Perceptions of the Pediatric Hospice Experience among English- and Spanish-Speaking Families

Abstract

OBJECTIVE: Many children who die are eligible for hospice enrollment but little is known about parental perceptions of the hospice experience, the benefits, and disappointments. The objective of this study was to explore parental perspectives of the hospice experience in children with cancer, and to explore how race/ethnicity impacts this experience. STUDY DESIGN: We held 20 semistructured interviews with 34 caregivers of children who died of cancer and used hospice. Interviews were conducted in the caregivers’ primary language: 12 in English and 8 in Spanish. Interviews were recorded, transcribed, and analyzed using accepted qualitative methods. RESULTS: Both English and Spanish speakers described the importance of honest, direct communication by medical providers, and anxieties surrounding the expectation of the moment of death. Five English-speaking families returned to the hospital because of unsatisfactory symptom management and the need for additional supportive services. Alternatively, Spanish speakers commonly stressed the importance of being at home and did not focus on symptom management. Both groups invoked themes of caregiver appraisal, but English-speaking caregivers more commonly discussed themes of financial hardship and fear of insurance loss, while Spanish-speakers focused on difficulties of bedside caregiving and geographic separation from family. CONCLUSIONS: The intense grief associated with the loss of a child creates shared experiences, but Spanish- and English-speaking parents describe their hospice experiences in different ways. Additional studies in pediatric hospice care are warranted to improve the care we provide to children at the end of life.