Home Care Policy Research Articles

Inequalities in Transitions to Home Care: A Longitudinal Analysis of the Canadian Longitudinal Study on Aging

ObjectivesTo investigate inequalities in transitions to home care across a broad set of demographic and socioeconomic factors in Canadian middle-aged and older adults. DesignLongitudinal, retrospective cohort study. Setting and ParticipantsA total of 51,338 community-dwelling adults aged 45+ years, using national data from the Canadian Longitudinal Study on Aging across 3 timepoints from 2011 to 2021. MethodsWe analyzed transitions in home care use using multistate Markov models, with home care use and nonuse as transient states, and loss to follow-up as a terminal state. We calculated hazard ratios for transitions between states adjusting for factors related to home care need (ie, functional limitations, chronic conditions) within the following equity strata: income, education, immigration history, sex, gender, rurality, racial background, and tangible social support. ResultsAcross all timepoints, 5.4% of non–home care users transitioned to home care by the next timepoint and 33.2% of home care users continued to use home care at the next timepoint. Among non–home care users, identifying as a woman, female, White, completing higher levels of education, having higher income, and having less support available was associated with an increased likelihood of transitioning to home care use. Among home care users, higher income was also associated with a greater likelihood to discontinue using home care compared with lower income users. The association between income and home care use was stronger among female individuals. Conclusions and ImplicationsWe found meaningful differences in home care transitions across several equity strata. Individuals with higher income have greater ability to access to private care, creating inequity in access to home care services. Gendered factors such as income and social support have important associations with home care use. Home care planning and policy must address the unique barriers and disadvantages diverse populations face to ensure equitable use of home care and promote healthy aging.

SAFE – A risk management tool to protect both people and pets in residential aged care facilities

Abstract Pet ownership has known health and well-being benefits for people of all ages. Most previous research on pet ownership among older people has focussed on older people with pets living independently in their own homes or the effects of visiting pet programs in residential aged care. With structural ageing of populations globally, the number of humans living into old age is increasing. Even with home support and care policies, an increasing number will need to live in communal aged care settings. Currently, pets rarely accompany older persons into communal residential aged care. This article presents a risk management tool – Safe Animal Friendly Environments (SAFE) – designed to facilitate and maintain private pet ownership among older people living in residential aged care facilities. SAFE was developed to identify best practice for both human and animal well-being in residential aged care. The tool supports both human and animal well-being during a human stage of life with many losses and pains while reducing the number of pet animals needlessly relinquished or even euthanised when owners need to ‘go into care’. It was developed using a Delphi process with multidisciplinary expert input. We identify the different types of risks for stakeholders (residents with pets, aged care facility staff and pets), including physical, zoonotic and psychological risks. None of the identified risks of pets in aged care are unmanageable. SAFE reduces risks to acceptable levels and directs how to remove them where possible. SAFE has a summative table listing 17 general risks: from animals to humans, humans to animals and animals to animals. Each identified risk has a pre-mitigation risk assessment (low, medium or high), recommended mitigation actions and a post-mitigation risk rating (low, medium or high). Post-mitigation risk is reduced to ‘low’ in almost all scenarios. SAFE has separate tables for dogs, cats, small mammals, birds and fish, each preceded by a best practice case study. The discussion links the Ottawa Charter for (human) health promotion and use of SAFE. SAFE contributes to the inclusion of residential aged care as a context for the personal human-animal bond.

National Intentions and Local Welfare Markets: A Comparative Analysis of Market Tools to Support Older Adults in France and Québec

This homecare policy study compares the creation and enactment of a managed market (Quebec) and a consumer-driven market (France) in urban and rural areas. Market tools are ill-suited for rural environments, as policymakers have an urban setting in mind. Consequently, market tool preferences have modest relevance in rural settings, with implementers facing multiple hurdles to develop and sustain markets. This comparative study demonstrates that the deployment of market tools actually results in heightened pressures on not-for-profit organizations to fill a growing number of service gaps and to adapt market instruments and mechanisms.

