Caregiver Resilience Research Articles

Factors Associated with and Predictive Model for Resilience in Family Caregivers of Care-Dependent Adults

Background: Caring for dependent people is an intense task that leads family caregivers to suffer physical or mental pathologies. Resilience is a protective factor that makes an individual more resistant to adverse events. Some characteristics of the caregiver or the care provided predispose the caregiver to be less resilient. Knowing these characteristics will allow us to detect vulnerable caregivers. Aim: The aim of this study was to explore the factors associated with caregiver resilience and establish a predictive model, including the relationship between preparedness, burden, resilience, and anxiety. Materials and Methods: The study design was descriptive, observational, and cross-sectional, with purposive sampling. The sample included 172 family caregivers of care-dependent patients in Spain. Questionnaires were administered to assess caregiver resilience, anxiety, burden, and the preparedness of care-dependent patients. Correlation, univariate, and multiple linear regression analyses were performed to identify the factors associated with resilience. Results: We found that there is a correlation between resilience, preparation, and burden. Factors related to resilience include age, the caregiver’s health status, kinship, childcare, and state aid granted. Caregiver preparedness is the factor that most predicts caregiver resilience in our model. Caregivers with high levels of resilience also demonstrated high levels of preparedness and experienced less burden than those with low levels of resilience. Conclusions: These findings emphasize the relevance of improving the preparation of family caregivers to increase their resilience and, at the same time, the quality of care provided.

Examining behavioural determinants among caregivers of children with attention-deficit hyperactivity disorder using the human action process framework

This study assessed the caregiver’s adaptability and appropriate parenting behaviour towards children with Attention-Deficit Hyperactivity Disorder (ADHD) based on their background and mental health using the theory of Health Action Process Approach (HAPA). The study recruited 24 caregivers who completed surveys at four-weekly intervals. A moderated mediation model was used to examine the mediating effects of intentions, actions, and caregivers’ resilience. The results showed that 19 of the consenting caregivers were exposed to educational intervention on HAPA constructs, and completed assessments of behaviour-change in pre- and post-training. There was an improvement in caregivers’ knowledge after training. This included improved knowledge on how to properly give care to children with ADHD enabling them to stay mentally healthy (p < 0.05). Caregiver resilience can be determinant in behaviour change. Importantly, the link between resilience and reduced stress could be mitigated by encouraging caregivers to be stronger and more responsive. This can be a comprehensive discussion in nursing, especially about how HAPA can be used as a practical application for parenting patterns for children with ADHD.

Resilience and coping styles in family caregivers of terminally ill patients: A cross-sectional survey.

Coping styles can be improved by dyadic palliative care interventions and may alleviate patients' and family caregivers' distress. Moreover, family caregivers' preloss resilience protects against depression after bereavement. This study aimed to determine the types of coping styles can be encouraged to increase resilience. A self-reported questionnaire survey was administered to family caregivers at the 4 palliative care units, and their resilience was assessed using the Connor-Davidson Resilience Scale (CD-RISC) and their coping styles were assessed using the Brief Coping Orientation to Problem Experienced, as well as their background characteristics. Among 291 caregivers with a mean CD-RISC score of 56.2 (standard deviation: 16.13), internal locus of control, educational level, and history of psychotropic drug use were associated with resilience. After adjusting for the aforementioned factors, more frequent use of positive coping styles such as active coping (Spearman's ρ = 0.29), acceptance (ρ = 0.29), positive reframing (ρ = 0.29), planning (ρ = 0.24), and humor (ρ = 0.18), was found to be associated with higher resilience. On the contrary, more frequent use of negative coping styles such as behavioral disengagement (ρ = -0.38), self-blame (ρ = -0.27), and denial (ρ = -0.14) was found to be associated with less resilience. By assessing internal locus of control, educational level, and history of psychotropic medication use of family caregivers, as factors associated with their respective resilience, may help identify less resilient family caregivers who are at risk for developing major depression after bereavement. In addition, coping skill-based educational interventions targeting patients and their family caregivers that focus on specific coping styles associated with resilience may increase family caregivers' resilience, resulting in less emotional distress and a lower risk of major depression after bereavement.

