1. Hearing from People Living with HIV: Global lessons from the PLHIV Stigma Index
Laurel Sprague
The Global Network of People Living with HIV, North America (GNP+NA)
Wayne State University, Detroit, MI, USA

2. Why Ask People Living with HIV?
Human dignity
Reliability
Appropriate for high and low prevalence settings
Salience
Replicable
Identification of emerging trends
Empowerment
Dignity – information about people is gathered from them directly, not just “about” them. They/we have a voice.
Reliability – the idea that you are measuring what you intend to measure. Asking PLHIV about their concrete experiences with S&D within a specific period of time (did X happen in the last year?) is more likely to provide a reliable response than asking a community member (do PLHIV experience X in this community)
Salience and Replicability – solves the problem of general population questions working differently in high v low prevalence settings. Salient for PLHIV whether setting is high or low prevalence, therefore questions can be asked globally.
Identification of emerging trends – researchers can’t guess ahead of time all of the ways that S&D affect people in a particular area and S&D may shift over time as responses to the epidemic shift. Asking those at the center of the experience allows the identification of issues that would otherwise be invisible. Highlight the open-ended questions at the end and the follow up case studies on this point.
Empowerment – involving those targeted by S&D in the response to the problem. Not asking PLHIV to sit back while others discuss and solve.

3. Introducing the PLHIV Stigma Index
Joint initiative of:
International Community of Women Living with HIV (ICW)
International Planned Parenthood Federation (IPPF)
United Nations Joint Programme on HIV/AIDS (UNAIDS)
Global Network of People Living with HIV (GNP+)
Measures PLHIV experiences with stigma, discrimination, and human rights violations
Participative research based in GIPA principle and human rights
The founding partners were all four of the organisations. The current international partnership is the three organisations whose logos you see 3

4. The PLHIV Stigma Index…
translates individual and community experiences into language that decision-makers value and can use

5. Selection of Participants
Purposive sampling
Focus
Usually 3% or more of the number of people known to be living with HIV in a country or sub-country region
Inclusion of key populations
Goal
Data that is broadly indicative of the range of experiences of PLHIV in an area
Collecting random samples of PLHIV is not possible, therefore the PLHIV stigma index uses purposive sampling. That is, each country team decides where to focus their recruitment of participants in order to gain a sample that is broadly inclusive of the key affected populations in their country. This process can include recruitment from a mix of urban and rural locations, support groups, clinics, and other networks of key population groups.
The research teams attempt to include approximately 3% of the number of people known to be living with HIV in a country or sub-national region, such as a province or state. Within this sample, efforts are made to recruit members of key populations.

6. What does the index look like?
Factors of stigma and discrimination the questionnaire addresses:
Experience of stigma & discrimination from others
Access to work, education, and heath services
Internal stigma and fears
Rights, laws and policies
Effecting change
Testing & diagnosis
Disclosure & confidentiality
Treatment
Having children & reproductive and sexual health care
Self-assessment of effects of stigma & discrimination
In some countries there have been an additional modules that asks specifically about barriers to uptake of testing and treatment, other such modules or additional questions that are country or PLHIV populations specific can be appended with the agreement of the international partnership

7. Key Populations: Myanmar
The following slides provide some examples of what the PLHIV Stigma Index measures.
Demographics and key populations: “Hard to reach” populations CAN be reached, even in what seems to be the most difficult environments

8. Social Stigma in the UK In the last 12 months:
63% have been the subject of gossip
For 77% of these, this was in part or all because of HIV status
22% have been physically harassed
For 54% of these, this was in part or all because of HIV status
Some examples of what we can learn from the PLHIV Stigma Index

9. Family Exclusion in China
Excluded from family life/activities:
5% of sample
Response to HIV infection was supportive or very supportive
69% of spouses/partners
62% of other adult family members
80% of children
However, what percent disclosed to close family members?
Only 50 to 61%
22 July 2010 Combination HIV Prevention Evaluation

