Luchtenberg, M.L. (Malou Lisanne) (2014) Young people’s experiences of participation in clinical trials. thesis, Medicine.
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Abstract
Due to a lack of knowledge about safety and efficacy of many treatments for children, paediatric clinical trials are of utmost importance. Recruitment for paediatric research is difficult because children are vulnerable and highly protected by law. Little is known about children’s perspective on taking part in clinical trials. The aim of this study was to improve our understanding of young people’s experiences of participation in clinical trials. Young people’s reasons for participating, their experiences of involvement in the process of informed consent, and their perception of risks and burden was studied. A qualitative interview study of 25 young people aged 10-23 invited to take part in clinical trials was performed. Interviews were audio or video recorded and analysed using framework analysis. Young people were motivated to take part for reasons of personal benefit as well as helping others. Both incentives appeared to be much more complex than expected. Helping others was associated with a form of reciprocity. We introduced the terms ‘network of exchange’ and ‘intergenerational solidarity’ to describe these motivations of helping others. Being involved in the process of informed consent was very important for our participants. Their perception of risks and burden was suboptimal. In order to improve recruitment, it is of great importance that professionals are more open about research opportunities, provide more complete information, and give young people feedback after the trial has ended.
| Item Type: | Thesis (Thesis) |
|---|---|
| Supervisor name: | Maeckelberghe, Dr. E.L.M. |
| Faculty: | Medical Sciences |
| Date Deposited: | 25 Jun 2020 11:08 |
| Last Modified: | 25 Jun 2020 11:08 |
| URI: | https://umcg.studenttheses.ub.rug.nl/id/eprint/2732 |
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