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THE UNIVERSITY OF NEW SOUTH WALES
Thesis/Dissertation Sheet
Title: A study assessing HIV knowledge, risk behaviour, health service usage
and testing in people from culturally and linguistically diverse (CALD)
backgrounds in NSW Australia
Abstract
This research study assessed HIV knowledge, sexual risk behaviours, testing patterns
and health service usage among people from culturally and linguistically diverse
(CALD) backgrounds in NSW. A cross‐sectional survey was undertaken in 2012-2013
at 12 community events in partnership with community organisations. Men and women
aged 16 years or older from Zimbabwe, Thailand, Ethiopia, South Africa, Cambodia
and Sudan participated. These countries were selected as they contribute to high
numbers of HIV notifications relative to their population size in NSW. The survey
questions were framed to appropriately reflect the socio-cultural background of the
communities and translated into local language.
In total, 1 406 people participated; 53% were females, the median age was 30 years
and 82% spoke a language other than English at home. Only 16% of males and 25% of
females answered correctly to all five modes of transmission with around 20-30%
unaware HIV could be transmitted through sexual intercourse, injecting and blood
transfusion and more than half unaware it could be transmitted through birth and
breastfeeding. Under half of participants (46% males, 33% females) reported a non-
steady sexual partner, of which only 27% reported condom use in the last 12 months
(31% males, 23% females). The main reasons for not using condoms with a non-
steady partner was; difficult to bring up the topic (42% males, 64% females); their
partner did not like condoms (14% males, 39% females); and condoms were unnatural
(48% males, 39% females). Just over half of all respondents (54%) had ever had an
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HIV test; with half (56%) occurring when applying for permanent residency, yet most
participants (70%) reported they visit their doctor at least yearly. Having a steady
partner (38%), being scared of a blood test (30%), and perception of having done
nothing to put them at risk (25%), were the main reasons that made it less likely for
participants not to test for HIV.
The study has highlighted the need for gender-specific education and health promotion
programs to address gaps in knowledge, sexual risk behaviour and HIV testing in
CALD populations in NSW. These findings have relevance for other CALD
communities in Australia.
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I hereby grant to the Univer sity o f New South Wales or 11s agenu t h e rlght to archhfe and to make
av~ilable mv thesis ordts5ertatlon In wh(lle or sn pan In the Unlversltv libraries In all forms of meOia.
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a ll or part of this thes!s o rdl.s sertation.
I also au thorise U nivf!rsl tv Mkr-ofl ms to usP. the 350 word at:rstract uf mv t hesl<> tn Dlssert;nkm
The University retognises that there may be cxcaptional clrcums1anees requiring restrlctlons on
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eirc:ums~nc:es and requl(e the app(oval of t he Dean of Graduate Research.
4
Contents
Originality Statement................................................................................................................. 1
Contents ..................................................................................................................................... 5
List of figures .............................................................................................................................. 7
List of tables ............................................................................................................................... 8
List of abbreviations .................................................................................................................. 9
Dedication ................................................................................................................................ 11
Acknowledgements ................................................................................................................. 11
Thesis overview ....................................................................................................................... 15
1.1 Socio-demographic patterns of CALD migrant populations in Australia and NSW .. 17
1.2 Epidemiology of HIV among migrant populations ........................................................ 22
Epidemiology of HIV globally ................................................................................................. 22
1.4 Epidemiology of HIV among migrant populations in the United Kingdom ................. 29
1.5 Epidemiology of HIV among migrant populations in Australia .................................... 34
Late HIV diagnoses ................................................................................................................. 37
The choice of surveillance systems ...................................................................................... 53
Challenges conducting surveillance among migrant population and other marginalised
populations ............................................................................................................................... 55
Chapter 2: Methods................................................................................................................. 61
2.1 Study design and rationale .............................................................................................. 61
2.2 Questionnaire design ....................................................................................................... 66
2.3 Recruitment and implementation .................................................................................... 71
2.4 Data management and analysis ..................................................................................... 78
Chapter 3: Results................................................................................................................... 80
3.1 Demographics ................................................................................................................... 80
3.2 HIV knowledge and attitudes .......................................................................................... 84
3.3 Sex and relationships ....................................................................................................... 88
3.4 Health care access ........................................................................................................... 99
3.5 HIV testing ....................................................................................................................... 102
Chapter 4: Conclusions and Recommendations ............................................................... 111
References ............................................................................................................................. 117
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Appendix ................................................................................................................................. 125
6
List of figures
Figure 1: Number of people living with HIV, United Kingdom 2013 ................................. 30
Figure 2: Prevalence rate by exposure category, United Kingdom 2013 ........................ 31
Figure 3: Age distribution among heterosexual notifications in United Kingdom ............ 32
Figure 4: Newly diagnosed HIV infection in Australia by year ........................................... 35
Figure 5: Newly diagnosed and newly acquired HIV infection in Australia, 2009 – 2013,
by HIV exposure category ...................................................................................................... 36
Figure 6: Rate of HIV diagnosis in Australia, 2004 – 2013, by country/region of birth .. 37
Figure 7: Late and advanced HIV diagnoses, 2004-2013, by year and exposure
category (45). ........................................................................................................................... 38
Figure 8: Pictures taken from a soccer tournament event ................................................. 75
Figure 9: Pictures taken from a Cambodian cultural festival event .................................. 75
Figure 10: Pictures of the banner taken at a soccer tournament event with some of the
soccer players .......................................................................................................................... 76
Figure 11: Pictures of some of the survey helpers taken at a Cambodian cultural
festival event ............................................................................................................................ 76
Figure 12: A picture of one of the researchers handing out incentives to survey
participants ............................................................................................................................... 78
Figure 13: The proportion of survey respondents from each community ........................ 81
Figure 14: Religious identification of survey respondents ................................................. 82
Figure 15: Respondents’ highest level of completed education........................................ 83
Figure 16: Employment status of respondents .................................................................... 83
Figure 17: Proportion of respondents correctly identifying modes of HIV transmission 84
Figure 18: Proportion of survey respondents’ indicating modes of HIV transmission .... 85
Figure 19: Respondents’ attitudes to people living with HIV ............................................. 87
Figure 20: Experience of sexual intercourse of respondents, by sex ............................... 88
Figure 21: Number of sexual partners of the opposite sex in the last twelve months, by
sex ............................................................................................................................................. 89
Figure 22: Number of steady partners, by sex ................................................................... 90
Figure 23: Condom use with a steady partner, by sex ....................................................... 90
Figure 24: Reasons for not using condoms with steady partner ....................................... 91
Figure 25: How respondents would feel if their steady partner suggested using a
condom ..................................................................................................................................... 92
Figure 26: Sex with a non-steady partner, by sex............................................................... 93
Figure 27: Condom use with non-steady partner, by sex .................................................. 93
Figure 28: Reasons for not using condoms with non-steady partner ............................... 94
Figure 29: Reponses to question ‘If your non-steady partner suggested using a condom
how would you feel’ ................................................................................................................. 95
Figure 30: Travel to home country or a country near it by gender and age group ........ 96
Figure 31: Frequency of travel to home country or a country near it, by sex. ................. 97
Figure 32: Sex and condom use in home country or country near it ................................ 98
Figure 33: Health care and health insurance ..................................................................... 100
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Figure 34: Health care access, by sex ............................................................................... 100
Figure 35: Frequency of doctor visits ................................................................................. 101
Figure 36: Factors which make it less likely for respondents to visit their doctor (GP) 102
Figure 37: Ever tested for HIV-all respondents ................................................................. 103
Figure 38: Ever tested for HIV, by sex and age group ..................................................... 104
Figure 39: Timing of respondents’ last HIV test, by sex ................................................... 104
Figure 40: Location of most recent HIV test, by HIV status ............................................. 105
Figure 41: Reason for last HIV test, by sex ....................................................................... 106
Figure 42: Reasons that made it less like to have an HIV test, all survey participants 107
Figure 43: Factors that made it less likely to get an HIV test, respondents with a steady
partner, by sex ....................................................................................................................... 107
Figure 44: Factors that made it less likely to get an HIV test, respondents with a non-
steady partner, by sex .......................................................................................................... 108
List of tables
Table 1: Settler arrivals in Australia by region of birth, July 2012- June 2013 ................ 19
Table 2: Net overseas migration, selected characteristics - State & territory - 2012-13
................................................................................................................................................... 20
Table 3: 2013 global and regional statistics......................................................................... 23
Table 4: Summary of heterosexual transmission in selected resource rich countries
(29) ............................................................................................................................................ 28
Table 5: Ideal HIV surveillance variables related to migrant CALD populations............. 44
Table 6: Surveillance variables collected ............................................................................. 46
Table 7: Heterosexually acquired HIV diagnosis in people from high HIV prevalence
countries, Australia, 2001-2010 (132) . ................................................................................ 65
Table 8: Comparison of Surveys (2006-2008) and (2012-2014) ...................................... 67
Table 9: Details of community events selected for the survey .......................................... 71
Table 10: Key characteristics of the survey respondents .................................................. 81
Table 11: Identification of modes of HIV transmission, by sex.......................................... 86
Table 12: Number of sex partners of the opposite sex in the last twelve months, by sex
................................................................................................................................................... 89
Table 13: Condom use with steady partners, by sex.......................................................... 91
Table 14: Condom use with non-steady partners, by sex.................................................. 94
Table 15: HIV testing among survey respondents, by sex .............................................. 103
Table 16: Factors that made it less likely to get an HIV test, respondents with a non-
steady partner, by sex .......................................................................................................... 109
Table 17: Frequency of doctors’ visits and the proportion ever tested for HIV ............. 110
8
List of abbreviations
NT Northern Territory
SA South Australia
SE South East
TAS Tasmania
UK United Kingdom
9
UNAIDS Joint United Nations Programme on HIV/AIDS
VIC Victoria
QLD Queensland
WA Western Australia
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Dedication
This thesis is also dedicated to the love of my life Terry Benn, my beloved husband
who chose to forego all the family time we were supposed to spend together as I
worked tireless on the thesis. Your wisdom, patience, words of encouragement and
your unfailing love never stops to amaze me.
Acknowledgements
Associate Professors: Rebecca Guy and David Wilson of the Kirby institute
University of New South Wales Australia for all your unwavering support and
professional academic guidance throughout the project. Your world of experience and
excellence in mentoring students made it possible for me to complete this project. Over
the years, you have moulded me to be a better writer, thinker and a great listener. Most
of all I am so thankful for your understanding, wisdom, patience, enthusiasm,
encouragement and your push for excellence which made me to go far beyond what I
thought I could ever go.
Doctor: Skye McGregor of the Kirby institute University of New South Wales Australia
for all your support and encouragement over the years. I would like to particularly thank
you for coming along to those far and beyond suburbs of Western Sydney in support of
the project and staying up late on most Monday afternoons at Coogee to physically
count the surveys. Most of all I am so thankful for your patience in teaching me many
things including ‘Endnote’ which is a great tool of referencing. Thank you so much for
your advice on the general structure of the thesis write-up.
NSW Health Lemongrove HARP Unit: My sincere thanks go to the staff and
management at Lemongrove HARP Unit of the Nepean and Blue Mountains local
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health district for their unwavering support over the years. Without their support it was
totally impossible to complete this project.
Survey: I am grateful to all participants who completed the survey. I would like to thank
the project steering committee for their guidance throughout the development of the
questionnaire and the recruitment process: Elizabeth O’Neil, Tadgh McMahon, Chris
Lemon, Ben Wilcock, Siri May, Pene Manolas, and Henrike Korner. I would also
particularly thank Multicultural HIV/AIDS and Hepatitis C services; Tadgh McMahon
and Barbara Luisi for their continuous support in organising and proving co-workers to
provide guidance throughout the process of translating the survey into different
community languages. Finally I would also like to acknowledge the contribution of
people from the following communities:
Thai community
o Rachanepon Chantara-aree, Multicultural HIV/AIDS and Hepatitis C Service;
o Jeff Dabbhadatta, Health Promotion Officer, HIV & Related Programs Unit,
SESIAHS
o Kanyarat Tresise, President, Thai Welfare Association
o Thiraya Meemetkun Thai Welfare Association
Cambodian community
o Thin Em, Cambodian Australian Welfare Council of NSW
o Cambodian Australian Welfare council of NSW Incorparated
o Soratana Ung- Cambodian Australian Welfare Council
o Theau Yourth- Cambodian Australian Welfare Council
o Sinatt Cheng Tang- Cambodian Australian Welfare Council
o Virak
Sudanese community
o Monica Biel, Anglicare Parramatta
o Isaac Maper Akec - North shore hospital
o Daniel Apat- Anglicare
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o Michael Dun- Blacktown Migrant resource centre
o Benjamin Wani-Chairman Sudanese community
Ethiopian community
o Aynalem Tessema, Auburn Migrant Resource Centre
o Almaz Yimam, Auburn Migrant Resource Centre
o ASaafa Bakele- Police Liason officer NSW police
o Josepm Boal- Ethiopian president
o Selome Gebremasiam- Multicultural HIV/AIDS and Hepatitis C Service
o Tsehay Adegeh- Multicultural HIV/AIDS and Hepatitis C Service
Zimbabwean community
o Maseko Manyise- Multicultural HIV/AIDS and Hepatitis C Service
o Mereline Murimwa- Blacktown Migrant resource centre
o Bernard Muchemwa- Chairman Zambezi football Club
o David Shekede- President Zimbabwean community
I would also like to thank all the members of the following organisations:
o Auburn Migrant Resource Centre
o Cambodian Australian Welfare Council Cambodian community, Sydney
o Ethiopian community, Sydney
o HIV & Related Programs Unit, Sydney West area health services (SWAHS) and
South West Area Health Service (SSWAHS)
o Khmer Community of NSW
o Sudanese community, Sydney
o Thai–Australian Association
o Thai community, Sydney
o Zambezi soccer club Bankstown,
o Sydwest Migrant resource centre
o The South African community members Sydney
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o Members of the ACDN group Sydney
o Thai Welfare Association.
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Thesis overview
Although the HIV epidemic in Australia remains concentrated primarily among men
who have sex with men; about half of heterosexually acquired cases are among people
from countries where the prevalence of HIV is high (>1%), particularly Sub Saharan
Africa and South East Asia, or their partners were from these countries. The numbers
of HIV diagnoses among people born in Sub Saharan Africa and South East Asia has
increased by 66% in the past decade and about a third are diagnosed late when their
CD4 count drops below 350 cells/ul, indicating they have been infected for many 4-5
years without knowing. Late diagnoses increase the risk of HIV related morbidity and
also can result in onwards transmission of HIV in the community.