"It Isn't What I Had to Do, It's What I Get to Do": The Experiences of Black Family Caregivers Managing Dementia.

Black family caregivers of persons with dementia experience high levels of stress that can negatively affect caregiver health outcomes and reduce caregiving capacity. However, Black caregivers tend to report low levels depressive symptoms or other negative health effects. This qualitative descriptive study aimed to identify factors that contribute to resilience among Black family caregivers. Using the rigorous and accelerated data reduction (RADaR) technique to complete thematic analysis, a team of five coders examined transcript data from three focus groups of Black current and former family caregivers (n = 17) of persons with dementia. We identified three primary factors that contributed to caregiver resilience including access to supportive environments, adaptability, and planning skills. Caregiver resistance to reporting depressive symptoms may be attributed to the strong Black woman schema. Findings from this study may be used to develop future culturally responsive interventions that support caregivers and promote family health.

Cognitive processing, resilience, and family functioning as contributors to posttraumatic growth in family caregivers of patients with Alzheimer’s disease

Objectives The present study examined the existence of posttraumatic growth (PTG) and its association with cognitive processing, resilience, and family functioning in family caregivers of patients with Alzheimer’s disease (AD). Method Family caregivers (N = 114) were surveyed using measures of cognitive processing, resilience, family functioning, and PTG. Data were analyzed using descriptive statistics, Pearson correlations, and multiple regression analyses. Results The average PTG score in the sample was 48.6 (SD = 18.7; range 14–105). Race, education level, severity of the patient’s AD, cognitive processing, resilience, and family functioning explained 25.8% of the variance in PTG (F [9, 95] = 5.025, p < 0.001). Race was significantly correlated with PTG; specifically, non-White caregivers reported higher PTG than White caregivers (p < 0.05). When controlling for race and education level, mild AD, intrusive rumination, and family satisfaction were significant predictors of PTG (p < 0.05). However, deliberate rumination, resilience, and family communication were not significant predictors PTG (p > 0.05). Conclusion These findings provide insight into factors that may influence the development of PTG in family caregivers of patients with AD. Results may inform intervention strategies to mitigate the negative consequences of caregiving and promote PTG in this caregiver population.

Online Parent-mediated Home-based Intervention for Children with Autism During COVID-19 Pandemic, Caregiver’s Experience

Background and Aims: During the COVID-19 pandemic, many caregivers of children with autism faced significant challenges when it came to providing interventions. Studies done so far have proven the efficacy of parent-mediated interventions in children with ASD. COVID pandemic forced to use online platforms for training parents in various parent-mediated interventions. Therefore, we conducted a study on the utility of online parent-mediated home-based intervention for children with autism. Methodology: This is a descriptive qualitative study design. Ten parents of children with autism were included in a series of online interactive meetings addressed by the disability experts. Sensory processing measures (SPM) and sensory profile questionnaires (SP) were used to prepare individualised home programmes. Ongoing support for implementing programme was provided via teleconsultation. Feedback was obtained 6 months after implementing parent-mediated interventions. The perceived utility of was analysed using qualitative data analysis. Results: Nearly all parents reported improvement in skills in language and play areas. 88% parents could administer the programme confidently. The overall teaching format was well-perceived by all parents. The home programme could be easily administered at home as reported by 85% of the parents. In the open-ended question, parents requested a need for more follow-up teleconsultation appointments. Conclusions: The COVID-19 pandemic necessitated significant adjustments for caregivers in providing interventions for children with autism. While it posed challenges, it also spurred innovation in parent-mediated interventions and highlighted the resilience and adaptability of caregivers in supporting their children during uncertain times.

The effect of structured psychoeducation for caregivers of ALS patients on perceived stress, psychological resilience and self-compassion.

