Caregiving Tasks Research Articles

LIFELONG CAREGIVERS: INFLUENCES OF AGE AND INCOME ON DEPRESSION AMONG PARENTS OF CHILDREN WITH DISABILITIES

Abstract More than 20% of Americans have an intellectual or developmental disability (IDD). Of these, 70% are currently children and 30% are adults. Understanding wellbeing among their family caregivers provides an important avenue to supporting families. However, little research has included a wide range of family caregivers, focusing primarily of caregivers of young children or older caregivers of adults. Thus, it may be important to examine stressors among caregivers as they move across the lifespan. We used the 2020 BRFSS data to examine depression among a group of 522 family caregivers (M age = 56 years; range 24 – 80+) to children and grandchildren. Among the caregivers, 64% assisted with BADLs and 89% performed household chores related to the person with IDD. Among this age-diverse group, our 3-step hierarchical logistic regression revealed nonsignificant influences of caregiving tasks on depression, with Odds Ratios ranging from 1.11 to 1.22. Income was a significant contributor to the model, with ORs greater than 4.8 for the lower ends of income. After allowing caregiving tasks and income to account for their unique and shared variance, age still emerged as significant in Step 3, with younger caregivers somewhat less likely to report depression (OR = .98). Our results suggest the ongoing need to examine areas in which family caregivers need support across the lifespan.

DEVELOPMENT OF AN ONLINE DISASTER PREPAREDNESS PROGRAM FOR CAREGIVERS OF PERSONS WITH DEMENTIA

Abstract Individuals with medical conditions, including persons with dementia (PWD), are vulnerable in disaster situations. Disasters limit caregivers’ ability to continue with care due to stress, reduced resources and limited social support. We previously developed and tested a disaster preparedness program for older adults, Disaster PrepWise, and showed its impact on improving preparedness and personal emergency support networks. Through community engaged approaches, we adopted this program to specifically support family caregivers of PWD. Contents were revised based on the emergency management and dementia caregiving literature, and input from the stakeholder advisory board (SAB) consisting of caregivers, aging service providers, public health, and emergency management agencies. The SAB also provided guidance on implementation strategies from the lens of over-burdened caregivers. The new program includes a five-step process with an emphasis on the needs of caregivers and caregiving tasks, for example, developing emergency caregiving network to be activated during and after a disaster. The program also informs caregivers of tasks involved in the event of an emergency and provides various information such as how to navigate staying at public shelters with PWD, identify services during and after an emergency, and manage stress. Preliminary data shows high levels of acceptance and perceived usefulness of this caregiver-specific program. The program is perceived to fill a gap in current disaster management approaches that have limited ability to support vulnerable populations. Caregivers and service providers also praised this program’s ability to connect caregivers to community programs and resources. Additional pilot data will be presented.

DEVELOPMENT OF AN AI-POWERED EMOTIONALLY INTELLIGENT, INTERACTIVE AGENT PROTOTYPE TO SUPPORT INFORMAL CAREGIVERS

Abstract Long-term informal caregiving for older adults with dementia is exhausting and poses risks to caregivers’ health outcomes. Most informal caregivers are not well prepared for their new role, facing various challenges and receiving limited support. With the advent of artificial intelligence (AI) and information and communication technologies (ICTs), assistive technology is increasingly useful for supporting caregivers. However, limited research assesses the potential for AI to facilitate a privacy-preserving computation environment to provide proactive assistance to caregivers. This project aims to fill this gap by leveraging the tremendous potential of Multimodal Machine Learning and Large Language Models (LLMs) to develop a prototype of an AI-powered emotionally intelligent, interactive agent for informal caregivers. We introduce an effective context-driven instruction tuning technique that enables LLMs to finetune various caregiving-related tasks (tips generation, answering questions, elaborating a specific training module) with instructions. The project will also deliver a first-of-its-kind custom dataset augmented with manualized instructions for relevant caregiving tasks, which is used for finetuning several state-of-the-art LLM models. Our intelligent interactive agent prototype currently has the ability to evaluate caregivers’ unique affective states at query times to provide personalized assistance, addressing various types of caregivers’ situation-specific queries (e.g., managing agitation, wandering, or medications). The prototype is capable of understanding and responding to the user’s natural language queries and designing short, machine-driven persuasive conversations on a pre-defined set of topics. Our prototype has the potential to provide individualized and contextualized support for caregiving tasks which in turn may greatly reduce caregiver burden.

