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BMJ Paediatr Open. 2017 Aug 23;1(1):e000111. doi: 10.1136/bmjpo-2017-000111. eCollection 2017.

Perspectives of adolescents on decision making about participation in a biobank study: a pilot study.

Author information

1
Department of Science Communication and Society, Leiden University, Leiden, The Netherlands.
2
Committee of Medical Ethics, Leiden University Medical Center, Leiden, The Netherlands.
3
Department of Pediatrics, Division of Infectious Diseases and Immunology, Erasmus MC University Medical Center, Rotterdam, The Netherlands.
4
Theme Sophia, Sector Research Office-Theme Sophia Biobank, Erasmus MC University Medical Center, Rotterdam, The Netherlands.
5
Department of Epidemiology, Erasmus MC University Medical Center, Rotterdam, The Netherlands.
6
Department of Radiology, Erasmus MC University Medical Center, Rotterdam, The Netherlands.
7
Intensive Care and Department of Pediatric Surgery, Erasmus MC University Medical Center, Leiden, The Netherlands.
8
Department of Pharmacology and Toxicology, Radboud University, Nijmegen, The Netherlands.
9
Departments of Pediatrics and Ethics and Health Law, Leiden University Medical Center, Nijmegen, The Netherlands.

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.

KEYWORDS:

ethics; patient perspective; qualitative research

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