Family Caregiver Burden Research Articles

A study on the correlation between family caregiver burden, anxiety, depression, and the sleep quality of adolescent depression patients

A study on the correlation between family caregiver burden, anxiety, depression, and the sleep quality of adolescent depression patients

Medical Access and Care Continuity: Qualitative Assessments of Patients with Breast Cancer and Family Members' Experiences Following the 2011 Triple Disaster in Fukushima, Japan.

While studies have examined the effects of large-scale disasters on disaster-vulnerable individuals, these analyses may not capture the full impact. This study qualitatively explored the impacts of the March 2011 Fukushima triple disaster on patients with breast cancer and their families, aiming to highlight the importance of incorporating family narratives to grasp the full effect of large-scale disasters. Utilizing the medical records from two hospitals, deceased patients with breast cancer from the disaster period were identified. Relatives were interviewed using a semi-structured approach. Thematic analysis was conducted via the Braun and Clarke method and Taguette transcription software. Interviews with seven family members of six patients revealed three main themes: the family's caregiving burden and their deepened bonds with the patient, the patients' extensive medical challenges and their physical and mental decline, and the shared confusion during the disaster due to resource shortages and evacuation dilemmas. This study uncovered significant infrastructural issues such as reduced medical support and the heavy caregiving load on families, amidst some strengthened relationships during a time of crisis. Future research should investigate these issues across various disaster contexts, and proactive measures should be implemented to prevent exacerbation of these challenges.

DUKUNGAN SOSIAL DAN BEBAN PENGASUH DENGAN MEDIASI EFIKASI DIRI FAMILY CAREGIVER ODAPUS

Lupus not only brings an impact on the people suffering from it but also gives a burden for the family as the main treatment unit for the people with Lupus. Social support from family, friends or closest people is assumed to be able to grow the self-confidence of a family caregiver in coping with any drawbacks in caregiving as it can lessen the burden. This study specifically aimed to observe the impacts of the support of family, friends and closest people on the burden of caregiver through the mediator of self-efficacy to the family caregiver of people with Lupus. This article is a part of the thesis using the quantitative approach with family caregivers of people with Lupus as the research respondents (N=72). The research data collection was carried out online using Zarit Burden Interview, Multidimensional Scale of Perceived Social Support, and Caregiver Self-Efficacy Measures. Data were analyzed by means of mediation analysis technique through JASP. The results of the study showed that self-efficacy only acted as a mediator for the relation between family support and the burden of the caregiver. Family support is a very important factor to increase caregiver self-efficacy which in turn can reduce the care burden for family caregivers.

Design, Implementation and Evaluation of a Health Promotion Program for Family Caregivers of Chronic Mental Disorders: A Mixed Methods Study.

Family caregivers of patients with chronic mental disorders who are responsible for taking care of the patient face many problems that can endanger the psychosocial health of these people. This study was conducted to develop, implement, and evaluate a psychosocial health promotion program for family caregivers of patients with chronic mental disorders. This research is an exploratory sequential mixed-method study conducted using a qualitative-quantitative design. A qualitative study was conducted to explain the needs and psychosocial problems and the solution to improve the psychosocial health of family caregivers of patients with chronic mental disorders in two psychiatric care centers in Isfahan were conducted. Then the program was written based on Kern's programming development approach. In the quantitative stage, a part of the developed program was implemented as virtual group psychoeducation for 67 caregivers, and its impact on caregivers' burden of care was evaluated. The findings from the qualitative phase of the study led to the emergence of 3 main categories and the findings from the quantitative phase of the study indicated that the implementation of the compiled program causes a significant reduction in the burden of care in family caregivers of chronically mentally ill patients (p<0.05). The current program was prepared and developed using an evidence-based approach. Policymakers and members of the mental health team can take a valuable step toward reducing the care burden of family caregivers of chronic mental patients by using the content of the developed mental health promotion program.

Mental health impact of the COVID-19 pandemic on patients with neurodegenerative diseases and perceived family caregiver burden in Lima, Peru.