SOCIAL NETWORKS: BUILDING RESOURCES FOR DIVERSE AGING FAMILIES

Abstract Social networks provide tangible resources for older adults and their families. Yet, their formation and characteristics may vary across diverse aging contexts. Friedman and colleagues examine multiple dimensions of caregivers’ networks using a nationally representative sample (N=2,176). Latent profile analysis identified three classes of caregiving networks: (1) Large, sparse networks with relatively few kin and only some people who assist with caregiving tasks for care recipients; (2) Moderately-sized, somewhat dense, kin-based networks; (3) Small, very dense family networks where caregiving is shared across network members, all of which uniquely influence caregiver well-being. Hu and colleagues evaluate measurement invariance of objective and subjective social isolation between US-born and foreign-born older adults using a regionally representative sample (N=611). Findings show indicators of social network structure and perceived relationship quality may be useful for examining social isolation among older immigrants. Ajrouch and colleagues show distinct dimensions of networks differentially influence older adult’s cognitive function. Larger networks and higher proportion of family are positively related while higher contact frequency is negatively related to cognitive function. Using data from the Detroit-based Social Relations Study, Webster and Chin show the extent of similarity in health-related behaviors between older adults and their closest social network members. Analysis of 247 dyads illustrate associations between multiple social network factors (homophily, structure, and relationship quality) and similarity in these behaviors. Together, these papers advance theoretical and methodological approaches to the ways in which social networks serve as a resource across diverse aging contexts.

EAST MEETS WEST: INTERVENTIONS, PRACTICE MODELS, AND POLICIES TO SUPPORT FAMILY CAREGIVERS IN DIVERSE CULTURES

Abstract This East Meets West symposium consists of six studies that examined innovative interventions, practice models and policies designed to support family caregivers of older adults in the U.S., Taiwan, and mainland China. The first two papers both used case management interventions to assist family caregivers with a focus on caregiver depression. The paper from the U.S. found that more difficulties of performing caregiving tasks and less caregiver preparation contributed to higher levels of depression, and the paper from Taiwan found that caregivers who received the case management service reduced depression at four-month and six-month follow-up assessments. The third paper discussed a “time travel” paradigm developed to guide service design and delivery for persons with dementia at different stages. The fourth paper used the state of Michigan as a case to examine service gaps in the current aging service network, and identifies an urgent need for statewide policy renovations to support family caregivers. The fifth and sixth papers both used large secondary data analyses to examine the effects of piloted policy and practice efforts on family caregiver outcomes. One study found that the long-term care insurance programs have resulted in positive caregiver outcomes including reduced caregiving financial cost, time, and physical and psychological burden. The other study found the use of home-based care services reduced adult children caregiver burden and did not affect the relationship between older adults and adult children caregivers. After individual presentations are done, two discussants will summarize shared themes in these papers and provide critical feedback.

SOCIAL NETWORKS AND COGNITIVE HEALTH IN RACIAL/ETHNIC CONTEXT

Abstract Social networks provide tangible resources for older adults and their families. Yet, their formation and characteristics may vary across diverse aging contexts. Friedman and colleagues examine multiple dimensions of caregivers’ networks using a nationally representative sample (N=2,176). Latent profile analysis identified three classes of caregiving networks: (1) Large, sparse networks with relatively few kin and only some people who assist with caregiving tasks for care recipients; (2) Moderately-sized, somewhat dense, kin-based networks; (3) Small, very dense family networks where caregiving is shared across network members, all of which uniquely influence caregiver well-being. Hu and colleagues evaluate measurement invariance of objective and subjective social isolation between US-born and foreign-born older adults using a regionally representative sample (N=611). Findings show indicators of social network structure and perceived relationship quality may be useful for examining social isolation among older immigrants. Ajrouch and colleagues show distinct dimensions of networks differentially influence older adult’s cognitive function. Larger networks and higher proportion of family are positively related while higher contact frequency is negatively related to cognitive function. Using data from the Detroit-based Social Relations Study, Webster and Chin show the extent of similarity in health-related behaviors between older adults and their closest social network members. Analysis of 247 dyads illustrate associations between multiple social network factors (homophily, structure, and relationship quality) and similarity in these behaviors. Together, these papers advance theoretical and methodological approaches to the ways in which social networks serve as a resource across diverse aging contexts.