A deep dive into the 8 caring technology principles and their contribution to integrated primary care.

Introduction: The eight Caring Technology Principles (8CTP) provide guidance and a call to action for tech developers, health and care organizations and professionals, policy makers and citizens to develop and implement humane technology and citizen-centred data management.
 What are the challenges? Technology has become indispensable in health care. Data on our health, well-being and lifestyle are widely captured and commercialized, often without our knowledge or true consent. Data are indeed becoming the new currency, and access to real life data can be a game changer to address challenges in health care and beyond. Yet, how can we guarantee that use of personal data and technological innovations add value to society? How can we ensure that citizens have full control over their data?
 With these questions in mind, the King Baudouin Foundation, a Brussels-based philanthropic organization serving the general interest, gathered a diverse group of 30 stakeholders who jointly developed a framework with 8 CTP through a method of future exploration. The 8 CTP guide the development and use of technological innovations aimed at improving people’s health, well-being and quality of life.
 They represent humane technology and citizen-centred data management, anchored in society, through a participative and adaptive governance, guaranteeing quality and systemic coherence. The aim is to widely disseminate, adopt and implement the 8 CTPs through a learning community that gradually evolves to an international learning ecosystem.
 
 Six diverse initiatives, representing 2 home care organizations, a European patient organization, a consultancy company, a living lab, a university college, a university and a research organization develop and test practical tools in a learning community. Together they make the 8 CTP more concrete and working.
 Aim and target group: We will assess the added value of the 8 CTP framework for different stakeholders in integrated primary care in a (inter)national context.
 Value for participants: Participants will understand the value of the 8 CTP from the perspective of the different stakeholders in the context of integrated primary care. Participants will experience the usefulness of the 8 CTP framework in their own context. They can join the learning community and access all relevant materials.
 Structure of the workshop:
 10 mins – Welcome and introduction to the 8 CTPs (King Boudauin Foundation)
 30 mins – Interactive panel discussion: ‘From smart to caring technology’. Why do the 8 CTP matter to tech developers, home care organisations, patient organisations, ethicists and policy advisors
 15 mins- Small group exercise: ‘What can the 8 CTP framework offer to you?’
 5 mins – Take home messages: each participant defines a take home message. Participants are invited to subscribe to the 8 CTP

An IT-supported multidimensional approach for frailty screening in community-dwelling older adults

Introduction: Frailty in older adults is characterised by a dynamic state of vulnerability with weakness and reduced physiological reserve leading to an increased risk of worsening in quality of life, falls, institutionalisation, disability and death [1]. The COVID-19 pandemic is an example of how an infectious hit can determine an increased mortality especially among older and vulnerable population subgroups [2], as well as a deterioration in their quality of life due to loneliness and limited access to health and social services. Frailty syndrome is a complex interplay between several factors, including, but not limited to, natural physiological changes in ageing, multi-morbidities, malnutrition, living environment, genetics and lifestyle [3]. Early screening for frailty risk factors in the community-dwelling older adult population allows preventive interventions on the clinical and social determinants of frailty, avoiding adverse events and contributing to improve the resilience of health care systems.
 Method: Programma Mattone Internazionale Salute (ProMIS), the Italian Ministry of Health's programme for innovation of regional health systems [4], built up a working group (WG) on Frailty, including doctors, nurses, home care professionals, physiotherapists, pharmacists, psychologists, dieticians, social workers, physical trainers and policy makers, to develop a proactive and integrated approach to detect frailty and its risk factors in community-dwelling older adult population.
 Results: The participatory activity of ProMIS’ WG led to the identification of an integrated approach aimed to connect the SUNFRAIL tool for the early identification of frailty in the over-65 population [5] to other in-depth scales for the assessment of specific dimensions of frailty, guiding subsequent diagnostic assessments for health promotion, disease prevention and intervention. An IT tool was developed for data collection, SUNFRAIL+, which includes, in addition to SUNFRAIL tools, the validated scales for screening the nine domains of frailty, which automatically generates alerts, thanks to which targeted interventions will be activated in the compromised domains. A national multi-centre observational study protocol has been designed to validate the approach by assessing the impact of early, integrated, and multi-professional care on the quality of life of the community-dwelling older adult population and the professional’s satisfaction.
 Conclusion and discussion: The study design builds on the tool developed by the SUNFRAIL EU project [6], and provides the background for bridging multidimensional interventions to prevent frailty and mitigate its consequences on quality of life and functional ability in community-dwelling older adults, exploiting available services in the different health care services. The study will also provide the information needed to design a logical model integrating coherent interventions in the framework of specific frailty domains.

