The uncertainty of treatment: Women's use of HIV treatment as prevention in Malawi

Abstract

In countries throughout sub-Saharan Africa, antiretroviral therapy is seen as the solution to not only treat existing patients, but also to prevent the future spread of HIV. New policies for the prevention of mother-to-child transmission place women on lifelong treatment as soon as they are tested HIV positive. This article looks at how women understand this prescription for lifelong treatment. Drawing on interviews with HIV-positive women in Lilongwe, Malawi (N = 65) during July-September 2014, I examine the process of making treatment decisions, and why - despite increased access - women refuse or stop treatment. Using treatment for preventative purposes transforms the experience of HIV from an acute to a chronic condition where both the symptoms of disease and the efficacy of treatment are unclear. Women look for evidence of the cost and benefit of treatment through their personal experiences with illness and drug-taking. For some women, the benefits were clearer: they interpreted past illnesses as signs of HIV infection, and felt healthier and more economically productive afterwards. For others, taking treatment sometimes led to marital problems, and side effects made them feel worse and disrupted their ability to work. While women understand the health benefits of antiretroviral therapy, taking treatment does not always make sense in their present circumstances when there are costly physical and economic repercussions. This study builds on existing sociological research on medical decision-making by situating decisions in a broader political economy of changing HIV policies, economic conditions, and everyday uncertainty.

“Is it making any difference?” A qualitative study examining the treatment‐taking experiences of asymptomatic people living with HIV in the context of Treat‐all in Eswatini

“…While some participants in our study felt they did not need treatment in the absence of symptoms, others reinterpreted past illnesses and physical experiences such as fatigue, low energy and weight loss as signs of HIV, which served to warn them of the potential imminent health deterioration without treatment, thereby motivating their engagement with care. Such reinterpretations of past events as indications of HIV were also found by Zhou, and influenced women's ART initiation within Option‐B+ , suggesting the importance of experiential, embodied experience in treatment decisions. Certain participants in our study felt that a HIV diagnosis itself pointed to the need for treatment.…”

“…Under previous treatment guidelines, recounting narratives of illness history and comparing pre‐ and post‐ART health could motivate continued treatment‐taking . Although PLHIV are now increasingly initiating ART when clinically asymptomatic, findings from Option‐B+ suggest that interpretations of physical improvements on ART, in particular falling sick less often, feeling more energetic and therefore more productive can be important for supporting continued treatment‐taking . Certain PLHIV in our study who did not experience any such physical signs of HIV prior to starting ART, changes on ART or viral load results presented doubts about the need for treatment and its effectiveness.…”

“…describe treatment‐taking as a concretization of illness, rather than health . As HIV treatment for preventative purposes within Treat‐all transforms HIV from an acute to chronic condition, the symptoms of disease and efficacy of treatment become less apparent . While some participants in our study felt they did not need treatment in the absence of symptoms, others reinterpreted past illnesses and physical experiences such as fatigue, low energy and weight loss as signs of HIV, which served to warn them of the potential imminent health deterioration without treatment, thereby motivating their engagement with care.…”

Awareness and perceived fairness of option B+ in Malawi: a population‐level perspective

“…Insufficient transparency is not merely an academic concern; it threatens the moral legitimacy of policies and policymakers [31] and can impede any programme's success. Challenges with uptake and default among HIV-positive pregnant women under Option B+ [46][47][48][49] might be partially explained by women's confusion at being told to start ART the same day they are tested and stay on it regardless of how they feel, when they know symptomatic peoplesometimes their own husbandsw h od on o ty e th a v ea c c e s s [50][51][52]. If women, and the men who support them, understood the policy and the reasons behind it, they might be better ART users.…”

Exploring factors associated with ART adherence and retention in care under Option B+ strategy in Malawi: A qualitative study

“…Barriers identified in the few existing published qualitative studies include inadequate counseling [8,12], ART-related side effects [13–14], fear of disclosure [15–16], HIV-related stigma [15–16], skepticism about lifelong treatment [12] and poor patient-provider interactions [15–16]. Among these studies, few considered perspectives directly from Option B+ women who had already defaulted from HIV care [13–15].…”