Doing Qualitative Participatory Research With Patients With Chronic Rare Diseases: Backstage Processes of Peer-Interviewing

Peer research is a participatory approach in which citizens are actively involved as peer researchers (PRs) in all aspects of the research project alongside academic researchers (ARs). In qualitative studies, “peer-interviewing” raises some specific issues. There has been little discussion disentangling these specificities of peer-interviewing, and few papers report the processual experience of patients engaged in qualitative research as peer-interviewers. This article presents the backstage processes of a qualitative study where twelve PRs from four European countries, who were patients or caregivers, interviewed patients living with rare liver diseases, to understand their perceptions of their well-being and needs. A meta-study was conducted simultaneously in the four countries by ARs using a common methodology to ensure consistency in the research process, offering a unique opportunity to analyze the processes of peer-interviewing in the context of chronic rare diseases. This article sheds light on five main backstage processes of peer-interviewing: 1) feeling empowered; 2) patchworking skills; 3) managing resonance; 4) navigating reciprocity; and 5) maintaining commitment. An important finding was that these themes were present across different PRs’ profiles, which varied in terms of age, gender, patient organization membership, and time elapsed since diagnosis. Although some of these processes have been identified in other research contexts, we highlight their unique characteristics within health research. We also underscore the shadow labor of the ARs in providing logistic, emotional and scientific support to PRs and highlight the importance of enhancing reflexive practices in qualitative peer research involving vulnerable populations such as patients.