ArticleBMC medical ethics2019
Who should decide about children's and adolescents' participation in health research? The views of children and adults in rural Kenya.
Article in BMC medical ethics, 2019. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 22 papers, 4 of them syntheses that pooled it.
What it found
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The abstract states no effect estimate the extractor could read, or names no intervention and outcome on the map, so this paper lights no cell and moves no belief. It is still indexed, cited and linked below.
The trial behind it
Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.
Neither the registry nor the abstract names a trial number. If this is a trial report, that itself is worth knowing.
Who cites it
22 citing papers in PubMed, 4 syntheses or guidelines pooled it.
- Experiences and perspectives of children and adolescents participating in pediatric clinical trials: a qualitative evidence synthesis.Archives of public health = Archives belges de sante publique · 2026Pooled it
- A Direct Comparison, and Prioritisation, of the Immunotherapeutic Targets Expressed by Adult and Paediatric Acute Myeloid Leukaemia Cells: A Systematic Review and Meta-Analysis.International journal of molecular sciences · 2023Pooled it
- EMPATIA: A Guide for Communicating the Diagnosis of Neuromuscular Diseases.International journal of environmental research and public health · 2022Pooled it
- Informed consent approaches for clinical trial participation of infants with minor parents in sub-Saharan Africa: A systematic review.PloS one · 2020Pooled it
- Effect of menstruation on school attendance of girls along with water, sanitation, and hygiene services in Northwest Ethiopia.The Pan African medical journal · 2025Article
- Attitudes and awareness in autonomous decision on medical treatment or inclusion in clinical trials amongst Slovenian adolescents: an online survey.BMC medical education · 2024Article
- Balancing Ethics and Culture: A Scoping Review of Ethico-Cultural and Implementation Challenges of the Individual-Based Consent Model in African Research.Journal of empirical research on human research ethics : JERHRE · 2024Article
- Layered vulnerability and researchers' responsibilities: learning from research involving Kenyan adolescents living with perinatal HIV infection.BMC medical ethics · 2024Article
- Ethical guidelines for human research on children and adolescents: A narrative review study.Journal of research in medical sciences : the official journal of Isfahan University of Medical Sciences · 2024Review
- 'I feel that I should decide on my own….': who should be involved in the decision-making process for adolescent involvement in HIV research?BMJ global health · 2023Article
- Biobanking and consenting to research: a qualitative thematic analysis of young people's perspectives in the North East of England.BMC medical ethics · 2023Article
- Exploring attitudes to research involving human subjects among Vietnamese university students: establishing a prospective longitudinal mixed-methods student cohort at the University of Medicine and Pharmacy at Ho Chi Minh City.Wellcome open research · 2023Article
- "[T]he laws need to change to reflect current society": Insights from stakeholders involved in development, review or implementation of policies about adolescent consent for HIV testing, care and research in Kenya.Journal of the International AIDS Society · 2023Article
- "Other risks don't stop": adapting a youth sexual and reproductive health intervention in Zimbabwe during COVID-19.Sexual and reproductive health matters · 2022Article
- Researchers, authors and consent.Case reports in women's health · 2022Article
- Communicating the Spinal Muscular Atrophy diagnosis to children and the principle of autonomy.BMC pediatrics · 2022Article
- Effects of Menstrual Health and Hygiene on School Absenteeism and Drop-Out among Adolescent Girls in Rural Gambia.International journal of environmental research and public health · 2022Article
- Article
- Putting youth at the centre: co-design of a community-based intervention to improve HIV outcomes among youth in Zimbabwe.Wellcome open research · 2022Article
- Menstrual hygiene management practices and associated health outcomes among school-going adolescents in rural Gambia.PloS one · 2021Article
Corrections and comments
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Authors and funding
6 authors.
Funding
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.
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What OpenQuestion holds
Registered trials
Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the OpenQuestion graph.