Cadre éthique et innovation méthodologique : chercher avec des personnes en situation de maladie auto-immune rare

Abstract

The issues related to chronic disease involve the implementation of comprehensive innovative research to update and report on the sensitive experience of patients. The research concerned by this contribution, included in the perspective of biographical research in education, aimed in particular, by relying on their subjectivity (Thievenaz J., & Tourette-Turgis, C., 2015), to identify and characterize the handicaps and the resources of patients with rare autoimmune systemic diseases. The aim was to improve their care and broaden the offerings in terms of therapeutic education. It was based on the narration of the experiences of patients, through a collaborative e-platform considered as favorable to the sharing and co-construction of knowledge. The methodological choices and their evolutions will be reported over the course of the research in an attempt to move towards a sensitive and respectful understanding and restitution of the participants’ experience.

Keywords

• chronic disease
• methodology
• power to act
• co-construction of knowledge