Perspectives of adolescents on decision making about participation in a biobank study: a pilot study
| Autor: | Eline G. Visser, Boudewijn Sweep, Annemarie M. C. van Rossum, Jos M. van den Broek, Saskia N. de Wildt, Petronella Grootens-Wiegers, Martine C. de Vries, Claudia N. van Waardhuizen |
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| Jazyk: | angličtina |
| Rok vydání: | 2017 |
| Předmět: |
Process (engineering)
media_common.quotation_subject GeneralLiterature_MISCELLANEOUS 03 medical and health sciences 0302 clinical medicine 030225 pediatrics Perception medicine ComputingMilieux_COMPUTERSANDEDUCATION 030212 general & internal medicine media_common Medical education Perspective (graphical) patient perspective Biobank ethics Test (assessment) Pediatrics Perinatology and Child Health Anxiety Original Article medicine.symptom Psychology Autonomy qualitative research Qualitative research |
| Zdroj: | BMJ Paediatrics Open |
| ISSN: | 2399-9772 |
| Popis: | 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. |
| Databáze: | OpenAIRE |
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