Engaging with children in designing pain research: how to do it and is it worth the effort?

Background and aim Although many studies still either do not engage service users or only do so in a tokenistic way, service user engagement is now seen as best practice within research design. Not only is it respectful to engage service users, but it can also identify potential barriers, explore solutions and generate more robust research. In this paper we explore our experience of working with child service users as we developed a study exploring children’s pain literacy. Methods Using Appreciative Inquiry we worked with 38 children (5–17 years) in schools, hospitals and home settings. During our consultations with the children we explored the feasibility of the methods we were considering for data collection, asked them for suggestions of alternative approaches and explored core aspects of the observation element. Results The children enjoyed the use of the collage-based data generation activities we planned. In response to our questions about whether they thought other children would feel safe talking about their pain; they felt that such would work best on a one-to-one basis or in small groups. They provided feedback on where we should position ourselves in ward settings whilst undertaking non-participant observation of children during the post-operative period. They made practical suggestions about how children could assent and withdraw from the study. Conclusions From our experience our consultations were invaluable and worth the effort; our final design was more robust and grounded in the children’s realities.