‘A No‐Brainer, but Not a Simple Decision’: A Qualitative Study of Patient Experiences of Tissue Donation for Research in Rare Craniospinal Tumour Pathways

Le résumé fourni par la source

BACKGROUND: Tissue donation is central to rare tumour research, yet consent is often sought when patients are managing diagnosis, major surgery and uncertainty. Little is known about how people with rare craniospinal tumours experience tissue-donation consent or what support they consider useful. OBJECTIVE: To explore patient experiences of tissue-donation consent in rare craniospinal tumour pathways and identify implications for patient-centred, staged and relational consent support. DESIGN: Qualitative interview study following a national online survey. SETTING AND PARTICIPANTS: Eight adults from a self-selected volunteer subsample of respondents to a preceding national survey completed online semi-structured interviews using a survey-informed interview guide. All 50 survey respondents were invited to volunteer for interview; 13 expressed interest, 8 ultimately provided informed consent, and all 8 were interviewed. No further participant selection was undertaken by the research team. RESULTS: Four themes were generated beneath the overarching analytic thread of making sense of tissue donation across the rare tumour pathway: tissue donation as something good coming from something bad; tissue donation during shock and overload; making sense of tissue donation over time; and trust and support around tissue donation. Participants described the need for trusted information support that extended beyond leaflets while complementing clinician-led discussion. CONCLUSIONS: Within this small, self-selected volunteer sample, participants' accounts suggest that tissue-donation consent may be better supported as a staged, relational and revisitable process rather than treated as a single procedural event. LIVED EXPERIENCE OR PUBLIC CONTRIBUTION: People with lived experience informed survey development and testing. Interview participants contributed detailed accounts that shaped the consent-support implications presented in this manuscript.

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