Psychological impact

Background: There is a need to improve the quality of communication between clinicians and parents of young patients with atopic eczema (AE).

Objective: To create a tool to measure the suffering that caregivers experience in association with their child's AE (Caregiver Pictorial Representation of Illness and Self-Measure, Caregiver-PRISM), assess the validity and reliability, and identify factors associated with caregiver suffering.

Methods: Caregiver-PRISM was administered to 45 parents of patients from an AE outpatient service (Padua, Italy).

Results: Caregiver-PRISM had a good test-retest reliability (r = 0.85; t7 = 4.13; p < 0.05), content validity and construct validity when used in parents of AE children. Parents with a less positive family affective climate, higher education, or with children following a diet experienced higher suffering associated with their child's AE, demonstrated by lower Caregiver-PRISM scores (p < 0.05).

Conclusion: Our results support the use of Caregiver-PRISM in parents of AE patients to assess suffering associated with patients' illness. 

Epidermolysis Bullosa (EB) is a group of rare genetic disorders resulting in skin fragility and other symptoms. Commissioned by DEBRA International and funded by DEBRA Norway, this evidence-bases guideline provides recommendations to optimise psychosocial wellbeing in EB.An international multidisciplinary panel of social and health care professionals (HCP) and people living with EB was formed. A systematic international literature review was conducted by the panel following the Scottish Intercollegiate Guidelines Network (SIGN) methodology. The resulting papers underwent systematic selection and critique processes. Included papers were allocated to 6 different outcome groups to allow data synthesis and exploration: quality of life, coping, family, wellbeing, access to HCP and pain. Based on the evidence in those papers, recommendations were made for individuals living with EB, family and caregivers and HCP working in the field.Few studies have investigated interventions and which factors lead to better outcomes, but general recommendations can be made. EB is a complex disease impacting enormously on every aspect of psychosocial life. People and families living with EB need access to multidisciplinary support, including psychological guidance, in order to improve quality of life and psychosocial wellbeing. Interventions should stimulate social participation to prevent isolation. People with EB and their families should be able to access a supportive network. HCP should be well supported and educated about the complexity of EB. They should work collaboratively with those around the individual with EB (e.g. schools, employers etc.) to provide psychosocial opportunity and care.Attention should be paid to the psychosocial impact of EB as well as physical needs. Directions for research are indicated. 

Background: Little is known about the provision of care coordination to children with medical complexity (CMC) and their families in Japan. The aim of this study was to describe provision of care coordination and explore the factors associated with quality of care coordination for Japanese CMC and their families.

Methods: We used an exploratory cross-sectional study design. Participants were recruited at a children's hospital located in one prefecture, Japan. Primary caregivers raising children aged between <1 and 20 years and receiving reimbursements for their home-based medical care at a children's hospital were eligible to participants in this study. The study examined the relationship between parents' ratings of care coordination as 'adequate,' 'inadequate' or 'not received' and characteristics of children, parents, and families.

Results: Ninety-nine parents caring for CMC were included in the analysis. Of those, 22.2% reported their child had a care coordinator. Caregivers were divided into three groups depending on the quality of care coordination: Group 1 reported adequate care coordination; Group 2 reported inadequate care coordination; and Group 3 had no need for care coordination. We compared the socio-demographics of children, parents and families, their service use and the health-related quality of life (HR-QOL) and caregiver burden scores of parents across the three groups. The parents' free time, access to timely care for children and service satisfaction were positively associated with adequate care coordination for CMC and their families.

Conclusions: Providing adequate care coordination for CMC and their families is essential for access to timely services and more positive psychological health of parents. High quality care coordination for CMC and their families is urgently needed in Japan.

Background: Although "late effects" connotes experiencing effects later in life, they can emerge immediately after active treatment. The effects that survivors experience have been reported but rarely from the point of view of the survivors regarding their life after treatment.

Objective: To examine the perceived late effects of pediatric cancer on survivors and their self-identified primary support persons in order to understand the multifaceted nature of living after a pediatric cancer diagnosis.

Methods: Using a pragmatic interpretive phenomenology approach, 10 survivors of pediatric cancer (aged 21-28 years) and 9 of their support persons (aged 23-73 years) participated, completing background questionnaires and semistructured, one-on-one interviews. Interview transcripts were analyzed thematically.

Results: Both survivors and support persons acknowledged that survivors experienced negative physical and cognitive health outcomes that require follow-up care. Survivors acknowledged that their cancer experience and residual effects have changed the trajectory of their lives.

Conclusions: Research on young adult survivors of pediatric cancer and the residual/late effects and emotional outcomes they experience is warranted. Longitudinal research can aid in understanding how effects develop or worsen over time.

Implications for Practice: The findings of this study support The Children's Oncology Group Long-term Follow-up Guidelines for practitioners. As the frontline caring for these individuals and families, nurses' involvement in transitional care out of treatment is necessary. Continued involvement and understanding of long-term pediatric cancer survivorship for nurses are also imperative for continuity for survivors and families.

Background: Moral distress is an important and well-studied phenomenon among nurses and other healthcare providers, yet the conceptualization of parental moral distress remains unclear.

Objective: The objective of this dimensional analysis was to describe the nature of family moral distress in serious pediatric illness.

Design and methods: A dimensional analysis of articles retrieved from a librarian-assisted systematic review of Scopus, CINAHL, and PsychInfo was conducted, focusing on how children, parents, other family members, and healthcare providers describe parental moral distress, both explicitly through writings on parental moral experience and implicitly through writings on parental involvement in distressing aspects of the child’s serious illness.

Ethical considerations: To promote child and family best interest and minimize harm, a nuanced understanding of the moral, existential, emotional, and spiritual impact of serious pediatric illness is needed. The cases used in this dimensional analysis come from the first author’s IRB approved study at the Children’s Hospital of Philadelphia and subsequent published studies; or have been adapted from the literature and the authors’ clinical experiences.

Findings: Three dimensions emerged from the literature surrounding parent moral distress: an intrapersonal dimension, an interpersonal dimension, and a spiritual/existential dimension. The overarching theme is that parents experience relational solace and distress because of the impact of their child’s illness on relationships with themselves, their children, family, healthcare providers, their surrounding communities, and society.

Discussion: Elucidating this concept can help nurses and other professionals understand, mitigate, or eliminate antecedents to parental moral distress. We discuss how this model can facilitate future empirical and conceptual bioethics research, as well as inform the manner in which healthcare providers engage, collaborate with, and care for families during serious pediatric illness.

Conclusion: Parent moral distress is an important and complex phenomenon that requires further theoretical and empirical investigation. We provide an integrated definition and dimensional schematic model that may serve as a starting point for future research and dialogue.

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.

Background: Severe malaria in children is often associated with long-term behavioural and cognitive problems. A sizeable minority of children go on to experience repeated malaria due to the high transmission and infection rates in the region. The purpose of this study was to explore caregivers' experiences of parenting a child with a history of severe malaria followed by repeated episodes of uncomplicated malaria in comparison to healthy community children.

Methods: Thirty-one caregivers were enrolled in the study. These included caregivers of children previously exposed to severe malaria and who had experienced repeated uncomplicated malaria attacks (SM with RMA, n = 15), caregivers of children exposed to severe malaria who did not experience repeated episodes (SM, n = 10), and caregivers of healthy community children (CC, n = 6) were purposively selected.

Results: Thematic-content analysis generated eight areas of concern, six of which were noted only by caregivers of children with SM or SM with RMA: (1) a sense of helplessness; (2) challenges with changes in behaviour; (3) responses to a child's behaviour; (4) family life disruptions, including breakdown of relationships and inadequate male-spouse involvement in child care; (5) disagreements in seeking healthcare; (6) societal burden; and two by caregivers of children with SM, SM with RMA and also CC; (7) concern about academic achievement; and, (8) balancing work and family life.

Conclusions: The study findings suggest that severe malaria, especially when followed by repeated malaria episodes, affects not only children who have the illness but also their caregivers. The effects on caregivers can decrease their social functioning and isolate them from other parents and may disrupt families. Interventions to support caregivers by counselling the ongoing problems that might be expected in children who have had severe malaria and repeated episodes of malaria, and how to manage these problems, may provide a way to improve behavioural and mental health outcomes for those children and their caregivers.

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.

Background: Worldwide, sickle cell disease is recognized as one of the major causes of morbidity and mortality. Caregivers and patients with such chronic illnesses experience economic, physical, social and psychological distresses which may lead to chronic sorrow. Chronic sorrow is viewed as a normal reaction to loss, however it can progress to a pathological state such as depression if the coping styles are ineffective. Therefore, the aim of this study was to explore the existence of chronic sorrow, triggers and coping with grief related feelings among caretakers of children with sickle cell disease.

Methods: A descriptive qualitative study was conducted. Twelve in-depth interviews were conducted with eligible participants who were purposively selected. Deductive thematic analysis methods were used for data analysis.

Results: Many (9 out of 12) of the caretakers experienced chronic sorrow. The grief related feelings were triggered by health worker related, disease related and support related factors. Caretakers used both external and internal coping strategies. External support was derived from community, family and health facility. Internal coping strategies were behavioral and cognitive.

Conclusion: Caretakers of children with sickle cell disease experienced chronic sorrow and employed both internal and external coping strategies to deal with it, which could be either effective or ineffective. This study recommends that health workers should routinely screen for chronic sorrow among caretakers of children with sickle cell disease and assist caretakers to strengthen effective coping strategies to ameliorate the negative effects of chronic sorrow.

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. 

Background: It is highly important for healthcare professionals to give discharge education to families to increase their knowledge of gastrostomy care and complications and to inform them about the correct behaviors. The purpose of the present descriptive pretraining and posttraining evaluation study was to investigate the effects of a standardized, evidence-based discharge education program prepared for children with gastrostomy tubes on the caregivers' knowledge, anxiety levels, and caregiving burden.

Methods: The primary caregivers of children with a gastrostomy tube (n = 30) were interviewed on the first day of the education program and the first week and third month after the program, and a pretest/posttest, the Zarit Caregiver Burden Scale and the State-Trait Anxiety Inventory were applied. Complications were determined by assessing the number of unplanned clinic visits and complications in the study group compared with the historical control group (historical comparison; n = 30).

Results: The study revealed that the knowledge levels of mothers increased in the first week and third month after training, and their caregiving burden and state-trait anxiety levels significantly decreased. Although some complications arising from the enteral nutrition process were observed, it was found that the complications were fewer, and the difference was statistically significant compared with the group that did not receive the standardized, evidence-based discharge education program.

Conclusion: The standardized education program should be recommended because caregivers managed the home care process more successfully, and the stress, anxiety, and difficulties experienced during homecare decreased. 

Lack of access to services and support is an important issue for people with autism, but in low- and middle-income countries there is a lack of data on this problem. The aims of this study were to describe the challenges and priorities, identify barriers to care, and map stigma among families of individuals with autism in Latin America. This survey was undertaken by the Red Espectro Autista Latinoamerica network, a coalition of researchers/clinicians from six Latin American countries; it comprised 2942 caregivers of children with autism from Brazil, Argentina, Chile, Uruguay, Venezuela, and the Dominican-Republic, who completed the Spanish/Portuguese version of the Caregiver Needs Survey. The survey showed that the main priorities were greater community awareness and improvements in education. The main barriers to care were waiting lists (50.2%), treatment costs (35.2%), and lack of specialized services (26.1%). Stigma experienced by families was frequent: one-third reported feeling discriminated against and helpless for having a child with autism, 48.8% reported some type of financial problem, 47.4% had to reduce work hours, and 35.5% had to stop working because of their child's autism. This survey describes the main needs/challenges faced by individuals with autism in Latin America, helping to build data-driven strategies at a national/regional level. Approximately 6 million individuals with autism spectrum disorder live in Latin America. In order to strengthen autism spectrum disorder research collaborations and awareness in the region, the Latin American Autism Spectrum Network (Red Espectro Autista Latinoamerica) was constituted in 2015, comprising researchers and clinicians from the following six countries: Brazil Argentina, Chile, Uruguay, Venezuela, and the Dominican Republic. This first multisite study from the Red Espectro Autista Latinoamerica network aims to describe the challenges and priorities to identify barriers to care and to map stigma among families of individuals with autism spectrum disorder living in Latin America. A total of 2942 caregivers from these six countries completed an online survey showing that the main priorities were greater community awareness and improvements in the educational system for individuals with autism spectrum disorder. In addition to that, the main barriers to care were related to lack of structure, mainly waiting lists (50.2%), high treatment costs (35.2%), and lack of specialized services (26.1%). Stigma experienced by families was frequent: one third reported feeling discriminated against and helpless for having a child with autism spectrum disorder. Also, 48.8% of the caregivers declared financial problems, 47.4% of them had to cut down work hours, and 35.5% had to leave their jobs because of their child's autism spectrum disorder. This is a pioneer study providing a description of the needs and challenges faced by families affected by autism spectrum disorder in Latin America, helping to build data-driven strategies at the national and regional levels. 

The rapidly increasing number of cases of Zika virus and limited understanding of its congenital sequelae (e.g., microcephaly) led to stories of fear and uncertainty across social media and other mass communication networks. In this study, we used techniques generic to netnography, a form of ethnography, using Internet‐based computer‐mediated communications as a source of data to understand the experience and perceptions of families with infants diagnosed with Zika‐related microcephaly. We screened 27 YouTube™ videos published online between October 2015 and July 2016, during which the Zika epidemic started, peaked, and declined. We identified three themes: (a) experiencing the news of a diagnosis of Zika‐associated microcephaly; (b) experiencing feelings and expectations of the ‘imperfect’ child; and (c) seeking to understand microcephaly to care for the child. We found that families experienced distressing feelings of shock, sadness, hopelessness, and pain, while dealing with emerging and sometimes conflicting information being transmitted by news outlets, uncertainty about the child's health, and healthcare providers’ lack of clarity to guide the family members. The ‘unknown’ factor of ZIKA was an additional stressful factor in the experience of the families.

Care guidelines for Duchenne/Becker muscular dystrophy (DBMD) include recommendations for assessment of caregivers of patients with DBMD followed by proactive psychosocial interventions. To inform clinical assessment, this study described appraisals of psychosocial needs and caregiving facilitators of mothers of individuals with DBMD. Two hundred and five mothers completed an online survey. More than 50% endorsed unmet needs for managing uncertainty about the future and managing DBMD fears. Higher levels of unmet need were associated with less disease progression/earlier stage of DBMD (rho = -0.166 p = 0.02). Twenty-one percent regularly used respite care and 57% worried about allowing others to care for their child. Highly-endorsed care facilitators included partner relationships (63%), child's approach to life (59%), and family relationships (49%). Our findings highlight the importance of psychological and social support for caregivers. Starting when children are young, clinicians should assess caregivers' unmet psychological needs, particularly uncertainty and fear. Exploring needs and facilitators may allow clinics to target and customize interventions that build upon existing strengths and supports. Our findings have implications for efforts to promote early diagnosis and newborn screening, in that increased needs in mothers of younger children should be anticipated and built into counseling. Further research can assess whether and how unmet needs change as new therapies become available.

Objective: The current study evaluated perceived barriers to care for parents of children with cancer and the mediating effect of illness uncertainty (IU; uncertainty from the ambiguity or unpredictability of the illness) on the relationship between barriers and parental psychological distress. We hypothesized that greater barriers to care would be related to higher levels of IU and, in turn, higher anxiety, depression, and posttraumatic stress symptom (PTSS) ratings.

Methods: As part of an ongoing study of family adjustment to pediatric cancer, 145 caregivers of children diagnosed with cancer completed questionnaires assessing barriers to care, parent IU, and anxious symptoms, depressive symptoms, and PTSS. Time since cancer diagnosis ranged from 1 to 12 months.

Results: Three mediation models assessed IU as a mediator between barriers to care and anxious symptoms, depressive symptoms, and PTSS, controlling for annual income. IU significantly mediated the relationship between barriers to care and depressive symptoms (B = -.03, SE = .02; 95% CI [-.08, -.01]) and to PTSS (B = -.15, SE = .10; 95% CI [-.38, -.03]). The mediation model was not significant for anxious symptoms.

Conclusion: Experiencing barriers to obtaining treatment for their child with cancer is a significant risk factor for symptoms of depression and PTSS among parents. Specifically, greater barriers to care is significantly associated with IU, a well-established precursor to distress in this population. Interventions targeting IU may help ameliorate distress within the context of unmodifiable barriers to care.

Background: 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. 

Aim: To gain insight into the post-discharge experiences of parents in relation to the adequacy of preparation for caring for extremely premature infants at home.

Method: A narrative approach was drawn on to facilitate data collection, through face-to-face semi-structured interviews with 14 parents of extremely premature infants.

Findings: Constant comparative analysis was used to allow the emergence of five key research themes - emotional and mental health of parents, uncertain outcomes, ongoing health needs of the baby, educational needs of health professionals, and parental support and preparation for transition home.

Conclusion: Parental experience of being discharged home with a premature baby can be emotionally challenging and necessitates a range of support mechanisms to help them to cope with this period of transition. Health professionals can direct parents to appropriate counselling services, resources and peer support groups. Tailored education is needed for community-based health professionals, such as health visitors, to equip them to support parents practically and emotionally during the transition home and beyond. In addition, health professionals can learn much from parents about what is needed to support them.

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.

Caring for a child with a chronic condition has received considerable attention in the pediatric health literature. Today, approximately 1 out of 5 North American children are diagnosed with a chronic condition that requires parents to become caregivers and advocates. Although advocacy is regarded as a significant aspect to parental caregiving, more research is needed to better define this oversimplified and misrepresented concept in clinical practice and research. Subsequently, we interviewed 35 parents of children diagnosed with complex chronic conditions. Within our analysis, we identified three themes that elaborate upon how parental advocacy is socially constructed through communication behaviors and partnerships with other people (e.g., medical professionals, family, school educators). We also discuss the emotional side of advocacy, and proffer suggestions to practitioners who work with parents to form collaborative care teams.

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.

Background: People with autism spectrum disorders (ASD) and people with intellectual disabilities (ID) are stigmatized, and therefore discriminated against worldwide and, on many occasions, this stigma and discrimination are expanded to include their family caregivers. The main objective of this research was to examine the consequences of perceived discrimination on family caregivers of children with ASD and children with ID.

Methods: The sample consisted of 109 Spanish caregivers of children with ASD and 83 caregivers of children with ID. They completed four questionnaires: Multidimensional Perceived Discrimination Scale, Affiliate Stigma Scale, Social Support Questionnaire and Rosenberg Self-Esteem Scale.

Results: Using path analysis, we found support for a model in which personal discrimination perceived by caregivers was positively associated with affiliate stigma, which, in turn, was negatively related to caregivers' self-esteem. The model also shows the total mediational role of affiliate stigma in the association between perceived discrimination and self-esteem and the partial mediational role that social support plays in the association between perceived discrimination and caregivers' self-esteem.

Conclusions: Caregivers' perceived discrimination negatively influences caregivers' self-esteem, but this relationship is mediated by both affiliate stigma (totally) and social support (partially). These results have theoretical and practical implications and may contribute to improving the quality of life of parents of children with ASD and ID that in turn would result in an improvement of the quality of life of their children.

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.

Background: Historically, research exploring the impact of having a child with an Intellectual Disability (ID), has focussed exclusively on mothers. The present study aimed to investigate fathers’ experiences of parenting a child with Down's syndrome (DS), their contributions, influences on family functioning and inclusion in their child's support provision.

Method: Semi‐structured interviews were conducted with 15 fathers. Interviews were analysed using Grounded Theory (GT).ResultsFathers’ adjustment appeared to be on a fluid trajectory with three key categories influencing this: “Accommodating the Child,” “Adapting the Parental/Spousal Role” and “Adapting Society.”

Conclusions: The accounts uncovered fathers’ adjustment trajectory to parenting a child with DS, concluding that despite practical and emotional challenges, fathers employed strategies to achieve positive adjustment. Fathers identified the need for services to recognize their role and involve them in their child's support provision. Implications for clinical practice and future research are discussed.

Objective: to describe the experience of the family management of an adolescent with sickle cell disease.

Method: case study, which used the theoretical model of the Family Management Style Framework (FMSF). Data was collected through interviews with the mother and documental analysis and, previously, being submitted to hybrid thematic analysis.

Results: the family defines that they are adapted to the situation. The management behaviors are shaped according to the unpredictability of the disease, which, consequently lead to a "fighting" management style.

Conclusion: the mother is the main caregiver of the adolescent, is overloaded, and presents difficulties regarding the therapeutic regimen. Mother and daughter are afraid of the disease, which contributes to the low self-esteem of the adolescent, limiting it in the performance of activities, and both are with impaired quality of life.
 

Background: Caring for a child with a neurodisability (ND) impacts the financial decisions, relationships and well-being of family members, but evidence on the economic trajectories of families throughout the life course is missing.

Methods: Using data from the Panel Study of Income Dynamics, we tracked the families of 3317 children starting 5 years before childbirth until the child reached 20 years of age. We used regression and latent growth curve modelling to estimate trajectories of poverty and economic hardship over time.; Results: Families with a child with an ND had higher rates of poverty and economic hardship prior to childbirth and persistently over time. Analysis uncovered five latent trajectories for each indicator. After controlling for family and caregiver characteristics that preceded the birth of the child, raising a child with an ND was not associated with a unique trajectory of poverty. Families raising a child with an ND were however more likely to experience persistent economic hardship.

Conclusions: The study establishes descriptive evidence for how having a child with an ND relates to changes in family economic conditions. The social and economic conditions that precede the child's birth seem to be driving the economic inequalities observed later throughout the life course. 

Case: Juanita is a 13-year-old non-verbal Latina girl with autism spectrum disorder, moderate intellectual disability, and a seizure disorder whose aggressive behaviors toward her parents have significantly worsened over the past few months.Juanita's monolingual Spanish-speaking parents are here today for medication management at her primary care clinic. The parents report that Juanita pinches them, pulls their hair, and hits her head with her fists. Her aggression toward them is usually triggered by feelings of frustrations, leaving her parents feeling like they have to walk on eggshells around her and have led to differing parenting styles. Her father reports that he tries to avoid getting her upset and prefers to watch TV with her, whereas her mother takes on the day-to-day caretaking. Although he wants to take a more active role in parenting Juanita, when he tries, Juanita becomes more aggressive and reacts violently toward him. During the visit, Juanita keeps her eyes downcast, is withdrawn, and some strain is noted between her parents. While speaking to them, Juanita's mother chimes in and reports that she considers herself the primary caregiver and the one who knows her daughter the best. She often dismisses Juanita's father's reporting, saying that "he doesn't know what really is going on." When Juanita is taken to the restroom by her mother, her father tearfully reports that he feels that it may be best for everyone that he leaves the family because of Juanita's worsening aggression toward him and the toll it is taking on his marriage. How would you approach her management?

This study explored family caregiver experiences of children with an intellectual disability in a rural South African day-care centre. The family caregivers (N = 15; mothers = 60%; age range = 35 to 68 years) completed in-depth interviews regarding their experiences providing care to children with intellectual disability. Data collection and analysis was done using phenomenological methods. The following themes emerged to characterise the family caregiver experiences: deeper understanding of intellectual disability; disability disclosure conditions; and social and economic support needs. Family support emerged as an important factor in the relationship between caregivers' psychological stress and well-being.

Background: The impact of pediatric oncology is psychosocially and physically profound. Children and their families have problems coping with the stresses of treatment, surgery, chemotherapy, and radiation. However, qualitative research incorporating the phenomenological experiences of children and their caregivers and professionals dealing with such cases in explaining the fabrics of trauma they handle especially in Indian socio-cultural set up is needed. Purpose: To study the needs and challenges faced by children with cancer and their families and professionals using Focused Group discussions (FGD) approach.

Methods: A total of 64 participants participated across eight FGDs: 4 FGDs with parents of children with ALL (n=31); 1 FGD with professionals working in the field of cancer (n=10) and 3 FGDs with children with ALL (n= 23).

Results: Three major categories of information emerged during analyses: (1) Needs and challenges faced by the participants; (2) Factors moderating influence of challenges; (3) Technical suggestions by experts highlighting ways to address challenges. 5 Domains of challenges emerged namely: Lack of awareness, Cognitive problems, psychosocial issues, physical problems and socio emotional & behavioral problems. Discussion on the emerged themes and sub-themes has been done in the light of global literature, existing theoretical frameworks, and cultural scenario of India.

Conclusion: No longer considered an inevitably fatal disease, childhood cancer nonetheless presents many challenges for children and families. An effective and culturally sensitive psychosocial support for patients and their families during and post treatment, in addition to medical therapy, is strongly recommended.

Objectives: A diagnosis of celiac disease (CD) requires individuals to adopt a strict gluten-free diet. As children with CD must rely on their caregivers for guidance and support with managing the gluten-free diet, CD may challenge the caregiver's emotional and social well-being. The primary objective of this mixed-methods systematic review was to synthesize research investigating the impact of CD on caregiver's well-being.

Methods: Five databases were systematically searched from 1990 to 2018 to identify all empirical studies that assessed well-being in caregivers of children (0-18 years) with CD. Qualitative and quantitative data were extracted separately before being integrated to explore key themes across the studies. 

Results: Twelve studies were identified that explored the well-being of caregivers of children with CD (3 qualitative, 9 quantitative), reporting on 665 caregivers. The quality of evidence was limited across studies. Synthesis of results revealed 3 themes (Caregiver Responsibility, Caregiver Well-Being and Concern for Child's Health, Implications for the Family) describing the impact of a child with CD on caregiver well-being.

Conclusions: Caregivers of children with CD may experience difficulties that impact their well-being; specific difficulties identified included the impact of caregivers' social activities, finances, and anxiety. The findings detailed in this review point toward factors that may guide health care personnel to provide support for the caregivers of children with CD.

Objectives: Aims were to (1) determine whether the associations between parent psychological functioning and adjustment outcomes of childhood cancer survivors (CCS) were mediated by the parent-child relationship and (2) examine possible differences in pathways for CCS and healthy peers.

Method: The study included CCS (n = 206), healthy peers (n = 132), and their primary caregivers. Youth (8-21 years) reported on the quality of the parent-child relationship and on their positive and negative adjustment outcomes. Parents reported on their own distress, posttraumatic growth, quality of the parent-child relationship, and their child's positive and negative adjustment outcomes. Two mediation models were tested, first examining youth-reported adjustment as the outcome and second examining parent-reported youth adjustment. Differences between model path coefficients of CCS and healthy peers were assessed by multigroup analyses.

Results: In the youth-reported model, the parent-child relationship mediated the relation between parental distress and adjustment, with more care leading to better youth-reported adjustment outcomes and more overprotection leading to poorer adjustment outcomes. In the parent-reported model, relational frustration and attachment mediated the link between parental distress/growth and parent-reported youth adjustment, with more relational frustration and less attachment relating to poorer youth adjustment outcomes. Multigroup analyses revealed no differences in model path coefficients between CCS and healthy peers.

Conclusions: Parental distress and the parent-child relationship likely play an important role in both youth- and parent-reported adjustment, and associations among these constructs do not differ between CCS and healthy peers. Families with less optimal parental functioning may benefit from interventions improving the quality of parent-child interactions.

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.

Background: Many rare diseases of childhood are life-threatening and chronically debilitating, so living with a rare disease is an on-going challenge for patients and their families. MPS is one of a range of rare inherited metabolic disorders (IMDs) that come under category 3 of life-limiting conditions, where there is no curative treatment available at present. Although the study of rare diseases is increasingly novel, and of clinical importance to the population, the lack of empirical data in the field to support policy and strategy development is a compelling argument for further research to be sought.

Methods: This qualitative hermeneutic phenomenological study explored and interpreted Irish parents' experiences of living with and caring for children, adolescents and young adults with MPS and the impact of these diseases on their day to day life. A purposively selected sample of parents' attending the Irish National Centre for Inherited Metabolic Disorders was invited to participate in serial in-depth interviews.

Results: A total of eight parents' (n = 8) of children with a range of MPS disorders aged from 6 months to 22 years (MPS I Hurler syndrome, Scheie syndrome), MPS II (Hunter syndrome), MPS III (Sanfilipo syndrome) and MPS VI (Maroteaux-Lamy syndrome) were interviewed at three time points over a 17 month period. The main themes identified during data analysis were described as living with MPS, living with a genetic rare disease, the stigma of a rare condition, MPS as encompassing multiple diseases, Unknown future, hospital vs. home, experience of waiting, a tough road ahead, and things in their day-to-day life with MPS. They spoke of their child's Quality of Life (QoL), their healthy children's wellbeing, and for some, the impact on their own physical and psychological wellbeing. They also reflected on issues of stigmatisation and isolation in their experience of living with a child with a rare disorder.

Conclusion: This study's findings reflect the wider literature on the impact of rare diseases, which have also indicated how caring for someone with MPS, a condition that is chronic, progressive and degenerative can impact on all dimensions of the family's life. Analysis of the findings using a hemenutic pheomenology perspecitve suggest that parents of children with MPS experience multiple cyclical movements across all five human lived existential experience, and they gradually develop ways to incorporate MPS in their day to day life. It was also evident that all the carers in this study experienced a range of uncertainties, with parents using terms such as 'no man's land' and 'future is unknown' to describe their world.

Objective: To assess the lived experience of parents whose child has suffered a stroke.

Methods: A qualitative study model was chosen, comprising in-depth interviews with parents separately or altogether. A semi-structured interview guide was used. Interviews were audio-recorded, transcribed verbatim and analysed using constant comparison and content analysis. Participant checking was performed. Thirteen families of children aged 1 month to 17 years, having suffered ischaemic or haemorrhagic arterial stroke within one to five years, were recruited. Interviews were conducted within home setting.

Results: After fourteen interviews, data saturation was met and six main narrative themes were identified, underlining a common path of stroke lived experience: brutality of diagnosis, lack of information regarding disease condition, feeling of abandonment after discharge from hospital, focus on functional recovery, late awareness of cognitive disorders, and need for psychological support and family adaptation.

Conclusion: This is the first qualitative study reporting lived experience of childhood stroke caregivers. In line with other qualitative studies exploring the feelings of parents coping with severe neurological conditions of childhood, our results advocate the need for evaluation of family centred health interventions. 

Objective: To know the experiences of family members of children with cystic fibrosis under the light of the theory of Callista Roy.

Method: Qualitative research that used the adaptation theoretical framework of Callista Roy for inductive content analysis. Fifteen family members, in a university hospital, between 23 and 63 years old, participated in the study, from September to October 2018.

Results: Two categories were elaborated: "Evaluation of stimuli" and" Evaluation of behaviors". The first has three subcategories: "focal", "contextual" and "residual". And the second, four subcategories: "physiological domain", "self-concept","role function" and "interdependence".

Final Considerations: During the evaluation of stimuli, work overload and stress were identified as focal stimuli. Regarding contextual stimuli, it was noticed that the social life of caregivers was prejudiced. As for residual stimuli, the fear of loss is constant, and it appears that the emotional aspect of family members is the most affected comparing with physical exhaustion.

Background: Autism spectrum disorders (ASDs) are characterised by impairments in communication and reciprocal social interaction. These impairments can impact on relationships with family members, augment stress and frustration, and contribute to behaviours that can be described as challenging. Family members of individuals with ASD can experience high rates of carer stress and burden, and poor parental efficacy. While there is evidence to suggest that individuals with ASD and family members derive benefit from psychological interventions designed to reduce stress and mental health morbidity, and enhance coping, most studies to date have targeted the needs of either individuals with ASD, or family members. We wanted to examine whether family (systemic) therapy, aimed at enhancing communication, relationships or coping, is effective for individuals with ASD and their wider family network.

Objectives: To evaluate the clinical effectiveness and acceptability of family therapy as a treatment to enhance communication or coping for individuals with ASD and their family members. If possible, we will also seek to establish the economic costs associated with family therapy for this clinical population.; Search Methods: On 16 January 2017 we searched CENTRAL, MEDLINE, Embase, 10 other databases and three trials registers. We also handsearched reference lists of existing systematic reviews and contacted study authors in the field.; Selection Criteria: Randomised controlled trials (RCTs) and quasi-RCTs investigating the effectiveness of family therapy for young people or adults with ASD or family members, or both, delivered via any modality and for an unspecified duration, compared with either standard care, a wait-list control, or an active intervention such as an alternative type of psychological therapy.

Data Collection and Analysis: Two authors independently screened each title and abstract and all full-text reports retrieved. To enhance rigour, 25% of these were independently screened by a third author.; Main Results: The search yielded 4809 records. Of these, we retrieved 37 full-text reports for further scrutiny, which we subsequently excluded as they did not meet the review inclusion criteria, and identified one study awaiting classification.

Authors' Conclusions: Few studies have examined the effectiveness of family therapy for ASD, and none of these are RCTs. Further research studies employing methodologically robust trial designs are needed to establish whether family therapy interventions are clinically beneficial for enhancing communication, strengthening relationships, augmenting coping and reducing mental health morbidity for individuals with ASD and family members.

Background: Parents caring for children with complex and long‐term conditions at home take on responsibility for technical health‐care procedures that may cause their child distress. Little evidence exists about parents’ experience of this specific aspect of their caring role.

Aims: To explore and understand parents’ experiences of administering distressing health‐care procedures as part of caring for their child at home.

Design: An explorative qualitative study.MethodsA purposive sample of parents who were currently carrying out, or had previously carried out, health‐care procedures they thought their child found distressing was recruited. Data were collected using in‐depth interviews and analysed thematically.

Findings: Administering these procedures was not just a clinical task. That the procedures caused distress for the child meant there were additional issues to consider and address. A major issue for parents was being able to prevent or minimize their child's distress, which in turn was closely linked to parents’ own emotional discomfort in the situation. Parents also had to manage their child's physical and verbal resistance, their own emotional discomfort during the procedure, and the presence and reaction of siblings in the home. The types of support that were valued by parents included advice about managing their child's distress and resistance, occasional assistance with procedures, addressing the emotional aspects of the role, and adequate training and on‐going supervision.

Conclusion: The “added” challenges of assuming this responsibility have implications for the support of parents caring for ill children at home.

Objective: To explore the experiences, expectations, and motivations of parents/caregivers of children with otitis media who were booked to undergo tympanostomy tube insertion.

Method: A cross-sectional cohort study was conducted using semistructured interviews with 39 parents. Interviews were conducted via telephone and analyzed for key themes.

Results: Three themes emerged that incorporated a range of subthemes: (1) the impact of the child's underlying condition on the family, (2) the cues and prompts that influenced parents to seek intervention, and (3) the parents' expectations of the health-care system. The child's otitis media disrupted the day-to-day functioning of the family and the child's well-being, but despite this, the families found ways to adapt and cope. Parents were influenced by their friends, family, and medical practitioners when making treatment decisions and had differing expectations of the health-care system.

Conclusion: Parents need support during their child's illness to help with pressures placed on the family and also in making health-care decisions for their child. Clinicians should consider these issues when discussing treatment options with parents. (© The Author(s) 2019.)

This study explores the lived experience of parents whose children are deafblind and examines whether it can be considered a meaningful occupation. The number of people who are deafblind is growing (Robertson and Emerson 2010), as are the number of parent-carers, yet deafblind research traditionally follows a medical model, focusing on older people (Brennan et al. 2005). Parents whose children are deafblind have not been consulted about their own experiences, despite family-centred practice playing parents central to a child's care, and legislation and policy which aims to protect carers' needs and recognise their vital role (Department of Health 2009). This research begins to address this gap in knowledge. Interpretative Phenomenological Analysis was used to explore the experience of four parents whose children are deafblind, using semi-structured face-to-face interviews. Parents were recruited through Sense UK, with Brunel University granting ethical approval. Analysis produced five main themes alongside extracts from the interviews: The moment of diagnosis - Isn't quite what I expected, Working and self-preservation - A little bit of normality back, Learning to manage - It can be rewarding in and of itself to have a disabled child, The tough times - It's so far away from normal, and What deafblindness really means - If you have multisensory loss [it] becomes really difficult. The findings demonstrated how turbulent the parenting experience was for these parents. Traditional mothering roles were often lost, although new roles developed that could provide them with a purposeful and often fulfilling parenting experience. The findings have implications for both family centred practice and occupational science theory. Recommendations for further research include: repeat studies to strength validity longitudinal studies to capture the life-long parenting experience and action research to develop a parent-professional support group.

OBJECTIVE: Choosing between competing options (shunt or endoscopic third ventriculostomy) for the management of hydrocephalus requires patients and caregivers to make a subjective judgment about the relative importance of risks and benefits associated with each treatment. In the context of this particular decision, little is known about what treatment-related factors are important and how they are prioritized in order to arrive at a treatment preference.

METHODS: The Hydrocephalus Association electronically distributed a survey to surgically treated hydrocephalus patients or their families. Respondents rated the importance of various surgical attributes in their decision-making about treatment choice, and also indicated their preference in hypothetical scenarios involving a trade-off between potential risks and benefits of treatment. Rank-order correlations were used to determine whether certain predictor variables affected the rating of factors or hypothetical treatment choice.

RESULTS: Eighty percent of 414 respondents rated procedural risks, minimizing repeat surgery, and improving long-term brain function as being very or extremely important factors when deciding on a treatment; 69% rated the need to implant a permanent device similarly. Parent-respondents rated procedural risks higher than patient-respondents. A majority of respondents (n = 209, 54%) chose a procedure with higher surgical risk if it meant that implantation of a permanent device was not required, and respondents were more likely to choose this option if they discussed both treatment options with their surgeon prior to their initial intervention (Spearman rho 0.198, p = 0.001). Although only 144 of 384 total respondents (38%) chose a less established operation if it meant less repeat surgery, patient-respondents were more likely to choose this option compared to parent-respondents (Spearman rho 0.145, p = 0.005). Likewise, patient-respondents were more likely than parent-respondents to choose an operation that involved less repeat surgery and led to worse long-term brain function (Spearman rho 0.160, p = 0.002), an option that was chosen by only 23 (6%) of respondents overall.

CONCLUSIONS: This study is the first exploration of patient/parental factors that influence treatment preference in pediatric hydrocephalus. Procedural risks, minimizing repeat operations, and the desire to maximize long-term cognitive function appeared to be the most important attributes that influenced treatment decisions that the survey respondents had made in the past. Patients and/or their caregivers appear to see some inherent benefit in being shunt free. It appears that fear of multiple revision operations may drive treatment choice in some circumstances.

Disability in a child not only affects the child but also presents socioeconomic and psychological impacts to the child's family. This study aims to describe the service needs of caregivers of children with disabilities in the state of Penang, Malaysia, and to determine the child and family characteristics predisposing to having more caregiver needs. A cross-sectional survey was conducted between February and June 2013 among caregivers of children aged 0-12 years with disabilities registered with the Penang Department of Social Welfare. Caregivers completed a self-administered mailed questionnaire containing a 20-item Caregiver Needs Scale (CNS). Each item in the CNS was rated on a 5-point Likert scale ranging from 'help not at all needed' to 'help extremely needed'. A total of 273 surveys were available for analysis (response rate 34.0%). The CNS contained four domains. The 'Help getting Information and Services for child' domain had the highest mean score (3.61, 95% CI: 3.46, 3.77) followed by 'Help with Finances' (3.29, 95% CI: 3.13, 3.45) and 'Help Coping with child' (3.11, 95% CI: 2.97, 3.25), while the 'Help getting Childcare' domain had the lowest mean score (2.30, 95% CI: 2.13, 2.47). Multivariate regression analysis identified caregivers of younger children and with more severe disability as having more caregiver needs in all domains. Besides that, caregivers of children with learning disability needed more help getting information and help with coping. Caregivers of children with learning and multiple disabilities needed more help getting childcare compared to children with other disability. Caregivers of Indian ethnicity, who had less than a tertiary education and who themselves had medical problems needed more help with finances. The findings on caregiver needs in this study can help inform planning of family support services for children with disabilities in Penang, Malaysia.

Traditionally, family-focused care extends to parents and siblings of children with life-limiting conditions. Only a few studies have focused on the needs of grandparents, who play an important role in the families of children with illness and with life-limiting conditions, in particular. Interpretative phenomenological analysis was used as the methodological framework for the study. Seven bereaved grandparents participated in this study. Semistructured, individual, face-to-face interviews were conducted. A number of contextual factors affected the experience of bereaved grandparents, including intergenerational bonds and perceived changes in role following the death of their grandchild. The primary motivation of grandparents stemmed from their role as a parent, not a grandparent. The breadth of pain experienced by grandparents was complicated by the multigenerational positions grandparents occupy within the family. Transition from before to after the death of a grandchild exacerbated the experience of pain. These findings about the unique footprint of grandparent grief suggest the development of family nursing practice to better understand and support grandparents during the illness of a grandchild, in addition to bereavement support.

Background: Understanding the perspectives of caregivers of children with developmental disorders living in low-income countries is important to inform intervention programmes. The purpose of this study was to examine the stigma experiences, explanatory models, unmet needs, preferred interventions and coping mechanisms of caregivers of children with developmental disorders in Ethiopia.

Methods: Participants comprised caregivers (n = 102) of children with developmental disorders attending two child mental health clinics in Addis Ababa. The majority (66.7%; n = 68) had a diagnosis of intellectual disability (ID); 34 children (33.3%) had autism spectrum disorder (ASD) as their primary diagnosis. All caregivers were administered a structured questionnaire via a face-to-face interview, which included an adaptation of the Family Interview Schedule, closed questions about socio-demographic characteristics, explanatory models of illness, type of interventions used or desired and coping strategies, and an open ended question regarding the family's unmet needs.