However little is known about the knowledge, sexual risk behavior and HIV testing
patterns of Sub Saharan Africa and South East Asia populations living in Australia. In
Australia there are surveillance systems established to monitor these important
prevention indicators in gay men, and the general population, but no such mechanisms
exists specifically for people from culturally and linguistically diverse (CALD)
backgrounds, particularly Sub Saharan Africa and South East Asia. In 2006-2008 the
Centre for Social Research in Health at the University of New South Wales conducted
a community-based survey among people from Sub Saharan Africa and South East
Asia populations in NSW but it had some limitations in regards to sample size, number
of communities involved and very few questions asked in relation to HIV risk behavior
and testing. The aims of this thesis were to conduct a survey which provided new
knowledge on the HIV knowledge, risk behaviour, health service usage and HIV testing
patterns among CALD populations in NSW.
Chapter 2 describes the design and procedures used to address the study aim. A
cross sectional survey was conducted at community events and focused on HIV
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knowledge, attitudes, risk behaviors, testing and health service access. The survey
aimed to recruit Sub Saharan Africa and south East Asia populations living in NSW
(Thailand, Cambodia, Zimbabwe, Ethiopia, Sudan, and South Africa). These
communities were selected based on HIV notification rates and population size. People
either born in or their parents were born in one of the target countries, and aged 16
years and over, were eligible.
Chapter 3 describes the results of the survey. The results were presented under the
following subheadings: Demographic data and key characteristics of the survey, HIV
knowledge, transmission risks and attitudes towards people living with HIV, Sex and
relationships, including condom use and barriers to condom use, travel or visitation to
their country of birth, health care access and HIV testing patterns. Findings for males
and females are compared. A total of 1 406 eligible people participated; 53% were
females, the median age was 30 years, 82% spoke their native languages at home and
the median time they had lived in Australia was ten years .
The appendix consists of the survey (questionnaire) and the participant information
sheet.
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Chapter 1
CALD is a broad and inclusive term used in Australia to define communities with
diverse and different traditions, (2) language, religion and ethnic backgrounds.(3, 4)
The Australian Bureau of Statistics (ABS) defines CALD as those people born
overseas, in countries other than those classified by the ABS as ‘main English
speaking countries’.(3) English speaking countries other than Australia according to
ABS are listed as: Canada, the Republic of Ireland, New Zealand, South Africa, the
United Kingdom (England, Scotland, Wales, and Northern Ireland) and the United
States of America. In Australia, CALD is the preferred term used by many government
and community agencies as a contemporary descriptor for ethnic communities.(3)
Migration is defined as the movement of people from one country or region to another,
usually as an indication of a temporary or permanent change of settlement. Although
migration can happen internally, in this chapter the focus is on overseas migration to
Australia. In the thesis the terms CALD and migrants is used in relation to people from
Sub Saharan Africa and South-East Asia.
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Reasons for migration from one country to another include career opportunities, social,
political, economic and environmental considerations (6). Most migrants to Australia
come under the skilled migration stream(8). This category accounts for 61% of
migrants in the last 5 years. Family reunion migration is the next largest group (people
applying to join family members in Australia) accounting for 31%, with the humanitarian
stream accounting for a further 8% of total migrant intake (8). Some migrants come to
Australia to escape from religious and political persecution, and to seek better
employment opportunities (9).
The 2011 Australian Bureau of Statistics (ABS) Census reported that one in every four
(26%) of the Australian population was born overseas, with 85% of those born
overseas living in urban areas, compared to 67% of the overall Australian population.
Australia has a similar migrant population estimate to New Zealand (23%) and Canada
(21%) but higher than the United States of America (13%) and the United Kingdom
(13%) (10). According to the ABS 2011 Census, almost half (49%) of well settled
migrants (more than 5 years in Australia) and 67% of recent arrivals spoke a language
other than English at home in Australia (8).
A large number of migrants came to Australia at the end of World War II after
agreements were made with the international refugee organization (IRO), which
allowed migration from Britain, and some European countries including people
displaced by the war in Europe. An estimated 2, 5 million people migrated to Australia
during that period up to the year 2000.(11) In 1952, the Australian government allowed
Greek unskilled workers through the Australian-Greece Assisted Passages agreement
to migrate to Australia. This agreement provided financial incentives for Greeks to
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leave their homeland, and make their way to Australia. This was a post-war migration
policy; aimed at increasing the size of manufacturing industrial workers. Between 1961
and 1966, 140 000 Greeks immigrated to Australia (6, 8).
Each year, 27 000 settlers to Australia come from South East Asia and Sub Saharan
Africa with about 31 000 arriving between July 2012-June 2013 (Table 1) (5). A settler
is a person who has migrated to an area and establish permanent residence.(12) The
proportion of migrants coming from South East Asia and Sub Saharan Africa has
increased over the years (5). Migration from Sub Saharan Africa to Australia is often
related to war and post war tension and violence leading to political uncertainty (6).
Poverty leading to economic instability is also among some of the reasons for migration
from Sub Saharan Africa (13). High levels of poverty and unemployment are some of
the reasons for people from South East Asian to migrate to Australia. Most people from
South East Asia and Sub Saharan Africa gain entry into to Australia through the family
reunification visa application, refugee or skilled worker scheme (8). Table 1 below
presents a summary of migration patterns of people from South East Asian and Sub
Saharan African over 12 months.
Table 1: Settler arrivals in Australia by region of birth, July 2012- June 2013
Table 2: Net overseas migration, selected characteristics - State & territory - 2012-13
NSW 67 784 27.7 160 324 27.2 100.6 92 540 29.3 102.3
Vic 60 632 24.8 122 240 26.6 100.2 61 608 28.0 104.6
Qld 45 104 18.5 98 428 26.5 100.8 53 324 28.2 106.4
SA 11 622 4.8 23 076 27.0 102.0 11 454 27.7 105.8
WA 51 809 21.2 84 874 27.1 108.7 33 065 28.7 117.9
Tas 1 385 0.6 3 817 27.8 105.4 2 432 28.7 106.8
NT 3 065 1.3 6 997 28.2 127.0 3 932 29.9 139.2
ACT 2 968 1.2 8 902 27.7 99.0 5 934 28.5 107.6
Australia 244 371 100.0 508 662 26.9 102.2 264 291 28.6 106.3
(c)
In 2011 there were 1 778 452 people living in New South Wales who were born
overseas, and 19% arrived in Australia within the 5 years prior to 2011. In New South
Wales between 2006 and 2011, the number of people born overseas increased by 15%
(n=225 885) and the number of people from a non-English speaking background
increased by 17% (n=190 302) (8). This pattern of settlement is predicted to continue
into the future.(15) In New South Wales, migrants come mostly from the United
Kingdom, China, India, Philippines, South Africa, Vietnam, Indonesia, Thailand,
Malaysia, Afghanistan, Iran, Ireland and Singapore. Between 2012 and 2013 there
were 8 474 migrants from Sub Saharan Africa.
According to the 2011 Census, the top five religions are in In New South Wales are
Christian (Western Catholic), Buddhism, Islam, Christians not further defined and
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Greek Orthodox. New South Wales also continues to experience a great diversity of
languages with Arabic, Mandarin, Cantonese, Vietnamese and Greek, being the top
five mostly spoken (6).
There is evidence that population mobility, and the social structure of migrant
communities directly influences the health status of individuals (17). The World Health
Organization (WHO) defines health as a state of complete physical, mental and social
well-being and not merely the absence of disease or infirmity (6). Different types of
migrants face different health and social inequality challenges. Migration means
people often bring with them health issues related to their country of origin such as
HIV, yet despite good health care services, they may not access them, due to stigma,
lack of knowledge of the infrastructure and lack of culturally appropriate services (18).
On the other hand, circumstances that led to the migration itself, coupled with the
resettlement structure and difficulties maintaining contact with their family, could affect
the mental and emotional wellbeing of individuals (6). Language skills and familiarity
with the culture of the host community also play an important role in determining health
outcomes (6).
Understanding migration patterns and the circumstances in which people arrive and
settle is important when planning culturally appropriate health interventions and also
developing systems to monitor trends in health states such as HIV.
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1.2 Epidemiology of HIV among migrant populations
Overview
Since the start of the HIV/AIDS epidemic, about 78 million people have been infected
with the HIV virus; nearly 40 million people have died of AIDS related syndrome and
about 35 million people were living with HIV at the end of 2013.(21) HIV has been
recognised as one of the major public health challenges throughout the world (19).
Table 3 below gives a summary of the globally HIV statistics by region.
22
Table 3: 2013 global and regional statistics
Asia and the 4.8 million 210 000 350 000 22 000 250 000
Pacific
Western and
Central 2.3 million 2800 88 000 <500 27 000
Europe and North
America
According to UNAIDS, the number of new HIV infections among adults and
adolescents decreased by 50% or more in 26 countries between 2001 and 2012.(22)
This is attributed to a worldwide collaborative response in implementing successful HIV
prevention programs and significant effort by researchers working towards the
improvement of HIV medications and treatment up take. Trends in new adult infections
differ from region to region with Sub Saharan Africa continually being disproportionately
affected by HIV (21). However there have been some changes in the epidemic in the
past ten years, due to the accessibility and availability of effective treatment.(20, 21,
23) Increased expansion of antiretroviral treatment has resulted in 9.7 million people in
low income countries having access to antiretroviral therapy at the end of 2012 (22) .
From 2001 to 2013, new adult HIV infections in Sub Saharan Africa declined by 34%
and by 49% in the Caribbean (21). On the contrary, new HIV infections have been on
the rise in Eastern Europe and Central Asia in recent years (21) . In Eastern Europe
the rate of HIV diagnosis per 100 000 population increased from 11.7 in 2004 to 22.5 in
2011. The increase was initially attributed to injecting drug use, but heterosexual
23
transmission has now become a major driver of new infections in the region (24).
Similarly, new HIV infections continue to rise in the Middle East and North Africa. The
HIV epidemic in Middle East and North Africa is concentrated among certain key
populations, such as men who have sex with men, female sex workers and people who
inject drugs. Fear and stigma is a common in this region, as homosexuality and
commercial sex work are socially and religiously condemned. People who engage in
these behaviours fear to come out and seek treatment as they may end up being
arrested (25). On the contrary the region has been a war zone area which leads to a
fragmented health care system (26, 27) .
Key populations at risk of HIV are those most vulnerable and likely to be exposed to
HIV and continue to be affected disproportionally. Key populations as identified by
UNAIDS are female sex workers, men who have sex with men and people who inject
drugs. These populations are consistently at risk of contracting HIV and yet especially
in low and middle countries, they are less likely to access prevention, care, and
treatment services because their behaviours are often stigmatized and even
criminalized (21).
In 2013, nearly 3 million people living with HIV were people who inject drugs,
accounting for approximately 5–10% of all people living with HIV. This population group
is reported as having high HIV prevalence in almost all the regions. HIV prevalence
among people who inject drugs ranged from 5% in Eastern Europe to 28% in Asia in
2013. Fear of being criminalised and other illegalities plus the stigma associated with
injecting drugs make HIV prevention and treatment particularly difficult among this
population group (21).
High rates of HIV have been reported in many countries among female sex workers,
including those considered to be experiencing a low HIV prevalence. According to
UNAIDS, female sex workers are 13.5 times more likely to be infected with HIV more
than other women in the world. In West Africa, substantial proportions of new infections
24
(10–32%) were estimated to occur as a result of sex work. After a comprehensive data
analysis, HIV prevalence among female sex workers in Sub Saharan Africa was found
to be 36.9%, 10.9% in Eastern Europe and 6.1% in Latin America (21). Discrimination
and marginalization makes prevention efforts very difficult among this population group
(7).
Men who have sex men continue to shoulder a disproportionate HIV burden ever since
the epidemic started. HIV prevalence among this group is 13 times higher than the rest
of the population (21). In 2013, HIV infections among men who have sex with men
were reported to be substantially high in all regions, accounting for 10% or more of new
infections in Côte d’Ivoire, Ghana and Nigeria, 33% in the Dominican Republic and
56% in Peru. HIV prevalence among men who have sex with men has been found to
be as high as 38% in Jamaica, 25% in Ghana, 43% in coastal Kenya, 25% in Thailand
and 19% in both Côte d’Ivoire and Guyana. The latest survey data regarding HIV
prevalence among men who have sex with men in different regions and countries are
summarized in UNAIDS 2013 global report on the AIDS epidemic (21).
France
In France since 2003, 68% of all new heterosexual notifications were in people born in
Sub Saharan Africa, particularly from Cameroon, Cote d’Ivoire and Congo. In
Germany, between 2001 and 2012, 40% of all new diagnosis was in people from Sub
25
Saharan Africa, 58% were among Germany natives, 25% were among people born
outside Germany and 17% with unknown country of origin. During the same period,
46% of those known to have acquired HIV heterosexually were from Sub Saharan
Africa (21, 30).
Netherlands
In the Netherlands, in 2012, people from Sub Saharan Africa accounted for 28% of all
new diagnoses of heterosexually acquired HIV (31). Further studies from Netherlands
investigated how sexual behaviour of migrants originating from HIV-endemic countries
affected the spread of HIV among heterosexuals in low-endemic countries. The study
described the transmission of HIV in heterosexual partnerships between African
migrants, Caribbean migrants, and local natives. A model accounting for infection of
migrants before migration and during trips to their home country was developed. The
study concluded that migrants in low-prevalence countries and their sexual behaviour
in the country of residence contributed considerably the spread of HIV this was
attributed to lack of significant behaviour change in condom usage during sexual
intercourse (32).
USA
In the USA, by 2009, the number of African-born residents living in the United States
(US) had increased by more than 750%. HIV diagnosis rates among African-born
people are estimated to be six times higher than the general US population. However,
US surveillance reports often group African-born residents with US-born Blacks making
it impossible to calculate the percentages of those born in Sub Saharan African (33).
Canada
In Canada in 2013, 49.3% of all reported HIV cases in adults were attributed to the
men who have sex with men. However, the second-most reported exposure category
among adults was heterosexual contact (29.6%), which included cases attributed to
heterosexual contact among people born in high HIV prevalence countries.
Furthermore, between January 1, 2005 and December 31, 2012, 1 058 immigrants
were diagnosed with HIV infection through the Canadian immigration screening
program. Among HIV-positive applicants, 69.5% were born in high HIV prevalence
countries, with Ethiopia (19.6%), Democratic Republic of Congo (9.7%), and Burundi
26
(5.6%) being the most frequently reported countries of birth (34). About 5.9% of
heterosexual notifications in 2012 in Canada were from South Asian/West Asian/Arab
countries (16).
