Navigating the crossroads of aging, caregiving and technology: Insights from a southern Spain about video-based technology in the care context.

Objective: As the world faces an aging population, the complexities of care management become increasingly pronounced. While technological solutions hold promise in addressing the dynamic demands of care, many nuances are to be considered in the design and implementation of active and assisted living technologies (AAL) for older adult care. This qualitative study, set in southern Spain, is positioned at the crossroads of healthcare challenges, as seen by the different actors involved in the care process and the technological solutions developed in response to these challenges. By investigating the complex landscape of caregiving and by examining the experiences and challenges faced by caregivers, healthcare professionals, and older adults, we aim to guide the development of vision-based AAL technologies that are responsive to the genuine needs of older adults and those requiring care. Methods: A qualitative research methodology was used in the study. In total15 in-depth interviews and five focus groups were conducted with a diverse group of stakeholders involved in the process of care provision and reception. Results: While the results demonstrate that there is a readiness for technological solutions, concerns over privacy and trust highlight the need for a carefully integrated, human-centric approach to technology in caregiving. Conclusion: This research serves as a compass, guiding future discussions on the intersection of aging, technology, and care, with the ultimate goal of transforming caregiving into a collaborative and enriching journey for all stakeholders involved.

Unmet Needs and Factors Impacting Home- and Community-Based Service Use Among Rural Appalachian Caregivers of People With Alzheimer's and Dementia.

Family caregivers of persons with Alzheimer's disease and related dementias (ADRD) living in rural areas face significant health and healthcare challenges. Limited research, however, has explored factors shaping their use of home- and community-based services (HCBS). This study identifies unmet needs among caregivers of people with ADRD in rural Western North Carolina and highlights contextual factors that facilitate HCBS use. Nineteen qualitative interviews were conducted with 21 family caregivers and 1 person with ADRD between 2021 and 2022. Thematic analyses revealed unmet needs among caregivers for information, service navigation, and caregiving support. HCBS use was shaped by multiple factors including illness needs, cultural beliefs, preferences for home-based care, and place-based resources. These findings suggest that culturally tailored HCBS are needed to support people with ADRD and their caregivers in rural Appalachian communities, especially those which facilitate access to paid caregiving, clearly communicate program eligibility requirements, and emphasize service availability.

Sitting in Wait: Everyday Caregiving Practices for People with Dementia in Rural South Africa.

Practice theories offer potential to reveal, understand, and attribute value to the everyday thoughts and actions of dementia caregivers. Drawing on ethnographic data from research in rural South Africa, on everyday dementia care practices, we highlight the profound importance of mundane practices - especially "sitting in wait" - for optimizing wellbeing of people with dementia who are cared for at home. We draw attention to the structural drivers of homebased (informal) care, which is underpinned by state inaction. This situates the act of sitting in wait as both an act of care and an embodied form of structural powerlessness.

The hidden costs of informal caregiving: a concept analysis.

BACKGROUND: "The hidden costs of informal caregiving" is an interdisciplinary concept. While caregivers make a significant contribution to the process of caregiving, they sacrifice their leisure time, and incur risks of dropping out of the job, impaired mental and physical health, and decreased well-being within the context of caregiving. Those invisible sacrifices are often overlooked and described as hidden costs of informal caregiving. However, the conceptualisation of hidden costs of informal caregiving has not yet been clarified and scientifically assessed. The research aimed to clarify the concept of hidden costs of informal caregiving and develop an operational definition. METHODS: Walker and Avant's concept analysis was conducted. Databases of CBM, CNKI, WanFang, VIP, PubMed, Embase, CINAHL, Web of Science, MEDLINE, Cochrane Library, Econlit, CINAHL and ProQuest were searched with the term "hidden costs of informal caregiving". Information about the uses of the concept, defining attributes, model cases, antecedents, consequences and empirical referents of hidden costs of informal caregiving was extracted and synthesized. RESULTS: A total of 25 articles were included. The six defining attributes of hidden costs of informal caregiving were identified as including "undertaken by informal caregivers", "the time costs of caregiving", "costs of career development" "physical well-being costs", "mental well-being costs" and "social relationship costs". Personal characteristics of the caregivers and care recipients, along with caregiving attributes, were among the antecedents. The consequences of hidden costs of informal caregiving resulted in negative influences which included poor quality of life, life-altering decisions, options for the type of care, some degree of economic hardship, decreased compliance with treatment plans and monetary value informal caregivers are willing to pay to be replaced. CONCLUSION: This concept analysis decisively illuminated the hitherto nebulous concept and expanded the contents of hidden costs of informal caregiving, which will foster a deeper appreciation of the invisible cost of caregivers. Moreover, it will provide a reference for the study of the hidden costs of informal caregiving in future, contribute to the development of assessment tools and theoretical models of hidden costs of informal caregiving, and create a basis for designing an evidence-based care program.

