“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 (HCWs) 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 HCWs 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 HCWs with HF clients were eligible to participate. Data were analyzed thematically. Forty-six HCWs employed by 21 unique home care agencies participated. General and HF-specific themes emerged. Generally, HCWs (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, HCWs (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 HCWs 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 HCWs’ ability to care for adults with HF and potentially lead to better patient outcomes.