15861.pdf
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- extracted text
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2009
Baseline Report on
Stigma &
Discrimination
Among Religious Leaders, NGO Heads &
Friendly Advisors
A project implemented by INSA-lndia and supported by KSAPS / NACO
?-
Catalyst Management Services,
Catalyst Group
#19, 1st Main, 1st Cross, Aswathnagar, R.M.V 2nd Stage, Bangalore560 094. Phone: +91 -080 23517241, Fax:
+91-080-23417714
CONTENTS
1
ACKNOWLEDGEMENT
4
2
ABBREVIATIONS
5
3
BACKGROUND
6
4
OBJECTIVES AND METHODOLOGY
7
5
PROFILE OF RESPONDENTS
II
6
AWARENESS STIGMA & DISCRIMINATION, HIV/AIDS,
13
7
INTERNAL STIGMA - FA
18
8
VALUES - DELINK SIN, SEX & HIV
20
9
STIGMA - WILLINGNESS & ACTIONS
24
10
S&D ASSESSMENT - SELF & ORGANIZATION
25
11
KEY SUGGESTIONS - RH
27
12
SUMMARY
28
■7'C
1
Acknowledgement
At the outset we want to thank INSA-lndia for providing us an opportunity to conduct Baseline
study on Stigma & Discrimination for Sustainable Transformation through Advocacy, Networking
and Dialogue STAND supported through (KSAPS) Karnataka State AIDS Prevention Society
& funded by (NACO)National AIDS Control Organization.
We are grateful for active support we received in various ways from people too numerous to be
named individually. They include Heads of Non-Governmental Organizations; Religious
Institutions & Person’s living with HIV who spent quality time responding to our study.
We thank the top management of INSA-lndia and team members of Project STAND who
supported us with critical inputs and perspective that helped us refine the study approach.
2
Abbreviations
AIDS
- Acquired Immuno Deficiency Syndrome
ART
- Anti Retroviral Treatment
CBO
- Community Based Organizations
CMS
- Catalyst Management Service
FA
- Friendly Advisors
FGD
- Focus Group Discussion
HIV
- Human Immunodeficiency Virus
HRG
- High Risk Groups
ICTC
-Integrated Counseling and Testing Center
INSA- India - International Services Association
MSM -TG
- Men have Sex with Men - Transgender
NGO
- Non Governmental Organizations
NH
- NGO Heads
PLHA
- Person Living with HIV and AIDS
PLHA
- Person living with HIV
RH
- Religious Heads
S&D
- Stigma and Discrimination
SSH
- Secondary Stake Holders
STI
- Sexually Transmitting Infections
sw
wsw
- Sex Worker
- Women in Sex Work
5
3
Background
Stigma and discrimination are major obstacles for effective responses to HIV and AIDS and
have been identified as key barriers to the achievement of universal access to HIV prevention,
treatment care and support. Stigma and discrimination make people less likely to participate in
prevention activities, less likely to get tested for HIV, and less likely to enroll for treatment even
where it exists. People may be fearful of disclosing their status, and may postpone seeking
care, and they may suffer violence, particularly gender-based violence, related to their HIV
status. Stigma builds on existing social inequalities so that marginalised groups who are at risk
of HIV infection, are doubly stigmatised. Women face more stigma and discrimination than men
in many settings.
INSA-lndia was established in 1982 to create health and development leadership & was first
organisation in India to launch HIV prevention in community health settings {1988} and
educational institutions/religious heads{1991}.
INSA-lndia’s sustained networking initiatives coupled with follow-up through the Ford
Foundation endowment{2004} enabled the development of Friendly Advisors and community
based programs, internal mainstreaming and developing HIV workplace policies. Since 2005,
INSA-lndia facilitated 11 district-level positive networks to implement advocacy, prioritized plans
& building their trust {viz. INP+ , INERALA , KNP+ district level networks}. The 4-week STAR
advocacy leadership program enabled empowerment of marginalized groups/ communities to
resist S&D. Presently INSA-lndia is working towards getting SHGs /MFIs/ NGOs/ Religious
Groups to mainstream HIV- a powerful process envisaged to tackle the other forms of inequality
and exclusion that dis-empowers those most vulnerable.
