“It's Like They Forget That the Word ‘Health’ Is in ‘Home Health Aide’”: Understanding the Perspectives of Home Care Workers Who Care for Adults With Heart Failure

Abstract

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.

Experiences of Home Health Care Workers in New York City During the Coronavirus Disease 2019 Pandemic

“…5 Home care workers are essential to the health of more than 7 million older adults who require care in the home. 6,7 In this issue of JAMA Internal Medicine, Sterling and colleagues 8 present the findings from in-depth interviews with 33 unionized home care workers (64% Black/African American participants, 18% Latinx/Hispanic participants, and 97% women) across the 5 boroughs of New York City. Thanks to the quick leveraging of relationships between a medical school and a union chapter, the highly efficient use of a skilled qualitative research team, and meticulous inductive qualitative analysis, the authors have provided a window into the vulnerability of home care workers during the COVID-19 pandemic.…”

“…Despite being integral to patient care, home health care workers-who are mostly middle-age women, people of color, and immigrants-are often an invisible and vulnerable workforce. 5,7 They work long hours, earn minimum wages, and have limited opportunities for career advancement. 8,9 Indeed, 1 of every 6 workers lives below the federal poverty line.…”

Eliciting the educational needs and priorities of home care workers on end-of-life care for patients with heart failure using nominal group technique

“…24 In light of this, previous research has highlighted the limited training that home care workers receive on heart failure symptoms and management. 12,[14][15][16] Given that heart failure has unique needs and disease trajectory and that home care workers' scope of care differs from that of family caregivers and healthcare providers, this study identified their educational needs and priorities as paid caregivers caring for heart failure patients at the end-of-life.…”

“…13 A majority of home care workers do not receive systematic training on and feel ill-equipped to provide endof-life care for heart failure patients. 12,[14][15][16] States in the U.S. have invested funds towards the training and development of home health workers; however, limited research has explored their training needs. 17 To address this gap, we elicited the educational needs and priorities of home care workers caring for community-dwelling adults with heart failure at the end-of-life.…”

Safety Trade-Offs in Home Care During COVID-19: A Mixed Methods Study Capturing the Perspective of Frontline Workers

“…Despite their role providing direct care to people with complex or fragile health conditions, home care workers are often an invisible sector of the healthcare workforce. [9][10][11][12] For these workers, social distancing is seldom possible. Although personal protective equipment (PPE) can help protect against transmission, [13][14][15] research shows that other than disposable gloves, the home care sector has lower access to PPE than other healthcare settings.…”