Effectiveness of a Mobile App (Meds@HOME) to Improve Medication Safety for Children With Medical Complexity: Protocol for a Randomized Controlled Trial.

BACKGROUND: This study will pilot-test the mobile app, Medication Safety @HOME-Meds@HOME intervention to improve medication administration accuracy, reduce preventable adverse drug events, and ultimately improve chronic care management for children with medical complexity (CMC). The Meds@HOME app was co-designed with CMC families, secondary caregivers (SCGs), and health professionals to support medication management for primary caregivers (PCGs) and SCGs of CMC. We hypothesize that Meds@HOME will improve caregivers' medication administration accuracy, reduce preventable adverse drug events, and ultimately improve chronic care management. OBJECTIVE: This study aims to evaluate the effectiveness of Meds@HOME on medication administration accuracy for PCGs and SCGs. METHODS: This study will recruit up to 152 PCGs and 304 SCGs of CMC who are prescribed at least 1 scheduled high-risk medication and receive care at the University of Wisconsin American Family Children's Hospital. PCGs will be randomly assigned, for the 6-month trial, to either the control group (not trialing Meds@HOME) or the intervention group (trialing Meds@HOME) using 1:1 ratio. The Meds@HOME app allows caregivers to create a child profile, store medication and care instructions, and receive reminders for upcoming and overdue care routines and medication refills. Surveys completed both at the start and end of the trial measure demographics, medication delivery knowledge, confidence in the CMC's caregiving network, and comfort with medical information. Univariate and multivariate generalized estimation equations will be used for primary statistical analysis. The primary outcome is the PCG's rate of medication administration accuracy measured as correct identification of each of the following for a randomly selected high-risk medication: indication, formulation, dose, frequency, and route at baseline and after 6 months. Secondary outcomes include SCG medication administration accuracy (indication, formulation, dose, frequency, and route), count of University of Wisconsin hospital and emergency department encounters, PCG-reported medication adherence, count of deaths, and PCG medication confidence and understanding. RESULTS: Recruitment for this study began on November 29, 2023. As of May 15, 2024, we have enrolled 94/152 (62%) PCGs. We expect recruitment to end by August 1, 2024, and the final participant will complete the study by January 28, 2025, at which point we will start analyzing the complete responses. We expect publication of results at the end of 2025. CONCLUSIONS: The Meds@HOME mobile app provides a promising strategy for improving PCG medication safety for CMC who take high-risk medications. In addition, this protocol highlights novel procedures for recruiting SCGs of CMC. In the future, this app could be used more broadly across diverse caregiving networks to navigate complex medication routines and promote medication safety. TRIAL REGISTRATION: ClinicalTrials.gov NCT05816590; https://clinicaltrials.gov/study/NCT05816590. INTERNATIONAL REGISTERED REPORT IDENTIFIER (IRRID): DERR1-10.2196/60621.

"Faith and a sunny day": Association of patient frailty with strain experienced by informal caregivers of older adults with non-muscle-invasive bladder cancer.

