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Background: The study aimed to investigate the efficacy of a 12-week physical activity intervention for caregivers of patients with schizophrenia. Method: Family caregivers of patients with schizophrenia were recruited and randomized into either a physical activity group (n = 31) or a control group (n = 31). The 12-week "Physical Activity Program" consisted of 10 minutes of warm-up activities as the initial segment, 20 minutes of rhythmic exercises as the activity segment, 10 minutes of cool-down exercises as the final segment, and 40 minutes of free walking. The physical activity program was designed to accommodate the ergonomics and physiological structure of the caregiver. The program consisted of 12 sessions. The Zarit Caregiver Burden Scale and the Beck Depression Inventory were used to the physical activity and control groups before the program's implementation. Results: A total of 62 caregivers were randomized to the intervention (n = 31) or control group (n = 31). Postintervention measurement was completed by 61 caregivers, and all the caregivers completed the intervention. Mean scores of Zarit Caregiver Burden Scale score and Beck Depression Inventory score in the physical activity group of caregivers at postintervention, significantly reduced at <.05 level than their mean baseline scores. Conclusions: Engagement in a 12-week physical activity intervention can improve the perceived burden of caregiving and symptoms of depression. Future research should examine with larger sample groups, carry out interventions, and apply the physical activity intervention by targeting caregivers, along with different interventions. [ABSTRACT FROM AUTHOR]

Informed by the social ecological model, which asserts that health behaviors and beliefs are the result of multiple levels of influence, we examined factors related to parents' support for in-school COVID-19 mitigation strategies. Using data from a survey of 567 parents/caregivers of public elementary and middle school students in eight Maryland counties, we employed regression models to examine relationships between parent-, child-, family-, school-, and community-level factors and acceptability of mitigation strategies. Acceptance of COVID-19 mitigation strategies was positively correlated with child- and family-level factors, including child racial identity (parents of Black children were more accepting than those of White children, odds ratio [ OR ]: 2.5, 95% confidence interval [CI] = [1.5, 4.1]), parent receipt of the COVID-19 vaccine (OR : 2.4, 95% CI = [1.5, 3.7]), and parent Democrat or Independent political affiliation (compared with Republican affiliation, OR : 4.2, 95% CI = [2.6, 6.7]; OR : 2.2, 95%CI = [1.3, 3.8], respectively). Acceptance was also positively associated with parents' perceptions of their school's mitigation approach, including higher school mitigation score, indicating more intensive mitigation policies (OR : 1.1, 95% CI = [1.0, 1.1]), better school communication about COVID-19 (OR : 1.7, 95% CI = [1.4, 1.9]) and better school capacity to address COVID-19 (OR : 1.9, 95% CI = [1.5, 2.4]). Community-level factors were not associated with acceptance. Child- and parent-level factors identified suggest potential groups for messaging regarding mitigation strategies. School-level factors may play an important role in parents' acceptance of in-school mitigation strategies. Schools' capacity to address public health threats may offer an underappreciated and modifiable setting for disseminating and reinforcing public health guidance. [ABSTRACT FROM AUTHOR]

Mental health carers are crucial in improving the physical health outcomes of people diagnosed with a mental illness (hereafter referred to as consumers). The long-term and multifaceted mental and physical health support carers provide to consumers can contribute to caregiver burden. Consequently, carers advocate for coordinated and integrated physical healthcare to improve the physical health outcomes of consumers and alleviate caregiver burden. The aim of this qualitative exploratory study is to explore carers' perceptions and experiences with the Physical Health Nurse Consultant role. Semi-structured interviews with nine carers nominated by consumers were conducted. Interviews were transcribed and reflexively thematically analysed. Three main themes were identified: (i) Therapeutic relationship s were a catalyst for health behaviour change; (ii) Overt and covert positive changes were observed by carer and (iii) Cares' involvement in integrated mental health and physical health care. Nine carers who were nominated by consumers to be involved in their physical healthcare planning, preferred to adopt a supporting role as this prevented or reduced caregiver burden. The findings support the adoption and continuation of the Physical Health Nurse Consultant role to facilitate positive physical health outcomes for consumers and a reduction in caregiving burden. The benefits of the Physical Health Nurse Consultant provide a compelling argument to embed the role in routine practice. Mental healthcare services should advocate for continued funding and career development for such positions to provide long term benefits for consumers and carers. Future research is required to explore carer and consumer involvement in co-producing future and localised iterations of the Physical Health Nurse Consultant role. This research should also measure the outputs and outcomes of co-production to clarify how the process worked in practice. [ABSTRACT FROM AUTHOR]

Purpose: This study aimed to explore the impact of informal care on the health of older adults, providing data to inform the development of informal care systems and social support policies for long‐term care services in developing countries. Methods: Based on data from the 2018 Chinese Longitudinal Healthy Longevity Survey (CLHLS), this study employed the Propensity Score Matching (PSM) method to empirically analyze the effects of informal care on older adults' self‐rated health, depression, and anxiety. Results: A total of 4790 older adults were included in the study sample, with 3194 receiving informal care and 1596 not receiving informal care. The results indicated that older adults who received informal care reported better self‐rated health and had lower depression and anxiety scores compared to those who did not receive informal care. Among different groups, the positive effects of informal care on physical and mental health were more significant for very old adults, rural residents, and those without a spouse. Informal care had a greater positive impact on the physical health of women and the mental health of men. Conclusion: Government agencies should promote effective coordination between informal and formal care through financial support, awareness campaigns, and policy incentives. This will help to accelerate the improvement of the long‐term care system and effectively meet the long‐term care needs of older adults. [ABSTRACT FROM AUTHOR]

Background: India has a significant prevalence of people with intellectual disabilities. Despite their higher prevalence, they receive poor support. Therefore, this review aims to explore the experiences of family carers in providing care for children with intellectual disabilities in India. Methods: A qualitative evidence synthesis was undertaken, searching databases such as MEDLINE, CINAHL, Web of Science, and PsycInfo up to October 2023. Grey literature was also searched for unpublished studies, with two reviewers assessing methodological quality. Eleven eligible studies, mostly qualitative in design, were included in the review. The data synthesis followed a thematic approach. Results: The synthesis found five themes representing family carers' experiences and perspectives. These were 'resilience and acceptance', 'parental response', 'care dynamic', 'preparing for transition to adulthood' and 'parental advocacy'. Conclusion: Family carers hold diverse views, while almost all consider providing care complex and challenging, with few positive experiences. [ABSTRACT FROM AUTHOR]

Aim: To identify current key areas for nursing research in Switzerland, we revised the Swiss Research Agenda for Nursing (SRAN) initially published in 2008. Background: By developing a research agenda, nursing researchers internationally prioritize and cluster relevant topics within the research community. The process should be collaborative and systematic to provide credible information for decisionmakers in health care research, policy, and practice. Sources of Evidence: After a participative, systematic, and critical evaluation within and outside of the Swiss Association for Nursing Science, the updated SRAN 2019–2029 defines four research priorities (new models of care, nursing care interventions, work and care environment, and quality of care and patient safety) and four transversal themes (organization of research, research methodologies, research in health care policy and public health perspectives). Conclusion: Adding to other national nursing research agendas, the categories are organized in a framework of key research priorities and transversal themes. They relate to the importance of global and local foci of research as well as challenges in health care services and policy systems. The agenda is an important prerequisite for enhancing the influence of nursing research in Switzerland and provides guidance for the next decade. Implications for Nursing Practice: The revised agenda ensures that research projects target key knowledge gaps and the discipline's core questions in respective countries. Implications for Health Policy: Nursing research should inform and influence health policy on all institutional and political levels. Therefore, the integration of public health perspectives in research is one of the most important new aspects of SRAN 2019–2029. [ABSTRACT FROM AUTHOR]

Background: Wandering behaviour affects a significant portion of dementia patients, ranging from 15% to 80%, presenting a serious safety concern and adding to caregivers' burden. Recent studies emphasise the effectiveness of non‐pharmacological interventions over pharmacological ones due to their minimal side effects. Consequently, in current literature there has been a surge of interest in exploring non‐pharmacological methods for managing wandering. Purpose: This integrative literature review aims to deepen comprehension of wandering behaviour, presents recent studies on non‐pharmacological approaches, and inspires further research in this field. Methods: Electronic data collection spanned from 2019 to 2024, sourcing 20 relevant articles from PubMed and Scopus databases using search terms such as 'dementia', 'Alzheimer's disease', 'wandering', and 'management'. A thematic analysis methodology was employed to identify non‐pharmacological treatment themes for managing wandering. This approach involves scrutinising and synthesising themes within the dataset. Qualitative data analysis focused on significant phrases and keywords, grouping them to derive relevant themes. Results: Recent literature extensively explores non‐pharmacological methods for managing wandering. These include understanding behaviours, identifying and targeting high‐risk groups, facilitating safe wandering, addressing environmental factors, promoting exercise and activity, and offering caregiver support. Conclusions: This study significantly advances understanding of wandering behaviour and highlights recent research on non‐pharmacological interventions. The findings suggest the potential for providing safe and effective treatment to wandering dementia patients, thereby alleviating stress for both patients and caregivers. [ABSTRACT FROM AUTHOR]

