Abstract:
<h4>Background</h4>Routinely assessed outcomes in paediatric health studies may not reflect families' priorities. Increasing our understanding of childhood experiences of research participation may contribute to improving the quality of consent and better align study aims with the concerns of relevant communities.<h4>Objective</h4>To explore young adults' views on their participation in medical research during their childhood, specifically around the acceptability of consent and their priorities regarding health, development and well-being as potential trial outcomes.<h4>Methods</h4>A qualitative descriptive 20-year follow-up study of a medical trial which aimed to improve outcomes after preterm birth. Semistructured dialogue transcripts were analysed using inductive thematic analysis.<h4>Setting and participants</h4>Seventeen young adults whose parents consented to their participation in a clinical trial when they were fetuses, and in follow-up studies as preschoolers and school-age children.<h4>Results</h4>Overall, participants expressed comfort with their parents consenting to medical research on their behalf. However, autonomous child assent may not be attainable due to children's susceptibility to suggestions. Participants generally expressed satisfaction with the outcomes investigated in the follow-up studies, although some suggested other outcomes of interest such as mental health and learning disabilities.<h4>Conclusions</h4>Current consent procedures were deemed acceptable as parents hold responsibility for making decisions on behalf of their children, and their commitment to their child's well-being ensures that they make appropriate choices. The outcomes assessed in this trial and health and developmental outcomes in the follow-up assessments aligned well with outcomes of interest to the young adult participants.
