HIV Australia | Vol. 9 No. 2 | July 2011

AUGUSTINE ASANTE and HENRIKE KORNER report on findings from two studies into HIV and CALD communities in Sydney.

The dynamics of the HIV epidemic in Australia are changing. The number of new infections attributed to heterosexual contact has increased, and people from culturally and linguistically diverse (CALD) backgrounds – especially those from high HIV prevalence countries – account for a significant proportion of these diagnoses: 37% of new diagnoses due to heterosexual transmission in 2000–2004 and 41% in 2005–2009 were people from high HIV prevalence countries, especially from sub-Saharan Africa and South East Asia.¹ A considerable proportion of HIV diagnoses in people from CALD backgrounds are late diagnoses. For best possible treatment outcomes, early diagnosis is essential.

Recent studies of HIV in migrant communities in Europe have suggested that limited perceptions of risk as well as restricted access to health services in the adopted countries of migrants are two factors that may contribute to a rise in the number of HIV diagnoses and increasing late diagnoses.²,³ Findings from two recent studies in Sydney⁴,⁵ suggest that high levels of knowledge about HIV risk among people from CALD backgrounds in Australia (where access to health services is readily available) does not necessarily translate into greater personal protection from acquiring HIV and that HIV-related stigma among CALD communities is a major factor contributing to an increase in late diagnoses.

Two studies of Sydney CALD communities – Periodic survey of HIV knowledge, perceptions and use of health services among people from culturally and linguistically diverse (CALD) backgrounds (the CALD periodic survey)⁶ and Understanding late HIV diagnosis among people from culturally and linguistically diverse (CALD) backgrounds (the barriers to testing study)⁷ – both indicate a clear disconnection between knowledge of HIV risk and having unrestricted access to health services on the one hand, and implementing health-seeking behaviours to reduce personal risk of acquiring HIV on the other.

General knowledge about HIV/AIDS

The CALD periodic survey⁸ found that awareness of HIV was very high; over 90% of the respondents had heard about the disease and a very high proportion understood the modes of HIV transmission – including unprotected sex, sharing of needles and syringes, and mother-to-child transmission – and knew about modes of protection such as consistent use of condoms, abstinence from sex and avoidance of sharing of injecting equipment.

For a good number of participants, knowledge about HIV was not just obtained through the media or from written sources but was grounded in first-hand experience of knowing somebody living with – or directly affected by – HIV. In one study community, nearly 57% of respondents said they knew a person living with HIV/AIDS; sometimes these people were relatives or friends of the respondents.⁹ High knowledge of HIV was also evident in the barriers to testing study,¹⁰ where almost all participants knew about the disease before their diagnosis, and about a third of the participants knew someone with HIV before they were diagnosed.

Access to health services

In both studies, almost all respondents held a Medicare card: about 92% of respondents in the CALD periodic survey and 79% of the CALD participants in the barriers to testing study. The majority (64%) of the respondents in the CALD periodic survey had a regular (personal or family) doctor. This was particularly common among older respondents.

80% of people aged between 45 and 54 years old, and 86% of those aged 55 and over, had a regular doctor. However, just over half (52%) of respondents aged under 25 had a regular doctor, Finally, respondents in both studies had positive views about routine health checks. 86% of the CALD periodic survey respondents thought that routine health checks were necessary for disease prevention generally and for timely diagnosis of HIV infection.

General practitioners were usually an individual’s first point of contact with health services; about 90% of the respondents in the barriers to testing study sought health care from GPs.

Use of health services

Despite the widespread access to free or subsidised Medicare services and the positive views about having a regular doctor and routine health checks, nearly 41% of respondents in the CALD periodic survey said they used health services only about once a year or not at all, and around 47% had never seen a doctor for a routine checkup.

Similarly, in the barriers to testing study, 69% of the CALD respondents had used health services less than once a year prior to being diagnosed as HIV positive. Respondents in both studies gave varying reasons for this. In the CALD periodic survey, 55% said that a lack of time prevented them from seeking health care.

In the barriers to testing study, most respondents believed that they were healthy prior to their HIV diagnosis, and therefore did not need health services. One woman who was diagnosed during antenatal care explained: ‘Normally I didn’t get sick. I saw a doctor for the first time when I was pregnant with my second baby [in Australia]. When I had a cold I just took lemon juice.’

For those who saw a doctor because they experienced health problems, HIV was not always explored as a possible cause for the problems. For example, a heterosexual man who was diagnosed as HIV-positive at a CD4 count of just 80 explained: ‘I was sick in hospital. It took a long time before my GP suggested an HIV test. I don’t know why he didn’t think about that early enough. I lost a lot of weight, I had diarrhoea, I lost appetite but he didn’t figure out until it was almost too late for me. Any time I see him he tells me everything will be fine.’

HIV testing

In the CALD periodic survey, about 86% of respondents believed that testing for HIV was important. However, nearly half (49.7%) of all respondents had never had an HIV test. Similarly, about 72% of the CALD respondents in the barriers to testing study never had an HIV test prior to their diagnosis. It should be noted that HIV testing among the participants in both studies was not significantly lower than HIV testing rates found in the general Australian population. In the Australian Study of Health and Relationships nearly 60% of heterosexual men aged 16 to 59 had never been tested for HIV.¹¹ What was striking, however, was that in both the CALD studies, the majority of respondents who had tested for HIV at least once were tested either because they were sick in hospital, or for immigration or employment purposes, or through contact tracing. Voluntary HIV testing was rare.