Oncology patients face challenges beyond those directly affecting their cancer management. Guided personal narrative programs have been shown to help patients with chronic conditions and life-framing events. Few such narrative programs have been reported for cancer patients or analyzed for their impact on patient experience. We established our Life Story Narrative Program, modeled on the United States Veterans Affairs' "My Life, My Story" for outpatient oncology patients in our hospital's cancer center. Press Ganey™ patient experience scores from program participants were compared retrospectively with scores from patients who were not participants. Over an eight-month period, we invited 30 cancer center outpatients to participate. Twenty-seven individuals accepted, and 18 had their stories edited, approved, and scanned into their electronic health record. Cohort matching yielded a control arm consisting of 255 responses from 48 surveys, while the intervention arm consisted of 68 responses from 12 surveys. 78.4% of responses from the control arm were rated 5 compared with 100% in the intervention arm. The mean Press Ganey™ score response in the control arm was 4.71 compared with 5.00 from the intervention arm. Wilcoxon U value was 10,540 with p <.001. An outpatient narrative medicine program for cancer patients to tell their life stories can easily be organized. Patients were willing to participate, enrollment was brisk, and the use of resources was limited. Although our sample size was small, participation in our Life Story Narrative Pilot Program resulted in a statistically significant improvement in Press Ganey™ scores. [ABSTRACT FROM AUTHOR]

Background: Prenatal depression is associated with adverse health outcomes for both mothers and their children. The worldwide COVID-19 pandemic has presented new risks and challenges for expectant mothers. The aims of the study were to investigate the underlying mechanism between COVID-19 risk perception of Chinese pregnant women and their prenatal depressive symptoms and potential protective factors such as family sense of coherence (FSOC). Method: A total of 181 Chinese pregnant women (Mage = 31.40 years, SD = 3.67, ranged from 23 to 43) participated in an online survey from April 22 to May 16, 2020. Risk perception and negative emotions (fear and anxiety) related with COVID-19, FSOC, and prenatal depressive symptoms were assessed. Results: The experience of maternal COVID-19 related negative emotion fully mediated the positive relationship between COVID-19 risk perception and prenatal depressive symptoms of pregnant women (β = 0.12, 95% CI [0.06, 0.19]). When confronting COVID-19 related fear and anxiety, expectant mothers from higher coherent families experienced a significantly lower level of prenatal depressive symptoms. Conclusions: Contextual negative emotional experience was demonstrated to explain how risk perception impacts depressive symptoms during severe public health crisis for pregnant women. FSOC may be a psychological resource protecting pregnant women from experiencing adverse psychological outcomes during COVID-19 pandemic. Significance: What is already known on this subject?: Robust evidence showed that maternal perinatal mental health was largely harmed during the early stage of COVID-19 pandemic in China. COVID-19 risk perception was one of the significant risk factors for psychological distress. What this study adds?: COVID-19 related negative emotions might serve as a possible mechanism linking risk perception and mental health in the context of COVID-19 pandemic. And the FSOC might serve as a protective factor that buffers the expectant mothers from antenatal depression. These findings clarified mental health vulnerabilities and potential opportunities of intervention for pregnant women during public health crises. [ABSTRACT FROM AUTHOR]

This mixed‐methods study evaluated a peer‐led support group for ED caregivers; the Eating Disorders Families Australia strive support groups. Quantitatively, 110 past or current strive attendees completed an online survey assessing their own and their care recipients' demographic profiles, strive's impact on caregiving experiences, and caregivers' psychological distress, burden, caregiving skills and self‐efficacy. Qualitative assessment comprised open‐ended survey questions about caregivers' strive experiences, reinforced by in‐depth focus group assessment of nine participants. Quantitative analyses revealed that participants felt more confident and supported, and less isolated in their caregiving since attending strive. Caregivers displayed mid‐range psychological distress and caregiver burden, and moderate caregiver skills and self‐efficacy. Qualitatively, the most helpful aspects of strive were the shared experience among participants, education, and support. The most difficult elements were emotional distress and overly dominant members. Reflections discussed the necessity of caregiver support and factors impacting strive attendance. Participants recommended resuming face‐to‐face contact and differentiating groups based on participant characteristics (e.g. care recipients' age/stage of illness). The current findings provide support for the importance and overall positive contribution of support groups led by caregivers, such as strive. Highlights: The Strive participants presented with increased caregiver confidence and support, reduced isolation, despite mid‐range psychological distress and moderate caregiver skills/efficacy.Caregivers value shared experiences, education, and support within the strive programme.Emotional distress and group dynamics posed hurdles in strive, highlighting the need for improved support structures. [ABSTRACT FROM AUTHOR]

Background: Informal caregivers are an essential part of health and social care systems worldwide. As such, they may need professional support. Aim: The aim of this study was to describe informal caregivers' experiences and need for support from a tailored primary health care (PHC) unit. Methods: This is a qualitative descriptive study using data collected from five semi‐structured focus group discussions with a purposeful sample of 16 informal caregivers of older relatives. Respondents were recruited from a tailored PHC unit for people aged 75 years or older in a region in central Sweden. The data were analysed by qualitative content analysis with an abductive approach, based on the principles of the patient‐ and family‐centred care framework. Results: The overarching theme was 'Striving for partnership'. The findings indicate that informal caregivers to some extent felt supported by the healthcare professionals. However, the caregivers expressed a need to be further acknowledged by the professionals in order to participate in the care of their older relatives in the way they wanted. Moreover, insufficient information regarding the older adult's health condition and care provided by the professionals had a negative impact on the caregiver's participation in care. Conclusions: Informal caregivers have unmet needs for support and strive for a partnership with the PHC professionals. PHC professionals should be more attentive and invite informal caregivers to participate in the care of the older adult in order to meet their support needs and build an equal partnership. The patient‐ and family‐centred care framework may be of guidance when providing care for older adults in a PHC context. [ABSTRACT FROM AUTHOR]

Background: Individuals with spinal cord injuries (SCIs) are at an increased risk of poor oral health compared to the general population. However, little is known about the related barriers and facilitators experienced by these individuals within the hospital setting. Objectives: Understand the oral health knowledge, attitudes and practices of people with SCIs, barriers and facilitators to managing their oral health, and recommendations to improve oral care at acute/rehabilitation hospital settings. Methods: Semi‐structured interviews were conducted with 11 participants, from a major metropolitan hospital in Sydney, Australia. The interviews were thematically analysed. Results: Three themes were constructed. Participants believed that the onus was on them to manage their oral health. Individuals also had limited knowledge of its importance to general health, and placed a lower priority on oral health compared to other aspects of health. All participants identified a combination of factors, such as cost, time, resources and prior negative experiences, that contributed to the neglect of their oral care. Participants also discussed the need of support from the multidisciplinary team and family/carers to facilitate oral care and identified various appropriate oral health education formats. Conclusion: This study highlighted some areas where oral health knowledge among people with SCIs could be improved. It also identified the need for oral health training for the multidisciplinary team, as well as carers, to better integrate oral care during rehabilitation in the hospital. The development of oral health interventions would need to utilise a co‐design approach to best support clients and their carers to facilitate oral care self‐management. [ABSTRACT FROM AUTHOR]

Objective: The population of women ages 50 years and older living with HIV is increasing. Yet, little is known about the care networks that older women living with HIV (OWLH) use to manage their health. The goal of this study was to explore the caregiving and care receiving relationships among OWLH and how these relationships impact HIV management. Methods: OWLH aged 50 years and older were recruited from clinics and community-based organizations across the U.S. We conducted semi-structured, in-depth phone interviews and performed content and thematic analysis on transcripts. Results: Participants (N = 23) were on average 60 years old and had been living with HIV for an average of 23.7 years. Participants 1) relied on diverse care networks; 2) were caregivers for grandchildren and parents; 3) had pride and joy in being caregivers; and 4) were highly proactive in their own HIV management. Care networks promoted self-love and acceptance. However, concerns about aging with HIV were still highly prevalent. Conclusion: Being a caregiver and care recipient are sources of meaning and strength to help OWLH manage HIV. Public health programs should consider engaging both OWLH and their care networks in healthcare discussions and educational efforts. [ABSTRACT FROM AUTHOR]

