no income change had significantly lower PCS. There were no statistically significant group differences for carer mental health.
Conclusions: Our results demonstrate the need to recognise the distinctive aspects of the impact of caring (i.e., physical and mental) on carers and that different domains of subjective carer burden and objective factors impact differently on each of these. This has important implications for those delivering support to carers over the course of the survivorship continuum.
Argues why the nearest relative role has important lessons for the roles of the nominated person and carer which will replace it in the next Mental Health Act.
An easy read guide to the mental health act, a new law which says how you can be treated if you have a mental disorder, and also says what your rights are, is presented.
There has been little work on the ethical issues facing non-professionals who care for relatives or others with dementia. A qualitative pilot study was conducted in ten such individuals, eight of them women, caring for persons drawn mainly from one general practice. The interviews indicated that many of the dilemmas faced by carers are ethical and that the issues differ from those faced by professionals. Ethical issues are sometimes the most troublesome matter for carers. Unlike issues for professionals, they arise from a personal context and are shaped by long-term relationships.
Together for Mental Health sets out the Welsh Government's ambitions for improving mental health and vision for improved mental health service delivery. Developed through engagement and formal consultation with key partner agencies, stakeholders, service users and carers, it covers people of all ages and emphasises the need to promote better mental health and wellbeing among the whole population. It focuses on how to improve the lives of service users and their families using a recovery and enablement approach. It identifies 6 high level outcomes that the strategy hopes to achieve, and sets out how the outcomes will be delivered. It is supported by a Delivery Plan. A new Mental Health Partnership Board is being established to oversee delivery.
Objective: To estimate service demand (willingness to seek or use services) for respite care among informal, primary carers of people with a psychological disability and to describe their characteristics. Methods: Analysis of data from the household component of the 2009 Survey of Disability Ageing and Carers (n=64,213 persons). Results: In Australia in 2009, 1.0% of people aged 15 years or over (177,900 persons) provided informal, primary care to a co-resident with a psychological disability. One-quarter (27.2%) of these carers reported service demand for respite care, of whom one-third had used respite services in the past three months and four-fifths had an unmet need for any or more respite care. A significantly greater percentages of carers with service demand for respite care spent 40 or more hours per week on caregiving, provided care to a person with profound activity restrictions and reported unmet support needs, compared to carers without service demand. Lack of suitable, available respite care models was a barrier to utilisation. Conclusions: Findings confirm significant service demand for, and under-utilisation of, respite care among mental health carers. Implications: Increased coverage of respite services, more flexible service delivery models matched to carers’ needs and better integration with other support services are indicated.
Informal care is a fundamental component of care in the community which, given current demographic trends and increasing prevalence of debilitating chronic disease, is likely to assume even greater significance in future. Research indicates that caregivers are more likely than non-carers to report poor health, though this has usually been measured in terms of psychological or emotional health such as depression or ‘caregiver strain’. Relatively little is known about the effects of caring on physical health. This study examines the health of caregivers recorded in the 2001 Northern Ireland Census and their subsequent mortality over the following four years. Caregivers were a heterogeneous group, with those providing fewer hours of care being relatively more affluent than those providing care at greater intensities. Overall, caregivers had lower mortality risks than non-carers and effects were more pronounced for women, older people, and for those reporting poorer health at the start of the study period. While this study does not exclude the possibility of significant detrimental health effects of caring for some sub-groups of caregivers, it does add support to the growing body of literature which suggests that the positive aspects of caring have been underreported.
Although there has been a shift toward treatment in the home and the community, in the UK, inpatient facilities are still important in modern mental health care. ‘Informal carers’, including family members, often play an essential role, not only in providing care in the community but also in care of patients during periods of hospitalisation. UK National Health Service policies increasingly consider the position of these carers as ‘partners’ in the care process, but relatively little attention has been paid to their position within the hospital settings where treatment is provided for inpatients. This paper contributes to geographical work on carers experiences, by reporting how this issue emerged through a study focused on perceptions of a newly built hospital, compared with the inpatient facilities it replaced. We draw on qualitative research findings from discussion groups and interviews with informal carers. The material considered here focused especially on carers' views of aspects of the hospital environment that were important for wellbeing of carers and the people they look after. The carers' views were supplemented by relevant material drawn from other interviews from our wider study, which included service users and members of hospital staff. These accounts revealed how informal carers experienced the hospital environment; we interpret our findings through a conceptual framework that emphasises carers' experiences of a ‘journey’ along a ‘caring pathway’ to and through the hospital space. This perspective allows us to make a connection between three bodies of literature. The first relates to phenomenological interpretations of one's environmental perception, formed as one moves through the world. The second derives from the literature concerning ‘permeability’ of hospital institutions. Bringing these ideas together provides an innovative, dynamic perspective on a third strand of literature from health geography that examines hospitals as ‘therapeutic landscapes’. The analysis helps to explore the extent to which carers in this study were positioned as ‘outsiders’ in the hospital space.
The Care Services Improvement Partnership (CSIP) has developed draft guidance for consultation on ‘Finding a shared vision of how people’s mental health problems should be understood’. The guidance is aimed at everyone concerned with the development and delivery of services including people that use services and their carers.
Aim. To explore first-time primary caregivers’ experience of the way mental health nurses and other mental health clinicians respond to them as carers of young people with first-episode psychosis.
Background. Caregivers have a key role in supporting family members/relatives with mental illness, but their contribution is undervalued frequently by mental health nurses and other mental health clinicians.
Design. Qualitative interpretative phenomenological analysis.
Method. A qualitative interpretative design was undertaken, using semi-structured, audio-recorded interviews. Twenty primary caregivers were recruited through Orygen Youth Health, a first-episode psychosis centre in Melbourne. Interpretative phenomenological analysis was used to identify themes in the data.