Neurodegenerative diseases lead to difficulties with functional activities. In Peru, most caregivers are family members. Little is known about the COVID-19 pandemic's effect on caregivers in Peru. This was a cross-sectional, prospective study of family caregivers of dependent patients with dementia or Parkinson's Disease in Lima, Peru. A caregiver burden and mental health questionnaire was administered to the caregiver. We enrolled 48 caregivers (65% females, mean ± SD age 49.0 ± 12.3 years); 70% of patients had dementia. Nearly 40% of caregivers reported having full-time jobs, and 82% felt overwhelmed with almost 75% dedicating more time to caregiving during the pandemic. Caregivers perceived patients felt lonelier (52%), had an increase in hallucinations (50%), or forgetfulness (71%) compared to pre-pandemic. Our study highlights that perceived caregiver burden and patient behavioral symptoms may have been exacerbated during the pandemic. In countries such as Peru, more caregiving resources and interventions are needed.

FACTORS RELATED TO THE FRAILTY OF OLDER PEOPLE WITH STROKE IN TEHRAN

Abstract Older people are the fastest growing segment of the population particularly in developing countries such as Iran. Older people encounter not only decreasing physical function but also diseases such as stroke which can lead to their frailty. This study was conducted to describe factors related to frailty of older people with stroke in Tehran. This descriptive, correlational study was conducted on a sample of 170 older people with stroke above age 60 in ten educational hospitals in 2020. A socio-demographic questionnaire, the Zarit Scale of Caregiver Burden, and the Frailty Index for Elders were used for data collection. Content validity and Cronbach’s alpha were used for evaluating the validity and reliability of questionnaires. Data were analyzed with SPSS 25. 55.9% of participants were female and 54.1% lived with their spouse; mean age was 77.18 (± 8.57). 92.4% were at risk for severe frailty, and 7.6% were at risk of frailty. The scores of frailty were associated significantly with increasing family caregiver burden and hospital admission rates, not having treatment insurance, and not having a reliable income source. The best predictors of frailty were family caregiver burden, hospital admission rates, and treatment insurance. The study showed that frailty is very common in older people with stroke and is related to a number of factors. Reducing family caregiver burden and admission rates to hospital, and having treatment insurance, will help prevent or reduce frailty in older people with stroke.

THE IMPACT OF HOME-BASED CARE SERVICES ON ADULT CHILDREN AS CAREGIVERS OF OLDER ADULTS IN CHINA

Abstract The family has always been the primary resource for elder care support in China, and adult children are the main caregivers of older parents. In the background of rapid development of home-based care services for older adults, this study aims to explore the impacts of the home-based care services on the adult children as caregivers for their older parents. Based on a national representative sample of aged 60 years or older (N=8674) from the China Longitudinal Aging Social Survey (CLASS) in 2018 and 2020, this study used propensity score matching difference-in-differences method to analyze the data. Firstly, we found that home-based care services for older adults could reduce the care burden of family caregivers by sharing part of the instrumental support effectively for the elderly. Secondly, this substitution effect is more significant among the families with more dependable and vulnerable older adults. Finally, the use of home-based care services appeared not to affect the intergenerational relationships between older parents and their adult children caregivers. Home-based care services may relieve the burden of family caregivers by providing instrumental care support for older adults. Therefore, it is very necessary to accelerate the implementation of an elder care programs in community to benefit the older and younger generations in Chinese family.

THE BENEFITS OF LONG-TERM CARE INSURANCE FOR FAMILY CAREGIVERS: EVIDENCE FROM CHINA

Abstract This paper aims to evaluate the impacts of the long-term care insurance (LTCI) program on family caregivers of older adults with functional limitations in mainland China. The study used data collected from 1,658 LTCI beneficiaries or those in the LTCI application process in 16 pilot Chinese cities in 2021. Descriptive statistics, chi-square tests, and multiple regression analyses were used to analyze the data. The results indicate that LTCI beneficiaries are more likely to receive institutional care than non-beneficiaries (27.8% vs. 16.8%), reducing the responsibilities and potential burden of family caregivers. LTCI beneficiaries are also more likely to receive social care services than non-beneficiaries (35.9% vs. 26.7%). Family caregivers of LTCI beneficiaries spend less time per day on care than non-beneficiaries (15.45 vs.16.59 hours), and they are less likely to delay their work due to caregiving (41.4% vs. 60.7%). Additionally, LTCI has a positive impact on various aspects for family caregivers, with over 40% reducing their caregiving time, 55.0% reducing care service costs, 68.5% feeling that LTCI has reduced their physical burden, and 77.9% indicating that their psychological burden has been lessened. The study concludes that the establishment of long-term care insurance nationwide should be promoted as the pilot sites have seen significant positive effects on family caregivers. LTCI should also consider more direct support to family caregivers.