Background: The human immunodeficiency virus (HIV) and acquired immunodeficiency deficiency syndrome (AIDS) epidemic have left an overwhelming impact on communities worldwide, particularly in Sub-Saharan Africa, where its effects on family structures are particularly pronounced. Caregivers of HIV/AIDS orphans encounter challenges in fulfilling their caring duties. Consequently, they rely on the outreach team leaders (OTLs) for support to care for HIV/AIDS orphans. Aim: This study aimed to explore and describe support provided by OTLs to caregivers of HIV/AIDS orphans in the North West Province of South Africa. Methods: The exploratory, descriptive, and contextual design meaning the study was conducted was in the contexts where caregivers of HIV/AIDS orphans reside. The study was conducted in five local municipalities in the Ngaka Modiri Molema district of the North West Province of South Africa. Ward-based outreach nurses were participants in the study. Semi-structured focus group interviews were used for data collection. Thematic analysis was used to analyze data. Throughout the study, ethical principles were adhered to. The study also adhered to four trustworthiness principles: credibility, confirmability, transferability, and dependability. Results: Three main themes emerged from this study: the conduction of home visits to caregivers of HIV/AIDS orphans, the coordination of a multidisciplinary team for support, and the facilitation of support groups. Conclusions: This study revealed that that caregivers of children orphaned by HIV/AIDS benefitted from the support provided by OTLs in the North West province of South Africa. The support provided by OTLs harnessed positive relationship between caregivers and children orphaned by HIV/AIDS. [ABSTRACT FROM AUTHOR]

Introduction: Unpaid care work is mainly performed by women, whose mental health is more affected by caregiving burden and work-family conflict compared to men. COVID-19 containment measures may have exacerbated existing gender inequalities in both unpaid care work and adverse mental health outcomes. This scoping review provides an overview of recent evidence on the impact of COVID-19 containment measures on unpaid care work and mental health for subgroups of caregivers at the intersection of gender and other social differences (e.g., ethnicity, age, class) in Europe. Methods and analysis: Our study was informed and guided by Arksey and O'Malley's methodological framework. We searched six academic databases (Medline, PsycInfo, Scopus, CINAHL, Social Sciences Abstracts, Sociological Abstracts, ASSIA) and hand-searched the reference lists of selected articles to identify relevant peer-reviewed research articles published between 1 March 2020 and 7 September 2022. In addition, we conducted a grey literature search using Google Scholar and a targeted hand search on known international and European websites. We included studies that reported gender-disaggregated results on unpaid care work and mental health in the context of COVID-19 containment measures in Europe. Two reviewers independently screened all abstracts and full texts for eligibility and extracted the relevant data. The results were synthesised narratively. Results and discussion: Our results suggest a greater gender gap in unpaid care work division and, to a lesser extent, in mental health, which is unfavourable towards women and mothers. Despite this, we see a break in the traditional division of childcare, with fathers taking on a greater role in family work, which makes us optimistic about the division of care work in the post-COVID-19 era. This research also shows that among European women, population groups often understudied, such as women who are single parents, disabled or of colour, have the highest increase in unpaid care work and greatest deterioration in wellbeing. [ABSTRACT FROM AUTHOR]

Kinship care and child fostering are a common practice in certain parts of Africa. This narrative review seeks to explore and thematically code the contextual circumstances in which children leave their natal homes and are fostered across Africa and the corresponding outcomes for these children. It draws on case studies from Cameroon, the Democratic Republic of the Congo, Ethiopia, Kenya, and Namibia and other countries across the region to illustrate the diversity and cultural importance of kinship care and child fostering. These countries were selected based on their inclusion in the Thrive by Five International Program, a child rearing program promoting social, emotional, and cognitive development of children from birth to age five. The importance of kinship care and child fostering is also reinforced by outcomes from codesign workshops conducted for the Thrive by Five International Program in which parents, caregivers, and subject matter experts discussed their perspectives on child rearing practices and the challenges faced by caregivers in their home countries. The paper highlights the need to support kinship and foster caregivers in Africa with culturally adapted and place‐based child rearing programs to help ensure fostered children reach their full developmental potential. [ABSTRACT FROM AUTHOR]

Background Methods Results Conclusions Unmet need for home and community‐based services (HCBS) may disparately impact older adults from racial and ethnic minoritized groups. We examined racial and ethnic differences in unmet need for HCBS among consumers ≥65 years using publicly funded HCBS.We analyzed the National Core Indicators‐Aging and Disability survey data (2015–2019) from 21,739 community‐dwelling HCBS consumers aged ≥65 years in 23 participating states. Outcome measures included self‐reported unmet need in six service types (i.e., personal care, homemaker/chore, delivered meals, adult day services, transportation, and caregiver support). Racial and ethnic groups included non‐Hispanic Black, Asian, non‐Hispanic White, Hispanic, and multiracial groups. Logistic regression models examined associations between race and ethnicity and unmet need, adjusting for sociodemographic, health, and HCBS program (i.e., Medicaid, Older Americans Act [OAA], Program for All‐Inclusive Care for the Elderly [PACE]) characteristics, and use of specific service types.Among 21,739 respondents, 23.3% were Black, 3.4% were Asian, 10.8% were Hispanic, 58.8% were non‐Hispanic White, and 3.7% were multiracial or identified with other races/ethnicities. Asian and Black consumers had higher odds of reporting unmet need in personal care than White consumers (adjusted odds ratio [aOR], 1.45, p value < 0.01; and aOR, 1.25, p < 0.001, respectively). Asian and Black consumers had significantly higher odds of unmet need in adult day services versus White consumers (aOR, 1.94, p < 0.001 and aOR, 1.39, p < 0.001, respectively). Black consumers had higher odds of unmet need versus non‐Hispanic White consumers in meal delivery and caregiver support services (aOR, 1.29; p < 0.01; and aOR 1.26, p < 0.05, respectively). Race and ethnicity were not significantly associated with experiencing unmet need for homemaker/chore or transportation services.Future research should identify driving forces in disparities in unmet need to develop culturally appropriate solutions. [ABSTRACT FROM AUTHOR]

Background: Dementia is a leading factor in the institutionalization of older adults. Informal caregivers' desire to institutionalize (DI) their care recipient with dementia (PwD) is a primary predictor of institutionalization. This study aims to develop a prediction model for caregivers' DI by mining data from an eHealth platform in a high-prevalence dementia country. Methods: Cross-sectional data were collected from caregivers registering on isupport-portugal.pt. One hundred and four caregivers completed the Desire to Institutionalize Scale (DIS) and were grouped into DI (DIS score ≥ 1) and no DI (DIS score = 0). Participants completed a comprehensive set of sociodemographic, clinical, and psychosocial measures, pertaining to the caregiver and the PwD, which were accounted as model predictors. The selected model was a classification tree, enabling the visualization of rules for predictions. Results: Caregivers, mostly female (82.5%), offspring of the PwD (70.2), employed (65.4%), and highly educated (M 15 years of schooling), provided intensive care (Mdn 24 h. week) over a median course of 2.8 years. Two-thirds (66.3%) endorsed at least one item on the DIS (DI group). The model, with caregivers' perceived stress as the root of the classification tree (split at 28.5 points on the Zarit Burden Interview) and including the ages of caregivers and PwD (split at 46 and 88 years, respectively), as well as cohabitation, employed five rules to predict DI. Caregivers scoring 28.5 and above on burden and caring for PwD under 88 are more prone to DI than those caring for older PwD (rules 1–2), suggesting the influence of expectations on caregiving duration. The model demonstrated high accuracy (0.83, 95%CI 0.75, 0.89), sensitivity (0.88, 95%CI 0.81, 0.95), and good specificity (0.71, 95%CI 0.56, 0.86). Conclusions: This study distilled a comprehensive range of modifiable and non-modifiable variables into a simplified, interpretable, and accurate model, particularly useful at identifying caregivers with actual DI. Considering the nature of variables within the prediction rules, this model holds promise for application to other existing datasets and as a proxy for actual institutionalization. Predicting the institutional placement of PwD is crucial for intervening on modifiable factors as caregiver burden, and for care planning and financing. [ABSTRACT FROM AUTHOR]

