Long-Distance Family Caregivers' Perceptions of Burden and Strain Scales Developed for Proximate Family Caregivers.

Employed family caregivers are affected by job demands, which can affect quality of care provided to recipients. However, it is important to understand how job demands and the ability to reconcile employment and caregiving influence family caregivers' quality of life. The aim of this study was to examine the extent to which job demands influenced quality of life for employed family caregivers of older adults with dementia in Taiwan. This cross-sectional study analyzed secondary data from self-completed questionnaires collected from December 2010 to December 2011. Participants were 214 employed family caregivers of older adults with dementia in Taiwan. How job demands and caregiving influence quality of life was determined with hierarchical multiple regression analysis. Job demands included working hours, workplace inflexibility, work inefficiency, and difficulty in reconciling work and family caregiving. After controlling for demographics, caregiving resources, and caregiving role demands, employed family caregivers of older adults with dementia with fewer working hours and greater work efficiency reported significantly better quality of life (β = -.130, p = .049; β = -.263, p < .001) than those with more working hours and less work efficiency. Employed family caregivers of older adults with dementia who had more working hours and less work efficiency had a greater likelihood of poorer quality of life than other employed family caregivers. Clinicians could use these findings to identify groups at high risk for poor quality of life. We suggest developing policies and interventions to help employed family caregivers of older adults with dementia to reduce working hours and improve work efficiency in order to improve quality of life, which could also improve quality of care for recipients.

Family caregivers of adults with Down syndrome often provide life-long caregiving support for their loved one. Long-term caregiving can impact caregivers' health and well-being, yet their experiences and support needs are underexplored. Semi-structured interviews were conducted with caregivers of adults with Down syndrome to understand their caregiving experiences and perceived caregiver support needs. Transcripts of the recorded interviews were coded and analysed thematically. Seventeen family caregivers (94.1% female, Mage = 58.8 years) of adults with Down syndrome completed the interviews. We identified four major themes: constancy of caregiving, future planning, significance of social supports and positive joys and rhythms. Our findings demonstrate that caregiving responsibilities can feel constant and unceasing, yet consistent routines and positive appraisal help ease the burden. Family and friends support thriving, but trusted options for transportation services, life transition planning and respite care are needed. Targeting these support needs may improve caregiver well-being.

Introduction: One of India’s most valuable resources is its young people, and this generation needs to be nurtured for the bright future of the nation. However, when the young generation is affected by chronic mental disorders, families find it difficult to take care of them and are burdened with the responsibility for several years. Aim: To explore the lived experiences of Family Caregivers (FCGs) of young adults with chronic mental disorders. Materials and Methods: This qualitative study was conducted at the selected mental inpatient and outpatient Department of a selected mental health facility in Urban Bangaluru, Karnataka, India from April 2021 to December 2021. The authors used a phenomenological qualitative study to explore the lived experiences of family caregivers of young adults with chronic mental disorders {mania, depression, Bipolar Affective Disorder (BPAD), schizophrenia} aged between 18-40 years. The Family Caregivers of young adults undergoing treatment were approached for written informed consent and recruited through purposive sampling. Data were collected using face-to-face, indepth, semi-structured interviews. Each interview lasted around 45 minutes to one hour, and data saturation was achieved with 15 samples. Interviews were conducted over a period of nine months. The audio-recorded interviews were transcribed, interpreted, and investigated using Colaizzi’s data analysis framework. Baseline variables were analysed using descriptive statistics. Results: In the present, the family caregivers’ ages ranged from 28 to 60 years, with the majority (67%) being females and employed. One of the family members was affected by a mental disorder. A rehabilitation facility was unavailable to the majority (67%) of them near their residence. Regarding the young adults with chronic mental disorders, the majority (74%) were unemployed and diagnosed with affective disorders. The maximum duration of illness was 20 years, with onset typically at the age of 17-21 years. From the analysis, six main themes and 36 subthemes emerged. The main themes were as follows: family caregivers experience difficulty in identifying the responsible person and support system, providing physical care, tackling emergencies, problems with medication and early identification of relapse, problems with indecent behaviour, and knowledge deficit related to mental disorders and their management. Conclusion: The study concludes that family caregivers of young adults with chronic mental disorders experience various psychosocial and economic issues and problems while caring for a young adult with chronic mental disorders. The knowledge generated from the present study can be utilised by mental health professionals to plan home-based care strategies to improve the quality of life and reduce the burden of care for FCGs.

