"A Major Issue": The Impact of the COVID-19 Pandemic on How Home Care Leaders Perceive and Promote Aides' Mental Health and Well-Being.

Home care aides play a critical role in the care of older adults, but they do this under difficult working conditions. The COVID-19 pandemic exacerbated aides' stress and worsened their mental health, raising the question of how agencies can better support aides. We explore how home care industry leaders in New York perceived and addressed home care aides' mental health and well-being prior to and during the pandemic through in-depth interviews conducted in 2019 (n = 8 agencies) and 2022 (n = 14 agencies). We found that these topics became more central in leaders' thinking, reflected in a range of new internally and externally funded agency actions, albeit limited by ongoing financial constraints. Maintaining a skilled and reliable aide workforce is critical to societal health but will remain challenging without continued investment in aide support of the kind described in the Surgeon General's Framework for Workplace Mental Health and Well-Being.

Critical Dynamics in Black and Latino Parents' Perceptions of Childhood COVID-19 Vaccination: How the "Middle" Moves.

National and state data show low adoption of childhood COVID-19 vaccinations, despite emergency use authorizations and availability. We conducted 24 in-depth, semi-structured interviews with Black and Latino parents in New York City (15 in English, 9 in Spanish), who were undecided or somewhat likely to vaccinate their 5 to 11-year-old children in early 2022. The interviews explored the evolution of parental perceptions on childhood COVID-19 vaccines, and were analyzed using a matrix-driven rapid approach to thematic analysis. We present our findings as themes oriented around trust at three levels of the social ecological model. In summary, we found that structural positionality and historical traumas of participants seeded mistrust in institutions and government. This led to parental reliance on personal observations, conversations, and norms within social groups for vaccine decision-making. Our findings also describe key features of trust-building, supportive conversations that shaped the thinking of undecided parents. This study demonstrates how relational trust becomes a key factor in parental vaccine decision-making, and suggests the potential power of community ambassador models of vaccination promotion for increasing success and rebuilding trust with members of the "movable middle."

Psychosocial and Health-Related Behavioral Outcomes of a Work Readiness HIV Peer Worker Training Program.

Targeted work readiness training is an important approach to help people living with HIV (PLHIV) to overcome their unique barriers to work, while addressing social determinants of health needs. This study assesses the psychosocial impacts of a work readiness training and internship program among HIV peer workers in New York City. From 2014 through 2018, 137 PLHIV completed the training program, and 55 individuals completed both the training and the six-month peer internship. Depression, HIV internalized stigma, self-esteem, HIV medication adherence, patient self-advocacy, and safer sex communication apprehension were used as outcome measures. Paired t-tests were performed to determine if significant score changes occurred at the individual level before and after each training. Our results show that participating in the peer worker training program significantly decreased depression and internalized HIV stigma, and significantly increased self-esteem, medication adherence, and patient self-advocacy. The study underscores that peer worker training programs are important tools to improve not only the work readiness of PLHIV, but also psychosocial and health outcomes. Implications for HIV service providers and stakeholders are discussed.

To care for them, we need to take care of ourselves: A qualitative study on the health of home health aides.

OBJECTIVE: To understand the perspectives of home health aides (HHAs) toward their own health and health behaviors, and how their job impacts both. DATA SOURCES AND STUDY SETTING: Interviews were conducted with 28 HHAs from 16 unique home care agencies from August 2021 to January 2022. The study was conducted in partnership with the 1199SEIU Training and Employment Fund, a labor-management fund of the largest health care union in the US. STUDY DESIGN: A qualitative study with English and Spanish-speaking HHAs. Interviews were conducted using a semi-structured topic guide, informed by Pender's Health Promotion Model and the National Institute for Occupational Safety and Health's Total Worker Health Model. To be eligible, HHAs had to be currently employed by a home care agency in New York, NY. DATA COLLECTION/EXTRACTION METHODS: Interviews were recorded, professionally transcribed, and analyzed thematically. PRINCIPAL FINDINGS: The 28 HHAs had a mean age of 47.6 years (SD 11.1), 39% were non-Hispanic Black, 43% were Hispanic, and they had a mean of 14.1 years (SD 7.8) of job experience. Five themes emerged; HHAs were: (1) Healthy enough to work, but were managing their own chronic conditions while working; (2) Motivated to be healthy, in part driven by their desire to care for others; (3) Worked closely with sick patients, which influenced their perceptions of health; (4) Experienced occupational and patient-level barriers to practicing healthy behaviors; (5) Sought support and resources to improve their health and wellbeing. CONCLUSIONS: HHAs have numerous health challenges, many of which are influenced by their job. Culturally and occupationally tailored interventions may mitigate the barriers that HHAs experience to achieve optimal health.

