Children's participation in health research: from objects to agents?

Abstract

Background: In the UK, there is a growing recognition of the need to include children's accounts in research on paediatric health care. This paper seeks to examine ways in which children have been included in health-related studies to identify strengths and weaknesses.

Methods: Key empirical based studies were identified via comprehensive searches of academic literature databases to exemplify research practices related to three ways of engaging with children in health-related research. These three approaches are summarized as research on children, with children and by children.

Results: Research on children engages with adult 'authorities', such as parents and medical professionals. This approach allows some access to children including those understood as hard-to-reach: for example, pre-speech infants, or children with complex developmental disabilities. Research with children includes children as respondents to engage directly with their own understandings. This may be achieved alongside adult representatives, or by focusing only on the children themselves. Research by children encourages children to participate in the research process itself. This may occur across any, or indeed, every stage from design to dissemination to enable children to set the agenda themselves. Each of the three approaches has strengths and weaknesses, and involves some form of adult-mediation.

Conclusion: Inclusion of children's perspectives can be achieved, at varying levels, in each approach (on, with and by) examined here. Although claims to authority around including children's perspectives may appear to hold more credence when children have directly participated in the research, there may be times when this is neither possible nor appropriate. Researchers are challenged to be open and reflexive about ways in which children are engaged with, incorporated in and represented across the many stages of research. Whichever approach is taken, ethical issues and notions of equity remain problematic. This point holds particular resonance for ways in which ethics around children may be considered in National Health Service ethics governance processes.