Now INSA-lndia is implementing a STAND (Sustainable Transformation through Advocacy,
Networking and Dialogue) project in Karnataka. The main objective of the project is to develop
the STAND networks in Karnataka so that:
1. Thirty religious heads and their congregations begin networking dialogue with positive
networks and complete the outcomes listed below.
2. Twenty-five people living with HIV infection become “Friendly Advisors’ facilitating the CLife curriculum in youth settings in Karnataka.
3. Twenty-five NGOs implement the C-Life curriculum in 30 youth settings in coordination
with the Positive Networks.
4.
Religious and educational authorities, positive networks and NGOs as members of the
STAND network meet quarterly to discuss experiences, dialogue on strengthening the
C-Life program for addressing stigma.
As part of the project initiation, INSA-lndia sought to conduct baseline survey to assess the
extent of stigma & discrimination among the intended target audience and associated
environment. This report details out the findings of the baseline that was conducted by Catalyst
Group for INSA-lndia.
6
4
Objectives and methodology
4.1 Objectives and scope:
The key objective of the baseline study was designed to understand and assess the stigma and
discrimination among target audience as outlined in the proposal - heads of religious
institutions, religious congregation, implementing NGOs, persons living with HIV & youth groups
in community settings.
The study addressed the following 6 key areas and indicators, keeping the Project activities as
background:
i Awareness of stigma
1. What is stigma? How does stigma manifest? Its implication on the overall quality of
life of individuals?
2. What is the difference between stigma & discrimination?
3. Awareness about existing programmes on S&D and their willingness to participate?
4- Fear of transmission and disease
4. How many stake-holder know the correct mode of HIV transmission?
5. What are the common myths and misconceptions associated with HIV transmission?
6. What are the factors?
7. What is the behavioural disability caused by fear of transmission?
4- Values - Delink sex-sin and HIV (i.e. associations with shame, blame and
judgment)
8. How many associate HIV, sex with sin and morality?
9. What is stakeholders perspective about PLHA and those who are assumed to be
spreading HIV?
10. What are the factors that promotes and S&D at the institutional level?
11. What are the current programmes of institutions for reducing S&D?
4- People living with HIV infection perceived as spreaders of infection { Associations
of them spreading infection instead of being agents of prevention}
12. What is the level of awareness about HIV, allied services, other advocacy
programmes & rights of PLHAs?
13. What is the level of willingness to be part of S&D reduction programme?
14. What is the level of confidence about their knowledge, skills, attitude and practices?
4- Enacted stigma or discrimination (i.e. actions that are typically associated with
discrimination)
15. What is the extent of S&D faced? By whom, when, where & how?
16. How has it impacted on their quality of life?
7
4- Internalized stigma with People Living with HIV?
17. What is the extent of internal stigma? Factors?
18. How has it impacted their quality of life?
19. What are the supports net Phi’s currently have and trust?
Limitations/Challenges:
These were few of the challenges the investigators put forward prior to the studies and most of
which were experienced during the actual data collection and analysis.
4- The study could face non-responses from the respondents especially with religious
heads on issues surrounding sex and sexuality. Given the small samples, this may have
some effect on the outputs of the study. However, the non-response can also be
constructed as existence of S&D and unwillingness to discuss sex and sexuality on
religious platforms.
i The study is designed to systematically collect the data given the kind of resources
available. Hence the sample size and other approaches are planned to suit the same.
The study will have its limitation to take comparable or controlled samples to compare
the changes between operational and controlled samples.
4.2
The Guiding Principles:
The following principles guided the team during designing, data collection & analysis.
❖ Evidence for planning & monitoring: Catalyst Management Services will approach the
study to aid INSA-lndia in planning the intervention, to evolve strategies and to develop
monitoring to assess the outcomes. Primarily the study will focus on the knowledge,
skills, attitude and practices of the stake-holder in relation to stigma and discrimination.
The study will use approaches that are simple, quick and robust enough to assess the
prevailing situation and can be comparable across periods. The approach will be simple
and will be devoid of complex statistical approach.
