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Mental health

The following resources examine caring for people with mental health needs.

Click on the title of any resource to find out more about the source of the information such as the type of reference, ISBN/ISSN, publication year, keywords. A number of these fields can be used to find further resources i.e. with the same keywords, or by the same author using the links on the right-hand side and within the Key Information box.

You can also click on an author's name in the list below to find further resources by that author, and use the DOI and other links to access the original source material (note: some source materials require subscription or permission to access).
 

Parent-child interactions and childhood OCD: Comparing OCD families with other clinical and non-clinical families

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.

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Depression, anxiety and quality of life impairment in parents of children with functional lower urinary tract dysfunction

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. 

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The needs and service preferences of caregivers of youth with mental health and/or addictions concerns

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. 

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Factors Affecting the Health of Caregivers of Children Who Have an Intellectual/Developmental Disability

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.

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An intensive family-based treatment guided intervention for medically hospitalized youth with anorexia nervosa: Parental self-efficacy and weight-related outcomes

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. 

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Depression and associated factors among parents of children diagnosed with cancer at Tikur Anbessa Specialized Hospital, Addis Ababa, Ethiopia

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. 

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Family-Focused Therapy for Bipolar Disorder: Reflections on 30 Years of Research

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. 

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Rewards of parenting children and adolescents with spinal cord injuries

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.

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Caregiver mental health and HIV-infected child wellness: perspectives from Ugandan caregivers

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.

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Effect of a Videoconference-Based Online Group Intervention for Traumatic Stress in Parents of Children With Life-threatening Illness: A Randomized Clinical Trial

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.

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An exploration of caregiver burden for children with nodding syndrome (lucluc) in Northern Uganda

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.

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Determinants of care efficiency in a group of Polish parents raising children with different developmental disorders: a cross-sectional study

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.

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CHAMP+ Thailand: Pilot Randomized Control Trial of a Family-Based Psychosocial Intervention for Perinatally HIV-Infected Early Adolescents

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.

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Understanding Barriers to Initial Treatment Engagement among Underserved Families Seeking Mental Health Services

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.

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Time burden of caring and depression among parents of individuals with cerebral palsy

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. 

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Youth Transition Home from Residential Mental Health Treatment: Caregivers' Perspective

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. 

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Barriers to care in pediatric cancer: The role of illness uncertainty in relation to parent psychological distress

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.

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School satisfaction in parents of children with severe developmental disabilities

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. 

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Emotional symptoms and family functioning in caregivers of children with newly diagnosed leukemia/lymphomas and solid tumors: Short-term changes and related demographic factors

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. 

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Six‐Month Follow‐up of the Families on Track Intervention Pilot Trial for Children With Fetal Alcohol Spectrum Disorders and Their 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.

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Findings from the Families on Track Intervention Pilot Trial for Children with Fetal Alcohol Spectrum Disorders and Their Families

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.

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Changes in caregiver depression, anxiety, and satisfaction with family relationships in families of children who did and did not undergo resective epilepsy surgery

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. 

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“Immersion in an ocean of psychological tension:” The voices of mothers with children undergoing hemodialysis

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.

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Stress among the caregivers of mentally disabled children visiting a rehabilitation centre in Chennai, Tamil Nadu - A cross-sectional study

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.

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Impact of Race and Socioeconomic Status on Psychologic Outcomes in Childhood Cancer Patients and Caregivers

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.

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Take A Breath: study protocol for a randomized controlled trial of an online group intervention to reduce traumatic stress in parents of children with a life threatening illness or injury

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.

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How do you define recovery? A qualitative study of patients with eating disorders, their parents, and clinicians

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.

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Responding to families with complex needs: a national survey of child and family health nurses

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

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Initial Challenges of Caregiving During COVID-19: Caregiver Burden, Mental Health, and the Parent-Child Relationship

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. 

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A longitudinal examination of dyadic distress patterns following a skills intervention for carers of adolescents with anorexia nervosa

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.

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Finding Fit between Work and Family Responsibilities when Caring for Children with ADHD Diagnoses

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. 

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The Lived Experience of Fathers Caring For a Child with Cystic Fibrosis

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.

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Quality of Life in Caregivers of Patients With Cystic Fibrosis: An Integrated Literature Review

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.

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The power of siblings and caregivers: under-explored types of social support among children affected by HIV and AIDS

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.

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Psychosocial Risk Profiles Among American and Dutch Families Affected by Pediatric Cancer

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.

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The burden of systemic juvenile idiopathic arthritis for patients and caregivers: an international survey and retrospective chart review

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.

