Care Recipients Research Articles

Receiving home care forms and the risk for emergency department visits in community-dwelling Dutch older adults, a retrospective cohort study using national data

BackgroundOlder adults receiving home care have a higher risk of visiting the emergency department (ED) than community-dwelling older adults not receiving home care. This may result from a higher incidence of comorbidities and reduced functional autonomy in home care recipients. Since people receive different types of home care because of their different comorbidities and autonomy profiles, it is possible that distinguishing between the form of home care can help identify subpopulations with different risks for ED visits and help develop targeted interventions. This study aimed to compare the risk of visiting the ED in older adults receiving different forms of home care with those living at home without receiving home care in a national cohort in one year.MethodsA retrospective cohort study using claims data collected in 2019 on the Dutch population aged ≥ 65 years (N = 3,314,440) was conducted. Participants were classified as follows: no claimed home care (NO), household help (HH), personal care (PC), HH + PC, and nursing home care at home (NHH). The primary outcome was the number of individuals that visited the ED. Secondary outcomes were the number of individuals whose home care changed, who were institutionalized, or who died. Exploratory logistic regression was applied.ResultsThere were 2,758,093 adults in the NO group, 131,260 in the HH group, 154,462 in the PC group, 96,526 in the HH + PC group, and 34,612 in the NHH group. More ED visits were observed in the home care groups than in the NO group, and this risk increased to more than two-fold for the PC groups. There was a significant change to a more intensive form of home care, institutionalization, or death in all groups.ConclusionsDistinguishing between the form of home care older adults receive identifies subpopulations with different risks for ED visits compared with community-dwelling older adults not receiving home care on a population level. Home care transitions are frequent and mostly involve more intensive care or death. Although older adults not receiving home care have a lower risk of ED visits, they contribute most to the absolute volume of ED visits.

Caregiver recruitment strategies for interventions designed to optimize transitions from hospital to home: lessons from a randomized trial

Challenges to recruitment of family caregivers exist and are amplified when consent must occur in the context of chaotic healthcare circumstances, such as the transition from hospital to home. The onset of the COVID-19 pandemic during our randomized controlled trial provided an opportunity for a natural experiment exploring and examining different consent processes for caregiver recruitment. The purpose of this publication is to describe different recruitment processes (in-person versus virtual) and compare diversity in recruitment rates in the context of a care recipient’s hospitalization. We found rates of family caregiver recruitment for in-person versus virtual were 28% and 23%, respectively (p = 0.01). Differences existed across groups with family caregivers recruited virtually being more likely to be younger, white, have greater than high school education, and not be a spouse or significant other to the care recipient, such as a child. Future work is still needed to identify the modality and timing of family caregiver recruitment to maximize rates and enhance the representativeness of the population for equitable impact.

Multimorbidity and associated informal care receiving characteristics for US older adults: a latent class analysis

BackgroundOlder adults with varying patterns of multimorbidity may require distinct types of care and rely on informal caregiving to meet their care needs. This study aims to identify groups of older adults with distinct, empirically-determined multimorbidity patterns and compare characteristics of informal care received among estimated classes.MethodsData are from the 2011 National Health and Aging Trends Study (NHATS). Ten chronic conditions were included to estimate multimorbidity patterns among 7532 individuals using latent class analysis. Multinomial logistic regression model was estimated to examine the association between sociodemographic characteristics, health status and lifestyle variables, care-receiving characteristics and latent class membership.ResultsA four-class solution identified the following multimorbidity groups: some somatic conditions with moderate cognitive impairment (30%), cardiometabolic (25%), musculoskeletal (24%), and multisystem (21%). Compared with those who reported receiving no help, care recipients who received help with household activities only (OR = 1.44, 95% CI 1.05–1.98), mobility but not self-care (OR = 1.63, 95% CI 1.05–2.53), or self-care but not mobility (OR = 2.07, 95% CI 1.29–3.31) had greater likelihood of being in the multisystem group versus the some-somatic group. Having more caregivers was associated with higher odds of being in the multisystem group compared with the some-somatic group (OR = 1.09, 95% CI 1.00-1.18), whereas receiving help from paid helpers was associated with lower odds of being in the multisystem group (OR = 0.36, 95% CI 0.19–0.77).ConclusionsResults highlighted different care needs among persons with distinct combinations of multimorbidity, in particular the wide range of informal needs among older adults with multisystem multimorbidity. Policies and interventions should recognize the differential care needs associated with multimorbidity patterns to better provide person-centered care.

