245215 “She told them, Oh That B!%@h Got AIDS”: Understanding the impact of HIV/AIDS- related stigma from the perspectives of Black women of childbearing capacity living with HIV in South Carolina”

Tuesday, November 1, 2011: 1:15 PM

Faith Fletcher, PhD, MA , Department of Behavioral Science, The University of Texas M. D. Anderson Cancer Center, Houston, TX
Lucy Annang, PhD, MPH , Department of Health Promotion, Education, and Behavior, University of South Carolina, Arnold School of Public Health, Columbia, SC
Donna L. Richter, EdD, FAAHB , Department of Health Promotion, Education and Behavior, University of South Carolina-Arnold School of Public Health, Columbia, SC
Ruth P. Saunders, PhD, MPH , Health Promotion, Education and Behavior, Arnold School of Public Health, Columbia, SC
Richard Sowell, PhD, RN, FAAN , Kennesaw State University, Wellstar College of Health & Human Services, Professor and Dean, Kennesaw, GA
Libby Bogdan-Lovis, MA , Michigan State University College of Human Medicine, Michigan State University Center for Ethics and Humanities, East Lansing, MI
     
Considering the risks of transmitting HIV to an infant and/or an HIV-negative sexual partner, combined with concerns about possibly leaving a living child behind, one might expect HIV-positive women to either delay or avoid childbearing entirely. Despite such unique challenges, research reveals that HIV-positive women's pregnancy desires differ little from those of non-infected women. While societal norms and expectations generally promote motherhood, HIV-positive women conversely are often discouraged from becoming pregnant, since total pregnancy avoidance is the only way to completely eliminate perinatal transmission risk among HIV-positive women. Paradoxically, advising HIV-positive women not to have children is inconsistent with the ideology of “living with HIV/AIDS,” and such advice infringes on their personal reproductive freedoms. Through a qualitative phenomenological research approach, 42 HIV-positive Black women of childbearing capacity in South Carolina were interviewed to recount their experiences living with HIV, particularly related to their pregnancy intentions. Overall, study participants described stigmatization as one of the most pervasive and challenging aspects of living with HIV/AIDS. Stigma manifested in interpersonal-, community-, and institutional-level discrimination, which affected every facet of the women's lives from seeking employment to reproductive decision-making. The social consequences of stigma included embarrassment, loss of respect, loss of identity, and loss of privacy and confidentiality. We contend that in order to respect HIV-positive women's autonomy, public health practitioners and healthcare service providers alike should resist contributing to the suffering brought on by such stigmatization and instead should promulgate respect for all possible childbearing decisions made by HIV-positive clients.

Learning Areas:
Chronic disease management and prevention
Public health or related research
Social and behavioral sciences

Learning Objectives:
Describe the value of public health practitioners and healthcare service providers emphasizing concern for women’s overall health and well-being, particularly as it relates to the need to respect HIV positive women’s reproductive autonomy rather than viewing women as disease vectors. Discuss the extent to which stigma impacts the lives of Black women living with HIV/AIDS in South Carolina by providing compelling examples of interpersonal-, community-, and institutional-level discrimination from the accounts of women in the study with a focus on those examples representing violations of women’s human rights. Describe ethical challenges encountered by the investigative team during the conduct of the research study as they sought to avoid further stigmatizing an already marginalized and vulnerable population.

Keywords: Ethics, Women and HIV/AIDS

Presenting author's disclosure statement:

Qualified on the content I am responsible for because: As a current postdoctoral fellow, I am qualified to present because I have been involved in the conduct of HIV/AIDS research for the past 6 years.
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: Vulnerable Communities: Ethical Responses to Marginalization and Stigmatization
See more of: Ethics SPIG