❖ Qualitative vs. Quantitative Assessments: A combination of both quantitative and
qualitative assessments will be used. The numbers will provide, how many, where and
what while the qualitative will provide the how and why part of the analysis.
8
4.3 Approach:
The study used both quantitative and qualitative data; what is known as mixed method and
consisted of:
1. Key informant interviews
a. Religious Heads
b. NGOs who will implement the said project
c. PLHAs that will be selected as “Friendly Advisors".
2. FGDs with Staff of NGOs & Positive Network
3. Analysis and synthesis of findings, with participation of staff
4.4 Sampling:
The study used ‘Focussed Sampling’ method in which samples were identified based on their
willingness to be part of the study and Project Sanchaya.
The section below details out the number of samples covered.
Respondents
Method
Planned
Actual
Numbers
Covered
80
29
21
26
76
1
0
1
2
0
Balance
Quantitative______
Religious Heads
Key Informant Interview
30
NGO Heads_______
Person Living with HIV
Key Informant Interview
25
Self Assessment
25
Total
4
4
J.
-4
Qualitative________
Second level NGO Staff
Focused Group Discussion
1
Members of Positive Network
Focused Group Discussion
2
Total
2
0
9
4.5 Processes and steps:
The study observed following processes and steps:
Step 1: Preliminary discussion with INSA-lndia:
Step 2: Design of Research Instruments by CMS using similar experiences will design
the field tools, pre test in small sample.
Step 3: Piloting of research instruments : through Interviews and In-depth discussions;
review of results and modification of tools. On completion of at least two in-depth
interviews in each category of respondents, the team will reflect on the effectiveness of
the tool. If need be the tool will be modified accordingly.
Step 4: In-depth field survey in all the selected areas
Step 5: Data entry and compilation
Step 6: Analysis and Reporting of qualitative and quantitative data and draft report
preparation;
Step 7: Analysis workshop with INSA-lndia team: Workshop for sharing prelim findings,
strategy analysis, and leading to finalisation of the study finding; (the cost of the
workshop is not budgeted in the said proposal. INSA-lndia may have to bear the cost of
organizing such workshop)
Step 8: Finalisation of report incorporating the feedback during the workshop
IO
5
Profile of Respondents
5.1 Profile of Respondents - Religious Head
respondents are Christians,
followed by Hindu 38%; 10% are
Muslim; Buddhist & Sikhs constitute 7%
and 3% respectively.
76%
52%
41%
’ 30%
24% 21%
| 20%
j 10%
■
41%
Profile of F^ligious Heads
| 90%
i 30%
: 70%
' 60%
50%
; 40%
24%
17„u
17%
11 _ I
I s
0%
10%
.
7%
o
o
o
£
O
I n1 f II
T
ft
i
H A.
I I i I
z
c
2
o
Majority of respondents are male
religious leaders; with only females
from Christian denomination. More than
75% of respondents are from Southern
*1
Religion
Sex
Age
3%
I sw
;
More than 50% fall between the age
group 31-40 years.
|
Region
Karnataka
5.2 Profile of Respondents - NGO Heads/Project Leaders
Profile of NGO Heads
Majority of respondents are Hindu
(67%) followed by Christians (29%) &
Muslims (5%)
108%
86%
90%
67%
72%
More or less respondents are equally
! from south (48%) & north (52%)
24% 24% j Karnataka
54%
33%
36% -29%
33%
18%
J i
0%
£
£
?
iS
f
?
*
I = I ? I
Age
Sex
mn
■
14%
Religion
Region
Illi
J
Around 50% of respondents fall under
6 i 40 yrs of age
I ?c
0
5
■
o
Experience
Majority of respondents (85%) are male
NGO Heads
Around 48% of respondents have more than 10 years of experience; while 1/3rd have less
than 5 years of experience.
11
5.3 Profile of Respondents: Persons Living with HIV
58% respondents are female.
Profile of Person Living with HIV
81'6
More than 50% represents south
Karnataka
65%
49%
32%
Nearly 50% are in the age group
of 20-30.
Majority of respondents are
Hindus
(77%)
followed
by k.