How client death impacts home care aides' workforce outcomes: an exploratory analysis of return to work and job retention.

Home health aides face a range of stressors that may result in departing the workforce. One stressor that has emerged in multiple qualitative studies as potentially influencing retention is client death. Using 2019 data from a single agency in New York City employing approximately 1700 aides, we used logistic and linear regression to explore case and aide factors associated with workforce outcomes after client death. We found that longer case length (Beta = 0.01, p < .001) was associated with longer return to work for aides experiencing client death and longer job tenure (Beta = -0.002, p = .002) was associated with shorter return to work (n = 67). We found no difference in retention between aides who experienced client death and those who did not (n 216). This analysis suggests the importance of research on the period of time following client death and of offering support to aides after clients die, particularly after longer cases.

Essential but Excluded: Building Disaster Preparedness Capacity for Home Health Care Workers and Home Care Agencies.

COVID-19 has demonstrated the essential role of home care services in supporting community-dwelling older and disabled individuals through a public health emergency. As the pandemic overwhelmed hospitals and nursing homes, home care helped individuals remain in the community and recover from COVID-19 at home. Yet unlike many institutional providers, home care agencies were often disconnected from broader public health disaster planning efforts and struggled to access basic resources, jeopardizing the workers who provide this care and the medically complex and often marginalized patients they support. The exclusion of home care from the broader COVID-19 emergency response underscores how the home care industry operates apart from the traditional health care infrastructure, even as its workers provide essential long-term care services. This special article (1) describes the experiences of home health care workers and their agencies during COVID-19 by summarizing existing empiric research; (2) reflects on how these experiences were shaped and exacerbated by longstanding challenges in the home care industry; and (3) identifies implications for future disaster preparedness policies and practice to better serve this workforce, the home care industry, and those for whom they care.

Awareness, Acceptance, Avoidance: Home Care Aides' Approaches to Death and End-of-Life Care.

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.

"We want to hear your problems and fix them": A case study of pandemic support calls for home health aides.

Home health aides and home care agencies, who operate in a high work stress environment under normal conditions, were placed under extraordinary demands during the COVID-19 pandemic. In this paper, we examine the unfolding effort at one agency in New York City to offer phone-based support calls to aides. We used a qualitative, single case study design involving semi-structured interviews with call staff and agency leaders (n = 9) and analysis of one year of thematic notes from the calls. We found that the calls resulted in multidirectional communication between agency staff and aides, an increased sense of empathy among staff, and a greater integration of aides into the agency's overall infrastructure. We explore how these calls might contribute to aide retention, worker voice, and mental health. We note the facilitators and barriers to implementing this type of job-based support to help other agencies that may be considering similar models.

"I Am the Home Care Agency": The Dementia Family Caregiver Experience Managing Paid Care in the Home.

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.

Recognizing careworkers' contributions to improving the social determinants of health: A call for supporting healthy carework.

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.

Receipt of Hospice Aide Visits Among Medicare Beneficiaries Receiving Home Hospice Care.

