Women living with HIV are often concerned about the stigma associated with their diagnosis. Although it is often assumed by workers and public that there is somehow less stigma associated with HIV than in the early days of the epidemic this does not feel true for many women (and men) living with HIV as the following quote shows: an African woman taking part in a study on stigma and discrimination (Outsider Status) described a trip to her dentist:

“I have a dental problem and I go to this clinic, and I go there, two maybe three times. So eventually I told them about my condition. They explained that I would have to be the last appointment of the day. I have been to that room, and sat on that chair, and the same doctor examined me as before, but after I told them I was HIV-positive. So I went for the last appointment of the day last week, they covered the chair, the light, the doctors were wearing three pairs of gloves.” This stigma is a complex intertwining of several aspects: positive women can experience stigma and discrimination from health professionals (often through assumptions about health behaviour), additional stigmatisation of women who have been drug users or sex workers and positive women may themselves ‘internalise’ stigma.

The media has often represented HIV-positive women as prostitutes or mothers, in other words, potential infectors of others rather than people who have themselves been infected. Also, lesbian women have been perceived as not ‘at risk’ and therefore rarely receive mention in relation to HIV.

This burden of stigma can be amplified when a woman is a mother as she is often reluctant to disclose her status for fear that her children experience associated stigma.

There is also evidence that positive women find it more difficult than positive men to disclose their status to sexual partners. These difficulties around disclosure can make women less willing to access services and less able to receive support they need from families and friends.

A recent study looking at stigma experienced by African people and gay men with HIV showed how African people living with HIV experienced stigma and discrimination related to their HIV infection and to racism. Often racism was associated with assumptions about people’s immigration status. Positive African people are also stigmatised within the African community as HIV is often associated with sexism and homophobia. An African woman in the study describes the stigma within the African community and its effect on women needing to access services: “there was a lady who lived with me in the hotel. She was from Zimbabwe. She was a great friend of mine. I asked her, “Can’t we go to (name of African support agency) or something together.” She said, “Aye, I can’t go there. I go there, and people know me, and maybe some people from home will social exclusion me and they will know that I am HIV positive. I can’t go.” She never came."

Many voluntary sector HIV projects offer women specific groups or activities which can help support women to disclose.

Disclosing to children

Many positive women are also mothers and thus must decide how and when they might decide to disclose to their child(ren). Preventative measures which help reduce the risk of vertical (mother-to-baby) transmission are well established and, coupled with the increase in life-expectancy associated with access to ART, may lead to an increased desire to have children and a consequent increase in the number of children born to positive mothers.

Parenting, a challenge at any time, brings additional pressures for positive women who will have concerns about practical issues such as what happens if a mother becomes unwell and how will she care for her children, how to adhere to medication if it is a ‘secret’ as well as psychological issues such as guilt or concerns her children’s future. If the child is born HIV-positive there will be additional pressures associated with caring for that child.

A Dutch study (Nostlinger et al.) described how disclosure often falls to mothers as women are more likely to have care of children. There appears to be a tendency to wait until children are older (around 16 years) to disclose and, while this may be an option as people remain healthier for longer, for some mothers a decision must be made much earlier due to her own ill-health.

A small study of African mothers described factors which influence their decision to tell their children. These mothers were concerned that their children might be too young to understand or that the news might be too disturbing for them. They also wondered if there was a benefit in telling their children and were concerned about their own ability to disclose to them. One of the major influences was the perceived stigma relating to HIV infection and how this might impact on the children. However, despite these concerns, the mothers did want to disclose but hoped that they might be able to do this with the help of a professional.

For some African parents disclosure difficulties are increased as the patterns of migration mean that some children will be living with relatives in the country of origin while their parent is living in the UK.

Mothers who are preparing to disclose their status to their children will hopefully receive support from specialist workers and other women who have experience in this area. The mother can then be supported to find cultural and age appropriate materials and ways of communicating about HIV to her child(ren).

References

Outsider Status, Stigma and discrimination experienced by Gay men and Aftrican people with HIV, 2004, Sigma Reseach

Nostlinger. Families affected by HIV: parent’s and children’s characteristics and disclosure to the children, AIDS Care 16(5): 641-648