South African couples living with HIV are missing out on safer conception advice
Clinicians and counsellors may understand the right of people living with HIV to have children, but that doesn’t always mean they agree with their choices, according to new research that shows health workers may not be prepared to offer patients and couples living with HIV the best counselling on conception.
Research conducted among 25 doctors, nurses and counsellors at two antiretroviral (ARV) clinics in greater Durban, South Africa, has found that although clinicians and counsellors recognised HIV-positive people's reproductive rights, health workers are not proactively engaging with patients on reproductive health needs and tended to moralise about the choice to have children, for a wide range of reasons. According to Deborah Mindry of the University of California Los Angeles’ Centre for Culture and Health, her study’s results point to a need for training for service providers and more research into safer conception options for resource-poor settings.
“With increased availability of ARV treatment, men and women with HIV are living longer and healthier lives,” said Mindry, speaking at the 2nd International HIV Social Sciences and Humanities Conference in Paris this week. “Many of these men and women are of reproductive age and are either having children or certainly are expressing desires to have children.”
With the world’s largest ARV programme, South Africa currently has more than 1.7 million people on ARVs and indications are that these people are living longer.
Studies conducted in the country have found that as many as half of all people living with HIV would like to have children, but only about 20% of HIV-positive women and 6% of men reported discussing these desires with healthcare providers.
In June 2011, Dr Linda-Gail Bekker of South Africa’s Desmond Tutu HIV Foundation and colleagues published guidelines on safer conception for couples in which one or both partners are living with HIV. The guidelines outline several options for safer conception, depending on who in the relationship is living with HIV and stress that the starting point for clinicians is regular discussion with patients.
Patients and choices
However, two years on, these guidelines haven’t been officially adopted and service providers and healthcare workers aren’t talking to patients about their options – instead they are waiting until their patients – generally female – approach them.
According to Mindry’s research, which was conducted in one rural and one urban clinic, women living with HIV from urban areas were more likely to ask about conception options. Most people who knew about safer conception options had heard about them on television, rather than from clinicians.
Healthcare workers sometimes discouraged patients for a variety of reasons including marital or socioeconomic statuses, according to the research.
“I normally talk to them like a health educator and then talk again as a mother …look at all the reasons why they would want to be pregnant,” said one nurse in rural clinic surveyed by Mindry. “Like somebody who is unmarried or a single person and they want to have a child, I talk to them and discuss…maybe they end up seeing the importance of waiting for the right time to have a baby.”
However, ultimately all of the healthcare workers surveyed by Mindry recognised that it was a patient’s right to choose whether or not to have a child.
“We, as counsellors, we were not taught to decide; what we do is to give facts, and we ask those questions,” said one counsellor surveyed in the research. “Then a client is able to tell you their story, but we can’t judge and we cannot say you can’t, but we give options and make sure that the patient is given all the information she needs.”
Mindry also found that providers were more likely to support a patient having a first child than they were to support patients who already have multiple children, citing concerns for the children’s health. This suggest that providers may need training not only on biomedical options for safer conception and catering for the emotional needs of serodiscordant couples around disclosure, but also about how to separate their own moral judgements from their work as healthcare workers.
While sperm washing is available in the South African private sector, it remains too costly for most in the country. Therefore, Mindry also called for research into how to make this safer conception tool less expensive and more available, as well as additional research on how to cater for infertility among couples living with HIV from resource-poor settings.
Mindry D et al. Providers balancing reproductive rights, needs, and safer conception knowledge. 2nd International HIV Social Science and Humanities Conference, Paris, session CS51, 2013. View the abstract and download the presentation slides on the conference website.
What HIV self-testing may mean for couples
A study in Malawi is offering glimpses into why couples opt for HIV self-testing – including issues of trust and honesty – and what it may mean for their relationships. Moses Kumwenda from the Malawi-Liverpool Wellcome Trust Clinical Research Programme presented findings at the recent 2nd International Conference for the Social Sciences and Humanities in HIV in Paris.
Self-testing for HIV, using the OraQuick oral HIV antibody test, has been found highly acceptable in Malawi and other countries. This option, in which people carry out the test themselves without a third party present, may overcome barriers such as the need to attend a health facility for testing, or fears of breaches of confidentiality. In Malawi, it has also been shown to increase the uptake of HIV treatment.
Launched in 2012, the Hit TB Hard study in Malawi investigates whether intensified tuberculosis (TB) case finding can curb new TB cases. As part of this five-year cluster randomised trial, HIV self-testing is offered in half of the trial’s 28 clusters in order to facilitate targeted HIV/TB prevention.
To evaluate the impact of self-testing on care-seeking and couples’ relationships, researchers kept in touch with 66 people, including seven serodiscordant couples, for a year after they had had an HIV self-test.
The researchers found that participants opted for self-testing for a number of reasons, including risk behaviour, mistrust within the couple, and a desire to either confirm an earlier HIV test result or check the effectiveness of local 'faith healing'. Some individuals used self-testing as an opportunity to disclose a previously known HIV status:
“We were not using condoms because I had not told my wife that I am positive. We were living normally as a family because she did not know and I was so afraid to tell her.”
