Perspectives of adult offspring of participants recruited to a randomised trial in pregnancy: a qualitative study

• Published in: Archives of disease in childhood Vol. 109; no. 3; pp. 209 - 214
• Main Authors: Franke, Nike, Wouldes, Trecia Ann, Brown, Gavin Thomas Lumsden, Ward, Kim, Rogers, Jenny, Harding, Jane E
• Format: Journal Article
• Language: English
• Published: England BMJ Publishing Group Ltd and Royal College of Paediatrics and Child Health 01.03.2024; BMJ Publishing Group LTD
• Subjects: child health; Children; Children & youth; Coding; Consent; Data analysis; Decision making; ethics; Females; Fetuses; Focus groups; Followup Studies; Human subjects; Males; Medical ethics; Medical research; Offspring; Original research; Participation; Pediatrics; Preferences; Pregnancy; Premature birth; Premature Infants; Public interest; Qualitative research; Recruitment; Reflection; Respiratory diseases; Steroids; Transcripts (Written Records); Twins; Video Technology; Video teleconferencing; Well being; Young adults; New Zealand; ethics; child health; qualitative research
• ISSN: 0003-9888; 1468-2044; 1468-2044
• DOI: 10.1136/archdischild-2023-326017

BackgroundRoutinely 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.ObjectiveTo 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.MethodsA 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.Setting and participantsSeventeen 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.ResultsOverall, 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.ConclusionsCurrent 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.