New Zealand
New Zealand has one of the lowest HIV prevalence rates in the world with an overall
downward trend in HIV diagnosis among heterosexual since 2006. HIV diagnoses
among heterosexual people increased sharply from 2002 to 2006 due to a large
increase in immigrants and refugees between 2002 and 2004 from countries with a
high HIV prevalence rates. During this period, HIV screening was not a compulsory
part of the immigration process to New Zealand. In late 2005 New Zealand introduced
mandatory HIV testing for residency applying for visas for longer than 12 months.
Heterosexual diagnoses began to decline from 2007 due to these changes (35). In
2013, only 40 heterosexual people (21 men and 19 women) were infected with HIV.
Despite decline in HIV infection, trends over the last 10 years show consistently that
the majority of heterosexual people diagnosed in New Zealand are from Sub Saharan
Africa and South East Asian (35).
Although HIV acquisition in the United Kingdom is now mostly acquired locally, about a
decade ago, HIV diagnoses were high among people born in Africa, and most acquired
overseas (36). More about United Kingdom and Australian HIV acquisition among
people from high prevalence countries is explained later in this chapter. There is no
specific focus on HIV acquisition from migrants from South East from most of the
resource rich countries mostly because the numbers are too small. HIV acquisition
from migrants from South East will be discussed later on the Australian epidemiology
section. Table 4 below give a summary of heterosexual transmission in selected
resource rich countries.
27
Table 4: Summary of heterosexual transmission in selected resource rich countries
(29)
Information sourced from European Centre for infection and disease control (37).
Considering the similarity of the United Kingdom in regards to health care, epidemic
and income and availability of data, the next section focuses specifically on the HIV
epidemic in the United Kingdom.
28
1.4 Epidemiology of HIV among migrant populations in
the United Kingdom
About 50% of the United Kingdom’s heterosexual notifications are from high HIV
prevalence countries, particularly from Sub Saharan Africa. As a result, a number of
studies have examined HIV prevention needs amongst these communities in the
United Kingdom. Since 2007, Sigma Research has been conducting community survey
among African people living in England to assess HIV prevention needs called the
‘Bass Line’ (38). United Kingdom was particularly focused for this review among other
countries, because they have better surveillance systems for this population. Also ten
years ago, United Kingdom had a similar epidemiology to Australia, although half of
their infections are now locally acquired (36, 39).
In 2013, an estimated 107 800 (101 600-115,800) people were living with HIV in the
United Kingdom, with an estimated prevalence rate of 2.8 per 1,000 populations aged
15-59 (1.9 per 1000 in women and 3.7 in men). Prevalence estimates in the United
Kingdom are generated using a combination of census, surveillance, and survey data
and complex statistical models (40). About a quarter (24%) of people estimated to be
living with HIV were estimated to be unaware of their HIV status and remain at risk of
passing on the virus if having unprotected sex. The HIV epidemic in the United
Kingdom is concentrated among men who have sex with men (MSM) and black-African
heterosexual men and women (36).
Approximately 43 500 men who have sex with men were living with HIV in 2013, with
an estimated prevalence of 49 per 1000. Heterosexual men and women accounted for
59 500 people living with HIV in 2013, with the majority (38 700) being African-born,
constituting about 65% of all heterosexual notifications. The HIV prevalence rate
among black-African heterosexuals is 56 per 1 000 population aged 15-59 years (41
per 1 000 men and 71 per 1,000 women). Almost two in five (38%) black-African men
and one in three (31%) black-African women living with HIV remained unaware of their
infection. Rates of undiagnosed infection were higher outside London at 50% and 41%,
respectively (36).
29
In the United Kingdom, people from Sub Saran African are affected by HIV and AIDS
virus to a far greater extent than any other ethnic groups, representing approximately
more than a quarter of new diagnoses in 2013.The implications have been especially
great in the United Kingdom, due to this country's close links with countries of southern
and eastern Africa, the most severely HIV-affected region in the world (41).
Source: HIV/AIDS surveillance report (HIV in the United Kingdom 2014) (36).
30
Figure 2: Prevalence rate by exposure category, United Kingdom 2013
Source: 2014 HIV/AIDS surveillance report (HIV in the United Kingdom 2014) (40).
31
New diagnoses
A total of 6 000 people were diagnoses with HIV in the United Kingdom in 2013 (4 480
men and 1 520 women), with an estimated HIV diagnosis rate of 1.0 per 10 000
population (36, 40). The age distribution of people newly diagnosed with HIV is
changing, with diagnoses among older age-groups increasing both in number and
proportion (36, 40). One in five newly diagnosed heterosexual people was aged 50
years or above in 2013 compared to one in 14 in 2004. Those aged 25-39 years and
40-49 years accounted for the largest share of new HIV diagnoses in 2013. Figure 3
below gives a summary of the age distribution.
Source: 2014 HIV/AIDS surveillance report (HIV in the United Kingdom 2014) (40).
32
Late diagnoses
In 2013, about 42% (2 500) of adults (aged 15 years or above) were diagnosed late
according to the United Kingdom HIV report 2014. One quarter (24%, 1 430) was
severely immunocompromised at diagnosis having a CD4 count ˂200 cells/mm3.(36)
Early diagnosis of HIV is an essential component of the response to the epidemic, with
important individual and population benefits. Timely access to treatment and care
improves health outcomes for individuals leading to the reduction of viral load and
infectiousness (40, 42). Late diagnosis was particularly high among black-African men
(66%), black Caribbean men (59%), and heterosexual black-African women accounting
for 61% diagnosed late. In line with the national guidelines, this highlights the need for
increased health promotion and HIV testing among these population groups.
Undiagnosed infections
Reducing the number of undiagnosed HIV infections is important for preventing further
transmissions, and to ensure provision of appropriate care and treatment for
individuals. Similar to HIV prevalence, estimates of the number of undiagnosed
individuals living with HIV are generated using complex statistical models (based on
CD4 cell count, population samples, blood bank) fitted to existing surveillance and
survey-type data. The most recent report suggests that approximately two in five (38%)
of every black-African men and one in three (31%) black-African women infected with
HIV were unaware of their status in 2013 (40). The black-African community constitutes
the largest number of undiagnosed HIV infection in the (13 000) United Kingdom in
2013 (32, 43, 44).
HIV testing
In 2013, over one million HIV test were performed in the United Kingdom with 86%
being MSM, 77% heterosexual men and 67% women. United Kingdom national
guidelines recommended expansion of HIV testing to services to people admitted to a
general hospital ward and to general practice in areas with a diagnosed HIV
prevalence of ≥2 per 1 000 population aged 15-59 years. This contributed to an
increase in the number of people testing for HIV. (36) The 2008 national guidelines for
HIV testing in the United Kingdom recommend offering testing to patients with specific
indicator conditions, and at all general medical admissions in high-prevalence areas.
Offering testing in a wider range of settings is also encouraged. While guidelines focus
33
on increasing testing, HIV testing is still challenging for a number of key populations in
the United Kingdom, including migrants (40). A 2005 study by Boyd et al found that
black-Africans living in the United Kingdom were testing due to indicative symptoms or
as part of antenatal care, as against health seeking behaviour due to perceived risk
(41).
Over the past decade there has been a significant rise in the number of new diagnoses
of HIV in Australia, including those with evidence of newly acquired infection. Although
the majority of infections still occur among men who have sex with men, the number of
HIV diagnoses among migrants from Sub Saharan Africa and South East Asia is
increasing. Many of these newly diagnosed cases are also reported to be late
presenters (CD4 count less than 200 cells per µl). Delayed diagnosis adversely
impacts on disease progression, long-term prognosis and the onset of AIDS (45).
In 2013, an estimated 26 800 (24 500-30 900) people were living with HIV infection in
Australia, with an estimated prevalence rate of 116 per 100 000 population (114-134)
(45). Approximately 23 800 men and 3 000 women were living with HIV in 2013. 13%
of the 1 236 people newly diagnosed with HIV were female (45). The level of HIV
infection in Australia is lower than most resource rich countries. HIV infection rates in
Australia are generated based on notification data outputs based on HIV exposure
categories (45). Although HIV prevalence in Australia remains reasonably low in
comparison to other countries, annual counts of new HIV diagnoses in 2012 and 2013
were as high as those in 1992 a 9% increase over the past 10 years (Figure 4). The
rate of HIV diagnosis per 100 000 population increased from around 4.7 in 2004 – 2008
to 5.1 in 2009 – 2013 (45). Figure 4 below gives a summary of newly diagnosed HIV
infection in Australia by year.
34
Figure 4: Newly diagnosed HIV infection in Australia by year
2500
2000
Number
1500
1000
500
0
1984 1986 1988 1990 1992 1994 1996 1998 2000 2002 2004 2006 2008 2010 2012
HIV diagnoses Year
New diagnoses
A total of 1 236 cases of newly diagnosed HIV infection was notified in Australia in
2013, similar to the number notified in 2012 (1 253). (Figure: 1) People born in
Australia accounted for 53% of cases of HIV infection newly diagnosed in 2009 – 2013.
Among Australian born cases, the rate of HIV diagnosis was stable at 4.0 in 2004 –
2013 (Figure: 2).(45) HIV acquisitions in Australia are high among men who have sex
with men (MSM) accounting for 88% of new diagnoses in 2013. The number of new
HIV diagnoses among MSM was 3 343 in 2004 – 2008 and 3 863 in 2009 – 2013. In
2009 – 2013, 67% of new HIV diagnoses occurred among men who have sex with men
(71% of reported exposure routes) (45). Cases of HIV infection acquired in a high HIV
prevalence country accounted for 37% in 2009 – 2013, respectively. 75% of cases
between 2009 and 2013 came from high HIV prevalence countries in Sub Saharan
Africa, 21% South East Asia.
The rate of HIV diagnosis in the overseas born population increased from 6.7 in 2004 –
2008 to 7.8 in 2009 – 2013 (45). The number of new HIV diagnoses for which exposure
to HIV was attributed to heterosexual contact, 2% to injecting drug use and exposure
was undetermined in 6% (45). (Figure: 2) heterosexual contact increased from 1 132
in 2004 – 2008 to 1 417 in 2009 – 2013, a 25% increase. The population rate of HIV
diagnosis in the Sub Saharan African born and Asian born populations in the 5 years
from 2009 to 2013 compared with the previous 5 years increased by 66% (45). HIV
35
infection acquired in a high HIV prevalence country accounted for 39% and 37% of HIV
diagnoses in 2013. In 2004 – 2008 and 2009 – 2013, respectively, in both five-year
intervals, the majority of HIV notifications were from high HIV prevalence countries in
Sub Saharan Africa (63% in 2004 – 2008 and 75% in 2009 – 2013), South East Asia
(29% in 2004 – 2008 and 21% in 2009 – 2013) and North Africa/Middle East (7% in
2004 – 2008 and 4% in 2009 – 2012). Although HIV acquisition is largely among MSM,
there is a clear indication of an increase in HIV diagnosis from people from a high
prevalence country over the last decade (45). Figure 5 and 6 below gives a summary of
newly acquired HIV infection in Australia over 5 years by exposure category and
region.
Figure 5: Newly diagnosed and newly acquired HIV infection in Australia, 2009 – 2013,
by HIV exposure category
2%
6% 9%
1%
3%
25%
2%
3% 64%
85%
Men who have sex with men
Men who have sex with men and injecting drug use
Injecting drug use
Heterosexual contact
Other/undetermined
36
Figure 6: Rate of HIV diagnosis in Australia, 2004 – 2013, by country/region of birth
30
Age standardised rate per 100 000
25
20
15
10
0
United Kingdom and Ireland
Sub-Saharan Africa
Australia
Other Oceania
Asia
Other Europe
the Caribbean
2004-2008 2009-2013
Many people living with HIV in Australia are diagnosed late, with low CD4 counts
reflecting later than optimal diagnosis and, in some cases, advanced disease. In 2008–
2012, 39 per cent of HIV diagnoses had a CD4 count of less than 350, including 15 per
cent with a CD4 count less than 200 (45). Nearly a third of people from Sub Saharan
Africa and South East Asia diagnosed with HIV have a CD4 count of <350 cells/µl,
indication their diagnoses has been late. Also 27% of people from Sub Saharan Africa
and South East Asia are diagnosed while presenting with symptoms of AIDS (45, 46)
and a HIV test is usually prompted by a serious health crisis. This is mostly attributed to
a lack of knowledge around their risk of acquiring or having HIV infection (2, 47, 48). It
is estimated that 10–20 per cent of Australians living with HIV have not been
diagnosed, and that this undiagnosed group of people contribute to a significant
proportion of HIV transmission and new cases of HIV. Figure 7 below gives a summary
of HIV infection by year and exposure category.
37
Figure 7: Late and advanced HIV diagnoses, 2004-2013, by year and exposure
category (45).
60
Percentage
50
2004-
40 20082009-
2004- 2013
2008
30
20
10
0
Australi Other Other Middle Sub Asia Northern South/Ce
Oceania Europe East/ Saharan America ntral
North Africa America
Country/region of birth Africa and the
Advanced HIV diagnosis Late HIV diagnosis Caribbea
n
Risk perception among this population group is usually influenced by their perception
and interpretation of the picture of HIV in their countries of origin and failure to
recognise the difference between HIV and AIDS (2, 49). Research has proven that
many people from CALD communities are not aware of the relationship between HIV
and AIDS (2, 50). There is an obvious knowledge gap between the Australian born
population and the migrant population in Australia which be attributed to language
barriers and other parameters.
38
From the last CALD survey, there were indicators which suggested that having
knowledge about HIV acquisition among people from CALD backgrounds 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 (43).
Analysis of national HIV surveillance data demonstrated that in the past ten year
period, the highest diagnoses rates per 100,000 of HIV diagnoses due to heterosexual
contact by country were among people from Thailand, Cambodia, Zimbabwe, Ethiopia,
Sudan, Indonesia and South Africa (45).
Risk factors
Unprotected vaginal intercourse with an HIV-positive partner remains the greatest risk
of contracting HIV infection in most parts of the world (52). In some parts of the world,
commercial sex or sex for money has significantly contributed to an increase in HIV
infection and other sexually transmissible infections (53). Studies have suggested that
biological factors such as circumcision could reduce the risk of HIV infection, and that a
pre-existing STI could increase the risk of contracting HIV. In Australia, little is known
about the major risk factors related to HIV acquisition among heterosexual populations
who have acquired HIV in Australia.
HIV testing
The Australian health system has put in place plans to revitalise HIV prevention efforts
by promoting HIV testing, by increasing access to voluntary and appropriate HIV
testing among people from priority populations, particularly gay men and other men
who have sex with men. Early testing will reduce HIV/AIDS morbidity and mortality. HIV
testing data is highly confidential in Australia and therefore it is treated in that regard
(55).
39
Monitoring the HIV epidemic is essential to understand trends in infection and to inform
the development of appropriate public health and policy responses. Surveillance
systems collect and analyse this information in a methodical manner. The next section
focuses on HIV surveillance systems, with particular reference to CALD populations
and the Australian context.