Reasons for not getting tested or for delaying an HIV test had little to do with not understanding the Australian health care system or not knowing where to go for an HIV test. In fact, in both studies the majority of respondents had good knowledge of where and how to get an HIV test. What seemed to influence their decision to delay or not to seek a test was more related to individual  perceptions of HIV risk, and to the stigma associated with HIV/AIDS.

Perception of HIV risk

While many participants had good knowledge about HIV transmission and prevention and acknowledged that anybody could be infected, many did not see themselves to be at risk. They saw HIV as a distant reality which affected others but which did not apply to them personally.

Therefore, in the barriers to testing study, even when participants experienced possible HIV-related symptoms, they explained these in the context of their everyday lives and did not connect them to HIV: ‘I had no idea I have HIV because I have not been getting sick. When I feel tired I thought it is just because I work hard and probably don’t sleep enough.’ Others thought they were not doing anything ‘risky’ as far as HIV was concerned, and consequently, an HIV-positive result often came as a shock: ‘I never thought the result could be positive because I thought I wasn’t doing anything stupid to put myself in danger. Although I used to play around a bit when I was quite young but I never thought it could lead to something like HIV.’

HIV stigma

In the CALD periodic survey, nearly 80% of respondents had positive views about people living with HIV (PLHIV), and most disapproved of discrimination against HIV-positive people. However, despite these positive views, about 43% thought HIV-positive people bring shame to themselves and their families. Such negative perceptions were a reason for not seeking an HIV test in the barriers to testing study. For nearly 61% of CALD respondents, the shame that an HIV-positive result would bring to them and their families was a major concern. ‘Other people finding out was my biggest worry. I had to move from my house to another area after the diagnosis because a nurse at the clinic which did the diagnosis happened to be my neighbour. I sold my property and moved out because of her. I knew she’ll definitely tell her family at least.’

Conclusion and recommendations

There is a gap between accurate knowledge of HIV transmission and competence to obtain health services on the one hand, and low perceptions of individual susceptibility to HIV infection on the other hand within culturally and linguistically diverse communities in Sydney. There is also substantial stigma and discrimination against people living with HIV. People in the two studies reviewed in this article have sufficient knowledge about HIV transmission and prevention in general, but many do not find the HIV epidemic in Australia and their home country personally relevant. To bridge this gap, we recommend firstly, to encourage people from CALD  backgrounds to make better use of  existing health services. While holding  a Medicare card ensures access to  health services, people from CALD  communities are often from countries  where health services need to be paid  for and are used only in times of  seriously illness. There is a need for  education about the benefits of routine  health service use to encourage people  from CALD backgrounds to engage with preventive health care.

Secondly, HIV prevention in CALD  communities would benefit from  improved sexual health education  among GPs in these communities  to increase their confidence in  recognising and investigating  HIV-related symptoms. Finally,  social and cultural perceptions about  HIV in CALD communities, including  stigma and discrimination, continue  to negatively affect individuals’  decisions to seek an HIV test.

Mainstream education campaigns  seem to have done little to reduce HIV  stigma in these communities. There  is the need for a new and targeted  approach to addressing stigma within  CALD communities if progress is to  be made.

References

1 National Centre in HIV Epidemiology and Clinical Research (NCHECR). (2010). 'HIV, viral hepatitis and sexually transmissible infections in Australia Annual Surveillance Report 2010'. NCHECR, University of New South Wales, Sydney.

2 European Centre for Disease Prevention and Control (ECDC) (2010). 'Migrant health: Epidemiology of HIV and AIDS in migrant communities and ethnic minorities in EU/EEA countries. Technical Report.' Available at: www.ecdc.europa.eu (accessed 28 June 2011).

3 Del Amo, J., Broring, G., and Fenton, K. (2003). 'HIV health experiences among migrant Africans in Europe: How are we doing?' AIDS, 17, 2261–2263.

4 Asante, A., Körner, H., McMahon, T., Sabri, W., and Kippax, S. (2009a). 'Periodic survey of HIV knowledge, perceptions and use of health services among people from culturally and linguistically diverse (CALD) backgrounds (monograph 2/2009).' National Centre in HIV Social Research, University of New South Wales, Sydney. Available at: http://nchsr.arts.unsw.edu.au (accessed 28 June 2011).

5 Asante, A., Körner, H. and Kippax, S. (2009b). 'Understanding late HIV diagnosis among people from culturally and linguistically diverse (CALD) backgrounds' (monograph 7/2009). National Centre in HIV Social Research, University of New South Wales, Sydney. Available at: http://nchsr.arts.unsw.edu.au (accessed 28 June 2011).

6 Asante, A, Körner, H., McMahon, T., et al. op. cit.

7 Asante, A., Körner, H. and Kippax, S., op. cit.

8 ibid.

9 ibid.

10 ibid

11 Grulich, A., de Visser, R., Smith, A., Rissel, C., and Richters, J. (2003). 'Sex in Australia: Sexually transmissible disease and blood borne virus history in a representative sample of adults.' Australian and New Zealand Journal of Public Health, 27, 234–241.

Dr Augustine Asante is a Research Fellow in the School of Public Health and Community Medicine, The University of New South Wales. Dr Henrike Körner is a Senior Research Fellow at the National Centre in HIV Social Research, The University of New South Wales.

Top

Back to menu