Results: Most caregivers reported experience of stigma: 43.1% worried about being treated differently, 45.1% felt ashamed about their child's condition and 26.7% made an effort to keep their child's condition secret. Stigma did not depend on the type of developmental disorder, the child's age or gender, or on the age or level of education of the caregiver (all p > 0.05). Reported stigma was significantly higher in caregivers who had sought traditional help (p < 0.01), provided supernatural explanations for their child's condition (p = .02) and in caregivers of Orthodox Christian faith (p = .03). Caregivers gave a mixture of biomedical explanations (e.g. head injury (30.4%) or birth complications (25.5%)) and supernatural explanations (e.g. spirit possession (40.2%) or sinful act (27.5%)) for their child's condition. The biggest reported unmet need was educational provision for their child (74.5%), followed by treatment by a health professional (47.1%), financial support (30.4%) and expert help to support their child's development (27.5%). Most caregivers reported that talking to health professionals (86.3%) and family (85.3%) helped them to cope. Many caregivers also used support from friends (76.5%) and prayer (57.8%) as coping mechanisms.

Conclusions: This study highlights the stigma experienced by families caring for a child with a developmental disorder. Designing interventions appropriate for low-income settings that improve awareness about developmental disorders, decrease stigma, improve access to appropriate education and strengthen caregivers' support are needed.

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. 

Background: Patients with childhood cancer and their families frequently experience psychosocial distress associated with cancer and its treatment. We thus examined the reliability and validity of a Japanese version of the Psychosocial Assessment Tool, which was designed to screen for psychosocial risk factors among families of children with cancer.

Methods: Forward-backward translation was used to develop the Japanese version of the Psychosocial Assessment Tool. We conducted a cross-sectional study. Mothers (N = 117), who were the primary caregivers of children with cancer, completed the Japanese version of the Psychosocial Assessment Tool and other measures to establish validity. The internal consistency and 2-week test-retest reliability of the Japanese version of the Psychosocial Assessment Tool were also examined. 

Results: The internal consistency of the Japanese version of the Psychosocial Assessment Tool total score was sufficient (Kuder-Richardson 20 coefficient = 0.84); however, the subscales 'structure and resources,' 'stress reactions' and 'family beliefs' were less than optimal (Kuder-Richardson 20 coefficients = 0.03, 0.49 and 0.49, respectively). The test-retest reliability for the Japanese version of the Psychosocial Assessment Tool total score was sufficient (intraclass correlation coefficient = 0.92). Significant correlations with the criteria measures indicated the validity of the Japanese version of the Psychosocial Assessment Tool total score. The optimal cut-off score for screening mothers with high psychosocial risk was 0.9/1.0, which was associated with 92% sensitivity and 63% specificity.

Conclusions: This study indicated that the Japanese version of the Psychosocial Assessment Tool is a valid and reliable tool to screen mothers for elevated distress.

Given the vulnerability of the child psychiatric population, this study examined whether parenting a child referred to a child and adolescent psychiatry department leads to a higher risk of physical child abuse and if that risk is associated with a specific child psychopathology. The clinical sample consisted of caregivers with a six-to-11-year-old child who consulted child and adolescent psychiatry for a psychiatric assessment. The Dutch Child Abuse Potential Inventory (CAPI), socio-demographic data and child psychiatric diagnosis were collected from 59 caregivers of 59 children. Ten per cent of the sample obtained an Abuse scale score indicative of a potential risk for physically maltreating their child. Compared to a non-clinical sample, this study showed a two and a half times higher risk potential for physical child abuse in caregivers with children referred to child and adolescent psychiatry. The elevated risk was not associated with a specific child psychiatric diagnosis. The caregivers at risk were more unhappy and experienced more problems with their child, their family and with others. Results support the need for implementing a standard risk assessment for physical child abuse in a child psychiatric setting.

Objective: Caregivers of young children with chronic illnesses are at high risk for elevated levels of stress and mental health symptoms. This study examined stress and mental health symptoms as well as the socioeconomic status (SES) and home environments of a cohort of caregivers of infants and toddlers with sickle cell disease (SCD).

Methods: Forty-two caregivers of infants and toddlers (aged 1-34 months) with SCD completed the Brief Symptom Inventory (BSI) and Parent Stress Index (PSI). The Home Observation for Measurement of the Environment (HOME) was used to assess family living environments.

Results: Compared to test norms, caregivers reported high levels of situational/demographic life stress [mean difference (MD) 5.7, p = .003] and child distractibility/hyperactivity (MD 3.62, p = .001) on the PSI. However, no significant differences in psychological symptoms of distress were noted on the BSI. Caregivers scored significantly lower than norms on PSI subdomains of acceptability (MD -1.88, p = .03), competence (MD -3.11, p = .002), depression (MD -3.94, p < .001), and the overall parent domain (MD -12.55, p = .005). Significant correlations were found between PSI scores and the HOME and between SES and the HOME.

Conclusion: Caregivers of infants and toddlers with SCD experience elevated levels of life stress but, in turn, endorse high acceptance of their child and self-competence in parenting. Although life stress may be high in this population, symptoms of psychological distress were not identified. Caregivers reporting elevated life and illness-specific stressors may benefit from environmental supports and interventions. 

Objective: To quantify psychosocial risk in family caregivers of children with medical complexity using the Psychosocial Assessment Tool (PAT) and to investigate potential contributing sociodemographic factors.

Design: Cross-sectional study.

Setting: Family caregivers completed questionnaires during long-term ventilation and complex care clinic visits at The Hospital for Sick Children, Toronto, Ontario, Canada.; Patients: A total of 136 family caregivers of children with medical complexity completed the PAT questionnaires from 30 June 2017 through 23 August 2017. 

Main Outcome Measures: Mean PAT scores in family caregivers of children with medical complexity. Caregivers were stratified as 'Universal' low risk, 'Targeted' intermediate risk or 'Clinical' high risk. The effect of sociodemographic variables on overall PAT scores was also examined using multiple linear regression analysis. Comparisons with previous paediatric studies were made using T-test statistics.

Results: 136 (103 females (76%)) family caregivers completed the study. Mean PAT score was 1.17 (SD=0.74), indicative of 'Targeted' intermediate risk. Sixty-one (45%) caregivers were classified as Universal risk, 60 (44%) as Targeted risk and 15 (11%) as Clinical risk. Multiple linear regression analysis revealed an overall significant model (p=0.04); however, no particular sociodemographic factor was a significant predictor of total PAT scores.

Conclusion: Family caregivers of children with medical complexity report PAT scores among the highest of all previously studied paediatric populations. These caregivers experience significant psychosocial risk, demonstrated by larger proportions of caregivers in the highest-risk Clinical category. 

Context: All inpatient children receiving pediatric palliative care consults at a free-standing children's hospital.

Objectives: To explore the impact of massage therapy on pediatric palliative care patients' symptom burden and medication use pattern, to describe the impact of massage therapy on family caregiver distress, and to report on bedside nursing staff perception of massage therapy for children and their families.; Methods: A 1-time point, single-center exploratory study offering 10-minute bedside massage to children receiving palliative care and 10-minute massage to their family caregivers.

Results: A total of 135 massages were provided to children and their caregivers. Difference in child Face, Legs, Activity, Cry, Consolability scale (FLACC) score was detectable ( P < .0001) with the median (interquartile range [IQR]) before FLACC score being 2 (1-3) and after FLACC score being 0 (0-1). Difference in "as-needed" pain medication usage in the 24 hours before and after the massage was detectable ( P = .0477). Median difference in family caregiver distress with massage was -3.0 (IQR = 2.0, P < .0001). Bedside nurses (100%) reported massage to be a meaningful way to care for their families and patients.

Conclusion: Massage therapy is a potentially meaningful intervention for pediatric palliative care patients with noted impact on symptom burden, benefit to family caregivers, and acceptance by nursing staff.

Patients and families affected by various medical conditions report experiencing health-related stigma, which contributes to detrimental physical, psychological, and social outcomes. Sickle cell disease (SCD) is a genetic disorder that affects 89,000 individuals in the United States and is often associated with negative stereotypes and incorrect assumptions. The present study explored the perception of stigma as reported by caregivers of adolescents with SCD. Focus groups were conducted with 20 caregivers of patients with SCD. Focus groups were audio recorded and transcribed. The data were coded independently by two authors, and then reviewed conjointly until consensus was reached. Caregivers reported the perception of stigma in academic, medical, community, and family settings. They also reported internalized stigma including negative feelings toward having a child with SCD, feeling upset with others, and seeing negative emotions in their child due to SCD. Caregivers reported a general lack of knowledge about SCD across settings. These results demonstrated that stigma may affect individuals with SCD across multiple settings. These results also highlighted areas for intervention, with a focus on increasing communication and education toward medical providers, schools, and communities. Interventions can utilize technology, social media, and advertisement campaigns. Additionally, support groups for patients with SCD may help decrease stigma and validate patients' experiences.

Objective: to understand the experiences of family caregivers of children with Primary Immunodeficiency in view of care demands.

Methods: a qualitative research. Data collection was subsidized by an open interview with five family caregivers, and the data were analyzed using the Bardin Content Analysis technique, thematic modality. The Callista Roy's Adaptation Model of Nursing was used to interpret the data.

Results: from participants' reports, the following categories emerged: Maternity: facing adversity; Remodeling of daily life; The Social Support Network resource.

Final considerations: family caregivers experience several feelings such as anguish and low self-esteem due to the fear of losing their child and the routine of illnesses and hospitalizations, in addition to needs that are often not reached due to incompatibility with the family budget. The Social Support Network is strengthened for most caregivers, playing an essential role as a coping strategy for caregivers.

Objective: to understand the experiences of family caregivers of children with Primary Immunodeficiency in view of care demands.

Methods: a qualitative research. Data collection was subsidized by an open interview with five family caregivers, and the data were analyzed using the Bardin Content Analysis technique, thematic modality. The Callista Roy's Adaptation Model of Nursing was used to interpret the data.

Results: from participants' reports, the following categories emerged: Maternity: facing adversity; Remodeling of daily life; The Social Support Network resource.

Final considerations: family caregivers experience several feelings such as anguish and low self-esteem due to the fear of losing their child and the routine of illnesses and hospitalizations, in addition to needs that are often not reached due to incompatibility with the family budget. The Social Support Network is strengthened for most caregivers, playing an essential role as a coping strategy for caregivers.

Objectives: (1) To better outline quality of life outcomes in paediatric tracheostomy patients and their caregivers. (2) To establish whether quality of life outcomes for children are associated with those of their caregivers. (3) To establish whether quality of life outcomes were associated with the demographic and clinical variables of age, duration of time with a tracheostomy, number of comorbidities, and ventilator dependence.

Methods: Cross-sectional methodology was applied to gather quantitative data on quality of life outcomes, through PedsQL written questionnaires. These questionnaires covered social, emotional, physical and role/cognitive functioning. Caregivers also provided information on communication, worries, daily activities and family relationships. All children with a tracheostomy in situ, or recently decannulated, attending Sheffield Children's Hospital during the study period were eligible for inclusion.

Results: 25 families wished to participate, with patients ranging from 0.5 to 16.5 years (median 6.25). Both patients and caregivers attained lower scores than many other chronic diseases studied. Mean patient HRQoL was 56.2, with a physical health score of 52.4, psychosocial health score of 61.7. Caregiver HRQoL was 63.8, family functioning score was 68.1 and total family impact score was 61.6. Relative deficits were seen in caregiver social functioning (54.9), communication (56.3), worries (49.1) and daily activities (48.9), whilst role/cognitive functioning (73.8) and family relationships (79.6) subsections produced higher scores. Child psychosocial health showed moderate positive correlation (r = 0.492, p = 0.015) with both caregiver HRQoL and total family impact score. No correlation was identified between quality of life outcomes and demographic or clinical variables.

Conclusions: Disease burden appears to be particularly high for children and families with tracheostomies, especially when compared to other serious childhood disease. Lack of time and energy to complete daily activities, social isolation, worries, as well as difficulty communicating and perceived lack of understanding of their child's health were instrumental in reduced quality of life of caregivers. Anxiety about the future affected the majority of caregivers. This psychosocial impact may be lost in the busyness of delivery of medical care. We recommend provision of psychosocial support for these families as is now also recommended in other chronic childhood illness. 

Objective: To describe the strategies families report using to address the needs and concerns of siblings of children, adolescents, and young adults undergoing hematopoietic stem cell transplant (HSCT).

Methods: A secondary semantic analysis was conducted of 86 qualitative interviews with family members of children, adolescents, and young adults undergoing HSCT at 4 HSCT centers and supplemented with a primary analysis of 38 additional targeted qualitative interviews (23 family members, 15 health care professionals) conducted at the primary center. Analyses focused on sibling issues and the strategies families use to address these issues.

Results: The sibling issues identified included: (1) feeling negative effects of separation from the patient and caregiver(s); (2) experiencing difficult emotions; (3) being faced with additional responsibilities or burdens; (4) lacking information; and (5) feeling excluded. Families and health care providers reported the following strategies to support siblings: (1) sharing information; (2) using social support and help offered by family or friends; (3) taking siblings to the hospital; (4) communicating virtually; (5) providing special events or gifts or quality time for siblings; (6) offering siblings a defined role to help the family during the transplant process; (7) switching between parents at the hospital; (8) keeping the sibling's life constant; and, (9) arranging sibling meetings with a certified child life specialist or school counselor.

Conclusions: Understanding the above strategies and sharing them with other families in similar situations can begin to address sibling issues during HSCT and can improve hospital-based, family-centered care efforts. 

Caregiving stress has been associated with changes in the psychological and physical health of parents of children with cancer, including both partnered and single parents. While parents who indicate "single" on a demographic checklist are typically designated as single parents, a parent can be legally single and still have considerable support caring for an ill child. Correspondingly, an individual can be married/partnered and feel alone when caring for a child with serious illness. In the current study, we report the results from our exploratory analyses of parent self-reports of behavior changes during their child's treatment. Parents (N = 263) of children diagnosed with cancer were enrolled at 10 cancer centers. Parents reported significant worsening of all their own health behaviors surveyed, including poorer diet and nutrition, decreased physical activity, and less time spent engaged in enjoyable activities 6 to 18 months following their child's diagnosis. More partnered parents found support from friends increased or stayed the same since their child's diagnosis, whereas a higher proportion of lone parents reported relationships with friends getting worse. More lone parents reported that the quality of their relationship with the ill child's siblings had gotten worse since their child's diagnosis. Spiritual faith increased for all parents. References

Background and Objectives: Pediatric dialysis is thought to be burdensome on caregivers given their need to assume dual responsibilities of parental and medical management of their child's chronic illness. In this study, we seek to describe the experience of parental caregivers of children receiving chronic dialysis for end-stage kidney disease.

Methods: We performed semistructured interviews of primary caregivers of children with end-stage kidney disease receiving chronic peritoneal dialysis or hemodialysis for at least 8 weeks from March 2016 to April 2017 at 3 pediatric dialysis centers in the United States. We performed a thematic analysis to inductively derive and identify themes and subthemes related to positive and negative caregiver experiences.

Results: Thirty-five caregivers completed interviews. Four major themes were identified, each with several subthemes: (1) caregiver medicalization (subthemes: diagnosis and initiation, disease management, and the future), (2) emotional adjustment (initial and/or acute phase, acceptance, personal growth, and medical stress and psychological burden), (3) pragmatic adaptation (disruption, adaptation of life goals and/or sense of self, and financial impact), and (4) social adjustment (relationship opportunity, relationship risk, advocacy, family functioning, and intimate relationships). These themes and subthemes reflected a broad range of experiences from positive to severely burdensome. 

Conclusions: Caregivers of patients on dialysis report a broad range of positive and burdensome experiences. These results reveal a need for continued advocacy to support families with a child on dialysis and can be used to develop targeted measures to study and improve caregiver experience in this population. 

This was the first study to examine the experience of parents who discover their child was living with anorexia nervosa (AN), thus fulfilling a critical gap in the eating disorder literature. Gadamerian hermeneutic inquiry was the guiding philosophy and method used to investigate this topic. Dialogues with parents revealed the ambiguity inherent within discovery; the isolation, betrayal, and loss felt by parents; and the complicated family dynamics occurring during the process of discovering one's child has AN. As such, when discoveries are made, parents play a vital role in the development and functioning of the family's response to the situation. This research offers health care providers a better understanding of the difficult times parents and caregivers experience when discovering their child has AN.

This was the first study to examine the experience of parents who discover their child was living with anorexia nervosa (AN), thus fulfilling a critical gap in the eating disorder literature. Gadamerian hermeneutic inquiry was the guiding philosophy and method used to investigate this topic. Dialogues with parents revealed the ambiguity inherent within discovery; the isolation, betrayal, and loss felt by parents; and the complicated family dynamics occurring during the process of discovering one's child has AN. As such, when discoveries are made, parents play a vital role in the development and functioning of the family's response to the situation. This research offers health care providers a better understanding of the difficult times parents and caregivers experience when discovering their child has AN.

The current study aimed to evaluate the status of anxiety among caregivers of children with epilepsy and examine the associated factors.A cross-sectional study was conducted in western China, which consecutively recruited children with epilepsy in 2018. The self-rating anxiety scale (SAS) was used to assess the status of anxiety among caregivers of children with epilepsy. We collected information about aspects of sociodemographic data, disease status, attitude of caregivers towards the disease and family conditions as independent variables, using multiple linear regression to analyze factors related to the status of anxiety among caregivers.A total of 334 participants were included in the study with a response rate of 95.4% (334/350). The mean age of children with epilepsy was 6.05 ± 4.11 years. 7.2% (24/334) of patients were newly diagnosed and 55.4% (185/334) of patients presented with generalized epilepsy. A total of 25.7% (86/334) of caregivers among children with epilepsy presented the symptom of anxiety, with the scores of SAS 44.31 ± 10.558. SAS scores were negatively correlated with the children's age (B = -0.141; standard error = 0.135; P = .008), attitude towards seizures (B = -0.153; standard error = 1.192; P = .004) and medical expenses payment (B = -0.169; standard error = 1.703; P = .002).Symptoms of anxiety are common among caregivers of children with epilepsy in western China. Healthcare providers should pay more attention to caregivers with younger children, difficult financial situation, and greater fear of seizures. Exploring mental health interventions for caregivers is important.

The purpose of the study was to evaluate sleep quality in the parents of children with epilepsy (CWE) as well as their symptoms of anxiety and depression in Southern China. A structured questionnaire, comprised of The State–Trait Anxiety Inventory (STAI), Center for Epidemiologic Studies Depression Scale (CES-D), and the Pittsburgh Sleep Quality Index (PSQI), was administered to parents of CWE (n = 234) in Xiangya Hospital and parents of healthy children (n = 230) during 2019–2020. The scores (Mean ± SD) of State Anxiety Inventory (S-AI) and Trait Anxiety Inventory (T-AI) among parents of CWE were 51.850 ± 11.380 and 48.201 ± 9.526, respectively, which were significantly higher than those of control group (37.172 ± 8.047 and 37.478 ± 7.314, respectively) (p < 0.001). Compared with 10.84% in parents of healthy children, 23.51% of parents of CWE had symptoms of depression (p < 0.001). The mean score of total PSQI among parents of CWE (6.944 ± 3.814) was statistically higher than that of parents of healthy children (5.039 ± 3.390) (p < 0.001). Moreover, anxiety and depression subscores among parents of infants with epilepsy were significantly higher than in other groups. The T-AI and CES-D could explain 43.9% of the variance (R2 = 0.444, F = 92.215, p < 0.001) on the PSQI. Our study showed more severe symptoms of anxiety and depression as well as poorer sleep quality among parents of CWE, especially in the infants group. In light of this information, more attention should be paid to early identification and intervention of symptoms of anxiety and depression in susceptible parents who are the main caregivers of their CWE.

• Anxiety, depression and poor sleep quality were found in parents of children with epilepsy, especially in the infant group.

• Low sleep quality may precede mood disturbance or develop as a result of them.

• Greater attention should be paid to the main care taker of sick child with epilepsy. 

Purpose: The aim of this study was to investigate the relation between the physical problems of children with CP and caregiving burden and the emotional expression characteristics of caregivers.

Methods: The study included 144 caregivers of child with cerebral palsy and Zarit Burden Interview (ZBI) and Expressed Emotion Scale (EES) will be applied to the caregivers who will participate in the study. Disease severity of children with cerebral palsy will be evaluated by the Gross Motor Function Classification System (GMFCS) and Manual Ability Classification System (MACS) in children with cerebral palsy. Communication Function Classification System (CFCS) will be used to examine the communication of children with their families.;

Results: Accordingly, a positive, statistically significant, moderate correlation was found between the GMFCS, MACS, and CFCS scores and ZBI scores in patients with cerebral palsy (r ~ 0.50; p < 0.01). In this study, a positive, statistically significant but weak correlation was found between GMFCS, MACS, and CFCS scores and EES scores in patients with cerebral palsy (r ~ 0.30; p < 0.01). A statistically significant, moderate correlation was found between ZBI and EES (r ~ 0.50; p < 0.01).

Conclusion: According to the results of our study, as motor skills and communication skills decrease, especially the burden of caregivers increases and the family's emotional expression processes are related to these variables. We think that in the long-term follow-up of children with CP, it may be useful to provide appropriate psychiatric support by evaluating caregivers appropriately.

OBJECTIVE: To examine the association between care coordination experiences of family caregivers of children with medical complexity (CMC) and caregivers' health-related quality of life (HR-QOL).

METHODS: From July 2018 to July 2019, family caregivers of CMC completed an electronic survey (n = 136) at the time of initial contact with a regional complex care medical home. Information on caregiver HR-QOL and receipt of care coordination services were assessed using the Center for Disease Control's HR-QOL-14 measure and Family Experiences of Care Coordination questionnaire, respectively. Negative binomial regression, adjusted for caregiver and child characteristics, examined associations between caregiver HR-QOL and caregiver experiences of care coordination.

RESULTS: In the 30 days prior to initial contact, CMC caregivers reported a median of 3.5 mentally unhealthy days, 2 days felt depressed, 7 days felt anxious, and 16 days with insufficient sleep. Caregivers who had a knowledgeable, supportive care coordinator who advocates for their child reported significantly fewer days mentally unhealthy (incidence rate ratio [IRR], 0.46; 95% confidence interval [CI], 0.22-0.95), depressed (IRR, 0.44; 95% CI, 0.21-0.91), or anxious (IRR, 0.5; 95% CI, 0.29-0.85). Having a shared care plan was associated with significantly fewer days mentally unhealthy (IRR, 0.46; 95% CI, 0.23-0.93) or anxious (IRR, 0.53; 95% CI, 0.31-0.92). Having a written visit summary with appropriate content was associated with fewer days of insufficient sleep (IRR, 0.63; 95% CI, 0.43-0.93).

CONCLUSIONS: CMC family caregivers report experiencing mentally unhealthy days and negative mental symptom days. The experience of specific care coordination activities was associated with higher caregiver mental HR-QOL.

Objectives: Phenylketonuria (PKU) and mild hyperphenylalaninemia (HPA) are characterized by increased blood phenylalanine concentrations varying from mild to severe. Management of PKU was reported to be time consuming and burdensome for caregivers. This study intended to explore the experiences of families caring for a child with PKU/HPA in a country with a high PKU rate. The aim of this study was to compare parental well-being between parents of children with and without dietary restrictions and to explore the factors associated with parental psychological well-being.

Methods: Participants were interviewed about their experiences, concerns, and challenges related to the disease by using a semistructured questionnaire. After the interview, parents filled out the Beck Depression Inventory and State-Trait Anxiety Inventory-Trait.

Results: This study highlighted the adverse psychological, financial, and social effects of the diagnosis and management of the disease regarding the lives of the families of children with PKU/HPA. Although parental anxiety scores of children with and without dietary restrictions were similar, depressive symptom scores were higher in parents of children with dietary restrictions. However, in multiple regression analysis, lower household income and absence of perceived social support were found to be independent factors associated with higher depressive symptom scores. Having a daughter diagnosed with PKU/HPA and lower household income were found to be factors associated with higher anxiety scores.

Conclusion: This study revealed that income level, perceived social support, and gender of the child were factors associated with psychological well-being of parents caring for children with PKU/HPA. Health care professionals should identify the challenges faced by families and should be aware of risk factors associated with lower parental well-being to achieve better family adjustment and better health outcomes.

To incorporate the perspectives and experiences of family caregivers of children with obesity, the KidFit Health and Wellness Clinic, a paediatric weight management programme, embedded feedback opportunities into various stages of programme development. Caregivers were eligible to participate if their children had completed initial 4-week group-based pilot programming or were currently receiving treatment in 10 or 12 week group-based programming. Data were collected through feedback session discussions, audio-recorded, transcribed verbatim and analysed thematically. In total, 6 caregivers participated in the pilot group feedback session and 32 caregivers participated in the structured group feedback sessions. Caregivers reported that healthy lifestyle strategies first communicated by clinic staff to children during group sessions provided expert validation and reinforcement when discussing similar messages at home. Caregivers reported feeling isolated and blamed for causing their children's obesity and appreciated the supportive forum that group-based programming provided for sharing experiences. Since experiences of blame and isolation can burden caregivers of children with obesity, paediatric weight management programmes might consider including peer support opportunities and discussion forums for ongoing social support in addition to education about lifestyle change. 

Background and Objectives: During the coronavirus disease 2019 outbreak, the treatment of families with children on long-term KRT is challenging. This study was conducted to identify the current difficulties, worries regarding the next 2 months, and mental distress experienced by families with children on long-term KRT during the coronavirus disease 2019 outbreak and to deliver possible management approaches to ensure uninterrupted treatment for children on long-term KRT.

Design, Setting, Participants, & Measurements: A multicenter online survey was conducted between February 10 and 15, 2020, among the families with children on long-term KRT from five major pediatric dialysis centers in mainland China. The primary caregivers of children currently on long-term KRT were eligible and included. Demographic information, severe acute respiratory syndrome coronavirus 2 infection status, current difficulties, and worries regarding the next 2 months were surveyed using a self-developed questionnaire. The Patient Health Questionnaire-9 and the General Anxiety Disorder Scale-7 were used to screen for depressive symptoms and anxiety, respectively.

Results: Among the children in the 220 families included in data analysis, 113 (51%) children were on dialysis, and the other 107 (49%) had kidney transplants. No families reported confirmed or suspected cases of coronavirus disease 2019. Overall, 135 (61%) and 173 (79%) caregivers reported having difficulties now and having worries regarding the next 2 months, respectively. Dialysis supply shortage (dialysis group) and hard to have blood tests (kidney transplantation group) were most commonly reported. A total of 29 (13%) caregivers had depressive symptoms, and 24 (11%) had anxiety. After the survey, we offered online and offline interventions to address their problems. At the time of the submission of this paper, no treatment interruption had been reported.

Conclusions: The coronavirus disease 2019 outbreak has had physical, mental, logistical, and financial effects on families with children on long-term KRT. 

Aims: Parenting interventions in this review refer to supportive parenting training provided for parents or primary caregivers of children and adolescents with type 1 diabetes mellitus (T1DM). The review aimed to synthesize evidence about parenting interventions in parents or caregivers of children and adolescents with T1DM, and to evaluate the effect of interventions in reducing parents' or caregivers' psychological distress, helping them share diabetes management responsibility, seek social support, and improve their quality of life.

Methods: We searched PubMed, MEDLINE, EMBASE, CINAHL, Cochrane, and Web of Science from January 1978 to October 2018. Randomized controlled trials (RCTs) comparing an intervention group of parenting programs with a control group of usual care were included. The primary outcomes were stress, family responsibility and conflict, and social support. Secondary outcomes included other psychological index and quality of life. Pooled effect sizes of weighted mean difference (WMD) were calculated.

Results: A total of 17 RCTs with 962 participants met the inclusion criteria. Findings of the meta-analysis showed parenting interventions could significantly reduce parents' depression (WMD = -5.78, 95% CI: -6.23 to -5.33, I 2  = 0%) and distress (WMD = -5.28, 95% CI: -10.31 to -.25, I 2  = 0%), and help them ask for positive social support (WMD = .83, 95% CI: .03 to 1.64, I 2  = 0%). No beneficial changes of other outcomes were found.

Linking Evidence to Action: Parents of children and adolescents with T1DM need support from the multidisciplinary team in health care, especially in mental health, family management of childhood diabetes, and social support. Parenting interventions may help parents reduce psychological distress and depression and assist them to ask for social support. Future research should include well-designed RCTs with large samples, appropriate measures with clear definitions, objective assessment, and separation of effects on mothers and fathers.

Background: Family meetings facilitate the exploration of issues and goals of care however, there has been minimal research to determine the benefits and cost implications.; Aims: To determine: (1) if family caregivers of hospitalised patients referred to palliative care who receive a structured family meeting report lower psychological distress (primary outcome), fewer unmet needs, improved quality of life; feel more prepared for the caregiving role; and receive better quality of end-of-life care; (2) if outcomes vary dependant upon site of care and; (3) the cost-benefit of implementing meetings into routine practice.; Desi​gn: Pragmatic cluster randomised trial involving palliative care patients and their primary family caregivers at three Australian hospitals. Participants completed measures upon admission (Time 1); 10 days later (Time 2) and two months after the patient died (Time 3). Regression analyses, health utilisation and process evaluation were conducted.; Results: 297 dyads recruited; control ( n  = 153) and intervention ( n  = 144). The intervention group demonstrated significantly lower psychological distress (Diff: -1.68, p  < 0.01) and higher preparedness (Diff: 3.48, p  = 0.001) at Time 2. No differences were identified based on quality of end of life care or health utilisation measures.; Conclusions: Family meetings may be helpful in reducing family caregiver distress and enhancing their preparedness for the caregiving role and it appears they may be conducted without increased hospital health utilisation impacts; although opportunity costs need to be considered in order to routinely offer these as a standardised intervention. Additional health economic examination is also advocated to comprehensively understand the cost-benefit implications.; Trial Registration: Australian and New Zealand Clinical Trials Registry ACTRN12615000200583.

Background: Informal caregivers of critically ill patients in intensive care unit (ICUs) experience negative psychological sequelae that worsen after death. We synthesized outcomes reported from ICU bereavement interventions intended to improve informal caregivers’ ability to cope with grief.

Data sources: MEDLINE, EMBASE, CINAHL and PsycINFO from inception to October 2020.

Study selection: Randomized controlled trials (RCTs) of bereavement interventions to support informal caregivers of adult patients who died in ICU.

Data extraction: Two reviewers independently extracted data in duplicate. Narrative synthesis was conducted.

Data synthesis: Bereavement interventions were categorized according to the UK National Institute for Health and Clinical Excellence three-tiered model of bereavement support according to the level of need: (1) Universal information provided to all those bereaved; (2) Selected or targeted non-specialist support provided to those who are at-risk of developing complex needs; and/or (3) Professional specialist interventions provided to those with a high level of complex needs. Outcome measures were synthesized according to core outcomes established for evaluating bereavement support for adults who have lost other adults to illness.

Results: Three studies of ICU bereavement interventions from 31 ICUs across 26 hospitals were included. One trial examining the effect of family presence at brain death assessment integrated all three categories of support but did not report significant improvement in emotional or psychological distress. Two other trials assessed a condolence letter intervention, which did not decrease grief symptoms and may have increased symptoms of depression and post-traumatic stress disorder, and a storytelling intervention that found no significant improvements in anxiety, depression, post-traumatic stress, or complicated grief. Four of nine core bereavement outcomes were not assessed anytime in follow-up.

Conclusions: Currently available trial evidence is sparse and does not support the use of bereavement interventions for informal caregivers of critically ill patients who die in the ICU.

Stress associated with caring for a mentally ill spouse can adversely affect the health status of caregivers and their children. Adding to the stress of caregiving is the stigma often placed against spouses and children of people with mental illness. Contrary to mental illness, many physical disorders such as cancer may be less stigmatized (expect pulmonary cancer). In this study, we measured externalized and internalized stigma, as well as psychological (depressive symptoms and stressful life events) and physiological (basal salivary cortisol levels) markers of stress in 115 spouses and 154 children of parents suffering from major depressive disorder, cancer, or no illness (control group). The results show that spouses and children from families with parental depression present significantly more externalized stigma than spouses and children from families with parental cancer or no illness, although we find no group differences on internalized stigma. The analysis did not show a significant group difference either for spouses or their children on depressive symptomatology, although spouses from the parental depression group reported greater work/family stress. Finally, we found that although for both spouses children the awakening cortisol response was greater on weekdays than on weekend days, salivary cortisol levels did not differ between groups. Bayes factor calculated on the null result for cortisol levels was greater than 100, providing strong evidence for the null hypothesis H0. Altogether, these results suggest an impact of stigma toward mental health disorder on psychological markers of stress but no impact of stigma on physiological markers of stress. We suggest that these results may be due to the characteristics of the families who participated in the present study.

Background and objectives Family caregivers play a curial role in supporting and caring for their mentally ill relatives. Their struggle for facing stigma and shouldering caregiving burden is marginalized, undervalued, and invisible to medical services. This study assessed the stigma and burden of mental illnesses, and their correlates among family caregivers of mentally ill patients. Methods A cross-sectional study design was used to collect data from 425 main family caregivers of mentally ill patients at Assiut University Hospital. A structured interview questionnaire was designed to collect socio-demographic data of both patients and their caregivers. Stigma scale for caregivers of people with mental illness (CPMI) was used to assess the affiliate stigma, while the associative stigma was assessed by the explanatory model interview catalogue stigma scale (EMIC-Stigma scale). The caregivers' burden was assessed using Zarit burden Interview, and Modified Attitude toward Mental Illness Questionnaire was used to assess caregivers' knowledge and attitude towards mental illness. Results Bipolar disorder (48%) and schizophrenia/other related psychotic disorders (42.8%) were the most common mental illnesses among the study patients. The mean scores of CPMI total scale, EMIC-Stigma scale, and Zarit Burden scale were 56.80 +/- 7.99, 13.81 +/- 5.42, and 55.20 +/- 9.82, respectively. The significant correlates for affiliate stigma were being parents of patients (ss = 4.529, p < 0.001), having higher associate stigma (ss = 0.793, p < 0.001), and aggressive behavior of mentally ill patients (ss = 1.343, p = 0.038). The significant correlates for associate stigma of the study caregivers were being caregivers' relatives other than parents (ss = 1.815, p = 0.006), having high affiliate stigma (ss = 0.431, p < 0.001), having poor knowledge and negative attitude towards mental illness (ss = - 0.158, p = 0.002), and aggressive behavior of mentally ill relatives (ss = 1.332, p = 0.005). The correlates for the high burden were being male (ss = 3.638, p = 0.006), non-educated caregiver (ss = 1.864, p = 0.045), having high affiliate stigma (ss = 0.467, p < 0.001), having high associative stigma (ss = 0.409, p < 0.001), having poor knowledge and negative attitude toward mental illness (ss = - 0.221, p = 0.021), seeking traditional healers and non-psychiatrist's care from the start (ss = 2.378, p = 0.018), and caring after young mentally ill relatives (ss = - 0.136, p = 0.003). Conclusion The studied caregivers suffered from stigma and a high level of burden. Psycho-educational programs directed toward family caregivers are highly recommended.

Aims To test a multiple mediation model of internalized stigma and caregiving burden in the relationship between severity of illness and distress among family caregivers of persons living with schizophrenia. Design This is a cross-sectional study. Methods Data were collected from a consecutive sample of 344 Chinese family caregivers of persons living with schizophrenia between April-August 2018. Instruments used in this research included the Clinical Global Impression-Severity of Illness, the Internalized Stigma of Mental Illness Scale, the Caregiver Burden Inventory, and the Distress Thermometer. Data analysis was conducted using descriptive statistics, the Spearman correlation, and regression analysis to estimate direct and indirect effects using bootstrap analysis. Results This research found that internalized stigma and caregiving burden can separately and sequentially mediate the relationship between severity of illness and distress. Moreover the mediation of internalized stigma plays the largest role among the multiple mediations. Conclusion The severity of illness, internalized stigma, and caregiving burden are significant factors of distress among family caregivers of persons living with schizophrenia. The future intervention studies which be designed aiming at the three factors may be beneficial for family caregivers of persons living with schizophrenia. Impact This research examined the psychosocial development of distress and indicated that interventions improving patients' symptoms and decreasing internalized stigma and caregiving burden can help to prevent or reduce distress among family caregivers.

OBJECTIVES: To examine relationships in mindfulness and illness acceptance and psychosocial functioning in patients with metastatic breast cancer and their family caregivers. SAMPLE & SETTING: 33 dyads from an academic cancer center in the United States. METHODS & VARIABLES: Participants completed questionnaires on mindfulness, illness acceptance, relationship quality, anxiety, and depressive symptoms. Dyadic, cross-sectional data were analyzed using actor-partner interdependence models. RESULTS: Greater nonjudging, acting with awareness, and illness acceptance among caregivers were associated with patients' and caregivers' perceptions of better relationship quality. Higher levels of these processes were associated with reduced anxiety and depressive symptoms in patients and caregivers. IMPLICATIONS FOR NURSING: Aspects of mindfulness and illness acceptance in dyads confer benefits that are primarily intrapersonal in nature. Nurses may consider introducing mindfulness and acceptance-based interventions to patients and caregivers with adjustment difficulties.

The purpose of this paper was to investigate the psychosocial consequences of transitioning into informal caregiving, and to investigate this association in male and female caregivers with a longitudinal design. Longitudinal panel data from the population-based German Ageing Survey (wave 2014, 2017) were used. The complete sample included up to 13,333 observations (N = 8658) pooled over waves 2014 and 2017. In total, 2.56% of the complete sample transitioned into informal caregiving (N = 547). Individuals who transitioned into informal caregiving, were on average aged 66 years and 54.48% of these participants were female. Wellestablished scales were used to assess the psychosocial outcomes of network size, loneliness and social isolation, depressive symptoms, as well as positive and negative affect. Transitioning into informal caregiving was used as the main predictor. Sociodemographic characteristics and physical health were controlled for. Results of fixed effects regression analyses showed that transitioning into informal caregiving was significantly associated with increased network size (b = 0.35, p < 0.05), increased depressive symptoms (b = 0.63, p < 0.05) and increased negative affect (b = 0.08, p < 0.001). When stratifying the sample by gender, the results showed increased network size (b = 0.43, p < 0.05), depressive symptoms (b = 0.93, p < 0.01), and loneliness (b = 0.06, p < 0.05) among male caregivers, while female caregivers reported increased negative affect (b = 0.10, p < 0.001). The study's results extend previous research by showing that transitioning into informal caregiving is mainly associated with negative psychological outcomes. Additional analyses suggest that female and male caregivers experience different psychosocial consequences. Thus, gender should be taken into consideration when investigating informal care and its outcomes, and support should be tailored specifically to the needs of female and male caregivers.

Purpose: Patients with cancer often experience a reduced ability to eat. This can have psychosocial consequences for both patients and informal caregivers. Current literature is mainly focused on patients with end stage advanced disease and cancer cachexia. This qualitative study provides new insights in the field of Psycho Oncology by exploring psychosocial consequences of a reduced ability to eat in patients in different stages of the disease and in recovery and remission. Method: Semi-structured interviews (n = 26) were conducted in patients with head and neck, lung cancer or lymphoma. Patients' informal caregivers participated in 12 interviews. All interviews were recorded, transcribed and thematically analysed using Atlas.ti. Results: Four themes emerged related to psychosocial consequences of a reduced ability to eat: struggle with eating, high sense of responsibility, misunderstanding by social environment and social consequences. Emotions mentioned by patients and informal caregivers were: anger, anxiety, disappointment, grief and sadness, guilt, powerlessness and shame. The theme social consequences was related to: less pleasure experienced and the social strategies: adjust, search for alternatives and avoid. Conclusion: Patients with cancer and their informal caregivers experience a wide range of psychosocial consequences of reduced ability to eat during all phases of the disease trajectory and in recovery and remission. It is important to recognise and acknowledge this struggle to optimise future care.

To investigate the relationships between (a) the psychological status of the caregiver, (b) the specific features of caregiving as perceived by the cognitive therapist in neuro-rehabilitation, (c) the caregivers' subjective approach to neuro-rehabilitation, and (d) the functional outcome of the patient. Twenty-four patients with severe acquired brain injury and their 24 caregivers participated in this observational study. Caregivers underwent a psychological assessment examining emotional distress, burden and family strain; their subjective approach to neuro-rehabilitation has been evaluated by two specific answers. The patients' cognitive therapists responded to an ad-hoc questionnaire, namely the "Caregiving Impact on Neuro-Rehabilitation Scale" (CINRS), evaluating the features (i.e., amount and quality) of caregiving. Finally, the functional outcome of the patient was assessed through standardized scales of disability and cognitive functioning. The caregivers' psychological well-being was associated to the features of caregiving, to the subjective approach to neuro-rehabilitation, and to the functional recovery of their loved ones. A better caregivers' approach to neuro-rehabilitation was also associated to an overall positive impact of caregiving in neuro-rehabilitation and to a better functional outcome of the patients. We posited a virtuous circle involving caregivers within the neuro-rehabilitation process, according to which the caregivers' psychological well-being could be strictly associated to a better level of caregiving and to a better functional outcome of the patients that, in turn, could positively influence the caregivers' psychological well-being. Although preliminary, these results suggest a specific psycho-educational intervention, aimed at improving the caregivers' psychological well-being and at facilitating their caring of the loved one. 

