A stepped wedge cluster randomized trial to evaluate the effectiveness of a multisite family caregiver skills training program.

OBJECTIVE: To assess the effects of an evidence-based family caregiver training program (implementation of Helping Invested Families Improve Veteran Experiences Study [iHI-FIVES]) in the Veterans Affairs healthcare system on Veteran days not at home and family caregiver well-being. DATA SOURCES AND STUDY SETTING: Participants included Veterans referred to home- and community-based services with an identified caregiver across 8 medical centers and confirmed family caregivers of eligible Veterans. STUDY DESIGN: In a stepped wedge cluster randomized trial, sites were randomized to a 6-month time interval for starting iHI-FIVES and received standardized implementation support. The primary outcome, number of Veteran "days not at home," and secondary outcomes, changes over 3 months in measures of caregiver well-being, were compared between pre- and post-iHI-FIVES intervals using generalized linear models including covariates. DATA COLLECTION/EXTRACTION METHODS: Patient data were extracted from the electronic health record. Caregiver data were collected from 2 telephone-based surveys. PRINCIPAL FINDINGS: Overall, n = 898 eligible Veterans were identified across pre-iHI-FIVES (n = 327) and post-iHI-FIVES intervals (n = 571). Just under one fifth (17%) of Veterans in post-iHI-FIVES intervals had a caregiver enroll in iHI-FIVES. Veteran and caregiver demographics in pre-iHI-FIVES intervals were similar to those in post-iHI-FIVES intervals. In adjusted models, the estimated rate of days not at home over 6-months was 42% lower (rate ratio = 0.58 [95% confidence interval: 0.31-1.09; p = 0.09]) post-iHI-FIVES compared with pre-iHI-FIVES. The estimated mean days not at home over a 6-month period was 13.0 days pre-iHI-FIVES and 7.5 post-iHI-FIVES. There were no differences between pre- and post-iHI-FIVES in change over 3 months in caregiver well-being measures. CONCLUSIONS: Reducing days not at home is consistent with effectiveness because more time at home increases quality of life. In this study, after adjusting for Veteran characteristics, we did not find evidence that implementation of a caregiver training program yielded a reduction in Veteran's days not at home.

Reliability and validity of the Turkish version of the Family Caregiver Medication Administration Hassles Scale.

BACKGROUND: The Family Caregiver Medication Administration Hassles Scale (FCMAHS) was developed to evaluate the hassles and concerns experienced by family caregivers in medication administration. OBJECTIVE: This study aimed to evaluate the reliability and validity of the Turkish version of the Family Caregiver Medication Administration Hassles Scale (FCMAHS-TR). METHODS: The FCMAHS-TR was developed after translation, cultural adaptation, and a pilot study. The cross-sectional study was conducted among family caregivers (≥18 years) in community pharmacies. Test-retest reliability analysis, exploratory factor analysis (EFA), and confirmatory factor analysis (CFA) were performed. Hypothesis testing was used for the assessment of construct validity. RESULTS: The majority (68.7%) of the family caregivers were female (n = 470). In the test-retest reliability analysis (n = 30), the ICC value was 0.917 (P < 0.001). In EFA analysis (n = 251), the Kaiser‒Meyer‒Olkin (KMO) measure was 0.799, 62.6% of the total variance was explained by five factors including eighteen items, and Cronbach's alpha was 0.836. According to CFA (n = 219), the root mean square error of approximation (RMSEA) was 0.0654, and the comparative fit index (CFI) was 0.918. In construct validity, family caregivers with low reading ability of health-related materials and with high care burden had significantly higher median scores for all the factors of the FCMAHS-TR (P < 0.05 for all). CONCLUSIONS: The FCMAHS-TR can be used to evaluate the hassle and concerns experienced by family caregivers in medication administration. This scale can be used by healthcare professionals to identify family caregivers who need individualized interventions for medication administration hassles.

Is more care recipient time at home also a family caregiver-centered quality of life measure?