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The Applicability of the "Revised Burden Measure" in Pediatric Settings: Measuring Parents' Caregiving Burdens and Uplifts

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. 

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Caregiver responses to early cleft palate care: A mixed method approach

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.

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Family engagement and support in mental health treatment: Caregiver perspectives and new approaches to care delivery

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.

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Family Psychoeducation Program to Support Caregivers and Children/Adolescents with Mood and Anxiety Disorders

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.

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Perceptions and experiences of stigma among parents of children with developmental disorders in Ethiopia: A qualitative study

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.

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A Sociodemographic variables questionnaire (Q-SV) for research on family caregivers of children with chronic disease

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.

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Factors associated with anxiety in family caregivers of 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. 

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Long-Term Efficacy of the Workshop Vs. Online SUCCEAT (Supporting Carers of Children and Adolescents with Eating Disorders) Intervention for Parents: A Quasi-Randomised Feasibility Trial

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.

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Assessment of Physical Child Abuse Risk in Parents with Children Referred to Child and Adolescent Psychiatry

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.

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Stress and the Home Environment in Caregivers of Children with Sickle Cell

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. 

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Screening for caregiver psychosocial risk in children with medical complexity: a cross-sectional study

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. 

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Spiritual and religious coping and depression among family caregivers of pediatric cancer patients in Latin America

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.)

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Caregiver accommodation in adolescents with avoidant/restrictive food intake disorder and anorexia nervosa: Relationships with distress, eating disorder psychopathology, and symptom change

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.)

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Supporting family engagement with child and adolescent mental health services: A scoping review

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. 

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Mitigating distress and promoting positive aspects of caring in caregivers of children and adolescents with schizophrenia: Mediation effects of resilience, hope, and social support

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.)

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Caregiver Perspectives of Stigma Associated With Sickle Cell Disease in Adolescents

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.

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Family-Based Crisis Intervention With Suicidal Adolescents: A Randomized Clinical Trial

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.

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Anxiety-associated and separation distress-associated behaviours in Angelman syndrome

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. 

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Personalized and yet standardized: An informed approach to the integration of bereavement care in pediatric oncology settings

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.

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"My Whole World Fell Apart": Parents Discovering Their Child Has Anorexia Nervosa

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.

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"My Whole World Fell Apart": Parents Discovering Their Child Has Anorexia Nervosa

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.

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The Multilevel Relationships of HIV-Related Stigma to Child and Caregiver Mental Health among HIV-Affected Households in South Africa

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.)

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Implementing Multi-Family Therapy Within a Community Eating Disorder Service for Children and Young People

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. 

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The effects of caregiver depression on childhood asthma: Pathways and mechanisms

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. 

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Quality of life and burden in caregivers of youth with obsessive-compulsive disorder presenting for intensive treatment

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.

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Anxiety among caregivers of children with epilepsy from western China: A cross-sectional survey

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.

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Evaluation of anxiety, depression, and sleep quality among parents of children with epilepsy in Southern China

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. 

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Exploring the Experiences of Parent Caregivers of Adult Children With Schizophrenia: A Systematic Review

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.

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Protocol for 'Resilient Caregivers': a randomised trial of a resilience-based intervention for psychologically distressed partner caregivers of patients with cancer

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.

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Process Evaluation of Internet-Based Cognitive Behavioral Therapy Intervention for Informal Caregivers

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. 

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Prevalence and factors associated with psychological distress among family caregivers: A cross‐sectional study

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.

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Predictors of Caregiver Burden in Huntington's Disease

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.

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Post-traumatic growth of family members of deceased cancer patients and related factors in Japan: A cross-sectional study

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. 

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Physical activity, confidence and quality of life among cancer patient-carer dyads

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.

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Perceptions of loneliness and well‐being of psychiatric patients' families

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.

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Psychosocial effects of the humanoid socially assistive robot Coach Pepper on informal caregivers of people with dementia: A mixed-methods study

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. 

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Is the health literacy of informal caregivers associated with the psychological outcomes of breast cancer survivors?

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. 

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Introduction and Psychometric Validation of the Resilience and Strain Questionnaire (ResQ-Care)— A Scale on the Ratio of Informal Caregivers' Resilience and Stress Factors

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. 

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The influence of family social support on quality of life of informal caregivers of cancer patients

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. 

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The impact of patient delirium in the intensive care unit: patterns of anxiety symptoms in family caregivers

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). 

