Service user involvement in research : collaborating on a systematic review with young people who have experience of being in care

This study was conducted as an inquiry into the involvement of service users in research. It\ud was informed by theories of the social construction of science, which argue that knowledge\ud is dependent on those who frame, prioritise and conduct research. People with experiential\ud knowledge as opposed to those with professional training have traditionally been excluded\ud from these processes, although their experiences may differ considerably from the\ud professional judgement of it, resulting in research which is removed from the realities of\ud those whose lives it describes. This study was also informed by an argument that\ud involvement of people with experience in the field of investigation can highlight areas\ud neglected by previous research.\ud To investigate the nature of involvement and its potential, the study set up a collaborative\ud working group with young people who had all experienced being looked after by the state.\ud The young people were invited to be involved in setting the question for a systematic review\ud on a health-related topic, and to participate in all stages of the research. Qualitative data\ud was collected throughout this process, to inform a qualitative evaluation of the\ud collaboration between the researcher and the young people.\ud This thesis first provides an overview of the literature on involvement in research and a\ud description of the epistemological framework for the investigation. After presenting the\ud study design and data analysis methods of the study, it describes how the young people\ud were involved the research and presents the findings of the resulting systematic review.\ud Based on in-depth analysis of the qualitative data collected during the collaboration, it\ud considers the negative and positive impact of the involvement, on the review and on those\ud involved. Finally, it considers the quality of the systematic review and discusses how\ud consumer involvement may be optimised without compromising on the review quality