Presentation


Background

The California Partner Study, a study of sexual HIV transmission among heterosexuals, recruited 372 HIV serodiscordant couples and followed a total of 175 couples over a 10-year period (1985-1995). Couples were recruited from clinics, test sites and community-based organizations in Northern California.

Participants in the Partner Study received behavioral risk assessments, laboratory tests and physical exams every 6 months in their homes or at a nearby clinic.

Couple and one-on-one counseling about safer sex practices was offered by a staff member during the study visits. The staff member also provided referrals and there were occasional social events.

Significant behavior change was reported among participants, despite the absence of a standardized risk-reduction intervention. Over 80% of couples always used condoms at any given follow-up visit, compared to 49% at intake (Padian et al., 1993 JAIDS).

Methodology

The Formative phase of a new HIV serodiscordant couple study (California Partners Study II) began in November, 1995.

Mail Surveys were completed by accessible past Partner Study participants (n=77).

15 women and 13 men (N=28) were then selected to participate in focus group discussions and in-depth individual interviews. See Table I for demographics.

Interview and focus group protocols included open ended questions inquiring about participation in the Partner Study and the management of HIV in relationships.

Qualitative data was coded using linguistic markers and entered into Folio ViewsTM qualitative data management software program.

Directed content analysis was conducted to identify emergent themes. Themes were explored through the constant comparative method and converted into topic files (memos) for analysis.

Findings

Four aspects of HIV management in serodiscordant relationships emerged from the qualitative analysis:

  1. Communicating about HIV
  2. Keeping sex alive
  3. Involving/engaging the male partner
  4. Providing support and counseling to the HIV- partner

I. Communication about HIV

External and Internal stigma impacted communication

“Outside” response to a couples’ serodiscordance was a common concern. Stigma was experienced at the level of family, friends, and community.

Some struggled with the public exposure of the relationship:

I feel silly saying this…yet there’s no shame associated but I’m in the legal profession and I’m dealing with, you know, and yet in this area of the country in California so many people are so much better educated about HIV and AIDS now that it shouldn’t be an issue but I’d just as soon keep that mask. I don’t want people relating to me through that [her serodiscordant relationship] so I’d rather keep that private. (HIV- woman)

Many felt unsupported in their relationship by some family members and friends:

Because right now my family doesn’t even like me living with [my partner]. I mean my parents came up to visit us after my after I had [an operation] last year. And my mom had no problem with using anything. My dad was real hesitant…he wouldn’t even touch our soaps. He brought his own soap, own shampoo, own towel, own dishes from home. (HIV- woman)

Difficulty with disclosure of both the HIV+ partner’s status and the mixed serostatus in the relationship were frequently mentioned. Internalized stigma impacted couple’s ability to communicate about HIV in their relationships:

[Staff member] was great. She was just a wonderful person and she was the first person that we talked to about being HIV positive…she was very compassionate and gave a lot of information and um, just made it not a secret or such a horror. I mean it was very difficult. (HIV- woman) Because it [the Partner Study] was partners. It was both of us. And it would give an opportunity for he and I to discuss things that we ordinarily wouldn’t discuss. (HIV+ woman) In our case it [the Partner Study] profoundly impacted our relationship with dealing with HIV. [...] And I think it is a form of counseling, whether it was directly meant to be counseling or not, it counseled us in dealing with the living with HIV as a couple. (HIV+ man)

Serostatus Identity and Roles impacted communication

Managing HIV meant managing identification in the realtionship as either the HIV infected or uninfected partner.

