Table 2 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