The primary role of public health surveillance is to guide the planning and evaluation of
policy and programs, through the collection, analysis and interpretation of various
forms of statistical information (56). It is generally considered to be a role of
governments to plan and fund surveillance systems, but it is also understood that they
do so through various forms of partnership with those who collect, interpret and make
use of surveillance data. Surveillance systems vary considerably according to the area
of public health being monitored, the available resources, and factors such as the
structure of the health system in which it is operating. The United States Centers for
Disease Control (CDC) have published guidelines that are widely used in the
evaluation of surveillance systems (57). They provide a framework for assessing
systems against a number of criteria, including simplicity, accuracy,
representativeness, timelessness and acceptability (57). These criteria are important
from a technical perspective, but the value of a surveillance system is ultimately judged
by the extent to which it fulfils its objective of guiding programs and policy (56).
This thesis focuses on surveillance systems that aim to support HIV prevention
programs. Specifically, such systems must provide routine information on key
indicators that can guide the planning and evaluation of initiatives intended to reduce
HIV transmission. There are many different forms of information that may be of
relevance to this task, and a variety of ways in which such information might be
collected. Guidelines and recommendations for HIV surveillance have been developed
by several organisations over the past two decades, including UNAIDS/the World
Health Organization (WHO), (56, 58, 59) CDC (57, 60, 61) and Family Health
International (62). This section provides a review of the key indicators that are needed
to monitor HIV transmission programs, and then considers the various options
available for surveillance systems that can track these indicators.
40
Indicators to assess HIV prevention programs
o Outcome indicators are a second level of monitoring and look at the outcomes
of the strategy, as would be illustrated by the proportion of people who regularly use
condoms or HIV knowledge and attitudes (65). HIV treatment coverage has also
become an important prevention in the era of ‘treatment as prevention’ (TasP). TasP
has now emerged as a new paradigm in HIV prevention policies globally. The essential
elements of TasP are: 1) widespread and frequent testing to detect HIV in the
community as soon as possible after acquisition; and 2) treatment initiation as soon as
possible after diagnosis to suppress viral replication and thereby reduce infectiousness.
The premise that HIV treatment could have a substantial effect on sexual
infectiousness was proven definitively in 2011. The HIV Prevention Trials Network 052
(HPTN 052) randomised trial reported a 96% reduction in the risk of transmission to
partners of heterosexual people allocated to early HIV treatment. In response,
UNAIDS now have targets which focus on testing and treatment :
“By 2020, 90% of all people living with HIV will know their HIV status.
By 2020, 90% of all people with diagnosed HIV infection will receive sustained
antiretroviral therapy.
41
By 2020, 90% of all people receiving antiretroviral therapy will have viral
suppression.”
o Impact indicators are the third and most important level of monitoring and focus
on the impact of the strategy, as might be reflected in the number of new HIV infections
that are occurring in the population under surveillance (65, 66).
Ideally, information at all three levels should be available before, during and after the
implementation of a prevention strategy. The information collected prior to
implementation can provide the basis for planning the implementation, while the
information obtained during and after implementation allows the strategy to be
evaluated in various ways (65). It is important to note that a number of indicators are
monitored on an ongoing basis by routine surveillance systems, and their
measurement is not necessarily synchronised with the implementation of a specific
prevention strategy (67).
The indicators needed to monitor HIV prevention initiatives can be obtained through
routinely collected health information systems, or data collection systems that are put in
place specifically for the purpose of monitoring. A third, hybrid approach involves
supplementing routinely collected health information with additional data collection in
designated areas of interest. In this section, the main methodological approaches to
measuring prevention indicators are described, and their relative strengths and
weaknesses assessed. The focus is on the approaches used to measure indicators of
impact and outcome, rather than process (23).
Routine case-reporting
The most widely used surveillance mechanism for infectious disease, including HIV
infection and AIDS, is based on the routine reporting of newly diagnosed cases to a
central public health unit, either by legal requirement or by agreement (56). Many
countries have set up special structures for HIV and AIDS case-reporting (56).
Reporting of cases may either come from doctors or laboratories, or both, or the
reporting can be centralised at various levels, depending on the administrative
structure of the health service. This system has a natural appeal, in that it can be
established on an ongoing basis, provides full geographic coverage, provides
42
information about the presence of the virus in sub-populations, does not appear to
involve substantial programmatic expense and is used for advocacy (56) .
For each case, there is generally an expectation that information will be reported at
least on age, sex and area of residence and mode of HIV acquisition (68). Some
countries, mainly resource-rich settings, collect enhanced information on race/ethnicity,
visa status, year of arrival, Indigenous status, place of diagnosis and immune status
(indicated by a CD4 count). Focusing on migrant CALD populations, important
variables include country of birth, race/ethnicity, language spoken at home, visa status,
year of arrival, place infection acquired, whether the person plans to stay in Australia.
These variables and their importance are described below in Table 5.
43
Table 5: Ideal HIV surveillance variables related to migrant CALD populations
Visa status Condition of entry to the Collection of the visa status of people who
host country and is have arrived in Australia (or their intention to
categorised according stay) provides important information to
to the length of stay for determine if the diagnosis should be counted
example temporary or in the cases reported.(45) For example in
permanent (73). Australia, a newly diagnosed case reporting of
HIV can only be made in Australia if the
individual has been staying in Australia for a
period of three months or intends to stay for a
year (45).
44
Year of The year a person first Provides an indication of whether the infection
arrival arrived in a host was acquired in the host country or home
country country and the effectiveness of the prevention
response in the host country (15, 45).
Resource Are countries defined The country’s economy directly influences the
rich by IMF(International way health data is collected for surveillance
countries(or monitory Fund) and purposes.
high world bank by their
income source of economic
countries) wealth, especially in
mineral, land, labour or
business enterprise
(capital, equipment,
personnel)
45
Table 6 below provides an overview of the variables collected by surveillance systems
in selected resource rich countries which relate to migrants. The term resource rich
countries can be used interchangeably with the term ‘high income’ countries which in
this research refer to countries that have a good source of economic wealth. (74)
The six countries (US, Canada, United Kingdom, Australia and the Netherlands) were
selected as they had significant migrant populations from Sub Saharan Africa or South
East Asia, so are most similar to Australia’s epidemic.
Across the six selected countries, all surveillance systems collect place of first HIV
diagnosis and CD4 count at diagnosis, all of the countries with the exception of New
Zealand collect country of birth. Three countries (US, Canada, United Kingdom) collect
race/ethnicity, three (United Kingdom, Australia, Netherlands) year of arrival and place
infection acquired and two countries (United Kingdom and Australia) collect language
spoken at home and. Only one country (Australia) collects information to ascertain if
the person plans to stay in the country. Of note, the United States does not collect year
of arrival or visa status/plan to stay but considering recent changes by the United
States government to allow people with HIV status to migrate to the country this may
46
prompt the need to collect variables that will improve HIV surveillance among migrants
(75) . Canada has collected information on ethnicity since 1998; however there are
states which do not collect this information (Ontario and Quebec) and overall only two-
thirds (59.9%) of the reported HIV cases in Canada in 2014 having this information
available.
Despite the attraction of routine case reporting, in many countries, particularly those of
the developing world, such systems are not well respected, because they are subject to
high degrees of underreporting or incomplete reporting (76). In 1997, the WHO
estimated that no more than 15% of cases were reported in many resource-constrained
countries (76). In Australia, there is some variation across jurisdictions with regard to
procedures, but generally a high level of standardisation in procedures is used for HIV
case-reporting, as well as good levels of reporting (77, 78).
The main indicator that can be routinely derived from systems of this kind is the
number of new HIV diagnoses over a defined time period, categorised by whatever
variables are supplied with the case reports. This indicator is valuable for documenting
the activity of HIV diagnostic services, but as it depends very strongly on the patterns
of HIV testing in a population, it has substantial limitations as an indicator of prevention
programs (56). It cannot be interpreted as a measure of HIV prevalence in a
population, because there is no provision of denominator information on who is being
tested. Nor can it be generally viewed as a measure of incidence, as the diagnosis of
cases may relate to infections acquired years in the past, unless the population is being
tested on a regular basis with high levels of coverage. To some extent this situation
could be seen to apply to populations of men who have sex with men in Australian
cities, as a high proportion do undertake HIV tests every one to two years (79) .
However marginalised populations or people from migrant countries often do not test
regularly, for reasons described below, meaning they may be under-represented in the
case reporting data.
47
Surveys for HIV-related risk behaviour
In 2000,UNAIDS and WHO upon realisation that HIV surveillance does not, by itself,
meet the information needs of HIV prevention programs, developed a guided
framework for implementing behavioural surveillance surveys(BSS) (83). Behavioural
surveillance is defined as the ongoing systematic collection, analysis and interpretation
of behavioural data in order to understanding trends in HIV transmission. For several
years now, behavioural surveillance surveys (BSS) have been proven to be a reliable
method to monitor HIV risk behaviours over time. BSS are an integrated surveillance
system useful in monitoring trends in HIV-related knowledge, attitudes and behaviours
in populations at risk of HIV. They have proven to be very useful in gathering
information among sub-populations who may be difficult to reach through routine case
reporting, and yet at high risk for contracting or passing on HIV, such as sex workers,
men who have sex with men and people who inject drugs (83).
Populations
The population involved in HIV-related surveys has generally been defined by either a
behavioural characteristic, such as sexual or injecting activity, or a link to a defined
setting such as a clinical service or institution that can be used as a site of recruitment
to the survey (80). In recent years, there has been increasing use of household-based
surveys that attempt to recruit representative samples of the population, especially in
settings where HIV infection is believed to be generalised, with predominantly
heterosexual transmission (82).
Survey designs
A sample is defined as a subset of the population being studied (83, 84). In research,
samples represent the larger population and are used to gather information about a
population without having to measure the entire population. With any sampling designs,
the decision to choose a sampling method is based on the population being studied
and the nature of the population to be sampled. The cluster sampling method for
example, has been used as a simple random sampling method appropriate for certain
groups of people. With this method, the total population is divided into groups (or
clusters) and a simple random sample of the groups is selected.(85) This method is
most applicable for populations who are fixed at a site or associated with sites or who
are known to visit a specific site frequently. Examples include truck drivers who drive
by a certain route constantly or men who have sex with men who frequently visit the
site, brothel based sex workers who live at the brothel, or secondary school students at
particular schools (86).
Developing a sampling frame (the source from which a sample is drawn) of HIV-related
behaviour requires a well-structured approach (85). Feasibility of conducting the study,
the recruitment potentials and accessibility of the study venue, needs a thorough
assessment and preliminary analysis before recruitment is done. Due to the stigma
associated with HIV in many places and behaviours of hard-to-reach populations,
sampling frame development will require some level of mapping, to determine a
feasible place where members of particular sub-populations tend to gather. The aim
will be to identify sites/locations where sufficient numbers of targeted respondent group
members are found on a regular basis (86).
49
There are certain challenges and limitations associated with sexual behaviour survey
data collection. Factors associated privacy and confidentiality of respondents, the cost
of implementing BSS, fear of false self-reported data about sex and drug-taking due to
associated stigma. The way the questions are framed will also determine the extent to
which people answer questions about sex and drugs.
In many countries, even in those with formalised behavioural surveillance, there seem
to be no established routine or regularity in the timing of behavioural surveillance
among migrant populations. The most surveyed populations are generally youth, MSM
and people who inject drugs. Behavioural surveillance in migrants and ethnic minorities
is done only in a few countries (86). A mapping project conducted by the European
Centre for Disease Prevention and Control in 2009, indicated only four countries
collected behavioural data pertaining to migrant’s populations, namely the United
Kingdom, Spain, Switzerland and the Netherlands (37) . The United Kingdom has
conducted a behavioural survey among African population since 2007, called the
‘BASSLINE’ survey (87) .The BASS Line survey is HIV prevention needs assessment
survey. This survey used a self-completion questionnaire. Participants had a choice of
participating online or by completing a printed A6 (pocket-sized) booklet that was self-
sealing for free postage (87). About 109 survey collaborators were recruited to
overseer participants recruited through community setting. Other participants opted for
the online version. Booklets were translated into English and French. A total of 33,900
English language booklets, and 4 120 French language booklets were distributed to 82
agencies delivering services to African people in England during the 2007 initial survey.
Recruitment was open for a four month period inclusive. The BASS Line survey is
conducted every one to 2 years (87).
In Switzerland between the end of August and December 2013, an internet based
survey named ANSWER collected data about sexual health, sexual behaviour and risk
taking among Sub Saharan African migrants living in Switzerland. This was the first
baseline survey for the HIV/STI related behavioural surveillance among the Sub
Saharan African migrant population to test the methodology of an internet based
approach among this population group as a recruitment strategy (88).
For some years there was a clear distinction between surveys that aimed to collect
information primarily on HIV prevalence, either via blood or saliva specimens, and
those that sought only behavioural or attitudinal information, but more recently there
has been a trend towards integrating the two as far as possible (80, 82). The special
survey designs are generally known as Integrated Bio-Behavioural Surveillance (IBBS)
and are used in areas that require greater understanding of the HIV epidemic. IBBS
Survey designs have been known to be useful to collect data about at risk populations
in settings where there are limitations of existing surveillance and in settings where
there is intense stigma associated with HIV infection. In the 1980s, when these surveys
were first implemented, there was strong support in some countries for using so-called
‘anonymous unlinked’ methods, which involved HIV testing of blood samples taken for
other purposes without specific consent (91). This approach was thought to provide
more representative estimates of prevalence than would be obtained through
consensual surveys,(91) but this has largely been discredited, because it is seen as
depriving individuals of test information that could be to their benefit (91). Such surveys
are also very limited in the extent to which they can provide information on individual
demographic and behavioural characteristics.(92) Furthermore, they do not now
appear to be more representative of general rates than surveys that use other
strategies (80, 82).
Australia took a strong stand against unlinked anonymous surveys in the early 1990s,
preferring instead to encourage high levels of HIV testing and reporting of cases.
However, there was support for the approach of consensual linkage in a national
survey of needle and syringe program attendees, which has now been running
annually since 1995 (93).
51
A key element of the response to the HIV epidemic in many countries has been the
provision of HIV testing through various clinical sites, either via pre-existing facilities
such as sexual health clinics, through the establishment of services specifically for the
purpose of HIV counselling and testing (80, 94) .These sites are often designed in
ways that allow them to provide access to particular population groups who may
otherwise be marginalised or stigmatised and therefore not attend mainstream health
services (80, 94).