Background: Despite the key role family caregivers play in the US healthcare system, they are not systematically identified and tracked, limiting our knowledge about this important group. Objective: Our objective was to identify caregiver characteristics and barriers to service delivery in a primarily rural state. Methods: As part of a quality improvement project, a cross-sectional online survey was fielded in clinical and community settings. Participants included 85 self-identified adult caregivers of another adult with an illness, condition, or disability from within a US state healthcare network. Descriptive analyses were conducted, and inferential statistics were used to compare urban versus rural respondents and older versus younger respondents. Results: Caregivers were responsible for a wide range of care activities and particularly older caregivers spent a significant amount of time providing care. Older caregivers also reported significantly lower levels of burden compared to younger caregivers, yet both groups had clinically high levels on average. Caregivers reported receiving helpful emotional support, but needed more tangible support and were limited by availability and cost. Conclusions: There is a need to fund comprehensive caregiver programing and address caregivers' own social and physical health needs to reduce caregiver burden. [ABSTRACT FROM AUTHOR]

Introduction Design Methods Results Conclusion Clinical Relevance The effectiveness of health interventions delivered via a combination of in‐person and electronic social networking services for caregivers of stroke survivors remains uncertain. This study evaluates the feasibility of implementing educational and peer support programs for these caregivers through such platforms.Quasi‐experimental design.This study included 105 caregiver–survivor dyads, with 54 dyads allocated to the intervention group and the remaining 51 to the control group. The LINE intervention comprised a combination of in‐person and electronic social networking services including stroke and rehabilitation education, problem‐solving skills training, long‐term care information support, and 24‐h peer and professional support for caregivers. The outcomes were assessed at baseline, after 1 month, and after 3 months, and encompassed caregivers' care burden, depressive symptoms, perceived social support, and quality of life, as well as the rehabilitation adherence and depressive symptoms of stroke survivors. Generalized estimating equations were used to examine group differences. The data were collected between August 2021 and October 2022.The average age of the caregivers was 48.3 years. Caregivers in the intervention group reported reduced care burdens and enhanced perceptions of social support and quality of life as compared to those in the control group. Additionally, stroke survivors in the intervention group were less likely to exhibit high‐risk depressive symptoms.Delivering a stroke caregiver support intervention via in‐person and electronic social networking services, such as LINE, effectively reduced the care burden for caregivers of stroke survivors. Additionally, it enhanced caregivers' perceived social support and quality of life.This study demonstrated that caregiver education and peer support programs administered through a combination of in‐person and electronic social networking services can serve as an effective support system for the psychosocial health of stroke caregivers. These findings support the integration of such interventions into standard clinical practice by healthcare providers or governmental bodies. [ABSTRACT FROM AUTHOR]

Long-term Care Insurance (LTCI), providing care services and economic compensation to older adults with activity limitations, plays a crucial role in addressing the care needs of older adults and easing the burden on family caregivers. This article is based on the 2011–2018 China Health and Retirement Longitudinal Study (CHARLS) and uses China’s LTCI pilot program as a quasi-experiment to examine the impact of LTCI on older adults’ care patterns in China. It employs a staggered difference-in-differences (staggered DID) methodology to model the economic support, living arrangements and care, and spiritual comfort provided to older adults. Results indicate that LTCI significantly enhances the economic and emotional independence of older adults. On the one hand, LTCI effectively decreases the economic and emotional dependence of older adults on their children. On the other hand, LTCI raises the likelihood that older adults rely on social institutions and personnel for care. Additionally, LTCI is associated with achieving higher life satisfaction. Interestingly, the impact of LTCI varies significantly across sub-samples of different types of older adults and different policy regulations. Overall, findings indicate that LTCI shifts older adults’ care patterns from family to socialized care, thereby reducing children’s caregiving burden. [ABSTRACT FROM AUTHOR]

Background Methods Results Conclusions 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.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.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.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. [ABSTRACT FROM AUTHOR]

Background Aims Methods Results Conclusion Impact Reporting Method Implications for practice The family caregivers as primary caregivers play a crucial role regarding the care of cancer patients. As defined in the literature, the care burden encompasses the negative objective and subjective outcomes including psychological and physical health problems, economic and social issues, deterioration of family relationships and feelings of loss of control that arise from caregiving responsibilities.This study aims to assess the care burden and to evaluate the associated factors among family caregivers of cancer patients receiving treatment at a state hospital in Türkiye.This cross‐sectional study was conducted with the family caregivers of patients undergoing treatment in the radiation oncology department of a state hospital in Türkiye. The study population consisted of 350 individuals, with a participation rate of 80%. Participants were administered a questionnaire concerning determining daily living activities and identifying the caregiving burden through their socio‐demographic characteristics.The care burden among primary family caregivers while the delivery of health services was severe for 85.1% of them. The average ZBI score of caregivers was 55.92 ± 14.58. It was clarified that family caregivers' burden was influenced by several factors, including the duration of caregiving, difficulties experienced while caring for the patient, and the negative impact on their daily roles.Our study's findings indicate the need for health professionals to support caregivers of cancer patients while over half of the caregivers were identified as having a severe level of caregiving burden. It is important to raise awareness among nurses and the oncology team with a holistic approach. In the delivery of health services, caregivers' needs should be identified first, support mechanisms should be activated and interventions should be made to meet these needs.This study's findings highlight the need to identify and problems faced by family members during caregiving. This is important for sustainable and cost‐effective holistic care.The results of this study are reported based on the guidelines of The Strengthening the Reporting of Observational Studies (cohort, case–control studies, cross‐sectional studies) in Epidemiology (STROBE).Our study's findings indicate the need for health professionals to support caregivers of cancer patients. It is important to raise awareness among nurses and the oncology team with a holistic approach. In the delivery of health services, caregivers' needs should be identified first, support mechanisms should be activated and interventions should be made to meet these needs. [ABSTRACT FROM AUTHOR]

Introduction: The use of technology to deliver psychosocial interventions such as cognitive stimulation therapy (CST) to individuals with dementia may improve their cognition and quality of life. Objectives: This study aimed to investigate the participants' experiences with digital CST in Jordanian care homes, as well as the acceptability of the digital CST intervention in Jordanian care homes and recommendations for refinement. Methods: A qualitative study design and semistructured interviews were used to obtain data from 20 people with dementia and 12 care home staff who were purposefully selected. Data were analyzed thematically and comparatively to explore the experiences and outcomes of the participants. This study was conducted from February to April 2023. Results: Analysis of care home staff and residents' experiences revealed seven major themes: (a) personalized support and engagement, (b) positive impact on quality of life, (c) engagement and meaningful activities, (d) adaptable format and accessibility, (e) emotional connection and empowerment, (f) caregiver involvement and support, and (g) suggestions for improvement. The study's findings emphasize the necessity of tailored support, individualized difficulty levels, individualized material selection, emotional support, greater social connection, and caregiver participation in digital CST for people with dementia. Conclusion: Using digital touchscreen technology to deliver CST content has shown potential improvements, making interventions simpler for staff and more beneficial for individuals with dementia, thereby enhancing cognition and quality of life. [ABSTRACT FROM AUTHOR]

Background: This study conducted in-depth interviews to explore the factors that influence the adoption of fall detection technology among older adults and their families, providing a valuable evaluation framework for healthcare providers in the field of fall detection, with the ultimate goal of assisting older adults immediately and effectively when falls occur. Methods: The method employed a qualitative approach, utilizing semi-structured interviews with 30 older adults and 29 families, focusing on their perspectives and expectations of fall detection technology. Purposive sampling ensured representation from older adults with conditions such as Parkinson's, dementia, and stroke. Results: The results reveal key considerations influencing the adoption of fall-detection devices, including health factors, reliance on human care, personal comfort, awareness of market alternatives, attitude towards technology, financial concerns, and expectations for fall detection technology. Conclusions: This study identifies seven key factors influencing the adoption of fall detection technology among older adults and their families. The conclusion highlights the need to address these factors to encourage adoption, advocating for user-centered, safe, and affordable technology. This research provides valuable insights for the development of fall detection technology, aiming to enhance the safety of older adults and reduce the caregiving burden. [ABSTRACT FROM AUTHOR]

Introduction: Parents vary in their gradual adaptation to the demands of caring for an autistic child. Their experiences can be positive, negative, or a combination of both, depending on the severity of the cases and various personal and social factors. Cross-cultural comparisons can aid in understanding how contextual factors, such as the availability of social and health services, and cultural factors, such as family relationships and the distribution of care burden, may influence the caregiving experience. However, there is a limited amount of cross-cultural research on this topic, which is almost exclusively quantitative. Aims and methods: From an ecocultural perspective, our interview-based study aimed to explore the experiences of Australian (15) and Italian (11) parents of autistic children living in their respective countries. Results: The analysis identified three main themes. Life through autism, autism through life: coexisting with an unexpected life partner, Parenting autistic children: reorganization of parents' subjectivity and familiar dynamics, and The unseen side of disability: autism communities between inclusion and segregation. Discussion: Our comparative approach reveals both commonalities and differences between the two groups of participants. The similarities support features previously identified in the literature: the emotional and physical burden on parents and the positive impact on parental identity. The differences relate to the diagnostic process, interactions with health professionals, the impact of autism on family dynamics and parental perspectives, and the role assigned to siblings. Despite facing similar challenges, these differences reveal how Italian and Australian parents articulate different understandings linked to social and cultural differences. [ABSTRACT FROM AUTHOR]