Results. Two competing themes were identified in the data, highlighting caregivers’ contrasting experience with mental health nurses and other mental health clinicians. First, most clinical staff were approachable and supportive. Second, several carers felt their contribution was undervalued by some clinical staff. This was as a consequence of being excluded from clinical deliberations because of clinical staffs’ concerns and young people’s requests about maintaining confidentiality regarding treatment, as well as carers feeling their role was not taken seriously by clinical staff.
Conclusion. First-time primary carers have positive and negative experiences with first-episode psychosis mental health nurses and other clinicians, and these competing events are interrelated. Experiences are affected directly by the manner they are treated by clinical staff and this may, in turn, affect carers’ commitment to caring, the way they engage with clinical staff on subsequent occasions and towards the first-episode psychosis service generally.
Relevance to clinical practice. Greater appreciation is needed of the contribution, experience and difficulties caregivers encounter in their role and in engaging with mental health nurses and other clinicians. Additional training is required for clinical staff in family interventions and to familiarise them with legislation and mental health policies relating to carers.
BACKGROUND: There is a growing appreciation of the role and needs of carers for people with mental health problems. Carers are a diverse group, including partners, relatives and friends who are seen as such by service users.
METHODS: Sixty-four carers of people with severe mental health problems served by four different mental health care providers were interviewed using the Experiences of Care-giving Inventory. The districts were selected to differentiate services that are targeted at more severely impaired users from those that include a wider spectrum, and to contrast services that have greater integration between health and social care providers with those whose health and social care agencies operate relatively discretely.
RESULTS: In the two districts where service users had more severe mental health problems, carers worried more about negative symptoms and thought less about good aspects of the caring relationship. In the two districts where health and social services worked more closely together, carers worried significantly less about the need to back up services.
CONCLUSIONS: These findings suggest that service organisation can affect carers, in particular that integration between health and social care for people with mental health problems may benefit carers in ways that were hitherto unproven. They highlight the needs of carers for younger people. They show that the ECI is a useful instrument in measuring the impact of caring for people with severe mental health problems.
Background: Patients with severe and enduring mental health problems are increasingly being cared for in the community. Whilst community services continue to develop it is recognized that family members and friends play an important role in the care process.
Aims: (i) to assess the level of service use and associated costs of carers, (ii) to compare service use to that pertaining in the general population, and (iii) to identify carer characteristics that are predictive of cost variations.
Method: Carers were asked for details of services that they had used over the previous 12 months. Service use from this sample was compared with that in the general population. Costs were calculated and the impact that various carer characteristics had on the variation in costs was analysed.
Results: Data were available on 77 carers. Most carers used community health services and a large proportion also had hospital contacts. Service use was similar to that observed in the general population. The mean total service cost was £354 over the 12-month period. Four factors were each able to explain at least 5% of variation in costs.
Conclusions: Carers use a wide range of services. However, the level of use is similar to that observed in the general population, which may suggest that morbidity in carers is not reflected in increased service use for carers of those with serious mental health problems.
To help fulfil their responsibilities towards unpaid carers, service providers need some idea of the carer's situation and how many might require support. This paper argues that estimating the prevalence of unpaid care across service planning and budgeting cycles provides a better indication of the size and composition of the carer population than estimates at a point in time. The article presents prevalence rates of unpaid adult care from the British Household Panel Survey. It estimates the number of adults providing care at any time during the year for typical catchments or organisational settings, including social services and primary health care. It also provides related figures on carer turnover and changes in the carer population with an explanation of how they may be used and interpreted. As well as focusing on carers who are heavily involved in their caring activities, variations in the psychological well-being are assessed to provide and indication of unmet needs for support.
Objectives: To describe the responses of family carers to the behavioural and psychological symptoms associated with dementia.
Methods: Thirty family carers of people with dementia were identified in a survey of mental disorder in general practice. Another 20 were referred by local aged mental health services. Carers were interviewed using the Manchester and Oxford University Scale for the Psychopathological Assessment of Dementia (MOUSEPAD) which rates behavioural and psychological disturbances. Carers' customary responses to current symptoms were recorded verbatim and categorised using a structured typology.
Results: Symptom frequency increased in line with dementia severity. Disturbances were generally well tolerated. Most were ignored where possible, except for wandering from home. Other common responses included avoiding triggers, providing reassurance, reality orientation, diversion, and collusion with false beliefs. Restrictive or punitive responses were uncommon.
Conclusions: Few carers articulated clear strategies to deal with behavioural and psychological symptoms. For most, tolerance proved more effective and less distressing than arguments and reprimands. Carers' responses are likely to be influenced by social and cultural factors and may differ in other settings. Copyright © 2003 John Wiley & Sons, Ltd.
Relatives or carers of people with mental health problems have criticised professionals for their failures to share information with them. This article reports on a multiple method study comprising a policy search, a survey of service users, carers and professionals, and stakeholder interviews and group events. The study found new policies that addressed the principles underpinning information sharing with carers. However, examples of good practice in professional involvement of carers that took account of carer rights and responsibilities emerged from the research. This suggests the relevance of the carer's assessment, a carer's right to an assessment of his or her circumstances and wishes in assisting understanding of the care context and enhancing appropriate information sharing between professionals and carers.