Christians (19%) & Jains (4%).
65%
50%
31%
j||||19%
16%
1-7
9%
C
£
£
2
, £
S
S
-
13 JI ? i
■C
'J
Age of infection: 30% respondents are living with HIV between 1 to 3 years; 45% of
respondents between 3-7 years & 12% above 9 years.
12
6
Awareness Stigma & Discrimination, HIV/AIDS
6.1 Awareness about Stigma - NGO Heads
Awareness about Stigma - NGO H
90% of NGO-Heads have correctly
identified
‘words’
associated
with
Stigma. (Blaming, name calling, judgmental,
Correct Response
spreading irrational fears about a person or
behaviour....)
Wrong Response
10%
Only 10% (2) of respondents have low
awareness.
6.2 Awareness - HIV/AIDS & S&D - NGO Heads
This graph presents the level of awareness about HIV, AIDS, stigma & perception about same
sex among NGO-Heads.
% of correct Answers on HI V, AIDS and Stigma - NGO H
86% of NGO-Heads (Hindus) know what
HIV is while 83% (Christians) and 100%
(Muslims) were able to correctly state
what HIV is.
120%
ItXH'u
80%
50%
40%
The study asked respondents about
‘what AIDS stands for’. 93% of NGOHeads (Hindus) & 83% NGO-Heads
(Christians) correctly responded.
20% :
0%
What is I IVt
'Ahat is AIDS-'
What is S-igin.-i!'
» Christi.'n
33'X
83%
100%
■ Muslirr
lOOii,
0%
100%
« Hindi
8b %
100%
NGO-Heads
(Christians
&
Muslim) & 86% NGO-Heads (Hindus) correctly stated what stigma is.
More than half of Hindus disapproved same sex relationship, while only 29% Christians and 6%
Muslims disapproved the same. There is greater acceptance about same sex relationship
among NGO-Heads belonging to Christianity and Islam.
13
6.3 Awareness & Protection - HIV/AIDS NGO-Heads
% of NGO Heads who are comfortable to interact
with PLHIV fearing no infection
120%
100%
80%
100%
H
100%
100%
L™ « ■
33%
Respondents belonging to age group
|
79%
71%
31-50 are less comfortable to interact
with PLHA.
60%
60%
40%
NGO-Heads with Hindu background
If
are
20%
0%
2
u>
O
8
8
I
i
Age
comfortable
by
followed
Christian to interact with PLHA.
I
Q
less
100% Muslims respondents state they
3
are
Religion
comfortable
interact
to
with
PLHAs.
Only 80% of respondents in the age
category 21-40 & 51-60(75%) believe that
condom can protect from HIV infection
while 100% believe so in the age category
of 41-50.
67%
NGO-Heads
with
Christian
background believe condoms can protect
from HIV infection.
Overall 86% believe condoms can protect
from HIV infection.
% of NGO Heads believe that condoms can protect from HIV
Infection
120
100
100
80
80
IM
75
80
.. 67™-
Ilf
60
40
20
0
r-j
Q
uj
£
Q
O
Ago
iiii
iir.. fi.
I
f
Religion
6.4 Common Myths & Misconception - NGO Heads
•
•
•
16% of NGO-Heads believe that having sex with a virgin will cure them of HIV & taking
some medicine before sex can protect them from HIV infection.
38% feel that PLHA should be kept at a distance from other patients fearing infection.
Around 24% feel that PLHAs should not have sexual desire fearing infection.
14
6.5 Awareness about S&D - Religious Heads (RH)
% of RH who identified correctly words
associated with S&D
The graph states the extent of correct
knowledge about stigma & discrimination
among Religious Leaders.
3%
»0
® 1-3
21%
4-6
Most of the RH can identify either one or
more words associated with S&D. Only 59%
of RH could identify more than 7 key words
associated with S&D.
»7-9
Only 3% (1 RH) has not identified any words
associated with S&D.
Correct Mode of HIV transmission - RH
>"<'
'
a’’',
The pie chart states that only 11% of RH
have correct knowledge about modes of
HIV transmission without any myths /
misconception.
,
79% of RH know all fours modes of
transmission but also have myths &
misconception.
