Journal article
Empowering parents of pediatric surgical oncology patients through collaborative engagement with surgeons
Journal of pediatric surgery, Vol.58(9), pp.1736-1743
09/2023
DOI: 10.1016/j.jpedsurg.2022.12.029
PMCID: PMC10310883
PMID: 36697360
Abstract
Background
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.
Methods
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.
Results
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.
Conclusions
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.
Details
- Title: Subtitle
- Empowering parents of pediatric surgical oncology patients through collaborative engagement with surgeons
- Creators
- Erica M. CarlisleLaura A. ShinkunasMaxwell T. LiebermanRichard M. HoffmanHeather Schacht Reisinger
- Resource Type
- Journal article
- Publication Details
- Journal of pediatric surgery, Vol.58(9), pp.1736-1743
- DOI
- 10.1016/j.jpedsurg.2022.12.029
- PMID
- 36697360
- PMCID
- PMC10310883
- ISSN
- 0022-3468
- eISSN
- 1531-5037
- Grant note
- DOI: 10.13039/100008893, name: University of Iowa; DOI: 10.13039/100000002, name: National Institutes of Health; DOI: 10.13039/100000048, name: American Cancer Society, award: IRG – 18-165-43; DOI: 10.13039/100006108, name: National Center for Advancing Translational Sciences, award: UL1TR002537
- Language
- English
- Electronic publication date
- 12/2022
- Date published
- 09/2023
- Academic Unit
- Medical Ethics; Stead Family Department of Pediatrics; Epidemiology; Surgery; Center for Social Science Innovation; General Internal Medicine; Internal Medicine
- Record Identifier
- 9984353989602771
Metrics
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