SOCIAL NETWORK STRUCTURE AND THE WELL-BEING OF FAMILY CAREGIVERS TO OLDER ADULTS

Abstract Personal networks provide social support to both older adults and the family members who care for them, yet we know very little about the different structures of caregiver networks and which are most protective of caregiver well-being. Using a new nationally representative survey of 2,176 individuals who report providing care to a family member or friend age 50 or older with a health condition during the height of the Covid-19 pandemic and give detailed information on their personal networks, we examine caregivers’ networks in terms of size, density, proportion kin, and how care is allocated among network members. We also examine the implications of network structure for caregiver well-being including anxiety, depression, and hopefulness. We use latent profile analysis to identify three classes of caregiving networks: (1) Large, sparse networks with relatively few kin and only some people assisting with caregiving tasks for care recipients; (2) Moderately-sized, somewhat dense, kin-based networks; (3) Small, very dense kin networks where caregiving is shared across network members. Caregivers who are male, highly-educated, and providing care for someone with dementia are disproportionately in Class 1. Being in Class 3 is significantly associated with lower caregiver anxiety compared to being in the other two groups, even after controlling for sociodemographic factors, but not with depression and hopefulness. This work has implications for the optimal network structure for facilitating the well-being of family caregivers, and provides a baseline for examining network change and the implications thereof as the impact of the pandemic wanes.

THEORETICALLY BASED FACTORS ASSOCIATED WITH STROKE FAMILY CAREGIVER HEALTH

Abstract Background Most stroke survivors are cared for at home by family members, many of whom experience depressive symptoms and life changes as a result of providing care. While many studies have explored the factors associated with depressive symptoms and quality of life in family caregivers, few have focused on caregiver health. Purpose: To determine theoretically based factors associated with unhealthy days in stroke family caregivers. Methods A conceptual model derived from Lazarus’ theory of stress and coping was used to guide analysis. Secondary data analysis was conducted using baseline data from a large randomized controlled clinical trial testing the Telephone Assessment and Skill-building Kit (TASK II) program with 254 family caregivers of stroke survivors within 2 weeks of discharge from acute care and rehabilitation settings in participating Midwestern facilities. Data were analyzed using multiple regression with unhealthy days as the dependent variable, and theoretically based factors (i.e., caregiver task difficulty, level of optimism, threat appraisal, depressive symptoms, and life changes) as independent variables. All scales demonstrated evidence of internal consistency reliability with Cronbach alpha scores above .70. Results Caregivers were mostly female (78%), white (71%), spouses (47%) or adult children (30%). Caregivers reported 9 unhealthy days on average within the past month. Unhealthy days were significantly correlated with caregiver task difficulty (r=.32), level of optimism (r=-.29), threat appraisal (r=.44), depressive symptoms (r=.60), and life changes (r=-.40) (p<.05). 37.8% variance in unhealthy days was explained, with depressive symptoms being the only significant individual predictor due to shared variance.

"God gave you a special child because you are special": difficulties, coping strategies, and parental burnout of Jewish mothers - a qualitative study.