Introduction: The continuous increased in the ageing population suffering from chronic diseases with difficulty in performing activities of daily livings (ADLs) and instrumental activities of daily livings (IADLs) increasing their needs of care. Because of limited health facilities and support; the family caregivers may experience burden. Objective: To identify factors associated with caregiving burden of family caregivers of older adults with disability. Methods: Descriptive cross-sectional survey was conducted by using non-probability convenient sampling technique from 430 family caregivers of older adults with disability residing in Tarakeshwor and Gokarneshwor Municipalities of Kathmandu. Data was collected through in personal interview by using pretested Nepali version of structured interview questionnaire consisting socio-demographic characteristics of older adults and their family caregivers, care provision related variables, social support questionnaire and 22-item Zarit Burden questionnaire. SPSS version 25 was used for data analysis especially descriptive statistics (frequency, percentage and mean as well as standard deviation), inferential statistics (Logistic regression model: univariate and multivariate) were used to identify factors associated with caregiving burden. Results: In this study, 65.3% of family caregivers had caregiving burden in which statistically significant association was depicted with COPD, hypertension, paralysis, urinary and gastrointestinal problems, health problems, psychological status, impaired ADLs and IADLs of older adults and also occupation and economic status, residency, types and size of family, perceived extra stress, health status, duration of care, daily caring hours, and sleep time of family caregivers. The predictors of burden were older adults with hypertension [AOR:1.96 (CI: 1.12-3.43; p=0.019)]; gastrointestinal problems [AOR: 3.33 (CI: 1.35-8.21; p=0.009)]; complete impairment [AOR: 0.37 (CI: 0.16-0.87; p=0.022)] and family caregivers with low economic status [AOR: 1.79 (CI: 1.05-3.05; p=0.031)]; caring for 3-35 months [AOR 0.60 (CI: 0.36-0.98; p=0.043)]; long caring hours (≥8) [ AOR 2.84 (CI: 1.14-7.06; p=0.025)]. Conclusion: As two third of family caregivers feel burden, the predictors of burden are hypertension, gastrointestinal problems and impairment in ADLs of the older adults and low economic status, caring for 3-35 months and long caring hours (≥8) of the family caregivers. The concerned authority of these two municipalities need to address the economic need of family caregivers and local level health institutions need to develop different activities for supporting family caregivers of older adults with disabilities through home visiting. Trial registration: Not applicable

IntroductionFamily members of autistic individuals often provide support for their autistic relative throughout the lifespan which can lead to massive burden themselves. Reduced health-related Quality of Life (HRQoL) in family caregivers is assumed; however, only a handful studies on the HRQoL of family caregivers providing care to adult relatives exist as opposed to autistic children. Thus, the current study aimed to (i) investigate the current state of physical and mental HRQoL of family caregivers of autistic adults compared to the general population, and (ii) examine caregiver-related (e.g., age, subjective caregiver burden) and care recipient-related variables (e.g., symptom severity, utilization of formal services) explaining variance in the caregivers’ HRQoL.MethodsN = 149 family caregivers completed a nationwide online survey, including the Short-Form Health Survey (SF-8) in order to assess the HRQoL. T-tests were used to compare the HRQoL of family caregivers with the general population. Bivariate correlational and multiple linear regression analyses were conducted in order to identify predictors explaining variance in family caregivers’ HRQoL.ResultsFamily caregivers of autistic adults reported significantly lower physical (M = 46.71, SD = 8.72, Cohen’s d = 0.42) and mental HRQoL (M = 40.15, SD = 11.28, Cohen’s d = 1.35) compared to the general population. Multiple linear regression with the mental HRQoL as the outcome showed a significant model (F(11, 95) = 5.53, p < .001, adj. R2 = .32) with increased subjective burden explaining most of the variance in mental HRQoL (ß = .32, GDW = .141, p < .001). Multiple linear regression analysis with the outcome physical HRQoL did not reveal a statistically significant model (F(11,95) = 1.09, p = .38). However, bivariate analyses also showed a positive correlation with the subjective caregiver burden (r= .20, p < .05).DiscussionFindings highlight the need to consider HRQoL (and caregiver burden) of family caregivers of autistic adults in several healthcare settings to monitor a potential comprised health status in early stages, with the long-term goal to improve family caregivers’ HRQoL.

