MODELS for dialogue
Between
PLHIV networks &
Religious Leaders and
Faith Communities
Christoforos Mallouris
29 November 2011, Toronto
Outline
• Background
• Evidence informed response - PLHIV evidence, some
examples
• Response from faith communities and religious leaders
• Determining the scope of dialogue to inform model
development
• Conclusions
• Group work
Models for Dialogue
• Religious Leaders Summit, Netherlands 2010
• Religious Leaders’ Commitment for Action
• Immense response
• In parallel evidence from PLHIV Stigma Index and other
methodologies pointing towards need for action and
dialogue
• Dialogue does happen, but can be supported to be more
systematic, systemic, and quality assured
Evidence base
PLHIV Stigma Index
• Representative survey on stigma and discrimination faced by
PLHIV (external and internal)
• Participatory research by and for PLHIV, led by national PLHIV
networks
• Process is as important as the evidence gathered
• Evidence forms the base for development of action
• PLHIV Stigma Index results for monitoring progress
• International coordination (GNP+, ICW, UNAIDS) and
informing global and regional level
PLHIV Stigma Index
• Over 30 countries in process of roll-out, finalisation, reporting or
post-reporting action
• Draft reports from Ukraine, Ethiopia, Kenya, Nigeria, Zambia,
Myanmar (2010 – 2011)
• What is relevant to model for dialogue?
• Stigma in religious settings / places of worship
• Levels of disclosure to religious leaders and relevance of faith
communities to PLHIV
• General experiences within the community and possibilities for
action for faith communities
• Internal stigma impacting on access to one’s faith, spiritual support
and psychosocial status and access to services
PLHIV Stigma Index
Levels of stigma experienced in religious activities/places of worship
Exclusion from religious
activities/place of worship
Kenya
Nigeria
Zambia
Ethiopia
Ukraine
Never
%
79.1
Once
%
5.2
A few times
%
9.2
Often
%
6.5
65.9
9.5
17.4
7.2
83.3
7.0
6.7
3.0
85.7
3.2
7.3
3.7
96
1
2
1
Compared to levels of disclosure to religious leaders
Disclosure to religious leaders
I told
them
Someone else
told them, with
my consent
Kenya
Nigeria
Zambia
Ukraine
23.4 %
19.4%
27.9%
18%
3.5 %
1.6%
8.6%
1%
Someone else
told them,
without my
consent
6.6 %
4.7%
8.6%
1%
They don’t
know my HIV
status
Not
applicable
34.2 %
35.7%
34.1%
15%
25.8 %
38.7%
20.8%
66%
Evidence (contd.)
30
26.1
25
20
15
16.9
14.2
13.4
10.8
10
5
0
Orthodox
C atholic
P rotes tant
Mus lim
Traditional
and Others
Figure 3.3: Percentage of respondents that reported exclusion from
religious activities or places of worship in the last 12 months by the
religious group they belong to, 2010
(Ethiopia PLHIV Stigma Index Report)
Key populations –
where is the data?
Percent distribution of respondents who had been excluded from religious
activities in the last 12 months (Zambia)
Never
Once
A few times
Often
Total
Background Characteristic
Key population
n (%)
n (%)
n (%)
n(%)
N
Men who have sex with men
5 (100)
0 (0)
0 (0)
0 (0)
5
Gay or Lesbian
Transgender
2 (100)
5 (100)
0 (0)
0 (0)
0 (0)
0 (0)
0 (0)
0 (0)
2
5
Sex worker
Injecting drug user
42 (75)
3 (60)
3 (5.4)
0 (0)
5 (8.1)
2 (40)
6 (10.7)
0 (0)
56
5
Internally displaced person
11 (52.4)
4 (19)
2 (9.5)
4 (19)
21
Refugee or asylum seeker
2 (100)
0 (0)
0 (0)
0 (0)
2
Member of an indigenous 5 (83.3)
group
0 (0)
1 (16.7)
0 (0)
6
Migrant worker
23 (74.2)
1 (3.2)
6 (19.4)
1 (3.2)
31
Prisoner
94 (76.4)
11 (8.9)
15 (12.2)
3 (2.4)
123
None of these categories
500 (87.1)
35 (6.1)
27 (4.7)
12 (2.1)
574
Total
688 (83.3)
58 (7.0)
55 (6.7)
25 (3.0)
826
Qualitative DATA
• “A religious organization revealed the result of my
HIV test. The leader of this organization forbade
members to visit my home”. Sagaing Division
• “I try to console myself with religion”. Yangon
Division
(Myanmar PLHIV Stigma Index Report)
Beyond Faith…
Categories
Never
%
Once
%
Often
%
About 30% physically
assaulted!
10.8
5.2
A few
times
%
17.9
9.2
Exclusion from social gatherings
Exclusion
from
religious
activities/place of worship
Exclusion from family activities
Aware of being gossiped about
Verbally insulted, harassed and/or
threatened
Physically harassed
60.4
79.1
10.9
6.5
Over 50% verbally
assaulted!
69.7
21.3
43.7
7.3
5.2
14.2
15.1
35.5
29.4
7.9
38.0
12.7
About 40% excluded
from social
gatherings!