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.

High Hospital-related Costs at the End-of-life in Patients With Multiple Myeloma: A Single-center Study.

High Hospital-related Costs at the End-of-life in Patients With Multiple Myeloma: A Single-center Study.

What constitutes \u2018good\u2019 home care for people with dementia? An investigation of the views of home care service recipients and providers

BackgroundOur objective was to explore what people receiving and providing care consider to be ‘good’ in-home care for people living with dementia.MethodsWe conducted 36 in-depth interviews and two focus groups with key stakeholders in Australia in the first quarter of 2018. Participants included those receiving care (4 people living with dementia, 15 family carers) or providing care (9 case managers, 5 service managers, 10 home care workers). Qualitative thematic analysis was guided by Braun and Clarke’s six-step approach.ResultsConsensus was reached across all groups on five themes considered as important for good in-home dementia care: 1) Home care workers’ understanding of dementia and its impact; 2) Home care workers’ demonstrating person-centred care and empathy in their care relationship with their client; 3) Good relationships and communication between care worker, person with dementia and family carers; 4) Home care workers’ knowing positive practical strategies for changed behaviours; 5) Effective workplace policies and workforce culture. The results contributed to the co-design of a dementia specific training program for home care workers.ConclusionsIt is crucial to consider the views and opinions of each stakeholder group involved in providing/receiving dementia care from home care workers, to inform workforce training, education program design and service design. Results can be used to inform and empower home care providers, policy, and related decision makers to guide the delivery of improved home care services.Trial registrationACTRN 12619000251123.

More than chores: The invisible health work of family caregivers in rural New Brunswick, Canada.

Most home care for people living with chronic illness or disability is provided by informal, or unpaid, family members. Family caregivers in rural New Brunswick engage in essential work to maintain the home as a site of care. Renovations, property maintenance, and the administrative work involved in accessing medical equipment and managing staff are examples of the types of invisible labour involved in interacting with a complex care environment. Conversations with 13 family caregivers across a small rural Canadian province suggest that even when resources are 'available', place-based factors involved in caring at home in a rural setting make it difficult for carers to use these resources and accessing them becomes another form of work itself. Similar to Wiles et al.'s (2018) findings in their study of end-of-life family care in Aotearoa, New Zealand, carers in rural New Brunswick spoke of their activities as part of an ongoing process of interaction with the care recipient and care environment. Carers with fewer financial and material resources experienced higher burdens of invisible work. The paper sheds light on the types of labour involved in 'knowing, doing, and negotiating' care at home and re-categorizes these activities as 'health work' as a means of informing home care policy. The paper finds that family caregivers are aware of their invisible work, characterize it as essential health work, and seek recognition for their complex contribution to the formal health system.

