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Death and dying are woven throughout the work of home care aides, and yet the care they provide at the end of life (EOL) remains poorly understood. This is due in part to the multiple circumstances under which aides provide EOL care. In this paper, we elucidate the EOL care experiences of aides working in home care agencies in New York City. We conducted in-depth interviews with 29 home care aides, and we analyzed these data using inductive, team-based methods. Our findings show that aides may not be aware of or accept a client's EOL status, and they may avoid EOL care. These conditions shape EOL care, and we detail the committed forms of care aides provide when they are aware and accepting. We recommend improved training, support systems, and policy change to enhance aides' contributions to EOL care, while protecting aides' health and well-being., Competing Interests: Declaration of Conflicting InterestsThe author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

Effective coordination between medical and long-term services is essential to high-quality primary care for older adults, but can be challenging. Our study assessed coordination and communication through semi-structured interviews with Veterans Health Administration (VHA) primary care clinicians ( n = 9); VHA-contracted home health agencies ( n = 6); and home health aides ( n = 8) caring for veterans at an urban VHA medical center. Participants reported (1) establishing home health services is complex, requiring collaboration between many individuals and systems; (2) communication between medical teams and agencies is often reactive; (3) formal communication channels between medical teams and agencies are lacking; (4) aides are an important source of patient information; and (5) aides report important information, but rarely receive it. Removing structural communication barriers; incentivizing reporting channels and information sharing between aides, agencies, and primary care teams; and integrating aides into interdisciplinary teams may improve coordination of medical and long-term care.

Home health aides (HHAs) provide care to many adults with heart failure (HF) in the home. As the demand for HHAs increases, there is a need to promote HHAs' job satisfaction and retention. In this cross-sectional community-partnered study, we examined whether mutuality (e.g., quality of the HHA-patient relationship), is associated with job satisfaction among HHAs caring for adults with HF. Mutuality was assessed with the Mutuality Scale, which measures overall mutuality and its four domains (reciprocity, love and affection, shared pleasurable activities, and shared values). Our final sample of 200 HHAs was primarily female. The mean overall mutuality score was 2.92 out of 4 (SD 0.79). In our final model, overall mutuality and each of the four domains were associated with increased job satisfaction; however, only the shared pleasurable activities domain was significant (aPR: 1.15 [1.03-1.32]). Overall, mutuality may play a role in promoting job satisfaction among HHAs.

Paid caregivers (e.g., home health aides, home care workers) provide essential care to people with dementia living at home; this study explored family caregiver perspectives on the role and impact of paid caregivers in home-based dementia care. We conducted semi-structured interviews with family caregivers ( n = 15) of people with advanced dementia who received long-term paid care at home in New York between October 2020 and December 2020. We found that given the vulnerability resulting from advanced dementia, family caregivers prioritized finding the "right" paid caregivers and valued continuity in the individual providing care. The stable paid care that resulted improved outcomes for both the person with advanced dementia (e.g., eating better) and their family (e.g., ability to work). Those advocating for high quality, person-centered dementia care should partner with policymakers and home care agencies to promote the stability of well-matched paid caregivers for people with advanced dementia living at home.

As part of its Medicaid program restructuring, New York State funded 11 Workforce Investment Organizations (WIO) to support training initiatives for the long-term care workforce. Focusing on one WIO, this formative evaluation examined quality improvement training programs delivered to 11,163 Home Health Aides employed by home care agencies serving clients of Managed Long-Term Care plans. Results are presented from a thematic analysis of qualitative interviews with organizational and program stakeholders examining contextual factors influencing program objectives, implementation, barriers and facilitators, and perceived outcomes. Findings suggested that WIO training programs were implemented during a period of shifting organizational strategies alongside value-based payment reforms and challenges to aide recruitment and retention. Stakeholders appraised WIO training programs positively and valued program flexibility and facilitation of communication and collaboration between agencies and plans. However, delivery and implementation challenges existed, and industry-wide structural fragmentation led stakeholders to question the WIO's larger impact.

