Alastair Hudson, Rebecca Mbewe& Valerie Delpech … · Methodology 2009 Survey • 867 participants...
Transcript of Alastair Hudson, Rebecca Mbewe& Valerie Delpech … · Methodology 2009 Survey • 867 participants...
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Alastair Hudson,
Rebecca Mbewe &
Valerie Delpech
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The People Living with HIV
Stigma Index
StigmaIndexUK – 2015A Hudson 1,4, R. Mbew ,J. Jefferies 2 , I Lut 1,4, S Okala 1, L Benton 1, Z Jamal 1,4, SC.F.
Ferraro 1,2 , P. Kirwan 2 , D. Asboe 3 , C. Kunda 4 , e 4,5 , J. Morton 4,6 , M. Nelson 7, I.
Reeves 8 , M. Ross 4,9 , W. Sseruma 4,10 , G. Valiotis 4,11 , A. Wooton 4,9, V. Delpech 2
1Family Planning Association, London, United Kingdom, 2Public Health England, London, United
Kingdom, 3British HIV Association, London, United Kingdom, 4StigmaIndexUK2015 Advisory Group,
London, United Kingdom, 5Positively UK, London, United Kingdom, 6Terrence Higgins Trust, London,
United Kingdom, 7Chelsea & Westminster Hospital, London, United Kingdom, 8Homerton University
Hospital NHS Foundation Trust, London, United Kingdom, 9Clinic Q, London, United Kingdom, 10NAZ,
London, United Kingdom, 11HIV Scotland, Edinburgh, United Kingdom
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#zerodiscrimination: UNAIDS
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Methodology
2009 Survey• 867 participants
• Recruited by UK community & policy
organisations
• Peer-led interviews
2015 Stigma Index UK (Jan – April 2015)
• 1,576 individuals
• Recruited by over 100 cross sector community organisations and 46 NHS clinics
• Self-completed survey online (SNAP)
• Ethical approval (NHS)
• Prize draw to win an iPad as incentive
• 24/7 hotline -No adverse events
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Good geographical coverage
* Comparisons to UK population using the National HIV Surveillance data (SOPHID) 2013 (N=80,467)
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Measures
Experiences of stigma in
different settings:• Sexual relationships
• Family & Friends
• Work place
• Health and social care services
• Educational settings
• Religious activities
• Social services
• Police, prison & detention
services
Different experiences of stigma:
• Internalised (fear, worry)
• Anticipated (avoiding situations)
• Enacted (treated differently)*
• Disclosure control & support
• Pressure to disclose
• Age
• Gender
• Ethnicity
• Sexuality
• Sex work
• Use of drugs
• Prisoner status
• Migrant status
• Disability
Participant information:
Survey tools:• Resilience score
• PHQ2 depression screening tool
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Employment
Employment statusAll participants (1,576)
Employed full time 49%
Employed part-time 13%
Casual work 4%
Unemployed 17%
Volunteering 12%
Sick / disabled 17%
Looking after home 3%
Retired 7%
Student 4%
• Half of participants
were in full-time
employment
• Most are working in
the private sector
(47%), compared to
public (33%) or
voluntary (20%)
sectors
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Demographics
Total: 1,576 participants
� Majority taking ART (93%)
� Mean 11 years since diagnosis (range
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Definition of BAME
‘BAME’ by ethnicity and region of birth Freq. %
Any other White - non UK 113 19
Mixed White and Black Caribbean 12 2
Mixed White and Black African 15 3
Mixed White and Asian 18 3
Black Caribbean /Black British Caribbean 36 6
Black African UK/EU citizen 12 2
Uganda - Black Eastern African 41 7
Other Black Eastern African 60 10
Black Western Africa 40 7
Black Northern or Central Africa 21 4
Zimbabwe - Black Southern African 96 16
Black Southern Africa 19 3
Any other /unknown Black background 16 3
Asian 37 6
Arab 3 1
Other ethnic backgrounds 44 8
Total 583 100
Ethnic Group Freq. %
White British/Irish 967 61
Any other White - UK citizen 22 1
BAME 583 37
Missing 4
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Gender and Sexuality in BAME
24%
29%
44%
2% 1%
Male Heterosexual
Male MSM
Female
Trans Male or
FemaleQueer, non-binary
or other
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Results
• Feelings and experiences of living with HIV
• Types of stigma
• Disclosure in different settings
• Perceived and experienced stigma in the health care setting
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Stigma and discrimination
• Variations in how HIV-related stigma is defined in the literature• Stigma is a process of devaluation – an attitude or value that can be
expressed, perceived and/or anticipated in different ways
• Discrimination is an action – sometimes also referred to as enacted stigma
• Stigma and discrimination are related but distinct concerns• Multi-layered and can relate to more than one aspect (such as HIV status,
sexuality, gender, or race etc)
• Measurement and efforts to address stigma and discrimination need to be different.
• Growing evidence of the impact of HIV related stigma and discrimination on the health and well-being of people
• Experiences of stigma and discrimination are difficult to measure and both are under-reported.
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FEELINGS RELATED TO HIV
Positive and negative
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Living with HIV in 2015
N=1576 YES
In control of my health 62%
Positive about life 65%
Positive about the future 63%
As good as anyone else 59%
Q. In the last 12 months, have you experienced any of
the following feelings in relation to your HIV status?
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Self-image
N= 1576 YES
Felt ashamed 49%
Felt guilty 46%
Blamed myself 48%
Had low self esteem 49%
Blamed others 23%
Felt suicidal 18%
Q. In the last 12 months, have you experienced any of
the following feelings in relation to your HIV status?
