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Understanding the child-doctor relationship in research participation: a qualitative study
Malou L Luchtenberg1,2, Els L M Maeckelberghe3, Louise Locock4,5
1University of Groningen, Groningen, the Netherlands. m.l.luchtenberg@umcg.nl.
Insights
Children participating in research value a trusting relationship with their doctor, which enhances their confidence and improves their experience. This positive child-doctor relationship aids recruitment and participation in pediatric studies.
Area of Science:
- Pediatric Research
- Clinical Trials
- Child Psychology
Background:
- Children's motivation for research participation can stem from a desire to help their doctor.
- This can be beneficial for recruitment but poses risks if it leads to coercive consent.
- Understanding children's perceptions of the child-doctor relationship in research is crucial.
Purpose of the Study:
- To explore children's perceptions of the child-doctor relationship within the context of research participation.
- To investigate how this relationship influences children's decision-making and experiences in studies.
- To identify factors that foster trust and mutuality between children and doctors in research settings.
Main Methods:
- Multicenter qualitative study involving semi-structured interviews with children aged 9-18.
- Secondary analysis of datasets from the United Kingdom (2010-2011) and the Netherlands (2017-2019).
- Thematic analysis of transcribed interviews conducted at children's homes to understand their views on the child-doctor relationship in research.
Main Results:
- Children's decisions regarding research participation were significantly influenced by support from research professionals, including their treating physician.
- Key factors in the child-doctor relationship included familiarity, trust, perceived medical competence, and demonstrated care and prioritization of child safety.
- A trusting relationship fostered a sense of mutuality, boosted children's confidence, and improved their overall research experience, with no reports of feeling compelled to participate.
Conclusions:
- The child-doctor relationship in pediatric research should prioritize familiarity and trust to enhance children's confidence and sense of mutuality.
- This approach does not undermine voluntary decision-making but can improve recruitment and participation.
- Integrating research into the ongoing treatment process can strengthen the child-doctor relationship and benefit pediatric studies.
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.
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