Enriching our understanding of vulnerability through the experiences and perspectives of individuals living with mental illness. (3rd October 2019)

• Record Type: Journal Article
• Authors: Lajoie, Corinne; Fortin, Justine; Racine, Eric
• Is Part Of: Accountability in research. Volume 26:Number 7(2019)
• Page Start: 439
• Page End: 459
• Publication Date: 2019-10-03
• Subjects: Vulnerability -- research ethics -- mental illness -- mental health research -- phenomenology; Research -- Evaluation -- Periodicals; Research -- Methodology -- Periodicals; Research -- Management -- Periodicals; 001.4
• DOI: 10.1080/08989621.2019.1679121
• Languages: English
• ISSNs: 0898-9621

Abstract

ABSTRACT: Vulnerability is a central concept in research ethics and typically serves to identify individuals or groups whose participation in research prompts specific concerns or warrants special consideration. While theoretical discussions on vulnerability have contributed valuable insights to discussions of mental health research and care, they have not been enriched thus far by stakeholder perspectives. This oversight has important consequences for the ways in which we frame vulnerability. It misses the far-reaching insights and experiential knowledge of mental health research participants whose experiences this ethics concept ultimately seeks to capture. In view of this gap, our study combines a pragmatist ethics framework and interpretive phenomenological analysis of qualitative interviews to explore user perspectives on the notion of vulnerability through the lived experiences of mental health research participants and patient-advocates. Importantly, these perspectives offer essential clues to address the difficulties of operationalizing concerns for vulnerability in concrete and practical ways. They help refine our understanding of this key ethics concept.