BackgroundPatients retained in HIV care but not on antiretroviral therapy (ART) represent an important part of the HIV care cascade in the United States. Even in an era of more tolerable and efficacious ART, decision making in regards to ART offer and uptake remains complex and calls for exploration of both patient and provider perspectives. We sought to understand reasons for lack of ART usage in patients meeting the Health Resources Services Administration definition of retention as well as what motivated HIV primary care appointment attendance in the absence of ART.Methods and FindingsWe conducted a qualitative study consisting of 70 in-depth interviews with ART-naïve and ART-experienced patients off ART and their primary care providers in two urban safety-net HIV clinics in San Francisco and New York. Twenty patients and their providers were interviewed separately at baseline, and 15 dyads were interviewed again after at least 3 mo and another clinic visit in order to understand any ART use in the interim. We applied dyadic analysis to our data. Nearly all patients were willing to consider ART, and 40% of the sample went on ART, citing education on newer antiretroviral drugs, acceptance of HIV diagnosis, social support, and increased confidence in their ability to adhere as facilitators. However, the strength of the provider recommendation of ART played an important role. Many patients had internalized messages from providers that their health was too good to warrant ART. In addition, providers, while demonstrating patient-centered care through sensitivity to patients experiencing psychosocial instability, frequently muted the offer of ART, at times unintentionally. In the absence of ART, lab monitoring, provider relationships, access to social services, opiate pain medications, and acute symptoms motivated care. The main limitations of this study were that treatment as prevention was not explored in depth and that participants were recruited from academic HIV clinics in the US, making the findings most generalizable to this setting.ConclusionsProvider communication with regard to ART is a key focus for further exploration and intervention in order to increase ART uptake for those retained in HIV care.
Many low-income people of color living with HIV are not virally suppressed. More research is needed to understand how socially marginalized, disengaged, or inconsistently engaged people living with HIV (PLWH) contend with antiretroviral therapy (ART)-related challenges, particularly in the context of interactions with HIV care providers. Twenty-seven semi-structured interviews were conducted with low-income Black and Hispanic PLWH in the New York City area who were currently, or recently, disengaged from outpatient HIV health care at the time of the interview. Participants valued patient-centered health care in which they felt genuinely heard and cared for by their HIV clinicians. This desire was particularly pronounced in the context of wanting to change one's ART regimen. Participant emphasis on wanting to manage ART-related challenges with their providers suggests that HIV providers have an instrumental role in helping their patients feel able to manage their HIV.
Using qualitative data, this article explored the circumstances leading to HIV testing among 59 HIVinfected adolescents recruited from New York City HIV clinics. Results showed differences between the heterosexual women and the gay and bisexual men. Most of the young women were tested during routine health care or self-initiated tests, and most were asymptomatic when they tested positive. Their testing decisions were sometimes based on assessments of their boyfriends' risk behaviors, rather than their own. Many males were experiencing symptoms of illness when they tested positive, and about half of these recognized their symptoms as related to HIV and sought tests. Some young men expressed fear of learning about positive test results, which delayed their testing, and some providers did not initially recommend HIV testing for males who presented with symptoms. The article concludes that consideration of these gender and sexual orientation-related concerns can facilitate HIV testing among adolescents.
HIV-related 'conspiracy beliefs' include ideas about the genocidal origin of HIV and the nature and purpose of HIV-related medications. These ideas have been widely documented as affecting myriad health behaviours and outcomes, including birth control use and HIV testing. Most HIV-related research has quantitatively explored this phenomenon, and further qualitative research is necessary to better understand the complexity of these beliefs as articulated by those who endorse them. Moreover, public health in general has over-emphasised the role of the Tuskegee Syphilis Study in explaining mistrust, rather than focus on ongoing social inequalities. Twenty-seven semi-structured interviews were conducted with low-income Black and Latinx people living with HIV who were currently, or had been recently, disengaged from HIV medical care. Beliefs about the role and intentions of the government and pharmaceutical industry in the epidemic highlighted the racism and classism experienced by participants. Notably, however, HIV care providers were not perceived as part of the government-pharmaceutical collusion. Interventions should focus on fostering positive beliefs about HIV medication and building trust between HIV care providers and populations that have experienced ongoing social and economic exclusion. Replacing the phrase 'conspiracy beliefs' with more descriptive terms, such as HIV-related beliefs, could avoid discrediting people's lived experiences.
Further research is needed to better understand how structural inequality may shape how people experience mistrust, and how mistrust may factor into the constellation of barriers to consistent engagement in HIV care.
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