Health Disparities: Barriers to Building Evidence for Effective Palliative End-of-Life Care for Spanish-Speaking Teens With Cancer

Abstract

Objective: The efficacy of pediatric advance care planning (pACP) has been demonstrated in English-speaking adolescents with cancer and HIV, but not in other populations. The purpose of this study was to (a) adapt and refine a three-session pACP intervention for Spanish-speaking adolescents with cancer and (b) evaluate the feasibility, acceptability, and safety. Method: Using a community-based participatory approach and key informant interviews, we identified important themes: respect for physicians, need for community education about pACP, fear of deportation, and the importance of including family for any pediatric intervention. Results: Using an iterative process, we adapted/refined an existing pACP protocol. The outcome was a culturally adapted and manualized curriculum with a manual of operating procedures, as well as consents, assents, study questionnaires, and a REDCap database in English and Spanish. Questionnaires about spirituality and religion were acceptable. Conclusions: Results suggest that pACP would be feasible, following community education, if delivered during a hospital visit with the patient and family together along with a Spanish-speaking facilitator so a translator is not needed. Support was needed to complete hospital documents, which even in Spanish were not always understandable.

Implications for Impact Statement

We adapted a culturally sensitive version of a pediatric advance care planning program. Challenges were cultural differences and fear of deportation. Study findings highlight the importance of pediatric psychologists’ role as community educators, advocates with legislators, and clinicians committed to tackling taboo subjects and decreasing health disparities.