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Mental health, substance use, and suicidal ideation among unpaid caregivers of adults in the United States during the COVID-19 pandemic: Relationships to age, race/ethnicity, employment, and caregiver intensity

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. 

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Mental health service engagement with family and carers: what practices are fundamental?

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. 

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Fruit and vegetable intake and mental health among family caregivers of people with dementia in Uganda

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. 

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Relationship Between Caregiver Uncertainty, Problem-Solving, and Psychological Adjustment in Pediatric Cancer

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.

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Family caregivers’ perceived communication self-efficacy with physicians

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.

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Factors Associated with Quality of Life among Caregivers of People with Spinal Cord Injury

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.

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Modifiable personal and environmental factors associated with anxiety in family caregivers of children with disabilities: A comparison between parents and grandparents

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. 

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Self-care, resilience, and caregiver burden in relatives of patients with advanced cancer: results from the eQuiPe study

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) 

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Psychological well-being and family distress of Italian caregivers during the COVID-19 outbreak

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.

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Psychological consequences for family caregivers of patients receiving hemodialysis: threat or opportunity?

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. 

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Stroke Rehabilitation Use and Caregiver Psychosocial Health Profiles in Singapore: A Latent Profile Transition Analysis

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. 

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Online Education and Cognitive Behavior Therapy Improve Dementia Caregivers' Mental Health: A Randomized Trial

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.

 

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Suicidal Ideation After Acute Traumatic Brain Injury: A Longitudinal Actor-Partner Interdependence Model of Patients and Caregivers in Latin America

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.

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Technology-Based Interventions for Cancer Caregivers: Concept Analysis

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.

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Stress and Coping Among Family Caregivers of Patients With a Destination Therapy Left Ventricular Assist Device: A Multicenter Mixed Methods Study

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.

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Testing a Model of Resilience in Family Members of Relatives with Traumatic Brain Injury vs Spinal Cord Injury: Multigroup Analysis

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. 

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Testing a Self-Determination Theory Perspective of Informal Caregiving: A Preliminary Study

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.

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The effect of the emotion regulation training on the resilience of caregivers of patients with schizophrenia: a parallel randomized controlled trial

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 

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The burden of caring for adults with depression and suicidal ideation in five large European countries: analysis from the 2020 National Health and Wellness Survey

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.

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Family caregivers of people with dementia have poor sleep quality: A nationwide population-based study

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. 

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The Association of Positive or Negative Religious Coping Methods With Psychological Distress and Quality of Life Among Parents of Infants With Congenital Heart Disease

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.

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Factors influencing caregiver burden by dementia severity based on an online database from Seoul dementia management project in Korea

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. 

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Prevalence of perceived stigma and associated factors among primary caregivers of children and adolescents with mental illness, Addis Ababa, Ethiopia: Cross-sectional study

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.

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The Full Mediating Role of Loneliness on the Relationship Between Social Support and Depression Among Rural Family Caregivers of Persons With Severe Mental Illness

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. 

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The psychological effects of caring for a family member with dementia

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. 

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Social support moderates the effect of stress on the cortisol awakening response in dementia family caregivers

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. 

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Effectiveness of a mindfulness-based intervention program for women family caregivers of older adults

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 &lt; 0.01) and burden (β = −0.190, p &lt; 0.01) and increasing well-being (β = 0.107, p &lt; 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. 

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Discordance between family report and clinical assessment of suicide attempts: a prospective study from the emergency department

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.

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e-Health as a tool to improve the quality of life of informal caregivers dealing with stroke patients: Systematic review with meta-analysis

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.

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Effectiveness of Remote Interventions in Improving Caregiver Stress Outcomes for Caregivers of People With Traumatic Brain Injury

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. 

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Developing a Unifying Model of Resilience in Dementia Caregiving: A Scoping Review and Content Analysis

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. 

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Depressive-Symptom Trajectories From End-of-Life Caregiving Through the First 2 Bereavement Years for Family Caregivers of Advanced Cancer Patients

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.

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Culturally adapted psychoeducation among family caregivers of schizophrenic clients: A scoping review

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. 

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Cross-sectional study evaluating burden and depressive symptoms in family carers of persons with age-related macular degeneration in Australia

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. 

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Development and psychometric evaluation of the perceived care tension questionnaire for caregivers of hemodialysis patients: A mixed method study

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. 

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The burden of Alzheimer’s caregivers and social support in the Tunisian family

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.

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Combining a variable‐centered and a person-centered analytical approach to caregiving burden – a holistic approach

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. 

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Clinicians for CARE: A Systematic Review and Meta-Analysis of Interventions to Support Caregivers of Patients With Heart Disease

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.