Clinical sites that provide HIV testing therefore have the potential to report on several
key indicators that may be of interest in program planning and evaluation (65) . The
number and characteristics of people seeking testing can be seen as both a process
impact indicator, and an outcome indicator for initiatives that are aimed at increasing
HIV testing rates. The prevalence of infection in those tested can be used as an
indicator of the long-term outcome of prevention programs. Clinical sites are also in a
position to provide information on risk behaviour that is routinely obtained from clients,
(94) and can serve as an outcome indicator for prevention programs.
The central objective of HIV prevention programs is to reduce the extent of HIV
transmission. Accordingly, estimates of incident HIV infection rates are a key
programmatic and surveillance indicator (95) and help determine both the need for
intervention programs and their effectiveness. However, it is very difficult to measure
incidence in practice. Direct measurement of incidence requires the use of repeat HIV
testing among large and representative cohorts, which are not generally incorporated
into routine surveillance systems as they are too expensive to be undertaken as
ongoing population monitoring initiatives (96). Given the importance of HIV incidence
as an indicator, a number of alternative approaches have been used to provide
estimates of HIV incidence.
The findings from prevalence surveys can be used to provide indirect estimates of
incidence in people whose earliest exposure to HIV infection can be assumed to have
52
been relatively recent. For example, the prevalence of HIV infection in people whose
first episode of drug injection has been within the past year can be taken as a
surrogate for one-year incidence, provided other sources of infection are unlikely (97).
Studies in Africa have assessed trends in HIV incidence by analysing the results of HIV
prevalence among 15–24 year-old pregnant women (98) .
A major technical advance in surveillance over the past decade has been the
development of serological assays that can be applied to single specimens to
distinguish recently acquired HIV infections from those of longer duration (99). These
tests can be applied to specimens obtained either through routine case-reporting, (100)
prevalence surveys,(101) or clinic-based surveillance, (102-104) and used as the basis
for estimating incidence. Examples of the public health application of these assays
have been studies involving subsets or all cases newly diagnosed , attendees at
anonymous testing clinics,(104, 105) sexually transmitted disease clinics(102-104), and
people attending specialist harm reduction treatment services (106-108). Although a
number of surveillance units are already using these tests on a routine basis, there is
not yet a consensus on their ideal means of application, and particular debates about
the validity of the resulting estimates of HIV incidence (101, 109) .
The most common approach to estimating incidence is to make inferences from the
use of quantitative models informed by all available surveillance data. There are
various modelling approaches which can be used to infer estimates of incidence.
These have been summarized elsewhere (110).
Given the variety of options for surveillance, all with individual strengths and
weaknesses, it is perhaps unsurprising that virtually all countries, and to some extent
different jurisdictions within countries, have come up with their own combinations of
methods to measure key indicators of HIV prevention initiatives (111). Furthermore, it
is difficult to assert in any absolute sense that one system or set of systems is clearly
superior to another. Nevertheless, there are some criteria that have emerged for
guiding the choice of system. Governments and their partners in HIV prevention take
these criteria into consideration in determining ideal strategies for the populations that
fall under their responsibility.
53
At a practical level, the surveillance system must fit within the budget and structure of
the overall health system at any given time. There is no point in countries designing
systems that are not properly resourced, nor should they try to put in place surveillance
mechanisms that create tensions with service provision. Similarly, there may be
political or cultural constraints that have an impact on the methodological options
available for surveillance systems.
From a scientific and public health perspective, it is clear that HIV epidemics can differ
considerably over place and time, and the monitoring systems that are used to guide
prevention initiatives need to reflect the current state of the epidemic in a given setting
(56) . These principles are recognised in the UNAIDS guidelines for second-generation
surveillance (56). In very early stages, when HIV infection is at low levels, it makes
sense to focus attention on monitoring the potential transmission via surveys of sub-
populations with risk behaviour,(56) monitoring sexually transmissible infections (STIs)
and other biological markers of risk,(56) tracking levels of testing to make sure that
people at risk will be diagnosed if they acquire infection and routinely recording new
diagnoses of HIV infection (56). If transmission appears in particular population
groups, such as people who inject drugs, MSM or migrant populations, reflecting so-
called ‘concentrated’ epidemics, then it is necessary for HIV and behavioural
surveillance systems to be put in place to allow the appropriate measurement of
program indicators in these groups and populations to which they are epidemiologically
linked. There may not need to be a strong focus on the wider population, although
cross-sectional surveys of behaviour in the general population and monitoring of HIV
prevalence in populations such as antenatal women in urban areas could be conducted
(56). In so-called ‘generalised’ epidemics, when the overall population prevalence
exceeds 1%, broader surveillance measures are called for, which may involve
monitoring of HIV prevalence in antenatal women on a routine basis in both urban and
rural areas and cross-sectional surveys of behaviour in the general population.(56)
Depending on the nature of the epidemic, these activities may also be supplemented
with the monitoring of populations at higher risk (56). Data on morbidity and mortality
are also important in generalised epidemics to provide an indication of overall public
health outcomes (56).
The ongoing challenge for surveillance systems, whether they are related to HIV
infection or any other condition, is to be sufficiently stable to allow valid comparisons to
be made over time, at the same time as being responsive and adaptable to an evolving
environment, should the patters of infection start to qualitatively change (56).
54
Challenges conducting surveillance among migrant population
and other marginalised populations
Stigma, cultural and religious beliefs and factors such fear of navigating through
unfamiliar health services, are among many challenges faced by migrants. Issues such
as negative experiences with health care workers or inaccurate prevention messages
in their home country prior to arrival, low perception of risk or limited general health-
seeking behaviours are some of the challenges that makes surveillance among migrant
population difficult (112, 113).
Migrants are disproportionately affected by HIV in resource rich countries despite the
availability of health care facilities (112) . Fear associated with death of the disease and
fear of stigma and discrimination in the community, are some of the major challenges
that makes surveillance difficulty among this population group. Research suggests that
participants who report high levels of stigma are four times more likely to report poor
access to health care (114). Even for migrants aware of their HIV risk, housing and
settlement issues, poverty and unemployment, language barriers and restrictive
immigration policies could be additional barriers to HIV testing (114). Lack of political
will and the absence of voices of representation in decision-making processes are also
major factors preventing migrants from testing. Also many migrant populations come
from cultural backgrounds where discussing sexual health is difficult. This is reinforced
by some cultural traditions and religion mostly centred on man, leading to woman’s lack
of power in relationships and control of sex (114). According to a report by the
European Centre for Disease prevention and control migrants often have limited
access to sexual health information and services due to preconceived ideas that
seeking sexual health information will encourage sexual activity (115). Also in some
countries migrant populations might be too small so may not be captured in general
populations surveys
In Australia, national HIV monitoring has been primarily based on HIV and AIDS case-
reporting. Infectious disease surveillance in Australia is coordinated through the
National Notifiable Diseases Surveillance System (NNDSS) (116). Australia has a
legislative responsibility to carry out communicable disease surveillance in all the
55
states and territories funded by the commonwealth government. In Australia, The Kirby
Institute of the University of New South Wales is responsible for the coordination of the
national surveillance for HIV/AIDS. The Kirby institute has the mandate of publishing
the Annual Surveillance Report of HIV, viral hepatitis, STIs, which has been produced
since 1997. The annual surveillance report provides a comprehensive analysis and
interpretation of surveillance data on HIV and other sexually transmitted and blood
borne viruses in Australia (45, 116).
The notification process in Australia involves the completion of an HIV notification form
designed to be completed by a diagnosing clinician. The form captures information on
laboratory information, including evidence of newly acquired infection, recent negative
test (within 12 months) and history of specific antibodies detected by Western blot in
consecutive specimens consistent with the primary specimen. HIV case reporting is
highly confidential and cases are reported using a coding system (45, 116).
The CD4 count is used to classify cases as advanced HIV diagnosis (newly diagnosed
HIV infection with a CD4+ cell count less than 200 cells/μl) or late HIV diagnosis (newly
diagnosed HIV infection with a CD4+ cell count of less than 350 cells/μl) (45).
56
Based on the reported mode of exposure, notifications are classified into one of the
following categories below. A risk hierarchy is used in that if two exposures are
reported then the exposure mode which is associated with greatest risk is assigned.
o Men who have sex with men: People whose transmission category is classified as
male-to-male sexual contact include men who had sexual contact with other men
o Men who have sex with men and injecting drugs: Transmission in this category
is classified as male-to-male sex and injecting drug use. Men in this category are at
high risk of contracting HIV.
o Injecting drug use: Transmission in this category is classified as injecting drug use
by people who receive an injection, either self-administered or given by another
person, of a drug that was not prescribed by a physician for this person.
Heterosexual contact with person from high prevalence country: Transmission
in this category is classified as having sexual contact with a person originating from
a country where HIV prevalence is 1% or more in the general population. HIV
prevalence is the percentage of the population living with HIV.
o Heterosexual contact: People whose transmission category is classified as
heterosexual contact are those engaging in sexual contact involving a man and a
woman.
o Vertical transmission: Transmission of the HIV virus in this category may occur
across the placenta barrier or through direct contact during or after birth and in the
breast milk during breast feeding.
o Blood products: Transmission in this category occurs as a result of transfusing
HIV contaminated blood or blood products. HIV infection resulting from blood
transfusion has been documented repeatedly since the first case report in late 1982
(116). In the United States, almost all cases diagnosed in the early 80s were due
to blood transfusion. In most resource-rich countries, testing of donated blood for
HIV antibodies was not immediately initiated for a variety of reasons. Australia and
USA began HIV antibody testing in March 1985, France began HIV antibody testing
in June 1985, Canada began testing in November 1985, and Switzerland began
testing in May 1986. Germany inconsistently tested plasma products between 1987
and 1993, as did Japan in 1985 (45).
Australia also has a separate surveillance system to monitor perinatal exposure to HIV
infections and outcomes. The Australian Paediatric Surveillance Unit is response from
57
identified any infants/children (up to age 15 years) which may have been exposed to
HIV through pregnancy/ birth and reports this information along with the intervention
utilised to prevention transmission and mother details to the Kirby Institute. The Kirby
Institute then confirm the mother has been previously diagnosed and recorded on the
national registry, and any new infections in children are also recorded (45). From the
information above, two key outcomes are included in surveillance reports; perinatal
exposure to HIV and perinatal infection.
Perinatal exposure to HIV (Child) refers to a child exposed to HIV during the
perinatal period and perinatal infection refers to exposures which lead to HIV infection
in the child.
A number of clinical sites have been established that have a particular focus on those
at increased risk. These sites include general practices which specialise in MSM’s
health, sexual health clinics and family planning clinics. Since 2007, the use of routine
testing in primary health services, as a basis for surveillance and monitoring has
expanded as part of the Australian Collaboration for Coordinated Enhanced Sentinel
Surveillance of Sexually Transmitted Infection (ACCESS) project, to include a large
number of sites. (117)This project aims to provide a comprehensive surveillance
system to capable of measuring changes in testing patterns, incidence and prevalence
over time (117). The ACCESS project focuses on collecting surveillance data to
describe patterns of STI and BBV testing and positivity in a range of priority
populations, including, young heterosexuals; Men who have sex with men, people who
inject drugs, CALD migrant communities; Aboriginal and Torres Strait Islander people
Indigenous people; and female sex workers (117).
58
Repeated periodic behavioural surveys are also conducted in gay men and repeat
cross-sectional prevalence and behavioural surveys in people attending needle syringe
programs. The Gay Periodic Survey is a cross-sectional survey of gay men recruited
at community events. Conducted annually since 1996, the survey is a paper based
self-completed questionnaire (118). The objective of the survey is to provide data on
sexual behaviour, drug use and HIV testing patterns among this population group
(118).
The Australian Needle and Syringe Program Survey (ANSPS), which is conducted over
a one to two week period annually, provides prevalence estimates of exposure to HIV
and hepatitis C (119). The purpose of the survey is to monitor sexual and injecting
behaviour among people who inject drugs. The survey consists of a brief self-
administered questionnaire and the provision of a finger-prick sample of blood to test
for HIV and hepatitis C (119).
The National Prison Entrants’ Blood borne Virus and Risk Behaviour Survey 2004,
2007, and 2010 is a consecutive cross-section of prison entrants over two weeks
during October. The survey monitors the prevalence of HIV, hepatitis C, hepatitis B,
sexually transmissible infections, and risk behaviours among Australian prison entrants
(120) . The survey is designed to be administered to run at the same time as with the
NSP survey to minimise overlap of participants between the two surveys. The survey is
administered to prisoners upon first entry to prison at the reception sites. The survey
consists of a short questionnaire followed by collection of a blood and urine samples.
The survey is planned to be carried out upon entry into prison at reception in
conjunctions with other routine health checks with voluntary participation of the inmates
(120).
The Australian secondary schools survey has been carried out at regular intervals
approximately every five years since 1992. Recruitment for the study participants was
on online advertised via face book. The 5th Australian secondary school survey was
done captures information sexual behaviour and sexual attitudes of students in years
10, 11 and 12 at Government, Catholic and Independent schools across all states in
Australia (121).
The Australian study of health and relationships (ASHR) is the largest survey on sexual
and reproductive health with over 20 000 men and women aged 16–69 years were
recruited (122). The Second Australian Study of Health and Relationships surveyed a
representative sample of 20 094 Australians using random-digit dialling of landline and
59
mobile phones in 2012–13 (122). The study is conducted once in every 10 years; the
first survey was done in 2001-2002 and the second survey in 2011-2012. Sexual health
behaviour and changes over time are analysed for assessment of behaviour changes.
The study provides information essential for the development of policy and the delivery
of sexual and reproductive health programs across Australia, and for understanding
Australia’s sexual culture (122).
There has only been one survey in Australia in NSW conducted in 2006 – 2008
specifically among four CALD migrant communities, and thus would not qualify as
surveillance. In order to understand HIV acquisition in this population group, routine
surveillance is needed in this population.
60
Chapter 2: Methods
61
Also as the events are repeatable, there is potential for the survey to be undertaken
more regularly, enabling trends in knowledge and testing behaviour to be monitored
over time.
A number of different survey designs were considered for this study. Surveys which
aim to obtain a random sample of the population are often more costly and complex to
administer, and conducted infrequently. Population-based survey generally involve
posting surveys in the mail with reminders; random digit dialling; or house-to-house
door knocking (126). Surveys delivered by mail have been shown to have a very low
return rate, unless the topic is very relevant for the community being surveyed.(127)
Surveys administered by phone are expensive (127) and for CALD populations
translators need to be employed. Also identifying the required CALD populations by the
phone book would not be feasible. For this type of a survey, such a list is difficult or
impossible to compile because of the diversity of the population (124).