CONTEXT: Hospice aides provide essential direct care to hospice patients, yet there is minimal research examining hospice aide visits. OBJECTIVES: describe the prevalence and frequency of hospice aide visits, and 2) evaluate patient, community, and hospice characteristics associated with these visits. METHODS: Longitudinal cohort study of Medicare Current Beneficiary Survey (MCBS) participants who died between 2010-2018 and received routine hospice care in the 6 months prior to death (n = 674). We characterized prevalence and frequency of hospice aide visits over time and used generalized linear modelling to identify factors associated with visits. RESULTS: 64% of hospice enrollees received hospice aide visits and average visit frequency (1.3 per week) remained stable throughout enrollment. The only patient characteristic associated with receipt of hospice aide visits was primary hospice diagnosis (respiratory diagnosis vs. dementia: OR 0.372, P = 0.040). Those living in community-based residential housing and those cared for by hospices with aides employed as staff were more likely to receive any hospice aide visits (OR 2.331, P = 0.047 and OR 4.612, P = 0.002, respectively.) CONCLUSION: Hospice aide visits are a common component of hospice care, but visit frequency does not increase as death approaches. Receipt of hospice aide visits was primarily associated with community and hospice agency (rather than patient) characteristics. Future work is needed to ensure that hospice aides are integrated in the hospice interdisciplinary team and that access to hospice aide visits is meaningfully driven by patient and family needs, rather than the practice norms and business models of individual hospice agencies.

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.

Expanding the Conceptualization of Support in Low-Wage Carework: The Case of Home Care Aides and Client Death.

Home care aides are a rapidly growing, non-standard workforce who face numerous health risks and stressors on the job. While research shows that aides receive limited support from their agency employers, few studies have explored the wider range of support that aides use when navigating work stress and considered the implications of these arrangements. To investigate this question, we conducted 47 in-depth interviews with 29 home care aides in New York City, focused specifically on aides' use of support after client death. Theories of work stress, the social ecological framework, and feminist theories of care informed our research. Our analysis demonstrates aides' extensive reliance on personal sources of support and explores the challenges this can create in their lives and work, and, potentially, for their communities. We also document aides' efforts to cultivate support stemming from their home-based work environments. Home care aides' work stress thus emerges as both an occupational health and a community health issue. While employers should carry responsibility for preventing and mitigating work stress, moving toward health equity for marginalized careworkers requires investing in policy-level and community-level supports to bolster employer efforts, particularly as the home care industry becomes increasingly fragmented and non-standard.

Exploring the Link Between the Hazards and Value of Work, and Overcoming Risk for Community-Based Health Interventions for Immigrant Latinx Low-Wage Workers.

Few studies integrate work and immigration as intersecting social determinants of health. We synthesize data from 12 focus groups (N = 97) originating from two separate community-engaged studies that originally centered on exploring barriers to health and hazards of work among immigrant Latinx women and men to explore the role of work in their overall health and well-being. The three major interrelated themes we drew from this research-hazards of work, value of work, and building agency to overcome risk-provide insights that can help to reframe and begin to operationalize how community-based health promotion practice might better incorporate workplace issues for Latinx low-wage workers. The value of work, and its subtheme, pride in performing well specifically, could be engaged by workers to actively change conditions for themselves and others. We discuss findings in light of previous occupational health research and implications for community-based intervention design and practice.

Professional, friend or family?: How home care companies sell emotional care.

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.

Training to Reduce Home Care Aides' Work Stress Associated with Patient Death: A Scoping Review.

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.

Beyond Functional Support: The Range Of Health-Related Tasks Performed In The Home By Paid Caregivers In New York.

Paid caregivers (for example, home health aides and personal care attendants) are formally tasked with helping older adults with functional impairment meet their basic needs at home. This study used thirty semistructured interviews with dyads of patients or their proxies and their paid caregivers in New York City to understand the range of health-related tasks that paid caregivers perform in the home and determine whether these tasks are taught in the New York State Department of Health's curriculum. We found that patients, proxies, and paid caregivers all reported that paid caregivers performed a wide range of health-related tasks that were often not part of their formal training. Creating clear competencies for paid caregivers that reflect the full breadth of health-related tasks they may perform in the home could help maximize the positive impact of the paid caregiver workforce on the lives of patients living at home with functional impairment.