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.