Marseille 2007
| Abstract #530 - Research Participants Experiences of the Clinical HIV Research Process | ||||
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Session: 47.6: Ethics and Law (Parallel) on Wednesday @ 08.30-10.30 in Auditorium/Overflow Chaired by Susan Newcomer, Anjali Nayyar Authors: Presenting Author: Dr Catherine Worthington - University of Calgary, Canada |
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| Additional Authors: Dr M John Gill, Mr Christopher O'Connor, | ||||
| Aim: Research on research participation tends to neglect the experiences of research participants and the contextual and social factors surrounding the research process. The aim of this study is to develop a comprehensive conceptual framework to understand research participants experiences with clinical HIV research (including survey, diagnostic and clinical trial research). In this analysis, we focus on clinical research participants perceptions of, and reflections on, the research process. | ||||
| Method / Issue: We adopted a mixed methods approach to develop the conceptual framework, incorporating a grounded theory approach and survey methods. We analyzed transcripts from semi-structured interviews conducted with a purposive sample of 22 attendees of a comprehensive HIV clinic in Alberta, Canada. The findings from 230 surveys completed by a convenience sample of patients at the same clinic were utilized to supplement the qualitative findings. | ||||
| Results / Comments: Several broad themes emerged: 1) Understandings of the research process, 2) Experiences with participating in the research process, and 3) Reflections on the research process. Despite their claims of being well informed, interview participants understandings of the research process were somewhat limited. Participants indicated that they were provided with the requisite information to make an informed decision about whether to participate in a study and yet knew little about the research process. Comments indicate that this seeming paradox may be a result of the trust given to care providers, selective memory, and the nature of informed consent. Interview participants had both positive and negative research experiences and these experiences tended to vary depending on the type of research. For example, the more invasive the research procedure (e.g. clinical trial participation, diagnostic tests) the more likely the participant was to report negative experiences in contrast with reports of more positive experiences for less invasive procedures (e.g. taking a survey). Some of the negative aspects of participating in research discussed by interviewees included: managing pain, dealing with uncertainty (e.g. from side effects), committing large amounts of time, and concerns over confidentiality. Some of the positive aspects described by participants included: enjoyment of process (the research was fun and easy), a sense of giving back (contributing), health improvements, improved knowledge of the medical system, and strengthened relationships with clinic medical staff. Interview participants reflections on the research process suggest that participants would like researchers to rely more heavily on the personal experiences of participants when deciding treatment directions (and thus are only partially aware of the intersections of their individual treatment with the research process). Also, participants would like access to summary results of the studies in which they participate. | ||||
| Discussion: These findings suggest possible modifications to the way the research process is explained and delivered to participants. Further, the findings suggest the need for researchers to focus more attention on examining the complexities inherent in both participants experiences as well as the research process itself. | ||||
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