Couples struggled immediately after results to deal with feelings of blame and disbelief, with men in particular being less willing to accept results. This led some couples to re-test, as advised by both researchers and the OraQuick self-testing kits, but also prompted others to incorrectly assume that HIV discordance within longstanding relationships indicated resistance to infection among partners who had remained HIV negative.
“I told him that we should use condoms,” reported one woman who had tested negative for HIV while her husband was HIV positive. “He told me, ‘why is it that all this time you have not been infected? We should live the way we have been living.’”
Men, who accounted for 44% of all those opting for self-testing as part of the trial, generally had a harder time accepting the need to practice safer sex than women. The study found that, while self-testing increased the ability of HIV-negative partners within discordant couples to negotiate condom use in the short term, men largely wanted to continue practicing unsafe sex.
“We found that within discordant couples – regardless of which partner was HIV-positive – males still preferred unprotected sex while women were more concerned about preventing HIV transmission,” Kumwenda said. “Some women reported trying to protect their marriages and the respect that they enjoyed in the community by accepting whatever their husband was telling them to do.”
One HIV-negative woman said:
“When you say no to unprotected sex, he would ask you ‘where should I go to have sex?’ I married you to be my wife.”
Social norms regarding definitions of a “good wife”, including the need to sexually satisfy their partners and to bear children, were cited as some of the reasons that women continued to be coerced into unsafe sex – as were local beliefs that unprotected sex during pregnancy was important to infant development.
While couples also reported experiencing fears regarding the future of their relationships after self-testing, most couples were still together a year after learning of their HIV statuses. Separation and physical violence were only reported in one couple with a pre-existing history of domestic violence.
Preliminary results suggest that, while HIV self-testing may not introduce violence into relationships, it may exacerbate it in relationships in which it already exists. This may indicate a need for relationship counselling within HIV testing.
“There needs to be specialised counselling,” Kumwenda said. “As testing is designed now, there is only pre- and post-test counselling but there is nothing to assist couples who already have issues.”
Dr Nicola Desmond, also with the Malawi-Liverpool Wellcome Trust programme, said that a larger study into the relationship between gender-based violence and self-testing involving 300 participants is ongoing.
Making the move to self-testing
The study comes as the World Health Organization works to develop guidelines on HIV self-testing following the first-ever WHO meeting on the subject in April 2013.
South Africa, Kenya and Malawi are currently considering adopting HIV self-testing to reach pockets that current testing campaigns continue to miss, according to Nicola Desmond.
“In Malawi, I think there’s the realisation that HIV testing uptake is ‘pocketed’ in the sense that there are certain groups being missed either for initial or repeat testing,” she said. “In Malawi, we have HIV testing campaigns once a year with door-to-door and mobile testing services but there are a lot of people who are being missed.”
“We know that self-testing addresses (concerns) of convenience and confidentiality and that these are some of the key things that make testing attractive,” she added.
Kumwenda M et al. Complex sexual behaviour among discordant couples after home HIV self-testing. 2nd International Conference for the Social Science and Humanities in HIV, Paris, session CS51, 2013. (View the abstract and download presentation slides on the conference website.)
Desmond N. The social and ethical dimensions of introducing HIV self-testing technologies. 2nd International Conference for the Social Science and Humanities in HIV, Paris, session CS51, 2013. (View the abstract and download presentation slides on the conference website.)
Medical male circumcision campaigns face cultural challenges in southern Africa
Campaigns to circumcise tens of thousands of men in southern Africa are falling victim to lingering acceptability issues six years after the procedure was first recommended to help prevent HIV infection, according to speakers at the 2nd International Conference for the Social Sciences and Humanities in HIV in Paris last week.
The World Health Organization (WHO) and UNAIDS began recommending medical male circumcision as an HIV prevention tool in 2007, following three large-scale randomised clinical trials. Conducted in Kenya, South Africa and Uganda, these trials found that medical male circumcision reduced a man’s risk of contracting HIV by about 60%. Following international recommendations, high HIV-prevalence countries in both east and southern Africa announced plans for large-scale circumcision campaigns.
Now researchers say campaigns in Swaziland, Botswana and Malawi are failing due to concerns from men, communities and countries about whether medical male circumcision is appropriate for them.
Programmes have paid insufficient attention to the social meaning of circumcision in different settings
Social scientists at the Paris meeting argued that those implementing medical male circumcision had paid insufficient attention to the social meaning of circumcision in different settings (it is often a marker of ethnic or religious difference, or associated with a particular form of masculinity). While there is evidence that the intervention has efficacy (in ideal conditions), it will only be effective (in real-world settings) in certain circumstances, when contextual factors including social networks, political debates and cultural values are favourable.
Biomedical researchers had “divorced any sort of understanding of the efficacy of these tools from how they operate in real people’s lives”, said Richard Parker of Columbia University. “That’s what’s missing from the evidence,” he said, arguing for more social science research to shed light on the issue.
Threats to masculinity, tradition and sovereignty
In Swaziland, about one-quarter of all people between the ages of 15 and 49 are estimated to be living with HIV. With the world’s highest HIV-prevalence rate, Swaziland was an early adopter of WHO recommendations. In 2009, the country developed plans to circumcise 150,000 males within two years. But by 2011, the country had only met about 12% of this target, according to Alfred Khehla Adams of the Universiteit van Amsterdam.