61.9
14.1
17.9
6.1
Physically assaulted
69.2
14.1
12.0
4.7
Table 2: General stigma and discrimination in the previous 12 months (Kenya,
PLHIV Stigma Index Report)
Internal stigma
Gender
Experience in the last 12 months
Male
Female
I feel ashamed
45.1
46.1
I feel guilty
47.1
I blame myself
Place of Residence
Sig.
Sig
Number
of Cases
(N)
Rural
Urban
0.312
52.3
43.0
0.000
3286
40.8
0.000
44.8
42.0
0.072
3275
56.4
49.4
0.000
53.3
51.0
0.122
3283
I blame others
20.1
32.6
0.000
31.5
27.5
0.012
3278
I have low self-esteem
49.6
53.7
0.017
54.8
51.4
0.043
3279
I feel I should be punished
26.7
31.3
0.004
30.4
29.6
0.337
3294
I feel suicidal
16.6
21.5
0.002
19.9
20.0
0.502
2610
Table 3.10: Percentage distribution of perception and fears respondents had
had for themselves as a result of their HIV-positive status by gender and place
of residence, 2010 (Ethiopia)
Internal stigma
I don't know/not sure reason,
14.5
Looks HIV symptomatic,
15.3
People disapprove of my
lifestyle, 11.3
Religious Beliefs/moral
judgements, 18
People think HIV is
shameful, 36.4
People are afraid of Infection,
33.1
Percernt
Figure 6 indicates what respondents think
lies behind the HIV-related stigma they
experienced. (Kenya)
Pople don't understand HIV
transmission, 40.9
Key populations
Myanmar
Access to health
36
Migrants
SWs
30
Prisoners
30
28
LGBT
27
IDUs
Have never belonged to
risk groups
19
Fig. 2.5. Integral indicator: People who faced restrictions during the last 12 months
in access to social and health care services for reasons that included HIV status (by
social groups, %) (Ukraine)
Sexual and Reproductive Health
and Rights needs
Myanmar
Impact on employment
Myanmar
The role of FBOS In
combating Stigma?
Type of Organizations / groups known by
the PLHIV
Male
Female
Total
People living with HIV support group
27.0
28.5
28.7
Network of people living with HIV
67.2
72.8
72.7
Local non-governmental organization
5.2
3.6
4.3
Faith-based organization
2.5
4.6
4.0
A legal practice
17.9
17.8
18.3
A human rights organization
5.0
6.0
5.8
National non-governmental organization
0.7
0.6
0.7
National AIDS council or committee
1.3
0.6
0.9
International non-governmental organization
0.7
0.2
0.4
UN organization
0.1
0.1
0.1
Other
3.5
4.0
3.9
Number of Cases
677
1273
1900
Table 4.11: Types of organisations rendering support on stigma mentioned by
respondents, 2010 (Respondents'’ knowledge; Ethiopia)
Other PLHIV evidence
• Interviews with PLHIV regarding their needs or
experiences with faith communities and religious
leaders (stigma reduction? support for food security
and employment opportunities?)
• Reports of PLHIV not accessing ART based on advice
from religious leaders (anecdotal? Unknown how
serious this issue is?)
• Other?.... Very little evidence on support needed and
given from the PLHIV perspective
Response from faith
community
• Spiritual support
• Orphans and vulnerable children and family support
• Addressing stigma and discrimination in the community
• Service providers (treatment, care and support)
• Gender based violence (some)
• PMTCT (some)
• Very little information on
•
•
•
•
•
The most affected populations
Prevention
Harm reduction
SRHR
Multi-faith responses
Some Conclusions
IS there scope for MORE?
• Current programmes tend to focus on ‘general population’ of PLHIV
• Similar (consistent) policies on some issues and variant (inconsistent) practice
on other issues
• Documented and anecdotal evidence variance
• The role of faith communities to address issues within faith community
AND/OR the role of faith communities to address needs of PLHIV beyond
faith
Possibilities for Dialogue and Collaboration
• Concentrate on what is currently being done well and agreement on how to
do proeceed where there is disagreement (may not correspond to evidencebased PLHIV priorities; but low resources and time investments)
• Expand to more ‘difficult’ thematic areas (corresponding to evidence-based
PLHIV priorities; but higher ‘internal’ policy and practice reflection and
change with long-term commitment of time and resouces)
Determining scope of
dialogue
• Survey
•
•
•
What do PLHIV need as priorities? And what are the perceived priorities of PLHIV by
religious leaders and faith leaders? What are experiences of religious leaders living with
HIV? What are the experiences of religious leaders in responding to needs of PLHIV?
Most importantly… what do PLHIV expect from religious leaders and faith communities?
And likewise, what do faith communities and religious leaders expect from PLHIV?
Coming to a common ground
• Interviews (PLHIV networks, religious leaders, faith based organisations)
• Model development (draft, based on above)
• Testing at country level (2 countries)
• Revision following testing
• Dissemination of findings and model
• Evaluation and long-term monitoring (?)
Group Work
• Using the PLHIV Stigma Index evidence to spark discussion, not
go into details on the methodology
• What are opportunities for dialogue and areas of action?
• What are the challenges?
• What are success factors and ways to overcome challenges?
• What is possible, what is not?
• Concentrate on what is possible now? Or move towards making
what is now impossible to possible in the long-term?
• What are the expectations from each stakeholder?