Pediatric advance care planning has positively impacted English-speaking adolescents with cancer and HIV, but it has not been studied in other populations — exacerbating health disparities. In a new study published in Clinical Practice in Pediatric Psychology, Maureen E. Lyon, Ph.D., lead author and clinical health psychologist at Children’s National Hospital, and other experts look to adapt and refine the evidence-based Family-Centered Advance Care Planning for Teens with Cancer (FACE®-TC) for Spanish-speaking adolescents with cancer. Using a community-based participatory approach and key informant interviews with patients and families, the experts identified important themes and outcomes.
Despite research showing how vital advance care planning conversations are between adolescents with cancer and their families, the efficacy of pediatric advance care planning has not been studied in Hispanic adolescents living with cancer. According to the authors, this creates a health disparity as Hispanic adolescents with cancer and their families do not have access to or provision of this potentially beneficial service.
“If successfully adapted, FACE-TC Spanish would benefit patient’s communication with their families about their end-of-life treatment preferences if the worse were to happen and they could not communicate,” Dr. Lyon said. “It could also increase families’ positive appraisal of their caregiving and increase communication about goals of care with treating physicians, so the first conversation about goals of care is not in the intensive care unit.”
The study’s findings showed that first-generation Spanish-speaking individuals living in the Washington D.C., Maryland and Virginia area wanted community education about advance care planning for Spanish-speaking adults, many of whom were unfamiliar with the concept.
These findings, in turn, showed the need for future research to include informational messages on Hispanic radio stations, educational workshops or radionovelas.
“We learned that fear of deportation meant that potential participants only felt safe to participate while at the hospital,” Dr. Lyon added. “Because of COVID-19, this was not feasible during the study period. There was consensus that families should be involved in the conversations and that the goals of care conversations and advance directives should be communicated to the physician.”
While this is the first study to adapt a family-centered approach to pediatric advance care planning for Spanish-speaking teens with cancer and their families, it is consistent with cultural values of ‘familismo’ (family) and ‘respecto’ (respect).