A paper-based survey was selected for this study. The main advantages of this method
is that it provides more valid responses than if participants are interviewed, particularly
for sensitive topics such as sexual health (127). Also self-administered surveys enable
translation to a variety of languages more easily. Other advantages include low cost,
and no need to train interviewers. Disadvantages included data entry, the reliance on
the participants understanding the question, ensuring translation is accurate, and the
inability to have electronic skips, which for computer surveys often minimises the time
taken to complete the survey and means participants do not need to view questions
that are unrelated (128). For example if a participant was not sexually active, in a
computer survey, they would not view any further questions on this topic. However in a
paper-based survey, these are still visible. This issue is important, particular for young
people; to avoid exposure to topics they may not have yet experience (85, 127, 129).
Other administration options that were considered but rejected were interview-
administered methods, as it often results in interview bias and under-reporting of
sexual risk behaviours. Computer assisted survey instruments (130) was another
option which is becoming more popular. This particular method is only feasible to
people who are computer literate, which is not always the case with the majority of the
CALD population (124).
62
Ethical approval
Ethical approval was received from the University of New South Wales. (Reference
HC11453)
The survey was overseen by a reference group consisting of representatives from the
Kirby Institute, the NSW Multicultural HIV/AIDS and Hepatitis C Service, the Centre for
Social Research and Health, the HIV & Related Programs Unit, Nepean Blue
Mountains & Western Sydney Local Health Districts, NSW Health, Monash infectious
diseases, Monash Health; ACON (NSW HIV community organisation); Community HIV
Services (Positive Central & Heterosexual HIV Service) and the Australian Federation
of AIDS Organisations(AFAO).
In addition during the design phase separate meetings were held with community
organisations, welfare organisations and migrant resource centres. Community
reference groups were established. These were made up of representatives from each
of the six CALD study populations, to secure community endorsement of the study, to
provide advice on appropriate community events, and to provide on-going community
liaison throughout the study period.
Target population
This cross sectional survey focused on Sub Saharan Africa and South-East Asian
populations living in NSW. The focus was on these regions, because a large proportion
of heterosexual diagnoses in Australia are in people from CALD backgrounds, with
75% from countries in people from Sub Saharan Africa and South-East Asia (2). HIV
diagnoses among people from Sub Saharan Africa and South East Asia have been
increasing yearly over the last decade (2).
Countries selected for this study were: Thailand, Cambodia, Zimbabwe, Ethiopia,
Sudan, and South Africa, based on Australian HIV notification rates (Table 6). Average
annual diagnoses per 100 000 populations and population size in Australia were
calculated for the period 2001 – 2010 (see Table 6). People aged 16 years and older,
born in or with parents born in the target countries, were eligible for inclusion in the
study. The inclusion criteria were not enforced at the community events as some of the
events included a range of communities and it was important not to stigmatise specific
communities. Instead people who did not meet the inclusion criteria were removed from
63
the analysis (see data management section). The survey was implemented in NSW as
approximately 30% of the population are from CALD backgrounds (131).
64
Table 7: Heterosexually acquired HIV diagnosis in people from high HIV prevalence
countries, Australia, 2001-2010 (132) .
65
2.2 Questionnaire design
This current survey was designed in collaboration with a steering committee and
community reference groups and aimed to build on the previous one. Key differences
between the current and previous surveys are described in Table 8. The current survey
focused on six countries (the four in the previous survey plus Zimbabwe and South
Africa). The current survey omitted most questions on HIV related stigma and
discrimination and concentrated on transmission risk in order to assess risk behaviour
and attitude towards condom use, but included additional questions related to sexual
behaviour, partner type, condom use, barriers to condom use, and barriers to HIV
testing and self-reported HIV status. New questions were also sourced from the Bass
Line survey in the United Kingdom (38). The survey was distributed to experts and
researchers in the field of HIV to assess face validity
66
An English version of the survey can be found in the Appendix. The table below gives a
comparison of the two CALD surveys ever done in Australia.
Pilot testing
A formal pilot study was conducted with at least three members of each community
reference groups from each of the six CALD target populations. Participants were
chosen because they were either co-workers workers from Multicultural HIV Services,
community leaders or bilingual workers from various health departments. Each pilot
included male and female participants. A total of six pilot sessions were completed.
The pilot study involved the community members undertaking the survey and being
asked the following questions:
67
1. What do you think about the way the questions in this section are
structured?
2. Is the language appropriate and easy to understand?
3. Are the questions in this section easy to interpret?
4. Is the language and wording culturally appropriate?
5. Do you think the question around stigma and HIV infection will be properly
understood?
6. Are the questions in this section regarding sex and condom usage
appropriate?
7. Is the wording culturally acceptable?
8. Do you think the questions around sexual orientation will create a positive
and truthful response among communities?
9. Are the questions about casual and regular sex partners clear and
understandable?
10. Are the questions around HIV and travel clear?
11. Are the choices around HIV testing clear and understand able?
The facilitators of the pilot testing also observed the time taken to complete the survey.
General feedback
All participants emphasized the need to maintain privacy and confidentiality due to the
stigma associated with HIV among community members. This concern was echoed in
a number of the suggested changes to the questionnaire.
Who is eligible?
All participants noted that there was need to explain why these groups were being
targeted to avoid feelings of stigma. E.g. “there is a growing HIV epidemic in Australia,
including in NSW, among these communities and we want to understand the reason in
order for governments to provide better public health services for these communities”
All participants suggested that further detail on ethical clearance and confidentiality
should be added. Where possible, list details of legislation, as this would alleviate
concerns for these communities E.g. (The Commonwealth Privacy Commissioner in
accordance with the Privacy Act, 1988; NSW State Privacy Commissioner in
accordance with the Health Records and Information Privacy Act, 2002.)
68
Questionnaire length
All participants took longer on the HIV/sexual history questions than the
demographic/health service questions. Female participants took longer on the condom
use questions. The average time taken to complete the survey was twelve minutes. All
participants felt that the length of the questionnaire was reasonable.
Socio-demographics questions:
Some participants felt that some respondents may not understand the concept of
postcode, and that they may be more familiar with the term ‘suburb’.
There was a general consensus that ‘transgender’ might not be the most appropriate
term for all communities. There may be a more appropriate word for each community,
so the questionnaire could be tailored. The general feeling was that some terms like
this might be difficult as they did not necessarily translate into one word.
Some participants felt that men would answer this question more honestly than women,
because women may fear that other people would see their responses. Again this
highlighted the need to reinforce the confidentiality of the questionnaire. All participants
felt that respondents would not have any difficulty answering these questions.
Sexual and other risk behaviour such as travel to home country and sex while there
It was unclear what ‘steady partner’ meant, and therefore a clear definition had to be
included alongside the question.
Some participants felt that many people in their community had chronic or ongoing
conditions that required frequent doctor’s appointments and that people needed an
option greater than twice a year. The co-workers felt those with chronic illnesses visit
their doctors at least every month e.g. people on HIV medication can only get a
monthly supply of medication in some cases especially if they those without Medicare.
Another suggestion was to add “Language barrier” – it was felt by all participants that
this was a common reason for not going to the doctor.
Participants suggested adding another question to distinguish HIV test in Australia from
HIV test overseas.
Other than the above, participants felt that respondents would not have any difficulty
answering these questions.
As a result of the pilot test, and in consultation with the community reference group and
the project’s steering committee, language barrier was identified as an issue of
concern. The questionnaire was translated into four different languages namely
Sudanese Arabic (one of the official Sudanese languages), Khmer (The official
language of the Cambodians, Amharic (the official language of Ethiopia) and Thai (the
official language of Thailand). Dinka is widely spoken in Sudan, however this language
has never been officially known as a written language. Efforts were made to translate
the questionnaire into Dinka, but no professional translator was found. Translation was
done by accredited external translators. Each of the translations was checked by the
community reference group members to ensure accuracy, readability and cultural
appropriateness. English versions of the questionnaire were also available, to give
participants the choice of completing the survey in English.
After translation and the rechecking process were complete, the survey was distributed
again to experts and researchers in the field of HIV for comment, construction and
validity. Organisations consulted included:
o The HIV & Related Programs Unit, Nepean Blue Mountains & Western Sydney
Local Health Districts, NSW Health
o Centre for Social Research in Health
o Monash infectious diseases, Monash Health
o Multicultural HIV and Hepatitis Services
o ACON
o Community HIV Services (Positive Central & Heterosexual HIV Service)
o Australian Federation of AIDS Organisations (AFAO)
70
Endorsement was granted by the event organisers for distribution of the survey.
71
Sample size
The aim was to include at least 100-200 participants from each community, to ensure
the final sample represented a range of CALD groups. We also aimed to achieve a
balance of males and females, by using both male and female recruiters at the events.
Participants had to be aged 16 years and older, born in or have parents born in Sub
Saharan Africa or South East Asia, with priority given to any of the six countries
mentioned.
Core workers from Multicultural HIV and Hepatitis Service (MHAS) provided support in
implementing the survey at each event. Below is the protocol followed prior to each
community event:
Inform MHAS of any intended event
A phone call to the event organisers
A face to face meeting with the organisers, to seek verbal approval to conduct
the survey at the event
If attendance verbally approved, a follow-up letter was send confirming our
attendance at the event and the details of the survey.
Survey recruiters
72
workers on study procedures including; (i) the rationale for the survey and the target
countries; (ii) communication skills aimed at encouraging voluntary participation; (iii).
What information to convey to participants, including letting them know the surveys
were in multiple languages; and (iv) maintaining confidentiality at all times.
Survey preparation
1. Dress code
Uniformity with the banner colours and theme
Any one helping at the event to wear a UNSW T-shirt and a name
tag for identification
2. Goals and objectives of the survey
A brief explanation on the goals and objectives of the survey
3. Participation
Participation of the community members at each event is free and
voluntary without any cohesion.
4. Communication
The use of simple standard formal language (English/local local)
when communicating with participants at all times.
Participant information sheet should be read by each participant
before they chose to fill in the survey.
5. Choice of language
The survey is available in local languages and English, and participants
will have a choice of filling in the survey in a language they are
comfortable with at each event
6. Willingness to participant
The questionnaire will be given only to participants who voluntarily
chooses to participate
7. Confidentiality
73
Survey staff should conform, observe and maintain confidentiality of
participants at all times
A ballot box and envelops will be provided to put the questionnaire after
completion
The community reference group continuously liaised with the university regarding
appropriateness of the events and the proper channel of communication to seek
approval for participation at each event. They provided advice on relevant repeatable
community events and on issues relating to cultural norms and values necessary to be
observed at each community event. They were present at each event to ensure the
survey roll out on the day of the event was smooth.
Recruitment procedures
The surveys roll out commenced from June 2012 to January 2013. Potential
participants were approached by survey administrators and offered the opportunity to
complete the survey. People who expressed an interest were provided with an
information sheet, and hard copy of the survey to complete. Participants were given
the option of completing the survey in English or a local language version, where
applicable.
A sausage sizzle and other refreshments were provided to survey participants. Below
are some pictures taken at some of the survey recruitment sites:
74
Figure 8: Pictures taken from a soccer tournament event
75
Figure 10: Pictures of the banner taken at a soccer tournament event with some of the
soccer players
Figure 11: Pictures of some of the survey helpers taken at a Cambodian cultural
festival event
“I have been given the opportunity to read the information sheet or have had someone
explain the nature of the study to me. I agree to participate in this survey. I understand
that information about my identity and personal details will not be collected. Information
will remain completely confidential and anonymous at all times.”
A lockable survey drop box was provided for participants to put their completed survey
in. The box was transported sealed to the University New South Wales for counting.
Incentives: Participants were given a University bag scripted; ‘never standstill’, with a
fridge magnet, a notebook and pens to reimburse them for their time completing the
survey.
77
Figure 12: A picture of one of the researchers handing out incentives to survey
participants
After each event, returned surveys were reviewed by members of the research team,
including checking for any that were incomplete. Each completed survey was entered
on a country specific spread sheet to keep track of the total number of respondents and
the proportion of male and female respondents.
Data management
Paper-surveys were compiled and sent to a data entry company, where the findings
were entered in an excel file and returned to study investigators. The excel file was
stored in a password protected file.
Data analysis
Data were analysed using STATA 12. Respondents’ were included in the analysis if
their country of birth or the country their parents came from was one of the target
countries identified above. For each question of the survey, results were tabulated by
age-group and sex. Chi-squared analyses were conducted to compare the proportion
male and female respondents identifying modes of HIV transmission, condom use with
78
steady and non-steady partners, and HIV testing. A t-test compared the mean correct
HIV transmission score between males and females. A p-value of 0.05 was considered
significant. Data were not analysed by country of origin.
79
Chapter 3: Results
The results are categorised into the following topic areas in this section:
3.1 Demographics
Study population
A total of 1,406 respondents completed the survey; at least 200 were recruited from all
communities with the exception of South Africa (n=142) and Ethiopia (n=132).
Respondents from Thailand, Cambodian, Zimbabwean, and Sudanese made up
approximately a fifth of the sample size each, with South Africa and Ethiopia
contributing around 10% each (Figure 13). The median age of respondents was 30
(minimum 16, maximum 89), with an older median age for Cambodian respondents
(38) and younger for Sudanese (24) (Table 10). Just over half of participants were
female (53%), with the exception of South Africa with 70% female respondents and
Cambodia with 46% female. The median time since arrival in Australia was 10 years
(inter quartile range 7-13), increasing to 23 years for Cambodian respondents. Figure
13 and table 10 below gives a summary of survey respondents and key characteristics
from each community.
80
Figure 13: The proportion of survey respondents from each community
Ethiopia,
9% (n=132)
Sudan,
18%
(n=248) Cambodia,
21%
(n=292)
Zimbabwe,
20%
(n=287)
Language Median
Median age other time in
Number of
Country (years) % female than Australia
participants
[range] English (years)
at home [IQR]
Thailand 305 31 [17-60] 56% 86% 11 [6-13]
Cambodia 292 38 [16-89] 46% 85% 23 [13-29]
Zimbabwe 287 30 [16-68] 52% 76% 8 [6-10]
Sudan 248 24 [16-51] 48% 97% 8 [7-10]
South Africa 142 30 [16-63] 70% 52% 12 [8-14]
Ethiopia 132 30 [16-60] 58% 88% 11 [7-15]
Overall 1 406 30 [16-89] 53% 82% 10 [7-13]
81
Religion
Christian 46%
Buddhist 40%
8%
Religion
Muslim
Other 4%
No religion 2%
Jewish <1%
0 10 20 30 40 50
Proportion (%)
Education
Over 90% of respondents had completed at least high school education, with 30%
having completed a university degree (Figure 15). Only a small proportion (7%) either
had no formal education or completed their education at the primary/elementary school
level.
