Enriching our understanding of vulnerability through the experiences and perspectives of individuals living with mental illness

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.

KEYWORDS:

• Vulnerability
• research ethics
• mental illness
• mental health research
• phenomenology

Acknowledgments

We would like to thank the members of the Pragmatic Health Ethics Research Unit for their feedback in the development of this work, as well as all of our research participants for their openness and generosity in sharing their experiences with us.

Disclosure statement

No potential conflict of interest was reported by the authors.

Notes

1. As we mention later in the methodology section, findings directly related to this research question will be reported in a separate paper.

2. We explain our use of the first-person singular in the methods section above.

Additional information

Funding

This work was supported by the Canadian Institutes of Health Research [grant number 97982], and the Fonds de recherche du Québec – Santé (FRQ-S) [grant number 30998].