Relational ethics, informed consent, and informed assent in participatory research with children with complex communication needs.

Abstract

There is a need for qualitative participatory research involving children with intellectual disability and complex communication needs (CCNs), but procedural ethics cannot always adequately respond to the associated realities. To tackle this challenge, procedural ethics can be expanded with relational ethics to engage with consent and assent practices in participatory research projects. By drawing on several key incidents of participatory research with children with CCNs, we explore the complex moral spaces and times of ambivalent and iterative (dis)engagements within research processes. We reconceptualize the consent/assent terrain as a relationally constituted process, more aligned with the overall epistemological frameworks of participatory research and ensuring (disabled) children's ongoing and meaningful involvement in research. WHAT THIS PAPER ADDS: Reconfiguring informed consent and assent is an ongoing and unfinished process. Both relational and procedural ethics are needed. Informed consent and assent represent an ongoing process, not a one-time event. Respect for research participants demands that they be included in the analysis of the data and writing of the results.