Pediatric palliative care research participation: do adolescent and adult patients and caregivers find it acceptable?

Introduction Palliative care has matured as a life-span field with an increasing research base. Advancing the field means understanding why patients and caregivers participate in palliative care research, and participation’s benefits and burdens. This study extended previous work to include greater diversity of clinical sampling and study design. Methods Prospective, multi-methods study examined reported benefits, burdens, and motivations associated with participation in pediatric palliative care research. Study pParticipants included patients, caregivers, and family members who enrolled in pediatric palliative care research, as well as individuals declining participation, within a single quaternary pediatric hospital system. Structured questionnaires were administered at enrollment and study completion; qualitative responses were analyzed thematically. Results 57 participants completed the questionnaires. Altruism and personal benefit were the most frequently cited motivations for enrollment at baseline and study completion. Emotional expression and the opportunity to help others were commonly identified as positive aspects of participation. The majority reported no discomfort and indicated willingness to participate in future research. The most frequent reasons given for declining participation were feeling overwhelmed, lack of interest, or study-specific aversion, rather than distress associated with palliative care research iPPC involvement. Discussion Participants consistently reported greater benefit than burden, suggesting that pediatric palliative care research participation is acceptable and often meaningful. Given the pre/post design, the findings suggest eligible participants are able to determine if actual study participation is likely beneficial for them or not. Supporting families as they consider research participation promotes ethical, sensitive, and inclusive research design. Identified patterns may guide research design for future investigators to continue to advance the science of pediatric palliative care across the lifespanresearch.