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

  • Erica M. Carlisle
    Correspondence
    Corresponding author at: Assistant Professor of Surgery and Pediatrics, Affiliate Faculty in the Program in Bioethics and Humanities, University of Iowa, 200 Hawkins Drive 2966-Z-JPP, Iowa City, IA 52242 USA. Fax: +1319 384.9610.
    Affiliations
    University of Iowa Hospitals and Clinics, Department of Surgery, Division of Pediatric Surgery, Iowa City, IA, USA

    University of Iowa Carver College of Medicine, Program in Bioethics and Humanities, Iowa City, IA, USA
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  • Laura A. Shinkunas
    Affiliations
    University of Iowa Carver College of Medicine, Program in Bioethics and Humanities, Iowa City, IA, USA
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  • Maxwell T. Lieberman
    Affiliations
    University of Iowa, Department of Anthropology, Iowa City, IA, USA
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  • Richard M. Hoffman
    Affiliations
    University of Iowa Hospitals and Clinics, Iowa City, IA, USA
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  • Heather Schacht Reisinger
    Affiliations
    University of Iowa Carver College of Medicine, Program in Bioethics and Humanities, Iowa City, IA, USA

    University of Iowa Hospitals and Clinics, Iowa City, IA, USA

    Department of Internal Medicine, University of Iowa, Institute for Clinical and Translational Science, Iowa City, IA, USA
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Published:December 30, 2022DOI:https://doi.org/10.1016/j.jpedsurg.2022.12.029

      Summary

      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.

      Level of evidence

      III

      Keywords

      Abbreviations:

      COREQ ((Consolidated Criteria for Reporting Qualitative Research)), PTSD ((Post-Traumatic Stress Disorder)), QPL ((Question Prompt List))
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