To find out why circumcision had been so unpopular among Swazi men, Adams interviewed men in the Kwaluseni district of Manzini, Swaziland through a mix of focus group discussions and interviews. He found that because men feared reduced sexual pleasure and possible adverse effects, Swazi men felt the procedure threatened their notions of manhood.
“A real Swazi man is defined as someone who has a wife and children, and is able to take care of family,” Adams told the conference. “In order to have a wife and children, a man has to be sexually functional – the issue of circumcision introduced a threat to this.”
Nonetheless, the three large randomised clinical trials found that only a small percentage, between 1.5 and 3.8%, of circumcisions resulted in complications such as wounds or swelling.
Men also reported that they did not see the value in medical male circumcision when continued condom use was still advised following the procedure.
“They tell you to circumcise and also use condoms, why?” said one uncircumcised man during a focus group. “This thing is not 100% effective so why don’t you just leave the circumcision thing and condomise?”
Research from Botswana also points to lingering acceptability issues in the country, which in 2009 committed to medically circumcise 100,000 men each year. In 2012, the country was able to circumcise about 40,000 men, falling short of the targets that it is under pressure from the World Health Organization to meet, according to Masego Thamuku of the University of Bergen.
Conducting research in Mochudi, Botswana, Thamuku found that national circumcision campaigns that were initially well received by traditional leaders and communities had fallen out of favour. This was largely due to the way campaigns have been publicised and carried out among Tswana communities that already practice traditional circumcision via traditional initiation schools.
Public campaigns breached notions of privacy and secrecy attached to traditional circumcision
“In 2009, three cohorts of initiation schools were brought into the clinic to be circumcised,” said Thamuku during her presentation at the Paris conference. “In 2011, everything turned all around – the public campaigns had breached traditional privacy.”
Not only had campaigns using radio and public events, as well as female nurses, breached notions of privacy and secrecy attached to traditional circumcision, but also they were seen to have eroded the kind of kinship fostered by traditional schools in which men learned the rules of manhood as part of a rite of passage. Following from this, Thamuku’s interviews with men and implementers of circumcision revealed that there were doubts in the community as to whether medically circumcised men could be seen as “real men” alongside those who had been traditionally cut.
Justin Parkhurst of the London School of Hygiene and Tropical Medicine suggested that the government of Malawi had actively resisted international pressure to implement a prevention method imposed on it by donors.
While medical male circumcision is usually framed as a technical issue, Parkhurst said that it could be deeply political. In Malawi, information about circumcision was understood in the context of tensions between Christians and Muslims. Local knowledge – such as higher HIV prevalence in regions with high traditional circumcision rates – was privileged and the findings of international researchers questioned. Resistance to circumcision became part of a broader challenge to the country’s dependence on Western aid.
AIDS experts’ ambivalence
But while most speakers suggested that public health experts and international organisations had been unquestioningly enthusiastic about medical male circumcision, a very different analysis came from Ann Swidler of the University of California.
In her view, the attitude was much more awkward and ambivalent. Examining a key WHO and UNAIDS document from 2007, she found the authors reluctant to accept the overwhelming scientific evidence, with the document full of caveats. The document insists that circumcision should be provided alongside a comprehensive package of HIV prevention interventions. Swidler argued that this obscures the fact that male circumcision has a proven efficacy whereas existing interventions such as voluntary counselling and testing or programmes to promote and distribute condoms do not.
“The lack of enthusiasm for male circumcision has to do with the fact that it doesn't push any of our buttons” Ann Swidler
One reason for the reluctance around circumcision, she said, is that it touches on cultural sensitivities and anxieties, including those around about neo-colonial relationships between Europeans and North Americans, on the one hand, and Africans on the other.
But it goes beyond this. The empowerment struggles of women and gay men, as well as a broader aspiration to individual autonomy and self-determination in many contemporary societies, have powerfully shaped the "moral imagination" of people working on the response to HIV and AIDS, she argued.
“The lack of enthusiasm for male circumcision has to do with the fact that it doesn't push any of our buttons,” she said. The intervention does not require sustained behaviour change or a transformation of gender relations. “We don't have to train people; we don't have to teach them to be different kinds of human beings,” she said.
Adams A, Moyer E Sex is never the same: men’s perspectives on refusing circumcision in Swaziland. 2nd International HIV Social Science and Humanities Conference, Paris, session CS13, 2013. View the abstract on the conference website.
Thamuku M, Daniel M Safe male circumcision in Botswana: where are the men? 2nd International HIV Social Science and Humanities Conference, Paris, session CS34, 2013. View the abstract on the conference website.
Parkhurst J et al. Doubt, defiance, and identity: resistance to male circumcision policy in Africa. 2nd International HIV Social Science and Humanities Conference, Paris, session CS26, 2013. View the abstract and download the presentation slides on the conference website.
Swidler A AIDS and the moral imagination. 2nd International HIV Social Science and Humanities Conference, Paris, plenary P4, 2013.