Mental ill health is very common. Most people with mental health problems live in the community, and as many as 1.5 million people in the UK may be involved in caring for a relative or friend with a mental illness or some form of dementia. Recent legislation and policy initiatives such as the National Strategy for Carers, and the National Service Frameworks for Mental Health and Older People emphasise the importance of providing support for this particular group of carers. The present paper reports the findings of a scoping study to identify what the research tells us about the effectiveness and cost-effectiveness of interventions for the carers of people with mental health problems, and also where there are gaps in the knowledge base. Some 204 evaluation studies were included in the review, just 13 of which had an economic component. The majority of studies were conducted in the USA, and were aimed at carers of people with Alzheimer disease or other forms of dementia. Overall, there was a lack of strong evidence to support any specific interventions, although almost all studies were able to identify some positive outcomes of services provided. In contrast to the relatively narrow approach to effectiveness adopted in most of the studies reviewed, the contributors to a consultation exercise perceived this concept in a far more rounded and holistic way. For them, the process of service delivery was as important as the outcome. There was relatively little research evaluating interventions and services singled out in UK policy initiatives as potentially useful in supporting this group of carers, and further evaluation studies are needed.
Aim. The aim of this was to evaluate the effectiveness of interventions provided by a Community Mental Health Team (CMHT) in reducing stress in carers of individuals with dementia.
Background. The CMHT had been created to working specifically with older people with mental health problems and their carers. Following initial multidisciplinary assessment a range of interventions were provided to both clients and carers according to assessed need. There is an established need for mental health services to focus on the need of carers and the study attempts to see if the interventions provided were useful in reducing carer stress.
Method. The study used a time series design over a 2-year period on all referrals to the CMHT. All carers of individuals with dementia or clearly identified memory problems were invited to participate and a total of 26 carers consented and participated in all stages of data collection. Data were collected on initial assessment, as well as 3 and 6 months following the initial assessment using the Caregiver Strain Index (CSI). A questionnaire was also administered which collected basic demographic information and details of symptoms demonstrated by the carer's relatives.
Results. On initial assessment the mean CSI score for the overall sample was 9·23. The mean CSI reading at 3 months (6·63) and 6 months period (4·12) demonstrated statistically highly significant reductions in carer stress (P = 0·000). A linear stepwise regression analysis of the impact of the different interventions on reductions in the CSI scores showed a statistically significant relationship between respite care and reduction in carer stress (B = 1·705, t = 2·586, P = 0·017).
Conclusion. The results add support to the role of multidisciplinary community based services for individuals with dementia, offering a range of interventions to both clients and their carers, in reducing carer stress. The authors also argue for the routine use of the CSI in such teams as means of monitoring the well-being of carers as well as evaluating the effectiveness of service delivery.
NHS teams should also make carers aware of statutory right to social services assessment and explain process. [Journal abstract]
Background: The prevention of suicide is a key aim for health care authorities and society in general and family members have a principal role in caring for suicidal people. However, the support needs of these essential family carers are relatively unknown. Aim: To explore the support needs of family members of suicidal people. Method: Eighteen participants were interviewed using a short topic guide. Transcripts were analysed using thematic analysis and confirmed by discussion. Findings: Family members of suicidal people have unmet needs (this was the main theme). Four sub-themes emerged: having practical support, respite and advice; feeling acknowledged and included; having someone to turn-to; and consistency of support. Conclusions: Family members are perceived to have an important role in suicide prevention; however some carers experience a lack of support which impinges on their ability to undertake this role. Family members need be included in care and require support from healthcare staff.
User or carer involvement is often seen as intrinsically worth while; but if such involvement is a good thing in itself, it would not matter whether changes resulted from it. However, most people argue for user or carer involvement because they think some useful change will follow as a consequence. Being involved can benefit users or carers both personally (for example, by empowering them or increasing their social contacts) and practically (for example, by enabling them to earn money or learn new skills). Improvements can be made to services as a result of involvement, leading to better relationships between users or carers and staff, and perhaps increased job satisfaction among those working in the service. Targeting services to users' needs may improve the cost-effectiveness of those services.
Background: The family has a primary role in caring for family members who are suicidal and in the prevention of future suicide. However, the impact that suicidal behaviour has on these family members is poorly understood.
Aim: To explore the lived experiences of participants who cared for suicidal family members.
Methods: Eighteen participants were interviewed using a short topic guide. Responses were digitally recorded and transcripts were analysed using thematic analysis.
Results: One overarching theme: “Hard work for the whole family” and four sub-themes: (i) Family burden, (ii) competing pressures, (iii) secrecy and shame and (iv) helplessness and guilt.
Conclusions: Caring for a suicidal family member may be euphemistically summarised as “hard work” that impacts heavily on the day-to-day tasks of other family members. Participants spent much time worrying and ruminating about the risk of suicide in their family member. Mental health care professionals ought to acknowledge and address the impact that suicidal behaviour has on family carers.
This resource is aimed at both care providers and carers focusing on the key messages from the dementia quality standard and explaining how each quality statement relates to each audience. It provides links to key resources, further information, and practical tools which are relative to carers and care providers as appropriate. Drawing on existing guidance, NICE quality standards describe the high priority areas for quality improvement using a set of specific, concise and measurable statements. They cover: discussing concerns about possible dementia; choice and control in decisions; reviewing needs and preferences; leisure activities of interest and choice; maintaining and developing relationships; physical and mental health and wellbeing; design and adaptation of housing; planning and evaluating services; independent advocacy; and involvement and contribution to the community.