Differences in roles and identities of the HIV- and HIV+ partner was alienating at times and impeded communication about HIV:

But I can’t talk to [my partner] about it because he either doesn’t understand or he gets frustrated because he figures I should be happy because I’m still okay [HIV-]. And yet I can’t be happy when something is bothering me. And as long as I don’t know what it is that’s keeping me from testing positive its going to keep bothering me. (HIV- woman) If you have it, if you’re HIV+ you know, but if you don’t, there’s always that slight doubt. You don’t stop smoking just because there’s cancer. Until you get it you don’t stop. You don’t fix your washing machine until it breaks down, you know what I mean by that? It’s like she – that’s the same with my partner at the time. She doesn’t have it, I do. So it’s on my mind one hundred percent, and maybe only on hers ninety nine point nine even, or something. But not the same amount because she doesn’t have it. You can’t explain the taste of something to somebody…until you taste it you can’t. (HIV+ man) [The Partner Study] was a place to talk about our concerns ’cause we were interviewed each privately. We seemed to have a lot of health concerns so I could talk to [nurse] about, ’cause I worried a lot and I seemed to, you know, for a while everything had something to do with [partner]‘s HIV although it didn’t. But you know, there was a lot of anxiety. (HIV- woman)

II. Keeping sex alive

Sexual Loss

Many participants received skills and support through the Partner Study to lead a healthy and active sexual life after the HIV diagnosis of a partner. This was an important validation for those who felt pressure to end all sexual activity or their relationship because of HIV.

Many HIV+ partners described a process of sexual abdication immediately after testing HIV+:

It’s like me, when I first found out that I was HIV positive I automatically decided that that was the end of my sex life and I didn’t do sex for two years until I met [my partner]…Cause I knew I could do safe sex that wasn’t my problem, my problem was that I didn’t think safe sex could be any fun so I just threw down the baby with the bath water you know. (HIV+ woman)

Fear of HIV Transmission

There were many couples in which HIV+ partners reported worry and fear about infecting their HIV- partners. This presented an on-going struggle with the role of sex in the relationship:

I think it’s more like with me, it’s like the less sex we have is due to me, in our situation. And it’s not – and it’s an excuse, it’s my excuse that I don’t want to pitch the poison dart, but it’s not entirely valid not having that [sex]. (HIV+ man)

Even participants who consistently practiced safer sex, described the struggle between the “rationality” of lower risk safer sex and the “irrationality” of fear and guilt associated with sexual intercourse with negative partners.

Using knowledge to increase sexual comfort

The Partners Study helped alleviate sexual loss through risk reduction counseling, regular HIV testing for the negative partner, and epidemiological knowledge about HIV transmission.

This knowledge helped to normalize HIV in sexual relationships, combating stigma and increasing relationship comfort:

Just the education, sexual information, condoms. [Partner Study staff] said what worked and didn’t work and what what they found to be more helpful or less helpful and then kind of um in some ways even gave the okay to be sexual in a way and kind of the notion that it could be fun even with a condom. (HIV- woman)

Multiple Risk Management Strategies

Overall, HIV risk management strategies ranged from the adoption of consistent safer sex practices for some couples to the perception of immunity from HIV infection for others.

Regular study visits provided an opportunity to talk about HIV and a “reality check” that helped maintain safer sex practices for some couples:

It broke a little bit of the denial. There was reality check when the [staff] person came, that this was happening in our lives. I feel like I’ve been suffocating and the secrets been really heavy and very difficult and um it was a place for me to talk about feelings and I was sexually active with my husband so it was kinda strange you know to kinda of just live this reality but wasn’t a reality. And so. The information too and just everything about lot of information about actual figures, statistic things, you know, about how if I could contract, not contact, you know, all that. It was really important. The education. (HIV- woman)

Participants described the challenge of translating the knowledge about HIV into their sexual relationship as a double-edged sword that could help or harm their ability to consistently practice safer sex:

