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Who should decide about children's and adolescents' participation in health research? The views of children and adults in rural Kenya.

ABSTRACT: BACKGROUND: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. 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. METHODS:Between 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. RESULTS:Across 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. CONCLUSIONS:Moves 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.

SUBMITTER: Marsh V

PROVIDER: S-EPMC6570858 | biostudies-other | 2019 Jun

REPOSITORIES: biostudies-other

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Who should decide about children's and adolescents' participation in health research? The views of children and adults in rural Kenya.

Marsh Vicki V Mwangome Nancy N Jao Irene I Wright Katharine K Molyneux Sassy S Davies Alun A

BMC medical ethics 20190614 1

<h4>Background</h4>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. 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 ...[more]

PMID: 31200697

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Project description:Importance:The 2016 US presidential election brought national visibility to prominent economic issues affecting rural America, yet little has been done to examine serious health or economic problems in rural communities from the perspectives of rural US adults themselves. Objective:To examine views on the most serious health and economic concerns and potential solutions in rural communities. Design, Setting, and Participants:This survey study used 2 cross-sectional probability-based telephone (cellular and landline) surveys of adults living in the rural United States. The first survey was conducted June 6 to August 4, 2018, and the second survey was conducted January 31 to March 2, 2019. All results were weighted to be nationally representative of rural US adults. Data analysis was conducted in April 2019. Main Outcomes and Measures:The primary study outcomes were the prevalence of rural adults reporting their biggest community problems, problems with health care access and costs, ratings of the local economy, views on opioid addiction, and views on solving major community issues. Results:The 2018 survey included 1300 respondents (response rate, 12%; completion rate, 70%), and the 2019 survey included 1405 respondents (response rate, 8%; completion rate, 76%). Rural adults primarily identified as non-Hispanic white (78%), and more than half of respondents were 50 years or older (survey 1: 55%, survey 2: 53%). Rural adults identified opioid or other drug addiction or abuse (25%; 95% CI, 22%-28%) and economic concerns (21%; 95% CI, 19%-24%) as the most serious problems facing their local communities. Opioid or other drug addiction or abuse was reported as a serious problem in their local community by 57% (95% CI, 53%-60%) of rural adults, while 49% (95% CI, 46%-53%) of rural adults said they personally know someone who has had opioid addiction. Problems paying medical bills were reported by 32% (95% CI, 29%-36%) of rural adults, and recent issues with accessing health care were reported by 26% (95% CI, 23%-30%) of rural adults. Regarding financial and economic issues, 55% (95% CI, 52%-59%) of rural adults rated their local economy as only fair or poor, and 49% (95% CI, 44%-54%) of rural adults said they would have difficulty paying off an unexpected $1000 expense. On solving major community problems, 58% (95% CI, 54%-62%) of rural adults saw a need for outside help to solve major community problems, and among those who reported needing outside help, 61% (95% CI, 57%-66%) identified a major role for government. Conclusions and Relevance:These findings suggest that in today's economically stretched rural United States, opioid or other drug addiction or abuse has emerged as an equal problem with economic concerns. One in 3 rural adults still have problems paying their medical bills even after the passage and implementation of the Patient Protection and Affordable Care Act. Although rural communities have traditionally been self-reliant, more than half of rural adults are open to outside help to solve serious problems facing their communities, including major help from government.

Project description:BackgroundAn inability to successfully recruit participants into clinical research has consequences that negatively affect the conduct and reliability of research studies. Understanding facilitators of research participation, namely motives for participation and preferred research outcomes, may improve recruitment and retention of clinical trials related to chronic pain. The present study explored research participation facilitators among individuals with chronic pain and their association with demographic characteristics, pain-related characteristics, and factors related to future research engagement.MethodsIndividuals from Michigan who were 18 years or older and self-reported having chronic pain completed an online survey assessing motives for research participation and desired research outcomes. Analyses were conducted in three stages. First, we evaluated underlying factors of motives for participation and research outcome preferences using principal components analysis. Second, we classified individuals according to their patterns of facilitators using latent profile analysis. Finally, we evaluated differences between facilitator profiles in demographic characteristics, pain-related characteristics, and factors related to future research engagement using χ2 analyses and Kruskal-Wallis rank sum tests.ResultsThree components of motives for research participation were identified: social engagement/enjoyment; pain improvement/advancing science; and compensation. Three components of research outcome preferences were identified: co-occurring symptom reduction; behavior reduction modification; and pain and function improvement. Four potential patient-centered profiles utilizing these dimensions of facilitators were identified that had unique demographic characteristics, research participation willingness, and treatment interest.ConclusionsOur data provide a framework of motives and research outcome preferences that may inform recruitment and retention in chronic pain research. It also gives an indication of who may respond best to active or passive recruitment strategies that appeal to a given motive or preferred outcome. This information may be useful for improving recruitment and to monitor any potential biases in participant samples.

Dataset Information

Who should decide about children's and adolescents' participation in health research? The views of children and adults in rural Kenya.

Publications

Who should decide about children's and adolescents' participation in health research? The views of children and adults in rural Kenya.

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