The burden of knowing: balancing benefits and barriers in HIV testing decisions. a qualitative study from Zambia

Data were collected through 17 in-depth interviews and two focus group discussions with individuals and 10 in-depth interviews with counsellors. Interpretive description methodology was employed to analyse the data.'To know your status' was found to be a highly charged concept yielding strong barriers against HIV testing. VCT was perceived as a diagnostic device and a gateway to treatment for the severely ill. Known benefits of prevention and early treatment were outweighed by a perceived burden of knowing your HIV status related to stigma and fear. The manner in which the VCT services were organised added to this burden.This study draws on social stigma theory to enhance the understanding of the continuity of HIV related stigma in the presence of ART, and argues that the burden of knowing an HIV status and the related reluctance to get HIV tested can be understood both as a form of label-avoidance and as strong expressions of the still powerful embodied memories of suffering and death among non-curable AIDS patients over the last decades. Hope lies in the emerging signs of a reduction in HIV related stigma experienced by those who had been tested for HIV. Further research into innovative HIV testing service designs that do not add to the burden of knowing is needed."I went there [the VCT centre] and even reached the door, and immediately I felt weak. I was scared and left. What if I was told I was positive? I would have died."Woman, not accessed VCTHIV counselling and testing (HCT) has been promoted as essential in working towards universal access to prevention, treatment, care and support [1,2]. Although client-initiated HCT has been scaled up in many African countries, demand is often low, despite studies demonstrating a high willingness to be tested [3-5]. The substantial gap between stated willingness to be tested and actually being tested indicates the presence of strong acceptability barriers against client-initiated HCT in its current form. A growing body of