Learning from the Experiences of Migrants accessing HIV services in Ireland

1. Learning from the Experiences of Migrants accessing HIV services in Ireland Maeve Foreman Social Work & Social Policy, TCD Immigration Initiative Conference 2007

2. Introduction • This talk draws on findings from two research projects • one conducted by social work team in St. James’s Hospital • the other by Trinity College Masters in Social Work student • Both are the subject of a recently published article • Learning from the Experiences of Ethnic Minorities Accessing HIV Services in Ireland Maeve Foreman; Heather HawthorneBritish Journal of Social Work 2006; doi: 10.1093/bjsw/bcl085 • Key point - policy in one area, i.e. immigration, has implications for health promotion and HIV prevention

3. Some facts • 40 million people living with HIV in world today • 25 million (63%) of those live in sub-Saharan Africa • More than half of those are women • Prevalence ranges from 1% to 33% of population • Biggest increase in new infections is in Eastern Europe and Central Asia – Ukraine has highest prevalence • New HIV cases in 2006 - 4.3 million total new cases, 530,000 of them children under 15 www.unaids.org

4. Background • With successful antiviral treatment mid 90’s HIV/AIDS changed from being a terminal illness to a potentially long term chronic condition in the western world • Coincidentally since 1996 increase in users of HIV services from outside EU, particularly from sub-Saharan Africa, • Since introduction of routine antenatal screening 1999 for HIV maternity hospitals a major site of first diagnosis for migrant women • Newly diagnosed HIV are relatively small % of migrants to Ireland but comprise growing % of those testing HIV+ in Ireland

9. HIV care • Nobody refused entry to Ireland because of HIV status • HIV clinic attendance and HIV drugs free • Beliefs, perceptions, assumptions impact on take up of hospital services and treatment , e.g. fear of stigma, discrimination or deportation can result in a reluctance to test • Migrants include those with work permits, student visas, undocumented, asylum seekers, refugees – issues can differ with onset of illness and need for treatment • While asylum seekers given medical cards those on student visas denied means-tested medical card and students, undocumented persons or person on short term visa could be asked to pay in full for medication and hospital stays

10. HIV and Deportations • Those who are HIV+ and asymptomatic continue to face deportation if refused asylum • Those on HIV treatment should not be deported to countries where treatment not available although some have been • If HIV+ can apply for leave to remain ‘on humanitarian grounds’ (Section 3(6)(b) Immigration Act 1999) – ‘each case decided on its merits’ – numbers granted leave to remain getting smaller as demand grows (in 1997 120; by 2000 only 18) and take a long time resulting in people living ‘in limbo’ • Until HIV treatment available, accessible and affordable globally should we have a duty to care regardless of residency status?

11. Study 1 - Some experiences and perspectives of ethnic minorities accessing HIV services (SJH Study) • Primary aim of SJH study was to inform practice of social work team in GUIDE and by extension the work of the multidisciplinary team • Social work team of 5 offer pre and post HIV test counselling and psycho-social support to approx. 1520 attending HIV clinic • Conscious of low take up of HIV support services by users from outside EU, the social work team set out to explore with service users what they knew of Irish support services and what supports they were currently using • To develop culturally appropriate services health service providers need to consult with and listen to views of service users

12. Study 2 - An exploration of the experiences and support needs of HIV+ African women living in Ireland (Q Study) • Primary aim of qualitative study by TCD MSW student was to inform social work practice by exploring • what support meant to five African women living with HIV, • where they were getting support and • what their unmet support needs were

13. Social Context • Health issues included HIV, hepatitis, TB, pregnancy, post traumatic stress • Pre-migration and departure – transit – resettlement • Isolation – language barriers – communication • Dispersal policy/direct provision – overcrowded housing • Prejudice – racism – lack of integration • Stigma of HIV in migrant communities • Poverty – not able to work in asylum process • Lack of child care/family support • Lived experience of HIV as terminal illness • Legal issues – may be faced with deportation – fear of implication of HIV dx on case for asylum

14. Support and support needs? • Coping skills determined by cognitive appraisal, coping strategies and coping resources, including good social support • Support defined as having a good social network as well as perceived and received social support • Support needs can include emotional, informational and concrete/practical needs • Good social support = = better mental and physical health = protects migrants from adaptation stress = leads to better coping abilities = reduces high risk sexual behaviour and = results in more disclosure of HIV status (Onwumere, Holtum & Hirst 2000; Asander et al 2004)

