This post includes a series of interviews addressing the following: the implementation of one of our team member’s HIV education study, the cultural stigma associated with HIV in Uganda, gender inequalities in matters involving sex and relationships, and the challenges that arise when a scientific approach to disease prevention, treatment and education meets the standpoints of a faith-based organization within a faith-based community.
In addition to our daily medical outreaches to villages in Buseesa and the surrounding area, Uganda Support Mission is supporting another major effort here in the community: Carlo Hojilla’s field study on HIV education and prevention.
Carlo, a 26-year-old MSNP (Masters in Science Nursing Program) student at UCLA, has been interested in HIV for several years. Last Spring he teamed up with Alecia Hanson, the UCLA nursing graduate who spearheads Uganda Support Mission, to create a formal study to address the lack of education about and stigma associated with HIV in Uganda.
“A lot of medical literature on HIV is focused on women and children,” Alecia recounts in my recent interview with her about the study. “So we wanted to try to start working on interventions with men, especially since they have a lot of control over sexual decisions.”
Based on the team’s experience in Uganda in December of 2010 and this past September 2011, hardly any men chose to be tested for HIV out of the 1,235 HIV tests conducted.
“We started talking to men and asking them why they didn’t want to get tested,” Alecia said, “and found that they view a positive HIV status as a ‘death sentence.’”
She discussed with me at length the problems arising with the discovery of an HIV infection, and about how in this patriarchal society, HIV positivity is a sign of weakness; a threat of emasculation; an inability to take care of one’s family.
So, simply, men would rather not know their status.
I sat down with Carlo to get a better understanding of the study and a deeper look into the stigma that inspired its enactment:
Rachel (R): Tell me about the study you’re doing here.
Carlo (C): The study we’re doing involves looking at the effectiveness of working with religious organizations, particularly the village church and the village priest [Father Godfrey], and using his influence to increase knowledge and reduce stigma among men in the community. And also convincing the men to get tested for HIV.
R: How and when did you come with the idea for this study?
C: This came up when I heard about the Uganda trip that Alecia was trying to organize. I talked to her about it. She was mentioning basically that there’s a high prevalence of HIV in Uganda, and I said that’s interesting because my interest is in HIV education and prevention. So I asked her if it would be good to do an HIV education seminar. She said yes, and that they had done it last year. I figured maybe we could do a research study about this. So I talked a faculty advisor, Dr. Namathy, and she said she’d be our faculty sponsor and support our doing this.
R: How did you become interested in HIV education and prevention?
C: I got interested in HIV as an undergraduate. I took a microbiology class and we were talking about HIV. I was just fascinated by the virus and how it attaches to human cells and how it works. I actually thought of changing my major to “micro” and focusing in virology, but that didn’t happen. So I got into nursing and I figured nursing could always branch out into HIV care.
R: Are you happy that the study was approved by UCLA?
C: Yes, very happy. I was jumping up and down. The fact that this is our very first study, and we have no experience writing a protocol—it’s very exciting.
R: What sort of research did you do for the study before coming to Uganda?
C: Basically reading up on prevalence and incidence in Uganda, and HIV education and prevention strategies that they’ve used here before. And also research of the co-infections common with HIV in Uganda.
R: How is the study going so far?
C: So far I think it’s going good.
R: What does the actual seminar look like? And what issues do you cover?
C: It’s pretty informal. We’re out in the field, the guys are sitting. We try to recruit them—we have Father Godfrey inviting the men during the outreach. What happens next is I introduce myself and the rest of the team and explain what it is that we’re doing. Then we have Adolf give an informed consent, which basically describes everything that will be happening in the seminar. We answer any questions they might have and then do a pre-test to assess their baseline knowledge and baseline stigma.
Then we do the education, which primarily covers prevention and transmission. If we have time we also cover treatment and management of HIV.
[The seminars also include lectures and group discussions on the disease process, disease treatment, misconceptions about HIV, and the ABC approach: Abstinence, Being faithful, and Condom use.]
We also discuss the issue of condoms. Father Godfrey, because he’s sort of the main character in the study, presents the church’s position, and then we have our position as well: a little more scientific-based position—the benefits of using condoms. So we leave it up to the participants to decide to use them or not.
Then at the end we have Father Godfrey leave and ask the participants how they feel having him talk to them about HIV. Would they attend the class again if it was taught by Father Godfrey? What did they learn? How did they like the seminar?
R: Do you find that the participants feel more comfortable with Father Godfrey there rather than absent?
C: Surprisingly yes. On our first day, when he was present, the men seemed very restrained. When he left they were raising a lot of questions. Then we he came back he made a point to say, “I may be a priest but you can talk to me, I’m your friend…raise your questions, I don’t care what they are.” And I noticed that they started raising more sensitive questions to him.
R: Why do you think they were restrained?
C: I think just the fact that he’s a priest and maybe the impression that they had to be behaved. Maybe they felt embarrassed raising questions, especially regarding sexuality and sex and relationships and things like that.
