Avoiding the word “HIV” to bring women in for testing – a good strategy?

Kim Ethier Stover

Senior Improvement Advisor, USAID ASSIST Project/URC

I recently took a trip to Mozambique to gather learning around the Partnership for HIV-Free Survival's (PHFS) Community Demonstration Project, led by ASSIST. In Gaza Province in Mozambique, we worked with three health facilities, Licilo, Chissano, and Incaia, and their catchment communities. I had the opportunity to meet with community groups participating in the project, bairro (community) improvement teams and Health Committees, consisting of bairro improvement team representatives, at the Health Centers. The goal of the PHFS Community Demonstration Project was to contribute to elimination of mother to child prevention through increased community awareness, improved community-facility linkages and increased access to services for pregnant women. Bairro teams were responsible for passing on key health messages about the importance of early antenatal care (ANC), identifying and referring pregnant women and following up with those women who did not attend ANC.  

QI Community Team Meeting in Mozambique

QI Community Team Meeting in Mozambique

As I met with these different groups, I became increasingly convinced that the translator must be making a mistake. The community members I was meeting with kept talking about encouraging women to go to ANC for anemia checks, testing and treatment of “infections”, malaria and identification of potential problems which needed referral to a higher level. I finally asked the translator whether he meant HIV when he said “infections” and he told me, no, they aren’t mentioning HIV at all. I was perplexed. They had all been trained on the importance of early ANC for testing for HIV and getting HIV positive women on treatment as soon as possible. Why were they not mentioning HIV at all? The ASSIST Community Advisor explained to me that pregnant women were scared to find out their status for fear that their husbands would divorce them or throw them out or simply were afraid to know that they were “sick.”  

The next day, I posed the questions to the Health Committee. The nurse of Licilo Health Center told me, “The consensus was that [the community groups] wouldn’t talk about HIV because that scares [women], so they would talk about malaria, types of food to eat, and other infections.” By other infections, she was referring to sexually transmitted diseases which could be treated.   This activity resulted in an increase in the number of women accessing ANC services, and in Licilo, we have data that shows that women are coming in much earlier in pregnancy. Between March 2014 and March 2015, 241 pregnant women were found to be HIV positive and 240 of them were initiated on treatment in the three health centers.  

I couldn’t help wondering, however, whether this was the right kind of success. The locally-developed solution to address women’s fears was successful because it found a way around those fears to get them into care and convince their husbands and mothers-in-law that ANC was important. But, there appeared to be no reduction in the stigma and fear associated with HIV in these communities. Bilene District where these sites were located has HIV prevalence rates of over 29% for women and over 16% for men. HIV had affected these communities to the extent that in two bairros, the women outnumbered the men 3 to 1. In Muheza, Tanzania, the USAID ASSIST project also applied the same model to improve loss to follow-up of HIV patients. The results there were the opposite – increased discussion of HIV and the importance of continued treatment at multiple community meetings and venues meant that people became more comfortable discussing it at home. 

This trip to Mozambique left me wondering - is a strategy of avoiding discussion of HIV a good one if we get the results we were after? 

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Why were they not mentioning HIV at all? Patients are apprehensive when offered a HIV test and workers may not be aware of likely barriers and be ready to identify and address them with patients. Aside from fear of social stigma/ discrimination, other barriers include underestimation of risk, denial of risk, fear of partner violence, distrust in healthcare system or providers, fear of positive result and financial barriers. Faced with these questions, “Doesn't the fact that I'm in a monogamous relationship make a difference? But I feel totally healthy, wouldn’t I feel sick if I had HIV? Are you implying I am promiscuous? Is it because I have a STI?”, workers get stuck. Without the competencies to recognize and address patient barriers to HIV screening, an easier option is not to mention HIV at all. Workers need to be able to elicit a good sexual history and address the social context that may influence the patient's willingness to be tested. Questions like, “Are you currently sexually active?, Do you have sex with men, women, or both?, In the past 12-months, how many sex partners have you had?”, need to be asked within a culturally sensitive ambience. Risk-based screening is not particularly effective in identifying people with HIV. Testing routinely reduces stigma, is effective and risky behavior is reduced with awareness of HIV status.

Subiri - Thanks for these thoughtful comments. I was not in Mozambique long enough to really determine what the root causes of the stigma and reluctance were, but all of your points are helpful suggestions of things to consider. From my observation, the health workers themselves during clinic visits were able to talk about HIV and to successfully encourage women to be tested. It appears that the reluctance to discuss HIV openly was at the community level, and I'm sure that many of the social nuances that you mention were at play.

One nurse told me a story to show how they try to accommodate and work around this reluctance to openly address HIV. She said that she had one pregnant woman that was found to be HIV positive and she was afraid to tell her husband who was working in South Africa. The nurse and woman agreed to tell her mother-in-law and ask for advice. The three of them came up with a plan. The woman would begin taking medication, but not tell her husband. When the husband came home, the mother-in-law (husband's mother) encouraged them both to get tested, saying that she had heard at a community meeting that this was important. They were tested and both found to be positive. The nurse pretended that this was new information and put them both on treatment. The husband never knew that the nurse, mother, and pregnant woman had known for months about the woman's status. In this way, they felt they were doing the best thing for the pregnant woman by avoiding any possible negative reaction of her husband (divorce, violence, etc).

Again, it strikes me as such a grey area with no "right" or "wrong" answers. But as your comment points out, whenever we can, we should try to understand what is really happening and make sure that health workers are equipped to deal with it.

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