Understanding the home hospice experience of Puerto Rican caregivers

Area of Science:

• Gerontology
• Sociology
• Public Health

Background:

• Hospice utilization is declining among Hispanic Medicare beneficiaries.
• Hispanic caregivers report unmet needs in emotional and spiritual support during end-of-life care.
• Understanding the experiences of Puerto Rican caregivers is crucial for improving hospice care for the Hispanic population.

Purpose of the Study:

• To explore the home hospice experiences of Puerto Rican caregivers.
• To identify challenges and needs faced by Puerto Rican caregivers in home hospice settings.
• To inform the development of culturally sensitive hospice care interventions.

Main Methods:

• Qualitative exploratory study.
• Interviews conducted with eight bereaved Puerto Rican caregivers of patients receiving home hospice care.
• Thematic analysis of interview data to identify emerging domains.

Main Results:

• Key domains identified: symptom management, cultural/religious values, and interaction with hospice providers.
• Caregivers experienced challenges in managing patient symptoms like appetite loss, pain, anxiety, and confusion.
• Culturally important factors include family-centered values and religious support, necessitating frequent communication and end-of-life education.

Conclusions:

• Culturally tailored interventions are needed to address symptom management and support family values.
• Integrating religious officials and improving communication with hospice providers can reduce caregiver burden.
• Evidence-based interventions and policies promoting culturally appropriate hospice care are essential for Hispanic populations.