"Parental Burnout" is a specific syndrome resulting from an imbalance between continuous exposure to chronic parenting stress and available protective resources. Mothers of children with special needs have an increased risk of Parental Burnout due to dealing with various difficulties from carrying out long-term childcare. To examine difficulties, coping strategies, and PB (risk factors and protective resources), among ultra-Orthodox and non-Orthodox Jewish mothers of children with special needs with high or low levels of Parental Burnout. A qualitative study. Twelve mothers of children with special needs identified with high or low Parental Burnout via a quantitative study were interviewed. The constant-comparative analysis method was used to analyze the findings. Three themes and twelve categories emerged: 1. Difficulties involved in motherhood with six categories: (a) caregiver burden, (b) task overload, (c) physical and mental self-neglect, (d) environmental, couple-hood, family and social neglect, (e) recognizing the gap between their child with special needs and other children of the same age, (f) the environment's contradictory expectations from the mother; 2. Coping strategies with four categories: (a) practical, (b) spiritual, (c) social and (d) emotional; and 3. Parental Burnout, consequences and coping with two categories: (a) personal and environmental risk factors (e.g., fear of the future, difficulty in trusting others in taking care of their child), and (b) personal and environmental protective resources (e.g., sharing similar circumstances with other mothers, a belief in God). The findings contribute to understanding the unique difficulties, coping strategies and differences in risk factors and protective resources of Parental Burnout among ultra-Orthodox and non-Orthodox Jewish mothers of children with special needs. In order to alleviate the difficulties experienced by mothers and thus also reduce Parental Burnout risk factors and provide effective protective resources, it is recommended to develop empirically based professional guidance for policymakers, child development specialists, nurses, physiotherapists, and informal caregivers.

Effect of an eHealth intervention to support care management in caregivers of people with dementia: a pre‐post pilot study

AbstractBackgroundMost people with dementia are cared for by family members. The workload associated with caregiving tasks is often associated with physical, mental, and social impairment. In line with the WHO’s Global Action Plan on Dementia 2017‐2025 (WHO, 2017), calling for the provision of affordable and accessible interventions for dementia caregivers, we tested an eHealth intervention to improve self‐efficacy and mental health in dementia caregivers.Method8‐week eHealth psycho‐educational intervention aiming at increasing the knowledge of neurocognitive disorders, their at‐home management, and the presence of national and local support services. The intervention was conducted by an experienced psychotherapist assisted by a professional expert (e.g., geriatrician, educator, social worker, lawyer and advocacy patient organisations), according to the topic of each meeting. A pre‐post study design was used and validated psychosocial self‐report questionnaires were administered before and after the intervention (e.g., State‐Trait Anxiety Inventory ‐STAI‐Y1‐2, Zarit Burden Interview ‐ZBI, Beck Depression Inventory‐II BDI‐II, Revised Scale of Caregiving Self‐Efficacy ‐RSCSE). Pre‐post differences were tested with paired t‐test, correlations between scales with Pearson correlation coefficientResult41 caregivers (mean age: 57; range 31‐82; female: 78%; children: 61%) completed the study. The intervention had high participation (88% attended at least seven meetings). Following the intervention, the self‐efficacy regarding the ability to respond to the patient’s disruptive behaviours effectively improved (RSCSE‐RDB subscale: t(40) = ‐2.817, p = 0.007), anxiety and burden levels decreased (STAI‐Y1: t(40) = 3.170, p = 0.003; STAI‐Y2: t(40) = 2.327, p = 0.025; ZBI: t(40) = 2.290, p = 0.027), while depression scores did not change significantly (BDI‐II: t(40) = 1.164, p = 0.251). Correlation analysis showed that the change of STAI‐Y1 was positively associated with the change of STAY‐Y2 (r = 0.440, p = 0.004), and the increase of RSCE‐RDB subscale was positively associated with the improvement of caregiver burden (r = 0.430, p = 0.005).ConclusionOur study showed that the eHealth intervention improved the caregiver’s ability to deal effectively with the disruptive behaviours of patients, and this change was associated with a reduction of caregiver burden. The results and participation rates support the implementation of online psycho‐educational interventions to meet the need for knowledge of disease management and avoid detrimental effects on caregivers’ health.

Effect of an eHealth intervention to support care management in caregivers of people with dementia: a pre‐post pilot study

