An exploratory mixed-methods questionnaire study investigating motivators for and reservations about clinical research participation in people living with HIV.

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.