R: How many participants of the seminars stay to be tested for HIV?
C: So far out of 34 that we’ve had, I’d say about 25 have been tested. Michael, one of our Ugandan translators for the seminar, says this is actually a pretty good rate.
R: Can you talk more about this stigma associated with men and HIV?
C: Over here I guess there’s a lot of stigma involved with HIV/AIDS—nobody wants to talk to you, nobody wants to touch you, nobody wants to work with you. From reading a lot of articles and from our translators a lot of people with HIV are shunned by their families. They’re seen as being dirty, shameful. So we’re trying to address those myths surrounding HIV by opening up a dialogue.
R: What do you hope will come of this study?
C: The main thing is addressing the stigma surrounding prevention and transmission. It’s not taboo to talk about it, it’s ok to say, “I’m positive.” And also hopefully in terms of sustainability—that we can continue this. Michael and Adolf will be receiving the material we’ve been using. So they can use it here in Buseesa and also in Kaihura.
I wanted to get several perspectives on these issues, so I spoke with Father Godfrey (a Ugandan priest in Buseesa) about his role in the seminar.
Rachel (R): How is the HIV seminar going?
Father Godfrey (FG): Generally speaking, the HIV seminar is going wonderful. I’ve liked it. We have conducted it. I have also liked the response of people. It has been positive.
R: What do you mean by positive?
FG: That is, they participated actively; they listened attentively, and then when we requested them to come for HIV test and counseling, they responded positively, many of the people.
R: Have you been finding that men have accurate ideas about HIV transmission and prevention?
FG: Not all. Some of them have accurate ideas, but some don’t know. They have mixed ideas about the transmission and prevention, HIV and AIDS.
R: What kinds of ways can you prevent HIV—that you tell them?
FG: From the religious point of view we have emphasized 2 major aspects: that is to be faithful to their partners and to abstain themselves from sexual activities—that is abstinence.
R: Even with married men?
FG: Even with married men. With the married men we mostly emphasize the aspect of faithfulness. If the man is faithful to his wife and the wife is faithful to her husband, then the risk of getting HIV is so, so, so minimal.
R: Do you find that a lot of men are unfaithful to their partners, or no?
FG: Well at the moment it is difficult to tell “yes” or “no,” but what I know is that some of the men are not faithful to their partners. But some are faithful.
R: Do some men have multiple wives?
FG: Yes, some of the men are polygamous.
R: Do some women have multiple husbands?
FG: It is a rare case, but they’re there. It’s unusual.
R: What about a married couple where one partner has HIV and the other doesn’t?
FG: Normally we treat that as a special case, first of all we need to sit with the two and agree among themselves.
R: Agree among themselves on what?
FG: Mmm, you know, when they are legally married, that is, when the church makes them a legal marriage, they take vows. And they say, “we shall live together in good and in bad.” And so we first ask the two whether they are still consenting or willing to live together since they made such a vow. If they are not legally married, then they are free to separate. At the moment, it is a sensitive issue, more especially to talk about the use of condoms. We could advise them to use the condoms, but that itself is not a remedy to solving the problem. Because even if they use the condom, we find again when they have abandoned it. So they still can infect each other.
R: Do you think if they used condoms all the time, and never abandoned it, that that would be effective in preventing HIV?
FG: No, because the condom itself has got its limitations. Some of the condoms that are used are not one hundred percent perfect. So whether they use the condoms there are still chances of contracting the virus. If they don’t know even how to use it, if the condom has expired—it has it’s own limitations. So that alone cannot one hundred percent say that if they used it, then they wouldn’t contract the virus.
R: If men used condoms properly—the way that they’re instructed to be used—and if the condoms are not expired, and if you used them every time you have sex, do you think they’re effective in preventing HIV?
FG: I cannot guarantee, because research has found out that even the condoms which are used, some of them are manufactured, but when they are duplicated or when they are not well-…mmmm…prepared, or when they are not properly manufactured, that they have micro pores which can also permeate, allow, the virus to penetrate and then infect the other. So for me, on the religious point of view, I wouldn’t so much advocate for the use of condoms. Though, I do respect that it has got its advantages, that it can help some to alleviate the spread of HIV.
R: You mentioned research—do you remember what research? Can you point to exactly where you found that information?
FG: Ok, I…no, no, no, not necessarily, but you can probably get that information from the National Bureau of Standards. Sometimes in the newspapers it appears that such and such, um, probably the National Bureau of Standards has arrested about 10,000 packets of condoms which are not to standard. They were found to be duplicated. Some of them we read them in the newspaper like The New Vision, or The Monitor, such headlines have appeared in our media. Yeah.
R: Anything else you want to add?
FG: Not at the moment. Thank you.
As an adjunct to Carlo’s study, our female team members also conducted HIV seminars for Ugandan women. I asked them to share what they received as the Ugandan women’s perspective on sex, condom use, relationships, HIV and STD transmission.