BACKGROUND: Time in healthcare facilities is associated with worse patient quality of life (QoL); however, impact on family caregiver QoL is unknown. We evaluate care recipient days not at home-days in the emergency department (ED), inpatient (IP) care, and post-acute care (PAC)-to understand how care recipient days not at home correspond to family caregiver QoL. METHODS: Secondary data were linked to care recipient utilization data. Elastic net machine learning models were used to evaluate the impact of a single day of utilization in each setting on binary QoL outcomes. We also compared composite weighted and unweighted "days not at home" variables. Two time periods, 6 and 18 months, were used to predict three caregiver QoL measures (self-rated health, depressive symptoms, and subjective burden). RESULTS: In the 6-month timeframe, a single day of ED utilization was associated with increased likelihood of poor QoL for all three assessed outcomes (range: 1.4%-3.2%). A day of PAC was associated to a modest degree with increased likelihood of caregiver burden (0.2%) and depressive symptoms (0.1%), with a slight protective effect for self-rated health (-0.1%). An IP day had a slight protective effect (-0.2 to -0.1%). At 18 months, ED and IP had similar, albeit more muted, relationships with caregiver burden and depressive symptoms. PAC had a slight protective effect for caregiver burden (-0.1%). Cumulative days in all settings combined generally was not associated with caregiver QoL. CONCLUSION: Whereas total care recipient time away from home had some negative spillovers to family caregivers, the countervailing effects of unique settings on caregiver QoL may mask net QoL effects. This finding limits the utility of a single care recipient home time measure as a valid caregiver-centered measure. Considering cumulative care recipient time in individual settings separately may be needed to reveal the true net effects on caregiver QoL.

Caregiving management needs and predictors for family caregivers of persons with dementia: a cross-sectional study.

BACKGROUND: Family caregivers of persons with dementia are faced with complex caregiving management needs. This study had two aims: (1) to identify caregiving management needs of family caregivers of persons with dementia and (2) identify any variables that might influence these needs. METHODS: This cross-sectional study recruited family caregivers of persons with dementia (N = 250) through referrals from clinicians at a dementia outpatient clinic in Northern Taiwan. Data were collected with a 32-item researcher-developed instrument, the Caregiving Management Needs Scale (CMNS), to identify management needs specific to family caregivers of persons with dementia. The CMNS was comprised of questions about the types of assistance or support family caregivers would like to receive to facilitate caregiving. RESULTS: CMNS scores indicated caregivers had moderate management needs. Caregivers of relatives with a moderate severity of dementia had significantly higher scores on the CMNS compared with caregivers of persons with very mild dementia (p < 0.01). Linear regression analysis indicated significant predictors of high caregiving management needs were caregivers who were female (p < 0.01), and persons with dementia with behavioral problems (p < 0.01), low scores for Activities of Daily Living (p < 0.01), regular medication adherence (p < 0.01), and use of long-term care services (p < 0.001) were significant (F[13, 236] = 7.12; p < 0.001; R2 = 28.2%). CONCLUSIONS: Understanding variables and predictors of caregiving management needs for family caregivers could reduce the complexity of caregiving. TRIAL REGISTRATION: ClinicalTrials.gov NCT05151185.

Improving the Well-Being of People With Advanced Cancer and Their Family Caregivers: Protocol for an Effectiveness-Implementation Trial of a Dyadic Digital Health Intervention (FOCUSau).