Home Care Services for Seniors: A Typology of Instruments and Administrative Burdens in Industrialized Countries

This contribution has two key objectives. First, inspired by earlier studies in comparative welfare state and in (social) gerontology, we develop a conceptualization of autonomy that is rooted in its social dimensions. This concept is then deployed to assess its policy considerations within the field of home care, both with regards to access and generosity in 21 industrialized countries. Second, this contribution performs a comparative assessment of the key factors resulting in a prioritization of the social dimensions of home care and social services in long term care. This study involves an-depth analysis of policy instruments deployed by public authorities to enhance the (social) autonomy of older adults, complemented with interviews with policy makers in diverse home care policy settings (Canada, France, South Korea, Sweden, and the United States). As such, this study features an evaluation of the presence of social elements in the definition and supply of care needs across 21 countries. It leads to the construct of a social dimensions of autonomy index based upon these instruments and the budgetary prioritization of home care within long term care policies. Among core findings, one discovers broader access and more generous funding when home care responsibilities are firmly embedded at the local level.

A Home-Care Service for Frail Older Adults: Findings from a Quasi-Experiment in Milan

Population aging is particularly pronounced in Italy. Recently, home-care services emerged as one of the desirable strategy when dealing with such situations of fragility. In this framework, we present the evaluation of a home-care service which was experimentally implemented by Fondazione Sacra Famiglia and Casa di Cura Ambrosiana in the 2017–2018 biennium. The service consisted of a twice-weekly nursing visit intended to monitor patient health conditions and to gather data constantly supervised by a geriatrician. The eligible population consisted of the users of San Carlo Hospital Emergency Department (91 individuals). Twenty of these individuals had access to the experimental home-care service. The results show the smaller probability of mortality for the treatment group compared to the control group, but similar probabilities in admissions to ER and in hospitalizations. These findings suggest that health home-care policies could reduce mortality by lessening the negative effects of relational isolation.

Substitutes or complements between informal and formal home care in the Canadian longitudinal study on aging: Functional impairment as an effect modifier

In Canada and around the world, policy makers are struggling with funding between informal care and formal home care. Understanding the relationship between the two types of care is helpful to inform funding allocations. In this study, we examined the relationship between informal care and formal home care and assessed whether this relationship varies across levels of functional impairment using the Canadian Longitudinal Survey of Aging (CLSA). Our study population was baseline CLSA participants between 2011 and 2015 who were functionally impaired. We used self-reported measures of total hours of informal and formal home care received over 12 months and evaluated their relationship using a two-part model and an instrumental variable method. Our results emphasized the importance of accounting for the potential endogeneity of informal care. We consistently found that there was a negative relationship between informal care hours and the probability of receiving formal home care among middle-aged and older adults and a negative coefficient of the interaction term between informal care hours and functional impairment level. The results suggest that there is a substitution relationship between informal care and formal home care and that this substitution relationship is stronger for highly impaired middle-aged and older individuals. Our findings will help policy makers understand the complexity of the relationship between informal and formal home care and implement policies accordingly.

Policy and Practice Note: Policy, Safety, and Regulation with Regard to Ontario Home Care Clients and Personal Support Workers.

In light of COVID-19 and elevated concerns for the health of older Canadians receiving care, this Policy and Practice Note explores the confluence of the current home care policy landscape and the organisation of personal support worker (PSW) work, and highlights the need to consider governance of PSW work generally, and in-home and community care especially. PSWs are currently not professionally regulated, nor is there a central site documenting location, education, or any form of verification of the PSW workforce. Home care PSWs often provide physical care in isolated settings with no in-person supervision. In home and community health care, complaints about PSWs can be scattered among different service providers or client files not linked to or searchable by PSW name. This policy note explores how these factors and the currently unregulated status of PSWs affect home care safety in general as well as in the context of COVID-19, Ontario's decentralised home care system, and efforts towards professional regulation.

Interventions to Reduce the Impact of Client Death on Home Care Aides: Employers' Perspectives.

For home care agencies and aides, the death of clients has important, yet often unrecognized, workforce implications. While research demonstrates that client death can cause grief and job insecurity for aides, we currently lack home care agencies' perspectives on this issue and approaches to addressing it. This study uses key informant interviews with leaders from a diverse sample of eight New York City home care agencies to explore facilitators and barriers to agency action. We found that agencies engaged primarily in a range of informal, reactive practices related to client death, and relatively few targeted and proactive efforts to support aides around client death. While leaders generally acknowledged a need for greater aide support, they pointed to a lack of sustainable home care financing and policy resources to fund this. We recommend increased funding to support wages, paid time off, and supportive services, and discuss implications for future research.

