Abstract
The growing number of older adults who opt to receive home-based long-term care frequently rely on home care workers including home health aides, personal care aides, and other paid caregivers or direct care workers to remain living in their homes. Currently, over 2.6 million home care workers provide hands-on care in the home; it is estimated that a million new home care jobs will be added by 2030 (PHI 2021). The COVID-19 pandemic has only made clearer that home care workers provide essential support and are the backbone of the long-term care system, which is increasingly shifting from institutional to home settings.
Despite this, home care workers are understudied. In particular, little is known about how care from home care workers supports older adults and their families. Study of home care workers in the United States is made more challenging by the lack of a cohesive system of home-based long-term care. Instead, home care is funded by a patchwork of payers (e.g., self-pay, private long-term care insurance, Medicaid) and home care worker training, supervision, and scope of practice can vary widely depending on location and payment source. Furthermore, the skills required to provide home care may differ depending on the type and degree of care recipient needs, which makes generalizations about the home care worker role challenging.
This variability in home care makes it even more important to conduct research that examines home care workers not only as an abstract workforce, but also studies home care in relation to the nuanced context in which care is delivered. When examining home care workers themselves, this means thinking about how structural factors, the home as a workplace, and type of care delivered impact the experience of those working low-wage home care jobs. When examining older adults who receive care, this means thinking about home care in the context of family care, medical care, and other long-term services and supports that all work simultaneously to support the health and well-being of older adults living at home.
Such research requires methodologic creativity. Few existing data sources provide detailed descriptions of home care worker tasks or evaluate what contributes to quality home care across care recipients or payers. Meaningful information connecting home care to outcomes for care recipients and families is even rarer. Fortunately, recent recognition of the essential role of home care workers for those with functional impairment has sparked support for expanding research about home care and home care workers. For example, the National Institute on Aging recently funded the AWARD (Advancing Workforce Analysis and Research for Dementia) Network to advance research about the direct care workforce serving people with dementia.
In this special issue, we present a tremendous range of scholarship that uses diverse methodologies to deepen our understanding of both the experience of providing home care and how this care matters for older adults and their families. The first set of papers highlight how structural factors including state policies and care models impact home care delivery. For example, Jutkowitz et al. present findings from the Health and Retirement Study that examine how increases in state minimum wage are related to hours of family/friend or paid caregiving. Next, Wendel et al. examine the impact of COVID-19 on self-directed home and community based services (HCBS) in Kansas, highlighting how self-directed HCBS consumers carry much responsibility as employers and calling attention to the under-resourced working conditions and labor shortages exacerbated by the pandemic. MacLeod examines the benefits and challenges associated with independent contracting arrangements between families and home care workers, and Welleford et al. call attention to how partnerships between public and private entities at the county level help to recruit and train home care workers. Finally, Franzosa et al. present findings examining coordination of medical care and home-based long-term care and highlight the structural barriers to communication and the importance of communication to improve work quality and care for older adults.
The second set of papers highlight the care experiences of older adults who receive care from home care workers. Xu and colleagues analyzed narrative chart notes from homebound older adults during the COVID-19 pandemic and found that disruptions in home care negatively impacted care recipients, who relied on home care workers for a wide variety of care tasks. Brouillette et al. describe how attention to both home care workers and care recipient safety may improve home care worker retention and Lam and Baxter illustrate how home care workers perform “social labor” that supports the social needs of those they care for. Odle-James and Willie-Tyndall evaluate an elder care companion program in Barbados and describe how the program benefits both home care workers and care recipients. May and Rainbow conducted interviews with direct care workers in multiple long-term care settings to explore their perceptions about caring for lesbian, gay, bisexual, transgender (LGBT) older adults.
The papers in the third section focus on the role of home care workers in caring for older adults with specific health conditions. Reckrey et al. conducted semi-structured interviews with family caregivers of people with advanced dementia, highlighting how stable care from a home care worker who was a “good fit” improved outcomes for people with dementia and their family caregivers. Yeh and colleagues present preliminary results from California’s In-Home Supportive Services—Alzheimer’s Disease and Related Dementias Training Project, which demonstrate increased dementia knowledge and self-efficacy at training completion for participating home care workers. Fabius et al. discuss similar supports at the agency-level in Maryland HCBS, concluding that few agencies require dementia specific home care worker training, and older adults receiving care from agencies that require training more often report negative care experiences. Savundranayagam et al. describe language-based strategies that support person-centered care for older adults living with dementia. Stawnychy et al. find that home care workers who report self-efficacy in their care of people with heart failure were more likely to have heart failure-specific training and report greater job satisfaction.
The fourth set of papers in this special issue highlight the health and well-being of home care workers. Russell and colleagues present findings from a qualitative study examining home care worker perspectives on COVID-19 vaccinations, concluding that provision of tailored information with support to address vaccination barriers may increase vaccine uptake. Zagrodney et al. examine direct care worker characteristics across hospital, nursing home, and home and community sectors in Canada and describe how those in the home care setting are uniquely vulnerable. Janssen and Abbott present results from a qualitative study demonstrating that facilitators of emotional health among home care workers include having a positive outlook, practicing self-care, and having a combined sense of appreciation and support. Finally, Gebhard and Hertz conduct a systemic review to examine interventions addressing direct care workers’ health and find that the predominant methods of intervention included organizational, training/educational, and behavioral, with several studies utilizing combined methods.
The fifth set of papers in this special issue amplifies issues related to home care worker job quality including work-related burden and stress. Gebhard and Wimmer completed a qualitative analysis of audio diaries of direct care workers and learned that work-related burdens were predominately related to work organization and being assigned extra tasks. In an analysis of the Korean-based 2019 Long-Term Care Survey, Lee et al. find that working conditions (e.g., occupational hazards) influenced direct care worker stress. Further, Gleason et al. present how positive job characteristics, including having control over client selection, location, schedule, and job tasks, improve job quality. Tangchitnusorn et al. share an analysis that highlights the need for support and training to support job quality of home care workers in Thailand. Shalev and colleagues conducted a cross sectional study of home care workers caring for adults with heart failure and found that higher mutuality (quality of worker-client relationship) was associated with increased job satisfaction. Zagrodney et al. highlight how factors including lower wages make home care jobs less desirable as compared to other direct care jobs and Kallas et al. highlight challenges often experienced by home care workers in rural communities. Finally, Bandini et al. describe opportunities for technology to improve communication within home care.
Taken together, the papers included in this special issue lay the foundation for future research and evidence-based policies that provide better support to home care workers, home care providers, and older adults who receive home care. They also highlight the fact that in order to continue to provide this care, home care workers themselves need the support of the larger community of families, researchers, and policy makers focused on improving care for older adults. We encourage Journal of Applied Gerontology readers to partner with advocates for the home care workforce; supporting the workforce is a way to not only support home care workers themselves, but also to support the older adults who rely on their care. Now is the time for innovative, nuanced research to better understand the essential role home care workers play in the care of older adults.