BACKGROUND: Advanced cancer significantly impacts patients' and family caregivers' quality of life. When patients and caregivers are supported concurrently as a dyad, the well-being of each person is optimized. Family, Outlook, Communication, Uncertainty, Symptom management (FOCUS) is a dyadic, psychoeducational intervention developed in the United States, shown to improve the well-being and quality of life of patients with advanced cancer and their primary caregivers. Originally, a nurse-delivered in-person intervention, FOCUS has been adapted into a self-administered web-based intervention for European delivery. OBJECTIVE: The aims of this study are to (1) adapt FOCUS to the Australian context (FOCUSau); (2) evaluate the effectiveness of FOCUSau in improving the emotional well-being and self-efficacy of patients with advanced cancer and their primary caregiver relative to usual care control group; (3) compare health care use between the intervention and control groups; and (4) assess the acceptability, feasibility, and scalability of FOCUSau in order to inform future maintainable implementation of the intervention within the Australian health care system. METHODS: FOCUS will be adapted prior to trial commencement, using an iterative stakeholder feedback process to create FOCUSau. To examine the efficacy and cost-effectiveness of FOCUSau and assess its acceptability, feasibility, and scalability, we will undertake a hybrid type 1 implementation study consisting of a phase 3 (clinical effectiveness) trial along with an observational implementation study. Participants will include patients with cancer who are older than 18 years, able to access the internet, and able to identify a primary support person or caregiver who can also be approached for participation. The sample size consists of 173 dyads in each arm (ie, 346 dyads in total). Patient-caregiver dyad data will be collected at 3 time points-baseline (T0) completed prerandomization; first follow-up (T1; N=346) at 12 weeks post baseline; and second follow-up (T2) at 24 weeks post baseline. RESULTS: The study was funded in March 2022. Recruitment commenced in July 2024. CONCLUSIONS: If shown to be effective, this intervention will improve the well-being of patients with advanced cancer and their family caregivers, regardless of their location or current level of health care support. TRIAL REGISTRATION: ClinicalTrials.gov NCT06082128; https://clinicaltrials.gov/study/NCT06082128. INTERNATIONAL REGISTERED REPORT IDENTIFIER (IRRID): PRR1-10.2196/55252.

Intergenerational ambivalence among families with a migrant background caring for older relatives.

Introduction: Europe's population is aging and becoming more ethnically diverse due to migration. The growing number of aging migrants has raised concerns about their future eldercare arrangements and their implications for both families and formal care services. Many older non-European migrants prefer family care over formal, long-term care facilities. Objective: The objective of this study is to explore the family caregiving arrangements for older Pakistani migrants from the Ahmadiyya community in Norway. Methods: This exploratory qualitative study recruited 19 women between 25 and 62 years of age who were family caregivers for older adults. Semi-structured individual (18) and group interviews (2) were conducted in Urdu and English. Findings: Our analysis reveals four main themes: the need to share caring responsibilities with family, balancing personal relations in managing care, lack of privacy while caregiving, and feelings of inadequacy. Conclusion: While rotational care for older family members offers benefits such as the sharing of responsibilities and more privacy, reliance solely on family care arrangements led to greater ambivalence among family caregivers and provoked doubts about the ability to continue caring for older relatives in the future. Our findings highlight the urgent need to establish modes of collaboration with formal care systems to ensure the support and well-being of both older adults and their family caregivers.

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 of PLWD 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.

Implementation outcomes from a multi-site stepped wedge cluster randomized family caregiver skills training trial.

OBJECTIVE: To assess whether a team collaboration strategy (CONNECT) improves implementation outcomes of a family caregiver skills training program (iHI-FIVES). DATA SOURCES AND STUDY SETTING: iHI-FIVES was delivered to caregivers at eight Veterans Affairs (VA) medical centers. Data sources were electronic health records, staff surveys, and interviews. STUDY DESIGN: In a stepped wedge cluster randomized trial, sites were randomized to a 6-month time interval start date for iHI-FIVES launch. Sites were then randomized 1:1 to either (i) CONNECT, a team collaboration training strategy plus Replicating Effective Programs (REP), brief technical support training for staff, or (ii) REP only (non-CONNECT arm). Implementation outcomes included reach (proportion of eligible caregivers enrolled) and fidelity (proportion of expected trainings delivered). Staff interviews and surveys assessed team function including communication, implementation experience, and their relation to CONNECT and iHI-FIVES implementation outcomes. DATA COLLECTION/EXTRACTION METHODS: The sample for assessing implementation outcomes included 571 Veterans referred to VA home- and community-based services and their family caregivers eligible for iHI-FIVES. Prior to iHI-FIVES launch, staff completed 65 surveys and 62 interviews. After the start of iHI-FIVES, staff completed 52 surveys and 38 interviews. Mixed methods evaluated reach and fidelity by arm. PRINCIPAL FINDINGS: Fidelity was high overall with 88% of expected iHI-FIVES trainings delivered, and higher among REP only (non-CONNECT) compared with CONNECT sites (95% vs. 80%). Reach was 18% (average proportion of reach across eight sites) and higher among non-CONNECT compared with CONNECT sites (22% vs. 14%). Qualitative interviews revealed strong leadership support at high-reach sites. CONNECT did not influence self-reported team function. CONCLUSIONS: A team collaboration strategy (CONNECT), added to REP, required more resources to implement iHI-FIVES than REP only and did not substantially enhance reach or fidelity. Leadership support was a key condition of implementation success and may be an important factor for improving iHI-FIVES reach with national expansion.