82
Figure 15: Respondents’ highest level of completed education
50%
40%
30%
20%
10%
0%
A diploma
Elementary A university
None High school or technical
school degree
college
Level of education 1% 6% 30% 34% 30%
Employment status
The majority of participants were engaged in some type of employment (71%); either
full time (41%), part time (19%), casual (7%), or self-employed (5%) (Figure 16). A
further 31% were studying, with 22% full time students and 9% in part time study. A
smaller proportion (15%) were unemployed, with 4% unemployed an on benefits, 8%
unemployed and not on benefits, and 2% not able to work due to visa restrictions.
Participants were able to check more than one response. Figure 16 gives a summary
of employment status of respondents.
83
3.2 HIV knowledge and attitudes
This section described respondents’ knowledge of HIV transmission risk factors, and
attitude towards people living with HIV. A minority of survey respondents (21%)
correctly identified all give modes of transmission. The proportion identifying each
correct mode ranged from 42% for mother to child transmission, up to 84% for sexual
contact. Results indicate that while the majority of respondents generally had positive
views towards people living with HIV, a proportion still expressed negative attitudes.
HIV transmission
A fifth of survey respondents (21%) correctly identified all five modes of HIV
transmission, increasing to a quarter of females (25%), compared to 16% of males
(Figure 17).
100%
90% 16% 21%
25%
80%
70%
60%
50%
40%
30%
20%
10%
0%
Males Females Total
0 correct 1 correct 2 correct 3 correct 4 correct 5 correct
84
Over 80% of respondents correctly identified that HIV could be transmitted through
sexual intercourse, 74% through injection, and 70% through blood transfusion (Figure
18). Less than half of respondents identified child birth or breastfeeding as a mode of
transmission (Figure 18).
In line with the overall number of correct responses, knowledge of HIV transmission
differed by sex (Table 9). Females were significantly more likely to correctly identify
modes of HIV transmission (Table 9). There was no difference between males and
females in the identification of incorrect modes of HIV transmission. The mean correct
score of 3.4 ±1.45 for female respondents was significantly higher than that of males
(2.9 ±1.40, p<0.001).
Sharing food and drink with an HIV infected person was incorrectly identified as a
mode of transmission by 17% of respondents. A further 15% also selected kissing as a
mode of transmission (Figure 18). A smaller proportion of respondents indicated a
mosquito bite (7%), shaking hands (4%) and sharing clothes (3%) were a risk factor for
HIV transmission. Table 11 gives a summary of Identification of modes of HIV
transmission, by sex.
85
Table 11: Identification of modes of HIV transmission, by sex
n % n % n %
Correct mode Through injection with a needle used by another person 1 026 74.4 443 68.9 583 79.2 <0.001
of HIV
transmission Through sexual intercourse 1 153 83.6 518 80.6 635 86.3 0.004
Through being born to a mother who is HIV positive 578 41.9 236 36.7 342 46.5 <0.001
Through blood transfusion 964 69.9 416 64.7 548 74.5 <0.001
Through sharing clothes with an infected person 40 2.9 19 3.0 21 2.9 0.911
Through sharing food and drink with an infected person 201 14.6 81 12.6 120 16.3 0.052
86
Attitudes to people living with HIV
A higher proportion of respondents reported positive attitudes to people living with HIV
compared to negative attitudes (Figure 19). Over half (57%) of respondents felt that ‘It
was not their fault, anybody can be infected’, 39% that ‘They should be able to enter
Australia to live and work’, 37% that ‘They deserve support and not condemnation’. A
small proportion answered with more negative attitudes. Less than a quarter (22%)
said ‘They cannot have healthy children’, 19% ‘It is their fault they have the disease’
and 15% ‘They cannot safely have sex with anybody’. There were not any major
differences in responses by age group or sex. Figure 19 gives a summary of
respondents’ attitudes to people living with HIV.
57%
It is not their fault, anybody can be infected
They should be allowed to enter Australia 39%
to live and work
They deserve support and not 37%
condemnation
22%
They cannot have healthy children
19%
It is their fault they have the disease
Responses
15%
They cannot safely have sex with anybody
8%
They should not get married
They should live in separate houses from 6%
other people
They should eat separately from other 5%
people
They are immoral and deserve no 4%
sympathy
2%
Other
0 10 20 30 40 50 60 70
Proportion (%)
87
3.3 Sex and relationships
This section focuses on the sexual behavior questions in the survey. Section three of
the survey asked questions about sexual activity and relationships of respondents.
Questions included condom use with steady and non-steady partners, travel to and
sexual activity in their home country or country of their parents, and condom use while
there.
The majority of respondents (80%) had sexual intercourse in their lifetime, with 87%
reporting sex in the last 12 months, and 13% more than a year ago. A fifth (20%) of
respondents reported never having had sex. Sex in the last twelve months was lowest
in females aged 16-19 (19%), compared to 53% in 16-19 year old males (Figure 20).
The majority of 16-19 year old females reported never having had sex (79%, n=130),
compared to 40% of 16-19 year old males (n=32). Over 80% of male and female
respondents aged 30+ reported sex in the last twelve months.
The majority of men identified as only having had sex with women in the last twelve
months (88%). Similarly for women, 93% responded that they had only ever had sex
with men. Half of men (53%) and two thirds of women (60%) reported one sexual
partner of the opposite sex in the last twelve months (Figure 21). A significantly higher
88
proportion of males (42%) reported multiple sexual partners of the opposite sex (>1) in
the last 12 months, compared with 28% of females (p<0.001, Table 12).
Figure 21: Number of sexual partners of the opposite sex in the last twelve months, by
sex
70%
60%
Proportion (%)
50%
40%
30%
20%
10%
0%
None One 2-5 6-10 11 or more
Number of opposite sex sexual partners
Males Females
Table 12: Number of sex partners of the opposite sex in the last twelve months, by sex
Overall 64% of sexually active participants reported they had a steady partner (Figure
22). Two thirds of females reported a steady partner of the opposite sex (59%), with
2% reporting a same sex steady partner (Figure 22). Almost the same proportion of
men reported an opposite sex steady partner (58%), with 9% reporting one or more
male steady partners (Figure 22). A small proportion reported more than one steady
opposite sex partner (5% of both males and females). Less than one percent of
respondents reported having both a male and female steady partner.
89
Figure 22: Number of steady partners, by sex
60.0%
50.0%
Proportion (%)
40.0%
30.0%
20.0%
10.0%
0.0%
No Yes, one Yes, more Yes, one Yes, more Yes, male
male steady than one female than one and female
partner male steady steady female steady
partner partner steady partners
partner
Males Females
Of those with a steady partner, just under a fifth (17%) always used condoms, 27%
used condoms inconsistently, and 56% never used condoms (Figure 23). Females
were more likely to report never using condoms (61%) compared to males (51%).
There was a significant association between condom use and sex (p=0.005), Table 10.
Those aged 16-19 were more likely to report always using condoms (52%) than other
age groups, increasing to 75% if including condom use more than half the time. Figure
23 gives a summary of condom use with a steady partner, by sex. Table 13, gives a
summary of statistical significants of condom use with steady partners, by sex.
100%
80%
51% 61% 56%
60%
40%
32% 21% 27%
20%
17% 18% 17%
0%
Male Female Total
Always Inconsistent Never
90
Table 13: Condom use with steady partners, by sex
n % n % n %
The main reason for not using condoms with a regular partner was being part of a
steady relationship (73%). (Figure 24) Those aged 40+ were most likely to give this as
a reason (82%) compared to 59% of 20-29 year olds. Almost a quarter of males
reported that condoms were unnatural, compared to 14% of females. While 9% of all
respondents reported that condoms were unavailable at the time, this increased to 43%
of 16-19 year olds.
Figure 24: Reasons for not using condoms with steady partner
73%
I am in a steady relationship
19%
Condoms are unnatural
13%
Difficult to bring up the topic of condoms
12%
Condoms make sex less enjoyable
12%
My partner did not like condoms
11%
We are trying to get pregnant
9%
Condoms were not available at the time
0 10 20 30 40 50 60 70 80
91
A regular partner suggesting use of condoms was generally perceived to be a negative
thing, responses being it make them think their partner was suspicious of their past
sexual behaviour (43%), that it would make them feel insulted (30%) and that it would
make them suspicious of their partner’s past sexual behaviour (25%). Nearly (45%) of
male and (41%) of female respondents felt their partners were suspicious of their past
if they initiate condom usage (Figure 25).
Figure 25: How respondents would feel if their steady partner suggested using a
condom
Insulted 30%
Responses
Relieved 15%
Respondents were also asked how many people they had had sex with in the last
twelve months, other than a steady partner. Just under half of males (46%) and a third
of females (33%) reported sex with someone other than a steady partner (Figure 26).
This was more likely in males aged 20-29 and females aged 16-19.
92
Figure 26: Sex with a non-steady partner, by sex
80%
Proportion (%) 70%
60%
50%
40%
30%
20%
10%
0%
None One 2-5 6-10 11+
Number of non-steady partners
Males Females
Among males, 31% reported always using condoms with non-steady partners, 57%
inconsistent condom use, and 12% never used condoms. This compares to 23% of
females reporting always using condoms, 60% inconsistent condom use and 17%
never using condoms (Figure 27, Table 11).
100%
12% 17% 14%
90%
80%
Proportion (%)
70%
60% 57% 58%
50% 60%
40%
30%
20%
31% 28%
10% 23%
0%
Male Female Total
Always Inconsistent Never
93
Table 14: Condom use with non-steady partners, by sex
n % n % n %
Reasons for not using condoms with a non-steady partner varied by sex, with 43% of
men reporting it was difficult to bring up the topic, increasing to 64% among women
(Figure 28). Likewise 40% of women said that their partner did not like condoms, while
only 14% of men reported this as a reason for not using condoms. Males were more
likely (48%) than females (39%) to report that condoms were unnatural. Table 14 gives
a summary of the overall condom use with non-steady partners, by sex, which were not
statistically significant.
Figure 28: Reasons for not using condoms with non-steady partner
Reason for not using condoms
Other
Females Males
94
Attitudes towards condom use with non-steady partner
Similar to the suggestion of condom use with a steady partner, most respondents
(56%) felt that it meant their partner was suspicious about their past sexual behaviour.
In comparison, the next most common response was relief (39%). This was followed
32% saying it would make them suspicious of their partners past sexual behaviour. For
males relief was the third most common response, with suspicion about their partner’s
behaviour being second (35%). Female respondents were more likely to report relief
than males (48% vs 32%).
Figure 29: Reponses to question ‘If your non-steady partner suggested using a
condom how would you feel’
Other 1%
95
Travel to home country
The majority of respondents had visited the country their parents were born in, they
were born in, or a country near it (61%). Respondents aged 40+ years were most likely
to have travelled to a home country (78%), more than two times that of respondents
aged 16-19 (35%) Males aged 30-39 and 20-29 were more likely to have travelled
home compared to females. Figure 30 gives a summary of respondents travel to home
country or a country near it by gender and age group.
Figure 30: Travel to home country or a country near it by gender and age group
40+
Age group
30-39
20-29
16-19
Female Male
Over half of visits had taken place in the last twelve months (57%), increasing to 62%
for females. Respondents frequently reported visiting the country a number of times,
with 40% having visited 3-4 times (Figure 31). Younger respondents reported less
visits, with 32% of females and 48% of males aged 16-19 reporting one visit.
96
Figure 31: Frequency of travel to home country or a country near it, by sex.
5 or more times
Number of visits
3-4 times
Females
Twice
Males
Once
A quarter of males reported having sex with someone other than their steady partner,
while in the home country or a country near it, compared to 15% of females. Those
aged 20-29 were most likely to report sex in their home country (30%). Of those who
had sex in their home country, just over a third reported always using condoms (36%),
with females more likely to always use condoms (41%) compared to males (32%).
Condom use was highest among females aged 20-29 (47%), with males of the same
age reporting similar usage (45%). Figure 32 shows the cascade of travel home and
risk behaviour. When considering the proportion of the population potentially at risk of
having unprotected sex when at home, this equates to 56 of 652 males (9%), and 33 of
751 females (4%).
97
Figure 32: Sex and condom use in home country or country near it
Males Females
33 =4%
Inconsistent/never 56 (1)=9
used condoms %
All
participants 652 751
98
3.4 Health care access
This section focuses on questions related to HIV testing and health care access.
Roughly half of all participants (54%) indicated that they had ever had an HIV test.
The majority of participants (78%) had last tested for HIV in Australia. More than half of
the participants had their last HIV test when applying for permanent residency (54%),
less commonly because they wanted to know their status or as part of a regular health
check (14%). The reasons that made it less likely for participants not to test for HIV
were reported to be; having a steady partner, being scared of an HIV test, not liking
having an HIV test and they did not perceive themselves to be at risk, with differences
according to partner type. Participants with steady partners were less likely to test due
to having a steady partner, fear of a blood test, and the perception that they had done
nothing to put them at risk, whereas participants with non-steady partners were less
likely to test due to being scared about getting a blood test, fear about the HIV test
result and not wanting to have the discussion with their doctor.
Despite low testing coverage, most (73% of male participants and 67 % of the female
participants) visited the doctor once a year or more frequently. Almost half of
respondents identified time constraints (47%) and not thinking it was necessary (47%)
as the main reasons for not visiting the doctor, language barrier was the third most
common reason, with 18% of females and 20% of males reporting it as an obstacle to
attending the doctor.
The majority of respondents (92%) had a Medicare card, with 38% having a health care
card, and less than a quarter (23%) reporting health insurance other than Medicare.
There were no differences found by sex (Figure 33).
99
Figure 33: Health care and health insurance
100%
Proportion (%) 80%
60%
40%
20%
0%
Medicare Health care card Health insurance
Males 91% 41% 25%
Females 93% 36% 21%
Total* 92% 38% 23%
The main place that respondents sought treatment when sick was a doctor (84%). A
religious or spiritual leader was the next most common source of treatment (26%)
followed by the hospital (21%). Females were more likely to report seeking treatment at
a hospital than males (24% versus 18%) (Figure 34).
100%
90%
80%
70%
60%
50%
40%
30%
20%
10%
0%
Doctor (GP) Pharmacist Traditional Herbalist Hospital Religious or Other
healer spiritual
leader/pastor
100
Three quarters of respondents reported having a regular doctor, increasing to 78% for
females. Younger respondents were less likely to have a regular doctor, with 59% of
males and 69% of females aged 16-19.
100%
90%
29% 31% 30%
80%
70%
60% 20% 20% 20%
50%
40% 24% 15% 19%
30%
20% 34%
27% 31%
10%
0%
Male Female Total*
Less frequently than yearly About once a year
About twice a year More than twice a year
101
Figure 36: Factors which make it less likely for respondents to visit their doctor (GP)
Language barrier
Factors
Other
0 20 40 60 80 100
Proportion(%)
HIV testing
The last section of the questionnaire related to HIV testing, including ever having had a
test, timing, location and result of the previous test, and reasons and barriers to HIV
testing. The majority of respondents had ever had an HIV test (54%),(Figure 37) with
variation by sex and age group. Respondents’ identified a range of factors that made it
less likely for them to have an HIV test in the past. Most factors for not having a test
related to attitudes and perceptions of HIV testing, as against structural barriers.