Health-related quality of life in family caregivers of autistic adults.

Family 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. N = 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. Family 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). Findings 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.

Burden, coping and resilience among caregivers for patients with chronic obstructive pulmonary disease: An integrative review.

This study aims to synthesise quantitative and qualitative evidence to comprehensively examine the burden of family caregivers of chronic obstructive pulmonary disease patients and to understand their coping strategies and related resilience factors. Long-term chronic obstructive pulmonary disease care causes heavy psychological and physical burden to caregivers, which is related to the coping strategies used. Resilience is a protective factor originating within the individual and has become a concept related to illness, health and care. An integrative review. Relevant literature was comprehensively searched from China Biology Medicine, China National Knowledge Infrastructure, Wan Fang, PubMed, Embase, Web of Science and Ovid databases from the establishment of the database till January 2023, and the quality of the selected articles was evaluated. Reporting was done according to a PRISMA checklist. The burden of family caregivers with chronic obstructive pulmonary disease includes poor health, worry and fear, anticipatory loss and uncertainty, relationship tensions and disagreements, loss of identity and social isolation, lack of supportive knowledge and financial burden. Family caregivers used problem-centred coping, emotion-centred coping, avoidance coping, social support and dyadic coping with their patients to manage their burdens. The factors chronic obstructive pulmonary disease associated with a caregiver's resilience included a higher level of knowledge, social and familial support, a close relationship with patients, a caregiver's sense of responsibility, the patient's high self-efficacy, etc. CONCLUSIONS: The findings show that caregivers of chronic obstructive pulmonary disease patients face multiple burdens, adapt through different coping styles and have different psychological consequences, while coping style and mental health status also affect the magnitude of burden. The findings informed health professionals about personalised chronic obstructive pulmonary disease home care interventions to reduce caregiver burden, effectively manage illness and maintain family intimacy. No patients, families, service providers or members of the public were involved in this study.

A Music Based Intervention: “Stay with Me” Results Reveal Challenges and Opportunities related to Burden in Family Caregivers of People with ADRD

AbstractBackgroundFamily caregivers of home‐based people with ADRD took part in a 6‐week psychoeducational music‐based intervention, facilitated by a board‐certified music therapist. Caregivers identified care recipients’ strengths and needs related to symptoms of ADRD. In the following weeks, caregivers learned how to incorporate music‐based activities during their care. This included caregiver singing, adding background music to bath/shower routines, creating personalized playlists, the use of music for sundowning, etc. A concurrent, mixed methods approach was employed. The Short Zarit Burden Interview (12 item) was completed at baseline and follow‐up. During week 6, in small groups ranging from 2 – 6 persons, family caregivers (n = 20) rewrote the lyrics of Stand by Me, using a fill‐in‐the‐blank template.MethodA content analysis of rewritten lyrics revealed a focus on themes. A paired samples t‐test was performed to determine changes in burden. To merge the lyrics and burden scores, a joint display analysis was performed. A box plot of mild to high burden was created to demonstrate how the post‐test scores were distributed across levels of burden accompanied by a descriptive display of the most dominant lyrics that reflected each level.ResultFollowing the music‐based intervention, a paired samples t‐test found that caregiver burden reduced significantly from baseline (from M = 20.73 ± 6.72 to M = 16.1 ± 4.89; p = .000) indicating that caregiver participation in the 6‐week workshop contributed to perceived reduced burden. Post‐tests and box plot showed most caregivers (80%) scored with mild to moderate burden following the study. The results from content analysis of the lyrics described caregivers’ desire to persevere without fear, issues of falling or failing (a replica of the progression of ADRD) but indicate a desire to stay with the person for whom they are caring.ConclusionBurden decreased following participation in the psychoeducational, music‐based intervention. Nevertheless, caregivers cope with a range of emotions related to caring for a person with ADRD, revealing the facilitation of music‐based interventions at home is a useful tool for caregivers but also a need for continuous support. The study is ongoing.