The CAREPAL-8: a short screening tool for multidimensional family caregiver burden in palliative care.

BACKGROUND: Family caregivers of terminally ill and dying people do not only experience varying levels but also different dimensions of caregiver-related strain and burden. The aim of the study was to develop a short multidimensional screening tool for the detection of burden in family caregivers in palliative care. METHODS: Family caregivers of cancer patients newly admitted to specialist inpatient palliative care (N = 232) completed questionnaires on psychological burden, quality of life, social support and need fulfillment. A latent class mixture model was used to identify discrete classes of family caregivers related to their multidimensional caregiver burden. Multinomial logistic regression analyses were performed to identify the most predictive items from a set of established questionnaires. RESULTS: Four latent classes of family caregivers were identified: Currently stable caregivers (37%), Caregivers with unmet needs (20%), Psychologically burdened caregivers (30%), and High-risk caregivers (13%). Each of these classes describes a different risk profile of multidimensional family caregiver burden, although family caregivers exhibit high levels of distress across all classes. From a set of 48 items, we identified eight items that predicted the class membership best. These items represent the items of the novel multidimensional screening tool: The 8-item Screening Tool for Family Caregiver Burden in Palliative Care (CAREPAL-8). Except for social support, the items maintained fidelity to the conceptualization of multidimensional caregiver burden used in this study. A preliminary classification system was developed, which has yet to be validated. CONCLUSIONS: This study represents the first step in the establishment of a practical, self-administered screening tool that might help healthcare providers to tailor caregiver care according to their burden in daily practice. Brevity of the 8-item tool might facilitate its use in routine clinical care.

Understanding the home hospice experience of Puerto Rican caregivers.

Hospice use among Hispanic Medicare beneficiaries has declined in the last few years, and Hispanic caregivers have reported insufficient support around the emotional and spiritual aspects of care. Understanding the home hospice experience of Puerto Rican (PR) caregivers can yield insight into ways to improve hospice participation and quality of care for the Hispanic population. This exploratory study utilizes qualitative methods to identify PR caregivers' experience in the setting of home hospice care. Data from interviews with eight (n=8) bereaved PR caregivers of patients who received home hospice care were qualitatively analyzed. Participants were mostly well-educated (n=6/8) female caregivers caring for their parent (n=7/8) with mean age of 57 [standard deviation (SD) =13] years. Emerging domains from the study included (I) symptom management; (II) cultural and religious values; and (III) interaction with hospice providers. Caregivers found managing patients' loss of appetite, pain, anxiety, and confusion to be challenging. They identified family-centered values and religious support as culturally important, which manifested as the need for frequent communication from hospice providers and increased support and education at the end-of-life. Culturally tailored interventions that focus on managing symptoms, tailoring care to support family-centered values, integrating religious officials representative of the patient's beliefs into the hospice team, and communicating effectively with providers may reduce the burden experienced by PR caregivers in home hospice and improve outcomes for patients and caregivers. Additional research will aid in the development of evidence-based intervention and policies urging healthcare providers to offer culturally appropriate hospice care and resources to this population.

Exploring expressed emotion and its influencing factors among family caregivers of dementia people: a 3-month study in Japan.

BACKGROUND: Family caregivers of dementia patients face significant challenges, including managing their own emotional responses. Understanding factors influencing expressed emotion (EE) is crucial for effective support interventions. The aim of this study was to explore and describe changes in EE among family caregivers of dementia and its associated factors at different time points over 3 months. METHODS: A 3-month observational study was conducted in Japan. We collected demographically detailed data on family caregivers currently providing care, including care burden, relationship closeness, and depression. We assessed EE using the validated Family Attitude Scale (FAS). After adjustment for multiple confounding factors, multivariate linear regression analysis was performed to assess factors affecting EE at various time points. Linear regression analysis with generalised estimating equations was used to assess associations between 3-month time-varying EE and burden, intimacy, and depression. RESULTS: Fifty-six family caregivers completed the study. Changes in FAS scores did not show statistical differences over 3 months. It is worth noting that the degree of relationship closeness and care burden are important influencing factors of EE in both cross-sectional analysis and longitudinal analysis. CONCLUSIONS: Early identification of risk factors can aid in developing interventions aimed at preventing high levels of EE in the dementia family, thereby mitigating their detrimental effects. Tailored interventions are essential to enhance caregiver well-being and cultivate positive caregiver-patient relationships.