Patients diagnosed with amyotrophic lateral sclerosis (ALS) become dependent on caregivers to meet their daily needs and perform personal care activities. For this reason, ALS is a disease that can challenge both the patient and the caregiver physically, mentally and socially. Supporting the caregiver indirectly affects the patient's quality of care and mental well-being. Therefore, this study aimed to determine the effect of a structured psychoeducation program on coping with stress, psychological resilience and self-compassion in caregivers of ALS patients. This quasi-experimental study with a pre-test-post-test control group was conducted with caregivers of 62 ALS patients in Türkiye. The study was conducted between July 2023 and February 2024. A psychoeducation program was applied to five different groups via zoom application for 6 weeks each. The survey form, Perceived Stress Scale, Brief Resilience Scale and Short Form of Self-Compassion Questionnaire were used as measurement tools. The chi-squared test and paired samples t-test were used to analyze the data. While there was no significant difference between the intervention group and the control group in the pre-test in terms of their mean scores on the coping with stress inventory, short psychological resilience scale and self-compassion scale, at the post-test, psychological resilience and self-compassion scores were significantly higher in the intervention group. This study revealed that psychoeducational programs that support caregivers are effective in increasing psychological resilience and self-compassion.

Care burden and associated factors among caregivers of patients with bipolar type I disorder

BackgroundFamily caregivers play a significant role in providing care for these people at home and need new evidence on the outcomes of their caregiving. Caregiving for people with chronic psychiatric disorders, especially Bipolar type I Disorder (BD-I), is a major challenge in the healthcare system. This study aimed to examine the relationship between caregiver burden, resilience and optimism in family caregivers of patients with BD-I.MethodsThis study used a cross-sectional design and involved 209 family caregivers of people with BD-I by convenience sampling method. Data were collected using the Zarit Burden Inventory (ZBI), Connor-Davidson Resilience Scale (CD-RISC), and Revised Life Orientation Test (LOT-R). The participants were selected from the list of family caregivers covered by the Ibn Sina Hospital’s health clinic in Mashhad, Iran. The data were analyzed using descriptive statistics and multiple regression analysis with a significance level of 0.05.ResultsThe average ages of the caregivers and their patients were 45.43 (13.34) and 36.7 (14.05), respectively. The average caregiver burden score was 41.92 (19.18), which was moderate (31 to 60). The predictors of caregiver burden in this study were caregiver-related factors such as optimism (p < 0.001, β = 0.25) and employment status (housewife: p = 0.038, β = 0.43; self-employed: p = 0.007, β = 0.12; retired: p < 0.001, β = 0.23), and patient-related factors such as the presence of psychotic symptoms (p < 0.001, β = 0.33), daily caregiving hours (p < 0.001, β = 0.16), history of suicide attempts (p = 0.035, β = 0.43), and alcohol consumption (p < 0.001, β = 0.85). These variables explained 58.3% of the variance in caregiver burden scores.ConclusionThe study concluded that family caregivers of people with BD-I had moderate levels of caregiver burden and low resilience, influenced by various factors related to themselves and their patients. Psychological education interventions within the framework of mental health support systems are recommended to reduce caregiver burden in these people.

Resilience of Family Caregivers of People With Dementia in South Korea: A Scoping Review.