AbstractBackgroundMost people with dementia are cared for by family members. The workload associated with caregiving tasks is often associated with physical, mental, and social impairment. In line with the WHO’s Global Action Plan on Dementia 2017‐2025 (WHO, 2017), calling for the provision of affordable and accessible interventions for dementia caregivers, we tested an eHealth intervention to improve self‐efficacy and mental health in dementia caregivers.Method8‐week eHealth psycho‐educational intervention aiming at increasing the knowledge of neurocognitive disorders, their at‐home management, and the presence of national and local support services. The intervention was conducted by an experienced psychotherapist assisted by a professional expert (e.g., geriatrician, educator, social worker, lawyer and advocacy patient organisations), according to the topic of each meeting. A pre‐post study design was used and validated psychosocial self‐report questionnaires were administered before and after the intervention (e.g., State‐Trait Anxiety Inventory ‐STAI‐Y1‐2, Zarit Burden Interview ‐ZBI, Beck Depression Inventory‐II BDI‐II, Revised Scale of Caregiving Self‐Efficacy ‐RSCSE). Pre‐post differences were tested with paired t‐test, correlations between scales with Pearson correlation coefficientResult41 caregivers (mean age: 57; range 31‐82; female: 78%; children: 61%) completed the study. The intervention had high participation (88% attended at least seven meetings). Following the intervention, the self‐efficacy regarding the ability to respond to the patient’s disruptive behaviours effectively improved (RSCSE‐RDB subscale: t(40) = ‐2.817, p = 0.007), anxiety and burden levels decreased (STAI‐Y1: t(40) = 3.170, p = 0.003; STAI‐Y2: t(40) = 2.327, p = 0.025; ZBI: t(40) = 2.290, p = 0.027), while depression scores did not change significantly (BDI‐II: t(40) = 1.164, p = 0.251). Correlation analysis showed that the change of STAI‐Y1 was positively associated with the change of STAY‐Y2 (r = 0.440, p = 0.004), and the increase of RSCE‐RDB subscale was positively associated with the improvement of caregiver burden (r = 0.430, p = 0.005).ConclusionOur study showed that the eHealth intervention improved the caregiver’s ability to deal effectively with the disruptive behaviours of patients, and this change was associated with a reduction of caregiver burden. The results and participation rates support the implementation of online psycho‐educational interventions to meet the need for knowledge of disease management and avoid detrimental effects on caregivers’ health.

How Gender Shapes Sibling Tension in Adulthood Following Parental Death.

This study investigates gender differences in the effect of parents' deaths on sibling tension among bereaved adult children. Previous scholarship on adult sibling relations following the deaths of parents presents inconsistent results. These disparate findings may stem from past studies not taking into consideration the gender of both the deceased parent and the bereaved child. Analyses are based on three harmonized waves of quantitative and qualitative data collected from 654 adult children nested within 303 families as part of the Within-Family Differences Study. Multilevel models revealed that for daughters, but not sons, mothers' deaths in the past five years were associated with increases in sibling tension, whereas fathers' deaths did not predict changes in either sons' or daughters' sibling tension, regardless of timing. Qualitative analyses showed marked differences by child's gender in perceptions of patterns of shared work and support surrounding parents' deaths. Typically, sons expressed solidarity with siblings when mothers died and felt that the division of caregiving prior to mothers' deaths and arrangements following their deaths were fair. In contrast, daughters expressed increased solidarity with sisters surrounding mothers' deaths and disdain toward brothers who failed to contribute caregiving, support, or instrumental tasks. These findings underscore how gender of both parents and adult children differentially shape changes in adult children's relationships with their siblings in the face parental deaths, much as they do in other contexts across the life course.

Caring through Graphic Medicine

AbstractBackgroundHumanity is developed with language and memory. Memory gives us personality, emotional intelligence, family relations, and community. Alzheimer’s is a type of dementia that causes problems with memory, thinking and behavior. Symptoms usually develop slowly and get worse over time, becoming severe enough to interfere with daily tasks. There is a notion that caregiving for patients is the primary responsibility of female family members.Certainly, caregiving has been associated with women, at least since it was incorporated into the emerging feminine sphere of domesticity in nineteenth‐century notions of gendered separate spheres.Physical nature of female and emotional strength are also centered on caring. All over the world women are the predominant providers of informal care for family members with chronic medical conditions or disabilities, including the elderly and adults with mental illnesses. It has been suggested that there are several societal and cultural demands on women to adopt the role of a family‐caregiver. Many theories propose that women are more likely to be exposed to caregiving stressors.This study explores how challenges of care giving Alzheimer/Dementia patients affect the caregiver especially female care givers in multiple perspectives. The activity of care giving involves economic, social and psychological impact not only on the care recipient but also the care giver, who devotes the entire period of care giving sacrificing the personal needs and ambitions.MethodPrimary data were collected from caregivers located in different parts of India.Secondary data from Govt agencies were also used for analysis. Wherever possible case studies were conducted and also personal interviews with family members. Analysis was effected through SPSS with relelevant inputs.ResultPost Covid caregiving has become a challenging task for caregivers especially female caregivers throughout the world.As there was slowdown in economic activity, challenges commuted in terms of finance,emotions and moral support.ConclusionThere is a need for understanding the issues involved in caregiving and appropriate steps are to be initiated for provision of adequate support from the Govt and also the social responsibility has to be properly propogated among all sections of the society.