Psychological Distress in Alzheimer’s Disease Family Caregivers: Gender Differences and the Moderated Mediation of Resilience

Different studies have reported gender differences in the variables of psychological distress, burden, social support, and resilience in family caregivers of relatives with Alzheimer’s disease; however, there is no clear evidence of the specific role of burden, social support, and resilience between gender and psychological distress. The aim of the present study is to clarify the role of these variables. Burden, psychological distress, social support, and resilience have been assessed in a cross-sectional design with a convenience sample of 140 family caregivers of relatives with Alzheimer’s disease. Our results confirm gender differences in terms of psychological distress, with higher scores found in female than in male caregivers, whilst male caregivers showed higher scores in terms of resilience than female caregivers. No gender differences have been found in terms of burden and social support. In addition, moderated mediation was obtained via the interaction of gender and social support on resilience, which plays a mediating role in psychological distress. Social support and resilience have shown a protective role concerning the mental health of caregivers, but female caregivers need higher social support to present a similar level of resilience to male caregivers.

P114: Experiences of nursing home residents with dementia and chronic pain using an interactive social robot: A qualitative study of multiple stakeholders

Objective:To explore the benefits and barriers of using an interactive robotic seal (PARO, Figure 1) based on the experiences of nursing home residents living with dementia and chronic pain, their family members, and formal caregivers.Methods:Semi-structured interviews were conducted alongside a feasibility randomized controlled trial at one nursing home in Brisbane, Australia between July 2021 and January 2022 (Trial registration: ACTRN 12621000837820). Residents with dementia and chronic pain interacted with PARO individually for 15 min once or twice daily, five days per week for three consecutive weeks. After which, individual interviews were conducted with residents who were capable of communicating (n=13), family members (n=3), registered nurses (n=4), care assistants (n=11), a physical therapist (n=1), a diversional therapist (n=1) and the facility manager (n=1) who experienced or observed the residents’ interactions with PARO. The interviews were audio-recorded, transcribed, and analyzed using thematic analysis.Results:Almost all participants reported that interacting with PARO benefited residents with dementia and their caregivers. These benefits included (1) reducing pain by providing distraction and stimulation; (2) reducing behavioral and psychological symptoms of dementia; (3) promoting positive emotions by recalling memories; and (4) reducing anxiety and care burden for family and formal caregivers. Neutral attitudes toward PARO were reported by three residents with mild cognitive impairment as they reported it did not make any difference. Barriers to using PARO included limited staff training and the implementation of person‐ centered care due to limited resources.Conclusion:Overall, multiple stakeholders were positive about using PARO to reduce pain and behavioral symptoms of nursing home residents living with dementia and chronic pain. PARO may also reduce the care burden of family and formal caregivers. PARO might be incorporated into daily practice to support nursing home residents living with dementia. Improving staff training and understanding individual preferences of residents may enhance the implementation of PARO in this population.Figure 1A resident living with dementia and her family after interacting with PARO (Distribution of this photo has been approved by the resident and her family)

Predictors of Burden in Families of Youth Experiencing Mental Health and/or Addiction Concerns in Ontario, Canada

This study explored factors impacting caregiver burden (CB) in families of youth with mental health and/or addiction (MHA) issues through a cross-sectional survey of Ontario caregivers (n = 259). Zero-order correlations explored caregiver, youth, and service factors and CB. Regressions explored contributions of significant factors to the variance in CB. Barriers to services, number of youth symptoms, and waitlist status significantly predicted CB. The specific barriers that were significantly associated with CB were service costs, service availability, and youth motivation to participate in services. Tailoring interventions and policies to reduce service waitlists and barriers may alleviate CB and improve youth and family outcomes.

