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

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.