INTRODUCTION: Few studies have evaluated the potential effects of aging-related conditions like frailty in older adults with cancer on informal caregivers. Our objective was to evaluate the association between the sum total of the aging-related conditions of older adults with non-muscle-invasive bladder cancer (NMIBC) and the strain reported by their informal caregivers. MATERIALS AND METHODS: We conducted an explanatory sequential mixed methods cross-sectional survey study that recruited 81 dyads of older adults with NMIBC (age ≥ 65 at diagnosis) and their informal caregivers. Our outcome was measured by the Caregiver Strain Index (CSI), a self-reported measure of informal caregivers. Our exposure was the patient's deficit accumulation index (DAI), a validated composite measure of frailty derived from a geriatric assessment. A multivariable negative binomial regression was conducted to model CSI. We conducted qualitative thematic content analysis of responses to open-ended survey questions to understand specific types of caregiver strain and to identify coping strategies. RESULTS: Mean ages of patients and caregivers were 79.4 years and 72.5 years, respectively. Most caregivers were spouses (75.3 %) and lived with the patient (80.2 %). Of patients, 54.3 % were robust, 29.6 % were pre-frail, and 16.1 % were frail. In the multivariable model, we found that patient DAI was significantly associated with CSI (adjusted incidence rate ratio 1.05, 95 % CI 1.02-1.09). The top three sources of strain identified by caregivers were emotional adjustments, medical management, and family adjustments. Coping strategies for each included self-management of emotions, self-education about bladder cancer, and social support, respectively. DISCUSSION: In this cross-sectional study, we found that worsening frailty in an older adult with NMIBC was associated with greater informal caregiver strain. Informal caregivers reported challenges with emotional management, family dynamics, and medical tasks. These findings may inform longitudinal research and interventions to support informal caregivers who provide care for older adults with NMIBC.

Changes in Family Structure and Increasing Care Gaps in the United States, 2015-2050.

Research on caregiving in the United States has not clearly identified the scope of the gap between care needed and care received and the changes implied by ongoing and anticipated shifts in family structure. This article examines the magnitude of contemporary gaps in care among older adults in the United States and how they are likely to evolve through 2050. We use data from the Health and Retirement Study (1998-2014) to estimate care gaps, operationalized as having difficulties with activities of daily living (ADLs) or instrumental activities of daily living (IADLs) but not receiving care. We also estimate variation in care gaps by family structure. Then, we use data from demographic microsimulation to explore the implications of demographic and family changes for the evolution of care gaps. We establish that care gaps are common, with 13% and 5% of adults aged 50 or older reporting a care gap for ADLs and IADLs, respectively. Next, we find that adults with neither partners nor children have the highest care gap rates. Last, we project that the number of older adults with care gaps will increase by more than 30% between 2015 and 2050-twice the rate of population growth. These results provide a benchmark for understanding the scope of the potential problem and considering how care gaps can be filled.

"When I hold my daughter, she quiets, no need [for]any verbal conversation": A qualitative understanding of responsive caregiving in rural, Sindh Pakistan.

Responsive caregiving is associated with secure attachment and positive child developmental outcomes. However, there is some debate on whether responsive caregiving is a universal construct. Few studies have researched responsive caregiving in diverse cultural settings, particularly in low- and middle-income countries. In this study, we explore if and how responsive caregiving is conceptualized among mothers of children under 3-years-old in rural, Sindh Pakistan. A phenomenological qualitative study was implemented in Naushahro Feroze through in-depth interviews with twenty mothers. Mothers were asked about their aspirations for their children and how they would respond in a variety of different scenarios. Data were analyzed using thematic content analysis with an inductive-deductive coding scheme. There was substantial variation in mothers' described responsive behaviors and beliefs. Almost all mothers described using some form of responsive parenting. Responding to children's demands while the mother was preoccupied, using verbal responses to console children, and if mothers believed that children should be praised, lacked consensus. Most mothers described using breastfeeding for consolation and highlighted the importance of immediately consoling their crying child. The results suggest that there is a need for a more nuanced approach to understand caregiver behaviors across contexts.

