Challenging Research: Completing Participatory Social Research with Children and Adolescents in a Hospital Setting

Abstract

OBJECTIVE: A discussion of the challenges to completing participatory social research with children and adolescents in a hospital setting. BACKGROUND: Beginning with the dominant medical culture of hospitals, coupled with a persistent skepticism of social and in particular qualitative research and its contribution to knowledge in medical circles, restrictive contextual challenges also include attitudinal, methodological, and logistical considerations. Together, these challenges hamper good participatory research practice and the capacity to maintain quality data, as well as impede children's participation in research, which has the capacity to contribute to healthcare design, policy, and planning processes. METHODS: Two studies in pediatric settings in Australia, one of which was completed in 2008 and the other which was discontinued in 2011, provide the basis for this research discussion. The discussion addresses the issues that persist in inhibiting the completion of participatory social research and the resulting impacts on research, children's right to participate, and the volume of evidence that is ultimately available from children's perspectives to support and inform healthcare design, planning, and policy in pediatric settings. CONCLUSIONS: Recommendations for changes that could strengthen and improve this research experience include building awareness of the potential value of this research; increasing its influence; building the capacity and knowledge of gatekeepers, ethics committees, and researchers working in this context; and recognizing and valuing children's competence and participation.