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Negative self-image
0%
10%
20%
30%
40%
50%
60%
70%
80%
90%
100%
In control of
health
Positive about
future
Positive about life Feel as good as
anyone else
No
Yes
Q. In the last 12 months, have you experienced any of
the following feelings in relation to your HIV status?
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Negative self-image and depression
• 45% had ever been diagnosed as depressed
– 62% of participants that had ever been depressed had a
negative self image score
• 28% scored high (>2) in the PHQ2 depression
screening tool
– 78% of those screened for depression had a negative self
image score
• 18% reported suicidal ideation
– 87% of participants reporting suicidal ideation had a
negative self image score
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Negative self-image and
seeking care
General Practice
• 15% of all participants reported avoiding their GP
• 74% of participants avoiding their GP had a negative
self image score
Dental practices
• 15% of all participants reported avoiding dental
practices
• 66% of participants avoiding dental practices had a
negative self image score
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In the last 12 months
have sought help from…
Overall Negative self-image
NGO 35% 39%
Peer Group 13% 14%
NHS 11% 12%
Activists 6% 6%
Faith settings 4% 4%
Community 2% 2%
Internet 19% 23%
None 46% 43%
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DISCLOSURE
Control, support and pressure
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Disclosure
• Disclosure is a complex and multifaceted
process of making a voluntary or involuntary
decision about who to inform about one’s HIV
status
• It is often a gradual process of disclosing to an
increasing number of others in one’s networks
• It’s meaning has significantly changed over the
past decades – (‘being undetectable’)
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Who is aware of your HIV?
Participants (N)
Sexual Partner (N=1189) 83%
Family (N=1535) 70%
Friends (N=1528) 79%
Faith community (N=616) 22%
Workplace (N=1444) 48%
Overall about half of participants felt empowered
when sharing their status with others
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I felt pressure to disclose my HIV
status from…..
A sexual Partner (N=986) 11%
A family member (N=1063) 16%
Close friends (N=1191) 9%
Leaders or members of your
religious community (N=146)
9%
Employer (N=637) 12%
However…. In 2015,
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Experiences of HIV related stigma
and discrimination in 2015
Worried about
Being rejected by a sexual partner? 49%
Being treated differently by your employers or co-workers? 30%
The security of your job? 25%
Avoided
Taking my relationship to the next step 52%
Going to one or more family gatherings/activities 21%
Attending social gatherings arranged by friends 23%
Decided not to apply for, or turned down, employment or a promotion 14%
Discrimination
Physically assaulted 4%
Rejected by a sexual partner? 28%
Excluded from one or more family gatherings/activities? 9%
I was denied insurance products (e.g Health, dental, life, job
protection) because of my HIV status
11%
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Health Care
(N=1528)
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91% said their GP Practice
were aware of their HIV
status.
Primary Care
GP not
aware
9%Supported
54%
Not supported
46%
GP aware
91%
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56% said their Dental Practice
was aware of their HIV status.
HIV Disclosure in Primary Care
Dentist
not
aware
44%
Supported
57%
Not
supported
43%
Dentist
aware
56%
91% said their GP Practice
were aware of their HIV status.
GP not
aware
9%Supported
54%
Not
supported
46%
GP
aware
91%
Time since diagnosis had no impact on Control & Support
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Had negative comments from a healthcare worker about your HIV status or PLHIV ? 14%
Felt there was excess attention to using barrier protection (i.e. gloves, masks)? 22%
Been given the last appointment of the day not by choice? 13%
Stigma and discrimination in health care
settings in 2015
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Relationship between stigma and feelings of control of
disclosure: GP practice
40.00%
39.00%
22.00%
0% 20% 40% 60% 80% 100%
Worried or feared discrimination
20.18%
18.24%
6.70%
0% 20% 40% 60% 80% 100%
Avoided GP
8.31%
7.77%
3.28%
0% 20% 40% 60% 80% 100%
Felt refused or delayed treatment
19.88%
16.22%
7.13%
0% 20% 40% 60% 80% 100%
Been treated differently
N=424 N=176
N=174N=78
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Relationship between stigma and feelings of
control of disclosure: Dental practice
47.5
51.5
30.33
0 20 40 60 80 100
Fear of Discrimination
20.83
14.37
10.85
0 20 40 60 80 100
Avoided Dentist
10
7.78
5.88
0 20 40 60 80 100
Felt refused or delayed treatment
26.67
22.75
13.97
0 20 40 60 80 100
Treated differently
N=322 N=114
N=153N=60
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Conclusions• The UK has well-established anti-discrimination laws and policies, and
excellent health care
• The majority of people living with HIV in the UK feel positive about their
lives and health
However,
– Half of people living with HIV has a negative self image in relation to their HIV
and almost one in five felt suicidal
– Better identification and support for people with negative self image is required
– A significant number of people continue to feel or experience stigma in a range
of settings including health care settings
– These feelings can be reduced when people feel in control of the decision to
disclose their HIV status
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Next steps
• Further analyses including:
– Key-populations, women and girls, BAME communities
– Resilience and Depression
– Production of report cards for dissemination
– Qualitative work to explore certain aspects of stigma in more detail
• Community consultation and dissemination of results
• Engage with relevant key stakeholders to update and review
policies – including disclosure in the health care and provision
of insurance products
• What does disclosure really mean in 2015?
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Thank you
Thank you to all our
participants who took
part in the study!