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Challenges to Family Caregivers in Caring for Gastric Cancer Patients from Perspectives of Family Caregivers, Patients, and Healthcare Providers: A Qualitative Study

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. 

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Caring for persons with drug use disorders in the Yangon Region, Myanmar: Socioeconomic and psychological burden, coping strategies and barriers to coping

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. 

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The impact of coronavirus disease 2019 on emotional and behavioral stress of informal family caregivers of individuals with stroke or traumatic brain injury at chronic phase living in a Mediterranean setting

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.

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The use of technology by people with dementia and informal carers during COVID-19: a cross-country comparison

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.

 

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Caregiving Role and Psychosocial and Individual Factors: A Systematic Review

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.

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Caregiver Burden in Schizophrenia and Autism Spectrum Disorders: A Comparative Study

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.

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Caregiver Burden in Caregivers of Acute Stroke Patients: From a Biopsychosocial Perspective in a Turkey Sample

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.

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Family Caregiver Experience of Resistance to Care: Occurrence Patterns, Context, and Impact on Caregiver

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. 

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Preliminary investigation of family caregiver burden and oral care provided to homebound older patients

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.

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Informal caregivers of older Muslims diagnosed with cancer: A portrait of depression, social support, and faith

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.

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Older adults with chronic illness – Caregiver burden in the Asian context: A systematic review

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. 

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The psychological symptom burden in partners of pancreatic cancer patients: a population-based cohort study

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. 

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Exploring the experiences of living with Lewy body dementia: An integrative review

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.

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Caregiver burden among family caregivers of incurable cancer patients in two eastern Mediterranean countries

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. 

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Understanding the Implications of Peer Support for Families of Children With Neurodevelopmental and Intellectual Disabilities: A Scoping Review

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. 

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Designing a need-based program for relieving psychological distress of family caregivers of leukemia patients: a randomized controlled trial

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. 

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Deriving implications for care delivery in parkinson’s disease by co-diagnosing caregivers as invisible patients

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. 

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Use of antidepressants among Finnish family caregivers: a nationwide register-based study

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. 

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An App-Based Just-in-Time Adaptive Self-management Intervention for Care Partners (CareQOL): Protocol for a Pilot Trial

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

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Anxiety, depression, and stress in caregivers of children and adolescents with mental disorders in Ghana and implications for medication adherence

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. 

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Association Between Caregiver Depression and Elder Mistreatment-Examining the Moderating Effect of Care Recipient Neuropsychiatric Symptoms and Caregiver-Perceived Burden

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.

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Association between having cancer and psychological distress among family caregivers using three years of a nationwide survey data in japan

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. 

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Caregiver empowerment program based on the adaptation model increase stroke family caregiver outcome

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. 

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A New Stage of the Caregiving Career: Informal Caregiving after Long-term Institutionalization

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. 

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Factors associated with carer psychological and physical health during end-of-life caregiving: An observational analysis of a population-based post-bereavement survey of carers of people with cancer

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. 

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A multicenter study on quality of life of the “greater patient” in congenital ichthyoses

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. 

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Mental health outcomes and experiences of family caregivers of children with disabilities during the COVID-19 pandemic in Bolivia

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.

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A Comparison of Caregiver Burden of Patients with Advanced Cancer in Different Palliative Cancer Care Settings

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 

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A comparison of caregiver burden between long-term care and developmental disability family caregivers

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. 

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The Effects of the Modified Transtheoretical Theory of Stress and Coping (TTSC) Program on Dementia Caregivers' Knowledge, Burden, and Quality of Life

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.

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Rehabilitation services lockdown during the COVID-19 emergency: the mental health response of caregivers of children with neurodevelopmental disabilities

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.

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The Effects of the Modified Transtheoretical Theory of Stress and Coping (TTSC) Program on Dementia Caregivers' Knowledge, Burden, and Quality of Life

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.

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The Effects of the Modified Transtheoretical Theory of Stress and Coping (TTSC) Program on Dementia Caregivers' Knowledge, Burden, and Quality of Life

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.

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The Effects of the Modified Transtheoretical Theory of Stress and Coping (TTSC) Program on Dementia Caregivers' Knowledge, Burden, and Quality of Life

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.

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The Effects of the Modified Transtheoretical Theory of Stress and Coping (TTSC) Program on Dementia Caregivers' Knowledge, Burden, and Quality of Life

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.

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Stress and Depression in Family Members of Patients with Dementia in Urban and Rural Communities: Cross-Sectional Surveys in Korea

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.

