410 - A Network of Exchange: towards Empowerment of Children in Medical Research

The UN convention of children’s rights state the right of children to express their opinion on all matters that concern them. It’s unclear how to balance protection and participation of children in medical research. To improve children’s participation and empower them, we need to learn their point of view.


Objective: To explore and evaluate children’s self-reported experiences to increase in-depth knowledge about their point of view on participating in medical research.

Design/Methods: Dissertation study consisting of qualitative research using 52 semi-structured interviews with children aged 9-18. Recruitment of the participants aimed at maximum variation sampling. Data collection aimed for saturation in the data. The interviews were transcribed verbatim by a professional company, coded by using Atlas.ti software and thematically analyzed following a grounded theory approach. Child co-researchers were involved in the analysis and provided feedback about their experiences.

Results: Children reported that they participate in research to help other children in the future, they hope for improvement of their own situation, and they want to help professionals such as their doctor. Trust and familiar relationships are important in making children feel open to consider participation, to improve their situation while participating and to being open for future participation. They expressed different needs related to their illness, research experience, information, and the support from others such as their parents and doctors. 

Conclusion(s): Based on children’s needs and wishes, the responsibilities of professionals should move beyond some of the the requirements formulated by law, e.g. single moment of informed consent and a strict division between research and care. A personalized approach is needed, that takes into account children’s diseases and research experiences, information needs, and the relationship with the research team, parents, and peers. We recommend considering children’s participation in research as an iterative process in which the relationships are fostered with the individuals they know. Tailored support can increase children’s knowledge, their capability, and confidence. It empowers them, creating a better balance between providing protection and enabling participation. We introduce the concept of a ‘network of exchange’ to describe the needs and wishes reported by children and their interactions with their doctors, the research team, parents, and peers (Figure 1). This ‘network of exchange’ is designed to empower children who participate in medical research, now and in the future.