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

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

Recuperation Tourism from Healers’ and Care Recipients’ Perspectives: A Qualitative Study

Recuperation Tourism from Healers’ and Care Recipients’ Perspectives: A Qualitative Study

Examining predictors of loneliness among Older Americans Act National Family Caregiver Support Program participants.

Family caregivers may be at particular risk for social isolation and loneliness. Multiple factors can impact caregivers' health and well-being outcomes, including loneliness. Guided by an adaptation of the Stress Process Model of Caregiving, this study uses the 2019 National Survey of Older Americans Act Participants (NSOAAP)-Family Caregiver Support module to inform efforts to reduce loneliness through family caregiver support programs. A hierarchical multiple regression model reveals that caregivers who report more loneliness are more likely to be female, Hispanic, living alone, not a child or other caregiver of the care recipient, have a care recipient with 3+ ADL needs, experience more social life conflict related to caregiving, experience less joy in caregiving, feel less appreciated by the care recipient, feel less support in caregiving, and attend counseling. This study helps advance the goals of the National Strategy to Support Family Caregivers, and the findings underscore the importance of continuing and expanding efforts to address loneliness and related well-being outcomes among family caregivers.

Development and validation of a health literacy scale for family caregivers of older people with chronic illness

BackgroundFamily caregivers (FCs) encounter a variety of health problems in older people with chronic illness, necessitating a certain level of health literacy to access, understand, appraise and apply health information and services. This study aimed to develop and validate a scale for measuring health literacy among FCs of older people with chronic illness.MethodsConcept mapping was first employed to develop a conceptual model of health literacy of FCs. Scale domains were derived from the conceptual model, and item generation was performed using deductive and inductive methods. Quantitative methods, including merging scale dimensions and items, expert reviews, cognitive interviews, and item reduction analysis, were used to refine the scale. Confirmatory factor analysis was employed to validate the scale’s structure. Concurrent validity, internal consistency, and test-retest reliability were also examined.ResultsA 20-dimension conceptual model was developed, and 60 items were generated for the scale. Expert review (content validity index > 0.85) and cognitive interview with FCs confirmed the relevance and clarity of the majority of the generated scale items. Confirmatory factor analysis with 451 FCs of older people with chronic illness supported a 5-factor structure (symptom management, daily personal care and household tasks, care coordination, communication and relationship with the care recipient, and self-care of caregivers) with 42 finalized scale items, including four levels of health literacy skills (accessing, understanding, appraising and applying health information). Concurrent validity with the European Health Literacy Questionnaire (HLS-EU-Q47) was satisfactory (r = 0.67, p < 0.01). The Cronbach’s α coefficient of the scale was 0.96, with subscales ranging from 0.84 to 0.91. The two-week test-retest reliability was 0.77 (p < 0.01).ConclusionThis study developed a conceptual model explaining the concept and factors of health literacy among FCs of older people with chronic illness that could provide the groundwork for future studies in developing relevant evidence-based interventions. A new Health Literacy Scale-Family Caregiver (HLS-FC) with satisfactory psychometric properties was developed in this study, which can be utilized to identify caregivers with insufficient health literacy and facilitate timely interventions by healthcare professionals.

Protocol for a telephonic mixed methods study to understand needs and find solutions for bereaved dementia caregivers

IntroductionMost caregivers of people living with dementia will experience bereavement within 10 years, but study of and support for their needs rarely persists following the death of their care recipients....

Defining community-led monitoring and its role in programme-embedded learning: lessons from the Citizen Science Project in Malawi and South Africa.