ATTITUDES TOWARDS MENTAL ILLNESS TO DECREASE THE FAMILY CAREGIVERS’ BURDEN

Background: Community-based mental health services should be aware of the role of family and society. With the stigma issues in mental illness that still remain, the impact would be greater on the family caregivers. Their behavior toward patients creates a burden on care.&#x0D; Objectives: Assess the relationship between attitude toward mental illness and burden of family caregivers.&#x0D; Methods: Descriptive with a cross sectional approach. There were 120 family caregivers of patients with Schizophrenia in the hospital in Surabaya, Indonesia participated on this study by using purposive sampling technique. The instruments on this study were Attitudes towards Schizophrenia Questionnaire (ATSQ) and Burden Assessment Schedule (BAS).&#x0D; Results: The higher burden correlates with the negative attitude toward mental illness (r(118)= .54, p= .000).&#x0D; Conclusion: Realistic attitude would relieve the burden for family caregiver. Therefore, need more knowledge for family and society to shape their behavior toward patients with mental illness.&#x0D; &#x0D;

Impact of an automated, remote monitoring and coaching intervention in reducing hospice cancer family caregiving burden: A multisite randomized controlled trial.

Care for those with life-limiting cancer heavily involves family caregivers who may experience significant physical and emotional burden. The purpose of this study was to test the impact of Symptom Care at Home (SCH), an automated digital family caregiver coaching intervention, during home hospice, when compared to usual hospice care (UC) on the primary outcome of overall caregiver burden. Secondary outcomes included Caregiver Burden at weeks 1 and 8, Mood and Vitality subscales, overall moderate-to-severe caregiving symptoms, and sixth month spouse/partner bereavement outcomes. Using a randomized, multisite, nonblinded controlled trial, 332 cancer family caregivers were enrolled and analyzed (159 SCH vs. 173 UC). Caregivers were primarily White (92%), female (69%), and spouse caregivers (53%). Caregivers provided daily reports on severity levels (0-10 scale) for their anxiety, depressed mood, fatigue, disturbed sleep, and caregiving interference with normal activities. These scores combined constituted the Caregiver Burden primary outcome. Based on reported symptoms, SCH caregivers received automated, tailored coaching about improving their well-being. Reports of moderate-to-severe caregiving symptoms also triggered hospice nurse notification. Secondary outcomes of Mood and Vitality were subcomponents of the Caregiver Burden score. A combined bereavement adjustment tool captured sixth month bereavement. The SCH intervention reduced overall Caregiver Burden compared to UC (p<.001), with a 38% reduction at 8weeks and a medium-to-large effect size (d=.61). SCH caregivers experienced less (p<.001) disruption in both Mood and Vitality. There were higher levels of moderate-to-severe caregiving symptoms overtime in UC (OR, 2.722). All SCH caregivers benefited regardless of caregiver: sex, caregiver relationship, age, patient diagnosis and family income. SCH spouse/partner caregivers achieved better sixth month bereavement adjustment than UC (p<.007). The SCH intervention significantly decreased caregiving burden over UC and supports the maintenance of family caregiver mood and vitality throughout caregiving with extended benefit into bereavement.

Effect of teaching health-promoting behaviors on the care burden of family caregivers of hemodialysis patients: a four-group clinical trial

IntroductionChronic kidney disease could have a profound effect on the life of patients and family caregivers. The caregivers’ care burden increases as the disease progresses. Interventions reducing care burden should be investigated. Educational interventions could affect family caregivers’ care burden among hemodialysis patients. However, most studies and interventions have focused on caregivers. Therefore, this study aims to compare the effect of teaching Health-promoting behaviors on the care burden of family caregivers of hemodialysis patients.Materials and methodsThis trial was conducted using a pretest-posttest design and follow-up after one month. Hemodialysis patients and their family caregivers were selected using convenience sampling method. In total, 124 patient-caregiver pairs were divided into four groups of patient-centered education, caregiver-centered education, Patient and caregiver education and control by block randomization (15 blocks of 8 members and 1 block of 4 members) (n = 31 pairs per group). The intervention (teaching health-promoting behaviors) was performed in 8 sessions using the teach-back method, except for the control. The data were collected by patient and caregiver demographic forms and Novak and Guest care burden inventory as well as following the treatment regimen in three stages (before, immediately after and one month after the intervention). Demographic variables were compared among the four groups using ANOVA, Kruskal-Wallis and Chi-square test. The intragroup comparison of the main variables was made using the repeated measures ANOVA with modified LSD post hoc test. The intergroup comparison was made by one-way ANOVA with LSD post hoc test.ResultsOut of 124 caregivers participating in the study, 68 (54.8%) were female. Also, out of 124 patients participating in the study, 86 (69.4%) were male. The mean age of the caregivers and patients was 39.2 ± 11.31 and 54.23 ± 14.20 years old, respectively. There was a statistically significant difference in the mean total care burden scores of the pre-test and post-test between the four groups (p < 0.001). The total care burden decreased in patient-centered, caregiver-centered and Patient and caregiver education groups. However, this reduction in the caregiver-centered and Patient and caregiver education groups was significantly higher than the patient-centered education group (p < 0.001).ConclusionThe results revealed teaching health-promoting behaviors reduced care burden. Moreover, caregiver-centered approach could reduce care burden more than patient-centered approach. Therefore, this could be used as a supportive method to improve the health of patients and caregivers.Trial registration number (TRN)IRCT20090522001930N4.Date of registration2021-11-12.

