1. Symposium HIV Testing for African Migrants Barriers to Voluntary Counseling and HIV Testing among Sub-Saharan African Migrants HIV- SAM Project Lazare Manirankunda, Jasna Loos, Thérèse Alou & Christiana Nöstlinger

2. Outline 1.HIV/AIDS among Sub-Saharan African Migrants (SAM) in Belgium 2.Qualitative study on the perception and barriers to Voluntary Counseling and HIV Testing (VCT) among SAM 2.1. Barriers 2.2. Design VCT services 3. Discussion

3. Sub- Saharan Migrants (SAM) in Belgium 64.329 SAM in Belgium * ( 6,6% of all foreigners) Male/ female ratio: 1  Heterogeneous group - Nationality/ ethnicity/ culture / religion - Cause and circumstances of migration - Residence: length/status - Socio-economic status - Educational level: many are highly educated  Hard to reach population - Scattered and mobile - Beginning organization: little social capital - Different languages/literacy * FOD Binnenlandse Zaken- Dienst Vreemdelingenzaken Persons with undocumented status not included in the statistics (2007)

4. SAM living with HIV/AIDS in Belgium Group with highest HIV prevalence in Belgium Since the beginning of the epidemic in 1986, 60,3% of all diagnosed persons are of a non-Belgian nationality*. Between 2003 and 2005, 76,5% of this group of non-Belgians was of Sub-Saharan African origin.* Female face Heterosexual transmission * Sasse, Defraye, Buziarsist, 2006 Of 26.4% of the patients diagnosed since the beginning of the epidemic the nationality is unknown.

5. SAM living with HIV/AIDS in Belgium (cont.) Present late for testing Median CD4 cell count (2001-2005)* SAM: 315 (female: 323, male: 307) Belgians: 441 Consequences of late diagnosis * : 1. Individual - Limits opportunities for accessing care - Risk of re-infection 2. Epidemiological - Risk of transmitting HIV to sexual partners (risk of onward transmission) 3. Socio-economical Significantly higher health care costs*  Promotion of Voluntary Counseling and HIV Testing among SAM is a public health priority * WIV, unpublished data (Sasse) * Burns et al., 2001, AIDS * Krentz et al., 2004, HIV Medicine

6. Promotion of Voluntary Counseling and HIV Testing among SAM Confidentiality must be guaranteed during the entire procedure 1. Pretest counseling - Informing about test process and implications of testing - Risk assessment and risk prevention - Coping strategies - Individual decision to test: informed consent 2. HIV Testing 3. Posttest counseling HIV positive HIV negative - news given - news given - risk reduction plan - risk reduction plan - support to cope with the diagnosis - discussion about disclosure - discussion about disclosure 4. Follow- up counseling and support Further differentiation between HIV- and HIV+ clients/patients * WHO/UNAIDS guidelines

7. Why promoting VCT? * 1. Reduces unidentified HIV infections In the European Union 1/3 of PLWHA are unaware of their status* 2. Enables clients to plan and cope with issues related to HIV/AIDS 3. Facilitates preventive behavior - HIV positive: Enables the client to protect their partner and a possible (unborn) child - HIV negative: Awareness acquired during pretest and posttest counseling helps clients to remain negative 4. Improves health conditions Early diagnosis enables early medical, psychological and social care and improves the health conditions of the patient 5. The Belgian government provides free medication * HIV/AIDS surveillance in Europe, 2005 * Burns et al, 2001, AIDS

8. Perceptions and Barriers of Voluntary Counseling and HIV Testing among African Migrants in Flanders A Qualitative Study

9. Objectives of the study Aim To explore the perceptions, barriers and needs of SAM in the area of VCT in order to accumulate evidence of how to promote VCT among SAM. Specific objectives - Determine the attitudes and perceptions of SAM, related to HIV testing in general and VCT in particular. - Determine the actual experiences of SAM with HIV testing. - Assess the decision making process when seeking VCT. - Determine the perceived facilitators and barriers for VCT.

10. Methodology Exploratory qualitative study Carried out between September 2006 and April 2007 Methodological approach: Grounded theory Data collection technique : Focus Group Discussions (FGD) Sampling - Purposive sampling: via key-persons of the HIV prevention network, one via a centre for social integration for newcomers (PINA) and one via a general practitioner of an asylum centre - Inclusion criteria: 1. Gender: male and female separate 2. Age: 18-49 years 3. Length of residence: residents, newcomers and asylum seekers 4. Language: English and French 5. Province of residence: Antwerp, East- Flanders and Flemish Brabant