Edyssa: They’re very knowledgeable about HIV. Any question we would throw at them they would be able to answer right on the spot. But really, the matter of the issue was that they don’t have any control in using condoms during sex, or to abstain from it if their husband does test positive for HIV. So if they tried to insist on either, they would be beaten.
Ty Ty: I had a patient yesterday who keeps getting STIs because her husband keeps sleeping around with other women. She is 29 years old and has 5 kids with this guy. He wasn’t even there with her at the outreach. She told me that he refuses to get tested for HIV. She asked me what she can do, and I told her she has three options: she can either tell him to stop sleeping around, she can use a condom every time he has sex with her, or she can leave him.
Rachel: What was her response?
Ty Ty: She just laughed.
Mama Lynda: It was very interesting. Their main questions were about how a man who’s HIV positive can have relations with an HIV negative wife. I said that it’s only a matter of time before he will infect her if he’s not using a condom.
Rachel: What did they have to say about condom use?
Mama Lynda: Well they were very frustrated that the men don’t like to wear condoms. They may wear them a time or two but after a while they decide that it’s not as pleasurable to wear one, and that seems to be more important to them than whether or not they’re protecting their wives from HIV.
Rachel: Is it easy for a woman to insist that the man wear a condom during sex?
Mama Lynda: Not at all. The men are the ones who decide and if a woman were to refuse sex or insist the man wear a condom she could suffer a beating. A very frustrating part about this is it seems to be customary for a man to get bored with his wife sooner or later and go outside the marriage for sex. And often that’s where he contracts the virus and brings it home to his wife.
Suzy: In our group the major problem was this: women would ask questions like, "What if my husband has HIV and I don’t, but he’s refusing to wear a condom...what do I do?" We said to leave your husband, but that’s obviously not an option, because that means you’d have to leave all your kids, and not have any means or ways to support yourself.
Rachel: Is there a solution, do you think, for these women?
Suzy: I think we can just really educate the men, because they seem to be the ones that are more resistant, and they have more control. And then maybe hopefully one day get the Catholic church involved to really promote condom use within married couples as well as the men that go out and have relations outside the marriage.
Rachel: If you were leading a men’s HIV seminar, what would be your main point to tell them?
Suzy: Emphasizing that you’re more of a man protecting your family than not wearing a condom.
Chelsea: The main concern was how they could prevent HIV when their husbands were sleeping with other women, and how they could stay negative, because their husbands didn’t want to use condoms and wanted to keep having sex with them. There’s not a real easy solution.
Rachel: Is it easy for a woman to request or insist their partners use condoms?
Chelsea: We talked about what safe sex is, what protected sex is. At first they thought protected sex was sex with someone who wasn’t infected with HIV, so we really had to redefine that: protected sex is with a condoms no matter who it is. They said condoms aren’t very widely used, especially with their husbands—that condoms are something they can’t really ask for.
Alecia: The use of condoms is a tricky. It’s difficult to implement an approach when it’s such a gray issue. The initial problem—the real issue—is being unfaithful. Then what do we do when someone hasn’t been faithful...do we implement condom use or not?
Rachel: How have you been dealing with the gray area?
Alecia: With the gray area, there's always exceptions to the rules. We’re really trying to emphasize faithfulness, which is really coming from a perspective of love. If you love your wife, if you’re HIV positive, you really want to protect her so she can live and take care of the children. I think condom use is very effective as long as they’re using it correctly, and actually using it, and they get condoms that work and don’t have holes in them. I don’t know if this is true, but they say that some Ugandan brands don’t make high-quality condoms. They make cheap ones that break.”
Ok, let's go back to Carlo.
Carlo: Michael [a Ugandan] concurred that there are “fake” condoms out there that are flimsy, they break, or they aren’t constructed so that there aren’t holes in them, and so I think that’s what Father Godfrey was trying to allude to: the fake condoms. I believe Alecia spoke to him about that, that condoms, if they are of good quality, and they’re not made potentially to fool people, are supposed to not have any holes in them. If you use them properly, they're around 97% effective.”
R: What sorts of issues with fidelity have you encountered with the men?
C: We haven’t been directly asking them about extramarital affairs, but based on the socio-demographics we’ve been collecting, some men are reporting that they have 2, 3, 4 wives.
R: Do the female patients you’ve consulted ever talk about being unfaithful to their husbands?
C: No, actually, I haven’t come across that.
R: One of the main issues that our female team members reported after conducting HIV seminars for the Ugandan women in this community is that if the women refuse sex or request that their partner use a condom, it often results in cases of men inflicting violence on those women. Has that issue ever come up during your seminars with the men?
C: No. Father Godfrey tried to touch on that—to love your wife, respect your wife, be responsible to your wife and your family. But yeah, it is a pretty male-dominant society. So basically, sexual decisions are made by men. That is the main reason we want to focus on men in our seminars.