Objectives: To examine perceived stigma and its correlates in remitted patients with mental illnesses and their caregivers.; Methods: In patients with mental illnesses, their perceived stigma (Perceived Devaluation Discrimination Scale), endorsed secrecy (Secrecy scale), self-esteem (Rosenberg Self-Esteem Scale), functioning (Work Social Adjustment Scale), and emotional wellbeing (Well Being Index) were assessed. In caregivers, their perceived stigma towards patients (Devaluation of Consumer Scale) and families (Devaluation of Consumer Families Scale), emotional wellbeing (Well Being Index), and depressive symptoms (Centre for Epidemiological Studies-Depression scale) were assessed. Differences between diagnoses were examined using ANOVA. Correlation between perceived stigma among patients and caregivers was studied.; Results: Of 152 patients with mental illnesses, 76.3% and 85.53 % reported moderate-to-high levels of perceived stigma and endorsed secrecy, respectively. Of 152 caregivers, 40.13% and 25.65% reported moderate-to-high levels of perceived stigma towards patients and families, respectively. Overall, patients had high levels of perceived stigma and endorsed secrecy, low self-esteem, moderate functional impairment, and extremely poor emotional wellbeing. There were significant differences across different diagnostic categories with respect to self-esteem, functioning, perceived stigma, secrecy, and emotional wellbeing. Patients with substance use disorders reported highest perceived stigma, lowest self-esteem, and most severe functional impairment, and their caregivers reported highest perceived stigma towards patients and families, most-reduced emotional wellbeing, and highest rates of depressive symptoms. Patients' perceived stigma was not associated with caregivers' perceived stigma.; Conclusion: Perceived stigma is prevalent among patients and caregivers and affects their quality of life. The stigma associated with substance use disorder merits special attention.

Purpose: There have been little researches examining the role of family functioning on psychological outcomes in the field of adult epilepsy. We determined whether family functioning is correlated with felt stigma in adults with epilepsy. Methods: In this cross-sectional study, adults with epilepsy and their caregivers were recruited. Data were collected using the Family Adaptability and Cohesion Evaluation Scale (FACES) Ill, the Family adaptation, partnership, growth, affection, and resolve (APGAR) questionnaire, the Stigma Scale for Epilepsy (SS-E), the modified questionnaire for episodes of discrimination, and the Beck Depression Inventory. Family functioning was measured by the caregivers. Results: A total of 273 adult patients and their primary caregivers were included. Multivariate logistic analyses showed that family cohesion and excellent family functioning were negatively correlated with felt stigma after controlling for confounding variables. Enacted stigma, depressive symptoms, and university education were also significant. Interaction between enacted stigma and family cohesion on felt stigma was significant (p = 0.049). Family cohesion was negatively correlated with felt stigma only in the patients with enacted stigma (p = 0.011). Conclusions: Family functioning especially family cohesion may have protective effects against development of felt stigma in adults with epilepsy. Such protecting effects against felt stigma may be different according to enacted stigma. This understanding is helpful for developing effective psychosocial interventions to reduce felt stigma in patients with epilepsy. 

Background Family caregivers of patients with advanced cancer have been reported to provide long hours of care and be at risk for poor psychological outcomes. Although research has focused on the nature of caregiving burden, little attention has been paid to identifying protective factors that improve caregiver psychological outcomes. Aim We examined the relationship between caregivers' time spent caregiving and the following psychological outcomes: anxiety, depression and caregiving esteem. Subsequently, we explored the main and moderating effects of caregiver-perceived self-competency and sense of meaning on caregiver psychological outcomes. Design/participants Cross-sectional analysis was conducted using the baseline data from an ongoing cohort study. Family caregivers of advanced cancer patients (n=287) were recruited from two tertiary hospitals in Singapore. Results Time spent caregiving was not significantly associated with caregiver anxiety, depression or caregiving esteem. However, significant main effects of self-competency on anxiety and caregiving esteem; and sense of meaning on anxiety, depression and caregiving esteem were observed. Moderator analyses further indicated that self-competency attenuated the positive relationship between time spent caregiving and anxiety, while sense of meaning attenuated the negative relationship between time spent caregiving and caregiving esteem. Conclusion Greater perceived self-competency and sense of meaning are related to better caregiver psychological outcomes, and protect caregivers from worsening outcomes as caregiving hours increase. Our findings suggest that screening caregivers for distress is an important part of care, and that supportive interventions for caregivers should aim to enhance their perceived caregiving competencies and the ability to make meaning of their caregiving role.

Background: Informal caregivers often serve as decision makers for dependent or vulnerable individuals facing health care decisions. Decision regret is one of the most prevalent outcomes reported by informal caregivers who have made such decisions. Objective: To examine levels of decision regret and its predictors among informal caregivers who have made health-related decisions for a loved one. Data sources: We performed a systematic search of Embase, MEDLINE, Web of Science, and Google Scholar up to November 2018. Participants were informal caregivers, and the outcome was decision regret as measured using the Decision Regret Scale (DRS). Review methods: Two reviewers independently selected eligible studies, extracted data, and assessed the methodological quality of studies using the Mixed Methods Appraisal Tool. We performed a narrative synthesis and presented predictors of decision regret using a conceptual framework, dividing the predictors into decision antecedents, decision-making process, and decision outcomes. Results: We included 16 of 3003 studies identified. Most studies (n = 13) reported a mean DRS score ranging from 7.0 to 32.3 out of 100 (median = 14.3). The methodological quality of studies was acceptable. We organized predictors and their estimated effects (β) or odds ratio (OR) with 95% confidence interval (CI) as follows: decision antecedents (e.g., caregivers' desire to avoid the decision, OR 2.07, 95% CI [1.04–4.12], P = 0.04), decision-making process (e.g., caregivers' perception of effective decision making, β = 0.49 [0.05, 0.93], P < 0.01), and decision outcomes (e.g., incontinence, OR = 4.4 [1.1, 18.1], P < 0.001). Conclusions: This review shows that informal caregivers' level of decision regret is generally low but is high for some decisions. We also identified predictors of regret during different stages of the decision-making process. These findings may guide future research on improving caregivers' experiences.

BACKGROUND/OBJECTIVES: Few studies have rigorously examined the magnitude of changes in well‐being after a transition into sustained and substantial caregiving, especially in population‐based studies, compared with matched noncaregiving controls. DESIGN: We identified individuals from a national epidemiological investigation who transitioned into caregiving over a 10‐ to 13‐year follow‐up and provided continuous in‐home care for at least 18 months and at least 5 hours per week. Individuals who did not become caregivers were individually matched with caregivers on age, sex, race, education, marital status, self‐rated health, and history of cardiovascular disease at baseline. Both groups were assessed at baseline and follow‐up. SETTING: REasons for Geographic And Racial Differences in Stroke study. PARTICIPANTS: A total of 251 incident caregivers and 251 matched controls. MEASUREMENTS: Perceived Stress Scale (PSS), 10‐Item Center for Epidemiological Studies‐Depression (CES‐D), and 12‐item Short‐Form Health Survey quality‐of‐life mental (MCS) and physical (PCS) component scores. RESULTS: Caregivers showed significantly greater worsening in PSS, CES‐D, and MCS, with standardized effect sizes ranging from 0.676 to 0.796 compared with changes in noncaregivers. A significant but smaller effect size was found for worsening PCS in caregivers (0.242). Taking on sustained caregiving was associated with almost a tripling of increased risk of transitioning to clinically significant depressive symptoms at follow‐up. Effects were not moderated by race, sex, or relationship to care recipient, but younger caregivers showed greater increases in CES‐D than older caregivers. CONCLUSION: Persons who began substantial, sustained family caregiving had marked worsening of psychological well‐being, and relatively smaller worsening of self‐reported physical health, compared with carefully matched noncaregivers. Previous estimates of effect sizes on caregiver well‐being have had serious limitations due to use of convenience sampling and cross‐sectional comparisons. Researchers, public policy makers, and clinicians should note these strong effects, and caregiver assessment and service provision for psychological well‐being deserve increased priority. 

Acceptance and commitment therapy (ACT) is an emerging evidenced-based practice based on a psychological flexibility model encompassing six processes, including acceptance, cognitive defusion, self-as-context, being present, values, and committed action. ACT aims to improve overall psychological flexibility and the six processes. This systematic review and meta-analysis examined the effects of ACT on measures of purported processes among family caregivers. Four electronic databases were searched from the date of inception of each database to March 30, 2020. A total of 18 studies met the eligibility criteria, including 8 randomized controlled trials (RCTs), 1 nonrandomized control group pretest-posttest design study, and 9 one group pretest-posttest design studies. A meta-analysis of 8 RCTs found a moderate effect of ACT on psychological flexibility among family caregivers at the immediate posttest and follow-up. A meta-analysis of 9 one group pretest-posttest design studies showed a large effect of ACT on psychological flexibility at the immediate posttest and follow-up. No significant effect was found in measures of cognitive fusion, valued living, and mindfulness except for a meta-analysis of 2 RCTs showing a small effect of ACT on cognitive fusion at follow-up. This review discusses synthesized findings, a gap in the literature, and suggestions for future studies.

Background: According to the literature reviewed, although families living with a mentally ill relative often face violence, this issue has been little studied in nursing. Methods: We conducted a qualitative research study to explore the experience of families dealing with this complex reality. We adopted Jacques Donzelot's theory of the government of family as our theoretical framework and used grounded theory as our research methodology. In total, 14 participants who had been victims of violence perpetrated by relatives with severe mental illness were interviewed. Findings: Qualitative analysis led to the identification of five themes: (a) medico-legal apparatus; (b) experience of violence; (c) the family's responsibility toward the violent relative; (d) exclusion and stigmatisation; and (e) suffering and resilience. The present paper focuses on the study's central theme: the family's responsibility toward the violent relative.

The psychological well-being of family caregivers is influenced by their relations with care receivers, and whether they have choice in becoming a caregiver. Limited study has explored the interaction effect of caregiver-receiver relations and caregiving choice on caregivers' psychological well-being. This study examines whether the caregiver's perceived choice moderates the association between caregiver-receiver relation and psychological well-being. Using population-based data from the 2012 Canada General Social Survey - Caregiving and Care Receiving (n = 5,285), this study applies regression and ANCOVA analyses. Results show family caregivers for spouses and children report significantly worse psychological well-being, whereas having choice to become a caregiver is associated with better psychological well-being. There was a significant moderation effect of caregiving choice on the association between caregiver-receiver relation and psychological well-being. Findings suggest that more services should be targeted for family caregivers without choice for caregiving as well as those who provide care for their children.

Background: Informal caregivers (IC) are often overshadowed by the attention required by the terminally ill. This study aims to reveal the estimated proportion of caregiver burden, psychological manifestations and factors associated with caregiver burden among IC in the largest specialized Palliative Care Unit (PCU) in Malaysia. Methods: This was a cross-sectional study involving IC attending a PCU. Caregiver burden and psychological manifestations were measured using previously translated and validated Zarit Burden Interview and DASS-21 questionnaires respectively. Two hundred forty-nine samples were selected for analysis. Result: The mean ZBI score was 23.33 ± 13.7. About half of the population 118(47.4%) was found to experienced caregiver burden whereby majority have mild to moderate burden 90(36.1%). The most common psychological manifestation among IC is anxiety 74(29.7%) followed by depression 51(20.4%) and stress 46(18.5%). Multiple logistic regression demonstrated that women who are IC to patients with non-malignancy were less likely to experience caregiver burden. IC who were highly educated and spent more than 14 h per day caregiving were at least twice likely to experience caregiver burden. Finally, those with symptoms of depression and anxiety were three times more likely to suffer from caregiver burden. Conclusion: Caregiver burden among IC to palliative patients is prevalent in this population. IC who are men, educated, caregiving for patients with malignancy, long hours of caregiving and have symptoms of depression and anxiety are at risk of developing caregiver burden. Targeted screening should be implemented and IC well-being should be given more emphasis in local policies.

The Health Insurance Portability and Accountability Act of 1996 (HIPAA) requires that healthcare providers allow patients to engage in their healthcare by allowing access to their health records. Often patients need informal caregivers including family members or others to help them with their care. This paper explores whether trust is a key factor for informal caregivers' decision to use health information technologies (HIT) including electronic health records (EHR), patient portals, mobile apps, or other devices to care for their patient. Six reviewers conducted a comprehensive search of four literature databases using terms that pertained to a caregiver and trust to investigate the role trust plays when caregivers use HIT. While trust is a key factor for the use of HIT, it the researchers only identified ten articles that met the research question thresholds. Four main topics of trust surfaced including perceived confidentiality, perceived security, technological malfunction, and trustworthiness of the information. Trust is a critical factor for informal caregivers when using HIT to assist in the care of their patient (child, loved one, parent, or acquaintance). Based on the findings, it is clear that more research on the use of HIT by caregivers is needed.

Objectives Describe the psychosocial impact of being a cancer survivor caring for a spouse with an advanced cancer diagnosis. Compare the psychosocial outcomes of those experiencing dual roles of cancer survivor and cancer family caregiver. Importance. As early detection and treatment improves, more people become cancer survivors, making it increasingly common that survivors eventually care for a spouse also diagnosed with cancer. Understanding these relationships is crucial to understanding patient-caregiver dynamics. Objective(s). Describe the impact of advanced cancer caregivers' personal history of cancer on their own and the patients' psychosocial outcomes using quantitative and qualitative methods. Method(s). Eighty-eight advanced cancer patients and their spouse caregivers completed questionnaires. Caregivers also completed a brief qualitative interview about coping strategies. Data from dyads including caregivers with and without a personal history of cancer were compared. Results. Eleven caregivers were cancer survivors. These caregivers were mostly white (n¼10), 64 years old on average, and married for 30 years (SD¼9.32). There were no significant differences in demographics, anxiety, or depression between survivors and non-survivors. Survivors reported higher preparedness for caregiving than non-survivors (t¼2.479, p¼.01). Patients whose caregivers were survivors reported higher depression symptoms than patients whose caregivers were not survivors (B¼2.371, SE¼1.009, t¼2.349, p¼.021). During interviews, only 3 survivor caregivers referenced their own cancer. Survivor caregivers did, however, report drawing upon shared cancer experiences from other family members and support groups as a coping strategy. Conclusion(s). Caregivers' personal cancer history may give them tools to prepare for caring for a spouse with cancer. However, they may prefer to focus on the patient rather than their own past experiences. Patients with a survivor caregiver may report higher levels of depression because of their own prior experience with cancer as a caregiver. Caregivers also reported not speaking with the patient about their own cancer experience, suggesting avoidance and/or a desire to avoid upsetting the patient by bringing up their own concerns. Impact. Cancer survivorship may impact caregiving for others with a cancer diagnosis. More research is needed to understand this relationship.

Objective: This study aims to translate the Caregiver Self-Assessment Questionnaire (CSAQ) into Turkish language and to test its reliability and validity in Turkish informal family caregivers. Materials and methods: This is a cross-sectional and methodological study. Eighty family caregivers (54.53 ± 12.07 years; range 25 to 77 years; 65 females, 15 males) were included in the study. Demographic properties of the participants (age, sex, education, occupation, marital status), relationship with care recipient, caregiving time, main diseases of the patients were recorded. After that CSAQ, Caregiver Well-Being Scale (CWBS) and Hospital Anxiety Depression Scale (HADS) were used for data collection. A test-retest interval of seven-days was used to assess the reliability. Internal consistency between the items was assessed by Cronbach's alpha coefficient. For reliability; test-retest reliability, intraclass correlation coefficient, and paired sample t tests were used. Intercorrelation of variables was performed with Spearman's rho tests. A ROC curve and sensitivity and specificity analysis were performed to determine the ability of the CSAQ to predict depression or anxiety. Results: Totally 80 participants completed test/retest procedures. Content Validity Index values of the Items were sufficient and all items were included in the questionnaire. During exploratory factor analysis, 1 factor with eigenvalues greater than 1 were extracted, explaining 62.36% of the total variance. The corrected item total correlation coefficients for Item 2 and Item 5 were found to be <0.3. Therefore, these two items were omitted. Cronbach's α value was found as 0.90 (excellent level). Test-retest reliability (Intraclass correlation coefficient values range: 0.93-0.97) of the CSAQ was found to be excellent. Statistically negative moderate correlations were detected between CSAQ total score and CWBA basic needs and activities of living sub scores (rho = −0.605, rho = −0.523, p < 0.001), while positive strong correlations were detected between HADS depression and anxiety scores (rho = 0.610, rho = 0.651, p < 0.001). CSAQ score of 9 or greater resulted in a sensitivity of 0.56 and a specificity of 0.87 for depression and sensitivity of 0.84 and a specificity of 0.83 for anxiety. According to the scoring instructions of CSAQ with the positivity of any one of four criteria, we found sensitivity of 0.87 for depression and 0.96 for anxiety. Conclusion: The Turkish version of the CSAQ is a valid and reliable questionnaire for evaluating stress-levels of informal family caregivers. Measures of caregivers' psychological status are of clinical value. The Caregiver Self-Assessment Questionnaire functions as a screening measure for symptoms of depression and anxiety. The Turkish version of the Caregiver Self-Assessment Questionnaire is a valid and reliable questionnaire for evaluating stress-levels of informal family caregivers. 

Objective: To know the development of the scientific evidence on the uncertainty towards the disease of family caregivers of patients in palliative care. Materials and methods: A descriptive scoping review. A search was conducted in the Embase, ScienceDirect, Medline, Academic Search Complete, Scopus databases, during the 2000-2019 period. The following MeSH terms were used: uncertainty, palliative care, end of life, nursing and caregiver. Fifty articles were selected after the criticism process. Results: Five thematic nuclei emerged: characterization of uncertainty in the caregiver, factors influencing uncertainty, resources to manage uncertainty, uncertainty assessment, and therapies and interventions to approach uncertainty. The higher scale of evidence is found in the characterization of uncertainty in the caregiver, and the voids direct the development of Nursing interventions on the uncertainty of the caregivers of individuals in palliative care. Conclusions: Although the factors influencing uncertainty towards the disease of the caregiver are widely explored, the evidence on the interventions that may help to reduce uncertainty towards the disease is still limited. 

Background informal carers of people with dementia are at greater risk of anxiety and depressive disorders if they find caregiving to be a burden. The aim of this study was to use a network analysis of cross-sectional data to investigate the relationships between anxiety and depressive symptoms in family carers of older people with dementia who experience burden. Methods sixty family carers exhibiting high levels of burden using the Zarit Burden Interview were included in the study. Participants completed the Hospital Anxiety and Depression Scale. The network analysis identified the depression and anxiety symptom network using features including a topological graph, network centrality metrics and community analysis. The network was estimated through the graphical LASSO technique in combination with a walktrap algorithm to obtain the clusters within the network and the connections between the nodes (symptoms). A directed acyclic graph was generated to model symptom interactions. Results the resulting network architecture shows important bridges between depression and anxiety symptoms. Lack of pleasure and loss of enjoyment were identified as potential gateway symptoms to other anxiety and depression symptoms and represent possible therapeutic targets for psychosocial interventions. Fear and loss of optimism were highly central symptoms, indicating their importance as warning signs of more generalised anxiety and depression. Conclusions this network analysis of depressive and anxiety symptoms in overburdened family carers provides important insights as to what symptoms may be the most important targets for behavioural interventions. 

This study assessed the subjective well‐being and perceived stress of unpaid carers of disability benefit claimants. A total of 129 carers from the UK were surveyed between July and September 2017, using a cross‐sectional design. Carers, who provided unpaid support to sick or disabled friends, family or neighbours in a non‐professional capacity, reported here as unpaid carers, were asked to complete a web‐based questionnaire comprising of the Perceived Stress–10‐item Scale (PSS‐10), the Personal Wellbeing Index–Adult (PWI‐A), sociodemographic characteristics, the time they spent caring per day and the number of Personal Independence Payment and Work Capability Assessment interviews prepared for and attended by the person they cared for. Hierarchical regression analyses were performed to assess the effects of the number of benefit assessments on stress and well‐being scores, controlling for carers' sociodemographic characteristics and the time they spent caring. Analyses revealed that the number of times that claimants were exposed to benefit assessments significantly and negatively predicted unpaid carers' well‐being and was positively related to their stress levels. After controlling for sociodemographic characteristics and hours supporting per day, benefit assessments predicted 8.1% of perceived stress and 4.3% of well‐being variance. Being a female unpaid carer of a disability benefit claimant negatively predicted 7.5% of well‐being variance. The results offered unique evidence of the negative psychological effects of disability benefit assessments upon unpaid carers, while adding to the evidence of female carers facing increased risks of psychological distress.

Objective: There is scarce literature on stigma in families living with psychogenic nonepileptic seizures (PNES). Using a cohort of patients with epileptic seizures (ES) and their caregivers as controls, we aimed to quantify the level of patient and caregiver stigma in PNES and identify associations of patient and caregiver characteristics with it. Methods: Patients with PNES and ES and their caregivers completed surveys about demographic, clinical, and psychosocial characteristics. Multivariate regression analysis was used to identify correlates of patient and caregiver stigma. Results: Forty-three patients with PNES and 165 patients with ES were recruited. Compared with patients with ES, patients with PNES had shorter disease duration, higher seizure frequency, normal diagnostic data, poorer psychosocial health, and fewer antiseizure medications (ASMs). A total of 76.5% of patients with PNES and 59.5% of patients with ES felt stigmatized. Patient stigma level was higher in patients with PNES compared with those with ES, and it was negatively associated with patient quality of life (QOL). Additionally, 28 caregivers of patients with PNES and 99 caregivers of patients with ES were recruited. There were no significant demographic, caregiving, or psychosocial differences between the two caregiver cohorts. Seventy-two percent of caregivers of patients with PNES and 47% of caregivers of patients with ES felt stigmatized. Caregiver stigma level was also higher in caregivers of patients with PNES compared with caregivers of patients with ES, and it was negatively associated with patient QOL and positively associated with patient and caregiver anxiety. Conclusion: Compared with those with ES, patients and caregivers living with PNES experience stigma more frequently and to a higher extent. Patient QOL emerges as a consistent correlate of that stigma. 

Introduction: We aimed to evaluate the emotional state and quality of life of family caregivers of stroke patients and to investigate the relationship between patient factors and these characteristics of caregivers. Materials and Method: Ninety-seven patients with hemiplegia after a cerebrovascular event and their caregivers were included in this cross-sectional study. The emotional state of the caregivers was evaluated with the Hospital Anxiety and Depression Scale (HADS). Their quality of life was evaluated with Short Form- 36. Functional Independence Measurement (FIM) and modified-Rankin Score (MRS) were used for functional status of the patients, HADS was used for their emotional state and Stroke-Specific Quality of Life Scale (SS-QOL) was used for their quality of life. Results: Mean HADS-Anxiety score was 9.0 ± 3.7 and mean HADS-Depression score was 8.3 ± 3.7 in caregivers. Mean HADS-Anxiety score was 10.1 ± 3.4 and mean HADS-D score was 8.7 ± 3.6 in patients. The rates of anxiety disorder and depression in caregivers were 39.2% and 55.7%, respectively. The rates of anxiety disorder and depression in stroke patients were 40.2% and 50.5%, respectively. A positive correlation was found between HADS scores of caregivers and patients (p < 0.05). There was a significant negative correlation between the HADS scores of caregivers and SS-QOL scores of patients (p < 0.05). There was a statistically significant relationship between the quality of life of caregivers and the MRS, motor FIM and FIM-total scores of patients (p < 0.05). Conclusion: As a result, mood disorders were common in stroke patients and their caregivers. Quality of life of caregivers was decreased. There was a relationship between the emotional state of patients and caregivers.

Purpose of Review: Informal caregivers of individuals affected by cancer undertake a range of activities and responsibilities throughout the course of the cancer care trajectory. This role is often undertaken alongside employment and other caring roles and can contribute to caregiver burden, which may be ameliorated through psychosocial intervention.; Recent Findings: Fifteen new studies investigating the potential of psychosocial interventions for reducing caregiver burden were identified from the period January 2019 to February 2020. Studies were mostly quasi-experimental or randomised controlled trials (RCTs). Psychoeducation was the main intervention identified, though content varied, psychoeducation was associated with improvements in burden, quality of life (QoL) domains and psychological symptoms for caregivers. A small number of counselling/therapeutic interventions suggest that caregivers supporting patients with advanced cancer or cancers with high symptom burden may experience reduced psychological symptoms and QoL benefits. There was a paucity of evidence for other psychosocial interventions (e.g. mindfulness, acceptance and commitment therapy) and methodological quality was variable across all intervention types.; Summary: Psychosocial interventions may help to reduce burden for informal caregivers of individuals affected by cancer, though there remains a need for rigorously designed, multicentred RCTs and to examine the long-term impact of psychosocial interventions for caregivers.

Purpose: The aim of the study was to examine the psychosocial problems and spiritual coping styles of the family caregivers related to patients receiving palliative care. Design and Methods: The research sample consisted of 76 family caregivers related to palliative care patients. The data collection method used were questionnaire forms. The two forms used were Hospital Anxiety Depression Scale and Religious Coping Methods Scale. Findings: The mean anxiety score of the participants was 10.86 ± 4.30, mean depression score was 9.38 ± 3.66, mean positive coping scale score was 25.31 ± 3.85, and mean negative coping scale score was 10.32 ± 3.38. Practice Implications: Healthcare professionals involved in palliative care are encouraged to evaluate the spiritual experiences of family caregiver to support their wellbeing.

Introduction: Increased life expectancy has led to an increased demand for family members to provide informal care for their older relatives in the home. Many studies suggest informal caregivers are at greater risk of experiencing symptoms of depression. However, there is a lack of research examining the effectiveness of psychological interventions targeting these symptoms alongside clinical and methodological moderators potentially associated with intervention effectiveness. This review aims to address this gap and will inform the development of a psychological intervention targeting depression among adult-child caregivers of older parents, given many studies show that among informal caregivers of older adults, adult children experience specific difficulties and needs for psychological support. Further, the lack of studies targeting adult children specifically necessitates conducting this review targeting caregivers of older adults in general.; Methods and Analysis: Randomised controlled trials of psychological interventions targeting symptoms of depression among informal caregivers will be identified via a systematic search of electronic databases (PubMed, Cumulative Index to Nursing and Allied Health Literature, Excerpta Medica DataBase, PsycINFO, Cochrane Library and Web of Science) and supplemented by handsearching of previous systematic reviews, reference and forward citation checking, and expert contact. If possible, a meta-analysis will be conducted to examine the: (1) effectiveness of psychological interventions for depression among informal caregivers of older adults, (2) effectiveness of psychological interventions for secondary outcomes such as anxiety, stress, caregiver burden, psychological distress, quality of life, well-being and self-efficacy and (3) moderating effects of clinical and methodological factors on effectiveness.; Ethics and Dissemination: Ethical approval will not be necessary for this study given primary data will not be collected. Results will inform the development of a psychological intervention for adult-child caregivers of older parents and will be disseminated through publication in peer-reviewed journals and conference presentations.; Prospero Registration Number: CRD42020157763. 

Background: Caring for a person with Alzheimer's disease (AD) is associated with significant mental burden e.g., depression and anxiety, and difficulties with social, familial, and professional functioning. To date, few studies have examined variables which would allow for a comprehensive and detailed study of the relationship between personal resources and caregiver health status, with a majority of studies focusing on factors that contribute to increased caregiver's burden. Moreover, the available evidence fails to address differences in the functioning of formal and informal carers. Paying proper attention to the problems of nursing home staff can help identify important risk factors. Therefore, this study compared mental health problems in informal and formal caregivers and examined the relationship between mental resources and mental health problems in both groups of caregivers. Methods: This cross-sectional study examined 100 formal (n = 50) and informal (n = 50) caregivers of AD patients. Personal resources were measured with the Social Support Questionnaire (SSQ), the Generalized Self-Efficacy Scale (GSES), and the Sense of Coherence Questionnaire (SCQ), while mental health was assessed with the Depression Assessment Questionnaire (DAQ) and the General Health Questionnaire (GHQ). Multivariate stepwise regression was performed separately for both investigated groups. Results: There were no significant differences between informal and formal caregivers in terms of psychological variables, i.e., sense of coherence, social support, self-efficacy, or mental health problems. In contrast, there were different significant predictors of mental health problems in both groups. Comprehensibility (SCQ) was a significant predictor of mental health problems measured by DAQ and self-efficacy (GSES) was a significant predictor of mental health problems measured by GHQ in informal caregivers. For formal caregivers, emotional support (SSQ) and comprehensibility (SCQ) were significant predictors of mental health problems measured by DAQ, while tangible support (SSQ) and meaningfulness (SCQ) were significant predictors of mental health problems measured by GHQ. Conclusions: Personal resources are significant predictors of mental health outcomes in caregivers of AD patients. Preventive actions should therefore include assessment of factors affecting caregivers' mental health in order to provide them with necessary care and create appropriate support groups.

Mechanisms underlying the manifestation of relatives' expressed emotion (EE) in the early stages of psychosis are still not properly understood. The present study aimed to examine whether relatives' psychological distress and subjective appraisals of the illness predicted EE dimensions over-and-above patients' poor clinical and functional status. Baseline patient-related variables and relatives attributes comprising criticism, emotional over-involvement (EOI), psychological distress, and illness attributions were assessed in 91 early psychosis patients and their respective relatives. Relatives were reassessed regarding EE dimensions at a 6-month follow-up. Relatives' psychological distress and illness attributions predicted criticism and EOI over-and-above patients' illness characteristics at both time points. Relatives' increased levels of anxiety, attributions of blame toward the patients, an emotional negative representation about the disorder, and decreased levels of self-blame attributions predicted EE-criticism at baseline. Relatives' anxiety and negative emotional representation of the disorder were the only significant predictors of EE-criticism at follow-up, whereas anxiety, attributions of control by the relative and an emotional negative representation about the disorder predicted EE-EOI both at baseline and follow-up assessments. Understanding the components that comprise and maintain EE attitudes should guide early psychosis caregivers in family interventions, enhancing proper management of psychological distress and reduction of negative appraisals about the illness. The prevention of high-EE attitudes over time in a sensitive period such as early psychosis might be critical in shaping the health of caregivers and the outcome of the affected relatives.

Background.: While today's older adults experience longevity, they often manage several chronic conditions and increasingly serve as informal caregivers for aging parents, children with life-long disabilities, and spouses. Older adult caregivers managing personal chronic illness often experience significant psychosocial hardships. Objective.: The primary purpose of this study was to explore the experiences of older adult caregivers in an online, interactive mindfulness intervention. Methods.: Self-reported older caregivers who participated in an online-based mindfulness program (n = 20) were recruited for semi-structured interviews. Participants were asked to provide feedback about any previous experience with mindfulness and/or meditation, hopes or goals held prior to the start of the program, desired expectations, motivation for joining, impressions of sessions, most beneficial topics, potential application of content, and any perceived effects. Participants' responses were analyzed using qualitative content analysis. Results.: Five themes emerged from the analysis: Managing the Comprehensive Effects of Caregiving, Openness to Meditation and Mindfulness, Course Engagement and Incremental Growth, Building Rapport through Shared Experiences, and Ongoing Application and Opportunities for Refinement. Participants reported both short-term post-exercise benefits such as increased calm, relaxation, and stress relief, as well as long-term positive outcomes. Notably, participants found the program's unique interactive feature to be particularly beneficial as a form of perceived social support. Conclusions.: Caregivers for older adults may derive benefit and potentially experience reduced subjective caregiver burden as a result of participating in a Mindfulness-Based Stress Reduction (MBSR) program, particularly when the program is augmented with a self-compassion approach and perceived social support.

The disease trajectory in chronic obstructive pulmonary disease (COPD) is characterised by a progressive decline in overall function, loss of independence and reduction of health-related quality of life. Although the symptom burden is high and care is often demanding, patients' and informal carers' experiences in living with advanced COPD are seldom described. This study sought to explore patients' and informal carers' experiences in living with advanced COPD and to understand their awareness about palliative care provision in advanced COPD. About 20 patients and 20 informal carers were recruited in a respiratory care service in Southern Switzerland. Semistructured individual interviews with participants were conducted on clinic premises and audio-recorded. Interviews lasted between 35 and 45 min. Data were analysed using thematic analysis. Living day to day with COPD, psychosocial dimension of the disease and management of complex care were the main themes identified. Patients and informal carers reported a range of psychological challenges, with feelings of guilt, discrimination and blame. Most of the participants had no knowledge of palliative care and healthcare services did not provide them with any information about palliative care approaches in advanced COPD. The reported psychological challenges may influence the relationship between patients, informal carers and healthcare professionals, adding further complexity to the management of this long-term condition. Further research is needed to explore new ways of managing complex care in advanced COPD and to define how palliative care may be included in this complex care network. 

Objective: Caregivers for patients with cancer have an integral role in maintaining patients' health. Although patients and caregivers experience the impact of cancer individually, studies suggest their health is interdependent. The objective of this review was to synthesize the literature on interdependent physical and psychological morbidity in patient-caregiver dyads published since 2016. Methods: A search of PubMed, CINAHL, Embase, and PsycInfo databases was performed using Cooper's recommendations and the Preferred Reporting Items for Systematic Reviews And Meta-Analyses Guidelines. Studies were included if they measured individual physical or psychological morbidity in cancer patient-caregiver dyads, evaluated interdependence, and were published in a peer-reviewed journal. Results: Twenty-three studies met criteria, characterized by mainly spousal dyads. Studies included a variety of cancers and methodologies. Findings were inconsistent, indicating varying interdependence. However, the studies demonstrated a stronger relationship between patients' and caregivers' psychological morbidity than between their physical morbidity. Conclusions: This review revealed a need for continued exploration of dyadic health interdependence. Future studies should consider samples of patients with a single type of cancer, testing cultural mediators/moderators, and using longitudinal designs.

Introduction: Informal caregivers provide the majority of care to individuals with chronic health conditions, benefiting the care recipient and reducing use of formal care services. However, providing informal care negatively impacts the mental health of many caregivers. E-mental health interventions have emerged as a way to provide accessible mental healthcare to caregivers. Much attention has been given to reviewing the effectiveness and efficacy of such interventions, however, factors related to implementation have received less consideration. Therefore, this mixed-methods systematic review will aim to examine factors associated with the effectiveness and implementation of e-mental health interventions for caregivers.; Methods and Analysis: Eligible studies published since 1 January 2007 will be searched for in several electronic databases (CINAHL Plus with Full Text, the Cochrane Library, EMBASE, PsycINFO, PubMed and Web of Science), clinical trial registries and OpenGrey, with all screening steps conducted by two independent reviewers. Studies will be included if they focus on the implementation or effectiveness of e-mental health interventions designed for informal adult caregivers of adults with cancer, heart disease, stroke, diabetes, dementia or chronic obstructive pulmonary disease. Pragmatic randomised controlled trials quantitatively reporting on caregiver anxiety, depression, psychological distress or stress will be used for a qualitative comparative analysis to identify combinations of conditions that result in effective interventions. Qualitative and quantitative data on implementation of e-mental health interventions for caregivers will be integrated in a thematic synthesis to identify barriers and facilitators to implementation. These results will inform future development and implementation planning of e-mental health interventions for caregivers.; Ethics and Dissemination: Ethical approval is not required for this study as no primary data will be collected. Results will be disseminated in the form of a scientific publication and presentations at academic conferences and plain language summaries for various stakeholders.; Prospero Registration Number: CRD42020155727. 

Introduction: Assistive technology and telecare (ATT) may alleviate psychological burden in informal caregivers of people with dementia. This study assessed the impact of ATT on informal caregivers' burden and psychological well-being.; Methods: Individuals with dementia and their informal caregivers were recruited to a randomized-controlled trial assessing effectiveness of ATT. Caregivers were allocated to two groups according to their cared-for person's randomization to a full or basic package of ATT and were assessed on caregiver burden, state anxiety, and depression. Caregivers' data from three assessments over 6 months of the trial were analyzed.; Results: No significant between- or within-group differences at any time point on caregivers' burden, anxiety, and depression levels were found.; Discussion: Full ATT for people with dementia did not impact caregivers' psychological outcomes compared to basic ATT. The length of follow up was restricted to 6 months. 

Background: Family caregivers provide the majority of care for people with Parkinson's disease (PD) in the palliative care phase. For many this is a demanding experience, affecting their quality of life. Objective: We set out to map the experiences of bereaved family caregivers during the period of informal care in the palliative care phase as well as after the death of their loved one with PD. Methods: Ten bereaved family caregivers participated in this qualitative study. Semi-structured interviews were conducted and interpretative phenomenological analysis was used executed. Results: We identified four main themes. 1) Feeling like a professional caregiver: while caring for a person with PD, the family caregivers took over many roles and tasks of the person with PD. 2) Healthcare professionals do not always know what PD really means: most interviewees had negative experiences with knowledge and understanding of PD of, especially, (practice) nurses. 3) Being on your own: many respondents had felt highly responsible for their loved one's care and lacked time and space for themselves. Grief and feelings of guilt were present during the caregiving period and after death. 4) Being behind the times: to provide palliative care in line with patients' preferences and to feel prepared for the palliative care phase of PD, proactive palliative care planning was considered important. However, the interviewees told that this was most often not provided. Conclusion: These findings indicate that caring for a person with PD in the palliative care phase is a demanding experience for family caregivers. They experience psychological problems for many years before and after the death of the person with PD. Increasing healthcare professionals' awareness of family and bereaved caregivers' needs may mitigate these long-term detrimental effects.

Objectives: • Describe the implications of emotional processing of stressful events for hospice family caregivers. • Interpret preliminary findings from textual data analysis of hospice family caregiver diaries.  Importance: Evidence suggests that meaning-making and emotional processing can improve home hospice family caregivers' (HFCs) well-being. Previous work has used diary writing to process stressful events; in the current study, HFCs were asked to record brief daily audio diaries.  Objective(s): To determine the feasibility of capturing audio diaries and describe diary content.  Method(s): In an ongoing multi-site, multi-method prospective longitudinal study, HFCs of cancer patients report daily fluctuation of patient and their own symptoms via an automated telephone system. Additionally they are randomly assigned to: discuss additional symptoms or to discuss their thoughts/feelings. Thirty-six (85.7%) participants to date have completed at least one audio diary. For this preliminary analysis, we selected 14 diary recordings/condition (n=28) to describe and compare.  Results: Participants are 78.6% female, on average 53.0 years old, and most are a spouse/partner (46.4%) or a child (35.7%) caregiver. Audio data were transcribed and aggregated by condition. Both Linguistic Inquiry Word Count (LIWC) and NVivo 12 were used to analyze word use. Time was the most common theme in both conditions, but was more common in the symptom condition (p=.08). There was no difference in overall negative/positive word valence use, with 23% positivity and 77% negativity across both groups. However, a significant difference in the use of specific emotion words was found; the thoughts/feeling condition used more anger-related words (p=.04), while the symptom condition used more anxiety words (p=.003).  Conclusion(s): Our preliminary findings suggest that most HFCs will use audio diaries to express concerns and that the focus of open-ended prompts may facilitate different emotional expression.  Impact: Low-cost, easy-to-use audio diaries may be a useful emotional processing tool for HFCs. Future research is warranted of a larger HFC sample examining their repeated daily use of audio diaries to assess for impact on emotional well-being and bereavement adjustment.

There is a lack of evidence on the health-related impacts of being a young carer. This article takes a population approach to young carer research specifically to investigate the prevalence of young carers and explore differences in their health, well-being and future expectations. This is a cross-sectional regression analysis. Secondary analysis of a representative Scottish secondary school survey was undertaken. Pupils with caring responsibilities were identified, and their outcomes in terms of physical and mental health and postschool expectations were analysed. Almost one in eight (12%) surveyed reported caring for someone in the household. Young carers' physical and mental health and psychosocial outcomes were significantly poorer, and they were significantly less likely to see themselves entering further or higher education. This research suggests that Glasgow could have many more young carers than previously thought and provides clear evidence that young people's outcomes are influenced by carer status. • The number of young carers in Glasgow, Scotland, was higher than previously thought. • One in twelve of the school pupils surveyed provided informal care. • Young carers are significantly less likely to see themselves going on to further or higher education. • Young carers are more likely to report psychosocial difficulties and mental health problems. 

Objective: Psychological interventions reduce the impact of psychosis, but widescale implementation is problematic. We tested the feasibility of group acceptance and commitment therapy for Psychosis (G‐ACTp), delivered by frontline staff, and co‐facilitated by service‐user experts‐by‐experience (SU‐EbyE), for service‐users and informal caregivers (ISRCTN: 68540929). We estimated recruitment/retention rates and outcome variability for future evaluation. Methods: Staff and SU‐EbyE facilitators completed 1‐day workshops, then delivered closely supervised G‐ACTp, comprising four sessions (weeks 1–4) and two boosters (10 and 12 weeks). Participants recruited from adult community psychosis services were randomized to receive G‐ACTp immediately or after 12 weeks, completing outcome assessments at 0, 4, and 12 weeks. Service‐use/month was calculated for 1‐year pre‐randomization, weeks 0–12, and 5‐year uncontrolled follow‐up. Results: Of 41 facilitators trained (29 staff, 12 SU‐EbyE), 29 (71%; 17 staff, 12 SU‐EbyE) delivered 18 G‐ACTp courses. Participant refusal rates were low (9% of service‐users [10/112]; 5% of caregivers [4/79]); 60% of those invited to participate attended ≥1 G‐ACTp session (64% of service‐users [39/61]; 56% of caregivers [35/63]). Randomization of facilitators and participants proved problematic and participant follow‐up was incomplete (78% [66/85]; 82% of service‐users [36/44]; 73% of caregivers [30/41]). Effect sizes ranged from very small to large mostly favouring treatment. Service‐use reductions require cautious interpretation, as very few participants incurred costs. Conclusions: Implementation appears feasible for service‐users; for caregivers, retention needs improving. Outcome variability indicated n = 100–300/arm followed up (α = 0.05, 90% power). Methodological limitations' mean replication is needed: identified sources of potential bias may be reduced in a cluster randomized design with sessional outcome completion. Practitioner points: Group acceptance and commitment therapy can be successfully adapted for people with psychosis and their caregivers.Implementation (training and delivery) is possible in routine community mental health care settings.Clinical and economic outcomes are promising, but replication is needed.Recommendations are made for future studies. 

