"Someone who hates themselves doesn't come for their drugs":Experiences of Mental Health along the HIV Care Continuum in South-Central Uganda

Poor mental health occurs more frequently among people living with HIV. Understanding what mental health problems occur and at what point during the continuum of HIV care is critical to ensure these problems are identified and appropriately addressed. We explored how mental health is experienced along the HIV care continuum in Rakai, Uganda. We conducted in-depth interviews with 20 adults living with HIV and 10 health workers. Interviews followed a timeline approach. Responses were analyzed using content analysis. At the time of HIV diagnosis, nearly all participants described a range of strong emotions, including shock, fear and intense worry. Most participants described continued fear and intense worry leading up to, and at the time of, ART initiation. However, they said these emotions often subside after ART is initiated and viral suppression is achieved. Across interviews and at multiple points of the continuum, participants discussed how fear and worry led individuals to be “thinking too much” or be in “deep thoughts” and experience self-hatred. Individuals who stopped taking ART were thought to have more severe mental health problems (madness, psychosis, suicidality). Participants were divided about the mental health of persons who returned to care after disengagement. In this setting, mental health problems experienced by people living with HIV are dynamic across the care continuum. With expanded HIV testing campaigns and Universal Test and Treat policies, targeted interventions for psychosocial support at the time of testing and ART initiation remain critical. ### Competing Interest Statement The authors have declared no competing interest. ### Funding Statement This study was funded by a Johns Hopkins University Catalyst Award, PI author C.E.K. (www.jhu.edu). Author N.S.W. was supported by training grant T32 MH103210 from the National Institute of Mental Health (https://www.nimh.nih.gov). The funders had no role in study design, data collection and analysis, decision to publish, or preparation of the manuscript. ### Author Declarations I confirm all relevant ethical guidelines have been followed, and any necessary IRB and/or ethics committee approvals have been obtained. Yes The details of the IRB/oversight body that provided approval or exemption for the research described are given below: The study was reviewed and approved by the Institutional Review Boards of the Johns Hopkins Bloomberg School of Public Health, The Research and Ethics Committee of the Ugandan Virus Research Institute, and the Uganda National Council on Science and Technology. I confirm that all necessary patient/participant consent has been obtained and the appropriate institutional forms have been archived, and that any patient/participant/sample identifiers included were not known to anyone (e.g., hospital staff, patients or participants themselves) outside the research group so cannot be used to identify individuals. Yes I understand that all clinical trials and any other prospective interventional studies must be registered with an ICMJE-approved registry, such as ClinicalTrials.gov. I confirm that any such study reported in the manuscript has been registered and the trial registration ID is provided (note: if posting a prospective study registered retrospectively, please provide a statement in the trial ID field explaining why the study was not registered in advance). Yes I have followed all appropriate research reporting guidelines, such as any relevant EQUATOR Network research reporting checklist(s) and other pertinent material, if applicable. Yes Data cannot be shared publicly because of content in the informed consent that states no unauthorized individuals outside of the research study will have access to participants data. Reasonable requests for data will be considered by the corresponding author on an case by case basis.