African people in the UK who are involved in a serodiscordant relationship (where one person has HIV and the other does not) have a wide range of experiences, according to a new study from Sigma Research. Nonetheless, two recurrent themes are uncertainty and disempowerment.
Many people in such relationships remain uncertain of their ability to have children or to have sex without HIV transmission occurring, and generally lack information on alternatives to condoms. More generally, many were uncertain about their future and the long-term viability of their relationship.
Driven by a fear of rejection or abandonment, some of the partners who had HIV seemed to occupy a position of limited power within their relationship. HIV-positive women tended to be especially disempowered.
Relationships where one person has HIV and the other does not are often described as being ‘serodiscordant’ or ‘serodifferent’. Whereas in-depth, qualitative studies of serodiscordant relationships have previously been conducted with gay men, the experiences of African people living in the UK have not previously been explored.
For this study, the researchers employed a community-participatory approach in which a team of black African people were recruited from HIV community-based organisations and trained in interview and research skills.
Sixty black African adults were interviewed for the study. Most of the respondents (44 individuals) were diagnosed with HIV, and either described their current relationship with an HIV-negative or untested partner, or a previous relationship which had ended. It was much harder to recruit the 16 respondents who did not have HIV and who described their relationship with an HIV-positive partner.
Two-thirds of the respondents were women and their average age was 40. The majority came from either Zimbabwe, Uganda, Nigeria or Zambia and they had been in the UK for an average of eleven years. Less than a fifth were in full-time employment.
The HIV-positive respondents generally wanted to tell their partner of their HIV status, as they wanted to be ‘honest’ and felt that it would be difficult to develop trust and commitment otherwise. On the other hand, many respondents with HIV who had disclosed described experiences of verbal abuse, instant rejection, threats of criminal prosecution and loss of contact with their children.
With such risks in mind, one fifth of the positive participants had not told their primary sexual partner of their status at the time of the interview. However each of these respondents felt that non-disclosure was having a significant negative impact on their relationship. One man said:
“I really have not been strong enough to open up to her. It’s a strange feeling, a bit like I am stealing something. You know, you are holding something back.”
Receiving the news that their partner had HIV was incredibly hard for many of the negative or untested participants to hear. They often assumed that they would have HIV too. One woman said:
“My first thought was, all right, I’m going to die. I’m going to die. And then I was like, he’s going to die, I’m going to die, who’s going to look after my son?”
For those negative partners who did continue with the relationship, fears about HIV transmission were often an immediate and paramount concern. Around a third of them described rigorous and unnecessary cleaning habits, for example of shared toilets. One HIV-negative woman said that in a serodiscordant relationship you “become a spy on your own life” because of the constant surveillance of supposed transmission risks.
For well over a third of participants, sexual contact stopped altogether for a period after diagnosis or disclosure. This abstinence could last weeks, months or years, sometimes until the end of the relationship.
When sex resumed, the fear of transmission often hindered enjoyment.
“We used to have sex more, mostly daily but now maybe once in two weeks and every time I will be having sex with her I will be thinking has the condom burst or has something gone wrong. I’m not enjoying it in terms of what I used to.”
Two-thirds of participants used male condoms, with most saying they used them each time they had penetrative sex. Nonetheless a third of participants talked about problems with condoms, such as discomfort, reduced intimacy, and erectile dysfunction.
But there was often limited awareness of the existence of condoms of different sizes or thicknesses, or of female condoms. Similarly, two-thirds of participants lacked understanding of how post-exposure prophylaxis works and how to access it.
In relation to antiretroviral treatment and an undetectable viral load reducing the risk of HIV transmission, around a half were aware of the idea, but most were either uncomfortable or suspicious of it. Some individuals lacked the scientific understanding to make sense of the concept; many of the participants had a firm faith in condoms.
“If your viral load is undetectable it’s a low risk for you transmit. But I think if the HIV is in your system it’s a risk, and if you have it [sex] unprotected with anybody you’re going to get it.”
A number of the female participants resented the disruption that ‘treatment as prevention’ could cause the strict condom use policies they had negotiated with their male partners. Once their partner knew about the notion of treatment as prevention, this could threaten their own power to insist on condoms.
While the desire to have children was strong among the interviewees, very few considered ‘treatment as prevention’ as something that could help them achieve this. Many interviewees questioned whether it would be possible to have an HIV-free child, and this doubt contributed to concerns about the sustainability of their relationships.
Participants often did not know of other couples in similar situations, and the lack of visible role-models could make a future together more difficult to imagine. Around a quarter of those with diagnosed HIV expressed the belief that their partner would soon leave them for someone who did not have HIV. Some felt that their partner deserved someone without HIV.
“I felt like my partner, since I was positive, felt like she should have someone else who was not positive, not me who is positive. I was feeling that, OK, how is, I did not see it being possible for us to live together, one being positive and one negative.”
A fear of abandonment sometimes led people with HIV to accept problems in a relationship, without complaint. The researchers note that this tendency was especially pronounced among their female respondents, one of whom said:
“I think we tend to try a lot more and maybe stay in bad relationships because you think at least it is acceptable, he has accepted my status.”
Participants with diagnosed HIV sometimes described how attempts to question or disagree with their partner were met with cold reminders of their status and an implicit suggestion that they had no right or power to change the situation. Some participants described emotional or psychological abuse, including threats of disclosure or the withdrawal of financial support.
A number of the HIV-positive partners, especially the women, found it difficult to engage their partners in discussions about HIV or the relationship. When partners refused to discuss these issues at all, the uncertainty about their feelings and intentions was disempowering.
Moreover around half the interviewees described managing transmission risk in a way that suggested that responsibility rested entirely with one partner. It was usually the HIV-positive partner who felt that it was their duty to make sure HIV was not transmitted, often in the absence of consistent concern from their partner. One woman said:
“I mean I have talked to him, and I have talked to him and I have said well we should because I don’t want to pass it on to him, but he is persistent that he is not willing to use protection.”
On the other hand, a third of participants did describe managing risk as being a shared responsibility. For example this man with HIV said:
“I have told my partner to take charge so yeah when I am hard enough I ask her to put the condom on, so this way I can say she takes part of the responsibility.”
More generally, while this summary has concentrated on some of the more difficult experiences reported to the researchers, around a third of the respondents said that they were able to deal with HIV within their relationship and that it did not have a long lasting negative impact.
A number of couples had accepted and integrated HIV as an element in their everyday lives and were apparently happy in their relationships. Dealing with difficulties through open and honest discussion had brought this couple closer together:
“There is trust now, she can trust me now. But, I think it has made me more confident as a person and she’s so much more well informed now. It’s, I think it has made us closer in our relationship. Made us so much closer because the trust is good.”
While HIV had changed the nature of nearly all the relationships the researchers looked at, many of their interviewees were keen to emphasise that HIV should not be allowed to overpower everything else in their lives or to dominate their relationship. One HIV-negative woman said:
“It was difficult the first days but now he is normal to me. I am just being my normal self. If he say yes, he says yes, if he says no he says no, because I’ve decided if I put this it will be like a third person in this relationship.”
Bourne A et al. Plus One: HIV sero-discordant relationships among black African people in England, Sigma Research, 2011. Full text available online.