This qualitative study was carried out to determine the burden of care on Turkish caregivers of patients with substance use disorder. The sample included relatives of 42 patients hospitalized in the Akdeniz University Alcohol and Drug Addiction Research and Application Center. Individual in-depth, open semi-structured interviews were used for data collection. Moreover, demographic questions and an interview guide with questions were also used. According to the results of this study, the following themes were evaluated: difficulties experienced, coping, and needs. The findings showed that substance abuse has adverse consequences and negatively affects both the patients and their relatives in terms of economic, psychological, and social aspects. Furthermore, because of the social stigma of substance abuse, the families receive very limited social support from the environment. This weakens the well-being of the family members and increases intrafamily conflicts. We conclude that ensuring the well-being of the caregivers of patients with substance use disorder is useful in maintaining a successful treatment of addiction. Thus, policymakers should include the relatives of patients with substance use disorder in prevention and intervention programs to increase the effectiveness of the interventions. 

Background: Hospitalization in the Intensive Care Unit (ICU) brings about psychological and physical symptoms in patients' family members. Family Intensive Care Unit Syndrome (FICUS) is a term used to explain the psychological symptoms of the family of a patient in response to the patient's admission to the ICU. The purpose of this study was to define FICUS along with its symptoms and predictors. Materials and Methods: The Web of Science, PubMed, Scopus, Google Scholar, and SID databases were searched for literature published in 2005-2018 with the keywords "FICUS," "intensive care unit," "family," "caregivers," "anxiety," "depression," and "post-traumatic stress disorder" in their title and abstract. The strategy for conducting an integrative review provided by Whittemore and Knafl (2005) was used in this study. Results: Twenty articles were included in the final data analysis. Following the patient's admission to the ICU, family members experience multiple psychological symptoms such as FICUS. The most commonly reported symptoms were anxiety, depression, post-traumatic stress disorder (PTSD), complicated grief, sleep disorder, stress, and fatigue. The low education level, having a critically ill spouse, adequate support, financial stability, preference for decision making, understanding of the disease process, anxiety, depression, or previous acute stress were predictors of FICUS. Conclusions: On the basis of the results, families also experience physical symptoms, so the FICUS is not limited to the occurrence of psychological symptoms. This study found that there is no universal definition for the term "FICUS" in the research literature. Thus, further research is needed to explore FICUS in the health field.

Objectives: This study systematically reviewed existing qualitative evidence of family members' experiences prior to the initiation of mental health services for a loved one experiencing their first episode of psychosis (FEP). Methods: A meta-synthesis review of published peer-reviewed qualitative studies conducted between 2010 and 2019 were included. Keyword searches were performed in four electronic databases and the reference lists of primary manuscripts. Two independent reviewers used the Critical Appraisal Skills Programme (CASP) qualitative checklist to assess methodological quality of each study. Results: A total of 365 articles were initially identified and 9 were articles identified in a secondary review and literature search. A total of 21 met inclusion criteria. Of those included in this review 169, mothers were the primary family to recall experiences. The meta-synthesis identified four major themes related to family member experiences prior to the initiation of mental health services for FEP: the misinterpretation of signs, the emotional impact of FEP on family members, the effect of stigma on family members, and engaging with resources prior to mental health services for FEP. Conclusions: Additional research is needed to develop healthy communication strategies that effectively deliver educational information about psychosis. This meta-synthesis also identified the need to understand help-seeking behaviors among families of those with FEP in effort to reduce the duration of untreated psychosis and improve pathways to care often initiated by a family member.

Aim: To evaluate the effects of a psychoeducational intervention compared with an education programme to strengthen quality of life, psychosocial adjustment, and coping in people with Parkinson's disease and their informal caregivers. Design: A quasi‐experimental study was performed with repeated measures at baseline, after the intervention and 6 months post‐intervention. Methods: The study was carried out at seven primary care centres from 2015‐2017. A total of 140 people with Parkinson's and 127 informal caregivers were allocated to the experimental and the control groups. The experimental group received a 9‐week psychoeducational intervention, whereas the control group received a 5‐week education programme. Repeated measures ANOVA were used to test differences in quality of life, psychosocial adjustment, and coping between the experimental and control groups and over time. Results: Patients and informal caregivers in both the experimental and control groups showed significantly better psychosocial adjustment at the post‐intervention measurement compared with baseline data. We also found significantly greater quality of life in patients and coping skills in caregivers after the end of the interventions in the experimental and control groups. Nevertheless, no significant differences were identified on the outcomes at the 6‐month post‐intervention measurement. Conclusion: The effect of the psychoeducational intervention was not different from the effect of the education programme. The strategies applied in both interventions followed a group approach led by a multidisciplinary team covering information about PD, healthy lifestyles, and social resources. They might be easily sustained in Primary Care to improve care for people with Parkinson's and informal caregivers.

Introduction: Informal caregivers play a major role in the support and maintenance of community patients with severe psychiatric disorders. A pilot study showed that an individualised brief intervention such as the Ensemble programme leads to significant improvements in psychological health state and optimism.; Methods and Analysis: This randomised controlled trial aims to compare the efficacy of using Ensemble in improving informal caregivers' psychological health states and the ability to play an active role in their situations with that of support as usual. Improvements on the psychological health global index will be measured three times (T0-pre, T1-post and T3 2 months follow) with standardised questionnaires (the Global Severity Index of Brief Inventory Symptoms, the Life Orientation Test-Revised, the 36-item Medical Outcome Study Short-Form Health Survey and the French Zarit Burden Interview). Differences between groups in post-test and pretest values will be examined using an analysis of covariance for each outcome variable. The severity of illness measured by the Social and Occupational Functioning Assessment Scale will also be collected at T0 and T2 to compare eventual patient improvements. At the end of the programme, the experiences of the 20 patients participating in the Ensemble programme will be evaluated qualitatively.; Ethics and Dissemination: The research protocol received full authorisation from the Human Research Ethics Committee of the Vaud state, Switzerland. The principal paper will concern the results of the experimental design used to test the Ensemble programme. The research team will prioritise open access publications.; Trial Registration Number: NCT04020497. 

Background: Caregivers play a pivotal role in maintaining an economically viable health care system, yet they are characterized by low levels of psychological well-being and consistently report unmet needs for psychological support. Mobile app-based (mobile health [mHealth]) interventions present a novel approach to both reducing stress and improving well-being.; Objective: This study aims to evaluate the effectiveness of a self-guided mobile app-based psychological intervention for people providing care to family or friends with a physical or mental disability.; Methods: In a randomized, single-blind, controlled trial, 183 caregivers recruited through the web were randomly allocated to either an intervention (n=73) or active control (n=110) condition. The intervention app contained treatment modules combining daily self-monitoring with third-wave (mindfulness-based) cognitive-behavioral therapies, whereas the active control app contained only self-monitoring features. Both programs were completed over a 5-week period. It was hypothesized that intervention app exposure would be associated with decreases in depression, anxiety, and stress, and increases in well-being, self-esteem, optimism, primary and secondary control, and social support. Outcomes were assessed at baseline, postintervention, and 3-4 months postintervention. App quality was also assessed.; Results: In total, 25% (18/73) of the intervention participants were lost to follow-up at 3 months, and 30.9% (34/110) of the participants from the wait-list control group dropped out before the postintervention survey. The intervention group experienced reductions in stress (b=-2.07; P=.04) and depressive symptoms (b=-1.36; P=.05) from baseline to postintervention. These changes were further enhanced from postintervention to follow-up, with the intervention group continuing to report lower levels of depression (b=-1.82; P=.03) and higher levels of emotional well-being (b=6.13; P<.001), optimism (b=0.78; P=.007), self-esteem (b=-0.84; P=.005), support from family (b=2.15; P=.001), support from significant others (b=2.66; P<.001), and subjective well-being (b=4.82; P<.001). On average, participants completed 2.5 (SD 1.05) out of 5 treatment modules. The overall quality of the app was also rated highly, with a mean score of 3.94 out of a maximum score of 5 (SD 0.58).; Conclusions: This study demonstrates that mHealth psychological interventions are an effective treatment option for caregivers experiencing high levels of stress. Recommendations for improving mHealth interventions for caregivers include offering flexibility and customization in the treatment design.; Trial Registration: Australian New Zealand Clinical Trial Registry ACTRN12616000996460; https://www.anzctr.org.au/Trial/Registration/TrialReview.aspx?id=371170. 

Informal caregivers are at risk of being overwhelmed by various sources of suffering while caring for their significant others. It is, therefore, important for caregivers to take care of themselves. In the self-care context, mindfulness has the potential to reduce caregiver suffering. We studied the effect of a single session of 20-minute mindful breathing on the perceived level of suffering, together with the changes in bispectral index score (BIS) among palliative care informal caregivers. This was a randomized controlled study conducted at the University of Malaya Medical Centre, Malaysia. Forty adult palliative care informal caregivers were recruited and randomly assigned to either 20-minute mindful breathing or 20-minute supportive listening. The changes in perceived suffering and BIS were measured preintervention and postintervention. The reduction in suffering score in the intervention group was significantly more than the control group at minute 20 (U = 124.0, n1 = n2 = 20, mean rank1 = 24.30, mean rank2 = 16.70, z = −2.095, P =.036). The reduction in BIS in the intervention group was also significantly greater than the control group at minute 20 (U = 19.5, n1 = n2 = 20, mean rank1 = 29.52, mean rank2 = 11.48, z = −4.900, P <.0001). Twenty minutes of mindful breathing was more efficacious than 20 minutes of supportive listening in the reduction in suffering among palliative care informal caregivers.

Background: Sleep disturbance is an issue reported by caregivers. Waking at night is a feature of dementia and by proxy, sleep disturbance among caregivers is reported to be high. Little is known about the characteristics of dementia caregivers' sleep and the factors that may influence sleep disruption. The purpose of this study was to investigate the sleep characteristics and disturbances of Australian caregivers of a person living with dementia. In addition, it evaluated the psychological wellbeing of caregivers by evaluating associations between mood and sleep in this population. Methods: This study used a cross-sectional, descriptive, correlation design. Participants were recruited with the assistance of Alzheimer's Australia, Dementia Australia and targeted social media advertising. In total, 104 adult, primary, informal caregivers of people with dementia participated, completing a questionnaire on demographic characteristics, the Depression, Anxiety and Stress Scale (DASS-21) and the Pittsburgh Sleep Quality Index (PSQI). Results: In this study, 76% of caregivers were female who had been caring for someone living with dementia on average for 4.8 years. 44% of participants had two or more co-morbidities namely cardiovascular disease, osteoarthritis and diabetes. 94% of participants were poor sleepers with 84% with difficulty initiating sleep and 72% reporting having difficulty maintaining sleep. Overall, psychological distress was common with high levels of moderate to severe depression, anxiety and stress. Global PSQI scores were significantly positively associated with depression and anxiety, with the strongest correlation seen with stress scores. Depression scores were also moderately associated with daytime dysfunction. Stress was identified as a significant predictor of overall sleep quality. Conclusions: Sleep problems are common within the population of dementia caregivers. Due to the nature and duration of caregiving and the progression of dementia of the care recipient, there is the potential for a decline in the caregivers' mental and physical health. Caregivers of those living with dementia are more likely to have comorbidities, depression, anxiety and stress. Sleep quality is correlated with emotional distress in dementia caregivers although the direction of this association is unclear. Therefore, sleep and psychological wellbeing may be intertwined, with improvements in one aspect resulting in a positive impact in the other.

Objective: This study aims to develop and validate the stigma assessment tool for family member caregivers of patients with mental illness (SAT-FAM). Methods: This study was conducted in three phases: (1) explicate the concept of stigma towards family caregivers of patients with mental illness, (2) develop and iteratively optimise a preliminary version of the SAT-FAM, and (3) test the psychometric properties of the final version of the SAT-FAM. In phase 1, 14 family caregivers of patients with mental illness were interviewed for qualitative data collection and analysis. Four themes emerged: people's reaction and attitude, compassion with fear, rejection and loneliness, and confusion about mental illness. In phase 2, the first draft of the SAT-FAM with 38 items was developed. Based on the content validity index, each item was evaluated by 15 experts using a 4-point scale (1 = not relevant; 4 = very relevant). 15 family member caregivers of patients with mental illness were randomly selected to complete the face validity form on a Likert scale ranging from 1 (strongly disagree) to 4 (strongly agree). In phase 3, 286 family caregivers of people with mental illness were recruited for exploratory factor analysis. Internal consistency (Cronbach's coefficient) and test-retest reliability were measured. Results: The final draft of the SAT-FAM comprised 30 items in four factors: shame and discrimination, social interaction, emotional reaction, and avoidance behaviours. The internal consistency (Cronbach's alpha) was >0.89 for all factors. The test-retest reliability among 30 family caregivers was good (0.76). Conclusions: The SAT-FAM is a valid and reliable self-report instrument for assessing stigma towards family caregivers of patients with mental illness. It enables a practical way of evaluating interventions aimed at reducing stigma. 

Background: End-of-life caregiving frequently is managed by friends and family. Studies on hastened death, including aid in dying or assisted suicide, indicate friends and family also play essential roles before, during, and after death. No studies have compared the experiences of caregivers in hastened and non-hastened death. The study aim is to compare end-of-life and hastened death caregiving experience using Hudson's modified stress-coping model for palliative caregiving. Method: Narrative synthesis of qualitative studies for caregivers at end of life and in hastened death, with 9946 end-of life and 1414 hastened death qualitative, peer-reviewed research articles extracted from MEDLINE, CINAHL, Web of Science, and PsycINFO, published between January 1998 and April 2020. Results: Forty-two end-of-life caregiving and 12 hastened death caregiving articles met inclusion criteria. In both end-of-life and hastened death contexts, caregivers are motivated to ease patient suffering and may put their own needs or feelings aside to focus on that priority. Hastened death caregivers' expectation of impending death and the short duration of caregiving may result in less caregiver burden. Acceptance of the patient's condition, social support, and support from healthcare professionals all appear to improve caregiver experience. However, data on hastened death are limited. Conclusion: Caregivers in both groups sought closeness with the patient and reported satisfaction at having done their best to care for the patient in a critical time. Awareness of anticipated death and support from healthcare professionals appear to reduce caregiver stress. The modified stress-coping framework is an effective lens for interpreting caregivers' experiences at end of life and in the context of hastened death. 

Aim: The first episode of psychosis is a challenging time for both patients and those who care for them. Although literature on treatment is plentiful, literature on how to best support caregivers is more scarce. This review was undertaken to better understand the caregiver experience, determine which interventions most effectively alleviate their burden and examine which other factors may affect outcomes. Methods: Articles were retrieved from PubMed and OVID using the following search terms: first episode psychosis (FEP), schizophrenia, caregiver, intervention and burden in various combinations. Only peer‐reviewed articles germane to FEP caregiver experience and interventions written in English were included. Results: Caregivers can experience grief, guilt and anxiety during this time. While concerned for their loved one, their own lives take a back seat and their mental and physical health are adversely affected. Some are better prepared to cope and are typically warm, decisive, confident and optimistic. Their families are organized and flexible. Others are less prepared and are more likely to have poor self‐esteem, use avoidant coping strategies and be overly critical. Their families are controlling and have difficulty with communication and balance. These caregivers stand to benefit most from interventions. Conclusions: Effective interventions incorporate psychoeducation, problem solving strategies, peer support and clinician guidance. A higher level of interaction with facilitators and peers is associated with better results. Benefits include decreases in caregiver burden, depressive and anxious symptoms and feelings of shame and isolation. Although the literature has yet to isolate the key factors of a successful intervention, this review provides practical suggestions for clinicians and further illustrates the need for more research. 

Objectives: To illustrate specific psychosocial interventions aimed at improving self-efficacy among family caregivers enrolled in the Care Ecosystem, a model of navigated care designed to support persons with dementia and their primary caregivers. Enrolled family caregivers work with unlicensed care team navigators who are trained in dementia care and provide information, linkages to community resources, and emotional support by phone and email. Method: We conducted focus groups and interviews with the care team navigators to identify the approaches they used to target caregiver self-efficacy. We assessed mean self-efficacy scores in a sample of 780 family caregivers and selected three exemplary cases in which the caregivers had low self-efficacy scores at baseline with significantly higher scores after six months of participation in the Care Ecosystem intervention. Results: Multiple psychosocial strategies were utilized by care team navigators working with patients with dementia and their family caregivers. Using thematic coding we identified three categories of Care Team Navigator intervention: emotional, informational, and instrumental support. These are consistent with a psychosocial approach to building self-efficacy. Discussion: Self-efficacy represents a family caregiver's knowledge and preparedness in managing the challenges of care. Psychosocial support shows benefit in improving caregiver self-efficacy that in turn, may positively influence caregiver health and well-being. The findings in this manuscript demonstrate how a model of navigated care can positively impact self-efficacy among dementia family caregivers.

This report describes the evaluation of the psychometric and clinimetric properties of nine self-report measures completed by informal care partners of individuals with mild cognitive impairment or dementia in Parkinson's disease and dementia with Lewy bodies. One hundred thirty-six care partners completed measures on relationship satisfaction, burden, stress, mood, resilience, health, quality of life, and feelings related to care provision. Psychometric properties, such as internal consistency, convergent validity, floor and ceiling effects, completion rate and data missingness, as well as clinimetric properties, such as time to administer, ease of scoring, readability and availability of the scales, were examined. Additionally, the design of the measure development studies was assessed with the 2018 COnsensus-based Standards for the selection of health Measurement Instruments (COSMIN) Risk of Bias checklist. Participants were mostly married women (>85%) with a mean age of 69.4 years. The methodological quality of the design of all measure development studies was "inadequate." Five widely applied measures (Zarit Burden Interview, Hospital Anxiety and Depression Scale, Short Form 12 Health Survey, Relatives' Stress Scale, and EuroQoL-5D) and two less researched instruments (Brief Resilience Scale and Relationship Satisfaction Scale) had high internal consistency and completion rates, moderate to strong convergent validity, low missingness and floor effects, and excellent clinical utility ratings. Two scales (Dyadic Relationship Scale and Family Caregiving Role) received poor psychometric ratings, and their usage among informal care partners is not recommended. In conclusion, well-validated and widely used measures received strong psychometric and clinimetric ratings. Future studies are required to determine the most reliable, valid and robust caregiver-reported measures.

Background: The negative interactions between Alzheimer's disease (AD) patients and their caregivers may provoke criticism, hostility, and emotional overinvolvement that characterise highly expressed emotion (EE) attitudes. In this study, we hypothesised that affective temperament traits of AD caregivers are related to their high EE levels independent from other patient and caregiver characteristics. Methods: Eighty AD patients were assessed through Clinical Dementia Rating Scale (CDR), and Mini‐Mental State Examination. Expressed Emotion Scale (EES), Temperament Evaluation of Memphis, Pisa, Paris and San Diego auto‐questionnaire, and Hamilton Depression Rating Scale were applied to the caregivers. The high (n = 41) and low EE caregivers (n = 39) were compared with respect to some sociodemographic and clinical characteristics of the patients and caregivers, and affective temperament traits of caregivers. The associations of caregiver EES scores with multiple variables related to patients and caregivers were examined by Pearson correlation tests. We performed multiple linear regression analysis to determine the possible predictors of total EES scores. Results: High EE caregivers had significantly higher depressive, cyclothymic, and anxious temperament traits than in low EE subjects. A weak positive correlation was found between the total EES scores and Personal Care scores of CDR. Home and hobbies subscale scores of CDR had a moderately significant positive correlation with total EES scores. There was also moderate significant positive correlations between total EE scores and depressive, cyclothymic, anxious, and irritable temperament traits. Linear regression analysis indicated that depressive temperament significantly predicted the high levels of caregiver EE. Conclusion: These findings suggest that caregivers' depressive temperament is predominantly related to their EE levels even after controlling for the severity of AD, and lower educational level of caregivers. Our results may provide evidence that high EE might be a reflection of caregivers' depressive temperament traits, in accordance with the trait hypothesis. 

In this article, we explore the psychological process through which Vietnamese family caregivers adjust to their role as primary caregivers for their relatives with dementia. The study adopted a constructivist grounded theory approach to collect data with 30 face-to-face, semi-structured interviews with 20 self-identified primary caregivers of older adults with dementia in Vietnam. The core adjustment process, consisting of four stages (Experience, Acknowledgment, Experiment, and Acceptance [EAEA]), to caregiving role emerged from the data. The EAEA process highlights the importance of self-perception, self-perception focused strategies, and acceptance of caregivers and suggests an adjustment process to their "becoming self" in caregiving. The EAEA process was reflected in the transactional relationship with caregiver personal factors (demographic and relational characteristics with care recipients, personal beliefs in and commitments to caregiving, and personal history of caregiving and coping with past adversity) and structural factors (cultural values and norms, social support, and social pressure).

Dementia rates are growing (WHO, 2017) and as dementia is associated with a loss of independence, carers are required. Caring for a dementia patient places great demands on the carer’s resources (WHO, 2017). Previous research has indicated that whilst carers are at increased risk of poor mental and physical health (Diener & Chan, 2011; Mahoney, Regan, Katona, & Livingston, 2005; Mausbach, Patterson, Rabinowitz, Grant, & Schulz, 2007), there are some effective protective measures against these increased risks (Cooper et al., 2012; Elvish, Lever, Johnstone, Cawley, & Keady, 2013; Kaufman, Kosberg, Leeper, & Tang, 2010). Aims: This study aimed to evaluate a dementia support group, in relation to protective measures including social and emotional support, in a real-life rural setting from a carers’ perspective. Method: Fourteen informal carers of dementia patients were interviewed about their experiences of attending dementia support groups. The interviews were transcribed verbatim and subject to thematic analysis. Findings: The analysis showed that attendance to the support group was associated with subjective well-being and that social support provided by the group was both stimulating and supportive for the carers. Participants valued the opportunity to share their experiences of being a carer with fellow group members and finding out about resources. Frequently, participants reported that the time period surrounding their loved one receiving a diagnosis of dementia was traumatic and they needed time to adjust to their new circumstances before attending a support group. Conclusions: Implications for wider employment of support groups as a format of support for carers are discussed.

Objectives Recently, research has focused on understanding the needs of persons with early‐onset dementia and their family caregivers who often experience stigmatic beliefs. However, to date, research has not provided a thorough and deep understanding of the stigma formation process and its implications for this population. Thus, the aim of the present study was to explore the stigma formation process as experienced by family members as informal caregivers of persons with early‐onset dementia, and professionals as formal caregivers who are involved in the development, management and provision of services. Method We conducted three focus groups with 16 participants, including spouses of a person with early‐onset dementia and professionals. The focus groups’ transcripts were analysed following a thematic analysis procedure. Results Results indicated that both family members and professionals encounter stigmatic experiences because of their association with younger persons with dementia. Lack of knowledge emerged as the main antecedent and emotional burden as the main consequence of stigma. Conclusion Stigmatic experiences emerged as a pervasive and complex phenomenon among formal and informal caregivers of persons with early‐onset dementia, suggesting the need to developing a comprehensive and integrated approach to reduce them at the individual, professional and societal levels.

Effective and accessible interventions for indicated prevention of depression are necessary and lacking, especially for informal caregivers. Although telephone-based interventions could increase the accessibility for caregivers, randomized controlled trials are scarce, with no examination of prevention to date. Moreover, the efficacy of specific therapeutic components in preventive cognitive-behavioral programs is unknown. The main objective of this study was to evaluate the efficacy of a telephone-administered psychological preventive intervention in informal caregivers with high depressive symptoms. A total of 219 caregivers were randomized to a cognitive-behavioral conference call intervention (CBCC, n = 69), a behavioral-activation conference call intervention (BACC, n = 70), or a usual care control group (CG, n = 80). Both interventions consisted of five 90-minute group sessions. At the post-intervention, incidence of depression was lower in CBCC and BACC compared to CG (1.5% and 1.4% vs. 8.8%). Relative risk was 0.17 for the CBCC and 0.16 for the BACC, and the number-needed-to-treat was 14 in both groups. Depressive symptoms were significantly lower in BACC and BACC groups compared to CG (d = 1.16 and 1.29), with no significant differences between CBCC and BACC groups. The conference call intervention was effective in preventing depression and the behavioral-activation component (BACC) was comparable to the CBCC intervention.

Background: Patients' negative illness perceptions and beliefs about cardiac rehabilitation (CR) can influence uptake and adherence to CR. Little is known about the interpartner influence of these antecedent variables on quality of life of patients with coronary artery disease (CAD) and their family caregivers. The aims of the study were: 1) to assess differences in illness perceptions, beliefs about CR and quality of life between patients with CAD and their family caregivers upon entry to a CR programme and at 6 months follow-up; and 2) to examine whether patients' and caregivers' perceptions of the patient's illness and beliefs about CR at baseline predict their own and their partner's quality of life at 6 months. Methods: In this longitudinal study of 40 patient-caregiver dyads from one CR service, patients completed the Brief Illness Perception Questionnaire and Beliefs about Cardiac Rehabilitation Questionnaire at baseline and 6 months; and caregivers completed these questionnaires based on their views about the patient's illness and CR. The Short-Form 12 Health Survey was used to assess patients' and caregivers' perceived health status. Dyadic data were analysed using the Actor-Partner Interdependence Model. Results: Most patients (70%) were men, mean age 62.45 years; and most caregivers (70%) were women, mean age 59.55 years. Caregivers were more concerned about the patient's illness than the patients themselves; although they had similar scores for beliefs about CR. Patients had poorer physical health than caregivers, but their level of mental health was similar. Caregivers' poorer mental health at 6 months was predicted by the patient's perceptions of timeline and illness concern (i.e. partner effects). Patient's and caregiver's illness perceptions and beliefs about CR were associated with their own physical and mental health at 6 months (i.e. actor effects). Conclusions: Overall, the patients and caregivers had similar scores for illness perceptions and beliefs about CR. The actor and partner effect results indicate a need to focus on specific illness perceptions and beliefs about CR, targeting both the individual and the dyad, early in the rehabilitation process to help improve patients and caregivers physical and mental health (outcomes). 

Family caregivers of people with dementia (PWD) have a heavy care burden. Affiliate stigma is the stigma internalized by individuals associated with PWD. Limited research has addressed the affiliate stigma among caregivers of PWD and its influence on caregiver burden. Thus, our study investigated the burden of caregivers of PWD and its relationship with affiliate stigma. In addition, we examined the factors related to affiliate stigma. This cross-sectional study was conducted in a general hospital in Taiwan. We recruited 270 PWD and their family caregivers from the outpatient department. Relevant demographic and clinical assessment data of the patients and caregivers were evaluated. Regression analysis was performed to examine the factors associated with affiliate stigma. In total, 23.7% of the family caregivers had depression and 37.4% had anxiety. Male caregivers had higher levels of anxiety and heavier care burdens related to affiliate stigma compared with female caregivers. Moreover, characteristics such as younger age and low levels of dependence in daily activities among PWD were associated with increased affiliate stigma. A higher family caregiver burden was related to more severe affiliate stigma. Interventions for decreasing the family caregiver burden might reduce the effect of affiliate stigma. 

The role of informal caregiver of cancer patients is considered a situation of chronic stress that could have impact on cognitive functioning. Our aim was to evaluate differences in perceived stress, subjective memory complaints, self-esteem, and resilience between caregivers and non-caregivers, as well as the possible mediational role of burden in caregivers. The sample was composed of 60 participants divided into two groups: (1) Primary informal caregivers of a relative with cancer (CCG) (n = 34); and (2) non-caregiver control subjects (Non-CG) (n = 26). All participants were evaluated through a battery of tests: Socio-demographic questionnaire, subjective memory complaints questionnaire (MFE-30), Rosenberg Self-Esteem Scale, resilience (CD-RISC-10), and perceived stress scale (PSS). The CCG group also completed the Zarit burden interview. Results indicated that CCG displayed higher scores than Non-CG in MFE-30 (p = 0.000) and PSS (p = 0.005). In the CCG group, Pearson correlations indicated that PSS showed a negative relationship with resilience (p = 0.000) and self-esteem (p = 0.002) and positive correlation with caregiver’s burden (p = 0.015). In conclusion, CCG displayed higher number of subjective memory complaints and higher perceived stress than Non-CG, whereas no significant differences were obtained on self-esteem and resilience. These results could aid in designing new intervention strategies aimed to diminish stress, burden, or cognitive effects in informal caregivers of cancer patients. 

Objective Cancer diagnosis affects patients, their families, and their caregivers in particular. This study focused on the validation of the CareGiver Oncology Quality of Life (CarGOQoL) questionnaire in Portuguese caregivers of patients with multiple myeloma, from the caregiver's point of view. Method This was a cross-sectional study with 146 caregivers of patients with multiple myeloma from outpatient medical oncology and clinical hematology consultations from five hospitals in north and central Portugal. Participants were assessed on quality of life (QoL), psychological morbidity and social support. Result The Portuguese version maintains 17 of the original 29 items version, maintaining general coherence and a dimensional structure that is clinically interpretable. Reliability findings indicated good internal consistency for the total scale (0.86) and respective subscales (0.75 to 0.88), which is in agreement with the alpha values from the previous CarGOQoL validation study for the corresponding subscales (0.74 to 0.89) and total scale (0.90). Significance of results The CarGOQoL is a reliable and valid tool for clinical trials and intervention programs to assess QoL in caregivers of myeloma patients. Future studies should validate the adapted version in caregivers of other types of cancer patients including other chronic diseases. 

Objective: To identify barriers and facilitators to help seeking for a dementia diagnosis from the perspective of carers and people with dementia.Design: A systematic review of the literature was conducted according to the PRISMA guidelines (PROSPERO protocol registration CRD42018092524). Nine electronic databases were searched for qualitative, quantitative, and mixed methods primary research studies. Two independent reviewers screened titles and abstracts, full texts of eligible studies, and conducted quality appraisal of included articles. A convergent qualitative synthesis approach was used. Results: From 7496 articles, 35 papers representing 32 studies from 1986 to 2017 were included. Studies originated from 13 countries across 4 continents. Barriers and facilitators were reported predominantly by carers. A small number of studies included people with dementia. Barriers included denial, stigma and fear, lack of knowledge, normalization of symptoms, preserving autonomy, lack of perceived need, unaware of changes, lack of informal network support, carer difficulties, and problems accessing help. Facilitators included recognition of symptoms as a problem, prior knowledge and contacts, and support from informal network. Conclusions: Studies from a 30-year period demonstrated that barriers to help seeking persist globally, despite increasing numbers of national dementia policies. Barriers and facilitators rarely existed independently demonstrating the complexity of help seeking for a diagnosis of dementia. Multiple barriers compounded the decision-making process and more than one facilitator was often required to overcome them. Multi-faceted interventions to reduce barriers are needed, one approach would be a focus on the development of dementia friendly communities to reduce stigma and empower people with dementia and carers. 

Background: Previous cognitive behavioral therapies for informal caregivers (ICs) have produced negligible effects. The purpose of this study was to evaluate, in a randomized controlled trial, the efficacy of Emotion Regulation Therapy adapted for caregivers (ERT-C) on psychological and inflammatory outcomes in psychologically distressed ICs and the cancer patients cared for. Methods: A total of 81 ICs with elevated psychological distress were randomly assigned to ERT-C or a waitlist condition and assessed pre-, mid-, and post-treatment. In 52 cases, the patient cared for by the IC was included. Patients did not receive ERT-C. Both the ERT-C and waitlist groups were followed 3 and 6 months post-treatment. Data were analyzed with multilevel models, and P values were two-sided. Results: Compared with ICs in the waitlist condition, ICs in the ERT-C condition experienced medium to large statistically significant reductions in psychological distress (Hedge's g = 0.86, 95% confidence interval [CI] = 0.40 to 1.32, P < .001), worry (g = 0.96, 95% CI = 0.50 to 1.42, P < .001), and caregiver burden (g = 0.53, 95% CI = 0.10 to 1.99, P = .007) post-treatment. No statistically significant effects were found for rumination (g = 0.24, 95% CI = -0.20 to 0.68, P = .220). Results concerning caregiver burden were maintained through 6 months follow-up. Although the effects on psychological distress and worry diminished, their end-point effects remained medium to large. No statistically significant effects on systemic inflammation were detected (C-reactive protein: g = .17, 95% CI = 0.27 to 0.61, P = .570; interleukin-6: g = .35, 95% CI = -0.09 to 0.79, P = .205; tumor necrosis factor-alpha: g = .11, 95% CI = 0.33 to 0.55, P = .686). Patients whose ICs attended ERT-C experienced a large increase in quality of life post-treatment (g = 0.88, 95% CI = 0.18 to 1.58, P = .017). Conclusions: To our knowledge, this is the first randomized controlled trial evaluating the efficacy of ERT-C for ICs. Given the previous disappointing effects of other cognitive behavioral therapies for this population, the present findings are very encouraging. Identifying ICs with elevated psychological distress and providing them with relevant psychotherapy appears an important element of comprehensive cancer care.

Extract: Caring for an older family member can be a challenging and stressful experience, and there is a need to better support family carers in their role.(1) Drawing on a rapidly growing body of research conducted with various population groups, (2) there is reason to suggest that psychological interventions that target self‐compassion could be particularly relevant in supporting family carers of older adults. Yet, research exploring self‐compassion within this population is currently very limited, (3) and the potential theoretical underpinnings of self‐compassion as an intervention and/or form of support for this group have not been explored. Within this paper we outline, for the first time, a conceptual rationale for why self‐compassion is an applicable intervention target for family carers of older adults. In doing so, we situate the discussion within current understanding and evidence about family caregiving stress and use an emotion regulation framework to explore the mechanism of change though which self‐compassion may positively influence carer health outcomes. This conceptual commentary is intended to encourage and guide research in a new and rapidly developing area and, to this end, we provide a series of considerations for future research to extend current understanding....

Informal caregivers of persons with dementia often report high levels of anxiety, depression and burden. Nonetheless, other less evaluated psychological symptoms might also influence their health-related quality of life (HRQoL). The aim of this study was to comprehensively analyse other psychological symptoms and their influence on the health-related quality of life of informal caregivers. Fifty-four informal women caregivers and fifty-six women non-caregivers were recruited to participate in the study. Psychological symptoms were assessed using the Symptom Check-List-90-Revised (SCL-90-R) questionnaire and the HRQoL with the EuroQoL-Five Dimensions and Three Levels (EurQoL-5D-3L) questionnaire. Significant between-group differences were found in the majority of scales in the SCL-90-R questionnaire (p < 0.01) and caregivers also reported a worse HRQoL than non-caregivers (p < 0.05). Several psychological symptoms such as obsession-compulsive (beta = 0.47), hostility (beta = 0.59), and somatization (beta = 0.49) had a significant impact on caregivers' HRQoL (R-2 explained between 0.17 and 0.30 of the variance). Caregivers are at a higher risk of suffering other psychological symptoms and show a moderate-high level of psychiatric morbidity, which therefore explains the poorer HRQoL outcomes. Supporting interventions should be provided to mitigate these psychological symptoms in order to improve their general distress and HRQoL.

Introduction Cognitive behavioural family intervention (CBFI) may be an effective brief psychosocial intervention for people diagnosed with severe mental illness (SMI) and their families. No systematic review has summarized the effectiveness of CBFI. Aim This review aimed to systematically examine the trial evidence of the effectiveness of CBFI versus treatment as usual (TAU) on improving the outcomes of people diagnosed with SMI and their families. Method Eligible randomized controlled trials were identified from nine databases. Three investigators independently took part in selection of articles, data extraction and risk assessment. Pooled treatment effects were computed using random-effects models. Results Four studies consisting of 524 participants were included. The risk of bias was low–unclear in most areas. The pooled CBFI effect on four service user outcomes including overall positive symptoms, delusions, overall negative symptoms and general psychopathology was significantly improved at post-treatment, compared with TAU, whereas effects on hallucinations and insight were equivocal. Discussion The findings reveal that CBFI is superior to TAU in treating positive and negative symptoms immediately following the intervention. Implications for Practice Mental health nurses may practise CBFI to enrich the psychiatric nursing service and promote nurse-led intervention. However, there is currently no substantial evidence that the intervention is effective over the longer term. 

Background: Given the importance of ethnic culture in family caregiving and recent Chinese immigrant population growth, this study explored effects of multiple filial piety traits-filial expectation, self-rated filial performance, and filial discrepancy-on psychological well-being of Chinese immigrants who care for older parents (adult-child caregivers) in the United States. Methods: This study used cross-sectional data from 393 Chinese immigrant adult-child caregivers in the Greater Chicago area from the 2012-2014 Piety study. Multivariate negative binomial and linear regression analyses tested effects of filial expectation, self-rated filial performance, overall filial discrepancy, and discrepancies in six filial domains (respect, bringing happiness, care, greeting, obedience, and financial support) on psychological well-being indicators: depressive symptoms and stress. Results: Adult-child caregivers reported high filial expectation and self-rated performance, and expectation was higher than performance. High filial expectation and self-rated performance were significantly associated with better psychological well-being; Overall filial discrepancy and two emotional-support domain discrepancies (respect, greeting) were associated with poor psychological well-being. Conclusions: Findings suggest that filial expectation, self-rated filial performance, and filial discrepancy are important in shaping Chinese adult-child caregivers' psychological well-being. Researchers and practitioners should incorporate these aspects of filial piety in future research and intervention development for this population.

Background: Informal caregivers of palliative patients show higher levels of depression and distress compared with the general population. Fegg’s (2013) existential behavioural therapy was shortened to two individual 1-h sessions (short-term existential behavioural therapy). Aim: Testing the effectiveness of sEBT on psychological symptoms of informal caregivers in comparison with active control. Design: Randomised controlled trial. Setting/participants: Informal caregivers of palliative in-patients. Methods: The primary outcome was depression; secondary outcomes were anxiety, subjective distress and minor mental disorders, positive and negative affect, satisfaction with life, quality of life and direct health care costs. General linear mixed models allow several measurements per participant and change over time. Reasons for declining the intervention were investigated by Rosenstock’s Health Belief Model. Results: Overall inclusion rate was 41.0%. Data of 157 caregivers were available (63.1% females; mean age: 54.6 years, standard deviation (SD): 14.1); 127 participants were included in the main analysis. Participation in sEBT or active control was not significantly associated with post-treatment depression. Outcomes showed prevailingly significant association with time of investigation. Self-efficacy, scepticism of benefit of the intervention, belief of better coping alone and support by family and friends were significant factors in declining participation in the randomised controlled trial. Conclusion: Inclusion rate was tripled compared with a previously evaluated longer EBT group intervention. By shortening the intervention, inclusion rate was traded for effectiveness and the intervention could not impact caregivers’ psychological state. Early integration of sEBT and combination of individual and group setting and further study of the optimal length for caregiver interventions are suggested.

Introduction Internalized stigma is prevalent among patients diagnosed with schizophrenia. Their family caregivers (FGs) also suffer from internalized stigma, but limited studies have addressed the issue. Aim The aim of this study was to determine the severity of internalized stigma and its correlates among FGs of patients diagnosed with schizophrenia in Changsha, Hunan, China. Methods A consecutive sample of 299 FGs was recruited at the psychiatric outpatient department of a tertiary hospital in Changsha. This study explored the relationships between internalized stigma and potential factors. Results Nearly 50% of the FGs perceived mild internalized stigma, 24% of the FGs reported moderate level, and 6% had a severe level. Internalized stigma was associated with patients’ characteristics (severity of illness) and FGs’ characteristics (hope, social support, passive coping, age, education background, residence with the patient, caring for a male or a young patient and difficulty in supervising medication). Discussion and implications for practice Informative and psychosocial interventions based on education and contact for FGs such as enhancing mental health literacy programs, cognitive therapies and group psychoeducation can provide FGs with a better understanding of schizophrenia and to promote hope, active coping and social support. 

Background Family education programs (FEPs) target caregiving-related psychological distress for carers of relatives/friends diagnosed with serious mental health conditions. While FEPs are efficacious in reducing distress, the mechanisms are not fully known. Peer group support and greater mental health knowledge are proposed to reduce carers' psychological distress by reducing stigmatising attitudes and self-blame, and strengthening carers' relationship with their relative. Methods Adult carers (n = 1016) who participated in Wellways Australia's FEP from 2009 to 2016 completed self-report questionnaires at the core program's start and end, during the consolidation period, and at a 6-month follow-up. Those who enrolled early completed questionnaires prior to a wait-list period. We used linear mixed-effects modelling to assess the program's effectiveness using a naturalistic wait-list control longitudinal design, and multivariate latent growth modelling to test a theory-based process change model. Results While there was no significant change over the wait-list period, psychological distress, self-blame and stigmatising attitudes significantly decreased, and communication and relationship quality/feelings increased from the core program's start to its end. Changes were maintained throughout the consolidation period and follow-up. Peer group support significantly predicted the declining trajectory of distress. Peer group support and greater knowledge significantly predicted declining levels of self-blame and stigmatising attitudes, and increasing levels of communication. Conclusions This is the first study to quantitatively validate the mechanisms underlying the effect of FEPs on carers' psychological distress. Peer group support is key in modifying carers' appraisals of their friend/relatives' condition. Continued implementation of FEPs within mental health service systems is warranted. 

