African Americans and Hospice Care: A Narrative Analysis

Area of Science:

• End-of-life care research
• Sociology of health
• Health disparities

Background:

• African Americans experience more expensive and lower quality end-of-life care compared to non-Hispanic whites.
• Increased hospice enrollment is proposed to improve end-of-life care for African Americans.
• Limited research exists on the hospice experiences of African American patients and their caregivers.

Purpose of the Study:

• To explore African American patients' and lay caregivers' evaluations of their hospice experiences.
• To identify common themes and narratives within these experiences.
• To inform strategies for improving hospice access and quality for marginalized populations.

Main Methods:

• Conducted 39 in-depth interviews with 26 participants (African American patients and their lay caregivers).
• Utilized a modified narrative typology (Bute & Jensen, 2011) to analyze interview data.
• Categorized patient and caregiver stories into narratives of satisfaction, regret, and ambivalence.

Main Results:

• Identified three distinct narrative categories reflecting diverse hospice experiences: satisfaction, regret, and ambivalence.
• Highlighted specific factors contributing to positive and negative hospice evaluations among African Americans.
• Provided qualitative insights into the nuances of end-of-life care decision-making and experiences.

Conclusions:

• Understanding the varied hospice experiences of African Americans is crucial for improving care.
• Addressing specific concerns within narratives of regret and ambivalence can enhance hospice services.
• Findings can guide interventions to promote equitable access to high-quality end-of-life care for marginalized communities.