Seeking to understand why adherence to pre-exposure prophylaxis (PrEP) was extremely high in a study of serodiscordant couples, qualitative researchers have found that trial participants saw PrEP as a way they could preserve their relationship despite the pressures created by the knowledge of different HIV status and the risk of infection.
In an article published online ahead of print last week in the Journal of Acquired Immunity Deficiency Syndromes, Norma Ware and colleagues also report that the support of study staff and of HIV-positive partners was crucial in supporting adherence.
Pre-exposure prophylaxis is a novel HIV-prevention strategy in which HIV-negative people take antiretroviral drugs before possible exposure to HIV, to lower the risk of infection.
Several studies suggest that PrEP is biologically efficacious. However, a major challenge for the real-world effectiveness of PrEP is that it relies on people who are not ill taking medication on a daily basis. Adherence has turned out to be less than perfect in some of the studies: for example, in the iPrEx trial of men who have sex with men, only around half actually took the drugs as prescribed.
However, adherence was significantly better in the Partners PrEP study, which recruited HIV-negative people who were in a stable heterosexual relationship with an HIV-positive person (i.e. they were in a ‘serodiscordant’ relationship), in Kenya or Uganda. Based on pill counts at the prescribing clinic, 97% of prescribed doses were taken. Based on unannounced pill counts at home, 99% of doses were taken. As a result, PrEP was more effective in this population.
In order to better understand why and how these near-perfect levels of adherence were achieved, Norma Ware and colleagues conducted in-depth interviews with 60 of the Partners PrEP trial participants in rural Uganda. Most interviews (45) were conducted with HIV-negative people taking PrEP, while 15 were with their HIV-positive partners. Just over half the participants were men, their average age was 35 and most had been study participants for over a year.
These were long-term relationships, with an average duration of just under ten years. Four out of five couples had children together. However, in most couples the HIV-positive partner was only diagnosed with HIV a few months before the PrEP study began.
Discovery that one partner was HIV-positive while the other was not created a crisis for most couples. HIV-negative partners felt hurt, angry and betrayed by the evidence of infidelity that infection represented to them, and threatened by the prospect of their partner’s imminent illness and premature death. Infected partners, for their part, feared “dying alone.”
Tensions developed, sometimes escalating into violence. Some relationships came close to fracturing under the strain.
When they found out that their partner had HIV, many of these interviewees felt that they could not both preserve their health and stay in the relationship. Avoiding HIV infection was paramount, but appeared impossible for HIV-negative partners, especially women. Long-term condom use was an unrealistic alternative, as condoms were considered expensive, inconvenient, uncomfortable and inconsistent with the desire to have children.
The researchers call this the ‘discordance dilemma’, which was described by one participant:
“I feel stuck. I love my wife. I want to have sex. I don’t like condoms. I don’t want to get infected, either... It’s not easy. It’s difficult. It’s a dilemma.”
Couples struggling with the discordance dilemma saw PrEP as a ‘way out’. They understood that PrEP was unproven but fervently hoped that it would enable them to continue with the relationship.
“If it wasn’t for this research, I wouldn’t be with my wife after discovering she is HIV+. All my hopes are in this research, because I don’t have any other protection. I can’t say I will keep using condoms all the time... When this research ends, I will know whether the drugs work or not. I will then see whether to go ahead and build a family with my wife.”
Seizing on the opportunity offered by PrEP in a context of limited resources, participants willingly travelled long distances every month to keep follow-up appointments and replenish pill supplies. Similarly, they put effort into developing adherence support strategies – timing doses to daily radio programmes, using mobile phone alarms and selecting dosing times that fitted with work schedules.
While children sometimes helped with reminders that it was time to take the pills, it was more common for HIV-positive partners to help in this way. Many (but not all) partners were concerned and attentive, wanting to see the pill being taken, taking their own medication at the same time, carrying out pill counts or simply reminding their partner.
“[My husband reminds me] to take my drugs the moment the time is up. Even before the radio mentions the time, he quickly reminds me that I need to swallow my drugs. If he knows I am travelling somewhere, he tells me to carry my drugs. He doesn’t want me to leave my drugs behind.”
Study participants received adherence counselling on a monthly basis and the counsellors were cited as being a crucial source of support. Interviewees turned to counsellors with concerns about adherence, study procedures, the temptation to drop out and relationship problems. Not infrequently, interventions by study counsellors had been instrumental in averting separation.
“We tested and were told that my husband is positive while I am negative. I wanted to leave the relationship and ... go back to my home. That is when we were taken to [the research site]. There, we found other health workers who gave us advice about how we should live together. They taught us all that and I became strong.”
However, not all relationships were able to withstand the strains created since the diagnosis of HIV. Some experienced tension and quarrelling over suspected infidelities, condom use, and other problems. For some, sex became less frequent, with the couple living together but leading largely independent lives. Some partners ‘gave up’ and separated.
Some individuals taking PrEP complained of lack of co-operation from partners in their efforts to avoid acquiring HIV. Complaints ranged from perceived indifference to active opposition. Some individuals believed that their partner had ‘sinister motives’ and wished to deliberately transmit HIV in order to avoid ‘dying alone’.
When partners were unco-operative, this contributed to adherence lapses. Some interviewees lost sight of the ‘point’, temporarily ‘giving up’.
“I began to suspect he is seeing other women...is he sleeping with other women so he can acquire more infection and pass it on to me? [This makes me] so angry that I feel it’s useless to keep taking this medicine. Because of that, I decided to leave it.”
Summing up, the authors say that relationship dynamics had a major impact on adherence in this setting: “Near-perfect adherence is motivated by a desire to avoid HIV infection while preserving the partnered relationship and reducing reliance on condoms. Support from HIV- positive partners and family members reinforces adherence efforts of individuals, facilitating adherence success. Discord in the relationship detracts from that success.”
They note that some of the cultural and economic factors which motivate couples to stay together, even in difficult circumstances, may be particular to this rural region of Uganda. Marriage is socially expected and considered a life-long commitment; desire for children is strong; in a context of poverty, separation is economically disadvantageous; divorced women are expected to return to their parents and to return the dowry received from their husband’s family.
As such, their findings will not necessarily be generalisable to other settings.
But they note that partnered relationships provide potential support for PrEP adherence. By contrast, other studies of post-exposure prophylaxis have recruited individuals who were not generally in stable relationships. Single women and men who have sex with men may be socially and economically vulnerable. They may not know the HIV status of their sexual partners. Moreover, they may not include them in their adherence efforts, perhaps concealing pills to avoid the impression of taking drugs to treat HIV infection.
Ware NC et al. What’s Love Got to Do With It? Explaining Adherence to Oral Antiretroviral Pre-exposure Prophylaxis (PrEP) for HIV Serodiscordant Couples. Journal of Acquired Immunity Deficiency Syndromes, article published online ahead of print 2012, doi: 10.1097/QAI.0b013e31824a060b (view the free abstract here).