OBJECTIVES: Hepatic encephalopathy (HE) is common in advanced cirrhosis and is characterized by marked neuropsychiatric abnormalities. However, despite its severity and effects on brain function, the impact of HE on psychological status of patients has not been adequately assessed. The aim of this study was to evaluate the effect of HE on psychological status of patients and their informal caregivers. METHODS: Fifteen patients with cirrhosis and episodic or persistent HE and their corresponding informal caregivers were included. Semistructured interviews were performed in patients and caregivers. Quality of life (QoL) was assessed by the short-form 36 in both patients and caregivers, and the Zarit burden score was measured in caregivers. The analysis of interviews was performed using qualitative methodology. RESULTS: HE causes a major psychological impact on patients with HE. The first episode of HE caused a very significant impact that was reported with deep feelings, mainly of fear, anger, misery, anxiety, and sorrow, which persisted with time. Symptoms causing more psychological impact on patients were impaired ability to walk and speak. All effects were associated with a marked impairment in QoL. The psychological impact was also marked in caregivers who had a major burden, as assessed by the Zarit score. Moreover, QoL, particularly the mental component score, was markedly impaired in caregivers in intensity similar to that of patients. DISCUSSION: HE has a profound psychological impact on patients and their informal caregivers, associated with a marked negative influence on QoL. The psychological effects of HE on patients and caregivers should be evaluated and treated.

Neurodegenerative diseases such as Parkinson's and dementia are highly prevalent worldwide. People who suffer from these disorders often receive in-home care and assistance from family members, who must dedicate a considerable amount of time to the care recipient. The study of family caregivers' psychosocial adjustment to the degenerative processes of both conditions is of interest due to the implications for the quality of life of both the care receiver and the caregiver, as well as other family members. This study compares the psychosocial adjustment of family members who care for people with dementia and Parkinson's disease and identifies the main sociodemographic variables that affect the processes of adjustment to both conditions. To this end, the Psychosocial Adjustment to Illness Scale (PAIS-SR) and a sociodemographic form were administered to 157 family caregivers in Navarre, Spain. The results show that adjustment to the disease in family caregivers of people with Parkinson's disease and dementia is, in general, satisfactory and related to variables such as place of residence, income, and employment status. The illness itself (Parkinson's or dementia), however, is found to be the most influential variable in the level of psychosocial adjustment.

Objective: to identify factors associated with the presence of suicidal ideation in caregivers of stroke survivors. Methods: cross-sectional survey conducted with 151 primary informal caregivers. The Depression Anxiety and Stress Scale-21 and a questionnaire were used to evaluate the presence of thoughts of suicidal ideation, whose data were analyzed by descriptive and inferential statistics. Results: most caregivers had normal levels of depression (76.8%), anxiety (76.2%) and stress (79.5%), and showed no thoughts of suicidal ideation (70.9%). The correlation between scales showed that thoughts of suicidal ideation rise proportionally to the increase of anxiety, depression and stress levels. Conclusion: it was observed that high levels of depression, anxiety and stress favored the increased frequency of suicidal thoughts among caregivers of stroke survivors.

Background: Informal caregivers of people suffering from depressive disorders go through a psychological recovery process. This process is dynamic, deep, catalyzed by hope and optimism and characterized by stages from which specific needs ensue. This study aimed to describe the stages of the psychological recovery process and the level of optimism among informal caregivers of psychiatric inpatients suffering from depressive disorders in order to provide adapted nursing support and psychoeducation and facilitate a patient's own recovery. Methods: A descriptive exploratory study was conducted using a convenience sample of 29 informal caregivers. Participants filled out a sociodemographic questionnaire, a specially adapted Stages of Recovery Instrument (STORI) and the Life Orientation Test-Revised (LOT-R). Results: A mean optimism score of 16.41 showed that informal caregivers are close to the level of the general European population. The sample included all the stages of the recovery process, with 34.5% of participants being in the growth stage. Informal caregivers' stages in the recovery process were negatively associated with the patient's length of illness (Rho = -.683, p = .000) and positively associated with the caregivers' level of optimism (Rho = .564, p = .001). Conclusion: During the inpatient treatment of a close relative suffering from a depressive disorder, informal caregivers go through an individual psychological recovery process involving several stages. In addition to caring for inpatients, nurses are encouraged to meet and support caregivers as soon as possible in their individual recovery process. Furthermore, the development of a suitably adapted clinical tool would facilitate the assessment of the informal caregiver's stage in the recovery process within care units. A multidisciplinary approach is needed in this domain.

Introduction: Since the incorporation of women into the world of work, together with the progressive ageing of the population and the increase of chronic diseases, there is an alteration in the role of the caregiver, due to the physical, work and family burden it bears, emotional conflicts and with other family members. Mutual aid can be an effective alternative to promoting the well-being of caregivers, as well as their families and dependents. Objective: To know the characteristics of self-help groups for family caregivers and their influence on caregivers, the dependent and family health. Methodology: Systematic review. The search strategy included the Pubmed, Scopus, Psycinfo, Eric, Cochrane plus and CSIC databases; selecting scientific articles in either Spanish, Catalan, English, Portuguese or French, for the last 10 years. Results: 12 articles related to the study topic were selected. All studies show that participation in these groups can improve the physical-psychological well-being, the health of caregivers and, at the same time, reinforce their sense of social support, although there is a lack of studies in our environment, with a size higher quality sample. Conclusions: Caregivers benefit from participating in self-help groups. Therefore, they should become a routine component of the family caregiver. 

Purpose: Patients with pancreatic cancer have extremely high unmet psychological and physical needs. Family carers of these patients have even higher levels of distress than patients. Our purpose was to assess the feasibility and acceptability of a counselling intervention in patients diagnosed with pancreatic cancer and their carers. Methods: We conducted a single-arm feasibility study of the PREPARES (Patients and RElatives affected by PAncreatic cancer: Referral, Education and Support) pilot intervention. Patient and carer participants received up to nine counselling sessions delivered by a trained nurse via telephone and/or telehealth technology. The intervention, informed by self-efficacy theory, involved components to assess and address care needs, and provide feedback to clinicians. Feasibility was measured using participation and retention rates. Participants completed semi-structured interviews at the end of the intervention about acceptability. These were analysed using thematic analysis. Results: Twelve people participated: five patients and seven carers (38% and 50% participation rates respectively). Most participants (eight) completed all nine counselling sessions; two chose to receive fewer sessions and two were discontinued requiring more intensive psychiatric support. The intervention was highly acceptable. Participants unanimously preferred the telephone over video-conferencing and to receive counselling separately from their carer/patient. The main perceived benefits were emotional support, the nurse-counsellors’ knowledge, care coordination and personalised care. Suggested improvements included a welcome pack about their nurse-counsellor and that sessions should continue beyond nine sessions if required. Conclusions: The PREPARES intervention was feasible and highly acceptable. This low-cost intervention provided much-needed support to people affected by this devastating disease.

Informal caregivers (ICs) are integral to care provided to patients facing life-threatening or incurable illnesses. This responsibility causes considerable burden, as approximately one half of ICs report clinically significant symptoms of depression and/or anxiety that persist when left untreated. Psychosocial interventions containing efficacious treatment principles (e.g., cognitive behavior therapy [CBT]) show disappointing results in reducing anxiety and depression in ICs. This may reflect failure of these interventions to specifically target crucial mechanisms underlying the central feature of distress caused by the patient's illness-notably, perseverative negative thinking (PNT). Emotion Regulation Therapy (ERT) is an efficacious CBT developed to explicitly target mechanisms underlying PNT and the emotional concomitants that arise in response to stressful situations. This open trial was conducted to evaluate the acceptability and initial efficacy of ERT adapted to the experience of cancer ICs (ERT-C). Thirty-one ICs provided informed consent and completed eight weekly individual sessions of ERT-C. Participants completed self-report measures of depression and anxiety symptoms, PNT, emotion regulation deficits, and caregiver burden before and after treatment. ERT-C was well tolerated as indicated by 22 treatment completers and feedback provided in exit interviews. ICs demonstrated reduced depression and anxiety symptoms, PNT, and emotion regulation deficits with moderate to large effect sizes (Hedge's g range: 0.36-0.92). Notably, caregiver burden was not reduced but ICs expressed more ability to confront caregiving-related challenges. Findings offer promising but preliminary support for ERT-C as a conceptual model and treatment modality for distressed cancer ICs. 

Background: Patients with heart valve disease need to receive long-term care from their family members after surgical valve replacement. Thus, family caregivers should have adequate self-efficacy for patient care. Objectives: This study examined the effects of the family-centered empowerment model (FCEM) on self-efficacy and self-esteem among the family caregivers of patients with prosthetic heart valve. Methods: In this quasi-experimental study, forty patients together with one of their family caregivers were consecutively recruited and allocated to an intervention or a control group. The FCEM was used in three to five sessions for patients in the intervention group. Besides, we sent their family caregivers educational cards containing the same educations provided to their patients. Finally, an educational session was held for family caregivers in which their questions were answered and each of them was provided with an educational booklet containing the same materials as the educational cards. Patients and their family members in the control group received routine care. Self-efficacy and self-esteem of family caregivers were assessed before, 1 week, and 1.5 months after the intervention. Data analysis was performed through the independent-samples t-test and the repeated measures analysis of variance. Results: Before the intervention, the mean scores of self-efficacy in the control and the intervention groups were 26.68 ± 4.79 and 26.79 ± 5.49, whereas the mean scores of self-esteem in these groups were 33.74 ± 4.55 and 33.84 ± 4.72, respectively. None of the between-group differences were significant. After the intervention, the mean scores of self-efficacy and self-esteem in the intervention group were significantly greater than the control group (37.32 ± 2.68 versus. 29.89 ± 2.20 and 36.26 ± 3.66 versus. 29.26 ± 5.84; P < 0.05). Conclusion: The use of the FCEM promotes self-efficacy and self-esteem among the family caregivers of patients with prosthetic heart valve. 

Background: Several studies show the effectiveness of face-to-face interventions with families in improving the prognosis of patients with severe psychiatric disorders and their relatives; however, the effectiveness of online interventions is poorly understood. The current study aims to provide an overview of evidence for the effectiveness of online treatments (web/app) for patients with severe psychiatric disorders and their families.; Method: We performed a systematic review of online treatments for informal family caregivers of patients with a severe psychiatric disorder. The study psychological interventions had to have been administered in an exclusively online format (app, internet) and aimed at families of patients with severe mental disorder (at least one of first episode psychosis, schizophrenia, schizoaffective, bipolar disorder, and psychotic disorder).; Results: Of a total of 1331 articles, we identified 9 viable studies; 4 randomized clinical trials, and 5 nonrandomized clinical studies. The present study is the first systematic review in this area. Online interventions were well accepted, with good adherence and satisfaction among the caregivers and patients and improved the symptoms of both caregivers and patients.; Limitations: Clinical and methodological diversity of the studies.; Conclusions: Burden improved, and perceived stress decreased in families. Moreover, the severity of positive symptoms decreased and fewer hospitalizations were recorded in patients than in the control group. Therefore, online interventions are a promising therapeutic approach for patients with severe mental disorder and their families. However, more studies-particularly randomized clinical trials-are needed in this area.

Introduction: Dementia is considered as a serious threat for over 65years old population, because of its high prevalence rates. Dementia with a complex and multifaceted nature has negative effects on patients, family members, and their caregivers' psychological health and socioeconomic status. The current qualitative study is designed to investigate the stigma phenomenon to dementia in Iranian population. Methods: This qualitative research was conducted by the descriptive phenomenological method. In order to analyze the data, the Colaizzi's descriptive phenomenological method was used. The target population consisted of all patients with dementia and their family members in neurological clinics of Tehran. We interviewed with patients and one of the main family members until data saturation. Participants included the main family members (spouse and children) of people with dementia (nine women and six men) who were selected by a nonrandom purposeful sampling method. Results: Two main themes emerged from data analysis: dysfunctional beliefs and negative social attitudes. Each main theme integrates the classes and clusters which are constituted by formulated meanings. Conclusion: Dimensions of stigma, such as dysfunctional beliefs and negative social attitudes, in addition to undesirable effects on patients and caregivers lives, is considered as a serious obstacle to effective caring and providing a good quality of life. It can be concluded that, higher levels of awareness, management, and coping with this powerful phenomenon are capable of preventing, rehabilitation, and improving the psychosocial health in elderly population.

Background: Providing care often causes negative reactions and psychological distress in family caregivers of patients with heart failure. How these 2 constructs are related has not been fully explored.; Objective: The aims of this study were to describe caregiver reactions to caregiving and psychological distress and to determine the associations between caregiver reactions to caregiving and psychological distress in family caregivers of patients with heart failure.; Methods: In this secondary analysis of a cross-sectional study, the sample included 231 patients and their family caregivers. The Chinese version of the Hospital Anxiety and Depression Scale was used to assess psychological distress (ie, symptoms of anxiety and depression), and the Caregiver Reaction Assessment was used to measure both negative and positive caregiver reactions to caregiving, including financial problems, impact on schedule, health problems, lack of family support, and self-esteem.; Results: Of the participants, 15.2% and 25.5% of caregivers reported symptoms of depression and anxiety, respectively. Impact on schedule was the most common caregiver reaction, followed by financial problems. Impact on schedule was related to both the caregivers' symptoms of depression (odds ratio [OR], 1.705; P = .001) and anxiety (OR, 1.306; P = .035), whereas financial problems were only related to symptoms of anxiety (OR, 1.273; P = .011).; Conclusions: The findings suggest that interventions for reducing the negative impact on schedule of caregiving and helping to solve the caregivers' financial concerns might help to relieve their symptoms of depression and anxiety.

Objective: We aimed to clarify the content of different types of regrets or lack of regret, and the frequency of feeling regret among family caregivers who assisted their relatives during their end of life stage. Method: Seventy primary informal caregivers in Israel were interviewed (17 spouses, 52 children, and 1 cousin) concerning their regret about the end of life of their deceased relative, including a general question about regret and questions about regret concerning life-sustaining treatments. After calculating the frequency of regrets and lack of regret, we conducted a qualitative analysis, using a thematic approach to identify themes and interpret data. Results: A majority of caregivers (63%) expressed regret and about 20% expressed ambivalence involving both regret and denial of regret. Regrets pertained to care given, suffering experienced, and the caregiver's behavior towards, and relationship with the deceased, including missing opportunities to express love and caring toward relatives. Caregivers viewed almost 30% of 75 administered life-sustaining procedures as misguided. Most regrets involved inaction, such as not communicating sufficiently, or not fighting for better care. Conclusion: This article provides a comprehensive description of EoL regrets, and helps clarify the complexity of regrets, lack of regrets, and ambivalence concerning regrets, though the study is limited to one country. Analysis suggests the need for public education concerning the EoL process, and for changes within the health care system to improve communication, to improve understanding of the needs of the terminally ill, and to provide more instruction to family caregivers to help them understand EoL.

Objective: The purpose of this study was to test two 2-month psychosocial interventions (Telephone Interpersonal Counseling [TIPC] and Supportive Health Education [SHE]) to improve quality of life (QOL) outcomes for Latinas with breast cancer and their informal caregivers. Methods: Two hundred and forty-one Latinas with breast cancer and their caregivers were assessed at baseline, immediately after the 2-month intervention, at 4 and 6 months after baseline. QOL outcomes were psychological distress, symptoms and social support. Results: Linear mixed effects models showed that for cancer survivors at 2 months, TIPC produced lower adjusted mean depression scores compared to SHE. At 4 months, SHE had reduced total number of symptoms, global symptom distress, and social isolation compared to TIPC. Only total number of symptoms was lower in SHE than in TIPC at 6 months. Among caregivers at 2 months, total number of symptoms, global symptom distress, and anxiety were lower, and self-efficacy for symptom management was higher in SHE compared to TIPC. Caregiver depression was lower in TIPC compared to SHE at 4 months. Conclusions: These telephone delivered interventions improved different outcomes. TIPC demonstrated superior benefits for depression management and SHE was more successful in anxiety and cancer-related symptom management. 

Persons living with dementia and their carers experience stigma. Stigma intensifies social exclusion and threatens health and well-being. Decreasing stigma associated with dementia is a public health priority across national and international settings and is a key component of National Dementia Strategies. Research-based drama is an effective public health strategy for reducing stigma and enhancing well-being. In this article we focus on survey data from an evaluation of a research-based drama called Cracked: new light on dementia. Our analysis illustrates the effectiveness of Cracked in reducing stigma by: decreasing health care practitioners' and family carers' prejudice, fostering critical reflection about relational practices, and fostering a commitment to individual and collective action to address stigma. Cracked is well-positioned to respond to urgent calls for culture change, which include reducing societal misconceptions and stereotypes around dementia and promoting inclusive and meaningful engagement of persons living with dementia across all levels of society.

Objective:This study aimed to review and synthesize findings of the effectiveness of psychosocial interventions aimed at improving outcomes for family carers of people with dementia. Method: A systematic review and meta-analysis were conducted according to Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA) guidelines. We systematically searched the following databases: Cochrane, PubMed, Cumulative Index to Nursing and Allied Health Literature (CINAHL), PsycInfo, Excerpta Medica Database (EMBASE), and Applied Social Sciences Index and Abstracts (ASSIA). RevMan 5 software was used to conduct meta-analysis and subgroup analysis using a random-effects model. Results: The search yielded 22 high-quality intervention articles that were suitable for further meta-analysis. Meta-analysis revealed that psychosocial interventions have a small to moderate significant effect on carer burden (standardized mean difference [SMD] = -0.34, confidence interval [CI] = [-0.59, -0.09]), depression (SMD = -0.36, CI = [-0.60, -0.13]), and general health (SMD = 0.34, CI = [0.18, 0.51]). Discussion: Psychosocial interventions had a positive impact on carer outcomes; however, these results should be interpreted with caution, given the significant level of heterogeneity in study designs. Future research could examine contextual and implementation mechanisms underlying psychosocial interventions to develop effective support systems for family carers of people with dementia.

Objective: To measure the psychological distress among the informal caregivers of disabled young adults with traumatic brain injuries (TBI) and to identify its associated factors.; Methods: An analytical cross sectional study was conducted with 76 informal caregivers of young adults (19 - 50 years) with TBI, using admission records of one of the tertiary care hospitals in Karachi, Pakistan from 2015 to 2016. Data were collected using a structured questionnaire comprising a general demographic questionnaire and the General Health Questionnaire- 28. The effect of the predictors on the psychological distress was determined by applying multiple linear regression analysis.; Results: The mean score of the psychological distress was found to be 23.5±14.28. The findings indicated that anxiety and insomnia, and social dysfunction were the most affected domains of psychological distress; whereas, depression was the least affected. Factors including the management of finances, number of children, patient's gender, and patient's level of disability and lack of socialization were positively associated with the level of distress. As reported by participants, religious beliefs served as a coping mechanism for most of them.; Conclusions: The study showed a high level of distress among informal caregivers of young adults with TBI. For recognizing the psychological effects of TBI in patients and their informal caregivers, it is important to initiate and ensure the provision of psychological support to the patients and their families.

Caring for an older family member with dementia can be extremely challenging, often resulting in diminished psychological well-being. A wide range of both internally and externally directed behavioral strategies may serve to protect well-being among caregivers. Specifically, primary control strategies involve direct attempts to change one's current situation, while secondary control strategies are attempts to inwardly adjust cognitions to align with the current situation. This study examined the use of multiple primary and secondary control strategies among familial caregivers (n = 110), as well as their associations with several indices of psychological well-being. Results showed that the most common primary and secondary control strategies, namely task persistence and positive reappraisal, were used with approximately equal frequency. Furthermore, the specific strategy of positive reappraisal seemed to bolster psychological well-being among caregivers. Findings indicate that primary control strategies might be less effective than secondary control strategies within the context of caregiving for a person with dementia.

While informal caregivers often feel burdened by the care for a person with dementia, they can also experience positive consequences due to caregiving; caregiver gains. One of these, relatively overlooked, caregiver gains is heightened self-esteem. We assessed the predictive ability of non-modifiable (caregiver sociodemographic- and dementia related-) and modifiable (psychological-) factors for caregiver self-esteem). A cross-sectional study in which 201 caregivers, who spent at least eight hours a week on caring for a community-residing person with dementia, completed a semi-structured interview and five questionnaires. One two-block (1: non-modifiable-; 2: modifiable variables) hierarchic multiple regression analysis was used to assess which variables predicted self-esteem. None of the non-modifiable variables significantly predicted self-esteem. Regarding the modifiable variables, depression and relationship quality with the person with dementia significantly predicted self-esteem (adjusted R2 = .460, β = -.207, p = .015 and β = .632, p < .001 respectively). Caregivers who experience a better relationship quality with the person with dementia, and fewer depression symptoms, experience a higher level of self-esteem. Interventions focused on heightening self-esteem should strive to optimize these factors to enhance the lives of informal dementia caregivers.

Aim: Chinese family members always take care of older adults because of obligations stemming from the culture of filial piety and the paucity of a long-term care system. These caregivers usually perceive high levels of stress that could compromise their psychological health and consequently result in anxiety impairments. This study aimed to assess the anxiety symptoms of Chinese family caregivers of older adults, explore factors associated with these symptoms, and provide theoretical evidence on improving their mental health.; Methods: A questionnaire survey was conducted face-to-face with caregivers of community-dwelling older adults. The survey asked about the demographic characteristics of the caregivers and older adults, objective caregiving loads, and social support and included the Zung Self-Rating Anxiety Scale and the Perceived Stress Scale.; Results: Anxiety symptoms were present in 43.1% of caregivers. The R2 changes indicated that the incremental variance explained by each block of variables was 9.8%, 5.0%, 0.7%, 17.6%, and 2.1% for demographic characteristics of caregivers, demographic characteristics of older adults, objective caregiving loads, perceived stress, and social support, respectively. Perceived stress was the strongest predictor of anxiety symptoms, and social support was positively associated with anxiety symptoms. Factors associated with caregivers' anxiety symptoms were having a chronic disease and living with older adults, as well as older adults' weight, hours of sleep, and education level.; Conclusion: Chinese family caregivers of older adults experienced higher levels of anxiety symptoms. Perceived stress could aggravate these symptoms, but social support might assist in alleviating anxiety symptoms from the stress of caregiving.

Objective: The aim of the present work was to study the serial multiple mediating role of optimism, perceived social support and subjective burden in the relationship between objective burden and psychological distress in caregivers of people with Alzheimer´s Disease (AD). Method: One hundred and forty family caregivers of people living with AD were recruited from randomly selected Alzheimer Association Centres. They answered the General Health Questionnaire (GHQ), the Life Orientation Test-Revised (LOT-R), the Functional Social Support Questionnaire (DUKE.UNC), the Zarit Burden Interview (ZBI) and questions relating to gender, age and the amount of time spent on daily caregiving. Results: Results indicated that objective burden and subjective burden were both high in these caregivers. Optimism mediated on psychological distress through social support and through subjective burden with a full mediation role. When comparisons between indirect effects were performed, optimism was the mediator with the greatest effect between objective burden and psychological distress. Conclusion: This study highlights the indirect role of optimism and the advantages that interventions in optimism training in the early stages of the person with AD could produce. Thus, alleviating subjective burden and increasing perceived social support, which would lead to an improvement in the mental health of family caregivers of people with AD.

Caregiving burden significantly effects the physical and mental health of family dementia caregivers. While the association between objective caregiving burden (OCB) and subjective caregiving burden (SCB) of family dementia caregivers is well documented, little is known as with how the association is moderated by the configuration of intrapersonal resource (e.g., immanent justice reasoning) and interpersonal resource (e.g., social support). The present study collected cross-sectional data on 157 major family caregivers of non-institutionalized persons with dementia in an urbanizing region of Western China's Sichuan Province. They responded to questions on daily time spent on caregiving, the short version of Zarit Burden Interview (ZBI), a sub-scale of a caregiver meaning scale, Social Support Rating Scale (SSRS), and demographic questions. Controlling for the demographic variables of the caregivers, this study found that the objective and subjective dementia caregiving burden were significantly associated (p < 0.001), and immanent justice reasoning was positively correlated with subjective burden (p < 0.01). Moreover, the association between OCB and SCB was significantly positive when social support and immanent justice reasoning were both high (p < 0.001), but neutral when social support was high and immanent justice reasoning was low. The association between OCB and SCB was significantly positive when social support and immanent justice reasoning were both low (p < 0.05), but neutral when social support was low and immanent justice reasoning was high. This research suggests the importance of developing intervention programs that consider the configuration of the external supporting resources and internal meaning-making of caregiving of the family dementia caregivers.

Background: Genetic and environmental interactions predispose certain groups to lung cancer, including families. Families or caregiving units experience the disease interdependently. We have previously evaluated the concerns and preferences of patients in addressing the lung cancer experience and cancer risks in their families. This qualitative study evaluates the concerns and preferences of family members and caregivers of patients with lung cancer in the lung cancer experience and familial cancer risks.; Methods: We held focus groups to discuss the format and timing of addressing these preferences and concerns. Qualitative data generated was analyzed using a grounded theory approach.; Results: Five focus groups totaling 19 participants were conducted. Seven themes were identified: (1) journey to lung cancer diagnosis has core dimensions for patient and family, (2) importance of communication between patients, families, and providers, (3) challenges for caregivers and family, (4) mixed perceptions of lung cancer causation among relatives, (5) discussion of cancer risk with relatives has complex dynamics, (6) impact of diagnosis on family health behaviors and screening, (7) role of genetic counseling.; Conclusions: Family members of patients with lung cancer are interested in discussing risk factors, prevention, and diagnoses and also would like access to other supportive services do learn about and cope with some of the stresses and barriers they experience in the family lung cancer journey. The diagnosis represents a potential teachable moment with the opportunity to reduce the risk of LC development or improve early detection in LC patient's family members.

This study explores experiences of mothers in Sweden who care for their adult children suffering from severe mental illness. Using 15 interviews with mothers from 40 to 80 years old, the article examines how predominant professional knowledge and sanism constructs the mothers and their children as deviant and what counterstrategies the mothers develop as a response to these experiences of discrimination. The findings show that the mothers’ experiences are characterized by endless confrontations with negative attitudes and comments that have forced them to go through painful and prolonged processes of self-accusations for not having given enough love, care, support and help in different stages of their children's life. But the mothers’ experiences also reveal important aspects of changes over the life span. As the mothers are ageing, the relationship between them and their children becomes more reciprocal and the ill child may even take the role as family carer.

Objective: This randomized controlled trial was conducted to determine whether a 12-week home-based aerobic and resistance exercise program would improve physical function and caregiving perceptions among family caregivers (FCGs) of persons with heart failure. Method: Overall, 127 FCGs were randomized to one of three groups: usual care attention control (UCAC), psychoeducation only (PE), and psychoeducation plus exercise (PE + EX). Physical function measures (6-min walk test, handgrip, and upper and lower strength) and caregiving perceptions (Bakas Caregiving Outcomes Scale) were obtained at baseline and at 6 months. Results: FCGs in the PE + EX showed significant improvement in 6-min walk distance (p = .012), handgrip, and lower extremity strength compared with the PE and UCAC groups. The combined group had the greatest improvement in caregiver perceptions (p < .001). Conclusion: FCGs in the PE + EX group improved the most in physical function and caregiver perception outcomes. Directions for future research are provided.

Objectives The burden often associated with informal caregiving for patients with dementia is associated with negative effects on health, both physiologically and in terms of caregiver cognition. There is wide variation in the level of burden experienced by dementia caregivers. To better understand caregiver burden, it is thus important to understand the factors associated with level of burden. Methods In the current study, we collected carer burden and putative associated factors at baseline, 6 and 12 months. Hierarchical regression was used to assess the impact of these factors on caregiver burden. We assessed self-reported carer burden, patient behavioural and safety issues, and level of difficulty associated with providing assistance with activities of daily living (ADL). Patients' age was also recorded, and trained nurses assessed patient cognitive performance using the quick mild cognitive impairment screen. Results At baseline, patients' age, cognition and ADLs were associated with burden, and safety and challenging behaviour were both significantly associated with burden independent of the other factors. Change in burden was associated with change in carer-reported safety at 6-month follow-up, and with change in safety and change in carer-reported challenging behaviours at 12-month follow-up. Conclusions Safety issues and challenging behaviours are associated with carer burden, even after accounting for cognitive and functional impairment in the person with dementia. As dementia progresses, monitoring these factors may help to inform stress-management strategies for caregivers.

Introduction: Living with a person with dementia (PWD) causes physical and psychological problems in family caregivers (FCGs), as well as a reduction in their Quality of Life (QOL). The purpose of this study was to examine the possible effectiveness of the therapeutic songwriting method for improving the QOL and well-being of FCGs of PWD. Methods: The sample of caregivers (n = 21) was divided into three homogeneous groups that received 12 intervention sessions. A non-randomized, quasi-experimental design with repeated measures (pre-post intervention) was employed to determine a possible therapeutic effect. The State-Trait Anxiety Inventory (STAI), Short-Form Health Survey (SF-36v2), Beck Depression Inventory, and Rosenberg Self- Esteem Scale were administered before and after the intervention. Results: The results showed a decrease in anxiety and depression scores and an increase in scores of self-esteem after the intervention. Regarding QOL, post-intervention scores in the Mental Component Summary and Mental Health were significantly higher. In contrast, a small effect size was observed for difference between pre-test and post-test on the subscales of QOL: General Health, Social functioning, Role Emotional and Bodily Pain. Discussion: This exploratory study concludes that therapeutic songwriting can help to reduce caregivers' symptoms of depression and anxiety and improve their perceived self-esteem and QOL. This work reinforces the progress made to date and provides new results that highlight the benefits of music therapy for FCGs of PWD.

Background/objective: Anxiety is common in patients experiencing neurocritical illness and their family caregivers. Resilience factors like mindfulness and coping skills may be protective against symptoms of emotional distress, including anxiety. Less is known about the interplay of anxiety symptoms and resilience factors between patients and caregivers. The purpose of this study is to examine the trajectory of anxiety symptoms among dyads of neurocritical care patients without major cognitive impairment and their family caregivers and to elucidate the relationship between resiliency (e.g., mindfulness and coping) and anxiety in these dyads.; Methods: Prospective, longitudinal study of adults admitted to the neurological intensive care unit (Neuro-ICU) and their caregivers. Dyads of patients (N = 102) and family caregivers (N = 103) completed self-report measures of mindfulness (Cognitive Affective Mindfulness Scale-Revised) and coping (Measure of Current Status-Part A) during Neuro-ICU hospitalization and anxiety symptoms (anxiety subscale of the Hospital Anxiety and Depression Scale) during hospitalization and at 3- and 6-month follow-up. We used actor-partner interdependence modeling to predict the effect of one's own baseline characteristics on one's own and one's partner's future anxiety symptoms.; Results: Rates of clinically significant anxiety symptoms were 40% for patients and 42% for caregivers at baseline. Of these, 20% of patients and 23% of caregivers showed moderate and severe symptoms. Approximately, one-third of patients and caregivers reported clinically significant anxiety symptoms at 3- and 6-month follow-ups, with more than 20% endorsing moderate or severe symptoms. Patients' own baseline mindfulness, coping, and anxiety symptoms were associated with lower anxiety symptoms at all time points (ps < 0.001)-this was also true for caregivers. For both patients and caregivers, one's own baseline mindfulness predicted their partner's anxiety symptoms 3 months later (p = 0.008), but not at 6-month follow-up.; Conclusions: Anxiety symptoms in Neuro-ICU patient-caregiver dyads are high through 6 months following admission. Mindfulness is interdependent and protective against anxiety in dyads at 3-month but not 6-month follow-up. Early, dyad-based interventions may prevent the development of chronic anxiety in patients without major cognitive impairment and caregivers.

Introduction: Oral cancer is now a major public health problem in India. It does not only affect the patient, but also has a deep psychosocial impact on the family caregivers who are deeply involved with the cancer patient for nursing, timely medication, and consulting the doctor. Studies have found that the caregivers often suffer from depression, anxiety, and fear of losing their near and dear ones. This study aims to capture the psychosocial impact of oral cancer on the family caregivers.; Materials and Methods: This was a cross-sectional study carried out in a tertiary care hospital with the primary caregivers of those oral cancer patients who completed their treatment and came for follow-up after 2-3 months of treatment completion. The study participants were recruited till a sample size of 100 was reached. This was adequate to report proportions with an error of 10%. We have used "The Caregiver Quality of Life Index - Cancer" scale to capture the psychosocial impact of oral cancer on primary caregiver of the patient. The study was initiated after obtaining approval from the Institutional Ethics Committee. Informed written consents were obtained from all the study participants before beginning the interviews.; Results: Caregivers played an important role in the recovery of the patients. However, the strain of caregiving resulted in increased emotional stress among them. We found 56% of the family caregivers were female and 41% were male. Majority of the caregivers who accompanied the patients to hospital were the spouses. For the caregivers, the mean score for burden of the disease was found to be 60.0 (±20.2), that for disruption was 50.4 (±21.7), and for positive adaptation was 61.4 (±20.7).; Conclusion: Caregivers, who are usually invisible to the health-care team, should be recognized and their mental and physical well-being should also be given attention.

Background: Cancer care is physically and psychologically challenging both for care recipients and caregivers. Caregiving in cancer is an area that needs urgent attention in India. Much of caregiving literature in India is limited to mental illnesses. This study thus examines the perceptions and practices of psychological caregiving among caregivers and care recipients of breast cancer in India.; Methods: Participants were interviewed with the aid of a semi-structured qualitative interview guide. Participants included 39 caregivers and 35 care recipients in different breast cancer stages. Interviews were transcribed, translated to English, coded and themes were derived for further analysis. Informed consent from participants, and ethical clearance and permission from a tertiary hospital was obtained prior to data collection.; Results: Psychological caregiving as perceived by the participants included actions such as encouraging, convincing care recipients, companionship, and maintaining a stress free environment. Caregivers in particular felt that psychological caregiving meant, reacting calmly to sensitive queries of non-family members, providing emotional support to other family members and involvement in religious activities. Taking on such diverse responsibilities gave rise to several unmet psychological needs such as motivation and support in decision-making from other family members.; Conclusion: Irrespective of the status (caregiver or care recipient), participants in this study felt the need for structured counselling services to be incorporated into the standard care protocol. This is an area that needs to be further explored in the context of the breast cancer caregiver and care recipient dyad. 

Objective: To investigate the relationship of 2 health-related quality-of-life (QOL) item banks (Emotional Suppression and Caregiver Vigilance), developed for caregivers of service members/veterans with traumatic brain injury (TBI), to caregivers' positive and negative affect.; Setting: Community.; Participants: One hundred sixty-five caregivers of service members/veterans with TBI.; Design: Retrospective database analysis.; Main Measures: TBI-CareQOL Emotional Suppression; TBI-CareQOL Caregiver Vigilance; measures of negative (Patient-Reported Outcomes Measurement Information System [PROMIS] Depression, PROMIS Anger, TBI-CareQOL Caregiver-Specific Anxiety, National Institutes of Health Toolbox [NIHTB] Perceived Stress, GAD-7) and positive affect (Neuro-QOL Positive Affect and Well-being, NIHTB Self-efficacy, NIHTB General Life Satisfaction, Family Resilience Scale for Veterans, TBI-QOL Resilience).; Results: When considered separately, linear regression showed that higher levels of Emotional Suppression and greater Caregiver Vigilance were individually associated with more negative affect and less positive affect. When considered together, the pattern of findings was generally consistent for both Emotional Suppression and Caregiver Vigilance with regard to negative affect and for Emotional Suppression with regard to positive affect. However, when considered together, Caregiver Vigilance was no longer related to positive affect.; Conclusions: Caregivers with high emotional suppression and/or vigilance are more likely to show emotional distress and less likely to have positive affect than caregivers with lower levels of emotional suppression and vigilance. A combination of education and individual counseling targeting coping with negative emotions and TBI-related problems may be beneficial.

The role of caregivers is very important in the management of person with dementia, where it is not uncommon for them to experience psychological distress. However, the level of distress can be managed and reduced through strategic educational intervention. A systematic review has been conducted through searching Medline, Science direct, Cochrane library and EMBASE databases to provide a narrative synthesis that elaborate on methods and outcomes of the educational intervention among informal caregiver of person with dementia. From a total of 5125 records, eight studies were selected and included in this review, where the results show that educational intervention can be implemented either as individual or group intervention. Group intervention methods mainly focus on training programs such as workshops and lectures, and also group-based discussions. While for individual intervention, most of the activities were implemented through self-learning using technology or computer-based systems. In conclusion, based on the outcome of the studies, both methods of implementations are found to be useful in reducing psychological distress of the informal caregiver. 

This study was designed to promote enhanced self-efficacy and decreased stress levels for family caregivers at a hospice care hospital, thus increasing their quality of life. This is achieved through group flower arranging sessions. The objectives are to (a) enhance self-efficacy scores for family caregivers of Calvary patients, (b) decrease stress levels for family caregivers of Calvary patients, and (c) disseminate results to other hospices. The results show that the flower arranging sessions resulted in significantly increased self-efficacy and decreased stress and associated problems for the caregiver participants. Implications and suggestions for future research are discussed. 

Purpose: The study adopted a randomized controlled trial to compare the effect of culturally compatible psychosocial interventions on multiple aspects of quality of life (QoL) for family caregivers of lung cancer patients. Methods: 157 Chinese informal caregivers of lung cancer patients were recruited together with the family members for whom they were providing care, and randomly assigned to either integrative body-mind-spirit intervention (I-BMS) or cognitive behavioral therapy (CBT). Patient-caregiver dyads attended the same arm of intervention in separate groups for 8 weeks. Assessments of generic QoL, anxiety, depression, perceived stress, insomnia, and caregiving burden were measured before intervention (T0), within 1-week (T1), 8-week (T2), and 16-week (T3) post-intervention. Results: Adopting the intention-to-treat analysis, family caregivers in receipt of both I-BMS and CBT exhibited a statistically significant improvement in generic QoL immediately following intervention and at follow-up assessments, with moderate effect size. Improvement of insomnia was found at T1 for both modes, which deteriorated at follow-up; both modes reduced anxiety and perceived stress at follow-up. No intervention effect was observed in depression and domains of caregiving burden. There was no significant interaction effect between intervention type and time. No main or interaction effect between sample background variables and intervention type was found to predict symptomatic changes at T1 and T3. Conclusions: Culturally attuned I-BMS and CBT exhibited equivalent effectiveness in improving psychological distress and generic QoL for family caregivers of lung cancer patients. To improve the evaluation of outcomes, future study could benefit from incorporating a usual care control.

Informal caregivers play a crucial role in supporting persons with multiple sclerosis (MS), a neurodegenerative disease resulting in progressive worsening of physical and cognitive functioning. While research extensively showed that caregiving workload can be perceived as burdensome, little attention was devoted to the relation connecting workload and caregivers' well‐being. Building on previous literature on stress and coping, the aim of this study was to test the mediational role of coping between caregivers' tasks and well‐being. A group of 680 caregivers of persons with MS (M age = 46.45; 51.2% women) was recruited in eight Italian MS centres between June 2015 and December 2016. Caregiving tasks related to basic activities of daily living (ADL), instrumental ADL, psycho‐emotional and social‐practical care were assessed through the Caregiving Tasks in MS Scale; coping strategies (avoidance, criticism and coercion, practical assistance, supportive engagement, positive reframing) were investigated through the Coping with MS Caregiving Inventory; well‐being was evaluated through the Psychological Well‐Being Scales. Analyses substantiated a multi‐mediation model including tasks in basic ADL, psycho‐emotional and social‐practical care, and the coping strategies avoidance, criticism/coercion, supportive engagement, positive reframing. Basic ADL care was negatively related to psychological well‐being through lower use of supportive engagement and positive reframing. By contrast, psycho‐emotional and social‐practical tasks were both negatively and positively related to psychological well‐being, through higher use of avoidance and criticism/coercion as well as supportive engagement and positive reframing. Findings suggest that caregiving tasks are not solely detrimental to well‐being, but they may also provide a positive contribution through the adaptive coping strategies supportive engagement and positive reframing. Findings also highlighted task‐specific areas that could be targeted in intervention in order to effectively lighten burden and promote well‐being among caregivers. 

Objectives: Forecasting survival in cancer is a particularly challenging facet of oncological work and can involve complex interactions with patients and their families. While there is considerable research on patient experiences of being provided with, or becoming aware of, their prognosis, there has been much less emphasis placed on the experiences of caregivers. The aim of this paper was to examine caregivers' experiences of prognosis.; Design: This study used semistructured interviews; transcripts were analysed thematically using the framework approach. These data are part of a larger research project focused on experiences of cancer survivorship.; Setting: Recruitment was from two metropolitan hospitals in Queensland, Australia.; Participants: 50 caregivers of patients living with cancer and receiving treatment at two metropolitan hospitals (32% male, 68% female) participated in this study.; Results: Four main themes were identified: (1) caregivers' uncertainty around the meaning and implications of prognosis, (2) caregivers' sense of exclusion in prognostic conversations, (3) the practice of situating prognosis within a context of hope and (4) the precarious balance between realism, optimism and strategic 'ignorance'.; Conclusions: Caregivers are in many respects the unseen third party of prognostic communication. Developing a better understanding of caregivers' perceptions of prognosis, including how this may be challenged, accepted or otherwise, is important in engaging caregivers in the process of communicating prognostic information. Facilitating greater participation by caregivers in prognostic conversations could potentially address evident complexities and even improve the experiences of all stakeholders in cancer care settings.