11. Methodology (cont.) 8 Focus Group Discussions (FGD) - In settings frequented by participants - Introduction to the research - Informed consent and socio-demographic questionnaires - Tape recorded + note taker/observer - Topic Guide: 5 main questions 1. Comparison health care Africa-Belgium 2. Perception VCT 3. Experiences HIV testing 4. Barriers and facilitators VCT 5. Design cultural sensitive VCT services - FGD lasted: 90 to 120 minutes - Remuneration (per diem): 15 €/participant - Debriefing: researcher and moderator reviewed the discussion and possible problems that needed to be avoided in upcoming FGD

12. Methodology (cont.) Problems encountered during FGD - Groups of non-residents: concerns related to confidentiality with socio-demographic questionnaires - Organizational obstacle in recruitment: group of young people mixed Analysis - Grounded Theory: ongoing inductive analysis - Data: - After each FGD debriefing - Notes - Verbatim transcripts of FGD - Analysis of transcripts 1. First and second codes  categories 2. Manual analysis by two independent researchers 3. Comparison of results: discordant items after consensus retrained or rejected

13. Socio-demographic composition of the participants 70 participants in 8 FGD Gender: 53% women / 47% men Average age: women 26 years/men 33 years, > 62% of all women between 18 and 24 years 14 nationalities: 32% DR Congo, 28% Ghana 61% Protestant, 20% Catholic, 12% Islamic 62% single, 30% married Average residence duration of 8,5 years (women 9,4 years/ men 7,6 years) 76% highly educated 12% employed > Only men 83% health insurance HIV testing history - 65% has been tested (69% women/58% men) - 77% tested in Belgium

14. Results: Perception of VCT VCT is good…. - Knowing your health status - Protect yourself and your partner - Peace of mind: being sure - … but the barriers to HIV testing are greater

15. Barriers to VCT for SAM 1. Fears 1.1. Fear of Death 1.2. Fear of HIV related consequences 1.2.1. Fear of social rejection 1.2.2. Fear of deportation 1.2.3. Fear of restricted life 2. Lack of information 3. Health seeking behaviour: no preventive culture 4. Low perceived risk 5. “It is better not to know” 6. Lack of opportunity 7. Financial incapability

16. Barriers to VCT for SAM (cont./2) 1. Fears 1.1. Fear of Death - HIV= death HIV= slim >> Perception is grounded in combination of: - African experience - Non existence of a cure - Most are aware of life prolonging and improving medication, but: - You still carry death inside - Anticipated death - Medication reminds you of HIV “Any time you take the medicine, it reminds you that you have this dreadful disease, you see, it makes it difficult to go voluntary for it (female resident) ”

17. Barriers to VCT for SAM (cont./3) 1.2. Fear of HIV related consequences 1.2.1. Fear of social rejection External stigma*  Grounded in: the crossing of social norms*: HIV linked with sex : the unification of HIV with death  Boosted by: - Uncertainty of transmission: avoiding closeness to PLWHA “People will run from you, they will not want to touch you… ” (female resident ) - Stories about PLWHA intentionally transmitting HIV: confirm the stigma “People how know they are positive, they get angry and they spread it…they pay children” (female resident) Internalized stigma* of PLWHA - Feeling guilty - Isolation - Not disclosing * Goffman, 1971

18. Barriers to VCT for SAM (cont./4) 1.2.2. Fear of deportation “If you are positive, definitely they will deport you back to your own country” (male asylum seeker) Only mentioned in FGD with asylum seekers! 1.2.3. Fear of restricted life - Difficulties with finding work - Changing sexual practices: condom use > Secondary barrier: only mentioned in 1 FGD of residents

19. Barriers to VCT for SAM (cont./5) 2. Lack of information -Much misinformation, which increases fear and confirms the stigma ex: “ It’s lack of information. They think that if you drink of the same glass you get AIDS. They think that if you give a hand you get AIDS”. (female resident) -Lack of information about their rights - Doubts about entitlement to care “ I’m a refugee, if I go voluntarily to the clinic and I’m positive. The doctor will take care of me? I’m not a citizen. So what’s the use for me to go up there? It’s better for me not to know I’m positive. I can live my live as it was.” (male asylum seeker) - Doubts about legal rights: no deportation because of HIV -Lack of information about practical aspects of VCT - Why? - Where and when? - How? - Cost ?