Una sensible prestación de cuidado se asocia con una afectividad segura y con resultados positivos en el desarrollo del niño. Sin embargo, se da un debate sobre si la sensible prestación de cuidado es una estructura universal. Pocos estudios han investigado la sensible prestación de cuidado en diversos escenarios culturales, particularmente en países de bajas y medias entradas económicas. En este estudio, exploramos si la sensible prestación de cuidado está conceptualizada entre las madres de niños menores de 3 años en el área rural de Sindh en Pakistán y cómo lo está. Un estudio fenomenológico cualitativo se implementó usando datos de Naushahro Feroze (ciudad en la provincia de Sindh), por medio de entrevistas profundas con veinte madres. A las madres se les preguntó acerca de sus aspiraciones con respecto a sus niños y cómo ellas responderían en una variedad de diferentes escenarios. Se analizaron los datos usando un análisis de contenido temático con un esquema de codificación inductivo­deductivo. Hubo variación sustancial en las descripciones de las madres acerca de sus conductas y creencias sensibles. Casi todas las madres hicieron las descripciones usando alguna forma de crianza sensible. Faltó el consenso en el caso de responder a las peticiones de los niños mientras la madre estaba preocupada, en el uso de respuestas verbales para consolar a los niños, así como en el caso de si las madres creían que los niños debían ser elogiados. La mayoría de las madres hizo sus descripciones usando el amamantar como manera de consolar y subrayó la importancia de consolar inmediatamente al niño que llora. Los resultados sugieren que hay una necesidad de un acercamiento más matizado para comprender las conductas de prestación de cuidado a través de los contextos.

Receiving and adjusting to a diagnosis of ALS: A qualitative study with informal caregivers.

OBJECTIVES: Diagnosis of amyotrophic lateral sclerosis (ALS) takes more than 1year from detection of first symptoms. The paper seeks to understand the ALS diagnostic process and adjustment from the perspective of informal caregivers. METHODS: The data stems from an interview study with 9 current and 13 bereaved informal caregivers of people with ALS in Switzerland. The interviews were analyzed using thematic analysis. RESULTS: We identified 3 key themes pertaining to ALS diagnosis. In the first theme, we present the close involvement of informal caregivers in the "diagnosis journey." Highlighted within this theme is the important role they play, which ultimately leads to diagnosis of ALS avoiding further delays. Second, we relay their perceptions on "diagnosis communication pitfalls" where they underlined empathy and planning from the part of medical professional, while communicating the terminal diagnosis of ALS. Participants' reactions and adjustments post-ALS diagnosis are described in "the aftermath of diagnosis." In this third theme, we highlight participants' shock and their need to rethink overall life plans and roles in their family. SIGNIFICANCE OF THE RESULTS: Diagnosis communication that is clear, empathetic, and adjusted to the needs of the patients as well as their caregivers is critical. More work is needed to improve diagnosis communication for ALS patients. Receiving the diagnosis of ALS leads to complete changes in life of caregivers. It is therefore necessary that medical professionals provide adequate support that allows them to plan for their future.

A Way Forward for Comprehensive Cancer Caregiver Support.

Family caregivers are integral to patient care. However, a combination of systemic forces places enormous pressure on family caregivers, while simultaneously devaluing them. Recently, more public attention has been paid to caregivers' importance, prevalence, and needs, generating supportive responses by government, employers, and the media. As of yet, there has not been a commensurate response by health care institutions. We identify four key challenges to building comprehensive cancer caregiver support and propose five necessary components for future programs that cancer centers and organizations can adopt. Comprehensive cancer caregiver support is attainable but national organizations need to lead the effort through standardization of guidelines and metrics for cancer centers.

Emotional competences as predictors of psychological wellbeing and quality of life of supplementary grandparents caregivers.

Introduction: Grandparents are increasingly becoming key figures in the supplementary care of grandchildren. Based on the Resilience Model of Family Stress, Adjustment and Adaptation, the present study aims to analyze the emotional competences that canpl predict higher levels of psychological wellbeing and quality of life in supplementary grandparents caregivers. Methods: A sample of 270 supplementary grandparents caregivers living in Spain participated. Most participants were women (71.1%), and the mean age was 67.83 years (SD = 6.26). Most participants were occasional caregivers, that is, they care for less than 10 h per week (76.3%). We conducted hierarchical multiple regression analysis, one for psychological wellbeing and the other for quality of life. Results: The regression model for psychological wellbeing identified that age, management of caregiving stress, self-confidence in the caregiving role, management of work-life balance difficulties and emotional self-regulation explained 32.8% of its variance. The regression model for quality of life showed that age, type of grandparent caregiver, management of caregiving stress, management of work-life balance difficulties and emotional self-regulation explained 31.2% of its variance. Conclusion: This study focuses on supplementary grandparents caregivers, whereas literature has tended to look at primary grandparents caregivers. The results highlight the role of emotional competences as predictors of supplementary grandparents caregivers' psychological wellbeing and quality of life, overcoming the usual tendency in the literature to focus on the negative consequences of grandparents caregiving for grandchildren, and emphasizing the competences that grandparents have to cope with this care in a satisfactory way, which, moreover, can be trained.

