Peer-reviewed article
Understanding the child-doctor relationship in research participation: a qualitative study
Malou L. Luchtenberg, Els L. M. Maeckelberghe, Louise Locock, Eduard A. A. Verhagen ·
Summary
Written by AI, not yet AICS's view · claude-haiku-4-5-20251001This study explored how children aged 9 to 18 in the UK and Netherlands perceive their relationship with doctors when deciding whether to participate in research. Children's willingness to take part depended strongly on trusting their doctors and feeling understood and supported by them. Trust and familiarity with research professionals enhanced children's confidence and made their research participation experience better, without making them feel forced to join studies.
Key points
- 52 children aged 9-18 were interviewed about their views on the child-doctor relationship in research participation
- Children's decision-making about research participation depended strongly on support from research professionals
- Familiarity and trust were important factors, related to children perceiving doctors as medically competent, supportive, and prioritizing their safety
- A trusting relationship led to feelings of mutuality and improved children's confidence throughout the research process
- No participants reported feeling compelled to participate, suggesting trust does not compromise voluntary consent
Limitations
This is a qualitative study based on children's self-reported perceptions, so it does not measure actual participation rates or quantify the impact of trust on recruitment. The study reflects contexts in the UK and Netherlands and may not generalize to other healthcare systems or countries.
Abstract
BACKGROUND: Children have reported that one reason for participating in research is to help their doctor. This is potentially harmful if associated with coercive consent but might be beneficial for recruitment. We aimed to explore children's perceptions of the child-doctor relationship in research. METHODS: This is a multicenter qualitative study with semi structured interviews performed between 2010 and 2011 (United Kingdom) and 2017-2019 (the Netherlands). Interviews took place nationwide at children's homes. We performed a secondary analysis of the two datasets, combining an amplified analysis aimed to enlarge our dataset, and a supplementary analysis, which is a more in-depth investigation of emergent themes that were not fully addressed in the original studies. All participants had been involved in decisions about research participation, either as healthy volunteers, or as patients. Recruitment was aimed for a purposive maximum variation sample, and continued until data saturation occurred. We have studied how children perceived the child-doctor relationship in research. Interviews were audiotaped or videotaped, transcribed verbatim, and thematically analyzed using Atlas.ti software. RESULTS: In total, 52 children were recruited aged 9 to 18, 29 in the United Kingdom and 23 in the Netherlands. Children's decision-making depended strongly on support by research professionals, both in giving consent and during participation. Often, their treating physician was involved in the research process. Familiarity and trust were important and related to the extent to which children thought doctors understood their situation, were medically competent, showed support and care, and gave priority to the individual child's safety. A trusting relationship led to a feeling of mutuality and enhanced children's confidence. This resulted in improving their experiences throughout the entire research process. None of the participants reported that they felt compelled to participate in the research. CONCLUSIONS: The child-doctor relationship in pediatric research should be characterized by familiarity and trust. This does not compromise children's voluntary decision but enhances children's confidence and might result in a feeling of mutuality. By addressing the participation of children as an iterative process during which treatment and research go hand in hand, the recruitment and participation of children in research can be improved.