Background: Home health aides are important but often overlooked members of care teams, providing functional and emotional support to patients. These services became increasingly important during the COVID-19 pandemic as older adults faced disruptions in in-person medical services and family caregiving. Understanding how aides supported healthcare teams is important for informing emergency planning and better integrating home health services with primary care., Objective: To describe aides' roles in supporting veterans and working with primary care teams during COVID-19 and identify COVID-related changes in tasks., Design: Semi-structured interviews., Participants: Eight home health aides, 6 home health agency administrators, and 9 primary care team members (3 RNs, 3 social workers, 3 MDs) serving veterans at a large, urban, Veterans Affairs medical center., Approach: Combined deductive and inductive analysis to identify a priori concepts (aide roles; changes in tasks and new tasks during COVID-19) and emergent ideas. Aide, administrator, and provider interviews were analyzed separately and compared and contrasted to highlight emergent themes and divergent perspectives., Key Results: Participants reported an increase in the volume and intensity of tasks that aides performed during the pandemic, as well as the shifting of some tasks from the medical care team and family caregivers to the aide. Four main themes emerged around aides' roles in the care team during COVID-19: (1) aides as physically present "boots on the ground" during medical and caregiving disruptions, (2) aides as care coordination support, (3) aides as mental health support, and (4) intensification of aides' work., Conclusions: Home health aides played a central role in coordinating care during the COVID-19 pandemic, providing hands-on functional, medical, and emotional support. Integrating aides more formally into healthcare teams and expanding their scope of practice in times of crisis and beyond may improve care coordination for older veterans., (© 2022. This is a U.S. government work and not under copyright protection in the U.S.; foreign copyright protection may apply.)

Workers engaged in reproductive labor-the caring work that maintains society and supports its growth-contribute to societal health while also enduring the harms of precarious labor and substantial work stress. How can we conceptualize the effects of reproductive labor on workers and society simultaneously? In this commentary, we analyze four types of more relational and less relational careworkers-homeless shelter workers, school food workers, home care aides, and household cleaners-during the COVID-19 pandemic. We then make a case for a new model of societal health that recognizes the contributions of careworkers and healthy carework. Our model includes multi-sectoral social policies supporting both worker health and societal health and acknowledges several dimensions of work stress for careworkers that have received insufficient attention. Ultimately, we argue that the effects of reproductive labor on workers and society must be considered jointly, a recognition that offers an urgent vision for repairing and advancing societal health.

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.

As the locus of long-term care in the United States shifts from institutions to the community, paid caregivers (i.e., home health aides, personal care attendants) are providing more hands-on care to persons with dementia living at home. Yet, little is known about how family caregivers engage with paid caregivers. We conducted in-depth, semi-structured interviews ( n = 15) with family caregivers, of persons living at home with severe dementia, and enriched our findings with data from a second cohort of family caregivers of persons with dementia ( n = 9). Whether paid caregivers were hired privately or employed via a Medicaid-funded agency, family caregivers reported that they needed to manage paid caregivers in the home. Core management tasks were day-to-day monitoring and relationship building with family caregivers; training paid caregivers and coordinating care with homecare agencies was also described. In order to support family caregivers of individuals with dementia at home, it is important consider their preferences and skills in order to effectively manage paid caregivers. Support of efforts to build a high-quality paid caregiving workforce has the potential to improve not only care delivered to persons with dementia, but the experiences of their family caregivers.

Background: Home care workers (HCWs)-including home health aides, personal care aides, and other direct care workers-provide functional and other essential support that allows older, disabled, and seriously ill people to live at home. As a growing number of patients are aging and dying at home, HCWs are increasingly providing care at the end of life (EOL). Although prior qualitative studies have shown that patient death is an impactful and challenging experience for HCWs, the majority of HCWs receive almost no training on EOL issues. Objective: The goal of this scoping review is to identify intervention studies describing training of HCWs in EOL issues to map types of training and to assess the degree to which existing efforts address HCW health and well-being. Design: Our scoping review covered three databases and focused on articles published in English since 2000. Results: Of the 393 articles screened, 26 underwent full-text review and 6 met inclusion criteria. Only one article discussed training designed for and implemented with HCWs exclusively. Other trainings simultaneously targeted multiple kinds of workers. Supporting HCWs in reducing their stress and improving their coping skills was substantially addressed in only one article, although HCWs' emotional needs were addressed less centrally in several others. Conclusion: Our findings suggest that there is a paucity of EOL training interventions tailored specifically to the experiences and positioning of HCWs. We recommend that future intervention studies address the multiple facets of HCWs' stress related to patient death to improve EOL care in the home.