The aims of the study were to summarise available research evidence, to identify key gaps in existing knowledge and to identify priorities for further research in the area of services to support carers. The literature review examined and summarised evidence from published and unpublished literature (both UK and international) between 1985 and 2001 about effective and cost-effective services to support carers. In addition, a consultation exercise was carried out by group discussions and telephone interviews and explored the following: • people’s understandings of effectiveness and cost-effectiveness in relation to services to support carers of people with mental health problems • what research was seen as useful and/or a priority for future research • examples of perceived good practice.Eighty per cent of studies included in the literature review used quantitative methods, such as randomised and nonrandomised controlled trials, before-and-after studies (uncontrolled) or studies collecting post-intervention data. The remaining 20 per cent of studies used mainly mixed or qualitative methods. The majority of studies were experimental or quasi-experimental. Studies with long term follow-up were in the minority. Three-quarters of studies used standard outcome measures to evaluate effectiveness. As far as the 13 studies with an economic aspect were concerned, most studies included health care costs and social services costs. Overall, the analysis highlighted methodological weaknesses in the studies under review: small sample sizes, problems with follow up; problems relating to the use of control groups; and short follow-up periods. The consultation involved three groups of stakeholders: representatives from national statutory and voluntary bodies (n=27); managers and practitioners from local organisations that had taken significant steps to improve support to carers of people with mental health problems (n=18); and ‘key informant’ carers (n=19). In addition, a questionnaire was distributed to: delegates at two national conferences; members attending a meeting of a carers’ support workers’ network; and members of a national carers’ organisation.
Objective: To identify factors affecting the health-related quality of life (HRQOL) of informal caregivers assisting people with (multiple sclerosis) MS who have greater functional impairment.
Methods: Data were collected in a national survey of 530 people who provided informal care to people with MS. Multiple linear regression models analyzed these data.
Results: Poorer overall health for the person with MS, stronger agreement by caregivers that care giving was burdensome or emotionally draining, and the caregiver's need for mental health counseling in the past 12 months were associated with lower mental dimensions of HRQOL for the informal caregiver. Greater caregiver satisfaction with the access the person with MS had to MS-focused care was associated with higher mental dimensions of HRQOL among caregivers.
Conclusions: Increasing access to MS-focused care could improve not only the health of people with MS, but also improve the mental dimensions of caregiver HRQOL. Our findings highlight the importance of addressing the mental health needs of informal caregivers assisting people with MS.
Carers play an essential role in the lives of people suffering from mental health problems. Caring is very often a relational activity carried out by family members. Assertive Outreach (AO) services ought to be particularly well placed to support carers, but their impact upon families is not well understood. We set out to understand the intervention of AO services from a family perspective, and in particular to explore its meaning from the perspectives of pairs of carers. Three pairs of carer-parents participated in six individual open-ended interviews. Transcripts were analysed from an interpretative phenomenological perspective. All three families described a series of distressing crisis experiences prior to their relationship with AO. Carers had felt painfully excluded from their parental roles – both by their children and by services. Two further themes illuminated their subsequent relationship with AO: first, carers felt reassured; valued and included; and benefited from improvements in family relationships. Second, there were still concerns about the continuing relationship with professionals, and about the future of their family member – especially in relation to how services might secure these things. It was striking that there were different needs and concerns not only between the three couples but within each pair. Changing roles and relationships within the family were related to what families wanted from services. We note that engagement with systemic ways of working may prove fruitful for the development of AO services.
This report supports and informs the Mental Health Delivery Plan and Delivering for Mental Health. There is a strong focus on acute inpatient care, together with attention and action needed in the community and primary care, with service users and carers around early intervention, better management and treatment. The report covers what good inpatient care should look like and how to achieve it, levers and opportunities for change, and leadership, membership and reporting systems.
Background: Caregiver burden is a multidimensional response to many factors associated with providing assistance to people with multiple sclerosis (MS), including physical, psychological, emotional, and social stressors.
Objective: The aim of this analysis was to identify the characteristics of male informal caregivers, the assistance provided, and the people receiving assistance who were associated with the burden of care.
Methods: Data were collected from a national survey (which included the Mental Component Summary of the SF-8 Health Survey) of informal caregivers and analyzed using an ordered logistic regression model to identify characteristics associated with burden among male informal caregivers.
Results: Greater burden among male caregivers was associated with significantly greater hours per week providing assistance (P = 0.009) and significantly greater restriction on the caregiver's ability to perform daily activities (P < 0.001) due to assisting the person with MS. We found a strong association between the perception of burden and the mental health status of the male caregiver (P < 0.001).
Conclusions: Our findings highlight the strong association of caregiver burden and the Mental Component Summary of the SF-8. Reducing burden may improve the mental health of informal caregivers. Health professionals treating either male caregivers or people with MS should be sensitive to the impact that providing assistance has on the mental health of informal caregivers.
In 2009, The Social Care Institute for Excellence introduced guidelines for practitioners to support families in which parents have mental health problems. Here, SCIE presents a case study demonstrating how the guidance could be successfully applied.
This document sets out the social services national outcomes framework for Wales. The framework describes the well-being outcomes that people who need care and support and carers who need support should expect in order to lead fulfilled lives; sets national direction for services to promote the well-being of people who need care and support, and carers who need support; and provides greater transparency on whether care and support services are improving well-being outcomes for people using consistent and comparable indicators. The well-being outcomes and associated indicators cover a whole range of personal and social dimensions, including: securing rights and entitlements; physical and mental health and emotional well-being; protection from abuse and neglect; education, training and recreation; domestic, family and personal relationships; contribution made to society; social and economic wellbeing; and suitability of living accommodation.
This article outlines the findings and general implications of Mental Health Foundation research into the needs of older Asians with dementia and their carers. The project was carried out in an area with an Asian majority population in North West Kent. The focus is on the identification of need and on factors which block access to care and support. There are recommendations for practitioners and commissioners about raising awareness, service development and training.
Objective: As their differential needs are unknown and to inform service planning, this study (a) examined experiences of caring for adults with acquired brain injury (ABI) and (b) compared these with carers of adults with dementia.
Design: Cross-sectional postal survey. ABI carer experiences were compared with those of a previously studied group of dementia carers using equivalent instruments.