Nursing Support for Caregiver Burden in Family Caregivers of Patients With Cancer: A Scoping Review.

Purpose: To identify nursing support for caregiver burden in family caregivers of patients with cancer. Methods: This scoping review was guided by Arksey and O'Malley's six-stage scoping review framework. All available published articles from database inception to July 31, 2023 were systematically searched through PubMed, CINAHL, CENTRAL, and Ichushi-Web of the Japan Medical Abstract Society databases with additional relevant studies from the article list. Each key journal was manually searched. Results: Overall, 502 articles were screened, and 34 were finally included. The results of the qualitative thematic analysis were categorized into 7 components of nursing support: psychological and educational support, psychological and educational support using mainly non-face-to-face (Information and Communication Technology), psychological and educational support mainly using non-face-to-face (telephone) methods, mindfulness to support, support aimed at reducing caregiver stress, support for both patients and caregivers, and others. Of the 34 studies, 23 were randomized controlled trials (RCT), and the remaining 11 were non-RCTs. Conclusion: The results of the scoping review categorized nursing support for caregiver burden in the family caregivers of patients with cancer into 7 components. Future research should examine the feasibility of implementing these components.

An Explanation of the Concept of the Care Burden of Family Caregivers of Children with Autism Spectrum Disorder from the Perspective of Family Caregivers

Background: Autism spectrum disorder (ASD), characterized by challenges with social skills, repetitive behaviors, speech, and nonverbal communication, has greatly affected family caregivers, leading to subjective and objective care burdens on them. Objectives: The aim of this study was to explain the care burden of family caregivers of children with ASD from the perspective of family caregivers. Methods: In this qualitative study, 14 family caregivers were purposefully selected. The data were collected using semi-structured, in-depth interviews. The coding of the data was performed using MAXQDA 10 software, and then the data were analyzed by the content analysis method. Results: After the data coding, 266 codes were obtained, which were then classified into three main categories, including context and background, health factors (physical and mental health), and social support (formal and informal support). Conclusions: The results of the study showed that family caregivers bear the caregiving and mental burden of taking care of their autistic children. Besides adding to our body of knowledge and understanding of the problems encountered by caregivers, this study showed that the caregiving burden can be reduced by providing social support for the caregivers of autistic children.

Family conflict over illness beliefs and care strategies: implications for burden in family caregivers

Objectives Family conflict is an understudied aspect of the caregiver experience. Drawing from the stress process model, the present study examined the prevalence and correlates of conflict over illness beliefs (e.g. conflict over the care recipient’s illness and need for facility placement) and family care strategies (e.g. lack of involvement and support from family members). Methods Adult child and spouse caregivers (N = 579) of persons with physical or cognitive impairment from clinic and internet samples completed the Caregiver Reaction Scale (CRS) to assess each topic of conflict and burden. Results Most caregivers reported conflict with family members over care strategies (63%) or illness beliefs (55%). Clinic caregivers reported greater illness beliefs conflict than online caregivers. Adult children reported greater illness beliefs and family care strategies than spouses. Male caregivers were more likely than female caregivers to report care strategies conflict. Caregiver overload was significantly associated with family care strategies conflict. Both conflicts were positively associated with caregiver burden. Conclusions Findings further support that family conflict is a widespread concern associated with burden among online and help-seeking caregivers. Caregiving relationship type and gender may increase likelihood of each conflict. Findings inform recommendations for clinical intervention and assessment of family caregivers.