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.
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
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
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
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.
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.”
developed, sometimes escalating into violence. Some relationships came close to
fracturing under the strain.
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.
researchers call this the ‘discordance dilemma’, which was described by one
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.”
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.
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.”
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.
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.
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.”
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
“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.
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’.
partners were unco-operative, this contributed to adherence lapses. Some
interviewees lost sight of the ‘point’, temporarily ‘giving up’.
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
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.
their findings will not necessarily be generalisable to other settings.
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.