50+ Stigma The Story Goes On…The People Living with HIV Stigma Index

United Kingdom

Alastair Hudson ahudson@ippf.org

Overview: Research Design and Sample 4 ‘P’s: By and for People Living with HIV, Partnership, Process as important as

the Product of research Partnerships across the UK, and supported by IPPF, and international

partners (UNAIDS, GNP+ and ICW), supported to date by MAC AIDS Fund and Scottish Government, Herbert Smith LLP, Crusaid, MAD (The Make a Difference Trust) Film Education

Partnering with 45 domestic agencies across the UKIn Scotland: THT Glasgow, Aberdeen, Inverness, Waverley Care,

BodyPositive Tayside, Fife Men, Gay Mens Health and HIV Scotland

Overview: Research Design and Sample

The UK Quantitative sample 2009: 867 participants, over 45 UK sites (163 in Scotland)– Glasgow, Edinburgh, Aberdeen & Dundee– Diverse participants – 381 of men identified as gay or MSM (74%); – 253 identified as refugees/ asylum seekers (29% of

sample)– 172 identified as being 50+ (20% of sample)

The UK Qualitiative sample 2010: 61 participants, over 12 UK sites (3 focus groups, 14 participants in Scotland)

29%

29%3%5%

26%

1% 1% 3%3%

Group identification(8 NR, tick more than one)

Men who have sex with men

Gay or lesbian

Sex worker

Injecting drug user

Refugee or asylum seeker

Internally displaced person

Member of an indigenous group

Migrant worker

Prisoner

Background: Participant profile

Stigma and discrimination remain a big challenge in the UK

Amazing team of 35 community researchers—all people living with HIV - 21 members of UK the team are 50+… ‘and proud of it!’

“There is a need to educate about people’s rights. For one to identify that they have been discriminated they need to know their rights”

Abigail, May 2009 “It’s a big rollercoaster for me—it’s a journey I will never ever forget. I am

not alone. I have been hiding—for what?”Brenda, May 2009

“I’ve lived with HIV for longer than I have lived with anyone—including

my mother” Pauline, June 2009

People living with HIV are leading the response82% (50+ 84%) have supported other people living with

HIV

Support Services need to be improved• 88% of PLHIV in the UK know of services, 28% using

services• 91% gay and MSM know of services, 27% using services• 84% of refugees and asylum seekers know of services, 32%

using services • 87% of PLHIV 50+ know of services, 30% using services

Support“Home Helps made this comment in my presence… ‘I don’t think we should have

to go into people’s houses when they don’t know if they are HIV positive or not… that they should have that warning.’ And I didn’t make any comment because it wasn’t appropriate at the time. Once you are in their hands you could end up finding out that they were sort of horrified to have to deal with you.”

FG 1 Glasgow 2010

82% supporting other people living with HIV

Faith SettingsI know for a fact that my faith (catholic) would just disown

me, not just from my HIV. I went to confession; I thought I’ve just been diagnosed (HIV positive), maybe it it time to speak to the big one (God). I went in and spoke to the priest and he pulled the curtain back and everything on me. Gave me verbal. ‘Why are you living your life like this? It’s against the Bible… Where is your conscience?’ The Sunday I goes to mass… (the priest) gives my Dad communion, looks at me and just went like that (shakes his head)… and gives it to the person next to me. He wouldn’t give me communion. I still go to mass but I don’t go down to get communion. Why did he have to do that? Right past me. He shook his head so that everyone could see.”

FG2 Glasgow 2010

Health Care Settings21 % (50+19%) Reported disclosure by a health care

professional without consent.I know medical records aren’t keep completely

confidential. Because I received somebody else’s blood records with their name and address in my medical file… just six weeks ago. They (the hospital) said that wasn’t in the medical file. I says ‘well, I’ve got it at home. So they apologised. (FG1 Glasgow 2010)

93% (50+ 92%) reported being in ‘fair’ to ‘excellent’ health in the last 12 months.

Self – Internalised Stigma• 70% fear rejection from sexual intimacy (50+ 67%)• 47% have been sexually rejected at least once because of

their HIV status in last 12 months (50+ 59%)

65% (50+ 63%)low self-esteem

25% (50+ 26%)suicidal

41% (50+ 44%)felt ashamed

Rights90% agree that sexual health is a shared responsibility for

both partners (50+ 87%)Yet 26% (26%) thought criminalisation of HIV was a good

idea; 24% (26%) are not sure

For 53%, (52%) disclosure was identified as an empowering experience; but 34% (26%)said it is not, and 44% (45%)reported that criminalisation affects their decision re disclosure

“For one to identify that they have been discriminated against, they need to know their rights” London, May 09

Effecting Change44% (over 50+ 43%) reported having confronted or challenged

someone stigmatising themPriorities identified to address stigma include:

1. Raising the awareness and knowledge of the public about AIDS (26%) (28%)

2. Advocating for the rights of people living with HIV (23%) (22%)3. Providing emotional, physical and referral support (20%) (21%)

57% felt they have the power to influence change

“I need understanding—people to understand I am not going to die from this” South Yorkshire, June 09

Advocacy for change: Leadership from this community

Future qualitative and in-depth research

• Who is accessing services? And Why?

• Who is not accessing services, and why not?

• Are they fit for purpose?

Advocacy priorities• Criminalize Hate, not HIV• Ageing and HIV• Education & awareness

‘Positive? Attitudes to and Awareness of HIV’ a new multi media tool for teachers -launch World AIDS day 2011

• Migrants and Stigma Report

50+ Stigma The Story Goes On…

The People Living with HIV Stigma Index UK

www.stigmaindex.org ahudson@ippf.org