Ranking Future Outcomes Most Important to Parents of Children with Bronchopulmonary Dysplasia.

OBJECTIVE: To assess which potential future outcomes are most important to parents of children with bronchopulmonary dysplasia, a disease that affects future respiratory, medical, and developmental outcomes for children born preterm. STUDY DESIGN: We recruited parents from 2 children's hospitals' neonatal follow-up clinics and elicited their importance rating for 20 different potential future outcomes associated with bronchopulmonary dysplasia. These outcomes were identified and selected through a literature review and discussions with panels of parents and clinician stakeholders, via a discrete choice experiment. RESULTS: One hundred and 5 parents participated. Overall, parents ranked "Will my child be more vulnerable to other problems because of having lung disease?" as the most important outcome, with other respiratory health related outcomes also highly ranked. Outcomes related to child development and effects on the family were among the lowest ranked. Individually, parents rated outcomes differently, resulting in a broad distribution of importance scores for many of the outcomes. CONCLUSIONS: The overall rankings suggest that parents prioritize future outcomes related to physical health and safety. Notably, for guiding research, some top-rated outcomes are not traditionally measured in outcome studies. For guiding individual counseling, the broad distribution of importance scores for many outcomes highlights the extent to which parents differ in their prioritization of outcomes.

Parent perspectives on family-based psychosocial interventions in pediatric cancer: a mixed-methods approach.

Family-based interventions in pediatric cancer face challenges associated with integrating psychosocial care into a period of intensive treatment and escalating stress. Little research has sought input from parents on the role of interventions delivered shortly after diagnosis. This mixed-methods study obtained parents' perspectives on the potential role of family-based interventions. Twenty-five parents provided feedback on the structure and timing of psychosocial interventions via focus groups and a questionnaire. Qualitative analyses resulted in three themes that were illustrative of a traumatic stress framework: (1) tension between focusing on child with cancer and addressing other family needs, (2) factors influencing parents' perception of a shared experience with other parents, and (3) the importance of matching interventions to the trajectory of parent adjustment. Quantitative data indicated that parents preferred intervention within 6 months of diagnosis, with almost half favoring within 2 months of diagnosis, and the majority wanted interventions targeted to parents only. Qualitative themes highlight the importance of using a traumatic stress framework to inform the development of family-based interventions for those affected by pediatric cancer.