Background: Demographic changes (global aging, decreased fertility, increased home deaths) will present a critical need for end-of-life family caregivers of older adults at home. In order to support these family caregivers, we need to better understand their experiences, struggles, and needs. Aim: To describe and explain the process of end-of-life caregiving as experienced by family caregivers of older adults residing in the home setting. Design: The Preferred Reporting Items for Systematic Reviews and Metaanalysis (PRISMA) guidelines and Sandelowski and Barroso’s procedural steps for a metasynthesis review guided this study. Data sources: Qualitative and mixed methods literature from CINAHL, Medline, PsycINFO, and EMBASE databases and information from professional organizations were reviewed for studies that focused on family caregivers providing end-of-life care to older adults residing in the home setting. Results: A total of 24 studies were identified. Family caregivers engaged in the process of “navigating a caregiving abyss” when providing and managing end-of-life-care for older adults at home. The “caregiving abyss” consisted of four phases: (1) managing multiple roles, (2) encountering challenges, (3) mobilizing resources, and (4) acknowledging death is near. During the process family caregivers strived to “live day by day” and “maintain normalcy” to achieve the goals of honoring life’s final wishes and provide home death. Conclusion: Family caregivers of older adults at the end of life navigate a variety of challenges. The findings provide a conceptual framework to help guide the development of education, interventions, and health policy to meet family caregivers’ needs in providing quality end-of-life care.

Introduction Telehealth may offer a valuable resource for family caregivers’ physical and psychological well-being; however, understanding its effectiveness is crucial to determining its true potential. Thus, this systematic review and meta-analysis aims to examine the effectiveness of telehealth interventions focused on family caregivers’ physical and psychological well-being, along with other factors during the care of older adults with various diseases (such as neurocognitive disorders, chronic conditions, and musculoskeletal diseases). Methods PubMed, Web of Science, Scopus, and Cochrane Library databases were searched. Studies that investigated the effects of telehealth on family caregivers of older adults with any disease and a comparison group receiving any type of intervention were selected. Two independent reviewers carried out the study selection and data extraction. We conducted a meta-analysis using standardized mean differences (SMDs) to pool the continuous outcomes included. Heterogeneity ( I ² and Tau²), publication bias (Egger's test and funnel plots), risk of bias (Joanna Briggs Institute tool), potential mediators (meta-regressions), and robustness (leave-one-out method) were also assessed. Results Twenty-six studies were selected (23 randomized controlled trial and 3 quasi-experimental studies), including a total of 2932 family caregivers. Telehealth was more effective than usual care in improving psychological well-being (SMD = 0.21; p = 0.006), caregiving competence (SMD, 0.73; p = 0.007), and reducing caregiver burden (SMD = −0.26; p = 0.01) in a follow-up shorter than 4 months. It was not effective in reducing anxiety or depression (SMD = −0.18 and −0.40; p = 0.08 and 0.20, respectively), nor in improving physical fitness (SMD = −0.16; p = 0.460). Considering a follow-up period of 4–12 months, the only outcome in favor of telehealth was the improvement in managing patients’ problematic behaviors (SMD = −1.27; p &lt; 0.0001). It was not effective for psychological well-being, anxiety, depression, or caregiver burden (SMD = 0.15, 0.22, 0.08, and −0.33; p = 0.290, 0.260, 0.550, and 0.550, respectively). Conclusion Telehealth may be a valuable option for supporting family caregivers of older adults in improving psychological well-being, caregiving competence, and reducing burden, but the benefits may not last long term.