Methods: Family carers (n = 222) of adults with ABI: TBI (49%), strokes (26%), brain infections (18%) and other (7%) completed validated questionnaires assessing physical dependency and psychological problems of those cared for and carers’ own perceived burden, quality-of-life and mental health.
Results: Carer burden, quality-of-life and mental health were worse for ABI carers, but were not predicted by gender, relationship, injury type, physical dependency or cognitive problems in either ABI or dementia carers. Behavioural problems of those cared for varied between the two groups and affected carers differently. Aggressive problems significantly predicted greater burden, poor quality-of-life and mental health in ABI carers, whereas passivity/low mood significantly predicted greater burden and worse quality-of-life in dementia carers.
Conclusions: This study revealed different experiences of caring for younger adults with ABI vs. older adults with dementia, thereby supporting targeted development of services to sustain families affected by these conditions.
In June 2005 it became mandatory for psychiatric trainees to receive training directly from people who experience mental health problems and their carers. This will be checked on approval visits to all training schemes, and accreditation may be withheld until this aspect of training is in place. For many of those who are responsible for training, this may be a new undertaking. The authors outline some of the issues that trainers need to consider when involving service users and carers in their training programmes, including background issues, how to prepare both those delivering and those receiving training, and logistical considerations. It is hoped that this paper will alert trainers to issues that need to be considered if such training is to be successful.
Background: Informal caregiving is an integral part of the care of people with severe mental illness, but the support needs of those providing such care are not often met.
Aims: To determine whether interventions provided to people caring for those with severe mental illness improve the experience of caring and reduce caregiver burden.
Method: We conducted a systematic review and meta-analyses of randomised controlled trials (RCTs) of interventions delivered by health and social care services to informal carers (i.e. family or friends who provide support to someone with severe mental illness).
Results: Twenty-one RCTs with 1589 carers were included in the review. There was evidence suggesting that the carers’ experience of care was improved at the end of the intervention by psychoeducation (standardised mean difference –1.03, 95% CI –1.69 to –0.36) and support groups (SMD = –1.16, 95% CI –1.96 to –0.36). Psychoeducation had a benefit on psychological distress more than 6 months later (SMD = –1.79, 95% CI –3.01 to –0.56) but not immediately post-intervention. Support interventions had a beneficial effect on psychological distress at the end of the intervention (SMD = –0.99, 95% CI –1.48 to –0.49) as did problem-solving bibliotherapy (SMD = –1.57, 95% CI –1.79 to –1.35); these effects were maintained at follow-up. The quality of the evidence was mainly low and very low. Evidence for combining these interventions and for self-help and self-management was inconclusive.
Conclusions: Carer-focused interventions appear to improve the experience of caring and quality of life and reduce psychological distress of those caring for people with severe mental illness, and these benefits may be gained in first-episode psychosis. Interventions for carers should be considered as part of integrated services for people with severe mental health problems.
Background: For those of working age, results are inconclusive when exploring the health impact of providing care. Moreover, population data is lacking and the impact of welfare policies on the caregivers’ health has not been yet analysed.
Methods: Associations between general health and care giving, adjusting for differences in employment and socio-economic position, were explored for working age adults using logistic regression models. Data came from the 2001 British census (n = 1 361 222, 5% sample) and from the 2001 Belgian census (n = 4 368 637). The final model was stratified by employment status, given the significant interaction between caregiving and employment status.
Results: In both countries, when compared with those providing no care, men and women providing ≥20 h of care per week had an increased risk of poor health. This increased risk was attenuated after adjustment for socio-economic position and particularly after adjustment for differences in employment status. However after stratifying by employment status, a dose response relationship between time spent caring and poor health was observed for the employed and unemployed, but not for the economically inactive.
Conclusions: Despite contrasting welfare systems, employment status plays an important role in the association between caring and health in both countries. For the economically active, providing more care increases the risk of poor health. Whilst formal employment may be good for general health, having to informally care whilst in formal employment may have a detrimental health impact.
Crisis resolution teams (CRTs) deliver acute mental health care in the community. This care implies collaboration with carers. The article explores experiences of mental health crisis from the carer’s perspective and what carers experience as helpful and/or unhelpful help from CRTs. In-depth interviews with carers are analyzed using a narrative approach. The configuration of data elements into coherent stories reveals that thematically similar experiences also have a highly personal imprint. Understanding a carer’s individual experiences and needs in a contextual, storied manner can reveal information that is crucial to the collaboration of help that is perceived as helpful within a home-based approach to a mental health crisis.
Aim. The aim of this study was to review research literature over the past 10 years on respite care for people affected by severe mental illness; and identify key implications for nursing practice in provision of respite care for family caregivers of people with severe mental illness.
Background. Family caregivers play an important role in health care, but need regular breaks to maintain their own health and well-being. Respite care is one of the few services available with a primary focus on supporting family caregivers. In most developed countries the notion of respite care as an extension of the health care service has been embraced, evidenced by a growing body of literature in health and health-related disciplines.
Methods. An initial literature search was undertaken using the key words ‘respite’, ‘short-term care’, ‘shared care’ and ‘day care’ in major electronic databases for nursing, psychiatry, psychology and sociology literature between 1967 and 2002, identifying 704 articles. Closer examination of the literature from 1993 to 2002 on gaps and trends in respite care for people affected by severe mental illness was conducted. This is discussed in the context of the broader literature, particularly on dementia, where the mainstream research on respite care is found.
Results. The majority of family caregiving studies identified a need for greater quality, quantity, variety and flexibility in respite provision, and the literature has remained largely silent in relation to those affected by severe mental illness. There are contradictory findings on outcomes of respite care services and a lack of controlled empirical studies and evaluative research on effectiveness.
