Abstract
BackgroundInternational research guidance has shifted towards an increasingly proactive inclusion of children and adolescents in health research in recognition of the need for more evidence-based treatment. Strong calls have been made for the active involvement of children and adolescents in developing research proposals and policies, including in decision-making about research participation. Much evidence and debate on this topic has focused on high-income settings, while the greatest health burdens and research gaps occur in low-middle income countries, highlighting the need to take account of voices from more diverse contexts.MethodsBetween January and March 2014, 56 community representatives and secondary school students were involved in eight group discussions to explore views on the acceptability of involving children and adolescents in research, and how these groups should be involved in decision-making about their own participation. Discussions were voice-recorded and transcriptions analyzed using Framework Analysis, combining deductive and inductive approaches.ResultsAcross these discussions, the idea of involving children and adolescents in decision-making about research participation was strongly supported given similar levels of responsibility carried in everyday life; existing capacity that should be recognized; the opportunity for learning involved; varying levels of parental control; and generational shifts towards greater understanding of science for adolescents than their parents. Joint decision-making processes were supported for older children and adolescents, with parental control influenced by perceptions of the risks involved in participation.ConclusionsMoves towards more active involvement of children and adolescents in planning studies and in making decisions about their participation are supported by these findings from Kenya. Important emerging considerations include the need to take account of the nature of proposed studies and prevailing attitudes and understanding of research in identifying children’s and adolescents’ roles. More research is needed to expand diversity and develop approaches to joint assent and consent processes that would fairly represent children’s and adolescents’ wishes and interests, towards their long term benefit.
Highlights
International research guidance has shifted towards an increasingly proactive inclusion of children and adolescents in health research in recognition of the need for more evidence-based treatment
While the whole dataset covered a broader range of topics, as shown by the topic guides, in this paper we focus on describing our findings on perceptions of the role of children and adolescents in making decisions about their own participation in health research
An influence from the perceived implications of research participation For Kenya Medical Research Institute (KEMRI) Community Representative (KCR) and students, views on how much control children and adolescents should have in research decision-making were linked to perceptions about their levels of maturity and ability to make ‘good decisions’
Summary
International research guidance has shifted towards an increasingly proactive inclusion of children and adolescents in health research in recognition of the need for more evidence-based treatment. Attitudes have shifted towards recognizing the critical importance of research involving children and adolescents, underpinned by evidence of high levels of unlicensed or ‘off-label’ medications currently in use in these age groups [1, 2]. Young Persons’ Advisory Groups (YPAGs) have gained popular support, in high resource settings, as a means of incorporating age-specific input into research planning, including consent processes [6]. Such a group was set up at a research programme in Cambodia, suggesting a wider acceptance of this role for children and adolescents [7, 8]. While seeking informed consent from only parents or guardians is generally regarded as unacceptable, for older children and adolescents, the exact processes by which they should be involved in decision-making remain a subject of debate
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