20. Barriers to VCT for SAM (cont./6) 3. Health seeking behavior: no preventive culture - Cultural background “ Where I come from, we are not people to go to the hospital like that, unless the person is experiencing something in the body that is really bad.” ( young resident) Groundings: - Financial and geographical inaccessibility - Pluralistic medicine : traditional medicine - Religious beliefs - Migration context Health is only a priority to the one who is unwell. Otherwise issues around migration, housing, employment and childcare take priority* * Burns, 2007, AIDS care

21. Barriers to VCT for SAM (cont./7) 4. Low perceived risk Overestimation of risk of others, underestimation of personal risk > Optimism bias on perception of personal risk: Grounded in fear of stigma: people who cross social norms run risks “ Womanizers, runners, polygamous people and prostitutes get HIV ” 5. “It is better not to know” - “Those who run risks, don’t test” - Linked with fears - “You don’t want to know you are going to die” - “You don’t want to know you will be rejected” - “You don’t want to know your life will change” - Defense mechanism: denial

22. Barriers to VCT for SAM (cont./8) 6. Lack of opportunity - Most participants tested on initiative of the doctor: antenatal screening or pre-operative check up - Many people don’t dare to ask: fear of judgment >> If the doctor suggest an HIV test, many Africans are willing to do it 7. Financial incapability - Young people do not dare to ask their parents money for a test “Your mother will think you have done some bad things.” (young resident) - Africans who are illegal

23. Adapted VCT for SAM: respondents’ suggestions 1. Design of VCT services - Place - Discrete entering “ The Tropical Institute is becoming even a stigma now. If you enter it and you are black…. Oh HIV!” (young female resident) - More practical information - Quality of the service - Confidentiality - Counseling - “We need counseling, we need encouragement, we need education.” (male resident) - Welcoming - Appropriate follow-up

24. Adapted VCT for SAM: respondents’ suggestions (cont./2) 1.Design of VCT services - Rapid test vs. current test In favour “ If you go home without knowing the result. You can’t sleep, you become more sick ” But questionable if it can reduce barriers - Free test vs. current system of paying for the test In favor but questionable if it can reduce barriers, except for young people and illegal migrants - Incentives Caps, T-shirts, …

25. Promoting VCT among SAM 2. Informing and sensitizing - Using different media & African organizations - Taking into account the diversity of the African community - Oral tradition 3. Stigma reduction /normalizing HIV - Enable PLWHA to disclose without fear of rejection - Enable the community to talk openly about HIV

26. Discussion Aim of the Study Explore the perceptions, barriers and needs of SAM in the area of VCT in order to accumulate evidence on how to promote VCT among SAM

27. Discussion (cont./2) Perceptions, barriers and needs of SAM Our findings were in line with conclusions of other studies Little peer reviewed literature on the topic Burns et al., 2005, Sex Transm Inf; Burns et al., 2007, AIDS Care; Erwin et al., 2002, Sex Transm Inf; Fenton et al., 2002, Sex Transm Inf; Stolte et al., 2003, AIDS Care Contribution of our study to the literature - First study on the topic in Belgium - First qualitative study with community members - More detailed insides on the barriers - Suggestions on design of SAM adapted VCT services

28. Discussion (cont./3) Barriers not found in our study: - Concerns about the ability to have children (60%)* - Inability to access appropriate services* - Gender differences: men are less willing to seek medical help and to test for HIV* - Disclosure: fear the news will go back to the home country without being able to modify the impact* * Erwin et al., 2002, Sex Transm Inf * Burns et al., 2007, AIDS Care

29. Discussion (cont./4) How to promote VCT among SAM 1. Health care level 1.1. Existing VCT services Frequently not preformed according to VCT guidelines Respondents mentioned: - Not having received pretest counseling - Lack of posttest counseling 45.3% receives his diagnosis via telephone or mail* - Non-consented HIV test 18,1% of the tests on patients from endemic countries are non-consented* >> No preventive outcome >> Ameliorate the existing practice of VCT Because they meet the needs of SAM: counseling, confidentiality, informed consent & appropriate follow- up * Devroey, 2002, Family Practice * Van Casteren, 2004, Journal of Public Health

30. Discussion (cont./5) 1. Health care level 1.2. Provider initiated VCT - Evidence of study shows that: “If doctors actively propose HIV testing, most SAM will agree” - Important that the quality of VCT assured >> Promotion of Provider Initiated VCT Challenges: - Motivate doctors and enable them to implement the strategy - Not contributing to the stigma

31. Discussion (cont./6) 2. SAM community level - Interventions with the aim to inform and sensitize SAM to take up VCT > Communication training of voluntaries - Contribute to stigma reduction - Spread practical information on testing services

32. Conclusion There are major barriers for SAM to take up VCT but doctors can contribute to reduce these barriers by practicing Provider Initiated VCT. The SAM community has his own role in changing attitudes and behaviour towards HIV testing.

33. Acknowledgements Thanks to all the participants of the FGD, the key persons of the HIV prevention network, the teachers of PINA and the GP of the asylum center of Kapellen. Thanks to the Flemish government (public health and well-being), the province Antwerp and East-Flanders for the financial support to the project. … and thank YOU for listening!