Conclusions. Respite care is beneficial for caregivers, there is significant unmet need in provision of services for the mentally ill, and greater flexibility and the needs of caregivers should be recognised and addressed.
Introduction: In Spain and the United Kingdom, more than 80% of people with schizophrenia are cared for by informal carers who are at risk of experiencing chronic stress. If this stress is not dealt with in time, a more serious disorder could develop. The present article aims to explore the role of nursing in this group of carers and attempts to answer the question: to what extent do nurses' views of their role affect their practice with carers?
Design: A qualitative study within the framework of Grounded Theory was performed. Four in-depth interviews were analyzed.
Conclusions: Participants perceived carers as coworkers and as a resource for the patient, rather than as potential clients. However, the attitude of nurses seemed to be changing from a perspective focused on the patient and the illness to one that takes the carer's needs and health status into account. More data should be collected to confirm and explore these findings in greater depth.
Improving mental health and treating mental illness are two of our major challenges. We are not unique in facing these challenges and in Scotland we have had much success in promoting rights and recovery, addressing stigma and improving service outcomes. More people are receiving effective treatment and they receive it more quickly than ever before. Increasingly, people have a good understanding of their own mental health and are prepared to talk about things when things are not good. People come from around the world to learn from us. We are rightly proud of what we have collectively achieved. But though Scotland does well, there is more work to do. This Strategy sets out our objectives for the period to 2015. Key challenges are to continue the good work that has already been started to deliver on our commitments to offer faster access to specialist mental health services for young people and faster access to psychological therapies. These targets are world leading in setting expectations for access to mental health services. They demonstrate how in Scotland we truly give mental health parity with other health services in what we do as well as in what we say. We have also made good progress on reducing suicide in challenging conditions and must build on that success.
Background: Informal caregivers provide a significant part of the total care needed by ill or disabled persons. Although informal care is often the preferred option of those who provide and those who receive informal care, caring can nevertheless be very straining. This study investigates construct validation of an instrument of the impact of caregiving, the CarerQol.
Methods: Data was collected among adult caregivers (n = 1,244) selected from the general population using an online questionnaire in October 2010, in the Netherlands. The CarerQol measures and values the impact of informal care. The CarerQol measures subjective burden (CarerQol-7D) and well-being (CarerQol-VAS). Construct validation comprised clinical, convergent and discriminative validity tests.
Results: Clinical validity was supported by statistically significant associations of CarerQol-VAS and caregivers’ health, income and employment status, care recipients’ health, and the relationship between caregiver and care recipient. Convergent validity was supported by positive associations of CarerQol-VAS with the two positive CarerQol-7D dimensions (fulfillment and support) and negative associations with the five negative CarerQol-7D dimensions (relational problems, mental health problems, problems combining daily activities, financial problems and physical health problems). Moreover, CarerQol-VAS was negatively associated with other instruments measuring caregiving burden.
Conclusions: Construct validity tests in a large, heterogeneous sample of caregivers show that the CarerQol validly measures the impact of caregiving. The CarerQol can be used in informal care research and economic evaluations of health care interventions. Hence, its use can facilitate informed decision making in health care.
This article suggests that relational approaches and carer-centred practice in mental health and other services might alleviate some of the burden on the health – both physical and mental – experienced by informal carers. Unhelpful staff attitudes and poor communication are barriers to effective engagement between professionals and carers.
Carer-centred practice requires professionals to identify and develop relationships with carers, appreciate interdependencies and the complexity of need, and involve family members and friends of the service user as expert partners in care.
Increasingly there is greater emphasis on user/carer involvement in the delivery of mental health care. There are five levels of participation from none at all to partnership and optimal involvement. A two-year pilot steering group was established by a health authority in December 2000 and criteria for independent evaluation agreed. These included the context, data collection, analysis and report, and recommendations based on the findings to increase user/carer involvement in all aspects of mental health service delivery. The steering group evaluation included analysis of documents, non-participant observation and semi-structured interviews. The methodology including measures and analysis follows and then the results. Four broad themes from the interviews with user/carer and manager emerged - for the user/carer these were membership, meeting style, sharing perception and having a voice, while the manager themes comprised representation/consultation, steering the steering group and delivering and achieving the [...]
This study investigated the factors contributing to psychological distress and positive affect over time in female working carers of older people. Questionnaires (including measures of work-related, care-related, interpersonal and psychological aspects of working and caring) were distributed to 275 female working carers in the UK, the majority of whom were working as nurses in the National Health Service. In cross-sectional analyses, higher work stress and work demands predicted higher psychological distress among respondents. Better carer health, lower external pressures to care and higher work satisfaction predicted greater positive affect. The combined effects of greater work stress and work demands also predicted higher levels of psychological distress at follow-up (after one year), whereas younger age and lower work stress predicted greater positive affect over time. We conclude that more stressful and demanding work roles appear detrimental to carers’ mental health, while lower stress occupational roles may be beneficial, providing satisfaction and fulfilment outside of the caring role. Older female carers may be especially at risk of psychological distress, possibly due in part to increasing health problems of their own.
Purpose: The purpose of this paper is to assess the impact of a mental health carers’ research reference group on mental health research in the Heart of England region. Design/methodology/approach: The methodology was a co-produced participatory evaluation, and the research was co-produced by the group. The design involved a literature review of carers’ involvement in UK mental health research, and collection of secondary data (group records) and primary data from researchers, group members, and facilitators. Analysis was initially thematic, then synthesised. Findings: The group’s work had a positive impact on researchers and group members, and to some extent on mental health research and networks more widely. No negative impact was identified. Research limitations/implications: The researchers were not able to contact or include everyone who had been involved with the group. Some of those who did not give input may have felt less positive about the group than those who did respond. Co-production does not signify equality. Evaluation inevitably involves bias.
