دورية أكاديمية
أعرض في EDS

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

التفاصيل البيبلوغرافية
العنوان: Perspectives of adolescents on decision making about participation in a biobank study: a pilot study.
المؤلفون: Grootens-Wiegers P; Department of Science Communication and Society, Leiden University, Leiden, The Netherlands.; Committee of Medical Ethics, Leiden University Medical Center, Leiden, The Netherlands., Visser EG; Department of Pediatrics, Division of Infectious Diseases and Immunology, Erasmus MC University Medical Center, Rotterdam, The Netherlands., van Rossum AMC; Department of Pediatrics, Division of Infectious Diseases and Immunology, Erasmus MC University Medical Center, Rotterdam, The Netherlands., van Waardhuizen CN; Theme Sophia, Sector Research Office-Theme Sophia Biobank, Erasmus MC University Medical Center, Rotterdam, The Netherlands.; Department of Epidemiology, Erasmus MC University Medical Center, Rotterdam, The Netherlands.; Department of Radiology, Erasmus MC University Medical Center, Rotterdam, The Netherlands., de Wildt SN; Intensive Care and Department of Pediatric Surgery, Erasmus MC University Medical Center, Leiden, The Netherlands.; Department of Pharmacology and Toxicology, Radboud University, Nijmegen, The Netherlands., Sweep B; Department of Science Communication and Society, Leiden University, Leiden, The Netherlands., van den Broek JM; Department of Science Communication and Society, Leiden University, Leiden, The Netherlands., de Vries MC; Departments of Pediatrics and Ethics and Health Law, Leiden University Medical Center, Nijmegen, The Netherlands.
المصدر: BMJ paediatrics open [BMJ Paediatr Open] 2017 Aug 23; Vol. 1 (1), pp. e000111. Date of Electronic Publication: 2017 Aug 23 (Print Publication: 2017).
نوع المنشور: Journal Article
اللغة: English
بيانات الدورية: Publisher: BMJ Publishing Group Country of Publication: England NLM ID: 101715309 Publication Model: eCollection Cited Medium: Internet ISSN: 2399-9772 (Electronic) Linking ISSN: 23999772 NLM ISO Abbreviation: BMJ Paediatr Open Subsets: PubMed not MEDLINE
أسماء مطبوعة: Original Publication: London : BMJ Publishing Group, [2017]-
مستخلص: 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.
Competing Interests: Competing interests: None declared.
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فهرسة مساهمة: Keywords: ethics; patient perspective; qualitative research
تواريخ الأحداث: Date Created: 20180412 Latest Revision: 20220317
رمز التحديث: 20231215
مُعرف محوري في PubMed: PMC5862224
DOI: 10.1136/bmjpo-2017-000111
PMID: 29637137
قاعدة البيانات: MEDLINE
الوصف
تدمد:2399-9772
DOI:10.1136/bmjpo-2017-000111