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.
Meaningful improvements in health require modifying the social determinants of health. As policies are often underlying causes of the living conditions that shape health, policy change becomes a health goal. This focus on policy has led to increasing interest in expanding the focus of community-based participatory research (CBPR) to change not only communities but also policies. To best realize this potential, the relationship between evidence and power in policy change must be more fully explored. Effective action to promote policies that improve population health requires a deeper understanding of the roles of scientific evidence and political power in bringing about policy change; the appropriate scales for policy change, from community to global; and the participatory processes that best acknowledge the interplay between power and evidence.
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.
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.
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.
Background
Home care workers (
HCW
s) increasingly provide long‐term and posthospitalization care for community‐dwelling adults with heart failure (
HF
). They observe, assist, and advise these patients, yet few studies have examined their role in
HF
. As the foundation for future interventions, we sought to understand the perspectives of
HCW
s caring for adults with
HF
.
Methods and Results
We conducted 8 focus groups in partnership with the Home Care Industry Education Fund, a benefit fund of the 1199 Service Employees International Union United Healthcare Workers East, the largest healthcare union in the United States. English‐ and Spanish‐speaking
HCW
s with
HF
clients were eligible to participate. Data were analyzed thematically. Forty‐six
HCW
s employed by 21 unique home care agencies participated. General and
HF
‐specific themes emerged. Generally,
HCW
s (1) feel overworked and undervalued; (2) find communication and care to be fragmented; (3) are dedicated to clients and families but are caught in the middle; and, despite this, (4) love their job. With respect to
HF
,
HCW
s (1) find it frightening and unpredictable; (2) are involved in
HF
self‐care without any
HF
training; and (3) find the care plan problematic.
Conclusions
Although frequently involved in
HF
self‐care, most
HCW
s have not received
HF
training. In addition, many felt poorly supported by other healthcare providers and the care plan, especially when their clients’ symptoms worsened. Interventions that provide
HF
‐specific training and aim to improve communication between members of the home health care team may enhance
HCW
s’ ability to care for adults with
HF
and potentially lead to better patient outcomes.
In response to increasing obesity, diabetes, and food-related contributions to climate change, many individuals and organizations are mobilizing to advocate for healthier and more just local and national food policies and systems. In this report, we describe and analyze the food movement in New York City, examine tensions within it, and consider its potential role in improving health and nutrition. We conclude by suggesting that public health professionals can amplify the health effects of such movements by creating opportunities for dialog with movement participants, providing resources such as policy-relevant scientific evidence, documenting problems and evaluating policies, and offering technical, political, and organizational development expertise.
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