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Peer support interventions for parents and carers of children with complex needs

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. 

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Psychosocial outcomes of dyadic arts interventions for people with a dementia and their informal caregivers: A systematic review

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.

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Psychosocial Issues Among Primary Caregivers of Patients with Advanced Head and Neck Cancer-A Mixed-method Study

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.

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Providing informal care next to paid work: Explaining care-giving gratification, burden and stress among older workers

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. 

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Choral Singing Enriches Everyday Life for People With Mild to Moderate Dementia and Their Family Caregivers

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. 

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Caregiving Stress and Self-Rated Health during the COVID-19 Pandemic: The Mediating Role of Resourcefulness

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.

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Associations between young informal caring and mental health: a prospective observational study using augmented inverse probability weighting

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. 

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Associations between perceived stress and quality of life in gynaecologic cancer patient-family caregiver dyads

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. 

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‘How to cope with stress?’ Determinants of coping strategies used by parents raising children with intellectual disabilities, other developmental disorders and typically developing children. A cross-sectional study from Poland

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.

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"Together We Stand": A Pilot Study Exploring the Feasibility, Acceptability, and Preliminary Effects of a Family-Based Psychoeducational Intervention for Patients on Hemodialysis and Their Family Caregivers

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.

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Whose story is it? Mental health consumer and carer views on carer participation in research

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.

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A Whirlpool of Stress in Families of Intensive Care Unit Patients: A Qualitative Multicenter Study

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.

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When Financial Health Is Tied to Mental Health: Predictors of Hospice Cancer Caregivers' Psychological Well-Being (SCI949)

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.

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Well‐being and needs of Malay carers of people with mental illness in Singapore

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.

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WeChat use among family caregivers of people living with schizophrenia and its relationship to caregiving experiences

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. 

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“We are humans after all”: Family caregivers’ experience of caring for dependent older adults in Brazil

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. 

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Variables associated with distress amongst informal caregivers of people with lung cancer: A systematic review of the literature

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.

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Use of psychotropic drugs and its association with overburden on family caregivers of psychosocial care center users

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.

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Use of the ADAPTE method to develop a clinical guideline for the improvement of psychoses and schizophrenia care: Example of involvement and participation of patients and family caregivers

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.

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Work, Leisure Time Activities, and Mental Health among Family Caregivers of the Elder People in Japan

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.

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What does anorexia nervosa mean? Qualitative study of the representation of the eating disorder, the role of the family and treatment by maternal caregivers

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.

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Young adults suffering from mental illness: Evaluation of the family‐centred support conversation intervention from the perspective of mental healthcare professionals

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.

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'Triadic' shared decision making in mental health: Experiences and expectations of service users, caregivers and clinicians in Germany

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.

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Trends of concerns from diagnosis in patients with advanced lung cancer and their family caregivers: A 2-year longitudinal study

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.

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Time Effects of Informal Caregiving on Cognitive Function and Well-Being: Evidence From ELSA

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.

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Therapy-related stress in parents of children with a physical disability: a specific concept within the construct of parental stress

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.

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Telehealth Interventions for Family Caregivers of Persons with Chronic Health Conditions: A Systematic Review of Randomized Controlled Trials

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.

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Systematic review of factors associated with hope in family carers of persons living with chronic illness

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.

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Symptom distress and quality of life among Black Americans with cancer and their family caregivers

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.

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Supporting the Support Network: The Value of Family Peer Work in Youth Mental Health Care

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.

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Support groups for family caregivers of persons with dementia in India

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.

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Suicidality in family caregivers of people with long-term illnesses and disabilities: A scoping review

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.

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Subjective caregiver burden and anxiety in informal caregivers: A systematic review and meta-analysis

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.

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Study of physical, psychological, and spiritual impact of family caregiver in home-based stroke treatment: A systematic review

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. 

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Structural equation model of affecting factors on elder abuse to patients under hemodialysis by family caregivers

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.

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Spouse and Adult-Child Dementia Caregivers in Chinese American Families: Who Are More Stressed Out?

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.

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Social support and quality of life among rural family caregivers of persons with severe mental illness in Sichuan Province, China: mediating roles of care burden and loneliness

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. 

 

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Social Interactions between Family and Community-Based Service Providers in Dementia Caregiving

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. 

 

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Smarthealth technology study protocol to improve relationships between older adults with dementia and family caregivers

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).

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Silent suffering of the dying and their families: impact of COVID‐19

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.

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Short-term impacts of COVID-19 on family caregivers: Emotion regulation, coping, and mental health

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.

