Formal Home Care Research Articles

Can formal home and community-based care substitute informal care? Evidence from Chinese Longitudinal Healthy Longevity Survey

BackgroundFormal home and community-based care are often considered as the preferable option to institutional care, offering older individuals the convenience of receiving care in their homes. Although research has found that these services may alleviate the burden on informal caregivers, there is a lack of research on which specific types of formal home and community-based care influence informal care provision.MethodsEmploying fixed-effects and quantile regression models, this study seeks to explore the effects that various formal home and community-based care services have on reducing the burden of informal care. This study draws data from the Chinese Longitudinal Healthy Longevity Survey 2005, 2008, 2011, 2014, and 2018.ResultsOur findings indicate that two types of formal care substantially influence the provision of informal care. The availability of daily living assistance services correlates with reduced informal caregiving hours, especially for those with extensive care needs. The availability of community-based health care services is linked to a reduction in the direct expenses incurred from informal caregiving, especially for those incurring greater direct caregiving costs. These effects are more prominent among urban residents. Other services, such as mental health support and legal advice services, do not demonstrate significant effects on reducing informal care hours and costs.ConclusionsDaily living assistance and community-based health care services play a crucial role in benefiting informal caregivers. It is important to prioritize the expansion of these services, especially among those with greater care needs.

Equity in home care use in Canada: a cross-sectional analysis of the Canadian longitudinal study on ageing

BackgroundAlthough home care is an essential service that enables older adults to age at home, there are concerns that not all populations have equitable access to home care services in...

Patterns of Multidimensional Social Exclusion Among Older Home Care Services Recipients.

The guiding principle of current aging policies has been to promote older adults to live in their private homes, but little attention has been paid to social exclusion of older adults receiving home-based care. The aim of this study is to increase understanding on different patterns of multidimensional social exclusion among older adults receiving formal home care services, and through this to shed light on the possible challenges of current aging-in-place policies. The survey data were collected in 2022 among older adults aged 65 to 102 years receiving home care services in Finland and merged with administrative data (n = 733). A latent class analysis was used to identify different types of social exclusion. Multinomial logistic regression modeling examined factors associated with different social exclusion types. Four social exclusion types were identified: (1) not excluded (16.9%), (2) homebound economically excluded (40.1%), (3) excluded from social relations (28.6%), and (4) multidimensionally excluded (14.3%). Poor self-rated health and poor functional ability significantly increase the risk of being multidimensionally excluded or homebound economically excluded. The group using home care and medical services the most are the most multidimensionally excluded. The group living in urban areas are more likely to be excluded from social relations. Different types of social exclusion should be acknowledged when addressing social exclusion among home care clients. Enhanced measures should be developed to support older adults using home and healthcare services the most, as they are at high risk of severe exclusion.

Experiences with care coordination and backup plans in home and community based services during the COVID-19 pandemic in Kansas

BackgroundThe COVID-19 pandemic was an emergency event during which backup plans became widely relevant. Although backup plans are required for Medicaid-funded Home and Community Based Services (HCBS) as a key risk management strategy, we know little about their effectiveness. ObjectiveThe purpose of this study was to explore whether backup plans and care coordination met the needs of HCBS consumers during the COVID-19 pandemic in Kansas. MethodsAn interactive, convergent mixed-methods design within a community-based participatory research framework was used. Data came from 70 in-depth interviews with HCBS consumers, caregivers, workers, and providers, as well as 100 surveys from consumers, asking about experiences receiving or providing care during the COVID-19 pandemic in Kansas. Inductive coding was used to identify major themes for the qualitative data. Descriptive and bivariate analysis were used for quantitative data. ResultsOne-third of survey respondents reported not having a backup plan and 39% went without formal homecare services for at least 2 consecutive weeks. The pandemic exacerbated and exposed deficiencies in care coordination and backup plans in a managed care environment. Interview participants expressed great need for backup workers during the pandemic but struggled to find these supports. Although family, friends, and providers stepped in to help fill gaps, there remained many unmet care needs. ConclusionsFindings indicate that improvements are needed in care coordination to support the development and maintenance of backup plans that can be successfully drawn on to avoid interruptions to care.

Care model selection for older adult stroke survivors with disabilities: insights from the eighth wave of CLHLS data and influencing factors.

