Stigma reduces and social support increases engagement in medical care among persons with HIV infection in St. Petersburg, Russia

Abstract

IntroductionThe proportion of people living with HIV (PLH) in care and on antiretroviral therapy (ART) in Russia is lower than in Sub-Saharan Africa [1]. This is undoubtedly due to a variety of systems and structural issues related to poor treatment access, linkage and care delivery models. However, little research has explored the reasons that PLH are not in care from their own perspectives. This information can help to guide the development of approaches for improving HIV care engagement in the country.Materials and MethodsIn-depth interviews were undertaken with 80 PLH in St. Petersburg who had never been in HIV medical care, had previously been out of care, or had always been in care. Participants were recruited through online PLH forums and Websites, outreach needle exchange and non-government organisation (NGO) programs, and chain referral. The interviews elicited detailed information about participants’ experiences and circumstances responsible for being out of care, and factors contributing to nonretention in HIV treatment. Verbatim transcriptions of the interviews were coded and analyzed using MAXQDA software to identify emerging themes.ResultsTwo types of care engagement barriers most often emerged. Some related to medical services, and others to the family and social environment. The most frequent medical service barriers were poor treatment infrastructure conditions and access; dissatisfaction with quality of services and medical staff; and concerns over confidentiality and HIV status disclosure. Social barriers were fears of potential harm to family relationships, negative consequences if status became known at work, and public stigmatization and myths associated having an HIV+ status. Social support from the PLH community and from family and close friends facilitated care engagement, as did motivation to take care of oneself and one's family. Most participants also described circumstances in which engaging into HIV care was brought about by an urgent issue (opportunistic infections) or was enforced through hospitalization or imprisonment. Trust in one's doctor and simply not wanting to die were also common motives.ConclusionsStigma was a major barrier to care engagement, including fear that others would learn of one's HIV+ status, whether at work, in one's family, or in the general community. By contrast, support from family, friends and the PLH community contributed to care engagement.

Internalized HIV and Drug Stigmas: Interacting Forces Threatening Health Status and Health Service Utilization Among People with HIV Who Inject Drugs in St. Petersburg, Russia

“…Active outreach that encourages engagement in care ought to be enacted to connect these individuals to the HIV and drug treatment services they need to maximize their health and, potentially, protect that of their drug-using and sexual partners. Previous qualitative research with people with HIV in St. Petersburg has underscored the importance of perceived quality of medical staff/services and trust in one’s doctor as determinants of health service utilization [12]. Strengthening protocols to protect patients’ private health information within clinical care settings, communicating the value placed on such confidentiality to patients, and supporting patient–provider relationship-building over time through continuity of care may help to reduce the fears of confidentiality being breached and distrust of doctors commonly expressed as barriers to care by socially marginalized groups in Russia [12, 13].…”

“…Attitudinal studies in Russia have highlighted pervasive stigma directed toward both people with HIV [21–23] and people who inject drugs [24, 25] as well as the potential deterrent effect of HIV and drug stigmas on service utilization [12, 13, 24–26]. Fear of confidentiality being breached and anticipated harm to personal and professional relationships are among the most common barriers to care reported by people with HIV in St. Petersburg [12].…”

“…Fear of confidentiality being breached and anticipated harm to personal and professional relationships are among the most common barriers to care reported by people with HIV in St. Petersburg [12]. People who use drugs face similar social penalties and barriers to care, which are structurally reinforced: Access to drug treatment in Russia typically requires formal registration as a drug user and monitoring for 5 years following treatment, during which time quality of life can be significantly compromised by restrictions on employment, licensure to drive, and military service.…”

The Association of HIV-Related Stigma to HIV Medication Adherence: A Systematic Review and Synthesis of the Literature

“…The experience of stigma may also be detrimental to the physical health of PLWH and interfere with their ability to manage the disease, including delayed or avoidance of HIV testing [22][23][24][25] and poor engagement in care [26,27]. A recent meta-analysis concluded that HIV-related stigma is associated with several physical health indicators, including AIDS-related symptoms, clinical stage of the disease, and self-reported physical health [17].…”

Access to HIV Care and Resilience in a Long Term Conflict Setting. A Pilot Qualitative Assessment of the Experiences of Living with Diagnosed HIV in Mogadishu, Somali

“…The results of this study suggest that in the event that stigma reduces and there is an increase Preprints (www.preprints.org) | NOT PEER-REVIEWED | Posted: 12 June 2017in social engagement, the people will cope favourably with their conditions as earlier highlighted (Kelly et al, 2014). …”