15. What we know from other studies • Structural, community and personal factors isolate and marginalise many migrants in European countries • Existing services in Ireland may not be meeting needs of migrant groups • Lack of trust of ‘host’ community among migrant groups • Marginalisation of migrants due to legal status shown to be more significant than stigmatization due to race • Those at ‘in transit’ stage of migration (i.e. asylum seekers living in direct provision or waiting for ‘leave to remain’) face more barriers accessing treatment and support and integrating into society (Cairde, 2004; Ugba, 2004; Flac, 2003; Edubio & Sabanadesan, 2001)

16. SJH Methodology – data collection • HIV+ service users from outside EU were asked to fill out questionnaire, with assistance if required. Purposive random sampling • Information sought included:- • demographic information; when where and how they found out their HIV dx ; what their knowledge of HIV was and is; whether their support needs were being met; experience of living in Ireland • Majority filled out in 2002 - data analysed 2003. • Service users from sub-Saharan Africa consulted in compiling questionnaire

17. Demographics • 57 respondents – majority women (n=42) • Majority 20-29 years (N=30), 30-39 years (N=22) • Length of time in Ireland varied from 4 months to 12 years • Majority were in asylum seeking process • Small number (N=6) had working visas • Significant number had been in Ireland for 1 year or less (N=22), 1-2 years (n=17), with only 12 over 2 years

18. Demographics • 17 countries represented • Southern Africa (N=29) (South Africa, Zimbabwe) • Central Africa (N=9) (e.g. Congo, Cameroon) • East Africa (N=8) (e.g. Uganda, Kenya). • West Africa (N=5) (Nigeria, Sierra Leone) • Asia (N=3) • 21 different ethnic groups “(it is) our culture and tradition” “(it is) just like being a Catholic” “it’s who I am” • 26 languages, from Amaharic to Zulu, identified as first language

19. Disclosure of HIV status • Majority had informed current partners of their HIV diagnosis (N=29). However:- • 6 people had not disclosed to present partner • 16 had not disclosed to ex-partners who post-dated diagnosis • 33 had not disclosed to ex-partners who pre-dated their diagnosis • Raises issues of importance of contact tracing/secondary prevention for health care workers • Fears around disclosure in Q study included fear of abandonment, fear of disclosure to others and fear of violence “he would kill me…he would blame me” • Rejection, abandonment, isolation, physical and verbal abuse as a result of disclosure have all been documented

20. HIV testing and counselling • Majority dx HIV+ in Ireland and had travelled to Ireland for reasons other than accessing HIV treatment • While good practice guidelines recommend PTC for people from countries of high prevalence of HIV • 20 participants had not received pre HIV test counselling prior to getting HIV positive result • In Q study 3 out of 4 dx in Ireland had not been counselled “when we just arrived there they say ‘we have to take blood’ you know, no counselling, nothing…they just take blood then we left. They didn’t give us any choice, we have to take”

21. Informational support • Study participants were largely informed abut HIV modes of transmission and safer sex • Just over half of respondents did not know much about HIV prior to diagnosis “The information brought hope” • In Q study, verbal communication was preferred “not everyone reads or understands leaflets. Its better to talk”

22. Informational Support • Majority (n=35) sought information on long term impact of treatment, vaccines, cures and prognosis - new concepts to many of them “what am I likely to experience with the progression of my treatment?” “I would like to know the long term prognosis” “Any hope of getting a cure? How long does the treatment last on a person’s system?” • Majority positive about treatment they received in HIV clinics, although fact drug treatment not accessible in country of origin may influence opinion

23. Healthcare • Health services were identified as good source of support to those with HIV in both studies • Majority found talking to MSW in HIV clinics beneficial in meeting informational, emotional & practical support needs • Good relationship between migrants and many health care providers despite lack of resources should form a good basis for developing working relationship/partnership • Main complaints in Q study were • Waiting time at clinics, particularly because of fear they would be seen; Doctors not interested in how they were feeling personally/emotionally; Medication being dispensed in public • Segregation of in-patients leading to breach confidentiality

24. Stigma “its like an insult to be HIV…if they knew you were HIV they just talk about it, all over (with ) everyone. They will tell everybody, that’s why now I’m just feeling lonely, I cannot share these things with anybody. Its very difficult” “I don’t have anybody…I’ve nobody to share about my health…I’m just alone you know”.

25. Stigma • While specialist HIV services generally received good feedback, some bad experiences were reported in Q study • one woman brought to hospital by neighbour who did not know her status was asked in front of her “how long have you known you have HIV?” • Lack of designated interpreters in health care also highlighted • one woman was asked to translate for another patient in maternity hospital • one man who was HIV+ was asked to bring his own translator who unfortunately told others about his dx

26. Emotional Support • Majority in SJH study (N=35) were getting support needed from partners and/or health care workers - 28 were in relationships with partners who were aware of their status • Of those not getting enough support (N=17) only 5 cited lack of information • Other reasons given included • STIGMA - “its because of me – I feel I have to be on my own because of what I have” • SOCIAL EXCLUSION – “because I’m an asylum seeker” • “(I) don’t think I’m ready yet” • “because I am alone and I worry if I was to get sick, where would my children go?”

