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Article History

Accepted: 10 July 2024

First Online: 29 July 2024

Declarations

:

: The authors have no competing interests or conflicts to disclose.

: This study received approval from the Yale Institutional Review Board (2000033621), with expedited review given the inclusion of minors. The IRB additionally granted a waiver of written consent, a waiver permitting access to and use of protected health information (PHI) for recruitment, and a waiver permitting verbal authorization for use of PHI for the entire study.

: Verbal consent was obtained for all adult participants; verbal assent was obtained for all minor participants. Written informed consent for participation was waived for this study, although authors did collect written consent from parents to contact additional members of the child’s care team, i.e., hospital staff and school staff. During the consent process, participants were advised of potential risks to participant comfort (i.e., emotional distress from discussing sensitive or upsetting experiences) and confidentiality (i.e., possibility of breach of data privacy). Participants were informed that participation was optional and could be terminated at any time without negative consequence to the participant, and that all interview questions were optional. The interview guide was flexibly adapted in each interview to participant comfort or desire to elaborate on certain topics. To protect confidentiality, all recruitment and audio files were stored on a university-approved, HIPAA-compliant file storage platform, along with de-identified transcripts; video files were deleted and not utilized for analysis. To further protect confidentiality, all audio files were manually transcribed and de-identified.