Due to rapid increases in the number of Korean people with dementia, dementia has become a priority health issue in South Korea. Likewise, the well-being of family caregivers of people with dementia has also become an issue of concern. However, little is known about the resilience of Korean family caregivers because there is a lack of review studies from a Korean cultural perspective about the resilience of family caregivers of people with dementia. The purpose of this scoping review was to investigate quantitative studies related to resilience theories, measurement instruments, correlates and resilience interventions for family caregivers of people with dementia. This review was conducted according to the Joanna Briggs Institute based on Arksey and O'Malley. Nine databases were searched to retrieve evidence published in English or Korean between January 2000 and September 2022. Studies with a quantitative research design reporting the resilience of family caregivers of people with dementia based on a resilience theory framework were included. A total of 13 studies were included in this review. All studies used either a modified McCubbin and McCubbin's family stress, adjustment and adaptation model or Walsh's family resilience model. All resilience instruments were used without cross-cultural adaptation. Family adaptation, social support, life satisfaction, family (di)stress and caregiver burden were associated with resilience among family caregivers. A few family resilience-enhancing programmes showed a positive effect on caregiver resilience. This review noted that all the resilience measures documented in this study need to test for cultural adaptation in a Korean context. Further research is required to develop and implement family-based, culturally tailored interventions to effectively enhance Korean resilience for family caregivers of people with dementia. Gerontological nurses should include Korean family caregivers in their nursing care and assess whether family caregivers have depression or suicidal thoughts to promote better health outcomes for caregivers and their family members.

The relationship between socioeconomic status, medical accessibility, hope and psychological resilience of caregivers of children with chronic kidney disease in China: structural equation model

BackgroundChronic kidney disease (CKD) is the third most common cause of death after cancer and heart disease. The continuous treatment of children with CKD was greatly challenged during the COVID-19 pandemic, which significantly impacted the CKD children’s prognosis and the caregivers’ psychological status. However, the influence mechanism of socioeconomic status, medical delay duration, traffic pressure, and online consultation duration on caregivers’ hope and psychological resilience still lacks relevant evidence.MethodsThis study investigated the general social information, hope, and psychological resilience of 247 caregivers with CKD in 13 provinces of China in March 2020. Factor analysis and an exploratory Structural Equation Model ( SEM ) were used to find the best-fit model, and Bootstrapping was used to calculate the 95% CI of indirect effects.ResultsThe factor analysis obtained four common factors, namely, socioeconomic status (annual family income, education, and career stability), medical accessibility (online consultation duration, medical delay duration, and traffic pressure), hope (positive attitude, positive action, and intimate relationship) and psychological resilience (optimism, tenacity, and strength), with the cumulative contribution rate of 65.34%. Bootstrapping obtains the socioeconomic status β = 0.30 (95% CI [0.14, 0.47], P = 0.002), medical accessibility β = 0.31 (95% CI [0.12, 0.47], P = 0.002), and hope β = 0.40 (95% CI [0.27, 0.52], P = 0.002) has a direct impact on psychological resilience of CKD children caregivers, followed by medical accessibility β = 0.20 (95% CI [0.10, 0.38], P = 0.001) and hope β = 0.23 (95% CI [0.16, 0.32], P = 0.001) plays a mediating role between socioeconomic status and psychological resilience. The indirect impact effect β = 0.35 (95% CI [0.25, 0.50], P = 0.001) is greater than the direct impact effect β = 0.30 (95% CI [0.14, 0.47], P = 0.002).ConclusionsSufficient attention should still be given to children with immunodeficiency after the COVID-19 pandemic, such as CKD, to avoid infection of deadly. Secondly, the government should vigorously develop Primary medical institutions to ensure efficient treatment of severe patients in tertiary hospitals; Finally, the professional literacy of medical workers in remote diagnosis and treatment should be improved to enhance the country’s emergency response capacity for similar major public events and the requirements for normalised epidemic prevention and control.

The mediating roles of caregiver needs and caregiver readiness in the relation between family resilience and benefit finding in family caregivers of patients with stroke in China