Background: Family caregivers, mostly parents, are greatly involved in the care of their children with end stage kidney disease (ESKD) globally. Yet, the experiences of these caregivers and the demands placed on them by the caregiving role have not been explored or documented in Ghana. This study explored how caregiving affects the psychological, physical, social, and spiritual well-being of family caregivers of children with end stage kidney disease (ESKD) in Ghana. Methods: A phenomenological approach with the purposive sampling technique was used to gather data from 12 family caregivers of children with ESKD at a pediatric renal unit in Ghana. A semi-structured interview guide was constructed based on the constructs of the City of Hope Quality of Life (QoL) Family Caregiver Model and the research objectives. Colaizzi's thematic analysis approach was utilized to analyze data for this study. Themes were organized under the domains of the chosen model, and a new theme outside these domains was also generated. Results: The majority of the family caregivers experienced anxiety, fear, uncertainty, and hopelessness in response to the children's diagnosis and care. The thought of the possibility of the children dying was deeply traumatizing for our participants. Most participants reported bodily pains and physical ailments because of lifting and caring for the children. Financial constraint was also a key issue for all the family caregivers. Most of them received diverse support from their families and loved ones. Due to the demanding nature of the care, most family caregivers had to change or quit their jobs. They coped with the challenges through prayers, participating in religious activities, and being hopeful in God for healing. Conclusion: All the family caregivers had their psychological well-being compromised as a result of the challenges they encountered physically, socially, and spiritually. Continuous psychosocial support, funding support, and review of policies on leave for civil workers with children diagnosed with ESKD are urgently required. [ABSTRACT FROM AUTHOR]

Many people living with dementia and unpaid carers experience inequalities in care related to challenges in receiving a correct diagnosis, care and support. Whilst complexities of the evidence are well recognised including barriers in receiving a diagnosis or post-diagnostic care, no coherent model has captured the far-reaching types and levels of inequalities to date. Building on the established Dahlgren & Whitehead Rainbow model of health determinants, this paper introduces the new Dementia Inequalities model. The Dementia Inequalities model, similar to the original general rainbow model, categorises determinants of health and well-being in dementia into three layers: (1) Individual; (2) Social and community networks; and (3) Society and infrastructure. Each layer comprises of general determinants, which have been identified in the original model but also may be different in dementia, such as age (specifically referring to young- versus late-onset dementia) and ethnicity, as well as new dementia-specific determinants, such as rare dementia subtype, having an unpaid carer, and knowledge about dementia in the health and social care workforce. Each layer and its individual determinants are discussed referring to existing research and evidence syntheses in the field, arguing for the need of this new model. A total of 48 people with lived, caring, and professional experiences of dementia have been consulted in the process of the development of this model. The Dementia Inequalities model provides a coherent, evidence-based overview of inequalities in dementia diagnosis and care and can be used in health and social care, as well as in commissioning of care services, to support people living with dementia and their unpaid carers better and try and create more equity in diagnosis and care. [ABSTRACT FROM AUTHOR]

Background: Tuberculosis (TB) is a leading cause of death among children living with HIV (CLHIV). Isoniazid preventive therapy (IPT) reduces the incidence of TB by 70% and mortality by 50% among CLHIV. However, in most developing countries including Tanzania, the uptake of IPT is suboptimal, below the 90% WHO-global uptake target. We assessed the factors associated with IPT uptake among CLHIV in Mwanza region, Tanzania. Methods: This was a multicenter facility-based cross-sectional study among CLHIV aged 1 to 10 years in seven districts of Mwanza region, Tanzania from 1st November 2021 to 20th January 2022. Data were collected using a structured interview-administered questionnaire including information on children and caregivers' demographics, caregivers' health related information and children's clinical information. Our outcome variable was uptake of IPT, defined as initiation on IPT either during the time of the study or within past three years before this study We conducted modified Poisson regression to assess the association between IPT uptake and selected exposures in Stata version 15.0. Results: A total of 415 CLHIV were enrolled, the median age of the children was 7 years (Interquartile range: 5–8). The uptake of IPT was 91% (n = 377). The majority of children's caregivers were HIV positive (86%, n = 387) and were aware about IPT (63.6%, n = 264). Factors associated with IPT uptake included; having an employed caregiver [Adjusted Prevalence Ratio (aPR): 1.06 95% Confidence Interval (CI): 1.00-1.13] and attending the ART clinic every month [aPR: 1.00; 95% CI: 0.87–1.00]. Conclusions: The uptake of IPT uptake among CLHIV in Mwanza, Tanzania exceeds the global WHO-target of ≥ 90%. Monthly ART clinic visits could be essential in promoting IPT uptake among CLHIV. [ABSTRACT FROM AUTHOR]

Purpose Methods Results Conclusion Level of Evidence To evaluate the burden experienced by primary informal caregivers of patients who have undergone hip arthroscopy and to identify factors that predict increased caregiver burden.A cross‐sectional study was conducted at a single academic hospital centre, enroling caregivers of patients who underwent hip arthroscopy between November 2018 and November 2023. Caregiver burden was assessed using the Caregiver Burden Inventory (CBI) survey. Multivariable linear regression models were used to identify predictors of caregiver burden, with the global CBI score serving as the primary outcome measure. Secondarily, open‐ended survey questions were analyzed qualitatively to elucidate specific challenges and facilitators of caregiving, as reported by the caregivers themselves.The study involved 99 eligible caregivers (mean [standard deviation] age; 47 [11] years), 58% were female, and 85% were relatives of the patient. The median global CBI score was 13.0 (interquartile range: 8.0–22.4), indicating a moderate burden. Regression analyses demonstrated that younger caregiver age and a higher number of caregiving tasks were significant predictors of increased global burden. Additionally, nonweightbearing status of patients, female gender of caregivers and working full‐time statistically significantly increased specific dimensions of caregiver burden.This study highlights the meaningful burden faced by caregivers of patients undergoing hip arthroscopy, despite its minimally invasive nature and outpatient setting. Identified risk factors such as younger caregiver age, female gender of the caregiver, nonweight‐bearing status and increased caregiving tasks suggest targeted areas for intervention. The qualitative analysis revealed that caregivers struggle with time management and physical and emotional strain, yet better communication and practical support from healthcare teams could help to alleviate these challenges.Level IV, prognostic study. [ABSTRACT FROM AUTHOR]

Purpose: To explore the literature on carer-supported home-based exercise programs for people after stroke, as a form of physical activity. The review focus was to examine the training carers receive, the content of programs, and investigate the physical activity levels and functional mobility of people after stroke. Materials and Methods: A scoping review was undertaken, guided by Joanna Briggs Institute methodology. The concept of home-based carer-supported exercise, in people after stroke, was searched across five databases. Outcomes of interest were physical activity levels and functional mobility. Results: We screened 2285 references and included 10 studies: one systematic review, five randomised controlled trials, one trial with non-equivalent control, and four uncontrolled studies. Carer training ranged from one to twelve sessions. Exercise interventions commonly including walking, other whole body functional exercises and balance activities. In eight studies interventions were in addition to standard care. Five studies reported significant between-group differences for functional mobility, favouring the intervention. One study reported physical activity levels. Conclusion: There was large variation in the volume and content of training provided to carers. Physical activity levels were infrequently objectively reported. Future studies should include greater details on their protocols to allow for replication and implementation into clinical practice. IMPLICATIONS FOR REHABILITATION: Carer-supported home-based exercises may improve functional mobility once home after a stroke. The optimal length, content, and model of delivery of carer training, so carers can provide better targeted home-based exercise support to people after stroke, is not known. Better monitoring of participation in home-based exercise and reporting of short and long-term physical activity is needed. [ABSTRACT FROM AUTHOR]

Objective Methods Results Conclusion This study explores the process through which informal caregivers, particularly spouses, construct their identity within the context of caregiving for individuals with dementia. Despite extensive research in psychology aimed at defining caregiving (e.g. tasks, consequences), few informal caregivers identify themselves as such. For instance, the affective bond shared between caregivers and care‐recipients often imbues caregiving responsibilities with a sense of “naturalness,” especially if the care‐recipient is a spouse.To investigate the nature of caregiver identity construction, eight semi‐structured interviews were conducted with spouse caregivers of dementia patients. The collected data underwent interpretative phenomenological analysis (IPA).Three interconnected themes emerged from the analysis: (1) Perceiving changes in my partner, which involves recognising alterations in the care‐receiver's characteristics due to dementia; (2) Processing changes, encompassing the experience of grieving losses and reminiscing about the past; and (3) Perceiving changes in myself, referring to the acknowledgement of personal changes due to caregiving.The study emphasises the dynamic and ongoing nature of caregiver identity construction, which begins with the early recognition of changes in the care‐receiver. Interestingly, spouse caregivers oscillate between their identity as a spouse and caregiver, influenced by how they process changes undergone by their partner. Contrasting with previous theories on caregivers' identity, our results focus of caregivers' perceptions rather than their relationship with the care‐recipient or caregiving tasks. [ABSTRACT FROM AUTHOR]