The study helped us to stay safe. What was most helpful was that experience [suspicion of seroconversion]. I will never have unprotected sex anymore…Also, they checked and they couldn’t find any virus in my husband’s sperm and they told us that. It may be the reason why I didn’t convert, because for one year before we were married we lived together and had unprotected sex. But they told us that, so it gave a false sense of security. That’s bad, we could have used that as an excuse to have unsafe sex; my husband felt that if we had had sex for one year without transmission, maybe we could do it again? You have to use some scare tactics [with people]. (HIV- woman) It helped him gain knowledge to understand that he didn’t have to be afraid of me that we could continue to have sex, you know, that it was more important to me. (HIV+ woman) I think the study has been instrumental in keeping a lot of people’s sex lives alive because of the reassurance of the numbers, the statistics say you can have pretty darn safe sex if you follow these guidelines. [...] So I think the study’s been very instrumental in keeping us safe because we know, what the parameters are of being safe and also making you feel like you can. I had to, when my husband first tested positive, I kinda had to push him to continue to have sex with me he was so afraid of infecting me. (HIV- woman)

Couples use of knowledge of HIV transmission illuminated the conflict between generalized epidemiological facts and behavior in a single serodiscordant relationship:

I mean I think what is really hard with this thing, and it’s been really hard since the epidemic started, that you’re walking a really fine line between trying to make people aware of what’s going on and not trying to alarm people to a point that’s totally not beneficial. So you know I think we’re always walking that line when you’re talking about this virus. (HIV+ woman)

Ever Changing “facts” about HIV also created problems within couples in the management of HIV:

You know my husband was told that oral sex they found was a low risk behavior. And I’m sorry but men don’t need to hear that, I’m sorry. And you know he was like willing, and I’m like, no, no way. (HIV+ woman)

III. Involving/engaging the male partner

Both women and men interviewed explained that the woman partner in the relationship was responsible for involving her male partner in the Partner study.

Study participation helped women to engage otherwise unresponsive male partners:

It [the Partner Study]was his only contact with anything to do with HIV. It was very minimal, but at least it was something and I think that’s it. (HIV+ woman) It was very difficult to get my husband to do anything. So it was the only thing actually that I could do for myself and indirectly he could benefit. (HIV- woman) My husband’s not a real social creature and, so I think it was really important for him to be involved in just getting this information, but I think it was really important to me. I tend to be the conduit through which we stay connected to things. (HIV- woman)

IV. Providing support & counseling to the HIV- partner

The management of HIV was a “couple issue”. Yet, many participants reported feeling that appropriate couple services, particularly for heterosexuals, were unavailable:

A lot of people think that they’re alone. But there’s lot of couples. Again, I think in the gay community there’s a lot more resources. I think in the heterosexual community there isn’t as much. And if it is it’s just not as obvious. And I think the group sessions for couples has been nonexistent and if it’s around its very sparse. I haven’t heard really too many groups of couples getting together discussing about it on a regular basis, but that’s been real helpful for us, to talk to other couples, see how they’re dealing with it, and find out that everybody’s kind of got a lot in common in dealing with it.

This was particularly true of HIV negative women who expressed a great need for counseling and support:

It’s like everybody’s giving support to the AIDS patient but whose giving support to the caregiver? You know, I mean we’ve got nobody to call. We really don’t because we can talk amongst ourselves with other caregivers but eventually before we can get down to any issue resolving somebody’s going to get called away by their sick person needing something you know or wanting company. ‘Cause I found a lot of the time I resented [my partner] because he makes, he gives me such a big drain of my time. (HIV- woman)

Conclusion

The findings in this study indicate programs working with heterosexual HIV serodiscordant couples should consider the following issues:

  • External and internalized HIV stigma
  • Identity formation in relation to HIV serostatus
  • The challenge of healthy sexuality in HIV serodiscordant relationships
  • The management of knowledge about HIV with respect to:
  • Fear of infection of the negative partner
  • Interpretation of scientific facts in real life
  • Rapid changes in scientific knowledge
  • Both HIV+ and HIV- partners need to be involved and supported in services for people affected with HIV.

Results for this formative research are currently being used in the California Partners Study II behavioral intervention.

Last modified: February 24, 2011