ABSTRACT Objectives The purpose of this study was to assess the effects of family resilience, caregiver needs, and caregiver readiness on benefit finding for family caregivers of patients with stroke and to examine the mediating role of caregiver needs and caregiver readiness between family resilience and benefit finding. Methods In this cross-sectional study, convenience sampling was designed and used to recruit participants from three general hospitals in Jinan, Shandong Province, China, from February to September 2022, in which 340 participants completed the General Information Questionnaire, Chinese version of the Family Resilience Assessment Scale (C-FRAS), Caregiver Needs Assessment Scale (CNAS) Chinese version of the Caregiver Preparedness Scale (C-CPS), and Caregiver Benefit Finding Scale (CBFS). Model 6 in process version 4.0 was used to test the chain mediation model between family resilience and benefit finding for caregiver needs and caregiver readiness. Results Correlation analysis showed that benefit finding in family caregivers was positively associated with family resilience and caregiver readiness and negatively associated with caregiver needs; mediation model tests showed that the total indirect effect of family resilience on benefit finding was 0.163, with the specific mediating effects of caregiver needs and caregiver readiness accounting for 33.74% and 59.51%, and the chain mediating effect of both accounting for 6.75%. Conclusions Family resilience not only directly influences benefit finding for family caregivers but also indirectly affects benefit finding through caregiver needs and caregiver readiness. Caregiver needs and caregiver readiness have a mediating role between family resilience and benefit finding in family caregivers.

Emotional Regulation, Coping, and Resilience in Informal Caregivers: A Network Analysis Approach.

Public health emergencies such as the COVID-19 pandemic can further strain the mental health of informal caregivers who provide unpaid assistance to family members or friends who need support due to illness, disability, or aging. However, there is a lack of research exploring the resources and adaptive strategies that promote resilience in informal caregivers. This cross-sectional study used psychometric network analysis to model the interplay between coping strategies, emotion regulation, trait resilience, and anxiety and depression symptoms in 351 Italian informal caregivers. The results showed that coping through a positive attitude, emotional reappraisal, and trait resilience were the most central and interconnected nodes in the network. These adaptive strategies buffered against the negative impact of anxiety and depression symptoms, providing valuable insights into the mechanisms underlying resilience and well-being in informal caregivers. Clinically, it is crucial to assess and foster these resilience-promoting factors (positive attitude coping, cognitive reappraisal, and trait resilience) to help mitigate the mental health challenges faced by informal caregivers, especially in the context of public health crises such as the COVID-19 pandemic.

Development and psychometric properties of the Japanese version of Child and Youth Resilience Measure-Revised (CYRM-R) among Japanese youth

Objectives Resilience is the ability to navigate adversity and recover from challenging situations. Developing resilience at a young age promotes mental health and provides benefits throughout one's lifespan. Validated measures for assessing resilience at a young age are required in both clinical practice and epidemiological studies. The Child and Youth Resilience Measure-Revised (CYRM-R) is a tool used worldwide to assess resilience in children and young people. The objective of this study was to develop a Japanese version of the CYRM-R and investigate its psychometric properties.Methods Children in grades 5-9 were recruited via a two-stage cluster random sampling taken from the Japan Adolescent and Youth (JAY) Longitudinal Cohort Study. The participants completed the Japanese version of the CYRM-R . The CYRM-R consists of two subscales, personal resilience and caregiver resilience, with a total of 17 items. The linguistic validity of the Japanese version of the CYRM-R was ensured through translation and back-translation.Cronbach's alpha coefficients were examined for the total score and the two subscales to assess the internal consistency of the Japanese version of the CYRM-R scale. In addition, correlation coefficients of the subscales were calculated. For factorial validity, a confirmatory factor analysis was conducted on the same two-factor structure as in the original version to assess the model's goodness of fit. Results A total of 2,266 children (50.0% male) were included in the study. The overall Cronbach's alpha of the Japanese version of the CYRM-R obtained from this sample was 0.956; For the personal resilience subscale, Cronbach's alpha was 0.932; for the caregiver resilience subscale, it was 0.919. Significant positive correlations were also found between subscales (r = 0.827, p < 0.001). A confirmatory factor analysis was conducted using a two-factor structure for validity. The model fit was good (RMSEA = 0.085, SRMR = 0.041, CFI = 0.934).Conclusion The Japanese version of the CYRM-R maintained the same two-factor structure as the original version. The study findings showed that the Japanese version of the CYRM-R had adequate internal consistency and factorial validity for assessing resilience in children and youth. Therefore, this scale is a valuable tool for identifying individuals or groups at risk in terms of children's resilience and for evaluating the effectiveness of support and interventions.