Research has evidenced that purpose in life helps to minimise the strains of providing informal care to a significant other, but little is known about whether this psychological resource influences the paths from stressors to the health outcomes of family caregiving and through which mechanisms it can exert this protective effect. This study aimed to explore the moderating role of purpose in life on the (mediated through adaptive coping) relationship between caregiver burden and psychological distress in haemodialysis caregivers. A cross‐sectional study was conducted with a convenience sample of family caregivers (n = 173; M = 55.9, SD = 15.6 years old) of adults undergoing haemodialysis. A moderated‐mediation model was computed to explore the interaction effects of purpose in life on the path between burden and distress, having adaptive coping behaviours as parallel mediators. Results showed that purpose in life had a buffering effect on the mediated (through acceptance coping) relationship between burden and distress (index of partial moderated‐mediation: bsimple = −0.029, 95% bootstrap confidence interval (CI) [‐0.070, −0.002]), and that this conditional effect was lowest at high levels of the moderator (at +1SD: bsimple = 0.038, SE = 0.026, 95% bootstrap CI [0.001, 0.098]). Use of emotional support (F(1,159) = 4.395, p = 0.038) and positive reframing (F(1,159) = 5.648, p = 0.019) also mediated this path. This study expands knowledge about the modifiable internal resources through which purpose in life can help promote psychosocial adjustment to the haemodialysis caregiving process. Mental health promotion initiatives aimed at this population need to consider combining different intervention approaches to foster purpose in life and train adaptive (and flexible) coping skills. [ABSTRACT FROM AUTHOR]

Introduction: Caregivers of autistic persons often face "courtesy stigma," a phenomenon by which caregivers experience stigma because of their association with a person whose disability may be stigmatized. Understanding the repercussions of this stigma is crucial not only for caregivers' mental health but also for the quality of care provided to their dependent. This study aimed to explore courtesy stigma among caregivers of autistic persons in Quebec, examining its prevalence and impact in order to identify groups that are particularly susceptible to negative outcomes. Methods: This study used a cross-sectional online survey methodology employing quota sampling to collect responses from 194 participants. Data were collected using a computer-assisted web interview (CAWI) platform. The impact of courtesy stigma was measured in terms of care burden, mental health, and overall well-being of caregivers. Results: The findings revealed that caregivers frequently experience rejection, isolation, and work-related challenges. Notably, caregivers' health was below average with the lowest reported health outcomes in Quebec. The caregivers who are the most vulnerable to negative outcomes included female caregivers, those aged 45 or older, financially strained households, caregivers of children requiring elevated levels of support, caregivers who isolated due to their autistic dependents, and those who experienced stigmatization directed at themselves or their children in the form of rejection. Interestingly, 60% of respondents reported that the caregiving burden was "not at all" to "somewhat" difficult, raising questions about factors that may mitigate caregiving challenges over time. Conclusion: Negative outcomes from courtesy stigma vary depending on certain risk factors and individual characteristic. This study underscores the need for targeted public policies and interventions, particularly for those at a higher risk of experiencing the negative effects of courtesy stigma on the burden of care, overall health, and mental health. By tailoring resources and support for these priority groups, we can better address the challenges faced by families of autistic persons. [ABSTRACT FROM AUTHOR]

A fast-ageing population implies an upsurge in demand for caregiving. We examine the causal effect of informal caregiving on caregivers' realized and forgone healthcare utilization based on data from China. Accounting for the potential endogeneity in caregiving, we find that caregivers not only use more outpatient care and self-treatment, but are also more likely to forgo necessary inpatient care. Caregiving also increases the out-of-pocket expenditures of all types of healthcare. Further mechanism analysis shows that caregiving worsens caregivers' health and takes up time and economic resources for healthcare utilization, which causes the coexistence of increased realized and forgone healthcare use. Heterogeneity analysis reveals that those with tighter budgets and higher marginal costs for healthcare (e.g. rural or less educated caregivers) tend to bear larger increases in caregiving-driven health costs. Our results shed light on the overlooked benefit of long-term care policies if accounting for the spillover effects of informal care provision on caregivers' healthcare use, particularly for disadvantaged groups. [ABSTRACT FROM AUTHOR]

Background: Heart failure (HF) is a debilitating disease with worsening symptoms and family caregiving burden. HF affects more than 8 million Americans. West Virginia has the highest HF death rate in the U.S. and limited healthcare services. This study tested whether the family HF palliative and end-of-life care intervention (FamPALcare) improved patient and caregiver outcomes at 3- and 6-month study endpoints. Methods: This study used a randomized controlled trial design. Patients with HF and their caregivers were randomly assigned together to the intervention (n = 21) or control (n = 18) group. The intervention included five telephone coaching sessions on the HF home, palliative, and end-of-life care. The outcome data collected at baseline and at 3 and 6 months were from the patients' (a) HF-related health status and depression/anxiety scale scores; and from caregivers' (b) caregiving burden and depression/anxiety scale scores; and (c) anonymous ratings on the 11-item FamPALcare helpfulness scale, completed by the intervention participants. Results: The mean age of the patients was 65.66 (SD = 13.72) years, and 67% were White males. The mean age of the caregivers was 62.05 (SD = 13.14) years, and 77% were White females. Compared to the controls, patients in the intervention group had significantly greater scores for HF-related health status (p <.05) and lower depression/anxiety scores at 6 months, the study endpoint. The family caregivers in the intervention group had significantly lower scores on caregiving burden (p <.05) and depression/anxiety (p <.01) at 3 months. The mean helpfulness rating was M = 4.46 out of 5 (SD = 0.49). Conclusions: The FamPALcare intervention was found to be effective at improving patient HF-related health status and reducing caregiver burden and improving both patient and caregiver depression and anxiety scores. The FamPALcare HF intervention was found feasible and consistently delivered (fidelity). The FamPALcare intervention's cost-effectiveness and helpfulness ratings information will be used to plan for subsequent clinical trials. Trial registration: ClinicalTrials.gov NCT04153890, Registered on 4 November 2019, https://clinicaltrials.gov/ct2/show/NCT04153890. [ABSTRACT FROM AUTHOR]

Background: Stroke is the leading cause of long-term disability impacting patients' daily lives. Adequate and ongoing rehabilitation is a necessity. Due to disability problems, rehabilitation in the health care system is limited. Traditional medicine has been promoted in Thailand for stroke rehabilitation, with physical therapy as the primary treatment plan. However, despite more options, many patients still receive inadequate rehabilitation. The development of an appropriate rehabilitation model is still necessary. This study aims to study factors influencing limb movements in post-stroke patients. Methods: This cross-sectional study comprised 120 ischemic stroke patients obtained by multi-stage sampling in Muang district, Phitsanulok province. The data were collected using questionnaires with Cronbach's alpha coefficient of 0.89. The ability to move the muscles of the limbs of the patients was assessed using the motor power assessment form, and binary logistic regression statistics analyzed the factors influencing limb movements. Result: Data analysis shows that 76% of the stroke patients were female, 39.3% aged 61–70 years had a mean of 62 years and a standard deviation (S.D.) of 8.9, 4.6% of stroke patients had a duration of illness of 6–12 months, and 94.2% had a caregiver. 53.1% received rehabilitation once a week, and 92.5% received Thai massage. Thai traditional medicine utilization methods consist of Thai massage, herbal compresses, herbal steam, and taking herbal medicines. There are two factors influencing the ability to move the limb muscles of stroke patients as follows: (1) the massage with the Thai traditional medicine rehabilitation method (Adj OR = 28.917, p-value = 0.006) and (2) the number of rehabilitation sessions per week (Adj OR = 2.465, p-value < 0.001). These two variables explain the variance of regaining limb movement among post-stroke patients of 42.5% at a significance level of 0.05. In this analysis, the predictive accuracy was 70%. Conclusion: Rehabilitation using Thai massage, together with the number of rehabilitation sessions per week, influenced the ability of limb movement in post-stroke patients. In other words, increasing the number of rehabilitation times per week and using Thai massage in rehabilitation will help stroke patients move their limbs better. [ABSTRACT FROM AUTHOR]

