Understanding the home hospice experience of Puerto Rican caregivers.

Abstract

Hospice use among Hispanic Medicare beneficiaries has declined in the last few years, and Hispanic caregivers have reported insufficient support around the emotional and spiritual aspects of care. Understanding the home hospice experience of Puerto Rican (PR) caregivers can yield insight into ways to improve hospice participation and quality of care for the Hispanic population. This exploratory study utilizes qualitative methods to identify PR caregivers' experience in the setting of home hospice care. Data from interviews with eight (n=8) bereaved PR caregivers of patients who received home hospice care were qualitatively analyzed. Participants were mostly well-educated (n=6/8) female caregivers caring for their parent (n=7/8) with mean age of 57 [standard deviation (SD) =13] years. Emerging domains from the study included (I) symptom management; (II) cultural and religious values; and (III) interaction with hospice providers. Caregivers found managing patients' loss of appetite, pain, anxiety, and confusion to be challenging. They identified family-centered values and religious support as culturally important, which manifested as the need for frequent communication from hospice providers and increased support and education at the end-of-life. Culturally tailored interventions that focus on managing symptoms, tailoring care to support family-centered values, integrating religious officials representative of the patient's beliefs into the hospice team, and communicating effectively with providers may reduce the burden experienced by PR caregivers in home hospice and improve outcomes for patients and caregivers. Additional research will aid in the development of evidence-based intervention and policies urging healthcare providers to offer culturally appropriate hospice care and resources to this population.