Older caregivers’ depressive symptomatology over time: evidence from the Survey of Health, Ageing and Retirement in Europe

The prevalence of informal caregiving is increasing as populations across the world age. Caregiving has been found to be associated with poor mental health outcomes including depressive symptoms. The purpose of this study is to examine the mean trajectory of depressive symptomatology in older caregivers in a large European sample over an eight-year period, the effects of time-varying and time-invariant covariates on this trajectory, and the mean trajectory of depressive symptomatology according to pattern of caregiving. The results suggest that depressive symptoms in the full sample of caregivers follow a nonlinear trajectory characterized by an initial decrease which decelerates over time. Caregiver status and depressive symptoms were significantly associated such that depressive symptoms increased as a function of caregiver status. The trajectory in caregivers who report intermittent or consecutive occasions of caregiving remained stable over time. Significant associations were found between sociodemographic, health and caregiving characteristics and the initial levels and rates of change of these trajectories. While these results point to the resilience of caregivers, they also highlight the factors that are related to caregivers’ adaptation over time. This can help in identifying individuals who may require greater supports and, in turn, ensuring that caregivers preserve their well-being.

Experiences of caregivers of children with autism during the COVID-19 pandemic: A scoping review.

The coronavirus disease 2019 (COVID-19) outbreak has had a profoundly negative impact on people all over the world, particularly those with disabilities such as autism. However, there are gaps in research understanding the impact of COVID-19 on this population and the support required. To explore the evidence available on the impact of the COVID-19 pandemic on caregivers of children with autism. A scoping review methodology using the Arksey and O'Malley framework was employed. Five electronic databases from March 2020 to December 2022 were reviewed. Two thousand two hundred and six articles were retrieved with primary search terms: caregivers (population), autism (diagnosis) and COVID-19 (context). Following the screening of titles, abstracts and articles, 36 articles were included in the final review. Thematic and content qualitative analysis was completed. Preferred reporting items for systematic reviews and meta-analyses extension for scoping reviews (PRISMA-ScR) guided the reporting of the findings. Three main themes were identified: (1) caregiver's mental health and wellbeing, (2) response to remote health care and support and (3) caregiver resilience. The pandemic affected children with autism and their families regarding changes in routine, difficulties with support and emotional states. However, little research has been conducted on the impact in upper-middle-income countries such as South Africa.Contribution:The findings from this review carry practical implications that extend beyond the pandemic, such as political instability or natural disasters that may present similar stressors for children with autism and their families.

Use of Virtual Reality and Augmented Reality Technologies to Support Resilience and Skill-Building in Caregivers of Persons With Dementia: A Scoping Review.

