By Christy Newman, Maria Bonar, Sandra Thompson, Heath Greville, Dawn Bessarab and Susan Kippax

In 2003, a qualitative social research project was conducted with HIV positive Aboriginal people living in urban and rural areas of Western Australia. The project was the first of its kind, and aimed to provide Aboriginal people with an opportunity to tell their stories about living with HIV. The interviews explored issues such as diagnosis, disclosure, discrimination, access to services and the social and economic impact of HIV. This article focuses on how HIV affects the capacity of Aboriginal people to fulfil the expected cultural ‘markers’ of gender and heterosexuality in their communities, namely relationships and children.

The research, funded by the Office of Aboriginal and Torres Strait Islander Health and the Department of Health in Western Australia, was developed and conducted in partnership with Aboriginal people who are HIV positive as well as the Aboriginal health providers who work with them ^[1]. Twenty people took part, representing almost half the total number of Aboriginal people known to be living with HIV in Western Australia at the end of 2002.

The study found that Aboriginal people who are HIV positive share many of the same experiences as other people living with HIV in Australia. However, they face some additional challenges in relation to financial hardship and lack of employment opportunities, social and geographic isolation, and living in small rural and remote communities.

Sixteen women and four men were interviewed, aged between 22 and 54. Four lived in metropolitan areas, and the rest in rural or regional parts of Western Australia. Two of the men believed they had contracted HIV through male sexual contact, and the remaining two men and sixteen women reported heterosexual modes of transmission. Many of the participants described shock and disbelief when initially diagnosed with HIV, reflecting a broader lack of awareness of HIV in the Aboriginal communities involved in this study. Many participants felt shame about their HIV status, and had disclosed to only a few people. Others had experienced discrimination from family, friends and some health service providers. This lack of awareness and understanding of the risk and impact of HIV in Aboriginal communities provides some of the context for the stories about HIV and heterosexuality described in this article.

The Aboriginal members of the project Steering Committee and Reference Group advised that in some Aboriginal communities the phrase ‘people living with HIV/AIDS’ could be understood to include the carers and families of individuals infected with HIV. Therefore, the phrase ‘Aboriginal people who are HIV positive’ is used wherever possible. Also, while Indigenous Australians are represented by both Aboriginal and Torres Strait Islander peoples, no Torres Strait Islander people were involved in this project. Participants’ real names have been changed to protect their privacy.

Relationships

Many of the heterosexual people who took part in this study believed it was important to be part of a regular, committed, sexual relationship. One third of these were involved in an ongoing relationship at the time of the study, however, most felt their positive status made it hard to initiate or maintain regular relationships of this kind. Participants described a fear of rejection, difficulty in persuading a new partner to use condoms, and concern about the consequences of disclosing HIV status or being identified as HIV positive by requesting condom use. Several participants were concerned about being referred to the Case Management Program for knowingly exposing a sexual partner to infection. In Western Australia it is Department of Health policy for the Case Management Program to provide intensive education, counselling and support to any HIV positive individual who knowingly places others at risk of infection [2]. This is done in an effort to alter risk behaviour and lower infection rates. In smaller communities, where the Case Management Program has worked closely with many of the participants in this research project, there is a perception that this places constraints on their behaviour, privacy and other individual freedoms.

Of the six women who were in regular relationships at the time of interview, one had a partner known to be HIV positive, and the other participants’ partners had either repeatedly tested negative, or their status was unknown. Carmen, who had been living with HIV for eight years at the time of interview, described some of the challenges she has faced in negotiating disclosure and condom use since her diagnosis:

Like for all HIV womans and mans, like if you are in a relationship you have to tell that person … And it does make it hard for you to even socialise with other mans. Like I said, in a community what we have got, a lot of people they can say ‘Oh look who she’s with’ … And you could just be sittin’ down and drinkin’ with them … Or some mans, they say, ‘Oh why you usin’ condoms for?’ you know, like that. Like just make it fun and I say, ‘Oh you don’t know what you might get these days, eh?’ Just sort of go along with them.

None of the couples in ongoing relationships reported using condoms. While for some this was because they wanted children, others were wary of using condoms in a monogamous relationship because it could imply infidelity. For example, Jayme had been living with HIV for around nine years, and was with her current partner for eight of those years. When Jayme asked him to wear condoms, he replied ‘Are you seeing someone else behind my back?’

Neither of the two heterosexual men that took part in the study was in a regular relationship at the time of interview. Ross, who had been living with HIV for less than a year, felt it would be easier to form a new relationship with a woman who was also HIV positive:

Oh, it’s hard. I can’t see it happening now…You can’t go up to a girl and say, ‘I’ve got HIV, you know, want to go out with me?’ (Laughs) No … Unless she’s HIV positive as well, so until that happens or if it ever happens, I don’t know. If I met a girl that’s HIV, I would get to know her, yeah.

Ten of the sixteen women in the study were single at the time of interview. One of these women had recently separated from her de facto husband, who was also HIV positive. She was considering returning to that relationship because she felt it would be too hard to form a new one. However, some of the single women did not want a new relationship. Krysta had been living with HIV for seven years, and she made a point of saying that although men ask her out all the time she generally says no, because she doesn’t feel like it. Or as Carole, who had been living with HIV for less than a year, puts it, ‘I wouldn’t want to start a new relationship. No, I’d rather be on my own, with my boys.’

