La participation des enfants dans la recherche est encouragée par les recommandations internationales spécifiques aux enfants et/ou à la réglementation de la recherche. Dans les études sur le VIH pédi
Caroline Desclaux Sall, researcher at TransVIHMI (Institut de Recherche pour le Développement).
Thesis defended in 2016 at the doctoral school École doctorale Sciences Chimiques et Biologiques pour la Santé (Montpellier ; 1992-....).
This research is the result of an international co-supervision between several partner institutions.
Referenced in the ABES/STAR network, this thesis meets the rigorous criteria of French higher education.
Research on pediatric HIV raises complex ethical questions, especially when it comes to involving children. This thesis by Caroline Desclaux Sall, conducted in collaboration with the Institut de Recherche pour le Développement and INSERM, highlights the challenges faced in Senegal. Indeed, although the participation of children is encouraged by international recommendations, their involvement remains limited by various obstacles, often related to specific cultural and social contexts.
The study's results show that only 29% of children attended an information session on research, despite a positive perception of their participation. This raises questions about how information is conveyed and how children understand the stakes of research. For example, in some cultures, children may be perceived as passive subjects rather than active participants, which can influence their engagement. Family relationships and caregiver support play a crucial role in this dynamic, as a supportive family environment can encourage children to become more involved.
Surveys conducted between 2013 and 2015 reveal heterogeneity in children's participation practices in research. In some regions of Senegal, local initiatives have been established to raise awareness among families and children about the importance of HIV research. However, these efforts are not uniform and often depend on available resources and the willingness of local actors. Ethics committees, although varied in their requirements, must agree on clear and appropriate protocols. This involves collective reflection on the best practices to adopt to ensure that children's rights are respected while facilitating their participation.
The results indicate that children need gradual and accessible information to better understand their role in research. This raises the question of the responsibility of researchers and institutions in establishing appropriate information mechanisms. For example, visual aids, role-playing, or interactive workshops could be effective means of conveying complex information in a playful and engaging manner.
It is essential to think about concrete solutions to improve children's participation in HIV studies. This could involve training for researchers on communication with children, to raise awareness of the importance of adopting clear and appropriate language. Additionally, initiatives aimed at strengthening family support, such as discussion groups or information sessions, could also play a key role in encouraging children's participation.
Ultimately, research must be an inclusive process, where children's voices are heard and respected. The recommendations arising from this thesis could serve as a basis for adapting ethical procedures in other countries in the Global South, thus promoting more ethical and responsible research. In West Africa, where HIV remains a major public health issue, it is crucial to ensure that children, who are often the most vulnerable, are integrated into the research processes that concern them.
Thus, it is imperative to create an ethical framework that not only respects children's rights but also values their contribution. This could also have positive repercussions on the perception of research within communities, strengthening trust between researchers and participants. Ultimately, an ethical and inclusive approach could not only improve the quality of the data collected but also contribute to more effective interventions tailored to the needs of children living with HIV.
Key Facts
- 29% : Percentage of children who participated in the information session on research.
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Sources and Access
Caroline Desclaux Sall. Accompagner les enfants dans la recherche : enjeux éthiques et sociaux dans une cohorte VIH au Sénégal. Médecine humaine et pathologie. Université Montpellier, 2016. Français. ⟨NNT : 2016MONTT034⟩. ⟨tel-01499540⟩