Dementia presents a growing public health challenge with most affected individuals living at home, placing significant responsibility on their caregivers. Various interventions, from traditional support groups and education programs to emerging technologies, and more specifically virtual reality (VR) and augmented reality (AR), aim to enhance caregiver skills. While VR/AR shows promise in educating and fostering empathy among caregivers and healthcare professionals, its overall effectiveness and practicality in older adults and dementia care warrant further exploration. This review aimed to summarize currently available VR and AR interventions tailored for family caregivers of persons living with dementia (PLWD) in home or clinical settings, including their level of effectiveness, and to compile a summary of features that contributed to technology acceptance in family caregivers of PLWD. We conducted a systematic search in OVID PsychInfo, CINAHL, Google Scholar, and ERIC, as well as CADTH's Grey Matters, OpenGrey, National Technical Information Service, OAIster, and Health Quality Ontario, to comprehensively summarize the existing evidence underscoring the role of VR and AR in supporting education, resilience-building, and skills training for family caregivers of PLWD. The search terms were built with the assistance of a research librarian and involved synonyms for VR, AR, and dementia. Two screeners conducted a rigorous screening and data extraction to analyze and summarize findings. Studies were included if they focused on family caregivers engaging in interventions utilizing a three-dimensional VR environment and/or Metaverse for group learning in psychotherapeutic modalities such as psychoeducation, therapy, communication, and skill-building. The primary outcome of the studies was assessing measures of well-being (e.g., quality of life, communication, interaction, personhood) and learning outcomes for caregivers, while the secondary outcomes focused on identifying barriers and facilitators influencing the acceptability of VR/AR among dementia caregivers. Content analysis and descriptive statistics were used to summarize key trends in technology and evidence effectiveness and acceptability. Of the 1,641 articles found, 112 were included, with six articles meeting inclusion for analysis. Studies differed in duration and frequency of data collection, with interventions varying from single events to months-long programs, often employing home-based approaches using VR or online platforms. No study used AR. Usability issues and unclear benefits of use were identified as factors that hinder technology acceptance for dementia caregivers. However, technologies demonstrated engaging user experiences, fostering skill-building, confidence, and competence among caregivers. Positive psychological effects were also observed, facilitated by immersive VR and AR interventions, resulting in improved caregiver empathy and reduced stress, depression, and loneliness. VR and AR interventions for family caregivers ofPLWD show the potential to enhance empathy and skills and reduce stress. Challenges such as technological limitations and user inexperience issues persist. Home-based VR training aligns with caregiver comfort but lacks focus on financial aspects and cultural competencies. Co-design approaches offer solutions by addressing user concerns and promoting end-user engagement or empowerment.

DigiTRAC: Qualitative insights from knowledge users to inform the development of a Digital Toolkit for enhancing resilience among multiple sclerosis caregivers

BackgroundResilience-promoting resources are critically needed to support positive caregiving experiences for multiple sclerosis (MS) caregivers. A digital toolkit offers a flexible way to access and use evidence-based resources that align with MS caregivers’ interests and needs over time. ObjectiveWe explored the perspectives of key knowledge users regarding content areas, features, and other considerations to inform an MS caregiver resilience digital toolkit. MethodsTwenty-two individuals completed a demographic survey as part of this study: 11 MS family caregivers, 7 representatives of organizations providing support services for people with MS and/or caregivers, and 4 clinicians. We conducted nine semi-structured individual interviews and two focus groups. Data were analyzed using content analysis. ResultsParticipants recommended that a digital toolkit should include content focused on promoting MS caregivers’ understanding of the disease, its trajectory and available management options, and enhancing caregiving skills and caregivers’ ability to initiate and maintain behaviours to promote their own well-being. Features that allow for tracking and documenting care recipients’ and caregivers’ experiences, customization of engagement, and connectivity with other sources of support were also recommended. Participants suggested a digital toolkit should be delivered through an app with web browser capabilities accessible on smartphones, tablets, or laptops. They also acknowledged the need to consider how users’ previous technology experiences and issues related to accessibility, usability, privacy and security could influence toolkit usage. ConclusionThese findings will guide future toolkit development and evaluation. More broadly, this study joins the chorus of voices calling for critical attention to the well-being of MS family caregivers.

Resilience in family caregivers of Asian older people with dementia: An integrative review.

To identify factors associated with resilience in family caregivers of Asian older people with dementia based on Luthar and Cicchetti's definition of resilience. Integrative review of resilience in family caregivers of Asian older people with dementia reported by studies with quantitative and qualitative research designs. Databases used for the literature search included CINAHL, PubMed, EMBASE, PsycINFO and Google Scholar. A total of 565 potentially relevant studies published between January 1985 and March 2024 were screened, and 27 articles met the inclusion criteria. Family caregivers were most commonly adult children of care recipients, female and providing care in their home. Two themes emerged from the review: factors associated with adversity (dementia severity, caregiver role strain, stigma, family stress, female gender, low income and low education) and factors associated with positive adaptational outcomes (positive aspect of caregiving, social support and religiosity/spirituality). In our review of Asian research, four new factors-caregiver role strain, stigma, family stress and positive aspects of caregiving-emerged alongside those previously identified in Western studies. A paradigm shift was observed from a focus on factors associated with adversity to factors associated with positive adaptational outcomes, particularly after the issuance of the WHO's 2017 global action plan for dementia. However, a gap remains between WHO policy recommendations and actual research, with studies often neglecting to address gender and socioeconomic factors. The review findings will broaden healthcare providers' understanding of resilience in dementia caregivers and use them to develop comprehensive programmes aimed at reducing factors associated with adversity and enhancing those associated with positive adaptational outcomes. This approach can be customized to incorporate Asian cultural values, empowering caregivers to navigate challenges more effectively. This paper is an integrative review and does not include patient or public contributions.

