Why Increasing Availability of ART Is Not Enough: A Rapid, Community-Based Study on How HIV-Related Stigma Impacts Engagement to Care in Rural South Africa

Background

Stigma is a known barrier to HIV testing and care. Because access to antiretroviral therapy reduces overt illness and mortality, some scholars theorized that HIV-related stigma would decrease as treatment availability increased. However, the association between ART accessibility and stigma has not been as straightforward as originally predicted.

Methods

We conducted a “situational analysis”—a rapid, community-based qualitative assessment to inform a combination HIV prevention program in high prevalence communities. In the context of this community-based research, we conducted semi-structured interviews and focus groups with 684 individuals in four low-resource sub-districts in North West Province, South Africa. In addition to using this data to inform programming, we examined the impact of stigma on the uptake of services.

Results

Findings suggested that anticipated stigma remains a barrier to care. Although participants reported less enacted stigma, or hostility toward people living with HIV, they also felt that HIV remains synonymous with promiscuity and infidelity. Participants described community members taking steps to avoid being identified as HIV-positive, including avoiding healthcare facilities entirely, using traditional healers, or paying for private doctors. Such behaviors led to delays in testing and accessing care, and problems adhering to medications, especially for men and youth with no other health condition that could plausibly account for their utilization of medical services.

Conclusions

We conclude that providing access to ART alone will not end HIV-related stigma. Instead, individuals will remain hesitant to seek care as long as they fear that doing so will lead to prejudice and discrimination. It is critical to combat this trend by increasing cultural acceptance of being seropositive, integrating HIV care into general primary care and normalizing men and youths’ accessing health care.

Disclosure risks, impacts to engagement in care and mechanisms to avoid disclosure

The impact of increased availability of ART

Fewer HIV-related deaths reported, HIV has transitioned from a “death sentence” to a chronic disease

HIV-related stigma declining but still present

HIV remains highly associated with promiscuity and adultery

Efforts to control knowledge about a person’s HIV infection

Avoided disclosure for fear of abandonment or prejudice

“Counterfeiting,” or citing TB, other illnesses or witchcraft as cause of illness instead of HIV, a common way to avoid disclosure

Did not take treatment to avoid explaining need for medications to family or people they are living with

Seeking care is in conflict with keeping HIV status private

Being seen at the clinic (for any reason) caused suspicion of HIV or gossiping; this significantly delayed HIV testing or engagement in care and was especially problematic for youth and men

Home based care workers visiting a house could signal to neighbors that someone was HIV positive; false contact information given or care from home based care workers was refused

Clinic infrastructure such as HIV specific rooms, filing systems, different colored folders and coding systems revealed HIV status to other patients

There was a severe distrust of health care workers breaking confidentiality, partially fuelled by patients knowing nurses at local health facilities

Attempts to increase engagement to care and combat stigma met with varying success

Reduced initiation of treatment or adherence because treatment had to be picked up at clinics.

Community members spend more money and/or time to go to a private doctor or attend facilities in a different community

Clinics tried to facilitate support groups or encourage an ART “supporter” for PLHIV—these were met with varying success

Male dominated spaces (i.e. mine health facilities & truck stop clinics) were more successful in engaging men in care

Full article at:   http://goo.gl/3B8l0x

By:  Sarah Treves-Kagan, Wayne T. Steward, Lebogang Ntswane, Robin Haller, Jennifer M. Gilvydis, Harnik Gulati, Scott Barnhart, and Sheri A. Lippman

University of California, San Francisco, Center for AIDS Prevention Studies, San Francisco, CA USA

University of Washington, International Training and Education Center for Health (ITECH) – South Africa, Pretoria, South Africa

University of California, San Francisco, Global Health Sciences, San Francisco, CA USA

University of Washington, International Training and Education Center for Health, Seattle, WA USA

Sarah Treves-Kagan, Email: moc.liamg@haras.nagak.

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