Practical implications – The conclusion is that mental health carers have a unique and positive contribution to make to mental health research, and have the right to be involved in such research in a non-tokenistic way. This has practical implications for mental health and mental health research services.
Originality/value – This is the first mental health carer-controlled evaluation of a mental health carer research reference group. Mental health carers conducted the research and wrote this paper, giving a perspective rarely found in the literature. This has value for people working in, studying, and researching mental health, and for other mental health carers.
This guideline covers preventing, diagnosing, assessing and managing dementia in health and social care, and includes recommendations on Alzheimer’s disease. It aims to improve care for people with dementia by promoting accurate diagnosis and the most effective interventions, and improving the organisation of services.
Objectives: This paper looks to examine the emerging role of carers as essential components in the management of individuals affected by severe mental illness in the context of modern legal and health policy environments. Conclusions: Cultural and legal concepts of confidentiality within the doctor–patient relationship are complex. Increasingly, evidence is recognizing the essential role of carers in the quality management of individuals affected by severe mental illness and this emphasis is being further supported by innovative health policy and legislation. A public health definition for the role of carers may be a more appropriate way to consider their role in mental health management strategies.
Purpose of review: To summarize the latest research on the risks and consequences of the burden that may be imposed on informal carers of persons living and dying with advanced heart failure.
Recent findings: A systematic search in PubMed over the period 2013?2014 ultimately revealed 24 original articles included in this review. From this research update it can be concluded that the body of knowledge increased with more studies focusing on caregivers of patients with advanced heart failure.
Summary: Caregivers are important partners in care and their lives are seriously affected by the condition of advanced heart failure. Studies on the longitudinal effects of the caregiving role on caregiver's quality of life and on caregiver contributions to patient outcomes is still scarce. Focus of current research is moving towards relationship aspects. Dyadic-care typologies and the concept of incongruence within dyads in terms of conflicting perspectives on how to manage the heart failure are new and important concepts presented in studies presented in this review. Heart failure patients and their caregivers still lack sufficient palliative care and communication on prognosis and end-of-life care. More research is needed to determine the optimal time to start palliative interventions to support caregivers of patients with advanced heart failure.
This study explored professional views about the needs of young carers of adults with mental health problems. Sixty five participants were interviewed and included professionals from the health, social care and voluntary sectors. Respondents were asked to comment on their understanding of the needs of young carers and appropriate methods or interventions to address these needs. Findings include: young carers'perceived isolation, restricted opportunities and stigma; fears involving child protection and family separation; and examples of good professional practice upon which to build.
Alzheimer's disease (AD) is one of the leading causes of dependency among older adults and of institutionalization in Europe. The number of people with AD is estimated in 10 million people and the cost of the disease has been recently estimated in 100.000 million of euros per year in the European Union (European Brain Council, 2011). There is nowadays no effective treatment of the disease. Currently, care of AD patients is primary sustained by informal caregivers who suffer burden as a result of their care responsibilities, and consequently are mainly affected by mental health problems (depression, anxiety, etc). This burden is also related with a premature institutionalization and violence against AD patients. In this sense, effective solutions are needed in order to fight against the mental health problems of informal caregivers. Regarding this, a social innovation research, funded by the Progress Programme of the DG of Employment, Social Affairs and Inclusion of the European Commission, is being developed currently in France and Spain, where the authors are aimed to demonstrate how a specialized formal training in AD addressed to people in risk of labour and social exclusion could improve the quality of life of AD patients and reduce the informal caregiver burden. The results of this research is specially relevant to help to reduce mental health problems of the informal carers of AD patients, but also in terms of intervene on the cognitive skills of the persons affected, as well as to allow the employment of socially excluded people.
Government policy has directed local services to address the needs of carers as a way of maintaining care in the community. This study was initiated to enable carers to develop an information pack based upon their identified needs. Cooperative inquiry was the method used to ensure full participation of the carers. Group meetings were already in existence through a charity organization who provides a carers support network. The first author participated in a number of carers group meetings. Cooperative inquiry was used to clarify a number of themes identified and reflective cycles ensured that those themes remained relevant. It was found that carers did want to be involved in their relative's care, not as passive recipients but as collaborative care providers. To do this they need to be fully informed of the processes of care provision. Carers need information that is relevant, easily accessible and obtainable in varying degrees of comprehension. This study suggests that a culture shift within mental health nursing is necessary if professionals are to recognize that a perceived lack of support may lead to a breakdown in relationships between the carer, the person being cared for and the professionals.
‘This leaflet is about confidentiality issues which arise between mental health professionals and carers of adults with mental health problems, in particular those who provide on-going help and support, without payment, to a relative, partner or friend.
The issues of confidentiality and information-sharing between mental health professionals and carers are difficult and complex to resolve. Some of these problems are described, together with examples of good practice which may help address them.’
Objectives: Caregivers (CGs) of older adults have unique and diverse needs for intervention. The present studies describe the characteristics of CGs and caregiving situations and how these relate to CG therapy utilization patterns in a community mental health setting.
Method: Study 1: Through chart review, the researchers explored service utilization patterns and identified preliminary typologies of Caregiver Family Therapy (CFT) clients, N = 23. Study 2: By conducting a second chart review, the researchers sought to determine whether the categories that emerged in Study 1 applied to a second group of CFT clients, N = 36.