Hospital‐to‐home care transition for dementia patients and family care partners: communication, decision‐making, and support experience of a culturally diverse sample

AbstractBackgroundPersons living with dementia (PLWD) are twice as likely to be hospitalized than non‐dementia peers, and while hospitalized, more likely to suffer from delirium, falls, procedure‐related complications, and death. PLWDs and their care partners (CPs) need support and preparation for hospital‐to‐home transition to avoid unnecessary readmission to hospitals. The current study aims to identify and examine communication, decision‐making, and caregiver support experience of racially and financially diverse PLWDs/CP dyads during hospital‐to‐home care transition in the U.S.MethodWe analyzed preliminary data from an ongoing mixed methods study of care transition experience of hospitalized PLWD/CP dyads. We used survey and hospital case notes data from 22 dyads and in‐depth interviews with 12 CPs recruited from two urban hospitals. We conducted descriptive and content analysis with quantitative and qualitative data.ResultHalf of PLWDs were non‐white (50%), frail with recent history of fall (68%) or hospitalization (50%) in the last three months, lacked advance directives (46%), and received palliative care consult while hospitalized (77%). Majority of CPs were non‐White (68%), PLWD’s adult child/grandchild (64%), and reported knowing a little or not much at all about dementia (82%). Themes on CP communication, decision‐making and caregiving support emerged: CPs find surrogate decision‐making difficult; proactive palliative care prepares CPs for terminal trajectory of dementia; CPs need education and training on hands‐on caregiving tasks to keep PLWDs safe and comfortable at home; and CPs’ social needs need to be addressed to achieve goals of care for PLWDs.ConclusionPLWDs and CPs need education, training, coaching, and individualized support during care transitions in order to develop self‐efficacy and maintain resilience. Palliative care, currently offered in over 80% of U.S. hospitals, provides important education and support for PLWDs and CPs. However, palliative care support ends after discharge for most families. Findings from our study suggest that continuing comprehensive palliative care support after discharge may be needed, when PLWD and CPs may need support the most. Future studies should examine needs of PLWDs and CPs living in communities and the role of palliative care to address informational and support needs.

Evaluation of repositioning care provided by non-professionals using a caregiver-assistive device: an experimental study

As the population ages in Japan and worldwide, the number of informal caregivers, such as family members, providing nursing care to older individuals is increasing. Among caregiving tasks, repositioning care, which causes lower back pain, is frequent and burdensome for caregivers. Therefore, we developed a position-changing device that can adjust and support the care recipient’s body in the lateral position. This was a feasibility study of the device-assisted care provided by non-professionals using the device we developed. Of the 40 healthy volunteers enrolled, 17 simulated caregivers and 17 simulated care recipients finally participated in the study. One caregiver and one care recipient were paired to engage in two types of care: device-assisted care and manual care. Furthermore, the care provided by the caregiver and received by the care recipient were evaluated. Non-professionals were able to use the device successfully and safely after a short period of practice, and both caregivers and care recipients rated the device-assisted care positively. The study results suggest that informal caregivers can also provide safe and comfortable care that is less burdensome than manual care by using a caregiver-assistive device.

Is Teleworking an Opportunity for Male `Joint Responsibility´ at Home?: Egalitarian Men during the Pandemic in Spain

The COVID-19 crisis spurred a large increase in teleworking, with inherent consequences for the use and distribution of time spent on paid, domestic, and caregiving work. This article aims to contribute to the knowledge about the material and symbolic conditions that fostered joint responsibility among men who telecommuted during the lockdown period. A qualitative study of the Spanish case was conducted, based on 25 interviews with different profiles of men, in terms of life cycle and job category, who teleworked during the first months of the pandemic. The results showed a more egalitarian male profile, as telecommuting encouraged men to take joint responsibility within the household. These were fathers with a mid-category job who telecommuted and had young children at home while their partner worked outside the home. All these conditions fostered their greater involvement in domestic and caregiving tasks, which involved internalizing the daily management, organization and planning practices typical of the traditional female role.