Knowledge sharing in virtual communities of practice of family caregivers of people with Alzheimer's.

INTRODUCTION: Knowledge sharing can only happen in the context of a trusting and supportive environment, such as evolves in communities of practice and their virtual equivalent, virtual communities of practice. The main objective of this study was to understand knowledge sharing between participants in a virtual community of practice of caregivers of people with Alzheimer's. METHODS: The authors designed their own mobile application, and two virtual communities of practice were created independently and differentiated by how they were moderated: one by an expert caregiver and the other by three health professionals. 38 caregivers and four moderators were involved in the study, which ran between July 2017 and April 2018. A total of 1925 messages were exchanged within the two communities and used as data in the study. Message data was analysed using LINKS (Leveraging Internet Networks for knowledge sharing). RESULTS: Participants were more motivated to acquire knowledge related to caring for the person with Alzheimer's rather than caring for themselves. The purpose of the messages was to inform others about the sender and not to seek answers. It seems that the interaction was more to socialise and to feel heard, than to gain information. Face to face meetings appear to have accelerated community development. On nearly every parameter, behaviour was significantly different in the two communities, reflecting the importance of the character of the moderator. Caring for oneself was a much stronger theme in the community that included health professionals. Experiential knowledge sharing was particularly strong in the group led by a caregiver. DISCUSSION: Caregivers adapted the virtual community of practice to their own needs and mainly shared social knowledge. This focus on social support, which seems to be more valued by the caregivers than information about the disease, was not an expected pattern. Virtual communities of practice where peers count on each other, function more as a support group, whereas those moderated by health professionals function more as a place to go to acquire information. The level of interactivity points to such communities being important for knowledge sharing not mere knowledge transfer.

Burden of family caregivers in Alzheimer's disease: The role of caregivers' perception of cognitive impairment.

OBJECTIVES: This study examined the role of caregivers' perception of cognitive impairment in burden of family caregivers in Alzheimer's disease (AD). We hypothesized that the evaluation of cognitive impairment by family caregivers plays a pivotal role in burden. METHODS: The study included 110 dyads (person with AD and their caregiver) recruited from a Memory Unit in France. The cognitive impairment and depressive symptoms of person with AD were evaluated by a geriatrician using the Mini Mental State Examination (MMSE) and the Geriatric Depression Scale (GDS-15). Caregivers provided self-reports on the perception of cognitive impairment (IQCODE) of the care recipient, the caregiving burden (ZBI), depressive symptoms (GDS-15), and self-esteem (RSE). Descriptive analyses, comparison of different caregiver burden groups, and multinomial logistic regression analyses to understand correlates of caregiver burden were conducted with SPSS®, version 20. RESULTS: The findings show that the caregivers are on average 60 years old and the majority are women. They care for persons with AD, who are on average 82 years old and most of whom are women. Our results show that the duration of caregiving, depression of the caregiver, and caregivers' perception of cognitive impairment contribute significantly to burden of caregiver. DISCUSSION: This study shows that it is necessary to adopt the caregiver-centered approach to support the dyad. The role of the caregivers' perception of cognitive impairment in AD should be developed when supporting caregivers in suffering.

Latent profile analysis of benefit finding among family caregivers of Chinese older adults with disabilities and its influencing factors.