Caregiving-Related Characteristics and Dental Care Utilization in Informal Caregivers of Persons with Dementia: Is There a Gender Difference?

BACKGROUND AND OBJECTIVES: Dental care utilization is an important, yet understudied aspect of health care in informal caregivers of persons with dementia. This study examined how caregiving-related characteristics are associated with dental care utilization among U.S. informal caregivers of persons with dementia and further examined gender differences. RESEARCH DESIGN AND METHODS: Pooled data came from the Behavioral Risk Factor Surveillance System in 2016, 2018, 2020, and 2022. A nationally representative sample of informal caregivers (n = 3,909) was included. Dental care utilization was "yes" versus "no" within the past year. Caregiving-related characteristics included caregiver role, intensity of care, duration of care, and type of care. Logistic regressions and subgroup analyses were conducted. RESULTS: In total sample, compared to adult child caregivers, spousal caregivers were 28% less likely to visit a dentist (odds ratio [OR] = 0.72; 95% confidence interval [CI] = 0.56, 0.94). Caregivers who provided care for more than 20 hours per week were 18% less likely to visit a dentist (OR = 0.82; 95% CI = 0.69, 0.98). In subgroup analyses, intensity of care was a barrier to dental care utilization for female caregivers (OR = 0.78; 95% CI = 0.62, 0.98), whereas caregiver role such as spousal caregiver (OR = 0.59; 95% CI = 0.39, 0.89) or other relative caregiver (OR = 0.70; 95% CI = 0.50, 0.99) was a barrier to dental care utilization for male caregivers. DISCUSSION AND IMPLICATIONS: The findings highlight the importance of caregiving-related characteristics in dental care utilization and suggest gender-tailored interventions.

Qualitative Exploration of the "Guilt Gap" Among Physician-Faculty with Caregiving Responsibilities.

Introduction: Differences in time commitments and resources contribute to the difficulties of work-life integration for many physician-scientists, particularly for women with family caregiving responsibilities. Understanding the challenges faced by this population is critical for the retention of these critical members of the workforce. Methods: We conducted semi-structured telephone interviews with recipients of the 2017 Doris Duke Charitable Foundation's Fund to Retain Clinical Scientists (FRCS) and reviewed application narratives from the 2020 award recipients. Award recipients were asked about their caregiving responsibilities and careers, particularly as they related to the impact of the FRCS award and the aftereffects of the COVID-19 pandemic. Analysts then iteratively revised the coding scheme and interpreted the data using qualitative thematic analysis. Results: Of the 14 interviewees and 19 narrative contributors, 25 (76%) were women. The main qualitative themes that emerged were as follows: (1) women experience unrealistically high caregiving burdens, (2) women are overburdened by disadvantageous and undervalued expectations at work, (3) work-life expectations increased during the COVID-19 pandemic, and (4) unrealistic work-life expectations led to guilt and burnout. Conclusions: These findings provide a rich understanding of the factors contributing to guilt and burnout among physician-scientists, particularly women, and how work duties that increase physician obligations exacerbated these challenges. Understanding these experiences is critical to supporting and retaining a diverse workforce in academic medicine.

"What choice do we have?" Reactive and proactive decision-making for aging in place with dementia.