Low resilience is associated with worse health-related quality of life in caregivers of service members and veterans with traumatic brain injury: a longitudinal study.

To examine [a] the association of caregiver health-related quality of life (HRQOL) and service member/veteran (SMV) neurobehavioral outcomes with caregiver resilience; [b] longitudinal change in resilience at the group and individual level; and [c] the magnitude of change at the individual level. Caregivers (N = 232) of SMVs with traumatic brain injury completed a resilience measure, and 18 caregiver HRQOL and SMV neurobehavioral outcome measures at a baseline evaluation and follow-up evaluation three years later. Caregivers were divided into two resilience groups at baseline and follow-up: [1] Low Resilience (≤ 45T, baseline n = 99, follow-up n = 93) and [2] High Resilience (> 45T, baseline n = 133, follow-up n = 139). At baseline and follow-up, significant effects were found between Low and High Resilience groups for the majority of outcome measures. There were no significant differences in resilience from baseline to follow-up at the group-mean level. At the individual level, caregivers were classified into four longitudinal resilience groups: [1] Persistently Low Resilience (Baseline + Follow-up = Low Resilience, n = 60), [2] Reduced Resilience (Baseline = High Resilience + Follow-up = Low Resilience, n = 33), [3] Improved Resilience (Baseline = Low Resilience + Follow-up = High Resilience, n = 39), and [4] Persistently High Resilience (Baseline + Follow-up = High Resilience, n = 100). From baseline to follow-up, approximately a third of the Reduced and Improved Resilience groups reported a meaningful change in resilience (≥ 10T). Nearly all of the Persistently High and Persistently Low Resilience groups did not report meaningful change in resilience (< 10T). Resilience was not a fixed state for all caregivers. Early intervention may stall the negative caregiving stress-health trajectory and improve caregiver resilience.

The effect of social activities on the alienation and family resilience of Chinese caregivers for children with autism: a latent class analysis.

Caregivers of children with autism spectrum disorder (ASD) in China often experience alienation due to societal stigma. While this alienation detrimentally impacts their mental well-being, family resilience serves as a protective factor. Previous research has predominantly examined the social support derived from social activities but has neglected to delve into the specific patterns of these activities. The primary objective of this study was twofold: firstly, to gain insights into the various social activities engaged in by caregivers of children with autism in China, and secondly, to ascertain the influence of these social activities on alienation and family resilience. Between June and August 2023, a cross-sectional survey was carried out across multiple cities in Jilin Province, aiming to gather data from a total of 205 Chinese caregivers of children with autism. Data collection was conducted through the utilization of a structured questionnaire. The assessment of social activity involved the completion of 12 questionnaires, while alienation was evaluated using the Generalized Alienation Scale (GSAS), and family resilience was gauged through the Chinese version of the Family Resilience Scale (FaRE). The classification of social activities was conducted through latent class analysis (LCA), while the impact of these social activities on alienation and family resilience was examined using linear regression analysis. The findings revealed that social activities can be categorized into five types (Low, Self-Recreation, Communication, Web Surfing, High). Communication social activities were found to reduce family resilience(β=.332, p<0.01), while high social activities were associated with reduced alienation(β=-.349, p<0.05) and increased family resilience(β=.417, p<0.01). Supporting these particular types of social activities has the potential to reduce alienation and bolster family resilience among caregivers for children with autism in China.