While there is a growing literature on home care workers, less is known about how home care companies market their services. Through a content analysis of the 19 largest U.S. home care and home health providers' websites, we examined how companies describe services, desired outcomes of care, and job responsibilities and qualifications. Companies actively market family-like relationships as central to "good care". However, companies' emphasis on unmeasurable skills such as compassion and warmth may also create exploitative work environments. Supporting "good care" requires improved data collection, industry oversight, and policy change to recognize socio-emotional care and protect a marginalized workforce.

Background and Objectives: Interventions to strengthen the home care workforce focus on workers' economic and physical well-being, without acknowledging the caring labor affecting emotional well-being. Our study examined workers' perceptions of the emotional effects of caring work, coping mechanisms, and desired support., Research Design and Methods: We conducted 4 worker focus groups (n = 27). Moderators cross-checked codes and themes, and aides provided input through report-backs., Results: Building close, trusting relationships with clients was central to aides' emotional well-being. Well-being was also influenced by relationships with client families and agency supervisors, work-life balance, and the level to which aides felt their work was valued. Aides were largely alone in managing job stressors and desired more communication, connection, and support from supervisors and peers., Discussion and Implications: Recognizing and supporting the emotional demands of caring work is crucial to strengthening the workforce. Policy makers and agencies must realign reimbursement systems, job descriptions, and care plans to include measures of emotional labor, improve communication between workers and supervisors, and provide training, mental health benefits, and peer support., (© The Author(s) 2018. Published by Oxford University Press on behalf of The Gerontological Society of America. All rights reserved. For permissions, please e-mail: journals.permissions@oup.com.)

Home care payment models, quality measures, and care plans are based on physical tasks workers perform, ignoring relational care that supports clients' cognitive, emotional, and social well-being. As states seek to rein in costs and improve the efficiency and quality of care, they will need to consider how to measure and support relational care. In four focus groups ( n = 27) of unionized, agency-based New York City home health aides, workers reported aide-client relationships were a cornerstone of high-quality care, and building them required communication, respect, and going the extra mile. Since much of this care was invisible outside the worker-client relationship, aides received little supervisory support and felt excluded from the formal care team. Aligning payment models with quality requires understanding the full scope of services aides provide and a quality work environment that offers support and supervision, engages aides in patient care, and gives them a voice in policy decisions.

Background and Objectives As long-term care increasingly moves from facilities to the community, paid caregivers (e.g. home health aides, other home care workers) will play an increasingly important role in the care of people with dementia. This study explores the paid caregiver role in home-based dementia care and how that role changes over time. Research Design and Methods We conducted individual, longitudinal interviews with the paid caregiver, family caregiver, and geriatrician of 9 people with moderate-to-severe dementia in the community; the 29 total participants were interviewed on average 3 times over 6 months, for a total of 75 interviews. Interviews were recorded, transcribed, and analyzed with structured case summaries and framework analysis. Results Paid caregivers took on distinct roles in the care of each client with dementia. Despite changes in care needs over the study period, roles remained consistent. Paid caregivers, family caregivers, and geriatricians described the central role of families in driving the paid caregiver role. Paid and family caregivers collaborated in the day-to-day care of people with dementia; paid caregivers described their emotional relationships with those they cared for. Discussion and Implications Rather than simply providing functional support, paid caregivers provide nuanced care tailored to the needs and preferences of not only each person with dementia (i.e. person-centered care), but also their family caregivers (i.e. family-centered care). Deliberate cultivation of person-centered and family-centered home care may help maximize the positive impact of paid caregivers on people with dementia and their families. [ABSTRACT FROM AUTHOR]

