Learning from the Experiences of
Migrants accessing HIV services in
Ireland
Maeve Foreman Social
Work & Social Policy,
TCD
Immigration Initiative
Conference 2007
Introduction
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This talk draws on findings from two research projects
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Both are the subject of a recently published article
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one conducted by social work team in St. James’s Hospital
the other by Trinity College Masters in Social Work student
Learning from the Experiences of Ethnic Minorities Accessing
HIV Services in Ireland
Maeve Foreman; Heather Hawthorne
British 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
Some facts
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40 million people living with HIV in world today
25 million (63%) of those live in sub-Saharan Africa
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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
Background
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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
HIV care
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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
HIV and Deportations
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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
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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?
Study 1 - Some experiences and
perspectives of ethnic minorities
accessing HIV services (SJH Study)
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Primary aim of SJH study was to inform practice of social work
team in GUIDE and by extension the work of the multidisciplinary
team
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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
Study 2 - An exploration of the experiences
and support needs of HIV+ African women
living in Ireland (Q Study)
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Primary aim of qualitative study by TCD MSW
student was to inform social work practice by
exploring
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what support meant to five African women living with
HIV,
where they were getting support and
what their unmet support needs were
Social Context
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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
Support and support needs?
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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)
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)
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SJH Methodology – data collection
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HIV+ service users from outside EU were asked to fill
out questionnaire, with assistance if required.
Purposive random sampling
Information sought included:–
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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
Demographics
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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
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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
Demographics
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17 countries represented
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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
Disclosure of HIV status
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Majority had informed current partners of their HIV diagnosis
(N=29). However:
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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
HIV testing and counselling
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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
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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”
Informational support
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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”
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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?”
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Majority positive about treatment they received in HIV clinics,
although fact drug treatment not accessible in country of origin
may influence opinion
Healthcare
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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
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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
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”.
Stigma
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While specialist HIV services generally received good
feedback, some bad experiences were reported in Q
study
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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
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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
Emotional Support
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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
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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?”
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
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Emotional Support
HIV Support Organisations
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Participants were not aware of the range of HIV
support organisations and only a small number were
accessing support
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(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
Emotional Support
Peer support
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Majority in SJH study did not want peer supporter from their
country or origin
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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 your back” “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
Peer support
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Importance of giving and getting peer support
was highlighted by women in Q study
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“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”
Practical or concrete support
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When asked what would help most cited practical
things
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Concerns for future included
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Housing
The ability to work
Peer support
Medication not working
Being sent back to country of origin
In Q study practical support valued most included child
care (informal) and financial assistance
Experience of living in Ireland
Positives
Access to HIV treatment
Being able to keep secret from
those at home
More acceptable being HIV+ in
Ireland
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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
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Recommendations 1 – Healthcare
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Ongoing training/support for health care staff to provide
culturally appropriate and gender specific service
because:–
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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
Recommendations 2 - Community
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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
Recommendations 3
- Immigration Policy
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Need to challenge immigration policies that actively
work against integration
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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
Some advances
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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
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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
Thanks
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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
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“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”
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The experiences and perspectives of ethnic minorities