The Involvement of Users and Carers in Health and Social Research: The Realities of Inclusion and Engagement

Document Type

Journal Article




Faculty of Computing, Health and Science


School of Nursing and Midwifery / Centre for Clinical Nursing and Midwifery Research




This article was originally published as: Read, S., & Maslin-Prothero, S. (2011). The involvement of users and carers in health and social research: The realities of inclusion and engagement. Qualitative Health Research, 21(5), 704-713. Original article available here


In this article we explore the challenges to researchers intending to involve vulnerable populations in health and social care research, and provide evidence-based recommendations to support the proactive inclusion of these populations in the research process. We provide a rationale for the study, followed by the introduction and descriptions of our research experiences (presented as two case studies) to provide a contextual backcloth for the discussion.We highlight the inherent challenges in empowering vulnerable populations in research, based on the combination of our own and other people’s experiences. Collectively, these illustrate and underpin practice issues, relate theory to practice in a meaningful way, and facilitate the recognition of the realities in future development in this important area of involving users and carers. We conclude by providing recommendations for future practice and research development from a wider, international perspective.


Link to publisher version (DOI)