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Table 2 Disclosure risks, impacts to engagement in care and mechanisms to avoid disclosure

From: 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

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