Why collaborate with children in health research: an analysis of the risks and benefits of collaboration with children

Abstract

Involvement of service users in decision making, in both clinical and research settings, has become a central feature of many health and research funding policies in the last 15 years. Over the same timeframe, there has been an increasing focus on children's rights, promoted by the UN Convention of the Rights of the Child, which gives children a right to be involved in decisions that affect their lives. In a research setting, this has resulted in increased engagement of children in research, as opposed to relying on parents or carers to represent their children, and a shift from research on children to research with children. In this article, we discuss collaboration with children under the age of 16 years in health research: what this means and why (or why not) to do it. The definition of collaboration is discussed and the lines among collaboration, involvement, participation and participatory research considered. The risks and benefits of collaboration are reviewed, both theoretical and evidence based, where evidence exists. The review ends with a look towards the future including the need for agreed definitions, better reporting of collaboration and other patient and public involvement activities with children to build up the much needed evidence base, the need for cost-benefit evaluations and, most importantly, the need for careful consideration as to whether collaborating with children is appropriate in each circumstance.

Involving young people in drug and alcohol research

“…The understanding that children and young people should be involved in decisions which affect them has been increasingly reflected in UK law, guidance, regulation and policy in relation to health and social care (Department of Health, 2013;Franklin and Sloper, 2005). But there has been less attention paid to the experiences and impact of involving children and young people than the involvement of adults (Bird et al, 2013). Involvement should lead to research, and ultimately services, that better reflect young people's priorities and concerns (Brady et al, 2012;Fleming and Boeck, 2012).…”

Participatory methods in pediatric participatory research: a systematic review

“…As Bird et al (6) already concluded, reporting of participatory research with children must improve, for example by using the Guidance for Reporting Involvement of Patients and Public (GRIPP) checklist (30), in order to be able to assess successful and unsuccessful methodologies (4). When this has been done a few times for each participatory method, comparative studies into the differences and similarities and pros and cons can be executed properly.…”

“…Seven narrative reviews of child involvement in social sciences and four reviews of child participation in medical research were identified; one of these reviews is a systematic review. The reviews are predominantly focused on necessity of participatory research (8), ethics (3,9,10), risks and benefits (6), and practicalities such as inclusion or dissent (2,9,11-13) ( Table 2). None of the reviews extensively described participatory methods for pediatric medical research.…”

“…Other reported benefits are based on experiences of children and researchers: participatory research is a positive experience for both children and researchers (10). Benefits for the children are their increased empowerment (9), self-confidence, and self-esteem (6,10). Also knowing that their views and opinions are listened to and respected and that they can make a difference or help other children and in getting the opportunity to share frustrations and appreciations were reported as beneficial effects of participatory research (12).…”

“…Aims and benefits (6), and several participatory methods for children have been described; however, evidence regarding the effects of using different participatory methods is not presented. This hampers the proper use of different participatory methods for two reasons.…”