Programme Science (PS) and community-led monitoring (CLM) intersect in unexpected and promising ways. This commentary examines a CLM initiative in Malawi and South Africa to highlight the crucial role of CLM in bolstering the PS framework. By leveraging data sources often overlooked by conventional research and evaluation approaches, CLM emerges as a pivotal element in enhancing programme effectiveness. This paper delineates the fundamental principles of CLM, presents programme outcomes derived from CLM methodologies and contextualizes these findings within the broader framework of PS. The Citizen Science Project implements CLM continuously at 33 health facilities: 14 in Malawi (eight in Kasungu District and six in Dedza District), and 19 in South Africa (all in the West Rand District), representing a total catchment area of 989,848 people. Monitoring indicators are developed in an iterative process with community groups. The indicators are unique to each country, but both focus on the uptake of health services (quantitative) and barriers to access (qualitative). Monthly clinic records surveys capture 34 indicators in Malawi and 20 in South Africa and are supplemented by qualitative interviews with care recipients and healthcare workers. Qualitative interviews provide additional granularity and help confirm and explain the more macro trends in service coverage as described in quantitative data. The resulting data analysis reveals key themes that help stakeholders and decision-makers to solve problems collaboratively. Noteworthy outcomes include a substantial increase in multi-month dispensing of antiretroviral therapy (ART) during COVID-19 (from 6% to 31%) with a subsequent recovery surpassing of HIV service benchmarks in Malawi post-pandemic. While quantifying direct impact remains challenging due to the project's design, CLM proves to be a robust methodology that generates credible data and produces impactful outcomes. Its potential extends beyond the health sector, empowering community leadership and fostering interventions aligned with community needs. As CLM continues to evolve, its integration into PS promises to improve relevance, quality and impact across diverse disciplines.

Relationship Between Pastoral Care and The Anxiety Level of Preoperative Patients at Santa Elisabeth Hospital Medan

Background: Anxiety is restlessness and helplessness, especially when illness occurs after surgery, and supports pastoral care to help patients be comfortable and at ease. The aim of study was to determine the relationship between pastoral care and anxiety levels in preoperative patients at Hospital Santa Elisabeth Medan. Methods: The Methods of research is a quantitative and cross-sectional study. The population of this study was all preoperative subjects. The sample size was 71 people. The research instrument is the APAIS questionnaire (Amsterdam Preoperative Anxiety and Information Scale). The Amsterdam Preoperative Information and Anxiety Scale (APAIS) is one of the designs designed to assess the causes of anxiety before the operation, a tool was created to warn workers to assess the individual's risk. Results: The results showed that most of the recipients of pastoral care were in the good category (90.1%) and the majority in the emergency category (49.3%). Data analysis used Spearman's rank test for univariate and bivariate variables. Conclusion Spearman's level statistical test (rho) showed a value of r = (0.520) and the strength of the relationship resulted in a significant p-value = 0.000(p &lt;0.05). Conclusions: The conclusion of this study is expressed that there's a relationship between peaceful bolster and uneasiness levels of patients some time recently surgery at Santa Elisabeth Clinic Medan and great peaceful care can diminish anxiety levels in patients who will experience surgery.

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

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

Understanding and alleviating informal caregiver burden through the development and validation of a caregiver strain index-based model in Taiwan

BackgroundQuantifying the informal caregiver burden is important for understanding the risk factors associated with caregiver overload and for evaluating the effectiveness of services provided in Long-term Care (LTC).ObjectiveThis study aimed to develop and validate a Caregiver Strain Index (CSI)-based score for quantifying the informal caregiver burden, while the original dataset did not fully cover evaluation items commonly included in international assessments. Subsequently, we utilized the CSI-based score to pinpoint key caregiver burden risk factors, examine the initial timing of LTC services adoption, and assess the impact of LTC services on reducing caregiver burden.MethodsThe study analyzed over 28,000 LTC cases in Southern Taiwan from August 2019 to December 2022. Through multiple regression analysis, we identified significant risk factors associated with caregiver burden and examined changes in this burden after utilizing various services. Survival analysis was employed to explore the relationship between adopting the first LTC services and varying levels of caregiver burden.ResultsWe identified 126 significant risk factors for caregiver burden. The most critical factors included caregiving for other disabled family members or children under the age of three (β = 0.74, p < 0.001), the employment status of the caregiver (β = 0.30–0.53, p < 0.001), the frailty of the care recipient (β = 0.28–0.31, p < 0.001), and the behavioral symptoms of dementia in care recipients (β = 0.28–2.60, p < 0.05). Generally, caregivers facing higher burdens sought LTC services earlier, and providing home care services alleviated the caregiver’s burden.ConclusionThis comprehensive study suggests policy refinements to recognize high-risk caregivers better early and provide timely support to improve the overall well-being of both informal caregivers and care recipients.