Results: Study 1: Four distinct categories of CGs emerged: High-Distress (high disorganization, high complexity), Resourceful but At-Risk (low disorganization, high complexity), Non-Committal (high disorganization, low complexity), and Model CGs (low disorganization, low complexity). Study 2: While the ability to classify CGs into category proved to have some inconsistencies, preliminary evidence suggests the ability to predict utilization once CGs were placed into category was good. In Study 2 a fifth category emerged: High Functioning but Static, which suggests CGs were on a continuum ranging from high to low on family organizational style and CG situation complexity.
Conclusion: While caregiving situations vary widely among families and across time, this article provides a preliminary typology of CGs that may assist clinicians in tailoring CG interventions to meet the needs of their clients based on information garnered early in therapy, perhaps as early as the intake process.
Reactions to caregiving and depression affect a carer's ability to continue in their caring role. This paper examines the relationship between reactions to caregiving and depression in carers of frail, older people and is a cross-sectional study of carers of community-living people (≥70 years), identified as frail, who completed a postal questionnaire. Reactions to caregiving were evaluated using the Caregiver Reaction Assessment. Anxiety and depression symptoms were measured using the Hospital Anxiety and Depression Scale. Borderline depressive symptoms were reported in 15% of carers, and 10% had abnormal depressive symptoms. Anxiety symptoms in the carers were slightly higher at 24% and 12%, respectively. Multiple regression indicated that the impact on carers' daily schedules (β = 1.419, P = 0.001; β = 1.162, P = 0.025) and their health (β = 1.509, P = 0.007; β = 1.850, P = 0.006) as a result of caregiving explained 49% of the variance in carers' depressive symptoms (P < 0.001) and 42% of the variance in their anxiety symptoms (P < 0.001). Specific reactions to caregiving are important predictors of depressive and anxiety symptoms in carers of frail, older people. Regular carer support services and targeted health-care initiatives could alleviate or lessen negative reactions associated with caregiving, such as depression.
Sets out a roadmap for the implementation of the Personalised Health and Care 2020 strategy, focusing on access to comprehensive data on outcomes and value of services. The document sets out a vision for the data needed by the NHS and social care, as developed through an initial round of engagement with a selection of arms-length bodies. It identifies potential data areas covering the whole of health and social care including, for instance, adult social care, child and adolescent mental health services, children, and mental health. For each area the document identifies the potential impact of having high quality data, current data available and key gaps.
Young carers doing more than 50 hours of care a week are five times more likely to report that their health is 'not good'. There are an estimated 700,000 young carers in the UK; people who are under 18 who help look after someone in their family, or a friend, who are ill, disabled or misuse drugs or alcohol. The report highlights recommendations based on discussions with young carers, sector leaders and young carers services in the Carers Trust network. 'Invisible and in distress: prioritising the mental health of England's young carers' found that while young carers frequently report that their caring role can cause distress and impact on their mental health, there are gaps in support and there are barriers that prevent them from accessing the support that they need.
Key findings
Nearly half of the young carers in the survey (48%) said that being a young carer made them feel stressed and 44% said it made them feel tired.
A different survey of 61 young carers in school found that 38% had mental health problems.
The demands of their caring role and their family’s circumstances were often one of the reasons they found it difficult to access support, from the difficulty of arranging appointments without help from a parent, to worrying about revealing that they are “not good enough” to care for their family member.
The criteria for accessing Children and Adolescent Mental Health Services can discourage young carers from getting support so that problems become even harder to tackle and cause more harm.
Key recommendations
Caring roles amongst children and young people should be seen as a risk factor for their mental health.
NHS England, the Department of Health, mental health trusts and local authorities can implement frameworks developed by Carers Trust, such as the Young Carers in Schools programme or Triangle of Care for Young Carers to ensure that the right information and support is given to young carers. They should ensure that they meet their duties to support young carers under the Children and Families Act 2014 and Care Act 2014.
This guide is one in a series about the new the Mental Health (Care and Treatment) (Scotland) Act 2003, which came into effect in October 2005. This guide focuses on emergency and short-term powers. This guide is written for people who have a mental disorder, but it may be of interest to others including carers and advocacy workers.
The participation of service users in all aspects of mental health service delivery including policy development, service planning and evaluation is increasingly an expectation of contemporary mental health care. Although there are a growing number of publications reporting service-user perspectives in the evaluation of mental health services, little attention has been paid to the views of service users about mental health triage services. The purpose of the study reported here was to examine service-users' (consumers and informal carers) experiences of a telephone-based mental health triage service. Using a framework developed from the World Health Organisation's elements of responsiveness, we conducted structured telephone interviews with service users who had contacted a telephone-based mental health triage service in regional Victoria, Australia. The main findings of the study were that consumers experienced more difficulty than carers in accessing the service and that, although most participants were satisfied, only a minority reported being involved in decision-making. Further work is needed to improve accessibility of mental health triage services and to investigate barriers to consumer self-referral. Professional development and practice support systems should be established to support mental health triage nurses in the development of collaborative, consumer-focused care.
Purpose: This study examined activity changes in female carers for working-age husbands with mild to moderate stroke. It explored whether carers who reduced or quitted some of their valued activities had more burden and decreased health compared with other carers who continued their valued activities.
Method: This was a cross-sectional, quantitative self-report study. The Activity Card Sort measured reduction or termination of valued activities as a potential indicator of secondary strains, such as role captivity, constricted social life and loss of self. Outcomes were health-related quality of life and burden.
Findings: Eleven of the 20 participants reduced or quitted some of their valued activities. This change was labelled ‘occupational loss’. Several statistically significant differences were found: carers with occupational loss reported more primary stressors, higher levels of burden, less vitality and lower general mental health. No difference between groups was found for physical health.
Conclusion: Data from this study suggest that occupational loss may be related to deleterious outcomes for family carers. Further investigation with a larger sample and longitudinal design could explore the nature of that relationship to guide occupational therapy with this population.