Women living with HIV (WLWH) continue to face stigma from multiple sources, according to research presented in an oral presentation at the Association of Nurses in AIDS Care (ANAC) annual meeting held November 17 to 19, 2022, in Tampa, Florida.

The first case of AIDS was reported more than 40 years ago and since then, people living with HIV (PLWH) have faced persistent stigma that affects both patients’ lives and the continuum of HIV care. Stigma is an important barrier to ending the HIV epidemic, according to coauthors Sadie Sommer, MPH, and Julie Barroso, PhD, RN, ANP, FNAP, FAAN, from Vanderbilt University School of Nursing.

The qualitative study is an update of an NIH-funded study the authors first published in 2004 that focused on the HIV-related stigma in WLWH. “In considering the development of an intervention to help WLWH deal with stigma, we decided to conduct another qualitative metasynthesis,” they noted. The investigators searched the literature for relevant studies published between 2004 and July 2021. A total of 36 qualitative studies met the inclusion criteria. Most studies (80.8%) were based on data collected through interviews.

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Data was analyzed on 1027 women aged 18 to 76 years (mean, 40.4 years) who were primarily Black (77.8%); 12.8% were White, 7.9% were Hispanic, and 1.5% were American Indian, Asian Pacific, or other ethnicities.

Major Sources of Stigma in Women Living With HIV

The qualitative metasynthesis identified 5 major sources of stigma:

  • Poverty (eg, homelessness, lack of transportation, dependence for survival needs)
  • Mental health (eg, depression, anxiety, shame, and loneliness)
  • Trauma (eg, adverse childhood events, interpersonal violence, and substance use)
  • Discrimination (eg, motherhood, gender, ethnicity, and religion)
  • Health care (eg, lack of treatment, health care provider discrimination especially in the setting of pregnancy, and lack of care coordination)

The sources of stigma had a nonlinear relationship with coping mechanisms, such as social support, spirituality, motherhood (paradox: source of both stigma and resilience), optimism, and motivation. One of the keys to transcending stigma for many women was the power of strategic disclosure. “Disclosure presented a quandary for many women who strategically disclosed their status to gain social support, yet such disclosure paradoxically made them vulnerable to stigma and discrimination” noted the authors. In many narratives, the choice to disclose or not to disclose was cited as “an act of defiance against HIV stigma,” during which women could assert their rights and release themselves from “hiding in shame.”

Finding Resilience and Coping Skills

These coping mechanisms contributed to resilience that then counteracted stigma and led to transcendence and acceptance. Some participants felt a sense of personal meaning and believed in the power in their own self-care. Some women thought their HIV diagnosis saved their lives and that the diagnosis process was a wake-up call, becoming the impetus for transitioning from substance use to recovery.

In general, the participants expressed that they had better coping skills with age. The journey through HIV-related stigma led some women to pursue advocacy work because they wanted to convey to younger women the importance of valuing and protecting themselves. “Advocacy and seeking and providing peer support was integral to many women’s experience,” noted the authors. For others, “their desires for education and advocacy focused primarily on their hopes for the next generations.”

Women living with HIV must first survive living at the intersection of multiple sources of stigma that create an overlapping and interdependent system of disadvantage, the study authors concluded. With the primary coping strategy of calculated disclosure, many WLWH have been able to transcend stigma and achieve resilience.

“Providers need to understand how WLWH have been able to transform the experience of stigma,” the researchers noted. “Stigma has played a major role in lack of engagement in care and in nonadherence to antiretroviral medications, so helping women try some of the strategies found in this [study] are critical to their well-being.”

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Sommer S, Barroso J. A qualitative metasynthesis of stigma in women living with HIV. Presented at: ANAC2022; November 17-19, 2022; Tampa, FL.