Empowering parents of pediatric surgical oncology patients through collaborative engagement with surgeons

• Published in: Journal of pediatric surgery 2023-09, Vol.58 (9), p.1736-1743
• Main Authors: Carlisle, Erica M., Shinkunas, Laura A., Lieberman, Maxwell T., Hoffman, Richard M., Reisinger, Heather Schacht
• Format: Article
• Language: English
• Subjects: Cancer; Child; Collaborative engagement; Decision Making; Humans; Neoplasms - surgery; Parent empowerment; Parents - psychology; Pediatric surgery; Power, Psychological; Qualitative Research; Question prompt list; Surgeons
• ISSN: 0022-3468; 1531-5037; 1531-5037
• DOI: 10.1016/j.jpedsurg.2022.12.029

Ninety percent of parents of pediatric oncology patients report distressing, emotionally burdensome healthcare interactions. Assuring supportive, informative treatment discussions may limit parental distress. Here, we interview parents of pediatric surgical oncology patients to better understand parental preferences for surgical counseling. We interviewed 10 parents of children who underwent solid tumor resection at a university-based, tertiary children's hospital regarding their preferences for surgical discussions. Thematic content analysis of interview transcripts was performed using deductive and inductive methods. Three main themes were identified: (1) the emotional burden of a pediatric cancer diagnosis; (2) complexities of treatment discussions; (3) collaborative engagement between parents and surgeons. Within the collaborative engagement theme, there were four sub-themes: (1) variable informational needs; (2) parents as advocates; (3) parents as gatekeepers of information delivery to their children, family, friends, and community; (4) parental receptivity to structured guidance to support treatment discussions. Two cross-cutting themes were identified: (1) perception that no treatment decision needed to be made regarding surgery and (2) reliance on diverse support resources. Parents feel discussions with surgeons promote informed involvement in their child's care, but they recognize that there may be few decisions to make regarding surgery. Even when parents perceive that there are there are no decisions to make, they prioritize asking questions to advocate for their children. The emotional burden of a cancer diagnosis often prevents parents from knowing what questions to ask. Merging this data with our prior pediatric surgeon interviews will facilitate development of a novel decision support tool that can empower parents to ask meaningful questions. III