Visualization of Caregiving Posture and Risk Evaluation of Discomfort and Injury

There is a high risk of musculoskeletal discomfort and injury due to the lack of professional guidance and training in caregiving postures. This study aimed to develop a risk assessment and visualization method by analyzing caregiving postures. Participants with (n = 8) and without (n = 10) caregiving experience were recruited to simulate patient transfer from bed to wheelchair. The Rapid Entire Body Assessment (REBA) method lacked sensitivity in distinguishing the experienced and inexperienced groups. We found that the visualization of the center of gravity (COG) trajectory could represent distinct posture differences between the two groups. Based on this finding, we considered a modified REBA method combining the COG trajectory, load-bearing time, and asymmetric load parameters, named the Caregiving-REBA (C-REBA) method. Our results demonstrated that C-REBA could effectively distinguish experienced and inexperienced caregivers, especially in caregiving task Stages 2–4. In conclusion, the present work explored adjusting to the parameters of the REBA method. The proposed C-REBA method could be easily imbedded into the Internet of Things (IoT) device to assess the caregiving posture for providing visual guidance and warning of the risk of discomfort or injury.

SOURCE, a learned resourcefulness program to reduce caregiver burden and improve quality of life for older family caregivers

AbstractBackgroundFamily members often undertake caregiving responsibilities over long periods of time, which could lead to caregiving burden. A theory‐based and culturally sensitive learned resourcefulness program may help family caregivers mitigate stress by learning and using self‐help strategies.ObjectivesThis study's aim is to use rigorous methods to investigate the effects of a learned resourcefulness program called SOURCE (Chen et al., Geriatric Nursing, 2021, 45, 1129) to reduce caregiver burden and improve quality of life (QOL) for family caregivers. SOURCE is an acronym for the six self‐help behaviors at the core of this theory‐based learned resourcefulness program, developed by the Principal Investigator (PI) in collaboration with other researchers (Chen et al., Geriatric Nursing, 2021, 45, 1129). These behaviors are: seeking problem‐solving strategies, organizing daily actions, using self‐regulation, reframing positive situations, changing negative self‐thinking, and exploring new thinking and skills.MethodsWe used a quasi‐experimental design with repeated measures for this study. The potential subjects were family caregivers whose family member was receiving home care. PI recruited 94 family caregivers (60 years old or older) who were caring for disabled and/or ill family members who also were 60 years old or older and living at home at the time of the study. The PI recruited these caregivers through the home care services department of a hospital and two community healthcare centers in Taiwan. The experimental group (n = 46) received the four‐week in‐person SOURCE while their family member continued to receive home care services, whereas the control group (n = 48) did not receive the SOURCE program while their family member received home care services. We collected data from the participants using the Caregiver Burden Scale, EuroQol‐5 Dimension, and Rosenbaum's Self‐Control Scale at baseline (T0, Week 1), after the intervention (T1, Week 5), and at follow‐up (T2, Week 9). We analyzed the data using paired‐sample t‐tests and used the generalized estimating equation method to compare paired data between the baseline and follow‐up.ResultsOf the 94 recruited family caregivers, 90.4% (n = 85) completed the study. We found no significant differences between the experimental and control groups in terms of demographic, caregiver burden, and QOL variables at baseline. Compared to the control group, the experimental group had significantly improved caregiver burden scores (indicating a reduction in caregiver burden) at the end of the intervention and at follow‐up. The experimental group had significantly improved QOL scores at follow‐up only. The experimental group also showed high levels of adherence to and satisfaction with the intervention. The paired‐sample t‐test results show significantly improved learned resourcefulness between T0 and T1 and between T0 and T2 (t = −5.84, p < 0.001; t = −6.77, p < 0.001) for the experimental group.ConclusionThe SOURCE program helped family caregivers develop and use self‐help behaviors during their daily caregiving tasks. The family caregivers reported satisfaction with the program as well as reduced caregiver burden and improved QOL after the program ended.Implications for practiceThe SOURCE program can be implemented to improve family caregivers' caregiver burden and QOL. Community health nurses can improve self‐help abilities of family caregivers by helping them to acquire abilities and skills that allow them to effectively handle stress and reduce their caregiver burden.