Background: Cancer is one of the common diseases in old age that imposes the burden of care on family caregivers, and by creating physical, psychological, and social problems for caregivers, it affects their healthy lifestyle. Objectives: This study aimed to determine the impact of the social support program on the health-promoting lifestyle of family caregivers of older adults with cancer. Methods: This quasi-experimental study was conducted in 2021 in Dezful-Iran. 58 eligible samples were selected consecutively and divided into intervention and control groups. The intervention group received social support. Walker and Hill-Polerecky’s Health-Promoting Lifestyle tool was completed before and 6 weeks after the intervention in both groups. Data analysis was done using SPSS software v.16. Results: The overall score of the health-promoting lifestyle in the intervention (129.58 ± 15.21) and control (116.13 ± 24.62) groups had a statistically significant difference (P = 0.01). Also, after the intervention, the interpersonal relations subscale in the intervention (24.58 ± 3.00) and control (21.62 ± 5.41) groups and the health responsibility subscale in the intervention (26.68 ± 2.79) and control (5.37 ± 22.00) groups, there was a statistically significant difference (P &lt; 0.05). However, this difference was insignificant in other subscales in the two groups after the intervention (P &gt; 0.05). Conclusions: Social Support Programs, in addition to enhancing the lifestyle of family caregivers, can also contribute to improving the quality of care for older adults. The findings of this study recommend sharing insights with nurses, formal and family caregivers of older adults with cancer, and health services policymakers to inform and guide the development of targeted interventions and support systems that can enhance the health-promoting lifestyle of family caregivers of older adults with cancer.

Family caregivers are central to the care of older adults living with dementia, particularly in African contexts where formal care services are scarce. Dementia caregiving is complex and unpredictable, often leading to emotional, physical, and economic strain. Despite these challenges, caregivers employ a range of coping strategies shaped by cultural values, religious beliefs, and family solidarity. Understanding these experiences is essential for developing appropriate support interventions, yet research in African settings remains limited compared to international contexts. The study aimed to explore the challenges faced by family caregivers of older adults with dementia and to identify the coping strategies they adopt. A systematic review of qualitative studies was carried out to examine the challenges and coping strategies of family caregivers of older adults with dementia in Africa. Comprehensive searches were conducted across major databases, including PubMed, CINAHL, MEDLINE, SCOPUS, ScienceDirect, African Journals Online (AJOL), PsycINFO, and EBSCOhost. The search initially yielded 3,742 records. After screening and eligibility assessment of 72 full-text articles, 15 studies met the inclusion criteria and were incorporated into the final review. The included studies were conducted between 2010 and 2025. Data were synthesized thematically, and findings were reported narratively to capture recurrent patterns and variations across the studies. Two overarching themes with several sub-themes emerged. 1.Challenges of Family Caregiving (emotional and psychological strain, physical demands and lifestyle disruptions, financial and economic burden, limited access to resources and services, and stigma and misconception. 2. Coping Strategies of Caregivers (emotion-focused coping, problem-focused coping, social coping, and resilience and adaptation.) CONCLUSION: Family caregivers of older adults with dementia in Africa face significant emotional, social, and economic challenges, often experiencing anxiety, exhaustion, and social isolation. Despite these burdens, caregivers demonstrate resilience through cultural values, family support, and adaptive coping strategies. However, the lack of formal support systems exacerbates their vulnerability, highlighting the urgent need for caregiver education, psychosocial interventions, and financial protection mechanisms.

