Who to Tell and When: Experiences with Direct and By Proxy Status Disclosure Among Black Women Living with HIV

Background and Purpose: Black women living with HIV are faced with the constant decision of whether to disclose their HIV status. Stigma surrounding HIV often leads many women to hesitate in disclosing. Disclosure can take various forms, with some women choosing to disclose directly while others may do so indirectly, through proxies. The decision to disclose is a careful one, with women selecting individuals to whom they reveal their status with great consideration. While disclosing sensitive information is generally believed to have positive effects on mental health by reducing stress, it can be challenging when stigma is involved, leading to fears of rejection or harm. Despite the potential benefits of disclosure, it can expose women to stigma, discrimination, and risks such as loss of employment, housing, and personal relationships. This study examines how Black women living with HIV experience HIV status disclosure.

Methods: Criterion sampling was used to recruit Black women living with HIV from local community based health partners. This qualitative study (N=15) designed to explore Black women’s lived experiences as it relates to of HIV status disclosure. All participants identified as cisgender women between the ages of 32 to 57 years. We used a phenomenological approach to explore commonalities among Black women’s lived experiences as it relates to HIV disclosure. Data was collected from March to May 2020. Individual interviews lasted approximately 60 minutes and audio recordings were transcribed verbatim and checked for accuracy by the research team. Thematic analysis was used to identify, analyze, and interpret patterns or themes within the data.

Results: Four themes emerged. Theme 1, Assessment of Trustworthiness: Before disclosing, women evaluated the trustworthiness of the individual. They assessed the person's ability to keep information confidential, knowledge about HIV transmission, and attitudes toward people living with HIV. Theme 2, By-Proxy Non-Consent Disclosure: Others disclosed the woman's HIV status without her consent, sometimes with the intention of helping, but occasionally for harmful or manipulative purposes. Theme 3, Forced Disclosure: Women were forced to disclose their HIV status. This occurred when someone confronted them after discovering their medication, recognized them at an HIV clinic, or if medical practitioners pressured them into disclosure. Theme 4, Disclosure to Protect: Participants discussed instances where they chose to disclose their HIV status to certain individuals (e.g., sexual partners, family members, children, dentists) to protect them from potential transmission.

Conclusions and Implications: Black women living with HIV encounter numerous challenges that influence their decision regarding disclosure of their status. Despite HIV being a chronic condition, social stigma and discrimination persist, leading many women to hesitate in sharing their status. Even though they may be reluctant to disclose, some may have their status revealed indirectly by others, leading to negative consequences. Social workers working with women of color living with HIV should be mindful of the various factors influencing disclosure decisions and regularly address concerns related to the disclosure process. This work presents an opportunity to intervene and support vulnerable women in navigating disclosure situations.