Background: Home health aides are important but often overlooked members of care teams, providing functional and emotional support to patients. These services became increasingly important during the COVID-19 pandemic as older adults faced disruptions in in-person medical services and family caregiving. Understanding how aides supported healthcare teams is important for informing emergency planning and better integrating home health services with primary care. Objective: To describe aides' roles in supporting veterans and working with primary care teams during COVID-19 and identify COVID-related changes in tasks. Design: Semi-structured interviews. Participants: Eight home health aides, 6 home health agency administrators, and 9 primary care team members (3 RNs, 3 social workers, 3 MDs) serving veterans at a large, urban, Veterans Affairs medical center. Approach: Combined deductive and inductive analysis to identify a priori concepts (aide roles; changes in tasks and new tasks during COVID-19) and emergent ideas. Aide, administrator, and provider interviews were analyzed separately and compared and contrasted to highlight emergent themes and divergent perspectives. Key Results: Participants reported an increase in the volume and intensity of tasks that aides performed during the pandemic, as well as the shifting of some tasks from the medical care team and family caregivers to the aide. Four main themes emerged around aides' roles in the care team during COVID-19: (1) aides as physically present "boots on the ground" during medical and caregiving disruptions, (2) aides as care coordination support, (3) aides as mental health support, and (4) intensification of aides' work. Conclusions: Home health aides played a central role in coordinating care during the COVID-19 pandemic, providing hands-on functional, medical, and emotional support. Integrating aides more formally into healthcare teams and expanding their scope of practice in times of crisis and beyond may improve care coordination for older veterans. [ABSTRACT FROM AUTHOR]

While many types of health care workers experience patient death, home care workers do so under vastly different social and economic circumstances. When a client dies, home care workers often lose both a close relationship and a job. Though research suggests that health care workers' grief may frequently be disenfranchised, there is no in-depth study of the mechanisms that disenfranchise home care workers' grief specifically. To address this gap, our study used focus groups and peer interviews between home care workers in New York City. We describe four interrelated grief strategies they employ to navigate social and employer-based "grieving rules." Our findings suggest that home care workers' grief is disenfranchised via employer and societal underestimations of their relationships with clients and their losses when clients die, particularly job loss. Building on our findings, we suggest alterations to agency practices and home care systems to improve support for workers. [ABSTRACT FROM AUTHOR]

Home care payment models, quality measures, and care plans are based on physical tasks workers perform, ignoring relational care that supports clients' cognitive, emotional, and social well-being. As states seek to rein in costs and improve the efficiency and quality of care, they will need to consider how to measure and support relational care. In four focus groups (n = 27) of unionized, agency-based New York City home health aides, workers reported aide–client relationships were a cornerstone of high-quality care, and building them required communication, respect, and going the extra mile. Since much of this care was invisible outside the worker–client relationship, aides received little supervisory support and felt excluded from the formal care team. Aligning payment models with quality requires understanding the full scope of services aides provide and a quality work environment that offers support and supervision, engages aides in patient care, and gives them a voice in policy decisions. [ABSTRACT FROM AUTHOR]

1. Illustrate the role of home care workers (HCWs) in caring for homebound older adults during COVID-19 2. Characterize disruptions in HCW services in the setting of COVID-19 and how these impacted the ability of patients to stay safely at home 3. Identify the impact of HCW services on patients and their family and other unpaid caregivers The devastating impact of the COVID-19 pandemic has made the need for quality home-based care for homebound older adults with serious illness clear. Home care workers (HCWs) played a critical role in keeping homebound older adults safely at home during COVID-19, yet their essential work is often undervalued and understudied. To illustrate the roles of HCWs during COVID-19 and how HCW service disruptions impacted patients and their caregivers. We collected demographic and clinical data and performed a thematic analysis of medical records from 53 patients with HCWs in a home-based primary and palliative care practice in New York City. We abstracted unstructured clinical notes between 12/1/2019 and 12/31/2020 into a priori and emergent categories and identified core themes via discussion in team meetings. Of the 53 patients, 24.5% died during the initial COVID surge, 34% lived alone, and 41.5% had 24-hour HCWs. The following five themes emerged: Changes to HCW roles included taking on new medical tasks and increased intensity of existing tasks (e.g., managing progressing dementia behaviors); delays in staffing contributed to changes in HCW hours and continuity, including unexpected loss of services; disruptions in HCW services put patients at risk of hospitalization and nursing home placement due to safety concerns; payment structure and patient preferences made it challenging to get sufficient hours of paid care; and lack of adequate and high-quality HCW services created additional caregiver responsibilities and caregiver burden. During COVID-19, HCWs were essential to keeping homebound older adults safely at home. Inadequate HCW services, including unstable schedules and inadequate hours of paid care, became particularly disruptive, leading to risk of hospitalization and prolonged length of stay. This analysis can inform policies encouraging better integration of HCWs on medical teams and addressing workforce shortages to expand access to adequate HCW services for homebound older adults and their caregivers to manage serious illness and end-of-life care. [ABSTRACT FROM AUTHOR]