BACKGROUND: Promoting options for aging in place (AIP) has broad appeal to policymakers and professionals providing services to persons living with dementia (PWD). However, the benefits or burdens of AIP likely vary among individuals and families. We sought to describe factors influencing decision-making to age in place versus seek a higher level of residential care for PWD. METHODS: A qualitative study was undertaken as part of a larger mixed-methods study utilizing semi-structured interviews with PWD, family care partners, and dementia clinicians. Interview transcripts were analyzed using qualitative content analysis with constant comparison. Sample size was determined by thematic saturation within subgroups. RESULTS: We conducted 74 interviews among 14 PWD, 36 care partners, and 24 clinicians. Preferences for AIP were driven by (1) desire to preserve independence, (2) a sense that the "best care" is delivered by loved ones and in a familiar environment, (3) distrust and fear of care facilities, and (4) caregiver guilt. PWD and care partners frequently considered moving from home as a "last resort" and wanted to avoid planning for future care needs. Many decisions to move were reactive and triggered by patient safety events, physical dependency, or the loss of caregiver. Proactive decision-making was facilitated by (1) prior experience witnessing the challenges of caring for a person with advanced dementia in the home; and (2) having substantial financial resources such that participants could seek major home adaptations or avoid "lower quality" institutions. CONCLUSIONS: Decisions regarding care setting for PWD frequently do not feel like a choice and are made under imperfect conditions. Programs using AIP as an outcome measure should recognize the various patient-centered and non-patient-centered factors that influence such choices, and interventions should be designed to promote more informed and equitable decision-making for care setting in dementia.

Participatory research with carers: A systematic review and narrative synthesis.

INTRODUCTION: As patient and public involvement (PPI) in research has become increasingly common, research-based recommendations on its principles and impacts have been established. The specifics of conducting PPI are likely to differ when involving different groups. Family/informal carers for those with health conditions or disabilities have a lot to contribute to research, but instances of their involvement have yet to be reviewed. OBJECTIVE: To systematically review and synthesize studies where family/informal carers have been involved in the research process, to develop an understanding of the benefits, barriers and facilitating factors. METHODS: A search of five electronic databases was conducted using a combination of terms relating to carers, involvement and research. A grey literature search, expert consultation and hand-searching were also used. Following screening, data extraction and quality assessment, a narrative synthesis incorporating thematic analysis was conducted. FINDINGS: A total of 55 studies met the inclusion criteria, with diverse design and participatory approaches. Four themes were identified, relating to the outcomes, challenges, and practicalities of involving carers: (re) building relationships with carers; carers as equals not afterthoughts; carers have unique experiences; carers create change. Full involvement throughout the research was not always possible, due to barriers from the research world and responsibilities of the caring role. The literature demonstrated ways for carers to contribute in ways that suited them, maximizing their impact, while attending to relationships and power imbalances. CONCLUSION: By summarizing the reported instances of carer involvement in research, this review brings together different examples of how successful research partnerships can be built with carers, despite various challenges. Carers are a heterogeneous group, and participatory approaches should be tailored to specific situations. Wider understanding of the challenges of conducting empowering research with carers, and the resources required to address these, are needed. PATIENT AND PUBLIC INVOLVEMENT: The initial findings and themes were presented to a group of carers who had been involved in research and whose reflections informed the final synthesis.

Caregiver burden, mental health, quality of life and self-efficacy of family caregivers of persons with dementia in Malaysia: baseline results of a psychoeducational intervention study.

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).

Translation and validation of the caregiving burden scale for family caregivers of children with cancer in chinese population.

BACKGROUND: Effective response and reducing the burden of family care for children with cancer is critical, and China currently lacks a specific assessment tool. AIMS: This study aimed to translate and validate the Caregiving Burden Scale for Family Caregivers of Children with Cancer (CBSFC-CC) and then test and implement the tool. METHODS: According to the Beaton cross-cultural debugging guide, preliminary Chinese version of CBSFC-CC scale was formed, which was suitable for Chinese language environment and clinical context. Exploratory factor analyses (EFA) and confirmatory factor analyses (CFA) were performed to verify structural validity. Convergent validity, discriminant validity and reliability were also conducted. RESULTS: A total of 529 family caregivers of children with cancer participated in the survey. EFA extracts and combines four factors and explained 65.80% of the total variation. CFA proved that all the goodness-of-fit indicators were acceptable. The Cronbach's alpha of the Chinese version of CBSFC-CC was .96, and the test-retest reliability coefficient was .95. Four dimensions and 29 items were identified in the final Chinese version of CBSFC-CC. CONCLUSION: The chinese version CBSFC-CC is scientifically reasonable and has good reliability and validity, which can be applied to the investigation of the nursing burden of family caregivers of children with cancer in China.

