Authors: Giada Danesi, Guenda Bernegger, Lynda Sifer-Rivière, Isabelle Aujoulat, Anouck Alary, Eva Gil-Hernández, Mercedes Guilabert, Pura Ballester, José Joaquín Mira Solves, Jane Sattoe, Maria Caiata Zufferey, Agnes Dumas
Journal: International Journal of Qualitative Methods • 2026
Overview
This article presents the participatory approach used in the qualitative study of the LIVES project. Twelve peer researchers, who were patients living with rare vascular liver diseases or caregivers, from four European countries (France, Spain, Switzerland, and the Netherlands), were trained to conduct in-depth interviews with patients. The study explores the experiences of these peer researchers throughout the research process.
Key findings
The study found that peer researchers’ shared experience of living with, or caring for someone with, a rare vascular liver disease helped create trust and openness during interviews with participants. At the same time, conducting interviews with people facing similar challenges could be emotionally demanding and required peer researchers to balance empathy with their role as researchers. The findings also show that becoming a peer researcher is an ongoing process that involves developing research skills, reflecting on the interview experience, and receiving continuous support from the research team.
The findings highlight both the opportunities and the challenges of involving patients and caregivers as active partners in qualitative health research and underline the importance of providing appropriate training, supervision, and emotional support throughout the research process.