Analyzing the differences in caregiving models for disabled older adult individuals after stroke and the influencing factors, to provide a basis for addressing relevant social demographic issues. The older adult diagnosed with stroke were screened from the Chinese Geriatric Health Survey (CLHLS), and were further divided into subgroups of disability, which was based on their ability of or whether they need help in performing activities such as dressing, bathing, eating, toileting or bowel and bladder control using the international common Katz scale. The care model was divided into formal care, informal care and home care. Multivariate logistic regression was used to screen the influencing factors of the choice of care model for the disabled older adult after stroke. The results of univariate analysis showed that there were statistical differences in the choice of care mode among different ages, household registration types, number of children, years of education, degree of disability, community services, retirement pension, marital status and medical insurance. Multiple logistic regression showed that, The rural older adult with more children, shorter education years, living with spouse and no help from community tend to choose informal care. Older adult people with higher levels of education, urban household registration, and access to community services are more likely to choose formal care. Older adult women with multiple children are more likely to receive care from their children. In the future, vigorous support for the development of formal caregiving institutions and the improvement of the management system of formal caregiving will help enhance the subjective initiative of disabled older adult individuals in choosing caregiving models and alleviate the burden of family caregiving.

Applying a Human Rights-Based Approach to Formal Care and Support Provided in the Home: A Narrative Review

Providing formal care and support in the home has many benefits. Applying a human rights-based approach places the person and their human rights at the centre of all that a health and social care service does. There is a paucity of evidence on how to apply a human rights-based approach in practice when providing homecare. Increasing knowledge and understanding of human rights will empower health and social care practitioners to protect and promote human rights in formal homecare. The aim of this narrative review was to identify and describe human rights-based approaches in homecare, in order to promote awareness and understanding of a human rights-based approach. Five bibliographic databases were searched. Primary research studies pertaining to the delivery of formal homecare that included a human rights-based approach were eligible for inclusion. Sixteen articles were identified for inclusion. Quality appraisal and data extraction were conducted on included studies. A deductive framework analysis was used and concepts of a human rights-based approach that emerged from the literature as relevant to homecare were as follows: dignity and respect, autonomy, equality, participation, and communication. We found that homecare planning and delivery requires the integration of human rights, using approaches, such as person-centred care, partnerships in decision-making, supporting independence, and acknowledging a person’s beliefs and cultures, in everyday practice. Findings from this review can support and enable service providers to apply human rights in everyday practice, ultimately for the benefit of people using homecare services.

Development of the Community-based complex Interventions to sustain Independence in Older People (CII-OP) typology: a qualitative synthesis of interventions in randomised controlled trials.

Community-based services to sustain independence for older people have varying configurations. A typology of these interventions would improve service provision and research by providing conceptual clarity and enabling the identification of effective configurations. We aimed to produce such a typology. We developed our typology by qualitatively synthesising community-based complex interventions to sustain independence in older people, evaluated in randomised controlled trials (RCTs), in four stages: (i) systematically identifying relevant RCTs; (ii) extracting descriptions of interventions (including control) using the Template for Intervention Description and Replication; (iii) generating categories of key intervention features and (iv) grouping the interventions based on these categories. PROSPERO registration: CRD42019162195. Our search identified 129 RCTs involving 266 intervention arms. The Community-based complex Interventions to sustain Independence in Older People (CII-OP) typology comprises 14 action components and 5 tailoring components. Action components include procedures for treating patients or otherwise intended to directly improve their outcomes; regular examples include formal homecare; physical exercise; health education; activities of daily living training; providing aids and adaptations and nutritional support. Tailoring components involve a process that may result in care planning, with multiple action components being planned, recommended or prescribed. Multifactorial action from care planning was the most common tailoring component. It involves individualised, multidomain assessment and management, as in comprehensive geriatric assessment. Sixty-three different intervention types (combinations) were identified. Our typology provides an empirical basis for service planning and evidence synthesis. We recommend better reporting about organisational aspects of interventions and usual care.

Comparing the cross-national impact of the COVID-19 pandemic on care received by community-dwelling older adults in 2020 and 2021: restoring formal home care versus polarizing informal care?

