Involving Children in Health and Social Research

Abstract

This article draws on the authors’ experiences of undertaking health and social research involving children in Australia and England and focuses on securing the informed consent of children to participate in such research. A clear trend within literature, service provision, legislation and international conventions recognizes children as ‘active beings’ in all aspects of their lives. The services that are the focus of the research and evaluation projects in which the authors have been involved sought to empower children as active agents and decision-makers. Crucially, not only were these services available directly to children without requiring parental permission, but many children were also accessing these services without their parents’ knowledge. However, when it came to researching and evaluating users’ experiences of these services, the authors faced the problem that existing research gatekeeping systems tended to construct children as dependent, in need of protection and as ‘human becomings’. The authors found that research ethics committees would permit the research to take place only if both the child’s informed consent and that of his or her parents was obtained. The authors outline the implications of such dilemmas, which may not only be counter productive in terms of research objectives but also risk failing to afford children rightful regard in contemporary society. While the authors conclude that there are no quick fixes to the resolution of such dilemmas, they believe that researchers need to engage with the gatekeepers of research to ensure that the laudable effort to protect potentially vulnerable participants avoids overprotection, paternalism and the further disenfranchisement of already marginalized young people.

Involving young people as researchers: uncovering multiple power relations among youths

“…The specific implications for doing participatory research on and with young people is that access to them is often highly regulated through adult-gatekeepers (Balen et al 2006;Harden et al 2000;Matthews et al 1998b) which means that issues of inclusion and representation need to be considered (even more) carefully. However, the need to acknowledge participation as a form of power and to work with these is not unique of the study of youth and childhood.…”

Risk, Welfare and the Treatment of Adolescent Cannabis Users in England

“…Nevertheless, it is argued that gathering interview data from both service deliverers and service users offers a unique perspective from which to attempt to 'understand' young people's drug treatment. This is particularly so given the general scholarly reluctance to interview adolescents and children due to ethical concerns, and difficulties gaining ethical approval (on this subject, see, for example, Balen et al 2006). Indeed, the relatively small sample size was in part a product of the protection concerns of gatekeepers.…”

National Human Research Ethics: A Preliminary Comparative Case Study of Germany, Great Britain, Romania, and Sweden

“…Many IRBs exhibit a special concern over vulnerable groups, but there is variation between them as to who is defined as vulnerable, the level of attention they receive, and the reason for this attention (L. London, 2002). HIC's IRBs tend to be more concerned with child participants (Balen et al, 2006), whereas their LMIC's counterparts are more anxious over participants who are in poverty or poor health (Nyika et al, 2009). …”