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

Carter, Bernie; Bray, Lucy; Satchwell, Candice and Simons, Joan (2015). Engaging with children in designing pain research: how to do it and is it worth the effort? Pain News, 13(2) pp. 121–124.

Abstract

Within the past 20 years there has been a considerable shift in the discourse that surrounds children within society and, more particularly, the legitimacy of their involvement in health research. Prior to this paradigm shift, research on children was seen as inherently too challenging or risky and children were viewed as ‘Other’, their perspectives irrelevant, their agency too limited and their voices marginalized (Lahman 2008, Carter 2009). Contemporary thinking about research with children lies within an emancipatory, rights-based, empowering paradigm. A whole raft of initiatives (e.g., GenerationR) and documents, including Turning the Tide (RCPCH, 2012), have underpinned the drive for children to be centre-stage and to have their care “assured by research” (Modi et al., 2014).
The main focus of our paper addresses two core questions relating to children’s engagement within the development of a research proposal on children’s pain literacy. The first question explores ‘how to engage children’ and since engagement takes time and resources, the second question we address is ‘is it worth the effort?’