Login

The Female Experience

This article has been reprinted from Volume 9, No. 4 of HIV Australia, published by the Australian Federation of AIDS Organisations. You can access the Women and HIV: Beyond the Data issue in it's entirety here.  

Beyond the Data: Distinct Features and Experiences of Women Living with HIV in Australia

By Rachel Koelmeyer, Karalyn McDonald and Jeffrey Grierson

Introduction

In Australia, women represent a small proportion of the total population of people living with HIV. As of 31 December 2010, a total of 21,391 people were estimated to be living with a diagnosed HIV infection in Australia, of whom 1,984 (9.3%) were women. Due to Australia’s large size and moderate population, the small number of women living with HIV are widely dispersed, often isolated and almost invisible within the epidemic.

The HIV Futures studies, comprising six national cross-sectional surveys of people living with HIV in Australia, have been conducted every two to three years since 1997; the surveys are a key resource that sheds light on the experiences of women living with HIV in Australia. This article describes some of the main features of the experiences of women living with HIV in Australia, based on the HIV Futures studies and in-depth interviews with HIV-positive women conducted by Dr Karalyn McDonald. The article focuses on areas in which women have been found to have a different experience of living with HIV, when compared with the predominant group of HIV-positive people in Australia – homosexually active men.

Characteristics of women living with HIV in Australia

In 2009, the median age of women living with HIV was 43.5 years (range: 21 to 74 years). 

Most survey respondents reported their sexuality as heterosexual (85.9%) and just over half (52.9%) reported being in a regular relationship—a third of whom also reported that their partner is HIV-positive.

Women living with HIV reside in all states and territories in Australia; however, the vast majority live in New South Wales, Victoria, Queensland and Western Australia (90.8%). Women living with HIV are more likely than gay/bisexual men living with HIV to reside in outer suburban or regional locations.

While just over half of HIV-positive women (52.0%) report being in paid employment, an alarming number are estimated to be living below the poverty line (49.6%).

The vast majority of women living with HIV report contracting HIV through heterosexual sexual contact; injecting drug use and receipt of infected blood products are the other most common means through which women living with HIV report becoming HIV-positive.

The median age of women at the time of their HIV diagnosis is 30 years. At the time of testing positive, the predominant reasons why women underwent HIV testing were: becoming ill (30.2%), because their partner tested positive (17.1%), or due to a particular risk episode (12.9%). Women are more likely than homosexually active men to be diagnosed late, when their CD4 cell count is <200 cells/μL.

Importance of motherhood and reproductive health issues

Over time, parenthood and family have ranked consistently highly as important components of identity in women living with HIV, much more so than the role that being HIV-positive plays in the these women’s lives.

Given that most women are diagnosed with HIV during their reproductive years, a positive HIV diagnosis has extensive ramifications for self-perceptions of life and the wellbeing of a woman’s existing and future children (should she wish to have them).

HIV-positive women have the double burden of confronting threats to their own health and deciding what is best for their children, and both of these considerations are framed by the medical discourse of HIV. A positive HIV diagnosis also poses dilemmas for the women’s clinicians in managing the best interests of women and infants.

that despite a positive diagnosis being an overwhelming and devastating experience, the identity of motherhood was able to be sustained for most women. For women who were not yet mothers, although a positive diagnosis could initially shatter dreams of motherhood, it could also reinforce the idea of motherhood as an integral part of their future.

An HIV-positive diagnosis for women who were already mothers was usually accompanied by a great deal of anxiety, pain and loss; women diagnosed during pregnancy not only had to grapple with the magnitude of this news, but also make important and life-altering decisions about their pregnancy.

Ultimately, most of the women who were not mothers when they were diagnosed were able to plan for a future that included children. For many, time played a crucial role in this process, as they revised their imagined life trajectory from one of imminent death to a life that could include children and hope for the future.

Minimising the focus on HIV was important to many of these women as they described having children and becoming a mother, as representations of a ‘normal’ life.

Factors that influenced the women to pursue or consider motherhood after the PACTG 076 protocol (a treatment regimen to reduce the risk of mother-to-child transmission [MTCT]) usually included clinical markers (used to determine the disease progression of HIV within an individual), antiretroviral treatments and other medical intervention in the prevention of MTCT transmission.

More than 10 years on, information about having children and women’s reproductive health remains an important feature of service provision for HIV-positive women.

Attitude towards treatment

Earlier in the epidemic, it was noted that women were generally more sceptical than men about the benefits of antiretroviral treatments. Futures survey data from 1997 and 1999 found that women were less likely than men to be using antiretroviral treatment and less likely to believe that antiretroviral treatments meant better prospects for people living with HIV.

However, by 2009, over three-quarters of women living with HIV (77.7%) were taking antiretroviral treatment and a greater proportion believed that treatments meant better prospects for HIV-positive people, even though women remained more likely than men to believe that combination antiretroviral drugs are harmful.

In part, it is likely that these women’s attitudes were influenced by the lack of support from a large ‘HIV community’ that is often a support mechanism experienced by gay HIV-positive men. In the past there has also been a dearth of information available about treatments and side-effects that are specific to the female body.

Service use

Women living with HIV demonstrate a different pattern of service use to gay/bisexual men living with HIV.

Women are more likely to see an HIVspecialist for their HIV treatment and a non-HIV general practitioner for their general medical treatment; in contrast, gay/bisexual men living with HIV are more likely to see an HIV s100 general practitioner for their HIV treatment and general medical treatment.

The differences in service use can be partly explained by the differences in the areas where women and gay/bisexual men living with HIV reside; however, it also appears to reflect a difference in service preferences and suitability.

Experience of discrimination and unwanted disclosure

Women remain more likely than men to report unwanted disclosure of their HIV status and the experience of health service discrimination. In 2009, 73.6% of women living with HIV reported unwanted disclosure of their HIV status at some point; for 31.2% overall, this unwanted disclosure occurred in the last two years. Similarly, 47.1% of women living with HIV reported experiencing less favourable treatment at health services, with just over half of these women (25.7% overall) experiencing such discrimination in the last two years. Health workers have been reported to play a role in both the experience of unwanted disclosure and health service discrimination. 

A number of factors have been postulated as explanations to the greater proportion of women who experience health service discrimination. These include greater contact with mainstream services, greater need to access health services, women’s biological and social role as mothers, women’s social status and injecting drug use practices.

Looking forward: what still needs to be addressed?

The availability of effective treatments to prevent mother-to-child transmission and access to reproductive technologies for people living with HIV has allowed a number of women living with HIV to fulfil their dreams of motherhood.

However, HIV-positive women are more burdened by unwanted disclosure and health service discrimination than HIV-positive men, and also experience immense financial difficulties.

Factors leading to increased stigma and discrimination and unwanted disclosure for women living with HIV need to be addressed, as does the financial situation of women living with HIV. The HIV Futures 7 study, currently underway, will provide up-to-date information to inform future efforts to address factors such as these.

Gender differences in the experience of living with HIV need to remain on the agenda, particularly in relation to current issues such as ageing with HIV.