Female Patients' Stigma, Disclosure Concerns Reduce Their Access to HIV and TB Care in Africa, Study Shows

There's nothing like hearing the results of studies directly from those who actually conducted the research. In this interview, you'll meet one of these impressive HIV researchers and read his explanation of a study he presented at IAS 2009.

I'm David Mafigiri. I am a medical anthropologist. My affiliation is with Uganda, East Africa, where I'm a lecturer at Makerere University. I also visit as a research fellow in the United States, at Case Western Reserve University in Cleveland, Ohio.

My interest is in research on HIV/AIDS and TB [tuberculosis] control using community-based initiatives. This poster concerns the experiences that both men and women in Africa, specifically Uganda, undergo during that treatment.¹ It concerns the spectrum of HIV care, from when they first suspect that they have HIV, to when they first test, to when they get treatment, and then retention or maintenance.

David Kaawa-Mafigiri, Ph.D., M.P.H.

For this specific poster, we examined the social context of disclosure. We know that the ability to disclose enhances your care, your testing, your entry into care and your ability to retain care -- to remain on care, especially in a setting where many people depend on different social-support networks.

But HIV comes with so much stigma. So one of the problems most people have is disclosure to confidants, to family, to loved ones.

This is part of a big cohort study funded by the NIH [U.S. National Institutes of Health]. It concerns the social context of HIV treatment and prevention during the era of increased access to antiretrovirals.

We realize that disclosure continues to be a big problem that hinders many men and women from entry into early care. Women bear the brunt of the burden of HIV in sub-Saharan Africa. In our interviews, the narratives that the women gave us show that they also have a harder time disclosing. Disclosure for them is associated with more negative repercussions. So for that reason, they are less likely to disclose compared to men, and so they enter care late.

Unfortunately, women in our setting also have lower social status. This impacts access to health care. They have to wait for permission. Many of them don't work. Though staying at home is work, because here it is not quantified by pay, they have to wait for their husbands to give them money or take them to hospital.

If you can't disclose to your husband, or brother, or whomever, then you can't access care.

The preliminary analysis here shows us that there are gender differences in patterns of disclosure, in patterns of how people perceive the stigma of HIV/AIDS. Therefore, most programs that are concerned with increasing the efforts of making care available need to consider that women continue to have a bigger burden. Although, generally, both men and women still suffer a lot of the problems of stigma.

Are there other reasons you think that women bear a greater stigma?

For me, the most important reason is that they are generally disenfranchised. They are dominated. These are very paternalistic societies. Any time you have someone who is not equal due to gender or other social factors, those people always suffer more. Young girls, for example, will have their first sexual encounter before young boys. Young girls will have bigger problems reporting to a health care center compared to boys. Women who are married will find it harder to control their spouse, because traditionally it's the men who go out in the drinking venues and it's the men who earn the money.

I think it's generally the common factors that are known that have led to male domination -- which are largely social factors, nothing biological. Although, they will use biology to justify the differences between men and women.

That's the main reason I can think of: lower social status, less education. Our demographics will show you they are less educated. They have less income. They drop out of school earlier than boys. There are communities where boys are taken to school and girls are left out. Girls are married off very early.

Boys inherit. Girls don't inherit. That's very important in terms of passing on resources for the future. Traditionally, girls don't inherit. If I want my lineage to continue, my family -- like the old Victorian type of western society -- you don't consider the girl to be able to pass on your line. That's why I was telling you they use biology, because girls don't produce "meaning," do not fertilize. They use biology to divide. Both male and female parts play more or less equally in conception. But they consider that the man is the one who is producing in your line. We borrowed that, I think, from western societies.

Thank you so much, David.

This transcript has been lightly edited for clarity.

Reference

1. Kaawa-Mafigiri DK, McGrath JW, Winchester MS, et al, and Center for Social Science Research on AIDS. "Maybe my husband is on ARVs, but I cannot tell him that I am on them": gendered patterns of HIV disclosure and treatment experience in urban and rural Uganda. In: Program and abstracts of the 5th International AIDS Society Conference on HIV Pathogenesis, Treatment and Prevention; July 19-22, 2009; Cape Town, South Africa. Abstract MOPEC029.
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