Almost two thirds of respondents reported ever having an HIV test (Figure 38), with
non-significant differences by gender (Table 14), with 52.1% of males and 56.5% of
females ever being tested.
102
Figure 37: Ever tested for HIV-all respondents
100%
90%
80%
Proportion (%)
70%
60%
50%
40%
30%
20%
10%
0%
No Yes Not sure
Male 39% 56% 5%
Female 42% 52% 6%
Total 41% 54% 5%
Ever had an HIV test
Respondents aged 16-19 years were the least likely to report ever having an HIV test
(22% of males and 14% of females). Almost three quarters (73%) of those aged 30-39
had ever been tested for HIV (Figure 38).
103
Figure 38: Ever tested for HIV, by sex and age group
Age of respondent
Males Females
A fifth (20%) of respondents who had been tested for HIV reported their most recent
test was within the last year (Figure 39), increasing to 23% for males. More than half
(55%) reported an HIV test in 1-5 years, and 20% in more than 5 years. Over a third of
respondents aged 16-19 reported a test in the last twelve months, dropping to 13% for
those aged 40+.
100% 4% 6% 5%
90%
22% 18% 20%
80%
70%
60%
50% 51% 55%
58%
40%
30%
20%
10% 23% 18% 20%
0%
Male Female Total
Within the last 12 months 1-5 years ago
More than 5 years ago Do not know/unsure
104
The majority of survey participants (81%) were last tested for HIV in Australia and not
in their country of origin. The proportion tested in Australia decreased with decreasing
age, with 79% of 20-29 year olds and 64% of 16-19 year olds tested in their home
country. This compares to 81% of 30-39 year olds and 86% of participants aged 40+.
There was very little difference in the location of last HIV test by sex.
Of those who had ever been tested for HIV, 88% of the participants reported that their
last HIV test was negative, 4% were unsure of their result, and 8% reported the result
of their last HIV test was positive (8% males, 7% females).
The majority (58%) of respondents were last tested for HIV at the Doctor (General
Practice Clinic), 16% at a Sexual Health Clinic, and 10% at a hospital, with 16% tested
elsewhere. HIV positive respondents were twice as likely to have been tested at a
sexual health clinic (33%), compared to HIV negative respondents (15%) (Figure 40).
70%
60%
Proportion (%)
50%
40%
30%
20%
10%
0%
Doctor (GP Sexual Family Hospital Prison or Other
Clinic) health clinic planning juveline
clinic justice
centre
Location of last HIV test
105
Reason for last HIV test
Most participants reported an application for permanent residency as a reason for their
last HIV test (Figure 41), slightly lower for males than females (53% versus 60%).
Wanting to know their HIV status (19%) was the next most common reason for an HIV
test. Testing as part of a regular health check was only reported by 14% of
respondents.
Factors that made it less likely for participants to have an HIV test
Overall, having a steady partner (38%), being scared of a blood test (30%) and
perception of having done nothing to put them at risk (25%) were the main reasons that
made it less likely for participants not to test for HIV (Figure 45). Structural barriers
such as it costs too much (10%) and it is difficult to find time to get tested (9%) were
reported by a smaller proportion of respondents.
106
Figure 42: Reasons that made it less like to have an HIV test, all survey participants
Other 5%
When the analysis was restricted to participants who only had a steady partner, the top
three reasons were having a steady partner (51% males, 49% females), fear of a blood
test (30% males, 27% females), and fear of receiving a positive result (22% males,
17% females).
Figure 43: Factors that made it less likely to get an HIV test, respondents with a steady
partner, by sex
Other
107
When looking at respondents who identified having one or more non-steady partners,
the reasons for not getting tested shifted to being scared about getting a blood test
(43% males, 54% females), fear about the HIV test result (42% males, 46% females)
and not wanting to have the discussion with their doctor (26% males, 18% females).
Almost a quarter of men (24%) reporting a non-steady partner still reported their reason
for not getting a test was due to having a steady partner. Only fear about getting a
blood test was significantly different between males and females (p=0.033, Table 15).
Figure 44: Factors that made it less likely to get an HIV test, respondents with a non-
steady partner, by sex
Other
108
Table 16: Factors that made it less likely to get an HIV test, respondents with a non-steady partner, by sex
n % n %
Past reasons I have always had a steady partner 59 24.3 36 21.3 0.480
for not getting
an HIV test I do not like having blood tests 105 43.2 91 53.9 0.033
I have not done anything that would put me at risk 42 17.3 27 16.0 0.727
I am scared of getting a positive HIV test result 103 42.4 77 45.6 0.523
I do not like having a discussion with the doctor about 62 25.5 31 18.3 0.087
getting tested
109
HIV testing and health care access
Respondents who visited the doctor once or twice a year were more likely to have had
an HIV test (Table 16), with 55% reporting a test if they had visited the doctor once,
and 61% if visited the doctor twice a year or more. This compares to 44% of those
visiting the doctor less frequently than yearly.
Table 17: Frequency of doctors’ visits and the proportion ever tested for HIV
n % n % n % n %
110
Chapter 4: Conclusions and Recommendations
The survey also provided knowledge for Australia about gender differences in HIV
transmission knowledge in CALD communities. Although there was no major difference
between males and females in the identification of incorrect modes of HIV
transmission, the mean score for female respondents was significantly higher than that
of males ( p<0.001). The survey also provided important information with regards to
sexual behaviour, condom use and barriers to condom use in the migrant populations
by gender. There was gender differences associated with reasons for not using
condoms with a non-steady partner. Also a significantly higher proportion of males
reported multiple sexual partners of the opposite sex (>1) in the last 12 months,
compared to females (p<0.001). Finally, the survey has demonstrated some important
areas to focus future prevention strategies and has shown the feasibility of conducting
large-scale community surveys in these populations, providing a platform for repeated
behavioral surveillance.
111
The survey demonstrated that among the participants from the migrants populations
selected for the study, there were some important gaps identified in regards to
knowledge of common routes of HIV transmission. About only a fifth of survey
respondents (21%) correctly identified all five modes of HIV transmission. When
comparing males and females, a quarter of females (25%), compared to 16% of males,
correctly identified all five modes of HIV transmission .Between 16-30% of participants
were unaware HIV could be transmitted by sexual intercourse, injection, and blood
transfusion. Results stated 16% were unaware of transmission through sexual
intercourse, 51% unaware of transmission through breastfeeding and 58% unaware of
transmission through childbirth. Lower consistent condom use was reported in this
study compared to general population studies on condom use. Higher knowledge about
HIV transmission risks has been associated with condom use and HIV testing in other
studies (133, 134). Compared to other general population surveys done in Australia
(121), knowledge in this survey was low suggesting the need for further health
promotion among these communities to increase awareness.
The majority (58%) of sexually active participants in the survey reported they used
condoms inconsistently or never with non-steady partners and 28% of females and
42% of males reported multiple sexual partners in the last 12 months. Also there were
high rates of inconsistent condom use with non-steady partners (highest in women).
Known sexual behaviour risk factors for HIV/STI infection including inconsistent
condom use, particularly with new partners and having a greater number of sexual
partners.(135) In the Second Australian Study of Health and Relationships (ASHR2)
conducted between 2012 and 2013 among heterosexual people who had sex in the
past 6 months, 34% of women and 39% of men used condoms consistently with their
casual partners (136).
Barriers to using condoms varied by gender. Females more commonly reported it was
difficult to raise condom use with a partner or their partner did not like condoms. Males
more commonly reported condoms made sex less enjoyable were unnatural or not
available. These findings suggest gender imbalance in negotiating condom use. A
review of studies in Africa identified unequal power in sexual decision making, with
men dominating and women being disempowered (137). The review suggested women
may want to please their partner, who might believe that condoms will reduce sexual
pleasure and the use of condoms was associated with a perceived lack of ‘real’ love,
intimacy and trust (136). Other factors identified in the review included the fear of losing
112
one’s reputation, being seen as ‘loose’ and of violence or rejection by one’s partner.
For many women, condom usage was forbidden by their religious beliefs (138).
The survey also provided important findings on sex risk behaviour when CALD
populations are travelling back to their home countries. The survey demonstrated that
11% of participants who travelled back to their home countries reported unprotected
sex with a non-steady partner while there, however as a proportion of all respondents
this represents to 9% of males and 4% of females. Considering the high prevalence of
HIV in some of the target countries in the study, this potentially places participants at
high risk of acquisition of HIV. The associated between travel and unsafe sex and also
unsafe injecting behaviours has been frequently documented. For example a cross-
sectional survey of Vietnamese people living in Victoria who inject drugs, found nearly
half of participants travelled to Vietnam; 41% had injected drugs in Vietnam; and 12.5%
reported sharing injecting equipment in Vietnam (139). However, it is important to
recognise that health promotion related to travel needs to balance against the risk of
acquiring HIV in Australia. In the United Kingdom national HIV surveillance data
showed that about 10 years ago most HIV diagnoses among African were acquired
from the home country, but now 50% are acquired locally (40). Also in France, 50% of
HIV infections in African born were recently estimated to have been acquired after
arrival, with 35% reported in a separate study to be locally acquired (140).
As described in Chapter 1, people from Sub Saharan Africa and South East Asia have
disproportionate rates of late diagnosis as shown in surveillance. National surveillance
data indicate that about 58% of people diagnosed with HIV from Sub Saharan Africa or
South East Asia have a CD4 count of <350 (late HIV) suggesting they acquired HIV
infection 4-5 years earlier, but were never tested for HIV (45). A study by Lemoh et al,
showed in Victoria that people born in the Horn of Africa and South East Asia were 4
and 3 times more likely to have advanced HIV infection, respectively, than other people
diagnosed with HIV (141) . Some of the reasons for presenting late with HIV are
demonstrated in this survey with only about half of participants reporting ever being
tested, and only 20% tested in the last year. Of those who had tested ever, most were
due to permanent residency, and reasons for not testing was commonly related to lack
of perception of being at risk. Despite low testing rates, most participants had attended
a general practice clinic in the last year for some reason, suggested there were missed
opportunities for HIV testing. When restricted to the same community groups included
in the previous CALD survey in 2006-2008 (Thailand, Cambodia, Sudan and Ethiopia)
by the Centre for Social Research and Health, the proportion ever tested was similar
113
for females (59% females this survey 60% last survey) and slightly higher in this survey
in males (males: 48% this survey 40% last survey).
To increase HIV testing new initiatives may be needed. Health promotion to raise
awareness of the need for testing in Sub Saharan African and South East Asian
migrant communities is vital. Also strategies in general practice should be considered
as the participants reported frequent attendance at general practice clinics. A cluster
randomized trial in the United Kingdom, showed that an education program involving
opt-out rapid testing of new patients in general practice, was able to increase the
number of new HIV diagnoses, of which 63% were black African (142). Also strategies
outside of clinics may be needed. In the 2013/14 in the United Kingdom, the Terence
Higgins Trust foundation implemented a free HIV home-sampling program where gay
men or African people could register online to receive a home-sampling kit collect the
finger-prick blood sample at home and post back to the laboratory for 4 th generation
dried blood spot HIV test. Negative results were given within a week by text message
or positive result by phone with referral by Terence Higgins Trust to a HIV service
recommended. However only 10% of the home-sampling kits requested were among
the African population, however HIV positivity was close to 3% in the African
populations compared to about 1% among gay and bisexual men. This finding
highlights challenges accessing CALD populations for HIV testing using online
systems, and other strategies may need to be considered such as peer models. Peer
education for HIV prevention has been widely implemented particularly in developing
and has achieved positive effect (143).
In HIV health promotion, Peer models or peer education models have been known to
be effective in engaging CALD and other hard to reach communities. Peer education is
the sharing of knowledge among individuals who share common characteristics (e.g.
age or gender) or risk behaviours with a target group (e.g. commercial sex workers,
intravenous drug users or hard to reach communities) (143). Studies have indicated
that peer education interventions strategies have been successful for preventing HIV
and other sexually transmitted infections (STIs) particularly in developing countries.
(144)According to results of a systematic review done in Europe, peer education
interventions were effective in increasing HIV knowledge, reduced equipment sharing
among IDUs, and increased condom use (143, 145). Findings of this systematic
review, also suggested that peer education can be an effective strategy for changing
114
behaviour among hard-to-reach and hidden populations such as commercial sex
workers and CALD communities (144).
The survey also showed that about 8% of those who reported they had a test in the
past indicated their last result was positive. This is the first time we are aware of this
information being collected from migrant populations in NSW or Australia so we have
no other comparative estimates. We did compare the findings to the known prevalence
of HIV in the home countries of the participants (21), and the self-reported findings are
generally consistent. However it is possible that these findings are an over-estimation
due to responses biases, or and under-estimation, with studies in gay men showing
self-reported HIV status under-estimates true biological prevalence by about 50% due
to some men being unaware of their HIV status . Further studies to confirm the validity
of these findings by integrating HIV biological testing into future surveys at community
events or more private locations is needed. (143)
There a few potential limitations of this research study to consider. The analysis
included six migrant communities, and some of the communities had a larger sample
size than the others (Thailand=305 vs. Ethiopia=129) and thus the patterns in some
communities has the potential to influence the overall findings. However overall there
were around 600 participants from Asian countries and 800 from African countries.
Also while we plan to disseminate the aggregate findings to ensure acceptance of the
findings by the participating communities; we chose not to separate out data by
community. It is also possible that although the surveys were piloted and some
questions were misunderstood by participants, resulting in response biases. While a
paper-based format was used for this survey, it may be that an electronic survey would
provide more accurate responses, and piloting of this medium should be considered for
future studies. Finally, the study may not be generalizable to all people in the six
migrant communities in the target age groups, as recruited from community events,
which could select people more socially engaged.
In conclusion the survey has demonstrated some important areas to focus future
prevention strategies. The uptake of HIV testing, particularly recent HIV testing was low
in the communities involved in this survey, suggesting the need for initiatives to
increase testing. Also further education and health promotion initiatives may be needed
to address gaps in knowledge and condom use reported by participants and be tailored
to the male and females. Health promotion focusing on the importance of condom use
when at home and travelling is important. Finally the survey has shown the feasibility of
115
conducting large-scale community surveys in these populations, providing a platform
for repeated behavioural surveillance
116
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Appendix
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126
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128
Questionnaire
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Particfp~nt
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Assessing Hill knowledge, risk behaviour, health service usage and
130