Purpose: To explore the psychological experiences of the family caregivers of inpatients with gastric cancer or colorectal cancer, and to identify the relationships among insecure attachment, social support, and psychological experiences. Methods: The study design is a cross-sectional quantitative study collecting data through the use of four questionnaires, including the Hospital Anxiety & Depression Scale, the Self-esteem subscale of the Caregiver Reaction Assessment Scale, the Experience in Close Relationship Scale and the Social Support Rating Scale. Hierarchical regression analysis and path analysis were used to analyze the collected data. Results: Data from 207 participants was used. Family caregivers had experienced both depression and high self-esteem. Social support has significant direct effects on both depression and self-esteem. Attachment anxiety had direct effects on depression and social support, attachment avoidance had direct effects on self-esteem and social support. Social support has mediated the relationship between adult attachment and psychological experiences. Conclusions: Caregivers had experienced both negative and positive psychological outcomes. There were differences in the effects of insecure attachment on psychological experiences. Social support plays an important role in the relationships among insecure attachment, depression, and self-esteem. Insecure attachment styles and social support should be considered in tailored interventions for family caregivers to reduce their depression and enhance their self-esteem. 

Background: Family caregivers of patients in the intensive care unit (ICU) experience impairments in the quality of life. Previous studies report that psychological quality of life improves over time, but there has been limited longitudinal research, and measurement points have differed. Factors such as age, gender, and posttraumatic stress symptoms have been found to be associated with the quality of life, but level of hope and its associations with the quality of life have not been investigated.; Objectives: The objective of this study was (1) to evaluate changes in the quality of life in family caregivers during the first year after a patient's admission to the ICU and (2) to identify associations between patients' and family caregivers' background characteristics, posttraumatic stress symptoms, hope, and quality of life.; Methods: A longitudinal study design with five measurement points was used. Family caregivers completed study questionnaires at enrolment into the study and at 1, 3, 6, and 12 months after the patient's admission to the ICU. The quality of life was measured with the 12-Item Short Form Health Survey.; Results: Family caregivers (N = 211) reported improved psychological quality of life during the first year after the patient's admission to the ICU, but it was still lower than the psychological quality of life reported in norm-based data. Being on sick leave, consulting healthcare professionals (e.g., general practitioner), and increased level of posttraumatic stress symptoms were significantly associated with psychological quality of life, whereas hope was not. Reported physical quality of life was comparable to norm-based data.; Conclusion: Family caregivers of patients in the ICU reported impairments in quality of life during the first year after the patient's admission to the ICU. Being on sick leave, consulting healthcare professionals, and reduced posttraumatic stress symptoms may improve mental quality of life.

Objective: Caregivers of patients with lung cancer often face physical, emotional, and financial distress, which not only negatively affects the caregivers' mental health and quality of life but may also impact patients' well-being. The purpose of this systematic review is to examine the content, delivery, and efficacy of psychosocial interventions targeting caregivers of lung cancer patients.; Methods: Studies included in this systematic review assessed psychosocial interventions for caregivers of lung cancer patients that were published in English between January 2009 and December 2017. These interventions focused on burden, mental health, quality of life, self-efficacy, and/or coping as outcome measures. CINAHL, PubMed, PsycInfo, Science Direct, and Web of Science databases were searched using the terms (lung cancer OR lung neoplasms OR thoracic cancer) AND (caregiver OR caregiving) AND (intervention OR program) to systematically review the relevant literature on this topic.; Results: From the 22 studies included in this systematic review, interventions were classified into four categories: communication-based interventions, coping skills training interventions, multicomponent interventions, and stress reduction interventions. The majority of the interventions (especially communication-based and multicomponent) led to improvement, albeit not always statistically significant, in one or more outcomes; however, the most frequently reported improvements included, burden, distress, anxiety, depression, overall quality of life, self-efficacy, and coping abilities.; Conclusions: The unmet needs of informal caregivers of lung cancer patients have a significant impact on their mental health and quality of life, but this burden can be alleviated by psychosocial interventions that offer appropriate support, education, and resources.

Background: This study prospectively evaluated distress, depressive and anxiety symptoms as well as associated factors in family caregivers (FC) of advanced cancer patients at initiation of specialist inpatient palliative care.; Methods: Within 72 h after the patient's first admission, FCs were asked to complete German versions of the Distress Thermometer, Generalized Anxiety Disorder 7-item scale (GAD-7), Patient Health Questionnaire depression module 9-item scale (PHQ-9) for outcome measure. Multivariate logistic regression analyses were used to identify associated factors.; Results: In 232 FCs (62% spouses/partners), mean level of distress was 7.9 (SD 1.8; range, 2-10) with 95% presenting clinically relevant distress levels. Most frequent problems were sadness (91%), sorrows (90%), anxiety (78%), exhaustion (77%) and sleep disturbances (73%). Prevalence rates of moderate to severe anxiety and depressive symptoms were 47 and 39%, respectively. Only 25% of FCs had used at least one source of support previously. In multivariate regression analysis, being female (OR 2.525), spouse/partner (OR 2.714), exhaustion (OR 10.267), and worse palliative care outcome ratings (OR 1.084) increased the likelihood for moderate to severe anxiety symptom levels. Being female (OR 3.302), low socio-economic status (OR 6.772), prior patient care other than home-based care (OR 0.399), exhaustion (OR 3.068), sleep disturbances (OR 4.183), and worse palliative care outcome ratings (OR 1.100) were associated with moderate to severe depressive symptom levels.; Conclusions: FCs of patients presenting with indication for specialist palliative care suffer from high distress and relevant depressive and anxiety symptoms, indicating the high need of psychological support not only for patients, but also their FCs. Several socio-demographic and care-related risk-factors influence mental burden of FCs and should be in professional caregivers' focus in daily clinical practice.

Objective: To investigate prevalence and predictors of postloss distress, depressive and anxiety symptoms, and quality of life among bereaved family caregivers of patients with advanced cancer.; Methods: Prospective multicenter study. Family caregivers (N = 160, mean age 56.8 years, 66% female) completed validated outcome measures (Distress Thermometer, Generalized Anxiety Disorder 7-item scale, Patient Health Questionnaire depression module 9-item scale, SF-8 Health Survey Questionnaire) 6 months after patient's discharge or death at specialist inpatient palliative care ward.; Results: Clinically relevant distress was observed in 82% with sadness (89%), exhaustion (74%), sleeping problems (68%), loneliness (53%), and sorrows (52%) being the most common distress-causing problems. Moderate/severe anxiety and depressive symptoms were observed in 27% and 35%, respectively. Compared to an adjusted norm sample, quality of life was significantly impaired with exception of "bodily pain" and physical component score. Preloss caregiving (odds ratio [OR] 2.195) and higher preloss distress (OR 1.345) predicted high postloss distress. Utilization of psychosocial support services (OR 2.936) and higher preloss anxiety symptoms (OR 1.292) predicted moderate/severe anxiety symptoms, lower preloss physical quality of life (OR 0.952), and higher preloss depressive symptoms (OR 1.115) predicted moderate/severe depressive symptoms.; Conclusion: Preloss mental burden showed to be a consistent predictor for postloss burden and should be addressed during palliative care. Future research should examine specific caregiver-directed interventions during specialist palliative care.

Purpose: Caring for cancer patients can be highly stressful for both family caregivers and oncology professionals. These high levels of stress can lead to poorer patient outcomes and increased risk of health problems for the caregivers themselves. Art therapy may help these caregivers as art-making can be a relaxing and enjoyable form of self-expression and art therapists can support individuals in expressing and processing challenging emotions. Research on art-making or art therapy with caregivers of cancer patients has shown some positive results, but its interpretation is limited by the use of multifaceted interventions.; Method: In this mixed-methods study we compared two brief arts-based approaches for both professional and informal caregivers: single sessions of coloring or open-studio art therapy, with a 45-minute session each. Assessments included self-reports of affect, stress, self-efficacy, anxiety, burnout arnd creative agency alongside salivary biomarkers before and after the session. Open-ended questions, field notes and observations formed the qualitative part of the study.; Results: Thirty-four professional (n=25) and informal (n=9) caregivers participated. Participants in both conditions showed increases in positive affect, creative agency, and self-efficacy and decreases in negative affect, anxiety, perceived stress, and burnout. Participants in both conditions expressed enjoyment, relaxation, appreciation of time away from stressors, creative problem solving, a sense of flow, and personal and existential insight. The two approaches also elicited distinct experiences with participants reporting that they found improved focus in coloring and appreciated the support and freedom of expression in open studio art therapy.; Conclusions: These findings suggest that even brief art-making interventions can be beneficial for stressed caregivers of cancer patients. As experience with art-making increased the impact, repeated sessions may be even more useful. We recommend that oncology units have dedicated studio spaces with therapeutic support and different forms of art-making available to meet individual caregiver needs.

Background: About three-quarters of people with dementia live in their own homes, with help from family members and/or other unpaid carers, such as friends or neighbors. Often, unpaid carers themselves experience negative consequences, such as stress, burden, and symptoms of depression or anxiety. Research has shown that these consequences can be alleviated by psychosocial and psychological interventions. Moreover, there are indications that those interventions can be effective when offered online.; Objective: This paper describes the protocol of a randomized controlled trial (RCT) that will take place in the Netherlands to evaluate the effectiveness of iSupport, a minimally guided, internet-based intervention to improve carers' mental health and coping resources.; Methods: A superiority two-arm RCT comparing the effects of the online support program with a waiting list control condition will be carried out in the Netherlands. The iSupport intervention was developed by the World Health Organization and is based on cognitive behavioral therapy principles. It has five main themes divided into 23 lessons. Carers can pick and choose which lessons they want to complete. We aim to recruit 200 unpaid carers. The experimental group (n=100) will be provided with access to the intervention for 3 months following randomization; those in the waiting list control group (n=100) will be granted access to the intervention after 3 months. Assessments will be conducted at baseline (T0), 3 months after baseline (post intervention, T1), and 6 months after baseline (follow-up, T2). The primary outcome is perceived stress, measured by the Perceived Stress Scale. Secondary outcomes are symptoms of depression and anxiety, caregiver burden, sense of competence, self-efficacy, mastery, and carers' attitudes toward dementia and their person-centered approach (ie, to what extent carers tailor the provided care to the interest, needs, and history of the person with dementia).; Results: Recruitment for the trial started in January 2019. As of July 2019, we have enrolled 120 participants. Data collection is expected to be completed by March 2020. Once all the data have been collected, we will conduct the data analyses between April and May 2020. We aim to publish our results in a manuscript by June 2020.; Conclusions: Online interventions have shown promising results in improving the mental health of carers of people with dementia. Additionally, online interventions may overcome accessibility barriers. If successful, this intervention will have important potential for implementation as a public health intervention, since costs and support by trained staff are minimal.; Trial Registration: Netherlands Trial Register (NTL) NL6417; https://www.trialregister.nl/trial/6417.; International Registered Report Identifier (irrid): DERR1-10.2196/14106.; ©Ángel C Pinto-Bruno, Anne Margriet Pot, Annet Kleiboer, Rose-Marie Droes, Annemieke van Straten. Originally published in JMIR Research Protocols (http://www.researchprotocols.org), 10.10.2019.

This policy briefing is designed for professionals to share some initial insight from our work with Sport England. Further research on carers and inactivity including best practice examples and recommendations will be released in a report later in 2020.

Purpose: Cancer diagnosis and treatment can generate substantial distress for both survivors and their family caregivers. The primary aim of this investigation is to test a model of dyadic interdependence in distress experienced by cancer survivors and their caregivers to determine if each influences the other.; Methods: To test this prediction, 209 Latinas with breast cancer and their family caregivers (dyads) were followed for 4 waves of assessment over the course of 6 months. Both psychological (depression, anxiety, perceived stress) and physical (number of symptoms, symptom distress) indicators of distress were assessed. Longitudinal analyses of dyadic data were performed in accordance with the actor-partner interdependence model.; Results: Findings indicated that psychological distress was interdependent between cancer survivors and their caregivers over the 6 months of observation. However, there was no such evidence of interdependence on indicators of physical distress.; Conclusions: These findings are consistent with emotional contagion processes and point to the potential importance of caregiver well-being for the welfare of Latina breast cancer survivors.

Background: If collectivistic-oriented family carers choose professional care for dependents with dementia, they risk being stigmatised as failing their obligation. This may influence dementia care choices. Research question: How may individualistic and collectivistic values influence choices in dementia care? Method: Qualitative design with in-depth interviews with a total of 29 nurses, 13 family members in Norway and the Balkans and 3 Norwegian dementia care coordinators. A hermeneutic content-focused analysis was used. Ethical considerations: Ethical approval was obtained from the Regional Ethics Committee for Research, South-Eastern Norway, and the nursing homes' leadership. Findings: Family domain reasons why institutionalisation of dependents with dementia was seen as a last resort: obligation towards family members, particularly parents; worry about other family members' reactions and inability to cope with the care for the person with dementia. Social domain reasons: feelings of shame and stigma regarding dementia, particularly in connection with institutionalisation of family members. Discussion: Children's obligation towards their parents is an important aspect of the morality of collectivistic societies. Institutionalising parents with dementia may cause feelings of guilt and shame and worry about being stigmatised and ostracised. To avoid blame and rejection, caregiver(s) try to keep the fact that family members have dementia 'in the family'. The decision to accept professional healthcare for dependents with severe dementia or have them admitted to a geriatric institution was postponed as long as possible. Conclusion: Family care morality may constitute a significant barrier against seeking professional help for persons with dementia, a barrier based on the expectation that the family will care for their old, even when suffering from severe dementia. Hence, stigma and shame may significantly affect the provision of care. Culturally tailored information may encourage family carers to seek professional help before the disruptive influence of the disease makes institutionalisation the only feasible option.

Objectives: This systematic review and meta-analysis assesses the effectiveness of psychological interventions that involve people with dementia or mild cognitive impairment (MCI) and their informal caregivers, and target improvements in the management of the behavioral and psychological symptoms of dementia (BPSD); quality of life; and/or burden reduction for people with either dementia or MCI and their informal caregivers. Methods: Studies were identified through database searches (Cochrane Library, CENTRAL, CINAHL, EMBASE, MEDLINE and PsychINFO) and clinical trials registers (ClinicalTrials.gov and ). Data were pooled for meta-analysis. Results: Database and reference list searches identified 1,878 references, of which fourteen studies were included. Positive effects were found on the anxiety symptoms of people with dementia on the RAID scale; on the quality of life of people with dementia on the self-rated QoL-AD scale; and on informal caregiver burden on the Zarit Burden Interview. Conclusions: Psychological interventions involving whole dyads have some promise for both people with dementia and informal caregivers, but are still far from uniformly effective across BPSD, quality of life, and caregiver burden. Further research directions are discussed.

Purpose: Cancer patients' intimate partners often experience levels of psychological burden that are comparable to or even exceed that of the patients, making it imperative that they too be provided with appropriate psychological support. This review aimed to present the content and the effects of interventions delivered to caregiving partners of cancer patients on both partners and patients. Furthermore, we provide information about the acceptability of the interventions and study quality. Methods: An initial search in Web of Science, PsycINFO, and PubMed databases was conducted. We included RCTs as well as pre-post studies that focused on enhancing partners' wellbeing or diminishing partners' distress. To be included, interventions had to have been offered to partners either only or predominantly. We included studies published until December 2017. The methodological quality of the trials was assessed with the EPHPP assessment tool. Results: Nine studies met the inclusion criteria. Intervention topics included social support, short-term problem solving, the marital relationship quality, role expectations, emotional resilience, and coping strategies. Positive intervention effects were found with regard to social support, emotional distress, improved communication, posttraumatic growth, self-efficacy, and coping. Despite considerably low response rates, the interventions were generally well accepted. Most of the studies suffer limitations because of methodological flaws, the lack of randomization, and small sample sizes. Conclusion: Interventions delivered to partners of cancer patients may have positive effects on both partners and patients. We derive several implications for future research: Intervention programs should be tailored to the specific needs of caregiving partners with regard to the cancer trajectory and gender. Effort has to be made to increase sample sizes as well as to include particularly burdened individuals. Selected measurement instruments should be sensitive to specific intervention effects. Finally, information on both statistical as well as clinical relevance of research findings should be provided.

Informal caregiving is a rewarding but demanding role. The present theoretical framework proposes to adapt the tridimensional concept of burnout to informal caregiving as a way to address the potential consequences of caregiving. This adaptation reflects caregivers' reported difficulties, as well as empirical findings on emotional exhaustion, depersonalization, and personal accomplishment as caregiving outcomes. But to understand burnout in informal caregiving contexts, it is also necessary to find ways to model it. The Informal Caregiving Integrative Model (ICIM) is thus proposed. This model is based on the integration of elements from literature on both informal caregiving stress and professional burnout. The goal of the ICIM is to emphasize the importance of every category of determinants of informal caregiver burnout (i.e., relating to the caregiver, the caregiving setting, and the sociocultural context), with a key mediating role for the caregivers' appraisal of their situation and their relationship with the care-recipient. This article is a first integrative step in the consideration of a form of burnout specific to informal caregivers and supports the design of empirical and interventional studies based on the theoretical foundation that the ICIM proposes.

Purpose: Art interventions have demonstrated holistic benefits for persons living with dementia and their caregivers. In this article, we describe the results of a pilot photojournalism program for 10 unpaid caregivers of persons living with dementia, with respect to caregivers’ experience in the program and their psychological well-being. Design: Caregivers participated in four sessions led by a professional photojournalist who taught principles of photography. Between the sessions, caregivers took photographs that represented what caregiving meant to them using digital cameras provided in the program. During the sessions, instruction was interspersed with discussion of caregivers’ photographs. Method: Caregiver burden and depressive symptoms were measured pre- and postprogram. Qualitative exploration included sessions’ observations, viewing caregivers’ photographs, and recording caregivers’ accompanying comments. Findings: For participants with pre- and postprogram data, caregiver burden decreased significantly (p =.037). For caregivers with pre- and postprogram data, depressive symptoms decreased nonsignificantly (p =.066). Clinically meaningful reductions in caregiver burden and depressive symptoms were attained. Qualitative findings highlighted caregivers’ strong engagement with the project, the facilitator, and other participants, and reflection on multiple aspects of their experience. Conclusions: This intervention helped caregivers creatively communicate their experience and demonstrated efficacy in the improvement of caregivers’ psychological well-being. 

Background Gynecologic cancer can create hopelessness and death anxiety and alter the lifestyle of the affected women and their caregivers. Perceived social support may facilitate coping with this illness. Objective The aim of this study was to determine whether hospitalized patients with gynecologic cancer and their caregivers differ in feelings of hopelessness and death anxiety and how those conditions may be related to their social support. Methods Two hundred patients with gynecologic cancer and their 200 caregivers from 1 university hospital were enrolled in this descriptive correlational study. Study measures included a demographic form, the Perceived Social Support Scale, the Beck Hopelessness Scale, and the Thorson-Powell's Death Anxiety Scale. Data were analyzed using Student t test, Pearson correlation test, and linear regression analyses. Results Patients had higher hopelessness and death anxiety compared with caregivers (P < .001). Patients' perceived social support explained 35% of the total variance in hopelessness and 28% of the variance in death anxiety; caregivers' perceived social support explained 40% of the total variance in hopelessness and 12% of the variance in death anxiety. Conclusion Patients felt hopelessness and death anxiety in greater rates than caregivers. Social support had a significant effect on hopelessness and death anxiety of patients and their caregivers. Implications for Practice Nurses, who are the healthcare professionals spending time with patients and families from diagnosis forward, need to evaluate patients and their caregivers for hopelessness and death anxiety and consider their social support systems during this evaluation.

The purpose of this research was to explore the association between state and trait anxiety experienced by patients who had undergone traumatic amputation and their family caregivers. The sample studied consisted of 50 hospitalized patients who had undergone traumatic amputation and 50 family caregivers. The collected data included patients’ and caregivers’ characteristics and the State Trait Anxiety Inventory scores. Fifty percent of patients and caregivers scored below 50 and 47, respectively (median), in trait anxiety. In terms of state anxiety, at least 50% of patients and caregivers scored below 56 and 50.5, respectively. These values indicate moderate to high levels of the impact of amputation on the trait and state anxiety of amputees and their caregivers. A positive linear correlation was found between the trait and state anxiety of the patients as well as between the trait and state anxiety of caregivers, as expected (ρ = 0.915, P <.001, and ρ = 0.920, P <.001, respectively). A statistically significant positive correlation was also observed between state patient anxiety and state anxiety of caregivers (ρ = 0.239 and P =.039) and between trait patient anxiety and trait anxiety of caregivers (ρ = 0.322 and P =.030). More specifically, as the patient’s anxiety score (either trait temporary) increases, the score of the caregivers’ anxiety increases and vice versa. Nurses should be aware of the association between anxiety of amputees and caregivers and, therefore, work in multidisciplinary teams to maximize clinical outcomes for patients after amputation and their families.

Purpose The purpose of this paper is to evaluate the effect of the planned pre-electroconvulsive therapy (ECT) family teaching on depression, anxiety and stress of caregivers of patients with mental disorders receiving ECT. Design/methodology/approach In this quasi-experimental study, 130 participants were randomized allocated into intervention or control groups. The planned family teaching program consisted of four 90 min sessions held during four weeks. Assessments occurred at pre-intervention (one week before the first session), and post-intervention (one months after the four session). Data were collected using demographic questionnaire and Depression, Anxiety and Stress Scale (DASS-21). Mean comparisons were performed using Student’s t-test while effect sizes were estimated by Cohen’s d coefficient. The significance level was considered less than 0.05. Findings The mean scores of the depression, anxiety and stress levels in the intervention group were significantly reduced compared to the control group (p=0.001). Originality/value The family pre-ECT teaching intervention and counseling decreased the depression, anxiety and stress level of family caregivers of patients with mental disorders receiving ECT and the maintenance of other favorable conditions at baseline. These results suggest that even a short-term educational intervention for family members of patients received ECT can improve emotional outcomes of treatment in the family.

Objectives: Informal caregivers of veterans are providing care for a population whose specialized care needs require increased investments on the part of caregivers and for longer durations. Empirical evidence shows negative mental health effects on these caregivers at rates that outpace those seen in caregivers in the general population. With a growing need and limited resources, effective interventions are needed to improve mental health outcomes in this special population of caregivers. Methods: This pilot, randomized control trial tested the effectiveness of a mindfulness-based intervention at improving perceived stress, depressive symptoms, anxiety, and worry compared to waitlist controls in a sample of 23 caregivers of veterans. Results: The Mann-Whitney U tests used to determine whether groups differed in change scores (post minus pre) indicated that there were significant differences between the mindfulness and waitlist control group in perceived stress (U = 21.5, p =.006, r = .57), anxiety (U = 24.0, p =.009, r = .54), and worry (U = 29.5, p =.024, r = .47). Results from the Wilcoxon signed-rank tests indicated that caregivers in the mindfulness group reported a significant reduction in perceived stress (Z = − 2.50, p =.013, r =.75) and anxiety (Z = − 2.81, p =.005, r =.85), whereas the waitlist control group reported higher mean symptoms at the end of the intervention period. Conclusions: Given these promising results, policymakers, health practitioners, and veteran-related programs should increase efforts to provide caregivers of veterans with mindfulness-based interventions to improve mental health outcomes. 

Background: Caring for people with dementia (PWD) is stressful and poses many life challenges for the family caregivers. Interventions targeting the stress and psychological well-being of the caregivers have been proposed but the sustainable effects and efficacies of these interventions vary considerably. Mindfulness-based cognitive therapy (MBCT) has been shown to be effective at reducing stress in several populations. However, limited research on the effects of MBCT in family caregivers of PWD has been conducted. This study protocol aims to examine the effects on stress reduction of a modified MBCT for family caregivers of PWD. Methods: A prospective, single-blind, parallel-group, randomized controlled trial will be adopted. A convenience sample of 100 community-dwelling family caregivers of PWD will be randomized to either the modified MBCT or the control groups. The modified MBCT group will receive a 10-week, seven-session, group-based modified MBCT whereas the control group will receive a social interaction and routine education (SIRE) on dementia care program at a frequency and timing similar to those in the intervention group. The primary outcomes (stress) and secondary outcomes (depression, anxiety, burden, health-related quality of life, and the behavioral and psychological symptoms of the care recipient) will be measured immediately post-intervention (T1) and at 6-month follow-up (T2), which will be compared with the baseline (T0). Discussion: Reducing the stress of caregiving can promote the well-being of the family caregivers and maintain their sustainability in providing daily care for their family members with dementia. MBCT is found to be effective for stress reduction in other populations, and the results of this study are able to provide us with evidence for using MBCT as a standard supportive intervention for the family caregivers of PWD. Trial registration: ClinicalTrials.gov, NCT03354819. Registered on 28 November 2017. 

Background: Caregivers of people with dementia experience high stress levels. Mindfulness-based cognitive therapy has been found to be effective in reducing stress and improving the psychological well-being of several populations. Objective: To explore the feasibility and preliminary effects of a modified mindfulness-based cognitive therapy for family caregivers of people with dementia. Methods: In a single-blinded, parallel-group, randomized controlled trial, 36 caregivers of people with dementia were randomized to either the intervention group, receiving the 7-session modified mindfulness-based cognitive therapy in 10 weeks; or the control group, receiving the usual family care and brief education on dementia care. The brief education sessions were similar in frequency and duration to the intervention group. Various psychological outcomes of caregivers were assessed and compared at baseline, immediately post-intervention, and at the 3-month follow-up. A focus group with eight participants from the intervention group was conducted to identify the strengths, limitations, and difficulties of the intervention. Results: Intervention feasibility was established with a high completion rate of 83% (completing ≥5 out of the 7 sessions) and a low attrition rate of 11.1%. The duration of the average weekly home-based mindfulness practice of the caregivers was 180 minutes (S.D. = 283.8). The intervention group experienced a statistically significant decrease in stress levels (Z = -1.98, p = 0.05, Cohen's d = 0.7) and depressive symptoms (Z = -2.25, p = 0.02, Cohen's d = 0.8) at the post-test; and a decrease in stress (Z = -2.58, p = 0.01, Cohen's d = 0.9), depressive symptoms (Z = -2.20, p = 0.03, Cohen's d = 0.7), and burden (Z = - 2.74, p = 0.006, Cohen's d = 1.0), and improved quality of life (physical) (Z = -1.68, p = 0.09, Cohen's d = 0.6) at the 3-month follow-up compared to the controls. A focus group conducted immediately after the intervention revealed three major themes: Impacts on the family caregivers, Impacts on the people with dementia, and Difficulty in practicing mindfulness. Conclusion: The findings support the feasibility and preliminary effects of the modified mindfulness-based cognitive therapy on reducing the stress of caregivers and improving their psychological well-being. Some potential effects on people with dementia (e.g., improvements in behavioral problems) were reported by the caregivers. A future study with a larger and more diverse sample is proposed to evaluate the longer-term effects and generalizability of the modified mindfulness-based cognitive therapy and the impacts on people with dementia. 

Objectives: This study aimed to review the effectiveness of low-intensity cognitive behavioral therapy (CBT)-based interventions for informal dementia caregivers when compared to non-active control conditions. Design: Literature searches were conducted in databases of published (PsycINFO, MEDLINE, CINAHL, Scopus) and unpublished (Open Grey, ISRCTN registry, ClinicalTrials.gov, ProQuest) literature. Individual meta-analyses were conducted for each outcome variable. Pooled intervention effect estimates were calculated as Hedge's g using a random-effects model.Included studies: Studies examining the effect of low-intensity CBT-based interventions for informal caregivers for people with any progressive dementia were included. Randomized controlled trials and controlled clinical trials were included. Measurements: Outcomes included the psychological variables of anxiety, depression, burden, and distress (defined as stress or strain). Results: A total of five studies reported anxiety outcomes, 12 reported on depression, three reported on burden, and six reported distress outcomes. Results demonstrated a significant effect of low-intensity CBT-based interventions in reducing all examined psychological difficulties. Small effect sizes were found for anxiety (g = 0.35), depression (g = 0.27), and distress (g = 0.33). A medium effect was found for burden (g = 0.53). Conclusions: The results provide initial support for low-intensity CBT-based interventions for dementia caregivers. Clinical implications and research recommendations are explored. Strengths and limitations of the study are discussed. 

Background: Carers of dependent older people experience high levels of psychological distress. However, little is known about the effects of coping on carer distress over time. In this one year longitudinal study we investigated the relationship between distress, and coping strategies in a representative sample of family carers living in Spain. Methods: Primary carers of older people were recruited (N = 200). We used probability sampling and collected data via individual interviews from 2013 to 2015. Variables investigated included psychological distress, coping, and levels of objective and subjective burden. Panel data analysis was used to test a model of association of psychological distress, and coping strategies controlling for key confounders. Results: Acceptance and emotional support were the most frequently used strategies, whereas behavioural disengagement and humour were the least used. In the panel data regressions, positive reframing (B = -0.79, p < 0.001), self-distraction (B = -0.46, p = 0.034), substance use (B = 0.57, p < 0.001) and denial (B = 0.57, p = 0,049) were significantly related to psychological distress at one year follow-up. Limitations: Limitations include participant drop out and assessing substance use coping via a brief measure. Conclusions: Positive reframing and self-distraction were longitudinally associated with lower levels of carer psychological distress. Using denial and substance use coping increased distress long-term. Our results suggest that interventions that focus on positive reframing and assisting carers in decreasing dysfunctional coping may be useful therapeutic targets mitigating carer psychological morbidity. 

Objectives: To examine the effects of the group benefit-finding therapeutic intervention (BFT) for Alzheimer family caregivers up to 10-month follow-up. Methods: This was a cluster-randomized double-blind controlled trial in social centers and clinics. Participants included 129 caregivers. Inclusion criteria were 1) primary caregiver aged 18 years and older and without cognitive impairment, 2) providing 14 or more care hours per week to a relative with mild-to-moderate Alzheimer disease, and 3) scoring 3 or more on the Hamilton Depression Rating Scale. Exclusion criterion was care-recipient having parkinsonism or other forms of dementia. BFT (using cognitive reappraisal to find positive meanings) was evaluated against two forms of psychoeducation as controls—standard and simplified (lectures only) psychoeducation. All interventions had eight weekly sessions of 2 hours each. Primary outcome was depressive symptoms, whereas secondary outcomes were global burden, role overload, and psychological well-being. Measures were collected at baseline, postintervention, and 4- and 10-month follow-up. Results: Mixed-effects regression showed that BFT's effect on depressive symptoms conformed to a curvilinear pattern, in which the strong initial effect leveled out after postintervention and was maintained up to 10-month follow-up; this was true when compared against either control group. The effect on global burden was less impressive but moderate effect sizes were found at the two follow-ups. For psychological well-being, there was an increase in the BFT group at 4-month follow-up and a return to baseline afterward. No effect on role overload was found. Conclusion: Benefit-finding reduces depressive symptoms as well as global burden in the long-term and increases psychological well-being in the medium-term.

Informal caring at the end of life is often a fraught experience that extends well beyond the death of the person receiving care. However, analyses of informal carers' experiences are frequently demarcated relative to death, for example in relation to anticipatory grief (pre-death) or grief in bereavement (post-death). In contrast to this tendency to epistemologically split pre- and post-death experiences, we analyse informal caring across two separate qualitative interviews with 15 informal carers in one metropolitan city in Australia—one before and one after the death of the person for whom they cared. In doing so, we focus on accounts of care across dying and bereavement including: the evolving ambivalence of carers’ social relations at the end of life and beyond; dying and death as a challenge to the ideal of authenticity; and, the potential for misrecognition and social estrangement in caring relations at the end of life. We draw on social theory addressing the themes of ambivalence, authenticity and recognition to enhance our understanding of caring as a social practice that occurs across dying and bereavement, rather than as structured primarily by the context of one or the other. 

Aim Increasing demands for care provision to older adults require good physical and mental health among caregivers. Few studies have examined the health status and correlates of quality of life among caregivers of older adults. The present study therefore sought to examine the prevalence of chronic physical conditions, psychological distress, and correlates of physical and mental quality of life among caregivers of older adults (≥60 years) in Singapore. Methods Participants were 285 informal caregivers who were providing care to an older relative. Participants were recruited at the Institute of Mental Health, Singapore, and they completed self-report measures on chronic physical morbidity, psychological distress, and physical and mental quality of life. Multiple regression models were constructed to examine correlates of physical and mental quality of life. Results More than half of the caregivers had at least one chronic physical condition (58.6%) and psychological distress (52.6%). Chronic physical morbidity, psychological distress, and secondary education status were associated with lower physical quality of life. Psychological distress, younger age, primary education status, and more time spent caregiving were associated with lower mental quality of life. Conclusion Poor physical and mental health among caregivers may impair their ability to provide adequate care to older adults with progressive medical needs. It is important for medical practitioners not to neglect the physical and mental health of caregivers through continued assessment of chronic physical morbidity, psychological distress, and quality of life.

Purpose: We aimed to assess the influence of anxiety and depression on the physical and mental quality of life (QoL) in patient with chronic obstructive pulmonary disease (COPD) and caregiver dyads, detect the simultaneous effect of anxiety and depression of each partner on the other’s QoL and determine the dyadic patterns. Methods: A cross-sectional descriptive design was used. The actor–partner interdependence model estimated by structural equation modeling was used for the dyadic analysis. Patient Health Questionnaire-9 (PHQ-9), Generalized Anxiety Disorder-7 (GAD-7) and 12-Item Short-Form Health Survey (SF-12) were used to measure depression, anxiety and QoL, respectively. Results: Eighty COPD dyads were enrolled in the study. Patients presented higher depression symptoms and poorer physical and mental QoL than their caregivers, whereas comparable levels of anxiety were found in patients and caregivers. The model exploring the effects of depression and anxiety on mental QoL found that patients’ depressive symptoms negatively influence their mental QoL, and caregivers’ anxiety and depression symptoms negatively impact their mental QoL. The model exploring the effects of anxiety and depression on physical QoL detected one statistically significant actor effect with patients’ depressive symptoms negatively influencing their physical QoL, and two partner effects with caregivers’ anxiety worsening patients’ physical QoL and caregivers’ depression improving patients’ physical QoL. Conclusions: The results suggest that caregivers’ psychological distress influences caregivers’ mental QoL and patients’ physical QoL. Therefore, health-care professionals should assess and treat anxiety and depression in both members of the COPD dyad to improve their QoL.

Objectives: To explore and compare levels of mental health, care burden, and relationship satisfaction among caregiving spouses of people with mild cognitive impairment or dementia in Parkinson disease (PD-MCI or PDD) or dementia with Lewy bodies (DLB). Methods: Spouses (n = 136) completed measures of mood, stress, resilience, general health, quality of life, care burden, and relationship satisfaction, as well as sociodemographic factors. Additionally, data on motor and neuropsychiatric symptom severity of people with PD-MCI, PDD, or DLB were obtained in a subsample. Results: Most spouses were married women (>85%) who provided a median of 4 years of care and 84 hours of weekly care. Among these, relationship dissatisfaction, stress, anxiety, care burden, and feelings of resentment were common. Spouses of people with PDD and DLB had significantly higher rates of burden, resentment, and depression compared to spouses of people with PD-MCI. Furthermore, unique group differences emerged whereby spouses of people with PDD had significantly longer duration of care provision, higher stress, more relationship dissatisfaction, and fewer positive interactions, compared to PD-MCI group, whereas anxiety and lower levels of mental health were prominent in spouses of people with DLB, compared to PD-MCI group. Despite this, the majority of spouses reported good quality of life, resilience, and satisfaction with the caring role. Conclusion: Both PDD and DLB significantly contribute to poorer mental health and higher levels of care burden in spouses. Clinicians should actively screen the risk of burden, stress, depression, and anxiety among caregiving spouses of people with these conditions.

Caregiving can be experienced as a stressful process, which can cause psychological and physical consequences. The combination of prolonged stress and the physical demands of caregiving may impair the physiological functioning of caregivers and increase the risk of health problems creating considerable stress in the life of caregivers regarding emotional, physical, social and financial areas. This literature review explored studies that used measures of the autonomic nervous system in caregivers of oncology patients such as electrodermal and cardiovascular (re)activity. The results revealed that caregivers had elevated stress levels and a serious autonomic imbalance that may, in the long term, trigger negative health consequences such as infectious diseases, cancer progression, cardiovascular disease and even premature death. The results showed the need to carry out preventive strategies in this population, in order to improve the autonomic profile of caregivers of cancer patients.

The objectives of this study were to (1) analyze the circumstances of caregivers of elderly individuals with disabilities; (2) present their levels of care stress; (3) examine family, market, and government factors that help reduce this care stress; and (4) identify the most effective method of alleviating stress for these individuals. Face-to-face interviews were conducted using standardized questionnaires. Caregivers experienced a moderate level of stress, which increased with time. Spouse caregivers experienced highest care stress, with psychological stress being greatest. All caregiver groups received different levels of care assistance from family, market, and government. Most received support from family, few paid for professional care market services, and most were unsatisfied with government care services. Stress was associated differently with care time, care assistance, and sociodemographic characteristics. Spouse caregivers, psychological counseling, and quality of public care services require further attention, with an integrated care system required to help alleviate care stress among caregivers.

Background: Informal caregivers provide a large amount of day-to-day assistance and are crucial for the ability of survivors to recover and adapt to life after stroke.; Aim: The development of caregiver support programs is limited by lack of large long-term follow-up studies. We present a comprehensive study of Swedish stroke caregivers' life situation in relation to degree of functional dependency of the survivor.; Patients and Methods: In 2016, the Swedish Stroke Register, Riksstroke, conducted a long-term follow-up survey on caregivers to patients with stroke three and five years earlier. Items on psychological well-being were adapted from the 36-item short-form health survey and poor outcome was defined using the 36-item short-form health survey reference material. Survivor degree of dependency was indicated by the caregiver as independent, partially dependent, or completely dependent.; Results: A total of 5063 community dwelling dyads were included: 56.5% of survivors were independent, 33.4% partially dependent, and 10.1% completely dependent. Caregiver life impact, need of support, and proportion of poor psychological well-being increased incrementally with survivor degree of dependency. In the completely dependent group where 41.1% of survivors could not be left unattended for more than 1 h, 23.7% of caregivers expressed unmet need of caregiver support; 51.4% reported poor psychological well-being compared to 19.3% in the independent group.; Conclusion: The caregiver situation varies greatly with degree of survivor dependency which makes generalizations of caregiver needs difficult. Our results emphasize the need for integrating support aimed specifically at caregivers to survivors of stroke with a large degree of dependency.

Extended longevity among adults with Intellectual Disabilities (ID) and increasing rates of diagnosis of Autism Spectrum Disorders (ASD) mean that parents are unlikely to remain primary carers throughout the lifecourse of adults with ID and ASD. In the context of decreased funding for disability services and policy moves toward de-congregated living, non-disabled (ND) siblings of people with ID/ASD are increasingly likely to be drawn into support and care roles for their siblings. Drawing on literature on moral emotions and the ethics of care, and on narratives collected from 25 ND siblings in Ireland in 2015/6, this paper explores the emotional dynamics entwined in the care and support roles ND siblings engage in. Findings indicate that relationships forged in childhood underpinned the moral ethic to care exhibited by many participants and that their caregiving was experienced as moral practice and emotional engagement, shaped by and constitutive of biography and moral identity. When making care choices, siblings undertook evaluative judgement of their own behaviours, which was informed by perceptions about obligations to care and about what constitutes good care. Decisions about care had emotional resonance, with guilt, other-oriented empathy and righteous-anger emerging as the key emotions in the narratives. Dilemmas between autonomy and relatedness caused siblings to grapple with feelings of resentment and guilt, and many struggled to exercise self-compassion in the face of perceived moral failings. Others experienced conflict characterised by a struggle to reconcile competing care and nurturing expectations within their intimate relationships. Through ongoing self-evaluation of their care behaviours siblings' moral identities were continually reconstituted. It is imperative that service providers and professionals understand and acknowledge such moral and emotional dynamics when working with people with ID/ASD and their families. 

• Explores care practices and aspirations of siblings of people with ID/ASD.
• Reveals how moral emotions of guilt, anger and self-compassion shape the moral identities of carers.
• Argues that looking at care from the perspective of emotions can inform supports for carers. 

Background: Approximately seven million people in the UK are engaged in informal caregiving. Informal caregivers are at risk of poorer mental and physical health. However, less is known about how the relationship between the informal caregiving and psychological distress changes over time. The aim of this study was to investigate longitudinal associations between the informal caregiving and psychological distress amongst UK men and women aged 16+. Methods: Data were analysed from the UK Household Longitudinal Study (UKHLS, n = 9368), a nationally representative study of UK households. Longitudinal linear mixed modelling was used to estimate associations between the longitudinal patterns of informal caregiving (non-caregiver/one episode of 1–2 years/intermittent caregiving/3+ years caregiving) and trajectories of psychological distress across seven waves of UKHLS data. Results: Informal caregiving was not associated with psychological distress for men. Women engaged in long-term (⩾3 years) or intermittent caregiving had higher levels of psychological distress at the point of initiation, compared with women who were not caregivers throughout the study period (3+ years caregiver: regression coefficient 0.48, 95% confidence interval (CI) 0.07–0.89; intermittent caregiver: regression coefficient 0.47, 95% CI 0.02–0.92). Trajectories of psychological distress changed little over time, suggesting a plateau effect for these caregiving women. Conclusions: Women engaged in long-term or repeated shorter episodes of informal caregiving reported more symptoms of psychological distress than non-caregiving women. Given the increased risk of reporting psychological distress and the increasing importance of the informal care sector, the risk of poorer mental health of informal caregivers should be a priority for public health. 