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Sensitizing family caregivers to influence treatment compliance among elderly neglected patients—a 2-year longitudinal study outcome in completely edentulous patients

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. 

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Self-Reported Physical and Mental Health of Informal Caregivers of Emergency Service Workers

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. 

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Self-reported burden of caregiver of adults with depression: a cross-sectional study in five Western European countries

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.

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Self-Care for Caregivers of Individuals Living With Multiple Sclerosis: Testing Mediation Models of Caregiver Stress, Health, and Self-Care

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.

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The scope of carer effects and their inclusion in decision-making: a UK-based Delphi study

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.

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Revealing the Invisible Emotion Work of Caregivers: A Photovoice Exploration of Informal Care Provided by Family Caregivers for Post-9/11 Veterans With Traumatic Brain Injuries

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.

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Resilience of family caregivers of children and adolescents in treatment of neoplasms and associated factors

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.

 

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Relieving distressed caregivers (ReDiCare study): study protocol of a randomized pragmatic trial

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/).

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Relatives' experiences of providing care for individuals with suicidal behaviour conceptualized as a moral career: A meta-ethnographic study

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.

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Relationship Satisfaction in People with Parkinson’s Disease and Their Caregivers: A Cross-Sectional Observational Study

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.

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A randomized clinical trial assessing a pragmatic intervention to improve supportive care for family caregivers of patients with lung cancer

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.

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Quality of life in caregivers of patients receiving chimeric antigen receptor T‐cell therapy

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.

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A qualitative study on the needs of cancer caregivers in Vietnam

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. 

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Qualitative research of informal caregivers’ personal experiences caring for older adults with dementia in Lithuania

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.

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A qualitative investigation into the impact of hemophagocytic lymphohistiocytosis on children and their caregivers

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. 

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Qigong mind-body program for caregivers of cancer patients: design of a pilot three-arm randomized clinical trial

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

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Psychosocial predictors of adverse outcomes in rural heart failure caregivers

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.

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Psychosocial interventions to support the mental health of informal caregivers of persons living with dementia – a systematic literature review

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.

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Psychosocial impact of Covid-19 outbreak on Italian asthmatic children and their mothers in a post lockdown scenario

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.

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Psychosocial Adjustment to Illness Scale in family caregivers of patients with Parkinson’s Disease: Spanish validation study

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.

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Psychometric Testing of the Spanish Modified Version of the Mini-Suffering State Examination

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.

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Psychometric Properties of the Multidimensional Scale of Perceived Social Support (MSPSS) Among Family Caregivers of People with Schizophrenia in China

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.

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A psychometric evaluation of the Caregiver Contribution to Self-Care of Heart Failure Index in a Thai population

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.

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Psychological Support Interventions for Healthcare Providers and Informal Caregivers during the COVID-19 Pandemic: A Systematic Review of the Literature

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.

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Psychological Impact of COVID-19 Outbreak on Families of Children with Autism Spectrum Disorder and Typically Developing Peers: An Online Survey

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. 

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Psychological Distress and Social Support Availability in Different Family Caregivers of Latinas With Breast Cancer

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.

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Psychological distress and burden of care among family caregivers of patients with mental illness in a neuropsychiatric outpatient clinic in Nigeria

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.

 

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Psychological distress and associated factors of the primary caregivers of offspring with eating disorder during the coronavirus disease 2019 pandemic

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.

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Psychiatric morbidity among informal caregivers of children suffering from intellectual developmental disorders

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. 

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PRN Medicines Management for Older People with Long-Term Mental Health Disorders in Home Care

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.

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Primary and secondary caregiver depressive symptoms and family functioning following a pediatric cancer diagnosis: an exploration of the buffering hypothesis

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.

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Prevalence of psychological disorders among caregivers of children with intellectual disabilities and motor disabilities in Shiraz

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.

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Prevalence of mental illness among parents of children receiving treatment within child and adolescent mental health services (CAMHS): a scoping review

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.

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Predictors of the one-year-change in depressiveness in informal caregivers of community-dwelling people with dementia

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.

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Predictors of Depressive Symptoms among Family Caregivers of Patients with Dementia in Java, Indonesia

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. 

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Predictors of Caregiver Strain for Parents of Children with Autism Spectrum Disorder

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.

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Predictors of Caregiver Burden in Delirium: Patient and Caregiver Factors

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.

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Predictive model of psychological distress in family caregivers of patients with cancer: a cross-sectional study

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. 

