Vulnerability in Inclusive Research: Exploring Co- and Professional Researchers’ Experiences in a Community-Based Participatory Project on the Disability Family

Abstract

In the transition to a less protectionist research ethics paradigm—in which vulnerable groups are no longer excluded from participating in research—academic researchers need to think differently about vulnerability. By means of a collective autoethnographic investigation of professional and co-researcher’s experiences in a community-based participatory research (CBPR) project, this article explores how vulnerability is experienced and perceived in the work process and how to respond to vulnerability. It finds that vulnerability manifests in two main ways—that of feeling “emotional hurt” and “epistemic self-doubt”—and that it comes from two main layers: the lived life and from working within CBPR. The main argument in the article is that vulnerability is inevitable in qualitative research like CBPR, when involving persons in vulnerable life situations. We propose four key recommendations for future research: (a) accept vulnerability as an inevitable part of CBPR, (b) balance protection with participant autonomy in situ and together as a team, (c) use a processual approach because ethical risks in the research context might alter over time, and (d) accept that placing co-researchers at the center of interpretative authority can increase professional researcher’s vulnerability. The article expands existing understandings of ethical issues and risk in inclusive research through a combined and innovative focus on both professional and co-researcher’s lived experiences.