Objective: Cancer and its treatment are highly stressful events that may significantly affect the daily emotional well-being of patients and their informal caregivers. Patient- and caregiver-reported received and provided support may contribute to both dyad members' fluctuation in daily affect, but few studies have examined these associations from a dyadic perspective so far. The current study examined predictions derived from 3 theories on patterns of relations between subjectively assessed dyadic provided and received support and daily affect within dyad members: (a) invisible support theory, (b) the suggestion that providing support may be better than receiving it, and (c) beneficial supportive equity. Method: Actor-partner interdependence models were tested using 28-day diary data from 200 patient-caregiver dyads. Diary assessments started on the first day following patients' discharge from the hospital, that is, about 3 weeks following patients' hematopoietic stem ceil transplantation (HSCT). Results: Daily invisible support was not related to more positive indicators of patients' or caregivers' daily affect. For patients' affect, findings generally supported the hypothesis of psychological benefits of support provision over receipt, in both concurrent and lagged analyses. For caregivers, visible received support from patients and supportive equity (i.e., both provided and received support relatively high), both concurrently and lagged, were related with better emotional state. Conclusions: The findings highlight the costs, benefits, and complexities of daily support transactions in dyads following HSCT, thus indicating the practical implications of the study: the importance of screening for support needs and abilities in both patients and caregivers.

Informal dementia caregivers are thought to experience high levels of depression and burden, which can contribute to worse cognitive functioning. However, poorer cognitive functioning in caregivers is not always found. The current study explored whether caregivers perform better, worse, or similar to non-caregivers on tasks for executive functioning and memory. Whether sociodemographic and psychosocial characteristics are associated with caregivers' performance was also assessed. One hundred forty-five caregivers completed the Letter Fluency and Category Fluency, the Logical Memory test from the WMS-III, and five questionnaires assessing psychological characteristics. Standardized -scores (based on age, education, and sex) were calculated using data from a matched control group (187 non-caregivers). One sample -tests were executed to examine if the caregivers' standardized mean -score significantly deviated from the population mean of  = 0. The -scores were used as dependent variables in multivariable regression analyses. The caregivers performed significantly better on Logical Memory - Immediate Recall than non-caregivers ( = 2.92, = .004). The obtained -scores on the other tasks did not deviate significantly from 0. Male sex and social reliance predicted higher scores on Category Fluency, but the -test was non-significant, and the explained variance was low (adjusted = .068). We found no evidence for poorer cognitive performance among informal caregivers compared to non-caregivers. Our results suggest that caregiving for a loved one with dementia does not impair the caregivers' episodic memory or executive functioning when measured cross-sectionally.

Objective: The family caregivers of patients receiving palliative care experience high levels of anxiety and depression. The aim of the present study was to investigate the factors associated with family caregivers' anxiety and depression when caring for patients with advanced cancer in Greece.; Methods: The sample consisted of 100 patients undergoing palliative radiotherapy and their respective caregivers. Patients completed the Hospital Anxiety and Depression Scale (HADS) and the MD Anderson Symptom Inventory. Their respective caregivers completed the Oberst Caregiving Burden Scale, the Bakas Caregiving Outcomes Scale, and the HADS. Correlational and multiple regression analyses were conducted to identify potential predictors of anxiety and depression.; Results: The majority of patients were male (63.0%), whereas the majority of their caregivers were female (76.0%). The mean ages of patients and caregivers were 63.9 ± 10.8 and 53.3 ± 12.6 years, respectively. Caregiving anxiety and depression were associated with patients' variables, such as gender (P < 0.0005), primary cancer (P = 0.008), and past surgery (P = 0.002), and caregiver's variables, such as gender (P = 0.001), co-residence (P = 0.05), previous care experience (P = 0.04), and means of transport (P = 0.038). In multiple regression analyses, caregiving anxiety and depression were significantly predicted by caregivers' and patients' characteristics, in a model that accounted for 48% of the anxiety variance (P < 0.0005) and 39% of the depression variance (P < 0.0005).; Conclusion: The caregivers who experienced more anxiety and depression shared the following traits: they were women, cared for men with lung cancer, cared for patients not undergoing surgery, lived together, were younger, went to the hospital by private means of transport, had previous care experience, and perceived an increased degree of general burden. Further investigation of the factors that may affect caregivers' psychological state is required to better identify parameters that may predict it.

Aims and Objectives: This study aimed to analyse the prevalence and factors associated with suicidal ideation among family caregivers of people with mental disorders.; Background: Studies conducted with family caregivers of people with dementia and cancer point out a high prevalence of suicidal ideation among these subjects; however, this aspect has not yet been investigated among family caregivers of people with mental disorders.; Design: This is a cross-sectional study, conducted with 537 family caregivers of patients from 16 Psychosocial Care Centers (CAPS) of the 21st Health Region of the state of Rio Grande do Sul, Brazil.; Methods: Question 17 of the Self-Reporting Questionnaire (SRQ-20) was used for suicidal ideation screening. The prevalence of suicidal ideation was calculated according to sociodemographic and care variables, with confidence interval estimate (95% CI). Crude and adjusted odds ratios were calculated by logistic regression. The Guidelines to Reporting of Observational Studies in Epidemiology (STROBE Statement) was adhered in this study (See File S1).; Results: The prevalence of suicidal ideation found in this study for the 30 days preceding the interview was 12.5% (95% CI: 10-15). The factors associated with the outcome were lower age, lower schooling, feeling of burden, self-report of stress problem and dissatisfaction with family relationships.; Conclusion: The prevalence of suicidal ideation among the studied family caregivers was high and strongly associated with issues regarding care, showing the need for interventions that provide support.; Relevance For Clinical Practice: Nurses are a large part of the workforce of the community mental health services. The careful characterisation of the subjects who show suicidal ideation, as performed in this study, may reveal specificities capable of refining the diagnostic potential for establishment of action plans in a timely manner, avoiding possible attempts or even the consummation of suicide.

Background: This paper describes the Co-Care-KIT, a reflective toolkit designed to provide insights into the diverse experiences of home-based informal caregivers during the delivery of care to a relative or loved one.  Objective: The aim of this study was to evaluate the toolkit, including a custom-designed journal, tools for photography-based experience sampling, and heart rate tracking, which enables caregivers to collect and reflect on their positive and negative daily experiences in situ. Methods: A 2-week field study with informal caregivers (N=7) was conducted to evaluate the Co-Care-KIT and to capture their daily personal emotional experiences. The collected data samples were analyzed and used for collaborative dialogue between the researcher and caregiver. Results: The results suggest that the toolkit (1) increased caregivers’ awareness of their own well-being through in situ reflection on their experiences; (2) empowered caregivers to share their identities and experiences as a caregiver within their social networks; (3) enabled the capturing of particularly positive experiences; and (4) provided caregivers reassurance with regards to their own mental health. Conclusion: By enabling capturing and collaborative reflection, the kit helped to gain a new understanding of caregivers’ day-to-day needs and emotional experiences.

Objective: The issues surrounding a patient's terminal phase of cancer and the imminent death of the individual represent a major family crisis affecting all its members. The goal of this study was to assess the prevalence of psychological morbidity in family caregivers of persons with terminal cancer in terms of psychological distress, depression, anxiety, somatization, and complicated anticipatory grief, and to determine which factors may influence these responses. Method: One hundred and twelve family caregivers of individuals with terminal cancer completed an assessment protocol comprising the Brief Symptom Inventory (depression, anxiety, somatization, and a computed score for global distress), the Marwit-Meuser Caregiver Grief Inventory - Short Form (anticipatory grief), the Family Inventory of Needs (importance and satisfaction of needs), and the Systemic Clinical Outcome Routine Evaluation -15 (family functioning). Prevalence of psychological morbidity was determined through descriptive and frequency statistics. Predictors of psychological morbidity were ascertained through structural equation modelling methods.  Result Regarding the prevalence of psychological morbidity in family caregivers, 66.1% reported high levels of distress, 68.8% showed high risk of depression, 72.3% showed high risk of anxiety, 50.9% reported high levels of somatization, and 25.9% showed high risk of complicated anticipatory grief. It was found that the predictors of age, gender, relationship to the family member with terminal cancer, the caregiving role played (i.e., primary vs. nonprimary), the satisfaction of needs by healthcare professionals, and family functioning play an important role in terms of one's risk of developing psychological morbidity. Significance of results This study revealed an alarming prevalence of psychological morbidity in family caregivers of individuals living with terminal cancer, making it crucial to move forward from a patient-centered approach to a family-centrad approach to reduce the risk of family maladjustment when facing the imminent death of a family member and to prevent postdeath unadjusted responses.

Objectives: The expected rise in the number of persons with dementia is accompanied by an increasing interest in understanding and reducing the stigmatic beliefs experienced by family caregivers of persons with the disease. While researchers have recently distinguished between family caregivers' perceptions of public stereotypes (i.e., courtesy stigma) and the internalization of these perceptions (i.e., affiliate stigma), no study has yet assessed the characteristics of dementia caregivers who internalize courtesy stigma and how they do so. The aim of this study was to examine the characteristics of family caregivers of persons with dementia who internalize courtesy stigma, and to investigate this internalization process.; Method: Structured face-to-face interviews were conducted with 175 Israeli Arab family caregivers (87.4% female; 71.4% adult children; mean age = 54.28) for persons with Alzheimer's disease.; Results: Overall, half of the participants reported experiencing affiliate stigma as a result of taking care of a relative with dementia. Regression analyses showed that lower educational level, increased courtesy stigma and lower levels of social support were the main predictors of affiliate stigma. Social support partially mediated the association between courtesy and affiliate stigma.; Conclusion: Our findings provide important insights for the conceptual understanding and the development of interventions to reduce stigma among family caregivers of persons with dementia.;

Seizure disorders affect not only the individual living with seizures, but also those caring for them. Carer–patient relationships may be influenced by, and have an influence on, some aspects of living with seizure disorders — with potentially different interactions seen in epilepsy and psychogenic nonepileptic seizures (PNES). We studied the influence of patient and carer attachment style and relationship quality on carer wellbeing and psychological distress, and explored whether these associations differ between carers for people with epilepsy and for those with PNES. Consecutive adult patients with epilepsy (N = 66) and PNES (N = 16) and their primary informal carers completed questionnaires about relationship quality, attachment style, and psychopathological symptom burden. We used correlation analysis to identify associations between relationship quality, attachment style, and carer depression, anxiety, and wellbeing; and to explore differences in these associations between carers for people with epilepsy and for those with PNES. Overall, 25.3% of carers for people with epilepsy or PNES had scores above the clinical cutoff for depression and 39.6% for anxiety; significantly more carers for people with PNES reported clinically significant depression (47.1% vs. 20.0%), but there was no difference in anxiety rates likely to be of clinical relevance. Correlations differed significantly between carers for people with epilepsy and for those with PNES in terms of patient quality of life and carer anxiety (r E = − 0.577, r PNES = − 0.025); seizure severity and carer depression (r E = 0.248, r PNES = − 0.333) and mental wellbeing (r E = − 0.356, r PNES = 0.264); patient depression and carer anxiety (r E = 0.387, r PNES = − 0.266); and patient anxious attachment and carer anxiety (r E = 0.382, r PNES = 0.155). Clinically evident levels of psychological distress are prevalent among carers for people with epilepsy and PNES. Clinical and relationship variables affect carer quality of life differently depending on whether care is provided for individuals with epilepsy or PNES. • Carers for people with seizure disorders experience high levels of depression and anxiety. • Mental wellbeing in this group correlates with relationship conflict, and patient and carer attachment styles. • These associations differ between carers for people with epilepsy and for those with psychogenic non-epileptic seizures. 

Background: Sleep disturbance is common and can have harmful psychological and physical effects. While sleep problems in children with Down syndrome (DS) have received a reasonable amount of attention, very little has been written about this topic in adults with DS.; Method: The present study consisted of an online survey completed by 100 family carers of adults with DS.; Results: High rates of sleep problems of different types were reported in the adults with DS comparable to those found in children with DS in previous research. Significant associations were found between sleep problems and body mass index, excessive daytime sleepiness and a range of health and psychological problems. Low rates of treatments for sleep problems were reported. The majority of family caregivers felt their own sleep was affected.; Conclusions: Sleep problems in adults with DS are common and varied. Assessment and treatment of such problems are likely to improve quality of life.

Aims and objectives: To explore the impact of early‐stage dementia on care recipient/carer dyads' confidence or belief in their capacity to manage the behavioural and functional changes associated with dementia and to access appropriate support networks. Background: Living with dementia has predominantly been explored from the carer perspective and focused on the stress and burden of supporting a person with dementia. There has been a shift towards a more positive discourse to accommodate the role of self‐efficacy in supporting self‐management by people living with dementia. However, little has been reported on the dyadic experience of self‐efficacy in managing life with dementia. Design: A qualitative study using an interpretive descriptive approach. Semi‐structured interviews were conducted with 13 dyads in the early stages of dementia. The collected data underwent a process of thematic analysis. The study followed the COnsolidated criteria for REporting Qualitative research (COREQ) checklist. Results: Dyadic adjustment to dementia was dynamic, involving shifts between loss and adaptation. Threats to self‐efficacy, declining autonomy and stigma, were significant causes of concern for both members of the dyad. Dyadic self‐efficacy was demonstrated through recognition of and adaptation to dementia‐related changes and development of coping strategies to integrate impairment into everyday life. Conclusions: Solution‐focused approaches that improve knowledge and skills enable the dyad to adjust. The considerable impact of stigma on self‐efficacy indicates that supportive disclosure strategies developed in mental health may also have a role to play in dementia interventions. Relevance to clinical practice: Nurses play a significant role in advising and supporting care recipient/carer dyads with dementia, and a better understanding of the dyadic perspective provides them with essential information to support self‐management. A proactive approach including information and support, offered at the beginning of the condition/care trajectory, may have the potential to delay progression into more dependent stages.

Introduction: Many studies have investigated the correlates of affiliate stigma among family caregivers of people with mental illness (PWMI). Thus far, no systematic review or meta‐analysis has been conducted to synthesize these results. Aims/Question: This review aims to identify the correlates of affiliate stigma among family caregivers of PWMI. Method: We searched four databases including PubMed, PsycINFO, EMBASE and Web of Science for studies that investigated the association of affiliate sigma with socio‐demographic, psychosocial and disease‐related factors. Results: Twenty‐two studies including 3,381 participants met the inclusion criteria. Eighteen variables were included for the meta‐analysis. For disease‐related characteristics, only "disease attribution" and "care time/day" were associated with affiliate stigma. For psychosocial characteristics, "support from others," "burden," "depression," "stress," "distress" and "face concern" were related to affiliate stigma. Discussion: This review is the first to assess the association of affiliate stigma with other characteristics of interest. However, the findings are limited due to a very small number of studies. Researchers should conduct in‐depth study in this area and improve the quality of the literature. Implications for practice: Health‐focused interventions for family caregivers such as respite care, self‐help groups, online support program and psychosocial education can mediate the impact of affiliated stigma.

Background: Dementia is prevalent among older adults and frequently causes dependence on family caregivers. Caregivers may experience a form of stigmatization called affiliate stigma that negatively affects their mental health. The current study sought to establish the psychometric properties of a tool to measure affiliate stigma among Iranian caregivers. Methods: Overall, 541 caregivers of older people with dementia were included in this cross sectional study. Several measures were used to assess the psychometric properties of the Affiliate Stigma Scale (ASS) including the Zarit Burden Interview (ZBI), Hospital Anxiety and Depression Scale (HADS), Short Form 12 (SF-12), Rosenberg Self-Esteem Scale (RSES), and Multidimensional Scale of Perceived Social Support (MSPSS). Convergent and discriminate validity were examined.Exploratory and confirmatory factor analyses were utilized to assess the factor structure of the Ass and a Rasch model was used to evaluate the measurement functioning of the scale. Results: Factor loadings ranged from 0.69 to 0.83 and test-retest reliability from 0.72 to 0.89.Item difficulty ranged widely from -0.66 to 0.89. No considerable differential item functioning (DIF) was found across gender. Confirmatory factor analysis confirmed the three cognitive,effective, and behavioral dimensions of the scale (comparative fit index [CFI]=0.931 to 0.995,root mean square error of approximation [RMSEA]=0.046 to 0.068). Internal consistency was acceptable (Cronbach's α: 0.88 to 0.94). Significant and positive relationships were found between affiliate stigma and depression, anxiety, and care giving burden (β =0.35 to 0.46). Conclusion: The ASS is a psychometrically valid measure for assessing affiliate stigma in Iranian caregivers of people with dementia. Application of this tool among other caregivers, language sand cultures deserves further study.

Background: Family members frequently provide long-term care for stroke survivors, which can lead to psychological strain, particularly in the presence of cognitive decline.; Objectives: To profile anxious and depressive symptoms of family caregivers at 5 years post-stroke, and to explore associations with stroke survivor cognitive decline.; Methods: As part of a 5-year follow-up of the Action on Secondary Prevention Interventions and Rehabilitation in Stroke (ASPIRE-S) cohort of stroke survivors, family members completed a self-report questionnaire. Symptoms of anxiety and depression were assessed using the HADS-A and CES-D. Cognitive decline in stroke survivors was assessed from the caregiver's perspective using the IQCODE, with cognitive performance assessed by the MoCA. Data were analyzed using logistic regression models.; Results: 78 family members participated; 25.5% exhibited depressive symptoms, 19.4% had symptoms of anxiety. Eleven stroke survivors (16.7%) had evidence of cognitive decline according to both the IQCODE and MoCA. Family members of stroke survivors with cognitive decline were significantly more likely to report symptoms of depression [age-adjusted OR (95% CI): 5.94 (1.14, 30.89)] or anxiety [age-adjusted OR (95% CI): 5.64 (1.24, 25.54)] than family members of stroke survivors without cognitive decline.; Conclusions: One-fifth of family caregivers exhibited symptoms of anxiety and one-quarter symptoms of depression at 5 years post-stroke. Stroke survivor cognitive decline was significantly associated with both depressive and anxious symptoms of family caregivers. Family members play a key role in the care and rehabilitation of stroke patients; enhancing their psychological wellbeing and identifying unmet needs are essential to improving outcomes for stroke survivors and families.

This review systematically reviewed the therapeutic effects for people with LTCs and their family caregivers learning MBIs [Mindfulness-based interventions] together in a partnership. The review asked what changes in psychological wellbeing or interpersonal factors do people with LTC and their family caregivers experience when learning MBI together in a partnership.

Families play a crucial role in determining the mental health of the autistic individual(s) they are caring for. However, the stigma associated with autism can impair caregiver health. To investigate this, empirical evidence pertaining to stigma's impact on informal caregivers' mental health was systematically reviewed. All twelve included studies (n = 1442 informal caregivers) consistently reported the impact of autism related stigma upon caregiver mental health to be significant, meaningful and complex. A new theoretical framework describing the relationship between stigma and caregiver mental health is constructed. Moderating variables include those both changeable through intervention (e.g. hopelessness, self-esteem, self-compassion) and not changeable (gender, culture, financial burden and time since diagnosis). Implications and recommendations for professionals, interventions and future research are proposed.

Palliative and hospice care aims to improve quality of life of patients' relatives, but still little is known about their specific problems and needs. We present a comprehensive literature update. Narrative review to present an expert overview of peer-reviewed, English-written original research publications and reviews on psychosocial and existential problems, supportive needs as well as interventions for relatives during the patients' disease trajectory published between January 2017 and November 2018. A total of 64 publications were included. Relatives report high rates of psychological and existential distress, burden and psychological morbidity during the total disease trajectory of the patient. In addition, relatives report an alarmingly high number of unmet needs with information being the central issue. Relatives' problems and needs are part of complex systems influenced by various socio-demographic factors and patient⁻relatives-interactions and dependency between different psychological phenomena. First support interventions for relatives during disease trajectory have proven feasible and secondary data from randomized studies suggest beneficial effects of providing early palliative care also for relatives. Relatives should be addressed to a still larger extent in the daily practice of palliative and hospice care, thus further research to reveal more detailed systematic information is needed to improve relatives' psychological burden and quality of life.

A cross-sectional descriptive correlation study was performed to investigate the risk of posttraumatic stress disorder (PTSD) among 300 family caregivers of individuals with schizophrenia or bipolar disorder and examine the relationship between perceived social support and risk of PTSD. The Arabic version of the PTSD Checklist for DSM-5 (APCL-5) was used to investigate risk of PTSD; the Arabic version of the Multidimensional Scale of Perceived Social Support was used to measure perceived social support. Mean score of the APCL-5 was 46.1, indicating risk of PTSD among family caregivers. A negative moderate correlation was found between risk of PTSD and perceived social support. The caring process is demanding and highly stressful, putting family caregivers at risk for PTSD. Social support is crucial in decreasing this risk. [Journal of Psychosocial Nursing and Mental Health Services, xx(x), xx-xx.].; Copyright 2019, SLACK Incorporated.

Purpose: The burden of caring for a family member or friend can have a negative impact on caregiver health and well-being, yet caring can also have positive consequences. Understanding the factors that may enhance caregiver well-being is merited.; Methods: We used data gathered from the European Quality of Life Survey (EQLS). Using complete case analysis followed by multiple imputation analysis, a series of multilevel regression models were developed to systematically explore the role of three distinct blocks of factors in predicting caregiver well-being as measured by the WHO-5 well-being index: (1) sociodemographic and health factors, (2) care and burden-related factors, and (3) psychological and social appraisals. Differences between frequent caregivers and the general population were also compared on all measures.; Results: 36,908 respondents took part in EQLS, with 4171 (11%) identifying as frequent carers. While frequent caregivers reported lower well-being compared to the remaining population, most were happy with the amount of time spent caring. Our model explained approximately 32% of variance in well-being scores. After examining the role of known risk factors, all positive psychological appraisals were associated with higher well-being (p < .001). In order of magnitude these were optimism, perceived autonomy, sense of purpose, resilience, and perceived levels of social inclusion. Self-rated health was the strongest predictor of well-being while female carers and those with high levels of various burden measures reported lower well-being.; Conclusions: Findings suggest that caregiver well-being is influenced by more than simply the burden of care. As well as attempting to reduce burden, interventions aimed at supporting caregivers could focus on fostering more positive appraisals to enhance well-being in this group.

Background: Alzheimer's disease and related dementias are irreversible, progressive brain disorders that slowly destroy memory, language, problem solving, and cognition. In the United States, dementia is the fifth leading cause of death for people age 65 years and older. Early diagnosis could have important benefits stigma related to dementia remains a significant impediment to diagnosis, treatment, and accessing services. While a growing body of research documents the existence and negative outcomes of stigma, less is known about how dementia-related stigma produces ill effects.; Aims: The purpose of this study was to use qualitative methods to explore how stigma manifests within families from the perspective of family caregivers of people with dementia.; Method: Using a grounded theory approach, we interviewed 13 family caregivers of people with dementia.; Results: Shame emerged as the central theme experienced by family caregivers of people with dementia. Attempting to manage shame, produced three categories of responses: (1) silencing and not calling attention to the symptoms, (2) concealing the diagnosis, and (3) shunning and avoiding contact.; Conclusions: Shame may be an underlying mechanism by which stigma is enacted and perpetuated, resulting in caregivers' isolation and delay in access to diagnostic and supportive services. Efforts to dispel the misconception that dementia is a shameful disease may be one way to diminish stigma.

This editorial discusses the availability of resources to support carers and recommends a better focus on family-centred care.

Rationale: Family members of critically-ill patients hospitalized in the intensive care unit (ICU) often become caregivers and they are at risk to develop adverse psychological outcomes. There is a need to understand the psychological impact of critical illness on family caregivers.; Objectives: The aim of this systematic review is to document the prevalence of depression, anxiety, and posttraumatic stress disorder (PTSD) in family caregivers of critically-ill patients and identify potential risk factors for psychological outcomes to inform clinical and future research recommendations.; Methods: A literature search for psychological outcomes for family caregivers of critically-ill patients was conducted. A total of 1,148 studies from PsycINFO, CINAHL, Web of Science, SCOPUS and Medline were identified.; Results: Forty studies met inclusion criteria and were included in the review. The prevalence of psychological outcomes in family caregivers ranged from 4% to 94% for depression, 2% to 80% for anxiety, and 3% to 62% for PTSD. Caregiver depression, anxiety, and PTSD decreased in most studies that assessed longitudinal outcomes. Common risk factors identified for adverse psychological outcomes included younger caregiver age, caregiver relationship to the patient, lower socioeconomic status, and female sex.; Conclusions: The prevalence of depression, anxiety, and PTSD varies greatly across studies of family caregivers of critically-ill patients. This finding highlights the need for more systematic investigations of psychological outcomes and the implementation of clinical interventions to prevent or reduce depression, anxiety, and PTSD in family caregivers of critically-ill patients.

Children who have parents with any kind of illness may become young carers who take a responsibility not expected of children for household tasks, or personal or emotional care for parents and siblings. So far, little is known about children in Sweden who are at risk of becoming young carers. The aim of this article is therefore to explore the extent and impact of children's caring activities as reported in a pilot study by a sample of children in Sweden. A number of international questionnaires measuring the amount of caring activities, impact of caring, quality of life, and psychological well‐being were translated and combined into a survey. The pilot survey was completed by 30 children 10–18 years of age. Also, when completing the survey, the children were interviewed concerning their experiences of caregiving. The participants report on a group level emotional symptoms such as fear and nervousness above the clinical cut‐off value. They also rate a lower level of caring compared with findings from the United Kingdom, but they report a higher degree of negative impact of caring than young carers in the United Kingdom. 

Family caregivers (FCs) of people with mental illness (PMI) experience caregiving-related distress. These challenges tend to be greater for Asian American families due to acculturative stress and structural barriers to services. However, little is known about caregiving-related experiences among FCs of PMI within a cultural context. By using an exploratory approach, we examined the experience of caregiver distress and the influence of cultural values on caregiving in European American and Chinese American FCs. In collaboration with community-based agencies, a combination of convenience and snowball sampling methods were used to recruit Chinese American and European American caregivers who co-reside with PMIs. Two focus groups with each ethnic group with 57 participants (30 Chinese and 27 European American) were conducted. Thematic analysis indicates that FCs experience intense emotions, health/mental health problems, and a negative impact on their personal/social lives. Whereas Chinese American FCs reported shame, lack of knowledge, and over-protectiveness of PMIs, European American FCs reported the need for advocacy on behalf of the PMI. Findings indicate a need for: 1) greater awareness of the caregiving experience on wellbeing of FCs; 2) an understanding of how cultural values may influence caregiver experience; and 3) developing culturally relevant prevention and intervention services that can support FCs from diverse cultural contexts.

Objective: Delirium superimposed on dementia (DSD) is common and associated with adverse outcomes. Current evidence indicates that some patients with dementia may recall delirium with distress for them and their caregivers. The aim of this study is to identify predictors of distress in informal caregivers of older patient with DSD.; Methods: A total of 33 caregivers of 33 patients with DSD were interviewed 3 days after the resolution of delirium (T0) and at 1-month follow-up (T1) to describe their level of distress related to the delirium episode. A linear regression was used to identify predictors of caregivers' distress at T0 and T1 defined a priori: age, sex, level of education, employment status, delirium subtypes, delirium severity, type and severity of dementia, and the time spent with the patient during the delirium episode.; Results: Caregivers were mostly female (81%), 59 (± 13.0) years old on average. The predictors of distress at T0 were the patient's severity of both dementia and delirium. Moderate dementia was associated with lower distress, whereas higher delirium severity was associated with greater distress. At 1-month follow-up, the predictors of distress were the age of caregiver and time spent in care; the distress level was higher when caregivers were older, and they spent less time with their loved one.; Conclusions: These preliminary findings underline the importance of providing continuous training and support for the caregivers, especially in coping strategies, in order to improve the care of DSD patients and prevent the caregivers' distress in long time period.

Background: Informal caregiving is associated with a number of negative effects on carers' physical and psychological well-being. The salutogenic theory argues that sense of coherence (SOC) is an important factor in psychological adjustment to stress. The main aim of this study was to systematically review current evidence on the association between SOC, burden and mental health outcomes in informal carers. Method: A systematic search was carried out up to September 2017 in the following databases: PubMed, CINAHL (EBSCO), PsychInfo (OVID) and Scopus. Studies were included if they evaluated the relationship between sense of coherence and subjective caregiver burden and/or mental health outcomes, specifically symptoms of depression and anxiety. Meta-analyses were performed and subgroup analyses were carried out to explore if methodological factors influenced findings. Results: Thirty-five studies were included in the meta-analysis, which provided 40 independent samples with 22 independent comparisons for subjective caregiver burden, 26 for symptoms of depression and 7 for symptoms of anxiety. Higher levels of SOC were associated with lower levels of subjective caregiver burden and better mental health outcomes. Publication bias did not change the estimate of the effect. Limitations: Most of the studies included in this review were cross-sectional. Conclusions: Findings suggest that SOC is an important determinant of carer well-being and may protect carers from high levels of psychological distress and caregiver burden.

Purpose: Pain is a multifactorial and subjective experience. Psychological and social factors can modulate it. This study analyzed whether and how prolonged cancer pain is related to the social-relational environment's characteristics. Specifically, we investigated whether the caregiver's emotional support, his/her compassion ability or, on the contrary, his/her personal distress, associates with the patient's pain level. Methods: The sample consisted of 38 cancer patients suffering from pain and 38 family caregivers. The patients completed the McGill Pain Questionnaire (MPQ), the Balanced Emotional Empathy Scale (BEES) referred to caregiver, and an interview concerning the patient's perception of the caregiver's compassion level. Caregivers completed the distress thermometer (DT), the BEES, and an interview assessment of their compassion level. Results: Caregiver's distress level correlated with patient's pain intensity (r = .389; p = .028). Exploratory linear regression confirmed this association (R2 = .151; F (1, 30) = 5.33; p = .028; β = 0.389). The number of problems reported by caregivers correlated with the patients' pain level (r = .375; p = .020), which was verified in a regression analysis (R2 = .140; F (1, 36) = 5.88; p = .020; β = 0.375). In particular, the caregiver's amount of emotional problems was related to patient's pain level (r = .427; p = .007); this result was reaffirmed in a regression (R2 = .182; F (1, 36) = 8.03; p = .007; β = 0.427). Conclusions: Our results show an association between social suffering, as indicated by the caregiver's emotional distress and the patient's physical pain. The results also highlight high distress levels and emotional problems among caregivers. The work emphasizes the need of a bio-psychosocial approach in managing cancer pain, along with the necessity to find effective interventions to fight emotional distress in family caregivers. The recovery of the caregivers' emotional resources could have beneficial implications on the patients' pain.

Using data from the China Health and Nutrition Survey (CHNS), this study investigated the impact of informal care on female caregivers' subjective well-being in China. We found that informal care significantly reduced the subjective well-being of female caregivers using the instrumental variable (IV) ordered probit model. Our results revealed that the care effect on subjective well-being was more significant for rural caregivers than for urban caregivers. The more hours or more recipients care was provided for, the greater the negative impact on subjective well-being. Based on these findings, we further identified the two channels of 'wealth' and 'health' through which informal care lowered subjective well-being. These results have implications for policy makers in overcoming the challenges involved in constructing and developing a supportive system of informal care in China. Highlights • Informal care significantly reduced the subjective well-being of female caregivers. • Care effects on subjective well-being were more significant for rural caregivers. • The more care given, the larger the negative impact on subjective well-being. • Caregiving reduced subjective well-being through lower wealth and worse health.

People with mental illness and their family caregivers often perceive public stigma, which may lead to stigma-related stress (or stigma stress). However, no instruments have been developed to measure this stress for family caregivers of people with mental illness. We modified an instrument that measures the stigma stress of people with mental illness (i.e., the cognitive appraisal of stigma as a stressor) and examined the psychometric properties of the scores of the newly developed instrument: the Family Stigma Stress Scale (FSSS). Primary family caregivers of people with mental illness in Southern Taiwan ( n = 300; mean age = 53.08 ± 13.80; 136 males) completed the FSSS. An exploratory factor analysis showed that the FSSS score had two factors; both factor scores had excellent internal consistency (α = .913 and .814) and adequate test-retest reliability ( r = .627 and .533; n = 197). Significant correlations between FSSS factor scores and other instruments supported its concurrent validity and the ability of the FSSS to differentiate between clinical characteristics, for example, having been previously hospitalized or not. The FSSS is a brief and effective measure of the stigma stress of family caregivers of people with mental illness.

Objective To develop new patient-reported outcome (PRO) measures to better understand feelings of loss in caregivers of individuals with traumatic brain injury (TBI). Design Cross-sectional survey study. Setting Three TBI Model Systems rehabilitation hospitals, an academic medical center, and a military medical treatment facility. Participants Caregivers (N=560) of civilians with TBI (n=344) or service members/veterans (SMVs) with TBI (n=216). Interventions Not applicable. Main Outcome Measures Traumatic Brain Injury Caregiver Quality of Life (TBI-CareQOL) Feelings of Loss-Self and TBI-CareQOL Feelings of Loss-Person with Traumatic Brain Injury item banks. Results While the initial exploratory and confirmatory factor analyses of the feelings of loss item pool (98 items) potentially supported a unidimensional set of items, further analysis indicated 2 different factors: Feelings of Loss-Self (43 items) and Feelings of Loss-Person with TBI (20 items). For Feelings of Loss-Self, an additional 13 items were deleted due to item-response theory-based item misfit; the remaining 30 items had good overall model fit (comparative fit index [CFI]=0.96, Tucker-Lewis index [TLI]=.96, root mean squared error of approximation [RMSEA]=.10). For Feelings of Loss-Other, 1 additional item was deleted due to an associated high correlated error modification index value; the final 19 items evidenced good overall model fit (CFI=0.97, TLI=.97, RMSEA=.095). The final item banks were developed to be administered as either a Computer Adaptive Test (CAT) or a short-form (SF). Clinical experts approved the content of the 6-item SFs of the 2 measures (3-week test-retest was r =.87 for Feelings of Loss-Self and r =.85 for Feelings of Loss-Person with TBI). Conclusions The findings from this study resulted in the development of 2 new PROs to assess feelings of loss in caregivers of individuals with TBI; TBI-CareQOL Feelings of Loss-Self and TBI-CareQOL Feelings of Loss-Person with TBI. Good psychometric properties were established and an SF was developed for ease of use in clinical situations. Additional research is needed to determine concurrent and predictive validity of these measures in the psychological treatment of those caring for persons with TBI. Highlights • Feelings of loss are common in caregivers of persons with traumatic brain injury. • Two new self-report measures of caregiver feelings of loss were developed. • These self-report measures can help identify feelings of entrapment in caregivers.

To a large extent caregivers perceive stigma through their social and community interactions by virtue of their association with persons with mental health problems. Meanwhile, evidence on their strategies for coping with potentially undesirable experiences linked with stigma is limited. Using a descriptive qualitative approach, the present study explored affiliate stigma among mental health professionals and family caregivers of persons with mental illness. Data, collected through one-on-one interviews with 10 mental health professionals and 10 family caregivers, were examined with content analysis. Findings revealed that, although stigma attached to mental illness was largely directed at sufferers and family caregivers, professionals sometimes had their fair share. To manage the negative impact of stigma, caregivers adopted various strategies including the use of realisation, tactical or planned ignoring, self-motivation, acceptance and religion. Implications of the findings necessitate the intensification of mental health education among the general populace, which must be targeted at demystifying mental illness.

Background: The literature describes the obstacles to sufficient care faced by people with dementia and their informal caregivers. Although factors influencing access and utilisation are frequently studied, the body of knowledge lacks an overview of aspects related to influence. The frequently used Behavioural Model of Health Care Use (BM) could be used to structure and explain these aspects. An adaptation of the BM emphasises psychosocial influences and appears to enrich the understanding of the use of long-term care for dementia. Methods: We conducted a scoping review with the aim of providing an overview of the aspects influencing the access to and utilisation of formal community care in dementia. Our search covered the PubMed, CINAHL, Social Science Citation Index and PsychInfo databases, as well as grey literature. Two researchers assessed the full texts for eligibility. A data extraction form was developed and tested. We analysed the main topics investigated by the studies and mapped and described the investigated psychosocial aspects according to the BM after narratively summarising the findings. We used the Mixed Method Appraisal Tool (MMAT) to critically appraise the included studies. Results: A total of 94 studies were included: n = 55 with quantitative designs, 35 with qualitative designs and four with mixed methods. The studies investigated different services, mainly focusing on health care services. One third of the studies provided information regarding the severity of dementia. The most frequently investigated main topics were ethnicity and attitudes towards services. Psychosocial aspects were frequently investigated, although few studies considered the perspectives of people with dementia. Approximately half of the studies reported a theoretical framework. The adapted BM facilitated the structuring and description of psychosocial aspects. However, this instrument did not address topics beyond the scope of psychosocial aspects, such as sociodemographic characteristics. Conclusions: The access to and utilisation of formal community care for dementia can only be partly explained by individual influencing aspects. Therefore, a theoretical framework would likely help to describe this complex subject. Our findings indicate that the psychosocial categories of the adapted BM enriched the original BM, and that people with dementia should more often be included in healthcare service research to ensure a better understanding of the barriers to accessing formal community care.

Background: The challenges of providing care for someone with Alzheimer's disease and related dementias (ADRD) have been associated with increased stress, poor mental and physical health, social isolation, and financial distress. More recently, caregiving has been associated with high rates of suicidal and homicidal ideation, but the research on these phenomena is limited. The present study analyzed a sample of blogs written by family caregivers of people with ADRD to explore thoughts of suicide and homicide expressed by these caregivers. Methods: Blogs written by self-identified informal caregivers of people with ADRD were identified using a systematic search method and data were analyzed using a qualitative thematic analysis. Results: Five themes related to thoughts of suicide and homicide by caregivers and people with ADRD were derived from the analysis: (1) end-of-life care; (2) thoughts of death and euthanasia by the person with ADRD; (3) surrogate decision making; (4) thoughts of suicide by the caregiver; and (5) thoughts of homicide and euthanasia by the caregiver. Conclusions: The results capture the reality of suicidal and homicidal thoughts among family caregivers of people with ADRD, supporting calls for more research on these complex topics and highlighting the need for changes to clinical practice to prevent thoughts from becoming behaviors or actions.

Objectives To describe the prevalence and trajectory of family caregivers' post-traumatic stress symptoms during the first year after a patient's admission to the intensive care unit and identify associations between family caregivers' background characteristics, hope and post-traumatic stress symptoms. Research methodology/designs Family caregivers of intensive care unit patients (n = 211) completed questionnaires at patient admission to the intensive care unit and thereafter at 1, 3, 6, and 12 months. Mixed-model analyses were performed. Setting Four intensive care units in a university hospital in Norway. Main outcome measures Impact of Event Scale—Revised and Herth Hope Index. Results On admission, 54% of family caregivers reported high post-traumatic stress symptom levels, which decreased during the first six months after patient discharge. Lower levels of hope, being younger, having more comorbidities and being on sick leave were associated with higher post-traumatic stress symptom levels. Being the parent of the patient was associated with decreased post-traumatic stress symptom levels. Conclusions Family caregivers of intensive care unit patients report high levels of post-traumatic stress symptoms. Higher levels of hope were associated with fewer post-traumatic stress symptoms.

Background The use of eCare technologies could address some of the challenges related to demographic changes and decreased care potential. However, little is known about eCare technologies' potential in relation to the psychological outcomes for informal carers. Research aim This study aims to provide an overview of the psychological outcomes of eCare technologies use for informal carers. Methodology A scoping study was done, where peer reviewed papers, written in English, investigating the use of eCare technologies in informal care and their psychological outcomes on informal carers, were included. Non-scientific studies, and studies which focused on psychological counselling or training through the Internet or phone, were excluded. The data search was conducted in Academic search complete, Scopus, ProQuest and Science Direct databases, from 12 October 2017 to 17 October 2017 and included 16 studies published since 2013. Results Six psychological outcomes were identified (peace of mind, reassurance, anxiety, depression, stress and burden). Out of those psychological outcomes, positive outcomes of eCare technologies use for informal carers were counted 37 times and negative outcomes only eight, suggesting a positive prevalent pattern of eCare technologies use for informal carers. Conclusion The outlined interplay between the positive and negative psychological outcomes suggest that the use of eCare technologies in informal care warrants further research, for instance whether the eCare technologies actually fulfil older people and informal carers' needs. 

Family caregivers of individuals with Alzheimer's disease and related dementias (ADRD) experience long-term mental health effects. Although caregivers who place relatives in long-term care (LTC) experience increased depression, anxiety, and chronic grief post-placement, interventions to improve caregivers' mental health have focused mainly on in-home care. Current researchers previously tested a group-based Chronic Grief Management Intervention (CGMI) with ADRD caregivers of individuals in LTC, with significant effects on caregiver mental health outcomes. In the current study, researchers adapted the CGMI for synchronous online video using Adobe® ConnectTM and iPads® (Chronic Grief Management—A Live-Streaming, Online Intervention [CGMI-V]). Specific aims were to test feasibility of digital delivery of the CGMI-V and explore caregivers' online group experience. Researchers assessed participants at baseline for sociodemographic information and at the end of the program with a four-item satisfaction survey and focus group. Digital delivery of the CGMI-V was feasible and caregiver satisfaction was high.

