Perspectives of adolescents on decision making about participation in a biobank study: a pilot study. Issue 1 (23rd August 2017)

• Record Type: Journal Article
• Authors: Grootens-Wiegers, Petronella; Visser, Eline G; van Rossum, Annemarie M C; van Waardhuizen, Claudia N; de Wildt, Saskia N; Sweep, Boudewijn; van den Broek, Jos M; de Vries, Martine C
• Is Part Of: BMJ paediatrics open. Volume 1:Issue 1(2017)
• Publication Date: 2017-08-23
• Subjects: patient perspective -- ethics -- qualitative research; Pediatrics -- Periodicals; Children -- Health and hygiene -- Periodicals; 618.920005
• DOI: 10.1136/bmjpo-2017-000111
• Languages: English
• ISSNs: 2399-9772

Abstract

Abstract : Objectives: To be able to truly involve adolescents in decision making about clinical research participation, we need more insight in the perspective of adolescents themselves. To this end, adolescents in an ongoing biobank study were consulted to test a tentative decision assessment tool. Methods: The perspectives of adolescents (n=8) concerning participation in decision making for research participation were explored in interviews with a tentative tool, which covered six topics: information material usage, understanding, disease perceptions, anxiety, decision-making process and role sharing. Results: All adolescents unequivocally expressed the desire to be involved in decision making, but also wanted advice from their parents. The extent of the preferred role of adolescent versus parents varied between individuals. In decision making, adolescents relied on parents for information. More than half hardly used the information material. Conclusions: Adolescents in our study preferred a shared decision-making process. The extent of sharing varied between individuals. The decision assessment tool was a fruitful starting point to discuss adolescents' perspectives and may aid in tailoring the situation to the individual to achieve optimal participation practices. Implications: Consulting adolescents about their preferences concerning decision making using the tool will facilitate tailoring of the shared decision-making process and optimising the developing autonomy of minors.