Background: The majority of persons with dementia (PWD) are mainly cared for by their family members in the home. Evidence is however scarce on family caregivers' psychosocial burden and quality of life in Asian countries including Malaysia. This study describes the baseline data of a telephone-delivered psychoeducational intervention study and examines the determinants of outcome measures (caregiver burden, depressive and anxiety symptoms, quality of life and caregiving self-efficacy) among Malaysian family caregivers to PWD. Methods: This was a cross-sectional study originated from the baseline survey of a randomized control trial of 121 family caregivers recruited from lists of PWD who were registered at memory and psychiatry clinics in three tertiary care hospitals in Malaysia. The participants were assessed for caregiver burden by the Zarit Burden Interview, depressive and anxiety symptoms by the Hospital Anxiety and Depression Scale, quality of life by the Control, Autonomy, Self-Realization, and Pleasure Scale, and caregiving self-efficacy by the Revised Scale for Caregiving Self-Efficacy. Results: Prevalence of caregiver burden was 69.4%, depressive symptoms 32.2% and anxiety symptoms 32.2%. Family caregivers to PWD having perceived peer support e.g., social/family/friend/significant other supports were less likely to report caregiver burden, depressive and anxiety symptoms, and more likely to report higher levels of quality of life and caregiving self-efficacy. Being married and PWD's ability to self-care were associated with lesser likelihood of experiencing caregiver burden, depressive and anxiety symptoms. The other determinants of greater probability of reporting better quality of life were caregivers' employment and having Islamic faith. Marital status (married), PWD's ability to self-care, spousal relationship with PWD and shared caregiving process were associated with higher likelihood of reporting caregiving self-efficacy. Conclusion: Caregiver burden, depressive and anxiety symptoms are prevalent in family caregivers to PWD in Malaysia. Social support and caregiving related factors influence family caregivers' quality of life and caregiving self-efficacy. Implementing psychoeducational intervention and support in the psychiatry and memory clinics may help improve the psychosocial burden, quality of life and caregiving self-efficacy in family caregivers of PWD. Trial registration: ISRCTN14565552 (retrospectively registered). [ABSTRACT FROM AUTHOR]

The current descriptive study reports the sleep, diet, and exercise patterns among 114 dementia caregivers, whose mean age was 55.7 (SD: 10.4) years, with 83 (72.8%) being women. The results indicate significant sleep dysfunction: 37.2% of caregivers reported rarely or never feeling rested upon waking, and 46.5% did not get enough sleep, with 45.6% sleeping only 5 to 5.5 h on average. Sleep latency was also prevalent, as 33.3% required 16 to 30 min to fall asleep. Dietary habits showed reliance on coffee, with 69.4% consuming it daily. Meat consumption was reported by 75%, and 60.9% ate pasta, indicating common dietary preferences. While 86.2% had one to three meals per day, 100% of the caregivers supplemented their diets with vitamins. The physical activity level was low, with 62.3% of respondents reporting no exercise in the past week. These findings underscore significant health concerns among dementia caregivers, including sleep deprivation, inadequate nutrition, and physical inactivity. The report emphasizes the need for targeted interventions to promote self-care practices that can enhance caregivers' health, including better sleep hygiene, balanced nutrition, and regular exercise. [ABSTRACT FROM AUTHOR]

Objectives: How dementia affects lesbian, gay, bisexual, trans, queer people or those with other minoritised sexual/gender identities (LGBTQ+) is not well understood. Furthermore, existing research often excludes the voices of LGBTQ+ people living with dementia and focuses instead on their care partners. This study addresses this evidence gap by drawing on the ESRC/NIHR funded DETERMIND cohort, consisting of 940 newly diagnosed people with dementia, to explore the peri‐diagnostic experiences of people living with dementia who identify as LGBTQ+. Methods: We recruited five people (who identified as lesbian, gay or bisexual [LGB]) and completed semi‐structured interviews with them and their partner caregivers (n = 3) discussing their experiences of (1) engaging with dementia health care services, (2) receiving a dementia diagnosis, and (3) the support they were offered after diagnosis. Interviews were shaped by the Candidacy Framework, a theoretical model for understanding accessibility of health services, and an inductive thematic analysis was employed to develop common themes. Findings: Participants did not routinely disclose their LGBTQ+ identities to health service professionals, despite feeling this was an essential aspect of who they are. They relied on their resilience of overcoming previous experiences of lifetime discrimination to navigate complicated dementia care systems. The importance of 'chosen families' as informal support networks for LGBTQ+ people living with dementia was highlighted, particularly given the lack of formal care services they felt comfortable accessing. All participants were concerned about their future care needs and whether they would receive home‐based or community‐based support that respected their LGBTQ+ identities. Conclusions: This study adds to the limited evidence base that can be used to inform future research, policy and practice seeking to address inequalities across the dementia care pathway. We only interviewed people who identified as LGB so generalizability to the whole LGBTQ+ population is limited, however our data suggest dementia health care professionals should encourage and support disclosures of LGBTQ+ identities so that inclusive care and support planning can be provided to LGBTQ+ people at every stage of dementia. [ABSTRACT FROM AUTHOR]

An increasing number of older people with severe mental illness (SMI) poses additional challenges to healthcare and social services. This scoping review aimed to investigate the life situation of older people living with severe mental illness and identify the research gaps in the existing literature. The current review followed the methodological framework for conducting scoping reviews by Arksey and O'Malley, consisting of five main stages: (1) identifying the research question (2) identifying relevant studies, (3) selecting the studies, (4) charting the data, and (5) collating, summarising, and reporting the results. An optional sixth stage, a consultation exercise, has also been used in this study: The scoping review was conducted in accordance with the PRISMA extension for scoping reviews PRISMA‐ScR, and the databases PsychINFO Scopus, Cinahl, Web of Science and PubMed were used. A total of 24 studies were included in the review. The thematic analysis focused on: (1) the perspective of older people with SMI, (2) the perspective of healthcare professionals supporting older people with SMI, and (3) the perspective of informal carers supporting older people with SMI. The results describe the life situation of older people living with SMI, especially in relation to the older peoples' experiences of suffering and well‐being. The staff and the informal carers need adequate knowledge to provide support to the older people with SMI. To gain greater knowledge about the life situation and support needed by older people with SMI, we strongly advocate additional research focusing on their own experiences. [ABSTRACT FROM AUTHOR]

Background: Rural family caregivers (FCGs) in the United States often experience high economic costs. This randomized controlled trial compared a transitional palliative care intervention (TPC) to support FCGs of seriously ill care recipients (CRs) to an attention control condition. We evaluated the TPC's effect on healthcare use and out‐of‐pocket spending for both FCGs and CRs. Methods: TPC FCGs received teaching, guidance, and counseling via video calls for 8 weeks following CR discharge from the hospital. After discharge, a research assistant called all FCGs once a month for up to 6 months or CR death to collect self‐reported healthcare utilization (e.g., outpatient, emergency department, and hospital), out‐of‐pocket healthcare spending (e.g., deductibles and coinsurance), and health‐related travel costs (e.g., transportation, lodging, food) for FCGs and CRs. Incidence rate ratios (IRRs) were estimated using negative binomial regressions. Results: The study included 282 FCG–CR dyads across three U.S. states. Follow‐up over the 6‐month period was shortened by high CR mortality rates across both arms (29%), but was similar across arms. TPC reduced nights in the hospital for CR (IRR = 0.75; 95% confidence interval [CI] = 0.56–0. 99). Total out‐of‐pocket spending was not significantly different for TPC versus control. Across both groups, mean out‐of‐pocket spending for dyads was $1401.85, with healthcare payments contributing $1048.58 and transportation expenses contributing $136.79. TPC dyads reported lower lodging costs (IRR = 0.71; 95% CI = 0.56–0.89). Conclusions: This study contributes to evidence that palliative care interventions reduce the number of nights in the hospital for seriously ill patients. Yet, overall rural FCGs and seriously ill CRs experience substantial out‐of‐pocket economic costs in the 6 months following hospitalization. Transitional care intervention design should consider impacts on patient and caregiver spending. Clinicaltrials.gov # is NCT03339271. [ABSTRACT FROM AUTHOR]