PMU45 Growing Demand of HOME-Based Care: Review of Regulation, Financing, Delivery and Availability in Europe and Latin America

Growing demand of care for chronic and/or elderly patients has resulted in a need to expand formal care services for the health systems. In consequence, some countries are making efforts to stimulate community living and care, which includes home-based care (HBC). Our purpose was to describe the regulation of home care services in Europe (Austria, Belgium, Czech Republic, France, Germany, Italy, Poland, Russia, Spain, The Netherlands and United Kingdom) and Latin America (Argentina, Brazil, Colombia and Mexico), including legislative or guidelines-bases framework and national standards. A search on grey literature was performed. Search terms (in English and Spanish) including “home care services”, “medicine home delivery” and “drug distribution” associated with specific terms related to regulation and specific country name were run. All European countries except Russia offer total or partial coverage for home services. Only Belgium, France, Italy and Spain contemplate full financing of home care services, which are provided by their National Health Systems and are not subject to any patients’ cost-sharing. Most home healthcare programs explicitly include nurse services (Austria, Belgium, Czech Republic, Germany, Italy and The Netherlands). With regards to regulation of distant selling or delivery of medicines, most countries (n=9; 81.8%) only allow online sale of over-the-counter medicines. Only in The Netherlands, general practitioners can prescribe drugs online in certain circumstances, (i.e. in an emergency). All Latin American countries have rehabilitation and long-term care programs which are financed by their health systems. However, the level of coverage is very low. The regulation of distant selling or delivery of medicines is quite heterogeneous. The scarcity of up-to-date information on home care policy contrasts with its importance. There is great variation between countries in regulation, financing, delivery and availability. In addition, in several countries home-care policy is not well articulated and does not meet the demand for HBC.

What older adults and their caregivers need for making better health-related decisions at home: a participatory mixed methods protocol

IntroductionShared decision making is an interpersonal process whereby healthcare providers collaborate with and support patients in decision-making. Older adults receiving home care need support with decision-making. We will explore what...

Home care clients: a research protocol for studying their pathways

BackgroundEnhancing non-clinical home care supports and services for older adults to live well is a strategic priority in developed countries, including Canada. Underpinning these supports and services are structures of care that are reflected in home care policies, programs and practices within jurisdictions. These approaches to care exist at multiple levels and inform interactions, perceptions, and care assessment, planning and provision, ultimately shaping the supports that are delivered. Jurisdictional differences in approaches to care mean that pathways through home care systems may differ, depending on where one lives. The goal of this study is to understand how approaches to care shape the pathways of older adult home care clients with chronic and long term conditions in two Canadian health jurisdictions.MethodsThis longitudinal mixed-methods study has three interrelated research streams informed by aspects of the socio-ecological framework. We will examine client pathways using a retrospective analysis of home care assessment data (Resident Assessment Instrument- Home Care) in two health authorities (Client/Service Data Stream). We will analyze interview data from older adult home care clients and a cluster of each client’s family or friend caregiver(s), home support worker(s), care/case coordinator(s) and potentially other professionals at up to three points over 18 months using a prospective qualitative comparative case study design (Constellation Data Stream). We will review home care policies relevant to both health authorities and interview key informants regarding the creation and implementation of policies (Policy Stream). Our study will apply an integrated knowledge translation (iKT) approach that engages knowledge users in research design, analysis and interpretation to facilitate relevancy of results.DiscussionApplying a mixed-method research design to understand approaches to care within and between two jurisdictions will contribute to the evidence base on older adult home care client pathways. Study results will identify how potential differences are experienced by clients and their families. An understanding of the policies will help to contextualize these findings. The iKT model will ensure that findings are useful for strategic planning and decision-making, and supporting changes in care practice.