Children

Zubrick et al write that ‘Children have always been regarded as precious and central to Aboriginal society’ [3: p.xii]. Accordingly, most of the participants in this study either had or wanted to have children. Many of the women had given birth to children while in their teens or early twenties, reflecting the comparatively young maternal age of many Aboriginal mothers in Australia [4: p.75]. One of the two heterosexual male participants had children, and the other expressed a desire for children, although he was single at the time of interview. One of the three women who did not have children found it difficult to form new relationships since diagnosis. Another had lost a child shortly after birth, many years before she was diagnosed with HIV, and was past childbearing age at the time of interview. The third, Pauline, had been living with HIV for nine years at the time of interview, and had been trying to have a child for several years:

I’m still lookin’ forward to gettin’ pregnant. I got tested for it, to see if the tubes are open or whatever. I gotta wait for the next gynae appointment for the result. I wanted a baby for a long time.

Four of the thirteen women in this study who had children were pregnant at the time of their HIV diagnosis. Three of these pregnancies resulted in live births, but Carmen, who was pregnant at the time of her diagnosis in the mid 1990s, was advised to have an immediate termination and tubal ligation, a recommendation that was common in the early years of the HIV epidemic, but one that has since been abandoned. In her interview Carmen said she had inquired about having the tubal ligation reversed, but was informed she would have to pay the cost of this privately as it would not be covered by Medicare. Subsequent to this research project, Carmen had her tubal ligation reversed through the support of her local health service and a sympathetic gynaecologist.

All of the women in this study were prescribed antiretroviral treatments during pregnancy. Their babies were also prescribed these medications for the first six weeks of life, and they were all bottle-fed. Although none of the babies contracted HIV, bottle feeding sometimes prompted questions from friends, family and others in the communities in which these young mothers were living. Shona had been living with HIV for around five years at the time of interview. When asked if bottle-feeding her baby had made any difference, she said:

Yeah it did. Like my friends askin’, ‘Why don’t you give the titty?’ I say ‘My nipples are small’. Or, ‘Look I am going to be drinkin’, not a lot, but drinkin’ now and then, so I’ll put them on the bottle then I know it will be right for baby,’ yeah.

Many Aboriginal women prefer to breastfeed if they can [5], which means they may face questions if they don’t. For Aboriginal women who are HIV positive, this can mean having to lie to avoid disclosing their HIV status.

Conclusion

The stories in this project suggest HIV makes it difficult to fulfil the expected cultural ‘markers’ of gender and heterosexuality in Aboriginal contexts. HIV is described by both men and women as a complicating factor in forming regular, committed, sexual relationships, and negotiating safer sex practices. This causes shame and sadness for some, because it is at odds with family and community expectations to develop and maintain a regular relationship. The stories from this project also suggest that the opportunity to have children is very important for many heterosexual Aboriginal people who are HIV positive. While most of the women interviewed for this project did have children, others found that HIV created social barriers to fertility including difficulties in initiating and maintaining regular relationships and in one case, an unwanted tubal ligation. Not being able to breastfeed can also cause social problems for new mothers, as bottle-feeding does not always fit with family and community expectations about how to care for a new baby. A broad conclusion that can be drawn is that Aboriginal community contexts can make it particularly difficult for Aboriginal people who are HIV positive to find new ways of negotiating positive and nurturing relationships while living and coping with HIV. This may be especially the case for those living in small isolated communities where social visibility is high, privacy is limited, and community, family, children and relationships are integral to both public and private identity.

References

1. Bonar M, Greville HS, Thompson SC (2004) Just gettin’ on with my life without thinkin’ about it: The experiences of Aboriginal people in Western Australian who are HIV positive. Perth: Department of Health, Government of Western Australia. Available at: http://www.population.health.wa.gov.au/

2. Population Health (2006) Communicable Disease Control: Case Management. Perth: Department of Health, Government of Western Australia. Available at: http://www.population.health.wa.gov.au/Communicable/case_management.cfm

3. Zubrick S, Lawrence D, Silburn S, Blair E, Milroy H, Wilkes T, et al. (2004) The Western Australian Aboriginal Child Health Survey: The Health of Aboriginal Children and Young People. Perth: Telethon Institute for Child Health Research. Available at: http://www.ichr.uwa.edu.au/waachs/publications/volume_one.lasso

4. ABS and AIHW (2005) The Health and Welfare of Australia's Aboriginal and Torres Strait Islander Peoples. Canberra: Australian Bureau of Statistics and the Australian Institute for Health and Welfare. Available at: http://www.aihw.gov.au/publications/index.cfm/title/10172

5. Holmes W, Thorpe L, Phillips J (1997) Influences on infant-feeding beliefs and practices in an urban Aboriginal community. Australian and New Zealand Journal of Public Health 21(5), 504–511.

Christy Newman is a Research Fellow at the National Centre in HIV Social Research, UNSW, Maria Bona works with the WA Ministry of Justice, Sandra Thompson is the Associate Professor at Curtin University’s Centre for International Health, Heath Greville works at the Curtin University Indigenous Research Centre, Dawn Bessarab works with WA’s Department of Justice, and Susan Kippax is the Director, National Centre in HIV Social Research, UNSW.

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