Providing care to a patient with cerebral palsy can have many negative impacts upon caregivers. This study was carried out to define caregiving burden in the caregivers of cerebral palsy patients and determine the relationships between religious coping, fatalism, and burden of care. This cross-sectional and correlational study included 132 caregivers. Data were obtained using the Religious Coping Scale, the Fatalism Scale, and the Caregiver Burden Scale. It was determined that 18.9% of the participants experienced a heavy care burden. The luck and pessimism dimensions of the Fatalism Scale were positively and weakly correlated with caregiving burden (p < 0.01), while there was no correlation between caregiving burden and positive or negative religious coping styles (p > 0.05). Perception of fatalism explained 10% of the total variance in caregiving burden (R = 0.329, R2 = 0.109, F = 5.195, p = 0.002). It is recommended that caregivers be supported by religious experts to strengthen positive religious coping styles and advisable fatalism perceptions. [ABSTRACT FROM AUTHOR]

As individuals age, changes in their health status and functional level may begin to require caregiving from family caregivers. The role of caregiver can be taxing, a well-established phenomenon known as caregiver burden. While many studies have examined the factors within the caregiver that can be predictive of caregiver burden (or burnout), relatively few have examined the factors of the care recipient that predict caregiver burden. Using a sample of individuals enrolled in the Department of Veteran's Affairs Home Based Primary Care program, we collected data on demographic, psychological (i.e. mood and cognitive) and nursing (e.g. ADL/IADL, fall risk, etc.) factors. Using stepwise regression modeling, we discovered that only care recipient's age, IADL impairment, and gender predicted caregiver burden. We discuss possible causes of the relationships and implications for nursing and homecare practice. [ABSTRACT FROM AUTHOR]

Background: Growing evidence suggests that informal helping (unpaid volunteering not coordinated by an organization or institution) is associated with improved health and well-being outcomes. However, studies have not investigated whether changes in informal helping are associated with subsequent health and well-being. Methods: This study evaluated if changes in informal helping (between t0;2006/2008 and t1;2010/2012) were associated with 35 indicators of physical, behavioral, and psychosocial health and well-being (at t2;2014/2016) using data from 12,998 participants in the Health and Retirement study — a national cohort of US adults aged > 50. Results: Over the four-year follow-up period, informal helping ≥ 100 (versus 0) hours/year was associated with a 32% lower mortality risk (95% CI [0.54, 0.86]), and improved physical health (e.g., 20% reduced risk of stroke (95% CI [0.65, 0.98])), health behaviors (e.g., 11% increased likelihood of frequent physical activity (95% CI [1.04, 1.20])), and psychosocial outcomes (e.g., higher purpose in life (β = 0.15, 95% CI [0.07, 0.22])). However, there was little evidence of associations with various other outcomes. In secondary analyses, this study adjusted for formal volunteering and a variety of social factors (e.g., social network factors, receiving social support, and social participation) and results were largely unchanged. Conclusions: Encouraging informal helping may improve various aspects of individuals' health and well-being and also promote societal well-being. [ABSTRACT FROM AUTHOR]

This study set out to investigate, using qualitative methodology, the experiences of spouses of people with Amyotrophic Lateral Sclerosis (ALS) during the coronavirus pandemic, with particular focus on spouse distress and cognitive and behavioral change in people with ALS (pwALS). Qualitative semi-structured interviews of nine spouses of pwALS living in England were conducted between 11/09/2020 and 20/04/2021, focusing on spouses' perspectives of how their lives and the lives of pwALS were affected by the pandemic and related lockdowns. Interviews were subject to thematic analysis. Four superordinate themes were identified from the spouses' interviews: (i) pandemic behaviors, which encompassed accounts of cautious behavior, relaxation of cautious behavior, and other people's attitudes to shielding the person with ALS; (ii) changes to daily life caused by the pandemic and progression of ALS; (iii) distress in spouses, which included anxiety, depression, and burden; and (iv) ALS-related behavioral impairment. Spouses also provided mixed accounts of telehealth care, pointing out its convenience but some felt that face-to-face appointments were preferable. While many reactions to the pandemic reported by spouses of pwALS may have been similar to those of the general population or other vulnerable groups, interviews indicated the potential for the pandemic to have made more apparent certain aspects of behavioral change in pwALS with which carers may require support. Clinicians need to acknowledge spouses' concerns about the potential limitations of remote clinical consultations, enquire about cognitive and behavioral change, and consider how input should be best provided in such limiting circumstances. [ABSTRACT FROM AUTHOR]

Dementia can be overwhelming to families and their caregivers. Informal caregiving is a widespread mode of providing dementia care in African American communities, yet impact of caregiving on informal or family caregivers in African American communities is burdensome. This study aimed to describe the lived experiences of informal caregivers of African American People Living with Dementia (PLWD) to understand their perceptions of dementia and dementia care, caregiver support needs, and service needs. Interpretive phenomenological qualitative inquiry guided this study to understand caregivers' experiences and needs. Ten family caregivers of African American PLWD in the community participated in this study. Data were collected through in-depth interviews and a diary study approach to document and interpret caregivers' experiences. The data analysis was based on procedures of content analysis. Four major themes emerged from the in-depth interviews: caregiver burden, familism, lack of information and community-based resources, and desire and need for culturally appropriate community-based resources. Triangulated diary entry data complemented the in-depth interviews with similar themes. This study highlights how African American informal caregivers of PLWD face various caregiving needs and challenges in dementia care including lack of culturally appropriate community resources and information. The study illustrates that African American cultural beliefs of familism are significant aspects of their caregiving experience and their coping strategies. These study results provide a useful foundation for various stakeholders to develop culturally targeted interventions and programs to support African American informal caregivers and their family members with dementia. [ABSTRACT FROM AUTHOR]

The progression from crawling to walking in infancy is associated with changes in infant language development. One possible explanation for such change is the infant's language environment. Prior research indicates that caregivers use more action directives with walking infants compared to crawling infants, but the relations of such parental speech with infant vocabulary is unknown. Here, we present findings from day‐long home audio recordings (Study 1) and laboratory observations (Study 2) of same‐aged crawling and walking infants to explore how caregiver language, specifically action directives, were associated with parent reported infant vocabulary size. Findings in both studies indicated that caregiver action directives were associated with crawling, but not walking infants' receptive vocabulary sizes. Specifically, action directives about objects occurring when the infant and caregiver were not jointly engaged were associated with higher receptive vocabulary scores for crawling infants, but no such pattern was found for walking infants. The replication of results in distinct samples with different research methodologies strengthens the findings. Taken together, these studies demonstrate that caregiver social engagement specific to infant motoric development is related with infant language learning. [ABSTRACT FROM AUTHOR]

Introduction We report a mixed-methods process evaluation embedded within a randomised controlled trial. We aimed to test and refine a theory of change model hypothesising key causal assumptions to understand how the New Interventions for Independence in Dementia Study (NIDUS)-Family (a manualised, multimodal psychosocial intervention), was effective relative to usual care, on the primary outcome of Goal Attainment Scaling (GAS) over 1 year. Methods In 2021–2022, intervention-arm dyads completed an acceptability questionnaire developed to test causal assumptions. We conducted qualitative interviews with dyads and intervention facilitators, purposively selected for diverse follow-up GAS scores. We collected observational data from intervention session recordings. We thematically analysed data, then integrated qualitative and quantitative data. Results 174/204 (85.3%) dyads allocated to NIDUS-Family, fully completed it, 18 partially completed, while 12 received no intervention. We interviewed 27/192 (14%) of dyads receiving any sessions, and 9/10 facilitators; and observed 12 sessions. 47/192 (24.5%) of carers completed the acceptability questionnaire. We identified four themes: (A) 'Someone to talk to helps dyads feel supported'; (B) 'NIDUS-Family helps carers change their perspective'; (C) 'Personalisation helps people living with dementia maintain their identity' and (D) 'Small steps help dyads move forward'. Conclusion Key causal pathway mechanisms were: a respectful, trusting and impartial relationship with the facilitator: supporting the development of meaningful goals and support to find manageable solutions. Core implementation factors were delivery of the modules from a consistent facilitator across regular sessions. Core contextual factors influencing these mechanisms were dyadic participation and understanding of abilities. [ABSTRACT FROM AUTHOR]

This weekly diary study investigated associations of weekly dyadic coping strategies with caregivers' willingness to care and burden. Multilevel modelling was applied to assess between- and within-person associations for 24 consecutive weeks in 955 caregivers. Greater willingness to care was reported in weeks when caregivers used more collaborative (b = 0.26, p < 0.001) and supportive (b = 0.30, p < 0.001) strategies, whereas uninvolved coping was associated with lower willingness to care (b = −0.44, p < 0.001). Using collaborative coping strategies was associated with lower weekly burden (b = −0.13, p < 0.001). A greater burden was reported in weeks when caregivers used more uninvolved (b = 0.19, p < 0.001) and controlling (b = 0.13, p < 0.001) coping strategies. A full understanding of whether caregivers' willingness to care and burden may be improved owing to weekly dyadic coping is essential for developing timely support for caregivers. [ABSTRACT FROM AUTHOR]