• Jori Bogetz, Ellie Oslin, Emma Meissner, Amy Trowbridge, Jordan Anderson, Liz Morris, Krysta S Barton, Joyce Yi-Frazier, R Scott Watson, and Abby R Rosenberg.
• Division of Bioethics and Palliative Care, Department of Pediatrics, University of Washington School of Medicine; Treuman Katz Center for Pediatric Bioethics and Palliative Care, Center for Clinical and Translational Research, Seattle Children's Research Institute. Electronic address: jori.bogetz@seattlechildrens.org.
• J Pain Symptom Manage. 2024 Dec 13.

BackgroundParents of children with severe neurological impairment (SNI) face barriers in the pediatric intensive care unit (PICU) to humanistic care. Photo-narratives are a promising strategy to share perspectives about well-being. This study describes the iterative refinement and lessons learned in adapting a photo-narrative intervention for children with SNI in the PICU.MethodsThis qualitative study was conducted at an academic children's hospital. Participants included parents of children with SNI who completed the photo-narrative during interviews after their child's PICU discharge and provided feedback on intervention design, implementation, and impact. Parents then selected 1-3 of their child's PICU clinicians to participate. Data from sets of 5 parents and their corresponding clinicians were transcribed, de-identified, summarized using rapid qualitative analysis, and presented to our multidisciplinary study team who either accepted or dismissed changes. This cycle was repeated a total of 3 times with new participants to arrive at the final prototype.ResultsFifteen parents and 19 clinicians participated. Parents were a median of 39 years-old (range 28-55); 20% (n=3) were fathers. Over half (n=11) of clinicians had >5 years in their profession. Themes of refinement focused on: enhancing flexibility and ease for families; eliciting information to diminish disability-based biases; and streamlining integration in the PICU environment. Lessons learned included the ability of photos to share family perspectives on quality-of-life, contextualize the child's health status, and enhance child-clinician connection.ConclusionThemes and lessons learned from the successful adaptation and refinement of a photo-narrative can inform the other interventions designed to humanize care.Copyright © 2024. Published by Elsevier Inc.

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