WHO, WHEN, HOW: a scoping review on flexible at-home respite for informal caregivers of older adults

BackgroundAs the world population is aging, considerable efforts need to be put towards developing and maintaining evidenced-based care for older adults. Respite services are part of the selection of homecare offered to informal caregivers. Although current best practices around respite are rooted in person centeredness, there is no integrated synthesis of its flexible components. Such a synthesis could offer a better understanding of key characteristics of flexible respite and, as such, support its implementation and use.MethodsTo map the literature around the characteristics of flexible at-home respite for informal caregivers of older adults, a scoping study was conducted. Qualitative data from the review was analyzed using content analysis. The characterization of flexible at-home respite was built on three dimensions: WHO, WHEN and HOW. To triangulate the scoping results, an online questionnaire was distributed to homecare providers and informal caregivers of older adults.ResultsA total of 42 documents were included in the review. The questionnaire was completed by 105 participants. The results summarize the characteristics of flexible at-home respite found in the literature. Flexibility in respite can be understood through three dimensions: (1) WHO is tendering it, (2) WHEN it is tendered and (3) HOW it is tendered. Firstly, human resources (WHO) must be compatible with the homecare sector as well as being trained and qualified to offer respite to informal caregivers of older adults. Secondly, flexible respite includes considerations of time, duration, frequency, and predictability (WHEN). Lastly, flexible at-home respite exhibits approachability, appropriateness, affordability, availability, and acceptability (HOW). Overall, flexible at-home respite adjusts to the needs of the informal caregiver and care recipient in terms of WHO, WHEN, and HOW.ConclusionThis review is a step towards a more precise definition of flexible at-home respite. Flexibility of homecare, in particular respite, must be considered when designing, implementing and evaluating services.

Why is the composition of older adults’ care network associated with psychological wellbeing: an application of the self-determination theory

Objectives Older care recipients have different types of care networks, varying from spouse-only to large mixed care networks, that add to different levels of wellbeing. Applying Self-Determination Theory (SDT) to the care context, we argue that the care network composition may foster or hamper the three basic needs for wellbeing: relatedness, autonomy and competence. Method Data are from ten observations between 1992 and 2022 of the Longitudinal Aging Study Amsterdam (N = 18,434 observations from 4,837 older Dutch adults). Five care network types are used: no care, partner, informal, formal or privately paid care. Mixed-hybrid-multilevel regression analysis of depressive symptoms as measure of wellbeing is applied on care network type and loneliness, mastery and care sufficiency as indicators of the three basic needs for wellbeing. Results Receiving care from a partner care network is, compared to the formal care network, the most negatively associated with depressive symptoms, followed by informal care and privately paid care. Differences in care network types existed in loneliness and care sufficiency, but not in mastery, and in part explained the association between care network types and depressive symptoms. Results of between and within effects are comparable. Conclusion Using a rich data set and advanced methodology support the hypotheses that formal care networks hamper wellbeing due to insufficient care and increased loneliness, in particular compared to partner and informal care. The role of mastery was less important, possibly because it does not measure care related level of control.

Quality of life outcomes for informal carers of long-term care service users in Austria, England and Finland

PurposeThe provision and funding of long-term care (LTC) for older people varies between European countries. Despite differences, there is limited information about the comparative performance of LTC systems in Europe. In this study, we compared quality of life (QoL) of informal carers of home care service users in Austria, England and Finland.MethodsInformal carers were surveyed in Austria, England and Finland. The study data (n = 835) contained information on social care-related quality of life (SCRQoL) associated with the ASCOT-Carer measure, and characteristics of carers and care recipients from each country. We applied risk-adjustment methods using a fractional regression model to produce risk-adjusted SCRQoL scores for the comparative analysis. In a sensitivity analysis, we applied multiple imputation to missing data to validate our findings.ResultsWe found that the mean values of the risk-adjusted SCRQoL of informal carers in England were 1.4–2.9% and 0.3–0.5% higher than in Finland and Austria, and the mean values of the risk-adjusted SCRQoL of carers in Austria were 0.8–2.7% higher than in Finland. Differences in the mean values of the country-specific risk-adjusted SCRQoL scores were small and statistically non-significant. English informal carers were less healthy and co-resided with care resipients more often than carers in Austria or Finland.ConclusionSmall differences between the risk-adjusted SCRQoL scores between Austria, England and Finland are consistent with the observation that the countries provide different types of support for informal carers. Our results help local and national decision-makers in these countries to benchmark their informal care support systems.