® Correct Knowledge without any trisconception
Around 10% of respondents do not know
how HIV spreads and have myths and
misconception. 10% of RH are not aware
of correct modes of HIV transmission.
® Coi reel knowlecjje about -IIV trarsriiision but lias myths & nisi once Jtion
Incorrect awareness about rnoce of transmission with myths & misconception
15
6.6 Knowledge about Protection from HIV Infection-RH
Knowledge about protection from HIV Infection
ig
100%
100%
92%
31-40
41-50
51-60
« Using Sterilized needles
Christian
« Tested blood
36%
67%
fl
Hindu
Muslim |
® Using condoms
I
100%
Except for RH-(Sikh & Buddhist),
none of RH have 100% awareness on
“how to protect from HIV Infection”.
As low as only 36% RH (Hindu) think
“Condoms as potent protection
products”. While 100% RH (Christian)
think condoms is one of the ways to
protect oneself from HIV infection.
Others
RH belonging to age group 41-50
seem to be having lesser knowledge
about protection methods
Knowledge about HIV, AIDS & Stigma - FA:
Overall 81% & 73% of FA stated what HIV & AIDS stand for respectively.
Respondents in the age group 21-30 have relatively more knowledge about HIV, AIDS & Stigma
over other age category.
Friendly Advisors have the following myths and misconceptions about HIV / AIDS: They are,
•
•
Only 12% state that HIV is curable;
15% state that ‘having sex with virgin will cure a person of HIV’
Regarding S&D, 100 % respondents identified key words related to Stigma. However, 54% of
respondents stated that Stigma & discrimination are one and the same. 19% stated that stigma
leads to discrimination. 23% of respondents believe that there is no relationship between stigma
& discrimination.
16
6.7 Experience of S&D - Friendly Advisor (FA)
E»p»rl«nctd th« stigma and discrimination situation
92% of respondents
experienced S&D.
have
personally
No casts |0). 17.
High 1(.427.
Lows cases
|s»2|. 23%
' ( I
More than 42% have experienced high level
of S&D (over 5-7 instances of being
stigmatized or discriminated)
Medium |34|. 27%
38% of respondents have stated to have lost
jobs because of their HIV positive status.
Most of those who lost jobs are females
(80%).
6.8 PLHA perceived as HIV spreaders - FA
□
j
This graph illustrates what
Friendly Advisors things about
people who are positive. (It is
to be noted that all FAs
themselves are HIV positive)
PLWV peicelved as spr&aders of HIV ■ FA
PLHIV lor Piddle Hwlth |
.... Wl?
Dlsagiee, 69
DIsclos• PLKV nanrn In public
Agr>
DiWH.35
Careless attitude of PLHIV • Infect |‘..............
others
Should not have
PLHIV not to visit hospital froqusntty
for far of Infecting others
pr.
AtrftW............. .•
>'
^.33
I
fgltWee.W
Cisagree, 62
Disagree, 73
I
31% feel that PLHAs to be
separated keeping in mind the
public health issues & 27%
y state not to visit hospital
frequently for fear of infecting others.
65% respondents feel that careless attitude of PLHA contribute to HIV infection & 38% feel that
PLHA should not have sexual desire since it may fuel further infection.
17
INTERNAL STIGMA - FA
7
7.1 Internal Stigma - Friendly Advisor.
Chart showing % of FA "Feeling guilty & feeling they are nut as good as
others"
100%
90%
m;
®5*'
Overall 77% of FA feel guilty about
being HIV positive.
80%
00%
70%
Around 68% feel that they are not
as good as others.
60%
50%
40%
30%
20%
100% of those who are infected
with HIV for less than one year feel
guilty. Those who are attained
higher education level feel less
77%
63%
J guilty and have increased self
worth.
10%
0%
0-01 | 2-5 | 6- 10
21 ■ 30 31-40
Fitting Guilty
» Not as good as other
Age
85% | 75%
62%
HIV t since
33%
~33%
63%
57%
67%
100%
80%
7.2 Disclosure & Risk... - FA
z
Respondents in the age
category of 21-30 have
disclosed maximum when
compared to other age group.