The COVID-19 pandemic has changed the supply of formal and informal home care to older adults in many countries across the world. This study aims to compare the initial picture of how the supply of formal and informal home care to older adults in European countries and Israel changed during the first pandemic year (from mid-2020 to mid-2021) and to examine the changes that these countries made in the provision of adequate care to older adults. Using data from the two COVID-19 waves of SHARE, we show that the provision of formal home care services improved in the investigated period, as in 2021 the share of those who reported difficulties in receiving formal home care dropped significantly compared to the previous year. By contrast, informal care provision patterns experienced a growing polarization, with some countries continuing in reporting a strong support from this source, and others moving towards a remarkable reduction in the help coming from informal networks. These findings can serve as a basis for the development of evidence-based recommendations that can inform future care policies at the national level and to implement more sustainable models for older adults living in the community.

A novel application of a self-report comprehensive assessment: Where do telephone assessments fit in home care practice?

Introduction: In Canada, long-stay home care patients are a prevalent group of frail older adults living in the community. Home care patients have a high emergency department visit rate compared to those living independently without formal home care services. In March 2020, concerted efforts were put into place to reduce COVID-19 transmission and spread in health sectors, including older adult home care populations.
 Description: The interRAI home care (HC) assessment is the practice standard for face-to-face comprehensive assessments in home care. The interRAI Check Up is a comprehensive self-report assessment that can be completed in-person, by video call or telephone. Check Up assessment items are consistent with the content items of interRAI HC. During pandemic mandated restrictions, care coordinators used the Check Up to assess new and existing patients over the phone or by video call to ensure continuity of care. Feasibility and utility of the Check Up was evaluated through a staff survey and focus groups in two distinct regions of Ontario.
 Discussion: A total of 48 care coordinators completed the survey, of which 7 consented to provide feedback in the focus groups. Care coordinators found the Check Up easy to pivot to during the pandemic, citing familiarity with questions and risk algorithms. The Check Up results were helpful in gaining an understanding of the patient’s medical issues, functional status, mood, and informal supports, while telephone and video assessments saved travel time. According to the care coordinators, patients and informal care givers were comfortable answering the questions over the phone and appreciative of interaction with a health professional. Although care coordinators were accustomed to telephone check ins, language barriers, hearing impairment, and inability to see the home environment were limitations. Care coordinators found telephone assessments, using the Check Up, most beneficial in the absence of cognitive impairment and with patients previously known and assessed by the care coordinator. 
 Conclusion: The interRAI Check Up was an efficient method of completing a comprehensive assessment over the phone. Care coordinators found the Check Up to be best suited for reassessments and as a new assessment with stable, cognitively intact patients. Our findings support use of the interRAI Check Up as a promising and feasible addition to the suite of tools for home care coordination.

HOME CARE AND QUALITY OF LIFE AMONG COMMUNITY-DWELLING FRAIL OLDER ADULTS IN ISRAEL: A MULTIPLE MEDIATOR MODEL

Abstract The aim of the current study is to examine the association between two types of home care provision (combined formal and informal home care vs. family-only home care) and quality of life (QoL) of older adults, as well as the mediating effects of loneliness, social isolation and satisfaction with family relationships and support. A convenience sample of 360 Israeli adults aged 65+ responded to questionnaires. Using bootstrapping, we tested the strength and significance of the conditional indirect effects of the four simultaneous mediators. The results showed that combined formal and informal home care (vs. family-only home care) for older adults was associated with lower QoL of care-recipients, and was fully mediated by feelings of loneliness, social isolation, and low satisfaction with family support. Satisfaction with family relationships did not emerge as a mediator but was positively associated with QoL. Formal home care might reduce the QoL of care-recipients by increasing their feelings of loneliness, social isolation and reduced perceived family support. Practitioners should encourage family members to continue with family regular support and contact alongside the use of formal home care in order to maintain satisfaction and QoL of older relatives.

