Delayed HIV testing and treatment seeking, and associated support needs among people living with HIV in Malaysia: a qualitative study

Background: By the end of 2017, an estimated 83% of people living with HIV in Malaysia knew their serostatus. However, the Ministry of Health reported a high proportion of those newly diagnosed had low CD4 counts <200 cells/mu L, indicating late presentation for testing may be pervasive. Methods: A qualitative study was conducted to explore the context and experiences of people at risk of HIV infection testing and seeking treatment later in the course of their infection. Participants recruited (n = 20) were HIV positive, aged >18 years who fit the description of late presentation (World Health Organization defined as CD4 cell count <350 cells/mu L). Semi-structured interviews were conducted, and a framework approach was used to interrogate the data. Results: Many participants perceived themselves at low risk of HIV infection and did not undergo routine voluntary testing; rather, they were diagnosed when seeking treatment for serious illness or as part of mandatory employment-related testing. Perceived lack of confidentiality and potential discriminatory behaviour at public health facilities were significant deterrents to testing. Participants were satisfied with HIV treatment, but rarely sought psychosocial support in order to 'protect' their privacy. Conclusion: Unless drivers of HIV infection are effectively addressed, including stigmatising and discriminatory practices, and low health literacy, the occurrence of late presentation will persist. Their collective impact will not only jeopardise efforts to improve the treatment cascade, but may also impact engagement with other biomedical prevention and care technologies.