178001 Exploring decision making: Why do Hispanics and African Americans participate in HIV/AIDS clinical research?

Wednesday, October 29, 2008

Migdalia V. Rivera-Goba, EdD, RN , Research and Practice Development Service, National Institutes of Health, Clinical Center, Bethesa, MD
Dinora Dominguez, BS, RN , Patient Recruitment and Public Liaison Office, National Institutes of Health, Bethesda, MD
Christine Grady, PhD, FAAN, RN , Department of Bioethics, National Institutes of Health, Clinical Center, Bethesda, MD
Pamela Stoll, BSN, RN , Clinic 8, National Institutes of Health, Clinical Center, Bethesda, MD
Catalina Ramos, BSN, RN , National Heart, Lung, and Blood Institute (NHLBI), National Institutes of Health, Clinical Center, Bethesda, MD
Marcela C. Morgan, MSW, LCSW-C , Social Work Department, National Institutes of Health, Clinical Center, Bethesda, MD
Robert Miranda-Acevedo, MPA , National Institute on Deafness and Other Communication Disorders (NIDCD), National Institutes of Health, Bethesda, MD
Jeasmine E. Aizvera, MSSW, LCSW-C , Social Work Department, National Institutes of Health, Clinical Center, Bethesda, MD
Deloris Koziol, PhD, MPH , Biostatistics & Clinical Epidemiology Service, Office of the Director, National Institutes of Health, Clinical Center, Bethesa, MD
Lori A. Purdie, MS, RN , Inpatient Services, National Institutes of Health, Clinical Center, Bethesda, MD
JoAnn M. Mican, MD , National Institute of Allergy and Infectious Diseases (NIAID), National Institutes of Health, Clinical Center, Bethesda, MD
Significance: Underrepresentation of Hispanics and African Americans in clinical trials is of significant concern for many reasons, including that it inhibits generalizability of results.

Methods: A descriptive, exploratory, mixed methods study was designed to examine the decision-making process among a convenience sample of minority patients enrolled in active HIV/AIDS protocols at the National Institutes of Health. Participants had the option of participating in one of four focus groups (N=21), an in-depth interview (N=24), or both (N=8). Participants were also asked to respond to demographic, acculturation, and social support questionnaires. Although the researchers purposely did not ask questions regarding trust, the focus group moderator and the in-depth interviewer were provided with probes in the event that a participant raised the issue of trust. All written materials were translated into Spanish by a linguist with expertise in scientific terminology. Data were collected by interviewers with similar ethnic/racial, cultural, and linguistic backgrounds as the participants.

Results: Preliminary data suggests that primary providers, contribution, trust, volunteerism, and compensation are factors that influenced patients' decisions to enroll in a clinical trial. Further identified were enhancers, barriers, and beliefs as they pertain to decision making, including respect, expectations and racial/ethnic concordance.

Conclusions: By asking participants to describe their own research experience, a better understanding may be gained of their decision-making process, thereby impacting the public health of these communities. These data may help researchers develop strategies to facilitate inclusion of Hispanics and African Americans with HIV/AIDS in clinical trials.

Learning Objectives:
Describe factors influencing clinical research participation of Hispanic and African American patients with HIV/AIDS. Discuss the role of patient-provider concordance. Identify at least two strategies to guide research with Hispanic and African American communities.

Keywords: Decision-Making, Research

Presenting author's disclosure statement:

Qualified on the content I am responsible for because: I am the Principal Investigator of this HIV/AIDS protocol at the National Institutes of Health.
Any relevant financial relationships? No

I agree to comply with the American Public Health Association Conflict of Interest and Commercial Support Guidelines, and to disclose to the participants any off-label or experimental uses of a commercial product or service discussed in my presentation.

See more of: Contemporary Issues in HIV Prevention and Care
See more of: HIV/AIDS