SUCCESSFUL METHODS FOR ELICITING VIEWS OF DIRECT CARE WORKERS REGARDING NEEDS AND PREFERENCES OF HOME CARE CLIENTS

Abstract Over the past decades, as the recruitment and retention of Direct Care Workers (DCWs) has become a critical issue, numerous studies have sought to elicit workers’ views, particularly on job satisfaction, stressors, and intent to stay. This project, which includes a review of those studies, uncovered a wide variety of methods and approaches, which we are evaluating for use in future studies that would capture direct care worker’s insights regarding the needs and preferences of the people for whom they provide support. In particular, this project, in conjunction with a larger one designed to assess dually-eligible care recipients’ experiences with formal home care, explores methodologies best suited to capturing the congruence of DCWs’ views with those of recipients’ needs and preferences. It would test the hypothesis that DCWs’ assessments may supplement recipients’ insights, and may strengthen advocacy to improve home care access, policies and practices. The presentation will offer a systematic review of methods and instruments, including use of validated tools and those with face validity that addresses culturally relevant factors, as well as the use of focused and hypothesis-generating open-ended interviews that are sensitive to the power relationships and voices of those participants in the endeavor. The presenters will offer potentially innovative practices, such as observation, documentation analysis, and the use of Delphi techniques which draw on the knowledge and expertise of DCWs. The presentation will also draw on studies that utilized technology and social media to reach and engage this study population.

RURAL DISPARITIES IN THE USE OF FAMILY AND FORMAL CAREGIVING FOR OLDER ADULTS WITH DISABILITIES

Abstract As federal and state policies rebalance long-term care from institutional settings to home- and community-based settings, reliance on formal (paid) and family (unpaid) caregivers for support at home nationally has increased in recent years. Yet, it’s unknown if use of formal and family care varies by rurality as a disproportional share of the aging population reside in rural areas. Using the Health and Retirement Study, we describe patterns in receipt of combinations of formal and family home care by rurality among community-dwelling adults aged 65+ with functional limitations from 2004-2016. Compared to older adults in urban areas, older adults in rural areas are more likely to receive any family care than those in urban areas and less likely to receive any formal care (2.4 and -4.4 percentage points respectively, p<0.05). From 2004 to 2016, a growing proportion of older adults in rural areas receive care from family caregivers exclusively while a decreasing proportion receive care from formal caregivers exclusively. When examining older adults in urban areas, we find the opposite trend — a growing proportion of urban adults rely exclusively on formal care and a decreasing proportion rely exclusively on family care. We find that national estimates of sources of caregiving and their trends mask significant heterogeneity in uptake by rurality. Understanding how older adults in rural areas are, or are not, receiving home-based care compared to their urban peers and how these patterns are changing over time is the first step to informing supports for family and formal caregivers.

DO PUBLIC HOME CARE CLIENTS “LOSE OUT ON SERVICES” BECAUSE THEY HAVE A FAMILY CAREGIVER?

Abstract The public home care (PHC) system in Canada is heavily reliant on family caregivers to enable clients to stay in the community. When caregivers are present, there are concerns formal home care aide (HCA) services are less available. Using data from the Resident Assessment Instrument for Home Care (RAI-HC), we examined caregiver and client characteristics in relation to HCA service amounts. Our cohorts were individuals aged 60+ receiving an initial RAI-HC assessment in 2011-2013, and one subsequent assessment in two provincial jurisdictions: the Winnipeg Regional Health Authority (n=5,251) and Nova Scotia Health (n=5291). We measured weekly HCA hours and constructed a predictive model for hours of care controlling for client need. To identify the most underserved client population, we calculated the ratio between predicted to actual received hours of care ascertaining the lowest client quintile. In both jurisdictions, the odds of being underserviced were higher when the client co-resided or had a spouse. Clients living alone at initial intake were least likely to be underserved. Caregiver characteristics increasing the risk of being underserved in Winnipeg included providing IADLs/ADLs support, caring more than 14 hours per week and being unable to continue. Rurality increased risk of underservice in Nova Scotia. These findings contribute to the debate: is PHC a supplement or substitution for family care? PHC as a supplement to family care was more pronounced in Winnipeg and in rural Nova Scotia. Implications for greater equity across regions is explored using an Equity, Diversity and Inclusion lens.

Greatest Risk Factor for Death from COVID-19: Older Age, Chronic Disease Burden, or Place of Residence? Descriptive Analysis of Population-Level Canadian Data.