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Prediction of caregiver quality of life in amyotrophic lateral sclerosis using explainable machine learning

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.

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Predicting Quality of Life in Caregivers of Children with Cancer Within One Year Post-Diagnosis

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.

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Post‐traumatic stress symptoms in long‐term disease‐free cancer survivors and their family caregivers

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.

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A pilot randomized controlled trial of assertive treatment including family involvement and home delivery of medication for young adults with opioid use disorder

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.

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Phenotypes of caregiver distress in military and veteran caregivers: Suicidal ideation associations

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.

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Personal Loss, Parental Relationships, and Caregiving Intentions among Adult Siblings of Individuals with Mental Illness

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

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Perceived Benefits and Burdens of Participation for Caregivers of Cancer Patients in Hospice Clinical Trials: A Pilot Study

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.

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Pediatric Advance Care Planning and Families' Positive Caregiving Appraisals: An RCT

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.

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Patient and caregiver experiences of living with acute hepatic porphyria in the UK: a mixed-methods study

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.

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Parkinson’s Disease and Deep Brain Stimulation Have an Impact on My Life: A Multimodal Study on the Experiences of Patients and Family Caregivers

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.

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Parental Stress in Primary Caregivers of Children with Evidence of Congenital Zika Virus Infection in Northeastern Brazil

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.

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Parental caregiver burden and recovery of adolescent anorexia nervosa after multi-family therapy

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.

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Parent Experiences With Electronic Medication Monitoring in Pediatric Asthma Management: Qualitative Study

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.

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Pain in persons with dementia and the direct and indirect impacts on caregiver burden

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.

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Overcoming Challenges to Surrogate Decision Making for Young Adults at the End of Life

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.

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The role of thought suppression and psychological inflexibility in older family caregivers’ psychological symptoms and quality 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. 

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The role of symptom appraisal, concealment and social support in optimizing dyadic mental health in heart failure

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.

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The Role of Advance Care Planning in Cancer Patient and Caregiver Grief Resolution: Helpful or Harmful?

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.

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The relationships of job and family demands and job and family resources with family caregivers' strain

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.

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The Relationships between Health Professionals' Perceived Quality of Care, Family Involvement and Sense of Coherence in Community Mental Health Services

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.

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The relationship between positive aspects of caring, anxiety and depression in the caregivers of cancer patients: The mediational role of 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.

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The reciprocal associations between caregiver burden, and mental health in primary caregivers of cancer patients: A longitudinal study: Family functioning, caregiver burden, and mental health

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.

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The Protective Role of Social Support Sources and Types Against Depression in Caregivers: A Meta-Analysis

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.

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The potential of transformative video design for improving caregiver’s wellbeing

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.

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Needs of Informal Caregivers of Patients With Head and Neck Cancer: A Systematic Review

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.

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The need for psychological, caregiver‐centered intervention in the time of COVID‐19

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.

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The Mutual Effects of Perceived Spiritual Needs on Quality of Life in Patients with Advanced Cancer and Family Caregivers

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. 

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Multiple Caregivers, Many Minds: Family Discord and Caregiver Outcomes

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.

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Multi-family therapy for bulimia nervosa in adolescence: a pilot study in a community eating disorder service

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.

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Motivations and willingness to provide care from a geographical distance, and the impact of distance care on caregivers’ mental and physical health: a mixed-method systematic review protocol

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.

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Mortality communication and post-bereavement depression among Danish family caregivers of terminal cancer patients

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. 

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Modifiable factors associated with behavioural and psychological symptoms of dementia among patients residing at home: The impacts of patient, caregiver and environmental variables

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.

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Moderators and mediators of emotion regulation therapy for psychologically distressed caregivers of cancer patients: secondary analyses from a randomized controlled trial

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. 

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Moderator Role of Mutuality on the Association Between Depression and Quality of Life in Stroke Survivor-Caregiver Dyads

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.

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A mirror image: Experiences of informal carers caring for frail, older persons at risk from falling

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. 

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Mindfulness- and compassion-based interventions for family carers of older adults: A scoping review

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.

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mHealth-Supported Delivery of an Evidence-Based Family Home-Visiting Intervention in Sierra Leone: Protocol for a Pilot Randomized Controlled Trial

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

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Mental Health and Neurodevelopmental Disorders: Examining the Roles of Familism, Social Support, and Stigma in Latinx Caregivers

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.

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Measures of financial burden for families dealing with serious illness: A systematic review and analysis

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.

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Long-term effects of telephone-based cognitive-behavioral intervention for family caregivers of people with dementia: Findings at 3-year follow-up

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. 