Differential Effects of an Integrated Community-Based End-Of-Life Support Team (ICEST) Model for Terminally Ill Older Adults on Spousal and Adult-Children Caregivers.

Backgrounds: Family caregivers (FCs) play an essential role in delivering home-based end-of-life care. However, little is known about FCs'' experiences when undertaking this role. The integrated community end-of-life support team (ICEST) is a needs-driven, home-based, family-centered care model in Hong Kong. We evaluated its effects on FCs and compared outcomes for spouses and adult children. Method: A multicenter pre-post-test study was conducted. Eligible participants were primary FCs of terminally ill older adults (age ≥ 60) who had a life expectancy of ≤12 months. Baseline (T0) and three-month post-intervention (T1) outcome measures included FCs'' caregiving strain, psychological distress, perceived external support, intimate relationships, and communications regarding care planning. Results: A sample of 628 FCs were enrolled at T0, and 40.0% completed the T1 assessments. The ICEST model was effective in reducing caregiving strain, depression, and worries about patients, whilst there were improvements in agreement about care planning with patients, and perceived external supports. At T0, spouses held more negative perceptions of caregiving and faced fewer adjustment demands than adult children. Compared with spouses, adult children were more intimate with patients. Between T0 and T1, spouses experienced a greater reduction in worries about patients, than adult children. Conclusions: The ICEST model contributed to better outcomes, individually and relationally, for FCs, regardless of relationship type. Spouses and adult children faced different challenges while delivering home-based end-of-life care. Effective interventions should modify the negative perceptions of caregiving in spousal caregivers and enable adult children to deal with multiple tasks and complex expectations.

Implications of Rebalancing Home-Based Care for Family Caregivers to Older Adults.

Over the last several decades, Medicaid has been "rebalancing" services from institutions to the community, increasing support of home- and community-based services (HCBS). These services could potentially substitute for care typically provided by family members, replacing or reducing care from kin. Leveraging one of the most recent Medicaid rebalancing programs, the Balancing Incentive Program (BIP), and using data from the 2008-2016 Health and Retirement Study on 953 Medicaid beneficiaries ages 65 and over with at least one functional limitation, we examined the relationship between exposure to BIP and family and professional caregiving. BIP exposure was not associated with receipt of care or total hours of care. It was, however, associated with more hours of professional care and fewer hours of family care from non-spouse kin. These findings suggest that recent Medicaid rebalancing programs, while intended to meet the desires of older adults, could have implications for their families.

Characteristics of Informal Caregivers and Social Participation of People with Dementia.

BACKGROUND AND OBJECTIVES: Social participation is associated with increased quality of life and well-being but declines following onset of dementia. Informal caregivers may facilitate social participation among people with dementia. This study aims to identify characteristics of informal caregivers associated with social participation of people with dementia in valued activities. RESEARCH DESIGN AND METHODS: This cross-sectional study used data from the 2011, 2015, and 2017 National Health and Aging Trends Study (NHATS) and the National Study of Caregiving (NSOC). NHATS respondents with possible or probable dementia and a family caregiver were included (N=1,060). Respondents were asked whether they participated in each of five social activities during the past month. Valued activities were considered somewhat or very important. Survey weighted logistic regression models were computed to identify characteristics of primary informal caregivers associated with participation of people with dementia in social activities. RESULTS: Social participation of people with dementia was not independently associated with sociodemographic variables or relationship to the primary caregiver (spouse/partner, adult child, or other relative/non-relative). Social participation of primary caregivers was associated with increased participation of people with dementia in the same activity for visiting friends/family (OR=1.88, p=0.016), attending religious services (OR=4.82, p<0.001), and volunteering (OR=3.25, p=0.015), while greater caregiver external support was associated with increased participation of people with dementia in organized activities (OR=1.37, p=0.022). DISCUSSION AND IMPLICATIONS: Assets of informal primary caregivers found to promote social participation of people dementia include traveling to the person with dementia's home, being socially active themselves and utilizing support services.