“Someone who hates themself doesn’t come for their drugs”: Experiences of mental health along the HIV care continuum in South- Central, Uganda

October 10, 2024 by
“Someone who hates themself doesn’t come for their drugs”: Experiences of mental health along the HIV care continuum in South- Central, Uganda
Aber Maurine
Nora S. West1*; William Ddaaki2; Sarah M. Murray3; Neema Nakyanjo2; Dauda Isabirye2; Rosette Nakubulwa2; Fred Nalugoda2; Pamela J. Surkan4; Heidi E. Hutton5; Caitlin E. Kennedy4

Affiliations:

1Division of Pulmonary and Critical Care Medicine, University of California San Francisco, San Francisco, California, United States of America
2Rakai Health Sciences Program, Kalisizo, Uganda
3Department of Mental Health, Johns Hopkins Bloomberg School of Public Health, Baltimore, Maryland, United States of America
4Department of International Health, Social and Behavioral Interventions Program, Johns Hopkins Bloomberg School of Public Health, Baltimore, Maryland, United States of America
5Division of Psychiatry and Behavioral Sciences, Johns Hopkins School of Medicine, Baltimore, Maryland, United States of America

*Corresponding author: nora.west@ucsf.edu

Abstract

Introduction
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.

Methods
We conducted qualitative semi-structured in-depth interviews with 20 adults living with HIV and 10 health workers from March to December 2020. Interviews followed a timeline approach. Responses were analyzed using content analysis.

Results

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.

Conclusion
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.

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