10. Discrimination by Health Care Workers
Denied health services because of HIV status in the last 12 months
Estonia and Philippines 8%
China
12%
Moldova
14%
Zambia
15%
Paraguay and UK
17%
Poland, Turkey, and Ukraine
20%
Social Desirability bias in health care worker survyes
Bangladesh – 6% said behavior of health professionals is the main barrier to testing
China – 26% said health care workers responded in disc or very discrim ways upon disclosure
1010 10

11. Anticipated Stigma
“I avoided going to a local clinic / hospital when I needed to” (last 12 months)
Rwanda and Turkey
8-10%
Estonia
11-17%
Bangladesh and Moldova
17-21%
Poland and Ukraine
18-26%
Paraguay
38-40%
Paraguay - (various personal statements indicated that this was because they didn't want to disclose their HIV status)

12. Issues with HIV Testing
Forced to Test
(Tested without consent or without knowledge)
Zambia
13%
Paraguay
24%
Poland
29%
Ukraine
31%
Estonia
34%
Philippines
44%
Moldova
52%
Turkey
66%
Can help to identify negative repercussions and unintended consequences, for example, in campaigns to increase HIV testing.
Social practices and social / legal requirements impact individual testing patterns.
High number testing only when showing up with symptoms indicates social practices that do not facilitate early testing among at risk populations (which may be almost everyone or may be specific communities).
Role of social/legal requirements such as employment testing, pre or antenatal testing, and opt-out testing which can lead to testing without consent or knowledge
Kenya – 23% referred du to suspected HIV related symptoms
In addition, 27% in DR and 35% in China received no counseling, 16% in myanmar, 31% Philippines, 32% UK
56% Philippines tested voluntarily
30% tested without their knowledge
77% in Paraguay tested voluntarily
15% tested under some level of coercion
9% tested w/o consent 12 12

13. Effecting Change in Kenya
In the last 12 months, have you confronted, challenged or educated someone who was stigmatizing you?
Yes No
75% (577)
25% (192)
26% (74)
74% (207)
Are you a member of a PLHIV network?
Compelling information from Kenya, indicating that it might be useful to follow up with some case studies to better understand this relationship and see if it can support calls for increased peer and psycho-social support.
p=0.000

14. Human Rights Violations in the Philippines
23% reported at least 1 human right abuse in the last 12 months
Of these, 17% tried to get legal redress
Main reasons for not attempting redress:
Intimidated or scared
Insufficient financial resources
No or little confidence of success
Information about how the legal system may need strengthening to make protective laws a reality for PLHIV
Example of structural level effects and how they link with individual/hehavioral and social level effects 14

15. an on-going human rights monitoring program in health facilities
Impact of the Index
Swaziland
Development of a National Framework to Address Stigma and Discrimination in Swaziland (currently in its final stages)
Implementation of an 'expert client' program in health facilities and communities
On-going human rights monitoring program in health facilities
Fiji
Strengthened counselling services
Ensured inclusion of clauses on stigma and discrimination and confidentiality in the HIV decree of 2010
Estonia
Scale up voluntary counselling and testing (VCT) programs that ensure confidentiality
Initiative against workplace discrimination, in collaboration with employers
Recent advocacy work resulting from Stigma Index results. All of these projects were led by the national network of PLHIV. Three examples:
Swaziland
development of a National Framework to Address Stigma and Discrimination in Swaziland (currently in its final stages)
the implementation of an 'expert client' program in health facilities and communities, arguing that PLHIV can provide quality counselling to other PLHIV to address issues of stigma and discrimination because they understand how their peers are experiencing being HIV-positive in Swaziland
an on-going human rights monitoring program in health facilities
When the Fiji Network for People Living with HIV and AIDS (FJN+) conducted the Index in 2010, a high percentage of respondents reported internal stigma, including guilt, blame and low self-esteem. Since 2010, FJN+ has successfully advocated to…
Estonia, results showed high levels of concern about discrimination in employment and lack of confidentiality when accessing HIV testing.
Scale up voluntary counselling and testing (VCT) programs that ensured confidentiality.
initiative against workplace discrimination, in which local and national corporations signed up to the International Labour Organization (ILO) Standard 200 for decent work conditions and also signed commitments to publicize that they welcomed HIV+ employees.