OBJECTIVES: The increase in the number of older adults with disability creates new challenges for caregivers. Benefit finding is the positive experience that caregivers get from caregiving, helping to reduce the negative impact on the caregiver's quality of life. However, there is less research on the positive experiences of family caregivers of older adults with disabilities. This study aimed to identify different benefit finding profiles among family caregivers of older adults with disabilities in China and to explore the sociodemographic characteristics and psychosocial factors with different benefit finding profiles. METHODS: A cross-sectional study of 218 family caregivers of Chinese older adults with disabilities using the sociodemographic questionnaire, the Family-APGAR, the Sense of Coherence-13, the Emotion Regulation Scale and Benefit Finding Scale from October 2022 to June 2023 in communities and hospitals of China, Shenyang, Liaoning Province. Latent profile analysis was used to analyze the latent profiles of benefit finding among family caregivers of Chinese older adults with disability. Multiple logistic regression was used to explore the predictors of different profiles. RESULTS: The benefit finding among family caregivers of Chinese older adults with disability can be classified into three potential profiles: Profile 1 - high-level benefit finding group (12.84%), Profile 2 - medium-level benefit finding group (43.58%), Profile 3 - low-level benefit finding group (43.58%). Working status, family function, and cognitive reappraisal of caregiver were predictors of different profiles. CONCLUSIONS: Nurses and community health care staffs should pay attention to the characteristics, family function, and emotion regulation strategies of family caregivers of older adults with different disability. Help family caregivers enhance family cohesion and cognitive reappraisal to improve positive experiences for caregivers in different profiles.

"We can't allow ourselves to fall ill": Health and (self-)discipline in female family caregivers from a gender perspective.

Research has shown significant differences and inequalities in the health of women and men who care for older dependent family members, with women having poorer health and suffering more from overload. Women internalize a cultural model of caregiving involving social norms whereby caring becomes a central dimension of gender-female identity, cutting across other aspects of life. This study takes a biopsychosocial approach, understanding gender as a determinant of health, in order to investigate the processes of subjectivation (and "technologies of the self") that mediate between the social organization of care and the health of women. A reflexive thematic analysis was undertaken in this qualitative study, following in-depth interviews with nineteen women caring for family members. The results show that women's biopsychosocial health is affected by the subjective positions they adopt in order to submit to or resist gender-based social norms about caring in three dimensions: their relationship to their own health problems, their experience of vulnerability, and the place of love and morality in relation to being a caregiver. Those (inter)subjective processes reflect the neoliberal update of the gendered social organization of care and the way its social discourses, such as free choice and unstinting performance, relate to female caregivers' biopsychosocial health. It is necessary to deconstruct this traditional model and the self-regulated processes as recast by the neoliberal order for the sake of women's health, to relieve them of this burden. It is essential to commit to sociopolitical articulations aimed at shared responsibility in care.

Exploring Varied Experiences of Three Stakeholders of the COVID-19 Pandemic.

Rapid communication describes the multifaceted impact of the COVID-19 pandemic on three stakeholder groups: family caregivers of COVID-19 patients, frontline health workers attending to COVID-19 patients, and hospital-discharged COVID-19 patients. This communication aims to provide a nuanced understanding of the challenges faced by each group and their experience during the critical period of the pandemic. Three descriptive qualitative studies were conducted between July 2020 and November 2021, using individual in-depth interviews and focus group discussions. Participants were selected purposively. The findings of the three studies were collated in this rapid communication to compare the unique perspectives of the different stakeholders. Thematic analysis led to categories of Varied challenges and family realities, Accepting risks, Support, and Unexpected positive outcomes. These findings emphasise the need for context-specific dissemination of public health messages, particularly in densely populated urban areas. Policymakers are urged to consider the diverse challenges faced by different groups when formulating pandemic response strategies. Overall, this study provides valuable insights into the intricacies of navigating public health crises, fostering a deeper understanding of human connections and resilience during challenging times.

Family Caregivers' Perceptions and Experiences of Supporting Older People to Cope With Loneliness: A Qualitative Interview Study.