Disclosing HIV status & Risk -FA
I □ Disclosed status @ Disclosing is risky □ Reject after knowing)
100%)
80%,
|43%J
297J
29%
29°/J
|21%l
50%
60%,
L
40%,
20%
0%>
52%
21-30 |
29»1
31 -40
43% —
19%
I 41-50 I
0 - 01
38% —
__
_.
2-5
|
In the same age group, most
of the respondents felt it is
risky to disclose one’s HIV
status.
6 - 10
Post disclosures, most of
them have felt that they were
rejected by other due to their HIV positive status. The maximum rejection is been in the age
group of 21-30 years.
Age
HIV+ Since
Overall, more than half (67%) feel disclosing HIV status is risky. 81% have disclosed their HIV
status to someone who is ‘close to them & 59% of those who disclosed have faced rejection.
18
7.3 Disclosure & Rejection - FA
% of FA responding "Yes" to
The graph above illustrates the kind
of rejection Friendly Advisors have
faced post disclosing their HIV
—--------status.
60% •
50%
50% . . -.. .
40% 4 — 30%
38%
Bi
■.....
20% •...
10%
0% -i
Boon denied to religious Properly (Gold, Cash & Lost respect within the
rites Fixed asset) taken away family and community
38% FAs have experienced denial to
religious rites. Around 50% (54%
female & 46% male) state that their
property (gold, cash, fixed assets)
was taken away. 33% feel they lost
respect within family and community.
Stopped socializing with some people because of their reactions to
you having HIV?-FA
People don’t want you around their children once they know you
have HIV? - FA
*Yes
6-10
+
>
2-5
§
PUC
I
Secondary
Ul
Primary
a>
31 -40
<
82%
75%
0-01
62%
■
f
■
s
o
21-30
•O
0%
O
20%
a Yes
40%
60%
2
5
io
o
<x>
e
807,
W
Age
Education
o
HIV + since
•
Around 57% of FAs feel that neighbors / others don’t want to be with their children’.
•
Respondents in the age group of 41-50 have stated that they have stopped socializing
because of other reactions / behaviour towards self. The younger FA are least affected. The
education background seems to have a role in determining the extent of socializing post HIV
infection.
19
8
Values - Delink Sin, Sex & HIV
8.1 Perception about PLHA & HRGs - NGO H
Morality Perception about PLHIV - NGO-H
1 L»0
I /Z
zz
8
S
100
-
jo
//
s
/z1
e
52
■
d
52
'z
Z
MB 57
57
0
i 20
40
60
80
100
120
•
More than 90% of NGO-Heads disagree with negative statement about PLHAs which is
encouraging. The negative statements/words are, PLHAs cannot lead normal life, they do
not have rights, HIV infection is like death sentence, PLHAs deserve to die and they are
cursed.
•
While more than 50% & less than 60% of NGO-Heads agree to common perceptions about
PLHAs such as PLHAs spread infection, already dead, promiscuous.
Morality Perception about Sex workers - NGO-H
100
90
SO
70
60
90
50
NGO-Heads perceive Sex workers
as spreader of HIV infection (76%)
& immoral (62%).
40
30
20
10
0
X
96 of NGO H Agreeing
More than 90% believe that SW are
pushed into the trade, are not sex
maniacs (62%) & are not burden to
family and society (76%).
H of NGO H Disagreeing
8.2 Perception about Sexuality - NGO H
•
•
•
81% NGO-Heads stated hetero-sex acceptable. (2 no answer, 1, don’t know, 1 bad)
81% state that Homo-sexuality is ‘Bad’ (1 no answer, 2, don’t know, 1 good)
24%
state
that
sex
is
only
for
‘reproduction’
only.
20
i
8.3 Perception about PLHA - RH
RH (Hindu) have negative
perceptions about PLHA.
Majority feel PLHAs are
promiscuous,
sinner,
careless and deserve to
die followed by others
(Sikh & Buddhist).
% of Religious Heads agreeing that PLHIV are .......