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Long-Term Effect of Receiving a Family Strengths-Oriented Intervention on Family Cancer Caregiver Stress, Anxiety, and Depression Symptoms: A Longitudinal Quasi-Experimental Study

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.

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Longitudinal predictors of caregiver resilience outcomes at the end of childhood cancer treatment

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.

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The Lived Experience of Patients and Family Caregivers in Managing Pneumoconiosis

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.

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Life is different now – impacts of eating disorders on Carers in New Zealand: a qualitative study

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.

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Levels of stress and coping strategies in family caregivers who treat schizophrenic patients with risk of violent behavior

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.

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Learning to change: Transformative outcomes of programmes and activities for family caregivers of people with dementia in Taiwan

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. 

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Latent by-product of substance use: Burden of care

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.

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“Neither a wife nor a widow”: an interpretative phenomenological analysis of the experiences of female family caregivers in disorders of consciousness

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.

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Keeping Hope Possible Toolkit: The Development and Evaluation of a Psychosocial Intervention for Parents of Infants, Children and Adolescents with Life Limiting and Life Threatening Illnesses

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.

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"It Wasn't Like We Expected": Analyzing (Non-)Participation of Family Caregivers of People With Dementia in Sports Activities From Different Perspectives

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.

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Involving families in psychiatric treatment and rehabilitation

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.

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Involvement in self‐care and psychological well‐being of Spanish family caregivers of relatives with dementia

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.

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Investigation of the effects of interventions made according to the Progressively Lowered Stress Threshold Model on the care outcomes of Alzheimer patients and their families: a randomized clinical trial

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.

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Interventions for Family Members and Carers of Patients with Borderline Personality Disorder: A Systematic Review

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.
 

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Internet-Based Cognitive Behavioral Therapy for Informal Caregivers: Randomized Controlled Pilot Trial

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

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Intergenerational caring: a systematic literature review on young and young adult caregivers of older people

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.

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Interaction of caregiver-expressed emotions and neuropsychiatric symptoms in persons with dementia: a longitudinal cohort study

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.

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The Interaction Between Hematological Cancer Patients and Family Caregivers and Their Life Changes

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.

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Informal Family Caregiving at the End of Life: A Discursive Analysis

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.

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Informal carers in severe mental health conditions: Issues raised by the United Kingdom SARS-CoV-2 (COVID-19) Pandemic

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.

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Informal caregiving in schizophrenia: correlates and predictors of perceived rewards

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.

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Informal Caregiving in Amyotrophic Lateral Sclerosis (ALS): A High Caregiver Burden and Drastic Consequences on Caregivers’ Lives

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.

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Informal Caregiving and Strains: Exploring the Impacts of Gender, Race, and Income

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. 

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Informal Caregiving and All-Cause Mortality: A Meta-Analysis of Longitudinal Population-Based Studies

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. 

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Informal caregivers’ quality of life and management strategies following the transformation of their cancer caregiving role: A qualitative systematic review

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. 

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Informal Caregivers' Well-Being at the Transition to Caregiving

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.

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Informal Caregivers in Amyotrophic Lateral Sclerosis: A Multi-Centre, Exploratory Study of Burden and Difficulties

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.

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Informal caregivers during the COVID-19 pandemic perceive additional burden: findings from an ad-hoc survey in Germany

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.

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Informal caregiver well-being during and after patients’ treatment with adjuvant chemotherapy for colon cancer: a prospective, exploratory study

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. 

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Informal care and the impact on depression and anxiety among Swedish adults: a population-based cohort study

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.

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The influencing factors and coping styles of mental health stress responses of stroke 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. 

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Influences of Work and Family Spillover on Filial and Sandwiched Caregivers' Psychological Well-Being

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.

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Influence of a Child’s Cancer on the Functioning of Their Family

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.

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An Individual Cognitive Stimulation Therapy App for People With Dementia and Their Carers: Protocol for a Feasibility Randomized Controlled Trial

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

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Impacts of COVID‐19 on caregivers of childhood cancer survivors

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.

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Impact of Social Isolation on People with Dementia and Their Family Caregivers

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. 

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Impact of sensitization of family caregivers upon treatment compliance among geriatric patients suffering from elder abuse and neglect

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. 

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Impact of relative mental illness on caregivers

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.

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The impact of ovarian cancer on individuals and their caregivers: A qualitative analysis

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.

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The Impact of COVID-19 Quarantine on Patients With Dementia and Family Caregivers: A Nation-Wide Survey

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 bot