During the first wave of COVID-19, three-quarters of Canadian deaths were among those age 80 and older. We examined whether age, chronic disease load, sex, or place was the strongest predictor of such deaths. A cross-sectional analysis of administrative data from 1 January 2020 to 30 October 2020 for the population of Ontario (n = 15,023,174) was performed. Using logistic regression analysis, we determined whether place of residence (community dwelling, community dwelling with formal home care, or long-term care facility), age group, sex, or chronic disease burden was most strongly associated with the outcome of death within 60 days of a positive SARS-CoV-2 PCR test. Overall, there were 2766 deaths attributed to COVID-19. The age-related odds of dying increased from 6.1 (age 65-74) to 13.4 (age 85 or older) relative to those aged <65 years. This age effect was dwarfed by an odds ratio of 117.1 for those living in long-term care versus independently in the community, adjusted for age, sex, and chronic disease burden. The risk of death from COVID-19 aligned much more with social realities than individual risks. The disproportionate mortality arising specifically from institutional residence demands action to identify sources and ameliorate the harms of living in such facilities.

Does informal care delay nursing home entry? Evidence from Dutch linked survey and administrative data

We assess whether informal care receipt affects the probability of transitioning to a nursing home. Available evidence derives from the US, where nursing home stays are often temporary. Exploiting linked survey and administrative data from the Netherlands, we use the gender mix of children to retrieve exogenous variation in informal care receipt. We find that informal care increases the chance of an admission within a three-year period for individuals with severe functional limitations, and increases the costs incurred on formal home care. For individuals with mild limitations, informal care substantially decreases total care costs, whereas its effect on nursing home admission is unclear. Further, informal care results in lower post-acute care use and hospital care costs, and does not increase mortality. Promoting informal care cannot be expected to systematically result in lower institutionalization rate and care costs, but it may nonetheless induce health benefits for its recipients.

Prevalence of Undernutrition in Community-Dwelling Older Adults in The Netherlands: Application of the SNAQ65+ Screening Tool and GLIM Consensus Criteria.

The aim of this study was to provide recent data on the prevalence of undernutrition based on screening and diagnosis in Dutch community-dwelling older adults. The data from the 2021 to 2022 examination wave from the Longitudinal Aging Study Amsterdam (n = 1138) and the Dutch National Food Consumption Survey 2019-2021 (n = 607) on community-dwelling men and women aged 65 years and older were used. The prevalence of undernutrition was based on a positive score on the Short Nutritional Assessment Questionnaire 65+ (SNAQ65+) screening tool, a positive diagnosis using the Global Leadership Initiative on Malnutrition (GLIM) criteria and their combination. Of the combined sample (n = 1745), the mean age was 74 (SD 6) years, where 16.7% were aged 80 years or older, 50.5% was female, 56.9% had a high education level, and 30.3% lived alone. The prevalence of undernutrition based on the SNAQ65+ screening in the combined sample was 8.5% (95% CI 7.3-9.9%). In the subgroup of LASA participants with complete data on all GLIM criteria (n = 700), the prevalence of undernutrition was 5.4% based on SNAQ65+ and 7.1% based on GLIM. A positive SNAQ65+ screening followed by a positive GLIM diagnosis resulted in a lower prevalence (3.1%). Being female, older, living alone, receiving formal home care, and having poor self-rated health, poor appetite, or mobility limitations, they were all associated with a higher prevalence, with more than two-fold higher prevalence rates in some subgroups. The results show that currently one out of twelve community-dwelling adults aged 65 years and older is undernourished based on the SNAQ65+ screening, and one out of fourteen is undernourished based on the GLIM diagnosis criteria. Awareness is needed to increase early recognition and treatment in community and primary care, especially among the more vulnerable groups.

Care recipients’ management of and approaches to receiving personal and intimate care

Summary An interview study was conducted with persons receiving home care services and personal assistance in Sweden (13 individuals, 25 interviews) with the aim to analyze their experiences of managing personal and intimate care. The analytical approach was guided by phenomenologically informed research and Erving Goffman's theoretical work on self-presentation and social life as it differs in frontstage and backstage settings. Findings A reflected approach to the complex challenges associated with becoming and being a person in need of personal and intimate care was revealed. This involved continuous adaptations and attuning to organizational and relational conditions of formal home care. Being a recipient of personal and intimate care does not mean being passive. It entails relating to and sustaining the care relation, where even choosing to accept suboptimal conditions is an act of agency. The recipients’ private homes were hybridized, transformed both into a waiting room, with the recipient on standby and into a workplace. The homes thus partly lost their character as a backstage realm where one could avoid the gaze of others. This also led to a hybridization of the personal sphere, in the form of marginal scope for true privacy, necessitating strategies for protecting one's own space. Applications It is important both to acknowledge the intrusive nature of personal and intimate care, which results in extensive hybridization of the home and personal sphere and to recognize care recipients’ agency in the relationship that care establishes.

