Understanding adolescent organ and tissue donation decision-making using a qualitative descriptive design: A-DONOR study
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Abstract
The critical shortage of organ donors is a national health crisis. In the US, there is a discrepancy between favorable attitudes toward organ donation registration and willingness to donate organs. Though educational interventions increase knowledge and positive attitudes toward donation, this change does not always translate into registration. Current research has yet to qualify adolescent donation decision-making processes. The purpose of this qualitative descriptive study was to understand how adolescents make organ donation decisions, including facilitators and barriers. A purposive sample of 14 adolescents, registered organ donors (n=9) and non-organ donors (n=5), were recruited from a rural Pennsylvania high school. Participants were interviewed in-person or online and interviews were audio recorded. Audio recordings were transcribed by NVivo software and verified. Field notes were incorporated into transcripts for use during conventional content analysis. The age range was 16 to18 years-old with a mean age of 17.5 years old. Of the participants, 42.9% (n=6) were female, 57.1% (n=8) were male, and 92.69 % were white. The primary category for decision-making processes was I made the decision myself. Facilitators included I like helping people and I think I got influenced; conversations with parents were impactful and supported adolescents’ donation decisions. Barriers included I was in the moment, I forgot it [organ donation] was even a question, and I don’t think anyone talks about it [organ donation]; participants shared their confusion with the registration processes, including parental consent for minors. Comparable to the decision-making processes of living organ donors, adolescents in this study demonstrated decisional uncertainty and ownership of their donation decision. Similar to other studies, age was a barrier to becoming a donor while parental support was an important influence in their decision-making. Future implications include education for organ donation registration, collaborative education with parents and adolescents, and replication of this study with a more diverse sample. Policies which limit minors’ independent decision-making should be challenged as adolescents demonstrated decisional competence in their organ donation decisions. This study increased understanding of adolescents’ organ donation decision-making processes, facilitators, and barriers which may increase life-long donor registration, thus decreasing the organ donor shortage.
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Introduction -- Review of literature -- Methods -- Results -- Discussion
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Ph.D. (Doctor of Philosophy)