Fortunate and fearful: emotions evoked by home-care policies for older people in Ireland

This article examines the emotions of fear and feeling fortunate experienced by key actors in home-care services in Ireland. We take a relational approach to emotions; that is to say, an understanding that emotions are produced in social interactions and play an essential part in how people engage with, and respond to, long-term care policies. The study involved focus groups and in-depth interviews with 104 participants. Our findings show that the most vulnerable participants – service users and care workers on precarious contracts – feel fortunate or fearful about outcomes that had, or would have, a direct impact on them: respectively, having a good carer and obtaining job satisfaction, or losing a home-care package and not having enough work. Professionals were more likely to speak about luck and fear, not in relation to what could happen to them directly but in relation to the fate of service users and care workers. The unregulated home-care services in Ireland have influenced actors to construe their own and others’ participation in the system as increasingly individualised, where desired outcomes depend on one’s good luck or strong personal relationships. For the system to work properly trust needs to be present not only at the micro level of individual relationships but also at a system level. This could lead to a decline in emotions that centre on feeling fortunate and fearful, and an increase in expressions of trust and a sense of control by both care providers and care recipients.

A Practical Methodology for Improving the Aging-Friendliness of Communities: Case Studies from Three U.S. Communities.

Background and ObjectivesIn this paper, we present a series of three case studies to illustrate an innovative and practical approach to improving the aging-friendliness of communities. These three communities used the AdvantAge Initiative to “listen” to the voices of older adults in their communities and to identify and prioritize aging-related issues. This approach was developed by the Center for Home Care Policy and Research at the Visiting Nurse Service of New York (VNSNY), the largest not-for-profit home health care organization in the United States, and has been implemented in over 60 communities throughout the United States. The methodology involves tools such as conceptual frameworks, survey questionnaires, focus groups, and technical assistance to help stakeholders interpret data and find solutions to identified issues.Research Design and MethodsWe interviewed VNSNY program staff and community partners involved in three AdvantAge Initiative projects that commenced at varying time points: Memphis and Shelby County, Tennessee (2012); New York City’s Chinatown neighborhood (2006); and the state of Indiana (2008). We also collected and reviewed secondary materials associated with these projects (e.g., meeting notes from community planning meetings, annual reports from grant recipients, press coverage).ResultsIn this case study, we begin by providing an overview of the AdvantAge Initiative framework and the AdvantAge Initiative key indicators. We then present a more in-depth look at the three communities and how they approached and implemented the AdvantAge Initiative.Discussion and ImplicationsThese case studies demonstrate that this methodology may be implemented in diverse communities and geographic locations. By looking at the longer-term outcomes and by comparing the strategies employed by each community, we see that communities, regardless of size, can bring stakeholders together to promote health and implement meaningful changes that make the community a better place to live for older adults and their families.

HOME CARE IN THE REPUBLIC OF MOLDOVA: THE CHALLENGES FOR HEALTH AND SOCIAL POLICIES

Home care responds to people's health and social needs by offering quality services where the recipient lives. Demand for these services is steadily increasing, especially due to the aging population. The purpuse of this study is to analyze the situation in the field of home care in the Republic of Moldova. The study is based on a methodological approach focused on the analysis of the normative framework, the opinions of the service providers (public and private), but also of the representatives of the local public authorities, including the beneficiaries. Quantitative and qualitative research methods have been used. Sociological survey based on a questionnaire was applied to 84 home care providers from 23 out of 35 Moldovan administrative territorial units. In-depth individual interviews were conducted with 2 categories of people: 20 home care beneficiaries and 24 mayors. The results of the assessment reveal shortcomings and achievements in the field of home care in the Republic of Moldova and gives recommendations for governmental and local authorities, public and private providers in order to develop home care services and policies in the field of home care, organization of advocacy activities.