27. Emotional Support • Emotional support widely valued – key elements identified were friendship, reciprocation of support, spirituality, resilience and inner strength • Importance of spirituality as source of emotional support has been well documented. In Q study faith in God was source of support to majority of the women “Only my faith in God will help me, this is the only hope I have” • However, many with HIV fear rejection by other church goes – faith based institutions may be an important site for HIV prevention and education messages • The only participant who received all her support from informal sources had been in Ireland for several years

28. Emotional SupportHIV Support Organisations • Participants were not aware of the range of HIV support organisations and only a small number were accessing support • (2 to OHH and 1 to Cairde) • Best known agency was Open Heart with 50% aware of it • 19 knew of Irish Refugee Council • 14 knew of Dublin AIDS Alliance • 8 knew of Cairde • 4 knew of Access Ireland

29. Emotional SupportPeer support • Majority in SJH study did not want peer supporter from their country or origin • Fears of loss of confidentiality • Feelings of shame • Perceived discriminatory attitudes/stigma in those communities • “Because they don’t keep secrets, if they know they will go gossiping” “They laugh behind yourback” “Because I don’t trust anybody” “Its not good, it’s the shame” • Majority would prefer peer support from another country, particularly Ireland, would welcome support groups, and would attend social events if organised • Similar findings in Q study - belief Irish better informed and greater respect for confidentiality

30. Peer support • Importance of giving and getting peer support was highlighted by women in Q study • “seeing other people like me, seeing how they live their lives” • “you have to be strong, you have to be going to each other for support. Another friend just diagnosed, I was giving her support like my other friend was giving me the support, now we’re like sisters”

31. Practical or concrete support • When asked what would help most cited practical things • Housing • The ability to work • Peer support • Concerns for future included • Medication not working • Being sent back to country of origin • In Q study practical support valued most included child care (informal) and financial assistance

32. Positives Access to HIV treatment Being able to keep secret from those at home More acceptable being HIV+ in Ireland Negatives Difficulties associated with asylum process (lack of privacy in hostels and B&B; learning new language) Racism Living away from family Feeling socially isolated Fear of dying in foreign country Weather Experience of living in Ireland

33. Recommendations 1 – Healthcare • Ongoing training/support for health care staff to provide culturally appropriate and gender specific service because:- • information given is not being received • existing support services are not being accessed • need to improve on how information in imparted including access to interpreting and translation services to provide information in different languages • Need for provision of pre and post HIV test counselling outside main specialist agencies

34. Recommendations 2 - Community • Need to tackle stigma and discrimination towards those with HIV and provide ongoing education to all communities to address fears around HIV • Need to work with and support minority ethnic groups to expand and strengthen social networks • Peer support • Churches as sources of HIV prevention and support • Increase awareness of benefits of accessing HIV testing and treatments - for both care and prevention of HIV

35. Recommendations 3 - Immigration Policy • Need to challenge immigration policies that actively work against integration • Living with uncertainty of legal status while waiting for decision can impact on health and secondary HIV prevention • Difficulties living in ‘direct provision’ highlighted - those testing HIV+ need privacy and access to good social support • Immigration policies which inhibit integration may have serious public health implications – there is a need for change at both structural and service provision level

36. Some advances • STAMP OUT STIGMA Campaign www.stampoutstigma.ie • Recent launch by Dublin AIDS Alliance of the Don’t Panic Guide to Sexual Health published in six languages, produced with help of focus groups www.dublinaidsalliance.com • New minority ethnic group rep on NASC care and management committee (representing ethnic minority membership Open Heart House) • St. James’s Hospital • Liaison Nurse in HIV clinic for minority ethnic groups • Cultural Diversity Officer for hospital – improvements in translation services; food; information; religious ritual; staff training • Despite fears around stigma/loss of confidentiality increase in peer support e.g. Open Heart House • Increase in staff awareness of cultural issues • Easier access to interpreters

37. Thanks • Thanks are due to participants in both these studies who, despite the stigma associated with their diagnosis, shared information about their situation openly and honestly in the belief that they would be contributing to an improvement in services • Resilience, inner strength, a sense of humour and positive attitude to life of those living with HIV evident in both studies • “Living a life of living, not the life of death. You are not dying….you are living” • “I’m living with HIV and that’s definitely what I’m doing. I’m living”