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

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

Physical pain among family caregivers to older adults: A scoping review of the literature.

Scholarship on the health of family caregivers to older adults continues to expand. Although existing research suggests that many family caregivers experience pain, which impacts their ability to perform caregiving tasks and is associated with care recipients' unmet needs, the scope of research on family caregivers' pain remains poorly characterized. We conducted a scoping review of research on pain among family caregivers to older adults to characterize existing evidence and identify knowledge gaps. We searched multiple databases spanning from January 2012 to July 2023, identified eligible studies using predefined inclusion/exclusion criteria, and extracted key data (e.g., study design/methodology, pain measurement, caregiver pain type, and major findings). We identified 46 eligible studies conducted in the United States (n = 19) and internationally (n = 27). Studies often focused on caregivers for older adults with specific health conditions, such as cancer (n = 11), dementia (n = 8), or stroke (n = 3). The most commonly employed pain measure was a single-item dichotomous question about pain (n = 16), followed by a visual numeric or visual analog scale (n = 11). Nine studies (five randomized controlled trials) reported on five caregiver pain management interventions, including yoga/exercise programs and caregiver education programs. Existing research on family caregivers' pain offers an important foundation. However, more robust research designs are necessary. We identify possibilities for future studies in addition to opportunities for systematic investigations to support the family caregivers being relied upon to care for the increasing number of older adults.

Care Need, Caregiver Availability, and Care Receipt: Variations Across Countries and Over Time in Three Middle-Income Countries.

Dementia is expected to increase more rapidly in low- and middle-income countries (LMIC) than in high-income countries (HIC) in the coming decades. Nevertheless, research on dementia care remains limited for LMIC. This study aims to fill this gap by investigating care needs and care receipt in three LMIC: China, Mexico, and India. Using harmonized data from the Gateway to Global Aging Data in China, Mexico, and India and focusing on individuals aged 65 and older with cognitive impairment (N = 15,118), we estimated the proportions of care needs related to difficulties with activities of daily living (ADL) and instrumental activities of daily living (IADL), and care receipt. We then used logistic regressions to examine the association between caregiver availability and informal care receipt. We observed relatively similar patterns in care need measures across countries and over time. In contrast, the association between caregiver availability and informal care receipt showed some cross-country variations. Generally, living with family members was associated with a higher probability of receiving informal care in China and India. However, for Mexico, this association was only evident for men. Additionally, we found that the magnitude of the association between caregiver availability and informal care receipt varied with the care recipient's gender. While living with family members was generally associated with a higher likelihood of receiving informal care in China, Mexico, and India, there are differences in the association between caregiver availability and informal care receipt across countries and over time.

Supporting Individuals With an Acquired Brain Injury: An Interpretative Phenomenological Study Exploring the Everyday Lives of Caregivers.

Acquired brain injury (ABI) is one of the most common causes of disability and death globally. Support from informal caregivers is critical to the well-being and quality of life of people with ABI and supports the sustainability of global health and social care systems. This study presents an in-depth qualitative analysis of the experiences of eight British informal caregivers supporting someone with ABI. Semi-structured interviews were conducted with narratives transcribed verbatim and analysed using interpretative phenomenological analysis (IPA). Three superordinate themes were generated: making sense of brain injury; being consumed by caregiving; and, the changing self. These data highlight the impact of caregiving on the caregiver's illness perceptions and sense of self. By identifying negative and positive changes in the caregiver's sense of self, and dilemmas regarding the care recipient's behaviour, we address less understood aspects of caregiver experiences. Caregiving can pose both challenges to the caregiver's sense of identity and an opportunity for self-growth. Some caregivers exhibit resilience throughout their journey, with post-traumatic growth more apparent in the later stages of caregiving. Illness perceptions shape caregiver well-being and family dynamics and indicate the need to address stigmatisation and discrimination faced by ABI survivors and caregivers. Although some caregivers acquired positive meaning and enrichment from their caregiving, previously described challenges of ABI caregiving are supported. Overall, our findings support the need for timely psychological/mental health support for caregivers, caregiver education, and the provision of short breaks from caregiving.

PCR249 Understanding Caregiver Burden from Multiple Perspectives: Dyadic Agreement between Caregiver and Care Recipient

PCR249 Understanding Caregiver Burden from Multiple Perspectives: Dyadic Agreement between Caregiver and Care Recipient