Alastair Hudson,

Rebecca Mbewe &

Valerie Delpech

alastairh@fpa.org.uk

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

#zerodiscrimination: UNAIDS

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

Good geographical coverage

* Comparisons to UK population using the National HIV Surveillance data (SOPHID) 2013 (N=80,467)

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

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

Demographics

Total: 1,576 participants

� Majority taking ART (93%)

� Mean 11 years since diagnosis (range

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

Gender and Sexuality in BAME

24%

29%

44%

2% 1%

Male Heterosexual

Male MSM

Female

Trans Male or

FemaleQueer, non-binary

or other

Results

• Feelings and experiences of living with HIV

• Types of stigma

• Disclosure in different settings

• Perceived and experienced stigma in the health care setting

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.

FEELINGS RELATED TO HIV

Positive and negative

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?

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?

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?

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

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

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%

DISCLOSURE

Control, support and pressure

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’)

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

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,

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%

Health Care

(N=1528)

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%

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

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

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

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

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

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?

Thank you

Thank you to all our

participants who took

part in the study!