Assessment of personal experiences navigating medical systems and society for patients of a midwestern Ryan White funded HIV Clinic

BACKGROUND: In the early years of the HIV/AIDS crisis, the debilitating consequences of HIV/AIDS stigma and discrimination became known as part of “the 3rd phase of the epidemic.” Many of these consequences still impact HIV/AIDS care today. In the state of Illinois, the HIV prevalence in Chicago and its collar counties does supersede the prevalence of HIV elsewhere in the state of Illinois, and past HIV research has utilized mostly urban MSM populations. Unfortunately, although HIV is not an exclusively urban disease, little is known about HIV stigma in smaller communities and lower prevalence contexts. METHODS: Participants were recruited from our local HIV clinic in a county population of 184,000 people. The clinic serves the HIV/AIDS population of Peoria proper as well as the 14 surrounding, more rural counties. Twenty participants were invited for a 1 hour recorded interview speaking of their experiences with HIV stigma. Using a qualitative approach in grounded theory, two researchers independently coded the transcripts and then came to a consensus. Core themes were then summarized. RESULTS: Sources of stigma included the general community in central Illinois, other outpatient medical clinics, medical testing facilities such as ancillary laboratories, and the LGBT community. Major sources of support included family and loved ones, the HIV medical clinic, and the HIV patient community. Many patients reported HIV education to be assuring, and though facing many social obstacles, ultimately feeling strengthened by adversity. In order to address HIV stigma in the community patients suggested greater networking among HIV infected patients and increased education for the general public. CONCLUSION: HIV stigma is still a distressing social force to HIV infected patients in the heart of Illinois. Though medical management of HIV has advanced significantly in recent years, the stigma that accompanies a diagnosis of HIV infection remains to be effectively addressed in a comprehensive and conscientious manner. Our study points to the need for tailored interventions in outpatient medical settings, as well as throughout the general community in central Illinois. DISCLOSURES: All authors: No reported disclosures.