An exploratory mixed-methods questionnaire study investigating motivators for and reservations about clinical research participation in people living with HIV
Author(s)
Type
Journal Article
Abstract
Clinical research in healthcare settings offers substantial benefits, including reduced mortality rates in research-active hospitals and access to novel treatments for participants. Despite these advantages, research often faces recruitment challenges, particularly under-representation of women and ethnic minorities. This study explores the views of people living with HIV regarding research participation. This mixed-methods study was conducted at a central London hospital's HIV outpatient clinic and Clinical Trials Centre from April 2018 to January 2019. Using the COM-B models as a theoretical framework, questionnaires were designed for individuals currently or previously involved in research, and for those with no prior research involvement. Questions included demographics, motivators and reservations about research participation, and the importance of information sources when deciding to participate in research. Quantitative data were analysed descriptively, and a framework analysis of qualitative data was completed. Of the 155 respondents, 50 were participating in research, and 105 were not. Key motivators included advancing medical knowledge, altruism and access to new treatments. Major barriers were time commitments and concerns about side effects. 80% of people participating in research, and 74% of those not participating rating rated discussions with regular clinicians to be very important when deciding to participate in research. Women faced similar barriers to the overall cohort, particularly related to time commitments and care-giving responsibilities. Research participation is influenced by the therapeutic relationship with, and input from regular clinicians. Addressing barriers such as time commitments through flexible scheduling, integrating research and clinical visits, and utilising remote visits could improve recruitment. Involving patients in research design via Patient and Public Involvement and Engagement (PPIE) ensures protocols are acceptable and tailored to participant needs. Effective collaboration between researchers and clinicians is essential to optimise research recruitment. Clear, empathetic communication and flexible study designs can address participant concerns, ultimately enhancing involvement in clinical research.
Date Issued
2025-12-01
Date Acceptance
2025-07-09
Citation
AIDS Care, 2025, 37 (12), pp.2161-2173
ISSN
0954-0121
Publisher
Informa UK Limited
Start Page
2161
End Page
2173
Journal / Book Title
AIDS Care
Volume
37
Issue
12
Copyright Statement
© 2025 The Author(s). Published by Informa UK Limited, trading as Taylor & Francis Group This is an Open Access article distributed under the terms of the Creative Commons Attribution-NonCommercial-NoDerivatives License (http://creativecommons.org/ licenses/by-nc-nd/4.0/), which permits non-commercial re-use, distribution, and reproduction in any medium, provided the original work is properly cited, and is not altered, transformed, or built upon in any way. The terms on which this article has been published allow the posting of the Accepted Manuscript in a repository by the author(s) or with their consent.
Identifier
10.1080/09540121.2025.2534531
Subjects
Research involvement
patient and public involvement
recruitment barriers
recruitment motivators
HIV research
Publication Status
Published
Date Publish Online
2025-07-21