Abstract 15394: Caregivers’ Growing Contributions to Heart Failure Self-Care: An Updated Systematic Review

Introduction: In 2015, a seminal systematic review captured the body of literature surrounding the contributions of family caregivers to heart failure (HF) self-care. Since then, the body of HF caregiving research has expanded, necessitating an updated systematic review to inform research, practice, and policy. Goals: To provide an updated systematic review of the empiric literature on informal, unpaid caregivers contributions to HF patients’ self-care. Research Questions: 1) What specific activities do caregivers of people with HF take part in related to HF self-care?; 2) Have these caregiving activities changed over time?; 3) What are the gaps in the science? Methods: The review followed PRISMA guidelines; the protocol was pre-registered in PROSPERO. Comprehensive database search strategies were developed (PubMed, CINAHL, Embase, and Cochrane CENTRAL). The team independently screened and abstracted data; quality was assessed using CASP checklists. Meta-synthesis techniques using critical realist approaches were used to interpret activities, then relationships were analyzed. During data synthesis, activities were benchmarked against the Theory of Self-care in Chronic Illness (TSCI). Results: In total, 2154 research reports were identified, 64 of which were eligible for inclusion (2013-2022). Caregiver contributions to HF self-care activities occurred in TCSI domains of self-care maintenance (91%), monitoring (54%), and management (46%). Activities performed directly on or to the patient were reported more frequently than those performed for the patient. Frequently reported activities like transportation and activity of daily living are not included by the TCSI. Gaps due to ambiguous activity descriptions, inadequate caregiving time quantification, and underrepresented monitoring, supportive, and communication activities were elucidated. Conclusions: Findings support updating the TSCI to include activities antecedent to HF self-care. Identified gaps highlight the need to define specific caregiving activities, determine caregiver task difficulty and burden, and identify caregiver self-care strategy and education needs. The critical need to expose the hidden work of caregiving is essential to inform policy and practice.

Understanding the mix of services for mental health care in urban DR Congo: a qualitative descriptive study

BackgroundMental health workers (MHWs) are exposed to conflicts of competence daily when performing tasks related to the provision of mental health services. This may be linked to a lack of understanding of their tasks as caregivers and providers. Furthermore, in most low-income settings, it is unclear how the available services are organized and coordinated to provide mental health care. To understand the above, this study aimed to identify the current mix of services for mental health care in the urban Democratic Republic of the Congo (DRC).MethodsA qualitative descriptive study was carried out in Lubumbashi from February to April 2021. We conducted 7 focus group discussions (FGDs) with 74 key informants (family members, primary care physicians, etc.) and 13 in-depth interviews (IDIs) with key informants (traditional healers, psychiatrists, etc.). We performed a qualitative content analysis, guided by an analytical framework, that led to the development of a comprehensive inventory of MHWs from the household level to specialized facilities, exploring their tasks in care delivery, identifying existing services, and defining their current organization.ResultsAnalysis of transcripts from the FGDs and IDIs showed that traditional healers and family caregivers are the leading providers in Lubumbashi. The exploration of the tasks performed by MHWs revealed that lifestyle, traditional therapies, psychotherapy, and medication are the main types of care offered/advised to patients. Active informal caregivers do not currently provide care corresponding to their competencies. The rare mental health specialists available do not presently recognize the tasks of primary care providers and informal caregivers in care delivery, and their contribution is considered marginal. We identified five types of services: informal services, traditional therapy services, social services, primary care services, and psychiatric services. Analyses pointed out an inversion of the ideal mix of these services.ConclusionsOur findings show a suboptimal mix of services for mental health and point to a clear lack of collaboration between MHWs. There is an urgent need to clearly define the tasks of MHWs, build the capacity of nonspecialists, shift mental health-related tasks to them, and raise awareness about collaborative care approaches.