The physical and emotional toll of caring for someone who requires assistance moving, bathing, eating, grooming, and using the restroom increases if he or she is exhibiting signs of confusion or aggression. The literature is abundant with evidence that family caregivers are prone to anxiety and depression related to their duties. Additionally, burdened caregivers can put their patients at risk, as anxiety and depression can impact judgment. Caught in temporary situations that can seem endless, many caregivers experience mental health issues related to social isolation, financial concerns, and physical exhaustion. Here, Mathias explores the psychological impact of providing end-of-life care for a loved one and offers tools to assess and alleviate caregiver burden.

Background: Caregivers play a crucial role in the clinical evolution of patients with schizophrenia. In order to optimize their support, it is necessary to adjust it according to the phase and severity of the patient's illness. However, little interest has been given in the experience of family caregivers as a function on disease progression. Objectives: The objective of this study was to explore the experiences of family caregivers of patients with schizophrenia at different stages of the disease. Materials and methods: Twelve family caregivers of schizophrenia patients at different stages of the disease e.g. First Psychotic Episode (n = 4), Relapse (n = 4), and Remission (n = 4) participated in the study. Each caregiver was interviewed for about an hour by a psychologist (the same for all) using an interview guide. This interview guide included key themes highlighted in the literature: family burden, stigma, potential gains in caregiving, and ways to cope with the disease. After retranscription, the research interviews were analyzed with the Alceste method in order to help reading and systematizing the data. Results: The qualitative analysis allowed to emerge representations, emotions and practices characteristic of each group. Thus, the interviews with the caregivers of the group First Psychotic Episode were marked by the confrontation with the psychiatric institution. This world was frightening for them: firstly because it was foreign, but also because the representations they associated with schizophrenia were often marked by stigmatization. Hence the shock of the diagnostic announcement, the pain related to the awareness of the disorder of their close relative and the worry about a future that has just darkened. In the Relapse group, caregivers expressed despair and disappointment about the new hospitalization of their relative. Some also expressed anger, often directed against the mental health care system, especially when the subjects didn't feel heard in their request. Finally, the speech of the caregivers of the Remission group showed a reconstruction process: the family go back to its daily life, not “despite” but “with” the patient's disease and its consequences. A new balance had been established, including better relations with their close relative with schizophrenia. The caregivers’ speech in the latter group also included some key components of the recovery process, such as accepting the mental illness, seeing it positively, perceiving gains related to illness and caregiving, and hope for the future. The clinical implications of these results are discussed. In particular, ideas for improving the caregivers’ support in psychiatric emergency units are proposed. Conclusions: The data collected in this study provide valuable insights into the experiences of those who “live with” a close relative with schizophrenia. Moreover, these data indicate that families would also experience a subjective recovery process comparable to that described in the literature on schizophrenia. In addition to its exploratory aspect, the results of this study suggest supportive strategies adapted to the concerns of families at different stages of the evolution of the patient's illness. 

Objective In response to the well‐documented need for evidence‐based cancer caregiver support, we examined the feasibility of problem‐solving therapy for family caregivers of cancer patients receiving outpatient palliative care and investigated the impact of problem‐solving therapy on family caregivers' anxiety, depression, and quality of life. Methods We conducted a feasibility study of a structured problem‐solving therapy intervention delivered to family caregivers of cancer patients receiving outpatient palliative care from an academic health center in the Midwestern United States. Participants (N = 83) were randomly assigned to receive usual care or usual care plus a problem‐solving therapy intervention, which was delivered over three sessions via web‐based videoconferencing or telephone. Descriptive statistics were used to determine feasibility relative to recruitment, retention, and fidelity to core intervention components. Outcome data were analyzed using ordinary least squares multiple regression. Results Problem‐solving therapy for family caregivers of patients with cancer was found to be highly feasible in the outpatient palliative care setting. Caregivers who received problem‐solving therapy reported less anxiety than those who received only usual care (P = 0.03). No statistically significant differences were observed for caregiver depression (P = 0.07) or quality of life (P = 0.06). Conclusions Problem‐solving therapy is a feasible and promising approach to reducing cancer family caregivers' anxiety in the outpatient palliative care setting. Further testing in multiple sites is recommended.

Aims: Informal care, which is unpaid and often provided by family and friends, is the primary source of aged care in New Zealand. In addition to financial costs there are known psychological costs of being a carer, including poor mental health.; Methods: This research aimed to interview a group of New Zealand carers and describe their rates of depression and anxiety, their motivations for providing care, costs of care and their experience of aggression. Interviews used standardised questions and were conducted over the phone.; Results: Results are reported from interviews of 48 carers and suggest this group have elevated symptoms of depression and anxiety. Most of the carers are partners or children of the carees and likely do the caring out of love. Unpaid family carers experience low levels of aggression. Carers reported personal and social restriction, and physical and emotional health the most burdensome aspect of being a carer.; Conclusions: Carers of the elderly in New Zealand show elevated levels of distress. Higher levels of emotional support are needed for New Zealand carers. If the health system continues to rely on unpaid carers more should be done to support them.

Introduction: Caring for a family member with a long-term illness is a significant source of chronic stress that might significantly accelerate the cognitive ageing of informal caregivers. Nevertheless, the absence of a defined theoretical body of literature on the neuropsychology of this population makes it difficult to understand what the characteristic neuropsychological deficits of these caregivers are.; Aims: The main aim of this study is to carry out a systematic review of studies of cognitive deficits present in informal caregivers of people with several chronic pathologies, and analyse the effects of cognitive-behavioural interventions on caregivers' cognition.; Methods: The scientific literature was reviewed following the PRISMA quality criteria for reviews using the following digital databases: PubMEd, PsycINFO, and Dialnet.; Results: Identification of 2046 abstracts and retrieval of 211 full texts led to the inclusion of 38 papers. The studies showed heterogeneous results, but most of the cross-sectional studies reviewed that employed neuropsychological assessments concluded that informal caregivers reported a generalized cognitive deterioration, especially memory dysfunctions (i.e. learning verbal, visuospatial, and digit information). Moreover, they also presented low selective attention and capacity for inhibition, along with slow processing speed. Longitudinal studies confirmed that caregivers whose care situation was more prolonged showed a marked deterioration in their overall cognitive state, memory, processing speed, and vocabulary richness. However, although the patient's death does not seem to reverse the neuropsychological alterations in caregivers, cognitive-behavioural interventions that employ techniques to reduce stress levels, cognitive biases, and inadequate adaptation schemas seem to improve some of the aforementioned cognitive abilities.; Conclusions: Results from this synthesis and critical analysis of neuropsychological deficits in informal caregivers offer guidelines for diagnosing caregivers' cognitive status by including a test battery covering all the domains considered relevant. Finally, given the ability of cognitive behavioural interventions to improve cognition in caregivers, further studies on their long-term effects on caregivers are warranted. Chronic stress entails an acceleration of the cognitive ageing Cross-sectional studies concluded that informal caregivers reported a generalized cognitive deterioration Cognitive-behavioural interventions seem to improve cognitive abilities of caregivers.

Objective: To assess the association between perceived stigma and discrimination and caregiver strain, caregiver well-being, and patient community reintegration.; Design: A cross-sectional survey study of 564 informal caregivers of U.S. military service veterans of wars in Iraq and Afghanistan who experienced traumatic brain injuries or polytrauma (TBI/PT).; Setting: Care settings of community-dwelling former inpatients of U.S. Department of Veterans Affairs Polytrauma Rehabilitation Centers.; Participants: Caregivers of former inpatients (N=564), identified through next-of-kin records and subsequent nominations.; Interventions: Not applicable.; Main Outcome Measures: Caregiver strain, depression, anxiety, loneliness, and self-esteem; as well as care recipient community reintegration, a key aspect of TBI/PT rehabilitation.; Results: Family stigma was associated with strain, depression, anxiety, loneliness, lower self-esteem, and less community reintegration. Caregiver stigma-by-association was associated with strain, depression, anxiety, loneliness, and lower self-esteem. Care recipient stigma was associated with caregiver strain, depression, anxiety, loneliness, lower self-esteem, and less community reintegration.; Conclusions: Perceived stigma may be a substantial source of stress for caregivers of U.S. military veterans with TBI/PT, and may contribute to poor outcomes for the health of caregivers and for the community reintegration of the veterans for whom they provide care.

Background: Cancer and its treatment can result in psychological distress in both adults with cancer and in their family caregivers. This psychological distress acts as a significant adverse factor in patient-caregiver dyads. The study purposes included: (i) to assess anxiety and depression in adults with cancer and their family caregivers, and examine the dyadic relationship of anxiety and depression in patient-caregiver dyads; (ii) to investigate factors that may modify these relationships; and (iii) to explore the impact of anxiety and depression on patient-caregiver dyad quality of life (QOL).; Methods: This was a secondary analysis of a cross-sectional study. Participants consisted of 641 patient-caregiver dyads. Participants completed a survey assessing adults with cancer-related, family caregiver-related, and family-related variables using a demographic/clinical information sheet. In addition, anxiety/depression and QOL were assessed by using the Chinese version of the Hospital Anxiety and Depression Scale and SF-12 respectively. Data were analyzed by using descriptive statistics, Pearson correlations, subgroup analysis, and the Actor-Partner Interdependence Model.; Results: Nearly one-third of participants had experienced anxiety and depression. Adults with cancer and family caregivers experienced a similar degree of anxiety and depression. Correlations (r) of anxiety and depression between patient-caregiver dyads ranged from 0.25 to 0.32. Various factors influencing the anxiety and depression relationship between patient-caregiver dyads were identified, including adults with cancer-related (e.g., age, gender, marital status, level of being informed about the disease, different types of cancer and treatment), family caregiver-related (e.g., being the spouse of a patient, duration in their role as a family caregiver, and amount of time spent on caregiving each day), and family-related (family relationship pre- and post-cancer, financial burden on the family due to cancer treatment) variables. To some extent, both actor and partner effects were identified for anxiety and depression on the QOL of patient-caregiver dyads.; Conclusions: Study findings call attention to anxiety and depression, as well as related factors, in patient-caregiver dyads. The underlined essential components and focus of intervention, which will be developed to decrease psychological distress and improve QOL in patient-caregiver dyads, included individual characteristics of patient-caregiver dyads, family relationship, and anxiety and depression in their counterparts.;

During later life, older adults may be caregiving for people with late-onset mental health issues. The situation can alter family relationships and cause role transitions. This article offers three late-life mental health scenarios that require spouses or partners, adult children, and-or others to deal with an older adult family member's mood and behavior changes. Through case examples, the author explores geriatric depression, complicated grief, and provision of extended care for persons with severe mental illness, and highlights support for older care providers.

In this study, 16 family caregivers of patients with lymphoma were interviewed on their changing perceptions of hope. The changing process starts from diagnosis to the present treatment state. We found that the changing perception of hope can be divided into three stages: the stage of generalized hope focusing merely on treatment and passive hope focusing on harm-avoidance, the stage of specified hope and active hope aiming at comfort-seeking, and the stage of multifaceted hope. Family caregivers’ understanding of the past experience of and new information on the disease are the foundation of the perception of hope. The perception of hope in cancer patients’ family caregivers develops from “therapeutic hope” to “psychosocial hope,” shifting from “consequential hope” to “procedural hope.”

Objectives: To compare depression and psychological well-being between caregivers of schizophrenic patients and non-caregivers and to study the burden of caregiving as a relative risk for depression and psychological well-being.; Methods: This cross sectional comparative study was conducted at International Islamic university Islamabad from January to September 2017. Fifty informal caregivers of schizophrenic patients from 19 to 55 years of age were included in the study. The control group consisted of age and socio-economic status matched healthy volunteers who did not have any psychological or medical patient at home needing care and assistance. For measurement of study variables i.e., burden of caregiving, depression and psychological well-being, instruments used were Zarit Burden Interview (ZBI), The Beck Depression Inventory (BDI) and Warwick-Edinburgh Mental Well-Being Scale (WEMWBS) respectively.; Results: Results were analyzed using MANOVA followed by One-Way ANOVA. Findings indicated that informal caregivers of schizophrenia have greater depression and poor psychological well-being in comparison to the non-caregiver controls. Association of caregiving burden with psychological well-being and depression was calculated using Chi Square test and relative risk.; Conclusion: Caregiving adversely affects informal caregivers' mental health and wellbeing. Informal caregiving is a burden for the caregivers; health status of family members involved in caregiving should be routinely assessed to enhance their health-related quality of life.

Purpose: To explore the perspectives of people anticipated to be in their last year of life, family carers, volunteers and staff on the impacts of receiving a volunteer-provided befriending service. Patient participants received up to 12 weeks of a volunteer-provided befriending intervention. Typically, this involved one visit per week from a trained volunteer. Such services complement usual care and are hoped to enhance quality of life. Methods: Multiple case study design (n = 8). Cases were end-of-life befriending services in home and community settings including UK-based hospices (n = 6), an acute hospital (n = 1) and a charity providing support to those with substance abuse issues (n = 1). Data collection incorporated qualitative thematic interviews, observation and documentary analysis. Framework analysis facilitated within and across case pattern matching. Results: Eighty-four people participated across eight sites (cases), including patients (n = 23), carers (n = 3), volunteers (n = 24) and staff (n = 34). Interview data are reported here. Two main forms of input were described-'being there' and 'doing for'. 'Being there' encapsulated the importance of companionship and the relational dynamic between volunteer and patient. 'Doing for' described the process of meeting social needs such as being able to leave the house with the volunteer. These had impacts on wellbeing with people describing feeling less lonely, isolated, depressed and/or anxious. Conclusion: Impacts from volunteer befriending or neighbour services may be achieved through volunteers taking a more practical/goal-based orientation to their role and/or taking a more relational and emotional orientation. Training of volunteers must equip them to be aware of these differing elements of the role and sensitive to when they may create most impact.Trial Registration: ISRCTN12929812.

While involvement of family caregivers can play an important role in the recovery process of persons with serious mental illness (SMI), family caregivers often endure poor health and mental health issues due to caregiving-related distress. These challenges may be exacerbated for Vietnamese American families due to cultural values (e.g., familism and stigma). This qualitative exploratory study examined how Vietnamese American family caregivers of persons with SMI describe their caregiving experience. Using convenience and snowball sampling, the study recruited 21 participants who took part in two Vietnamese-language focus groups. Key findings of the study addressed three themes: (1) the influence of cultural and religious values on caregiving and mental health; (2) the negative impact of caregiving on caregivers’ wellbeing; and (3) the stigma attached to mental illness. The study offers useful insights to assist mental health practitioners in tailoring culturally appropriate and effective services for Vietnamese caregivers.

Background: Traumatic brain injury (TBI) will be the third largest killer by the year 2020 in the world. It creates the great amount of morbidity, disability, mortality, and reduces the psychosocial well-being of the patients and their caregivers. Hence, the current paper aimed to explore the psychosocial distress and caregivers' concerns in emergency and trauma care (ETC) setting. Methodology: This study adopted qualitative research design. All caregivers of TBI survivors were considered as a universe of the study. A total of 50 caregivers were recruited, and the predesigned questionnaire was administered. Depression, anxiety, stress scale was used to identify the caregivers' depression, stress, and anxiety. The simple thematic analysis was used to derive the themes from the verbatim data. Data were analyzed using SPSS version 21.0 (SPSS South Asia Pvt.Ltd, Bengaluru, Karnataka, India). Results: In the quantitative analysis, caregivers' mean age was found to be 45 (mean = 45.00 ± 13.83) years. Caregivers had experienced mild depression (13.36 ± 3.07), moderate anxiety (13.70 ± 3.03), and minimum stress (13.66 ± 2.98) levels. Qualitative results identified the following themes: difficulty in accessing timely care, uncertainty about the prognosis and future, family concerns and financial constraints, personal feelings and personal needs, and supportive care. Chi-square test revealed that there was no significant association between gender and depression (χ2 = 2.381 P < 0.12), anxiety (χ2 = 0.01 P < 0.92), and stress (χ2 = 0.235 P < 0.61) levels of caregivers. Conclusion: To accomplish, providing psychosocial care in ETC setting, the role of psychiatric social workers is pivotal. 

Background Family carers of people living and dying with dementia experience grief. The prevalence, predictors and associated factors of grief in this population have been identified, and psychosocial interventions to decrease grief symptoms have been implemented. However, the effect of psychosocial interventions on family carers’ grief, loss or bereavement has not been examined. Objective To synthesize the existing evidence regarding the impact of psychosocial interventions to assist adjustment to grief, pre- and post-bereavement, for family carers of people with dementia. Inclusion criteria Types of participants Family carers of older persons with dementia (>65 years). Types of interventions Psychosocial interventions in health and social care facilities, and community settings designed to assist family carers adjust to grief during the dementia trajectory and/or following death. Comparisons No treatment, standard care or treatment as usual, or an alternative intervention. Types of studies Experimental and epidemiological study designs. Outcomes Grief in family carers including anticipatory, complicated and prolonged grief disorder measured with validated instruments. Search strategy A three-step strategy sought to identify both published and unpublished studies from 1995. Methodological quality Assessed by two independent reviewers using standardized critical appraisal tools from the Joanna Briggs Institute Meta Analysis of Statistics Assessment and Review Instrument (JBI-MAStARI). Data extraction The standardized data extraction tool from JBI-MAStARI was used by two reviewers independently. Data synthesis Statistical pooling of results was not possible due to the heterogeneity of the interventions and the outcome measures. Results Data were extracted from three studies. Study designs were a randomized controlled trial; a pre-test, multiple posttest quasi-experimental; and a single group, repeated measures. The interventions were multi-component, had durations of nine to 26 weeks and were delivered while care recipients were alive. All studies were undertaken in the United States. There were 327 family carers, of which 197 received a psychosocial intervention. Family carers were predominantly female (84.7%), Caucasian (73.4%) and caring for their spouse (44.3%). All care recipients had dementia; 68.5% had Alzheimer’s disease. Two studies measured anticipatory grief, and the third study reported normal and complicated grief. Moderate benefits to anticipatory grief were evident upon completion of the “Easing the Way” intervention (effect size -0.43, P = 0.03). After controlling for research design and control variables, for every hour increase in the interventions focusing on family carers’ cognitive skills, there were associated decreases in carers’ normal grief (parameter estimate [PE]= -0.81, P = 0.02) and complicated grief (PE=-0.87, P = 0.03). For every hour increase in the interventions focusing on carer behavior, there was an associated decrease in carers’ complicated grief (PE = -1.32, P = 0.04). For every hour increase in the interventions focusing on care recipient behavior, there was an associated decrease in carers’ complicated grief (PE = -2.91, P = 0.04). Conclusion There is little evidence upon which to base practice with regard to interventions to reduce any aspects of grief. Findings suggest that different pre-death interventions might be warranted depending upon a family carer’s unique clinical presentation and combination of risk factors. Cognitive skills training provided while the care recipient is alive may positively impact normal and complicated grief following the death of the care recipient. When the cognitive skills training is provided in conjunction with behaviorally oriented interventions that improve the wellbeing of the carer and care recipient, carers’ complicated grief symptoms may be reduced. 

Background Intensive care nurses may have an important role in empowering families by providing psychological support and fulfilling the family's pivotal need for information. Aim To determine whether ‘education of families by tab’ about the patient’s condition was more associated with improved anxiety, stress, and depression levels than the ‘education of families by routine’. Research design A randomized control trial of 74 main family caregivers (intervention: 39; control: 35). Setting An adult intensive care unit. Main outcome measures Depression Anxiety Stress Scale, and Communication and Physical Comfort Scale. Results Although information need satisfaction was not significantly different between intervention and control groups, the former reported significantly better depression score on Depression Anxiety Stress Scale comparing to the control group (p<0.01;η2=0.09) with a medium effect size. Reduction of anxiety in the intervention group were clinically significant. Conclusion The results suggest that use of ‘education of family by tab’ is promising for intensive care nurses to provide psychological support for family members. More studies are needed to investigate this aspect of family care for better psychological support and information need satisfaction that contributes to the evidence-based practice of intensive care nursing.

Purpose/Objectives: To describe and examine the relationship between caregiver burden and the affective disorders anxiety and depression in caregivers of patients with brain metastases. Design: Cross-sectional, descriptive, correlational. Setting: Moores Cancer Center at the University of California, San Diego.Sample: 56 family caregivers of patients with brain metastases from solid tumors at other primary sites. Methods: Self-administered survey. Main Research Variables: Caregiver burden, anxiety, and depression. Findings: With the exception of caregiver esteem, no statistically significant relationships were noted between impact on schedule, a dimension of caregiver burden, and screening positive for affective disorders. Conclusions: Findings from this study support previous reports indicating that the odds of having anxiety and depressive symptoms are greater in family caregivers who report higher levels of caregiver burden. Implications for Nursing: The identification and management of caregiver burden are important considerations for a comprehensive cancer care program. Addressing the needs of the cancer caregiver, who is at heightened risk for various psychological, physical, financial, and social problems, is increasingly vital.

Background There is a lack of good-quality instruments measuring stigma experienced by family members of stigmatised people. Aims To develop a self-report measure of stigma among families of people with intellectual and developmental disabilities and examine associations between family stigma and other variables. Method The new Family Stigma Instrument (FAMSI) was tested with 407 family carers, 53% of whose offspring had an autism spectrum disorder in addition to intellectual disability. They also completed measures of subjective well-being, caregiver burden, self-esteem and social support. Results The FAMSI yielded a five-factor structure and had good reliability. Perceived family stigma, caregiver burden and subjective well-being were the strongest predictors of family stigma. Conclusions This instrument can advance our understanding of the impact of stigma on family members. It can also help us understand sociodemographic, psychosocial and contextual variables of both the carer and cared for person that may influence family members' experiences. 

Backgrounds Breast cancer is a global threat to all women, especially those having close relatives with breast cancer. Women who were caregivers to relatives with breast cancer are more vulnerable to stress caused by the perception of heightened risk of cancer. Because health measures and breast health are affected by cultural beliefs and social status, information about breast cancer should consider the cultural beliefs and values of the society. Objectives This study explored the experiences of Iranian women who were caregivers to relatives with breast cancer. Methods In this qualitative content analysis study, 21 female caregivers of breast cancer patients were chosen by purposive sampling. Data were collected through interviews and analyzed using content analysis. Results Data analysis developed 3 categories: perception of the concept of risk, changing views about femininity, and management of perceived threat. Perception of the risk of breast cancer increased in caregivers, and they tried to manage the perceived threat. They considered the breast to be an important part of women's lives, and breast cancer in relatives changed their view of femininity. Conclusion Understanding the experiences of breast cancer family caregivers in different cultures can help in planning, counseling, and effective intervention.

With an ageing population, there are increasing numbers of experienced family carers (FCs) who could provide peer support to newer carers in a similar care situation. The aims of this paper are to: (i) use a cross-sectional study design to compare characteristics of volunteers and recipients of a peer support programme for FCs of people with dementia, in terms of demographic background, social networks and psychological well-being; and (ii) use a longitudinal study design to explore the overall impact of the programme on the volunteers in terms of psychological well-being. Data were collected from programmes run in Norfolk, Northamptonshire, Berkshire and four London boroughs between October 2009 and March 2013. The volunteer role entailed empathic listening and encouragement over a 10-month period. Both carer support volunteers (N = 87) and recipient FCs (N = 109) provided baseline demographic information. Data on social networks, personal growth, self-efficacy, service use and well-being (SF-12; EuroQol Visual Analogue Scale; Hospital Anxiety and Depression Scale; Control, Autonomy, Self-Realisation, Pleasure-19) were collected prior to the start of the intervention (N = 43) and at either 3- to 5 month or 10 month follow-up (N = 21). Volunteers were more likely than recipients of support to be female and to have cared for a parent/grandparent rather than spouse. Volunteers were also more psychologically well than support recipients in terms of personal growth, depression and perceived well-being. The longitudinal analysis identified small but significant declines in personal growth and autonomy and a positive correlation between the volunteers' duration of involvement and perceived well-being. These findings suggest that carers who volunteer for emotional support roles are resilient and are at little psychological risk from volunteering. 

Background: The rapid increase in the number of elderly family caregivers underlines the need for new support systems. Internet-delivered psychological interventions are a potential approach, as they are easy to access for family caregivers who are often homebound with their care recipient. This study examines the relative effectiveness of an internet-based acceptance and commitment therapy (ACT) intervention or a standardized institutional rehabilitation program, first, in reducing depressive symptoms, and second, in improving the well-being and quality of life of elderly family caregivers compared to a control group receiving support from voluntary family caregiver associations. Methods: 156 family caregivers aged 60 or more are studied in a quasi-experimental study design that compares three groups of family caregivers (Group 1; n = 65: a guided 12-week web-based intervention; Group 2, n = 52: a standardized institutional rehabilitation program in a rehabilitation center; Group 3, n = 39: support provided by voluntary caregiver associations). Data collection is performed at three time-points: pre-measurement and at 4 months and 10 months thereafter. Caregivers’ depressive symptoms as a primary outcome, and perceived burden, anxiety, quality of life, sense of coherence, psychological flexibility, thought suppression, and personality as secondary outcomes are measured using validated self-report questionnaires. Physical performance and user experiences are also investigated. Between-group differences in the effects of the interventions are examined using multiple-group modeling techniques, and effect-size calculations. Discussion: The study will compare the effectiveness of a novel web-based program in reducing depressive symptoms and improving the psychological well-being of elderly family caregivers, or a standardized institutional rehabilitation program representing usual care and a control group receiving support offered by voluntary caregiver associations. The results will expand the knowledge base of clinicians and provide evidence on effective strategies to improve the mental health and overall quality of life of elderly family caregivers. Trial registration: The study was retrospectively registered in www.clinicaltrials.gov (ClinicalTrials.gov Identifier: NCT03391596 on January 4, 2018.

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Approximately 42.1 million family caregivers provided care to an adult with limitations in daily activities at any given point in time in the US in 2009 (Feinberg et al., 2011).  ... Tailored online interventions that incorporate behavior change techniques such as stress management can have positive effects on caregivers' psychological well-being (Guay et al., 2017). Web-based mindfulness interventions (MBI)2 show promising results with beneficial health effects for healthy and clinical samples (de Vibe et al., 2012). A feasibility study and randomized controlled trial of the current online MBI showed positive significant results for families living with MI with enhanced levels of mindfulness and self-compassion, and decreased levels of caregiver burden and perceived stress (Stjernswärd and Hansson, 2016a; Stjernswärd and Hansson, 2017), combined with good usability and subjective value when using the program (Stjernswärd and Hansson, 2016b). Usability refers to the extent to which a specific user can use a specific product to reach specific goals, with purposefulness, effectiveness, and satisfaction, in a given context (ISO, 1998). Ease of access and flexibility of use were strong motivators for use (Stjernswärd and Hansson, 2016b). More studies are called for to verify the intervention's effectiveness for extended groups of caregivers. ...The current effectiveness study was designed as a randomized controlled trial with an experimental group and a wait-list control group (WLC), with measurements at baseline (T1), post intervention (T2) and at a 3-month follow-up (T3) on primary and secondary outcomes, and usability, in order to explore the effectiveness of the web-based mindfulness program in supporting caregivers to cope with their situation. 

Objective: Informal caregivers often experience psychological distress due to the changing functioning of the person with dementia they care for. Improved understanding of the person with dementia reduces psychological distress. To enhance understanding and empathy in caregivers, an innovative technology virtual reality intervention Through the D'mentia Lens (TDL) was developed to experience dementia, consisting of a virtual reality simulation movie and e-course. A pilot study of TDL was conducted. Methods: A pre-test–post-test design was used. Informal caregivers filled out questionnaires assessing person-centeredness, empathy, perceived pressure from informal care, perceived competence and quality of the relationship. At post-test, additional questions about TDL's feasibility were asked. Results: Thirty-five caregivers completed the pre-test and post-test. Most participants were satisfied with TDL and stated that TDL gave more insight in the perception of the person with dementia. The simulation movie was graded 8.03 out of 10 and the e-course 7.66. Participants significantly improved in empathy, confidence in caring for the person with dementia, and positive interactions with the person with dementia. Conclusion: TDL is feasible for informal caregivers and seems to lead to understanding of and insight in the experience of people with dementia. Therefore, TDL could support informal caregivers in their caregiving role.

Objectives: Qualitative research has suggested that spousal experiences of discontinuity in their relationship with a person who has dementia (i.e. the relationship is experienced as radically changed) may contribute to heightened feelings of burden, entrapment, isolation, guilt and intolerance of behaviours that challenge. By contrast, continuity in the relationship may contribute to a greater sense of achievement and gratification from providing care. The present study served as a quantitative test of these suggestions. Method: A convenience sample of 71 spouses of people with dementia completed three questionnaires - the Zarit Burden Interview (ZBI), the Positive Aspects of Caregiving measure (PAC) and the Birmingham Relationship Continuity Measure (BRCM). Results: In accordance with the hypotheses, the experience of greater relationship continuity (higher BRCM scores) was correlated with fewer negative emotional reactions to caregiving (lower ZBI scores; rho = −.795) and more positive emotional reactions (higher PAC scores; rho = .764). Conclusions: The study provided some quantitative support for suggestions arising from qualitative research about how perceptions of continuity/discontinuity in the relationship may impact on the caregiving spouse's emotional well-being. Helping couples to maintain a sense of continuity and couplehood may assist their emotional adjustment to dementia.

Objectives: To quantitatively review the literature comparing depressed mood, anxiety and psychological distress in caregivers (CGs) of older adults with Alzheimer's disease (AD) with non-caregivers (NCGs) Methods: Eighteen independent studies comparing AD CGs (N = 2378) with NCGs (N = 70,035) were evaluated in accordance with the Strengthening the Reporting of Observational Studies in Epidemiology (STROBE) guidelines. Standardised mean differences (Hedges’ g) with associated 95% confidence intervals and p-values were calculated using a random-effects model. Results: Studies generally conformed to STROBE criteria in terms of their methodological and procedural detail, although data management issues that may contribute to methodological bias were identified. Pooled effect estimates revealed medium to large group differences in depression (gw = 1.01 [CI: 0.73, 1.29] p < 0.01) and anxiety (gw = 0.64 [CI: 0.39, 0.89] p < 0.01): AD caregivers reported higher symptom severity. Gender was a significant moderator: female caregivers experienced poor self-reported mood (gw = 1.58 [CI: 1.11, 2.05], p< 0.01), although this analysis was limited in power given the small number of contributing studies. Discussion: Caregivers of patients with AD experience poor mental health in comparison to the general population, with female caregivers being disproportionately affected. Further exploration of the psychosocial variables that contribute to these group differences is needed to inform effective support services and, in turn, help caregivers manage the emotional demands of AD.

Objective: The aim of this study was to update the literature on interventions for carers of people with dementia published between 2006 and 2016 and evaluate the efficacy of psychoeducational programs and psychotherapeutic interventions on key mental health outcomes (depression, anxiety, burden, and quality of life). Methods: A meta-analysis was carried out of randomized controlled trials of carer interventions using MEDLINE, PsycINFO, Scopus, and Cochrane Central Register of Controlled Trials. Results: The majority of studies were conducted in Western and Southern Europe or the United States and recruited carers of people with Alzheimer's disease or dementia grouped as a whole. The most commonly used outcome measures were depression and burden across studies. The updated evidence suggested that psychoeducation-skill building interventions delivered face-to-face can better impact on burden. Psychotherapeutic interventions underpinned by Cognitive Behavior Therapy (CBT) models demonstrated strong empirical support for treating anxiety and depression and these effects were not affected by the mode of delivery (i.e. face-to-face vs. technology). A modern CBT approach, Acceptance and Commitment Therapy (ACT), seemed to be particularly beneficial for carers experiencing high levels of anxiety. Conclusions: Future research needs to explore the efficacy of interventions on multiple clinical outcomes and which combination of interventions (components) would have the most significant effects when using CBT. The generalization of treatment effects in different countries and carers of different types of dementia also need to be addressed. More research is needed to test the efficacy of modern forms of CBT, such as ACT.

A caregiver’s attachment history with their parents may affect the thoughts, feelings, and behaviour they now have as they care for a parent with dementia. Participants were 77 daughters of a parent with dementia. The nature of participant conscious episodic memories of their parental figures and unconscious procedural knowledge of caregiving processes (secure base script knowledge) were identified as two aspects of the caregiver’s relationship history that may impact their involvement in care, relationship conflict, critical attitudes, and strain. The authors findings indicated that the nature of episodic memories of the caregiver relationship history with parental figures were significantly associated with stress and criticism of their parent. Greater unconscious procedural knowledge of the secure base script was associated with caregiver report of less conflict and less involvement in the caregiving tasks. Potential clinical implications of this pattern are also discussed.

Objectives: Little is known regarding the effect that caring for an individual with Mild Cognitive Impairment (MCI) has on health-related quality of life (HRQOL). The authors sought to identify the most important aspects of HRQOL related to caring for an individual with MCI. Methods: Six focus groups were conducted with caregivers of individuals with MCI (n = 32). Qualitative frequency analysis was used to analyze the data. Results: Findings indicated that caregivers most frequently discussed social health, including changes in social roles and an increased need for social support (51.2% of the total discussion). This was followed by mental health concerns (37.9%) which centred on anger/frustration, and a need for patience in the caregiving role, as well as caregiver-specific anxiety. Other topics included physical health (10.0%; including the impact that stress and burden have on medical heath), and caregivers’ cognitive health (0.9%; including memory problems in relation to caregiver strain, sleep disruption, and cognitive fatigue). Conclusions: Findings illustrate the multiple domains of HRQOL that are affected in individuals providing care for someone with MCI. Moreover, the findings highlight the need for extending support services to MCI caregivers, a group that is typically not offered support services due to the ‘less severe’ nature of an MCI diagnosis.

Family carers are a crucial resource in the care and support of people with dementia, but their motivations for caring can make the difference between success and failure. The author discusses his study of support workers' views on the way motivations can change and undermine carers' health.

Purpose: The aim of this study was to explore the impact of extended cancer survival on broader aspects of life and wellbeing such as occupational, financial and family life for patients with advanced cancer and their nominated informal caregivers. Methods: In-depth qualitative interviews were transcribed verbatim. A thematic framework was developed from an initial process of open coding and tested iteratively as new data were collected. Results: Twenty-four patient-caregiver dyads with advanced ovarian (9), melanoma (9) or lung cancer (6). Patients were aged 39–84 (median 62 years) and caregivers 19–85 (median 54 years). Caregivers were the partners/spouses (15), children (5), siblings (2) and friends (2) of patients. One particular theme, ‘uncertainty’, encompassed many issues such as planning for the future, providing for one’s family, employment and finances. Uncertainties were related to the timescale and trajectory of the disease and lack of control or ability to make plans. There were marked age effects. Accounts from within the same dyad often differed and patients and caregivers rarely discussed concerns with each other. Conclusions: Both patients and their informal caregivers were challenged by the uncertainties around living with advanced cancer and the lack of a defined trajectory. This impacted many diverse areas of life. Although distressing, dyads seldom discussed these concerns with each other. Implications for Cancer Survivors: Uncertainty is a recurrent issue for cancer survivors and their families impacting broad aspects of their lives and their ability to move forward; however, patients and caregivers in this study rarely discussed these concerns together. Uncertainty should be discussed periodically, together, and healthcare professionals could facilitate these discussions. The use of one or more ‘trigger questions’ in clinic appointments may provide an opportunity to start these dialogues. 

Objective: The present study investigated subjective wellbeing amongst informal caregivers of people with wounds. Although under-investigated in the wound care literature, prior research indicates that informal caregiving results in a series of poorer outcomes for the caregiver. Methods: A convenience sample of 57 caregivers (16 male, 41 female, 19-84 years old), was recruited from public outpatient facilities. Participants completed measures of caregiving satisfaction, and subjective wellbeing, in addition to characteristics about themselves and the care provided. Results: The informal caregivers of people with wounds scored significantly lower on a measure of subjective wellbeing than the Australian population to a large effect (d = 1.11). Negative associations were identified between sleep and subjective wellbeing, while positive associations were found between caregiving satisfaction, and relationship quality with subjective wellbeing. Discussion: Caregivers displayed lower subjective wellbeing than the general population. Subjective wellbeing was related to sleep, satisfaction, and relationship quality. Future research should compare outcomes of the caregivers of people with different forms of wounds, and should determine if correlating stressors and mediators are causal to wellbeing.

Objectives: Illness representations shape responses to illness experienced by the self or by others. The illness representations held by family members of those with long-term conditions such as dementia influence their understanding of what is happening to the person and how they respond and provide support. The aim of this study is to explore components of illness representations (label, cause, control and timeline) in caregivers of people with dementia. Method: This was an exploratory study; the data reported came from the Memory Impairment and Dementia Awareness Study (MIDAS). Data from semi-structured interviews with 50 caregivers of people with dementia were analysed using content analysis. Results: The majority of caregivers gave accounts that appeared to endorse a medical/diagnostic label, although many used different terms interchangeably. Caregivers differentiated between direct causes and contributory factors, but the predominant explanation was that dementia had a biological cause. Other perceived causes were hereditary factors, ageing, lifestyle, life events and environmental factors. A limited number of caregivers were able to identify things that people with dementia could do to help manage the condition, while others thought nothing could be done. There were varying views about the efficacy of medication. In terms of timeline, there was considerable uncertainty about how dementia would progress over time. Conclusion: The extent of uncertainty about the cause, timeline and controllability of dementia indicated that caregivers need information on these areas. Tailored information and support taking account of caregivers' existing representations may be most beneficial.

Objectives: Gratitude is widely perceived as a key factor to psychological well-being by different cultures and religions. The relationship between gratitude and coping in the context of familial dementia caregiving has yet to be investigated. Design: This study is the first to examine the associations among gratitude, coping strategies, psychological resources and psychological distress using a structural equation modelling approach. Results: Findings with 101 Chinese familial caregivers of persons with dementia (mean age = 57.6, range = 40–76; 82% women) showed that gratitude was related to the greater use of emotion-focused coping (positive reframing, acceptance, humour, emotional social support seeking, religious coping) and psychological resources (caregiving competence and social support). Psychological resources and emotion-focused coping in turn explained the association between gratitude and lower levels of psychological distress (caregiving burden and depressive symptoms). Conclusion: The present results indicate the beneficial role of gratitude on coping with caregiving distress and provide empirical foundation for incorporating gratitude in future psychological interventions for caregivers.

As the population ages, there is a growing need for families and friends to support frail older adults in their home. Although many family caregivers report feeling satisfied with their caring role, a growing number of caregivers also feel physically, emotionally, and financially drained by the experience. The purpose of this literature review is to explore the experience of compassion fatigue (CF) among family caregivers, and to suggest strategies to combat this possible consequence of caregiving. A literature search was conducted using the Cumulative Index to Nursing and Allied Health Literature (CINAHL), PubMed, and ProQuest databases. In total, six English peer reviewed articles related to CF and family caregiving were identified for review. Although there are few studies available on this topic, the literature suggests that CF is a concern for this group of caregivers. Caregivers were found to be consumed by a sense of responsibility to support their relatives, and they showed signs of hopelessness, guilt, resentment, and social isolation. To combat CF, we advocate implementing a systems management approach, which would bring together all healthcare stakeholders to support family caregivers and those they care for.

Background: Family carers provide vital support for patients towards end-of-life, but caregiving has considerable impact on carers’ own health. The scale of this problem is unknown, as previous research has involved unrepresentative samples or failed to fully capture caregiving close to death. Aim: To quantify level of psychological morbidity and general health among a census sample of carers of people with cancer at end-of-life, compared to population reference data. Design: National 4-month post-bereavement postal census survey of family carers of people who died from cancer, retrospectively measuring carers’ psychological health (General Health Questionnaire-12) and general health (EuroQoL EQ-Visual Analogue Scale) during the patient’s last 3 months of life. Participants: N = 1504 (28.5%) of all 5271 people who registered the death of a relative from cancer in England during 2 weeks in 2015 compared with data from the Health Survey for England 2014 (N = 6477–6790). Results: Psychological morbidity at clinically significant levels (General Health Questionnaire-12 ⩾4) was substantially higher among carers than the general population (83% vs 15%), with prevalence five to seven times higher across all age groups. Overall, carers’ general health scores were lower than population scores, median 75 (interquartile range, 50–80) versus 80 (interquartile range, 70–90), but differences were more marked at younger ages. Female carers had worse psychological morbidity and general health than male carers. Conclusion: Levels of psychological morbidity among family carers during end-of-life caregiving are far higher than indicated by previous research, indicating a substantial public health problem. Consistent assessment and support for carers to prevent breakdown in caregiving may produce cost savings in long term.

Aim To longitudinally describe stroke caregivers’ quality of life, anxiety, depression and burden and to identify predictors of stroke caregivers’ quality of life, anxiety, depression and burden. Background Caregivers have a key role in stroke survivor care and the first year of caregiving is the most challenging. To give tailored interventions, it is important to capture changes and identify predictors of caregiver quality of life, anxiety, depression and burden during the first year. Design A 12‐month longitudinal study. Data were collected between June 2013–May 2016. Methods Changes in stroke caregiver quality of life, anxiety and depression and burden and their predictors were identified using linear mixed‐effects models. Results The caregivers (N = 244) were 53 years old and mostly female. Caregiver quality of life did not change significantly over the 12 months, anxiety and depression decreased up to 9 months and caregiver burden decreased from baseline to 3 months, then increased up to 9 months. Higher caregiver quality of life was predicted by caregiver younger age, higher education, living with a stroke survivor, survivor older age and higher physical functioning; higher anxiety and depression were predicted by older caregiver age and younger survivor age; higher burden was predicted by caregiver male gender, the caregiver not living with survivor and survivor lower physical functioning. Conclusion The first 9 months of caregiving are particularly problematic for caregivers. The trajectories of the above variables and their predictors may be useful for policy makers, clinicians, investigators and educators to give better care to stroke caregivers and their survivors.