Loneliness has become a significant public health issue among community-dwelling older adults particularly those with multimorbidity. Family caregivers are crucial care resources for dependent older adults living in the community before transitioning to institutional services. However, understanding of their perceptions in supporting older adults with multimorbidity to cope with loneliness is limited. This qualitative study aimed to elucidate on the experiences of caring and explore the experiences and perceptions of family caregivers in supporting older community-dwelling adults with multimorbidity to cope with loneliness. Eleven family caregivers, aged 51-93 years old, with at least 2 years of caregiving experience were purposively recruited and interviewed individually. The Consolidated Criteria for Reporting Qualitative Research (COREQ) checklist was utilised to report the study. Three key themes were generated from the inductive analysis: (1) recognising older adults' loneliness through the expression of unusual emotions, behaviour/s, social network alteration and speech; (2) variations in perceptions and responses to loneliness among different family caregiving relationships; and (3) challenges in addressing loneliness. Positive feedback from cared-for older adults was appreciated by their family caregivers which in turn motivated further actions to alleviate loneliness. The findings emphasised the importance of developing specific patients and family caregivers centred interventions, such as communication skills training to enhance effective communications. Cultural values and norms of individuals should be respected in those interventions, ensuring that emotional expression is facilitated in a comfortable way for both older patients and family caregivers.

Career Disruption and Employment Status of Korean Family Caregivers of Older Adults Using Home-Based Care.

This study utilized nationally approved data from the 2022 Long-Term Care Survey of Korea to examine the factors associated with career disruptions and employment status among family caregivers of home-based care recipients. Descriptive statistics, chi-square tests, one-way ANOVA, and multinomial logistic regression analysis were employed to address the research questions. The results indicated that 19.39% of family caregivers of home-based care recipients experienced career disruptions due to informal caregiving. Demographic factors such as gender, age of family caregivers, and their relationship with care recipients predicted their employment status. Gender was a significant explanatory factor, as daughters/daughters-in-law were more likely to be in insecure employment positions than sons. Lower household income and older age were also associated with employment insecurity. Recommendations include coverage expansion, family support programs, and pension credit for family caregivers to meet the needs of care recipients and their families.

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

BACKGROUND: Resilience-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. OBJECTIVE: We explored the perspectives of key knowledge users regarding content areas, features, and other considerations to inform an MS caregiver resilience digital toolkit. METHODS: Twenty-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. RESULTS: Participants 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. CONCLUSION: These 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.

Design of Digital Mental Health Platforms for Family Member Cocompletion: Scoping Review.

BACKGROUND: The COVID-19 pandemic placed an additional mental health burden on individuals and families, resulting in widespread service access problems. Digital mental health interventions suggest promise for improved accessibility. Recent reviews have shown emerging evidence for individual use and early evidence for multiusers. However, attrition rates remain high for digital mental health interventions, and additional complexities exist when engaging multiple family members together. OBJECTIVE: As such, this scoping review aims to detail the reported evidence for digital mental health interventions designed for family use with a focus on the build and design characteristics that promote accessibility and engagement and enable cocompletion by families. METHODS: A systematic literature search of MEDLINE, Embase, PsycINFO, Web of Science, and CINAHL databases was conducted for articles published in the English language from January 2002 to March 2024. Eligible records included empirical studies of digital platforms containing some elements designed for cocompletion by related people as well as some components intended to be completed without therapist engagement. Platforms were included in cases in which clinical evidence had been documented. RESULTS: Of the 9527 papers reviewed, 85 (0.89%) met the eligibility criteria. A total of 24 unique platforms designed for co-use by related parties were identified. Relationships between participants included couples, parent-child dyads, family caregiver-care recipient dyads, and families. Common platform features included the delivery of content via structured interventions with no to minimal tailoring or personalization offered. Some interventions provided live contact with therapists. User engagement indicators and findings varied and included user experience, satisfaction, completion rates, and feasibility. Our findings are more remarkable for what was absent in the literature than what was present. Contrary to expectations, few studies reported any design and build characteristics that enabled coparticipation. No studies reported on platform features for enabling cocompletion or considerations for ensuring individual privacy and safety. None examined platform build or design characteristics as moderators of intervention effect, and none offered a formative evaluation of the platform itself. CONCLUSIONS: In this early era of digital mental health platform design, this novel review demonstrates a striking absence of information about design elements associated with the successful engagement of multiple related users in any aspect of a therapeutic process. There remains a large gap in the literature detailing and evaluating platform design, highlighting a significant opportunity for future cross-disciplinary research. This review details the incentive for undertaking such research; suggests design considerations when building digital mental health platforms for use by families; and offers recommendations for future development, including platform co-design and formative evaluation.