18
Promiscuous _
Sinners
-
”
~~~.......... ’
64
I
r
Careless _
•
9
86
36
36
Deserve to die
100
They have rights
50
They spread infection
J
32
31
14
4
63
48 ----------------- 1..
Can lead normal life■ ----------------- r
Christian
Hindu
Muslim
J
.Others!.
________ >
Most of the RH (76%) feel
PLHA have rights and can
lead normal life. (RHMuslim seem to differ
here (33%)
8.4 Perception about HRGs - RH
% of Relegious Heads agreeing thatHRG...
E
Imp to know how
one got HIV
10 i.
36
JI___
|
HIV due to immoral |
MSM-TG spreads >
infection
L
110110
45
% of RH subscribing to the statements
aboutHRGs
76%
I 80%
I 70%
I 60%
58%
46%
| 50%
—J
FSW-Spreads r
Infections J
II
0%
20%
|BChristian
-T
40%
63
Wl
59
|
16I
_E
60%
Hindu □Muslim
80%
Others J
100%
\
| 40%
I 304
J :
I' I'
111
| 20%
■-
■
10%
t
0%
FSW-spreac
Infeclicn
'»?
■
■■
MSM-TG spreac
HIV due to
Imp to know how
infections
imrroral behaviour one kx hiv
Majority of RH-Hindus feels that HIV spreads through immoral behaviours, and that MSM &
WSW spread infections. Disaggregated data shows that 91% of RH-Hindu and 100% (Others)
feels that women in sex work spread HIV infections.
Most RH expressed the need to know ‘How one got infected’.
21
8.5 Perception about PLHA & Route of infection - RH
% of RH disagreed to that... .
120
100
13
80
60
9Q
40
20
10
0
PLHIV - Wrong Doer
AIDS, punisment frm
GOD
ss Christian ss Hindu
Non-sexual route deserves more trt...
PLHIV - should be
Ashamed
Muslim Si Others
Only 33% of RH-Hindu
disagreed to the statement
that “PLHA have done
something wrong for them
to get infected”.63% RHHindus felt that people
who are infected through
non-sexual route deserve
more treatment and 90%
of them also felt that
PLHA should be ashamed
of themselves.
5.6 Perception about Sex, Self & HRGs - FA
Associate HIV, sex witli sin and morality • FA
The following graphs states FA perception
about sex and high risk groups (WSW, MSMT, IDUs).
In-between
The following statements were discussed to
arrive at the negative, positive and neutral
perceptions.
•
•
•
Positive
7
•
PLHA should be ashamed of themselves.
PLHA wrong doer
Person infected thru sex & drugs - got
what they deserve.
AIDS is a punishment from God
•
Only 15% of FA responded in negative to PLHA should be ashamed; PLHA wrong-doer;
PLHA got what they deserve & AIDS is a punishment.
•
19% of FA absolutely agreed to the above statements.
•
Rest (66%) have multiple responses - agree, partially agree to disagree.
22
8.6 Perception about HRG - FA
■s
Chart showing % of FA agreeing to negative statements about
100%
90%
10%
70%
00%
50%
40%
30%
20?o
10%
0%
1.. |l3%'
23%
20%
Key Negative Statements asked:
! o,
16%
Women in sex work who spread
HIV.
Homosexuality is the cause for
HIV.
s
&
$
2
5
*
§
£
o
a
I
IDU should be
spreading HIV.
0
0
Age
blamed
for
HIV+ since
Education
« Disagree
MSM should be put behind bar for
spreading HIV.
QAgree
Overall 82% agree to the negative statements about HRGs.
The more literate the lesser the agreement to negative statements.
Ages of infection (0-1 yr) have agreed to all the above statements, while the next category (2-5
yr) have disagreed the most.
8.7 Morality - Comparison
Chart $lK>v.1n8agreementlonefl«ltve statement about PLHIVt HRC-RH. NGO&FA
□ NGOHead
100%
■ RelHead
33%
80%
-------34% -
iiib
60%
- 21%:-
48%
59%
f—_____
40%
62‘Xi
31%
65%
20%
62%
DPLHIV
In most cases, FA have agreed
more to the negative statement
followed by RH and NGO-Heads.
