Elsevier

Social Science & Medicine

Volume 158, June 2016, Pages 52-60
Social Science & Medicine

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

https://doi.org/10.1016/j.socscimed.2016.04.013Get rights and content

Highlights

  • Examines decision-making process for HIV treatment as prevention.

  • Describes how HIV positive Malawi women understand Option B+.

  • Unique interview sample that covers a range of treatment experiences.

  • Situates treatment decisions in a political economy of HIV policy and economic constraints.

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.

Section snippets

Barriers to adherence

Public health research has explored how and why HIV-positive women use treatment. Scholars focus on identifying the myriad of potential factors that prevent patients from taking prescribed treatment. The list of barriers for HIV-positive women is comprehensive; it ranges from individual to community and institutional level factors, including: insufficient knowledge of HIV/ART, fear of treatment, religious beliefs, poor drug management, difficulty in reaching the clinic, HIV stigma, fear of

Context and methods

Malawi is one of the poorest and least developed countries in the world. It is ranked 173 of 188 countries on the Human Development Index, and more than half the population (72%) survives on less than US$1.25 dollars a day (United Nations Development Programme, 2015). 16.7% of children under five are considered underweight (2 standard deviations below the international median), and 42% experience stunted growth from chronic malnutrition (World Bank, 2015). In addition, Malawi is ravaged by the

The uncertainty of treatment

Treatment decisions are neither static nor permanent. By the time of the interview, many women had already changed their decision. About half of the women who initially accepted ART stopped for some time (26/55). Of the women who initially refused, about half started treatment later (4/10), and of the women who stopped, about half started treatment again (16/26). On average, women stopped ART during pregnancy for a few months before starting again, though the length of time varied widely,

Finding the benefit of ART

Echoing research on illness experience, women construct narratives about what caused the onset of illness, what the early signs were, and what affect it is having on their lives (see Pierret, 2003). For some women, the benefit of ART was apparent when they interpreted past illnesses as signs of HIV infection and medication led to improvements in their physical condition. Not only did this fit their conception of what medication should do, it also provided economic benefits since improved health

Self-regulation

The benefits of ART were not clear to all women. For some, treatment led to worse, rather than better, health outcomes. While they did not have symptoms before starting treatment, they clearly experienced symptoms of sickness after taking ART from side effects, such as dizziness, vomiting, and sleep disruption. Women felt confused and questioned whether ART is working properly. Amidst the uncertainty of an unseen and unfelt disease is the tangible sickness caused by the medicine itself.

Women

Political economy of taking ART

Women's embodied experience of ART is related to their broader economic circumstances. Living situations in Malawi are constantly in flux. At some point, a woman might be married, have piecework, and a good harvest, while at other times, she might find herself divorced and depending on family for basic needs. Many women and their husbands did not have consistent work, and they sometimes had to sell land and other goods to buy food. One woman describes her situation after her husband lost his

Conclusion

This article describes how women in Malawi make decisions about taking HIV treatment. Women are told to start treatment often before they have symptoms and may experience side effects that make them feel worse than before. They look for evidence of the drug's efficacy based on their experiences with sickness and drug-taking. For some women, the benefits of ART lined up neatly. Treatment had both physical and material benefits; they felt healthier and more productive at work after taking ART.

Acknowledgements

I would like to thank Stefan Timmermans, Susan Watkins, CK Lee, Edward Walker, Caroline Tietbohl, Saskia Nauenberg, Marie Berry, Tom Hannan, Juan Delgado, and Leydy Diossa for providing helpful comments on earlier versions of this article. I also appreciate feedback from members of the UCLA Health Working Group and the anonymous reviewers of Social Science & Medicine. I am very grateful to my Malawian research assistant and the participants who shared their stories with us. I received valuable

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