Family Caregivers as Employers of Migrant Live-In Care Workers: Experiences and Policy Implications

ABSTRACT As policymakers globally recognize aging in place as the preferred option for most adults, there is a growing need to supplement family or informal caregiving for frail older adults with formal homecare services, particularly for those who require 24/7 care due to significant physical and/or cognitive impairment. The core objective of this qualitative study was to explore family members’ experiences in employing live-in care workers, particularly the nature of their engagement and the quality of their relationships with these care workers. Our analysis of semi-structured interviews with 35 family caregivers revealed four themes: 1) challenges in acquiring support and developing dependency; 2) negotiation of roles, responsibilities, and moral dilemmas; 3) shifting emotions between trust and suspicion; and 4) role confusion, expectations, and disappointments. The study suggests that families might benefit from formal guidance regarding fostering and maintaining positive relationships in the homecare environment. This paper provides nuanced knowledge that may inform the development of such interventions.

1598 A TYPOLOGY OF COMMUNITY-BASED COMPLEX INTERVENTIONS TO SUSTAIN INDEPENDENCE IN OLDER PEOPLE

Abstract Introduction Provision of community-based health services to support independence of older people, and further research in this area, would be improved by a typology of these complex interventions - thereby enabling evidence synthesis and the identification of effective intervention components. We aimed to produce such a typology in preparation for a systematic review and network meta-analysis. Methods The typology was developed based upon the descriptions of these interventions in published reports. This involved four stages: (1) systematic identification of relevant RCTs and related publications; (2) the extraction of descriptions of the interventions (including control/comparison) using the Template for Intervention Description and Replication (TIDieR); (3) a qualitative synthesis generating categories of key intervention features and (4) grouping the interventions based on the categories. Results Our search identified 496 reports of 129 studies, involving 266 intervention arms. 19 intervention components were identified: Formal homecare; Physical exercise; Health education; ADL training; Providing aids and adaptations; Nutritional support; Psychological therapy; Technology for communication and engagement; Cognitive training; Engagement in meaningful activities; Care voucher provision; Alternative medicine; Social skills training; Welfare rights advice; Medication review; Monitoring; Routine risk screening; Multifactorial-action from care planning; and Routine review following multifactorial-action from care planning. Multifactorial-action from care planning refers to a process of individualised, multidomain assessment and management resulting in a tailored selection of action components, as in comprehensive geriatric assessment. 63 different intervention types (combinations of these components) were identified. Conclusions The typology provides an empirical basis for service planning and evidence synthesis. Target populations are not explicitly integrated and should be considered separately. The components, being broad actions, are likely to endure; further components may be identified. However, the huge potential number of intervention types constitutes a challenge to typical approaches to effectiveness research. We recommend better reporting about organisational aspects of interventions and usual care.

The impact of long-term care insurance system on family care: Evidence from China.

The inconsistent findings on the impact of the long-term care insurance (LTCI) system on family care require us to extend our study horizon to more countries with LTCI system designs or market practices. China has explored the LTCI system through pilot programs, which provide a quasi-natural experimental environment. This paper aims to examine how the LTCI system affects family care in China. We primarily employ the time-varying difference-in-differences method to perform regression analyses based on the panel data from the China Health and Retirement Longitudinal Study. We discover a 7.2% rise in family care under the LTCI system. Specifically, the LTCI system is more likely to promote family care as the relatively primary care for disabled women, disabled people aged 60-74, and those who cannot fully take care of themselves. In addition, the formal care support policy of LTCI will crowd in both formal care and family care, and the crowding-in-effect on formal care may even obscure the crowding-in-effect on family care. The family care support policy of LTCI may encourage the policy-covered groups to take family care as their relatively primary care. It may also lengthen family care for those groups. The LTCI system has a crowding-in effect on family care. It can increase family care through cash payments or linking formal and informal care resources by providing formal community and home care.