Luchtenberg Malou L, Maeckelberghe Els L M, Locock Louise, Verhagen A A Eduard
University of Groningen, Groningen, the Netherlands.
Beatrix Children's Hospital, University Medical Center Groningen, Groningen, the Netherlands.
BMC Pediatr. 2020 Jul 24;20(1):353. doi: 10.1186/s12887-020-02243-1.
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.
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.
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.
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.
儿童表示参与研究的一个原因是帮助他们的医生。如果这与强迫同意相关联，可能会有害，但对招募工作可能有益。我们旨在探讨儿童对研究中儿童与医生关系的看法。
这是一项多中心定性研究，在2010年至2011年（英国）以及2017年至2019年（荷兰）进行了半结构化访谈。访谈在全国范围内儿童家中进行。我们对两个数据集进行了二次分析，结合了旨在扩大数据集的扩展分析和补充分析，补充分析是对原始研究中未充分探讨的新出现主题进行更深入的调查。所有参与者都曾参与过关于研究参与的决策，要么是作为健康志愿者，要么是作为患者。招募目标是一个有目的的最大差异样本，持续进行直到数据饱和。我们研究了儿童如何看待研究中的儿童与医生关系。访谈进行了录音或录像，逐字转录，并使用Atlas.ti软件进行主题分析。
总共招募了52名9至18岁的儿童，其中29名来自英国，23名来自荷兰。儿童的决策在很大程度上取决于研究专业人员在同意过程和参与过程中的支持。通常，他们的主治医生会参与研究过程。熟悉度和信任很重要，并且与儿童认为医生理解他们的情况、具备医疗能力、给予支持和关怀以及优先考虑儿童个体安全的程度相关。信任关系会带来一种相互的感觉并增强儿童的信心。这导致他们在整个研究过程中的体验得到改善。没有参与者报告他们感到被迫参与研究。
儿科研究中的儿童与医生关系应以熟悉度和信任为特征。这不会损害儿童的自愿决定，反而会增强儿童的信心，并可能带来一种相互的感觉。通过将儿童的参与视为一个治疗与研究并行的迭代过程，可以改善儿童参与研究的招募情况和参与度。
