Exploring the Challenges that Family Caregivers Faced When Caring for Hospice Patients with Heart Failure

Abstract

Although patients with heart disease comprise the second largest diagnostic group in hospice care, the challenges faced by family caregivers of hospice patients with heart failure are poorly understood and often go unaddressed. This study explored the challenges and needs of family caregivers of adults with advanced heart failure receiving hospice care in the home. The baseline quantitative and qualitative data from 28 family caregivers’ participation in a large-scale hospice clinical trial of a problem-solving therapy intervention were analyzed. The quantitative data showed that family caregivers were mildly anxious and had worse financial and physical quality of life than their social and emotional quality of life. The qualitative data showed that caregiver challenges were related to patient care and symptom management, inadequate social support, communication issues, and financial concerns. The results provide insight to hospice social workers and researchers to develop practical tools that can be used in routine care to evaluate family caregivers’ needs comprehensively.

Keywords:

• Heart failure
• hospice
• end-of-life care
• family
• caregiver
• caregiving

Additional information

Funding

This study was supported in part by the NIH National Institute on Nursing Research [grant no. R01NR012213, G. Demiris PI, 2011–2015].