Quality of care for Black and Latina women living with HIV in the U.S.: a qualitative study

Abstract

Background: Ending the HIV epidemic requires that women living with HIV (WLWH) have access to structurally competent HIV-related and other health care. WLWH may not regularly engage in care due to inadequate quality; however, women's perspectives on the quality of care they receive are understudied. Methods: We conducted 12 focus groups and three in-depth interviews with Black (90%) and Latina (11%) WLWH

HIV Related Knowledge, HIV Testing Decision-Making, and Perceptions of Alcohol Use as a Risk Factor for HIV among Black and African American Women

“…Specifically, social and structural barriers prevent women from accessing and accepting HIV care and treatment services [ 18 ], and achieving viral suppression and adhering to ART [ 19 ]. Additionally, these social and structural factors contribute to suboptimal quality of care and reduce the quality of life for women living with HIV [ 20 , 21 ].…”

“…HIV stigma may delay or deter women from accessing prevention and treatment services, and thus contribute to greater susceptibility to HIV infection and transmission, and suboptimal care and support for people living with HIV/AIDS (PLWHA) [ 24 ]. Women living with HIV report fears and experiences of HIV-related stigma in health care settings as a hinderance to engagement in HIV care [ 21 ]. HIV-related stigma may also hinder one’s ability to disclose their HIV status and prevent women from seeking social support [ 25 , 26 , 27 ].…”

How Can the Experiences of Black Women Living With HIV Inform Equitable and Respectful Reproductive Health Care Delivery?

“…30 Threats to autonomy include paternalism, which manifest in systems (eg, political, economic, health care) that restrict people's choices. Examples of paternalism in health care settings experienced and reported by WLWH have taken the form of minimal support for and advice regarding pregnancy, 31,32 overestimation of HIV transmission risks to infants, 25 and lack of patient centeredness, 19 all of which can be interpreted as systematic disrespect for the reproductive choices and moral agency of WLWH. Despite minimal risk of maternal-to-child transmission of HIV, recent work by Hill and colleagues highlights that WLWH are more likely than women without HIV to undergo tubal ligations to eliminate vertical HIV transmission risks.…”

“…11 This medicalization of reproduction is magnified for BWLWH, who account for the largest share of HIV diagnoses among women 12 and are at increased risk of adverse health outcomes (ie, lower antiretroviral treatment adherence and higher morbidity and mortality) 13,14,15 due to disparities in health care access, social inequities (eg, violence, competing life demands), 10 intersecting stigmas (eg, gender, race, class, and health status), 16,17,18 and dissatisfaction with their treatment by health care clinicians. 19 Contemporary models of care promote informed, autonomous reproductive decision making for WLWH, given the relatively low risk of maternal-to-child (perinatal) transmission (1%-2%) in the United States, which has been made possible by effective public health interventions (eg, universal HIV testing, preconception counseling, family planning) and medical interventions (eg, antiretroviral therapy, preexposure prophylaxis). 20 In contrast to earlier work suggesting that HIV posed a challenge for reproduction, recent studies have revealed that HIV-positive status does not diminish women's desire to bear children but rather is one of many factors considered in reproductive preferences.…”

“…16 A 2018 systematic review of qualitative and quantitative studies conducted in the United States that were published from 2010 to 2017 documents the continued experience of HIV stigma in health care settings, despite decades of development of HIV treatment and efforts to combat and expose the harmful effects of HIV-related stigma. 28 A 2020 study of predominantly BWLWH in 6 US cities describes their experiences with lack of compassion, judgment, dehumanization, and disrespect in health care delivery settings, 19 which can contribute to psychological distress, delayed care seeking, and avoidance of care. 28 The suboptimal delivery of care to WLWH represents a recurrent ethical dilemma that must be thoughtfully addressed, particularly in the context of reproductive decision-making practices, in order to offer care that is respectful, empathetic, and more effective.…”