Introduction: Family caregivers face a high burden when caring for a person with a chronic illness. The close engagement of family caregivers in the care of older adults with COPD may predispose them to anxiety, frustration, and social isolation, which may consequently affect their resilience and perceived stress. Objective: The purpose of this study was to examine the relationship between caregiver burden and resilience in family caregivers of older adults with COPD. Materials & Methods: This cross-sectional, descriptive study was conducted on 240 family caregivers of older adults with COPD who were referred to a specialty pulmonology clinic in Iran. The participants were recruited by convenience sampling. Data were collected using the Zarit Burden Inventory (ZBI) and the 25-item Connor Davidson Resilience Scale (CD-RISC-25). Statistical analyses included t-test, ANOVA, Pearson’s correlation coefficient, and stepwise multiple regression. Results: The mean age of the caregivers was 51.20 ± 11.84 years. The majority of participants experienced low (55.7%) or moderate (43.8%) caregiver burden. The overall mean caregiver burden score was also moderate (20.01 ± 6.46). The overall mean resilience score was high (77.85 ± 10.17). An inverse relationship was found between resilience and caregiver burden (r= -0.38; P<0.001)). Conclusions: The results showed that as resilience increases, caregiver burden decreases. The present study recommended that implementing of early interventions (counseling intervention) for promoting resilience, increase their tolerance to problems, and reduce caring burden among family caregivers of older adults with COPD. Funding Information: This study was supported by research deputy at Babol University of medical sciences Declaration of Interests: There are no conflicts of interest. Ethics Approval Statement: The study was approved by the Ethics Committee of Babol University of Medical Sciences, Babol, Iran (Ethic code: IR.MUBabol.HRI.REC.1398.326). Written informed consent was obtained from all the participants prior to beginning the study.

Family caregiving is an important form of informal care provided to frail, community-dwelling older adults. This article describes a health and social collaborative case management (HSC-CM) model that aims to optimize the support given to caregivers of frail elderly adults. The model was characterized by a comprehensive assessment to identify the caregiver's needs; a case management approach to provide integrated, coordinated, continued care; and multidisciplinary group-based education customized to the caregiver's individualized needs. A pilot study using a randomized controlled trial study design was conducted to evaluate the effects of the HSC-CM on caregiver burden and health-related quality of life of family caregivers of frail elderly adults. Sixty family caregivers (mean age 61.3 ± 15.5) of frail older adults recruited from a community center for elderly adults in Hong Kong were randomly assigned to receive a 16-week HSC-CM intervention or usual care. Case managers who conducted a comprehensive assessment of the care dyads to identify caregiver needs using a case management approach to optimize care coordination and continuity led the HSC-CM. These case managers served as liaisons for multidisciplinary efforts to provide group-based education according to caregiver needs. Family caregivers who participated in the HSC-CM had significantly greater improvement on the Caregiver Burden Index (p = .03) and on the Medical Outcomes Study 36-item Short-Form Survey subscales, including vitality (p = .049), social role functioning (p = .047), and general well-being (p = .049). This study provides preliminary evidence indicating that client-centered care, a case management approach, and multidisciplinary support are crucial to an effective caregiving support initiative. A full-scale study is required to validate these findings.

Background: Caregivers’ self-assessments of the care they provide are the main vehicles that help explore their experiences and are thought to have a major role in care outcomes. The rising number of people with dementia and their need for care provided within the family makes family caregiving a major topic for study and evaluation. Objectives: The present study was conducted to assess the psychometric characteristics of the Persian version of the revised caregiving appraisal scale (RCAS) in family caregivers of older adults with dementia. Methods: In this cross-sectional methodological study, 236 family caregivers were recruited through convenience sampling. The revised caregiving appraisal scale (RCAS) was translated using the international quality of life assessment (IQOLA) protocol, and then a panel of experts examined its face and content validities. To ensure construct validity, the translated revised caregiving appraisal scale (RCAS) was completed by 236 family caregivers, and the factor construct of the scale was assessed using five initial factors for confirmatory factor analysis. Internal consistency was confirmed using Cronbach’s alpha, and test-retest using the intraclass correlation coefficient (ICC). The confirmatory factor analysis was performed with LISREL-8.8 software for Windows®. Results: The mean age of the participating caregivers was 53.5 ± 13.13 years. The content and face validities of the scale were confirmed using the feedback of the family caregivers and panel of experts. The confirmatory factor analysis results reported appropriate values for all the fit indices (RMSEA = 0.046, df / χ2 = 2.428, CFI = 0.98, AGFI = 0.84, and GFI = 0.9), and the 5-factor model was confirmed with 27 items. The scale-level Cronbach’s alpha was reported as 0.894 and the scale-level ICC as 0.94. The scale met the minimum reliability standards (Cronbach’s alpha and intraclass correlation coefficient > 0.7). Conclusions: This study has provided some preliminary evidence of the reliability and validity of the Persian version of RCAS when used with family caregivers of older adults with dementia.

