title: The involvement of users and carers in health and social research: the realities of inclusion and engagement.
abstract: 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.
authors.affiliation: Keele University, Staffordshire, UK. s.c.read@nur.keele.ac.uk
authors.forename: Sue
authors.initials: S
authors.lastname: Read
authors.forename: Sian
authors.initials: S
authors.lastname: Maslin-Prothero
mesh_terms: D017028:Caregivers / Q000523:psychology*; D003299:Cooperative Behavior; D006302:Health Services Research / Q000379:methods*; D006801:Humans; D007258:Informed Consent; D008880:Midwifery; D009729:Nursing; D010353:Patient Education as Topic / Q000379:methods*; D010358:Patient Participation / Q000379:methods*; D018579:Patient Selection; D016730:Program Development; D015397:Program Evaluation; D036301:Qualitative Research