PARTICIPATORY RESEARCH INTO HIVAIDS WITH AFRICAN COMMUNITIES IN AUSTRALIA

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PARTICIPATORY RESEARCH INTO HIV/AIDS WITH AFRICAN
COMMUNITIES IN AUSTRALIA

• Chris Lemoh
• Department of Medicine
• The University of Melbourne
• and
• The Burnet Institute

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WHERE WE ARE
Burnet Institute
Department of Medicine
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AFRICAN MIGRATION TO AUSTRALIA
1900s 1980s-1990s 2005-6
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AFRICAN AUSTRALIANS AND HIV/AIDS

• African-born Australians
• 9.6 of population
• 25 of heterosexually acquired HIV
• Late HIV diagnosis
• 60 of PLHA born in sub-Saharan Africa
• gt70 born in Middle East/North Africa

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TALKING ABOUT HIV/AIDS

• they don't know much about HIV, and the same
  time, they don't want to know

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PLANNING ISSUES

• Who is African?
• Nationality, language, race, religion
• Making contact
• Who? Where?
• Suspicion of research
• Why us? Who benefits?
• Reluctance to discuss HIV/AIDS
• Who will talk about it?
• Research and action
• Outcomes

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APPROACH

• Key individuals
• Project advisor
• Community links
• Research experience
• Discussion and engagement
• Horn of Africa community groups
• Reporting back
• Publication and presentation of results

• Research assistants
• Research experience
• Links with community groups
• Ethiopian
• Eritrean
• Oromo
• Somali
• Sudanese
• Egyptian (Coptic Orthodox)

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COMMUNITY STUDY

• Method
• 47 in-depth interviews
• 17 focus group discussions
• Audio recording
• Thematic analysis of interview transcripts

• Participants
• Community members
• Horn of Africa
• Egyptian
• Service providers
• Health
• Immigration
• Welfare
• Juvenile justice
• Religious leaders

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RESULTS

• Community education about HIV/AIDS
• Interpreter and support services
• Community involvement in research and practice

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AWARENESS OF HIV/AIDS IN AUSTRALIA

• They can see on the TV, you know... Africa,
  AIDS, you know... is rising, you know... But they
  not aware of, in Australia... They always see
  for... in Africa.
• Somali man
• there is a rare number of infected people in
  our community, and no-one know about them
• Sudanese health services provider

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PRE-MIGRATION HIV SCREENING

• The other point, the refugees screened and
  negative, sound like confident they don't protect
  until they come.
• Ethiopian men and women
• there is a period when the... from being
  infected with the virus until it really in your
  blood, so, it takes like six months, so some of
  them, you know? The gap is enough for them to
  come here, to Australia, and they just start to
  have pains, and so... you know, simple symptoms,
  and went to the hospital, and then discovered
  themselves HIV-positive.
• Sudanese Health services provider

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HIV/AIDS TRANSMISSION AND TREATMENT

• We have heard about all ways that disease to
  be transmitted from sick person. Like syringes,
  blades and sexual contact, if you used the same
  toilet that was been used by sick person with HIV
  or if the flies or mosquitoes sat in a wound and
  flew to another person's wound who is not sick,
  the person who sick will get HIV. We do not know
  if it is true.
• Sudanese men
• AIDS is a dangerous disease and killer too if
  a person infected it difficult to cure. We heard
  that there is medication, but it is still
  dangerous.
• Sudanese men

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CONFIDENTIALITY OF INTERPRETER SERVICES

• Confidentiality is questioned culturally. There
  is no perception that the interpreter has rules
  to obey, or is under obligation not to expose the
  secrets of others. They don't believe that what
  happens in the clinic stays in the clinic.
• Somali man

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INTERPRETERS AND HEALTH SERVICES

• if I have a sick kid or... what I'm going to
  do? How can I make the doctor understand... I
  came to the doctor now, "Oh no, you need
  interpreter".... Fifteen days later You got an
  appointment after fifteen days.
• Sudanese health services provider
• The language around hospital is different. And
  people say, Say it in English! It doesnt
  matter you speak English or not, you need someone
  who make clear understanding, whats going on.
• Ethiopian woman

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BENEFITS OF PARTICIPATORY APPROACH

• Reach effective community social groups
• Frank discussion of sensitive topic
• Raised awareness of HIV/AIDS in community groups

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LIMITATIONS OF APPROACH

• Community politics
• Involve some groups, not others
• Selective involvement of communities
• Perspectives authentic but not representative
• Qualitative data only
• Reveals important issues but cannot quantify

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FUTURE COMMUNITY INVOLVEMENT

• Formulation of policy on HIV/AIDS
• Development of community education materials and
  strategies
• Training and delivery of health services

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RESEARCH INTO ACTION

• A lot of government and non-governmental
  organization, they do a lot of research, they
  asked question but nothing comes out. We need
  resource, education flow up, we don't want talk,
  talk, that's it.

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ACKNOWLEDGEMENTS

• Research Team
• Samia Baho
• Tenenet Taye
• Abraha Gebremariam
• Sahra Hussein
• William Malouk Daw
• Shangale Ali
• Shiraz Hakim
• Mohanad Hakim
• Neveen Hanna
• Rhiannon Palmer
• Rachel Tham

• Participating groups
• African Australian Welfare Council
• Family and Reproductive Rights Program
• Sudanese Community Association of Victoria
• Horn of Africa Senior Womens Group
• Dinka Jieng Community Council of Victoria
• United Somali Women
• Oromo Community Association in Victoria

Supported by a Project Grant from the Department
of Human Services and a scholarship from the
Centre for Clinical Research Excellence in
Infectious Diseases