Family caregivers are primarily responsible for the care of older adults with dementia, and the demands of this care increase as the end of life approaches. Experiencing the end of a family member's life can be stressful, and caregivers consider important to know how to identify when their loved one is approaching the end of life in order to prepare for this moment. Thus, as the family is primarily responsible for the older adult with dementia, it is essential to know the meanings of the end of life attributed by family caregivers. To analyze the perceptions of family caregivers of older adults with dementia about the end of life. This is a qualitative, descriptive and exploratory study. The convenience sample consisted of family caregivers of older adults with dementia. The inclusion criteria were being a family member directly involved in the care of the older adult with dementia and being 18years of age or older. Data were collected from individual semi-structured interviews. The number of participants was defined during the interviews using the saturation criterion. Data were analyzed using the thematic analysis technique. A total of 63 family caregivers participated, 74.6% of whom were women, predominantly wives and daughters. Two themes resulted from the data analysis: (i) Different perspectives on the end of life: from death itself to a sad, painful and long grief process; and (ii) End of life in the perspective of transcendence. The meaning of the end of life was perceived in different ways by family caregivers. Understanding how they perceive and experience the end-of-life process of the older adult with dementia helps to clarify the best ways for the health professionals to approach and intervene with these families.

BackgroundProviding long-term home care to older adults with chronic diseases may endanger the physical, mental, social, and spiritual health of caregivers and lead to care strain.ObjectiveThis study aimed to assess the relationship of caregiver strain with resilience and hardiness in family caregivers of older adults with chronic disease.MethodologyThis cross-sectional correlational study was conducted in 2020–2021 in Tehran. Participants were 230 family caregivers randomly recruited from 8 urban health care centers. Data were collected using a personal characteristics questionnaire, the Modified Caregiver Strain Index, Connor-Davidson Resilience Scale, Family Hardiness Index, and the data were analyzed by using SPSS 22 version. Pearson’s correlation coefficient was applied for data analysis. P-values ≤0.05 were considered significant.ResultsA total of 230 caregivers participated in the study. The mean age of participants was (46.65 ± 13.63) years and most of them were female (73.9%). Mean scores of caregiver strain, resilience, and hardiness in family caregivers were 16.23 ± 4.5, 39.89 ± 10.9, and 31.21 ± 7.79, respectively. Pearson correlation showed a significant and inverse correlation between caregiver strain and resilience (r = -0.310, P = 0.002), and also a significant and inverse relationship between caregiver strain and hardiness (r = -0.276, P = 0.001).ConclusionIn this study, family caregivers had moderate caregiver strain, low resilience, and high hardness. Caregiver strain in family caregivers of older adults with chronic disease is an important health issue associated with resilience and hardiness. To promote health, effective adaptation to long-term care, and reduce caregiver strain, designing effective interventions to increase resilience and hardiness in family caregivers seems necessary.

Family and kinship care is a common way of caring for older adults, particularly in rural Ethiopia, where institutional care arrangements are nonexistent. Moreover, the majority of studies on family caregivers of older adults were conducted in western cultures, which makes it difficult to understand family caregivers in the Ethiopian context. This study aims at exploring the experience of family caregivers for older adults in a co-residential setting. Specifically, it focuses on answering caregiving challenges and available social supports for family caregivers in a co-residential living arrangement. This study used a qualitative research method employing phenomenology to understand the lived experience of family caregivers for older adults in rural northwestern Ethiopia. Data were collected through a semi-structured interview with eight purposefully selected family caregivers of rural older adults. Regarding family caregivers's challenges and available social supports, four themes emerged from the collected data. These are economic challenges, the incongruence of older adult needs and caregiving capacity, work-caregiving conflict, work-social life conflict, and the presence of social support from different individuals and community-based institutions. In addition to strengthening caregiver support environments, it's critical to develop the capacity of family caregivers through training, economic support, and the integration of family caregivers with health extension workers.