Majority feel that PLHA and Sex
workers must be ashamed and are
responsible for spread of infection
respectively.
0%
<u
hi
¥ «f
0.
■s If n>
hl
J
< “
c
«*
NGO heads in comparison seems to
have more balanced view except
towards sex workers & PLHAs.
07
23
9
Stigma - Willingness & Actions
9.1 S&D- Willingness & Action - NGO H
Chart showing NGO-H willingness to be part of S&D & their response to
Sljgll
83%
64%
iao%
_____
lilial
100%
100%
100%
_ _Christians
100%
100%
__Hindu________
■Willingnessto raise voicein futuietooj
□Wllingnessto participate
Muslim
DPiotestedS&D
□ Needto work on S&D
■
100% NGO-Heads feel the
need to work on S&D and are
willing to be part of S&D.
While
83%
NGO-Heads
(Christians) have protested
against S&D of which only
67% state they would continue
to do so in future too. Among
NGO-Heads (Hindu & Muslim)
J there is increase in the same.
9.2 S&D-Willingness & Action - RH
% of RH willing to be part of S&D Actions
100
80 |
100% of RH have expressed the
need and willingness to be part of
actions against S&D.
!
40 |
20 I'
BuddMU
ChiutUn
Hindu
Muslim
9.3 S&D-Willingness & Action - FA
•
•
•
100% of FA state that they are willing to be part of action against S&D
92% of FA state that they have faith in the linkages and networks working for PLHAs
46% have information about organization working towards reducing S&D
9.4 Self - Assessment -Ability for S&D Actions - FA
•
•
•
96% have stated that they have skills to motivate PLHAs for actions.
92% are comfortable to share their feeling with other PLHAs
96% said they are able to solve their own problems.
24
■a bfr.
10 S&D Assessment - Self & Organization
10.1 Self Assessment Scale
About self □ Rat9d=>3- Self
About Organization
■ Rated between 4 & 5-Self
□ Rated =>3- Qrgn
|
Non-Judg about sex. PLHIVs & HRGs.
ffl Rated between 4 & 5 -Qign
___ ______________ ___
19
zo
Willingness to collaborate on S&D
Able to mainstream S&D
H
Able to stand-up against S&D bhav
Evolve wrk pice policy- Ability
ALZ.
Aware of wrk pice policy
2T
]
J
HE
14
Comf& Confi with HRGs & PLHIVs
2
Aw'ness of PLHIV rights
Op'nss towards PLHIV
Modes of HIV trsns
Able to idfy stigmatizing behv.
Kn'ldge abtS&D?
r.' ■ •
r
iKffl
■1
|
29
19
The study used a tool to understand knowledge, skills and other capacities of NGO-Heads
in relation to S&D. The response to the question had two parts - Self assessment of self
and self assessment of Organization they are working with.
About Self:
Around 24% feel they have low
awareness on work place policy.
Most of the NGO-Heads have assessed
to have higher knowledge, attitude &
skills.
About Organization
Around 24% feel Organization
have low awareness on work place
policy.
19 & 29% of rated low on S&D
awareness & ability to identify S&D
behavior
25
10.2 Institutional willingness & Provisions for S&D Activities RH
Included HIV in religious discourses
80
67
70
60
58
50
.45
50
67% of RH - Muslim stated that they
have included HIV in their religious
discourses followed by 58% Christians,
50% Others (Sikhs & Buddhist) & 45%
Hindus.
40
30
20
55
42
10
0
Christian
Muslim
Hindu
Others
SVes BNO
Existence of policy on HIV/AIDS
120
100
91
100
Interestingly 91% RH-Hindus, 100%
Muslims
stated
they
have
Organizational policy on HIV / AIDS.
'ill
illii
80
GO
50
40
83
20
17 il.
Only 50% of others category and 17%
Christian stated they had Organization
policy on HIV / AIDS
50
0
0
Christian
Muslim
Hindu
Others
^Yes
Provisions for providing HIV info
at Institutional level
120
100
91
100
IBjjW
80
60
SO SO
so SO
40
w Yes
NO
20
Over 90% of RH- Muslims & Hindus
stated that they have provision to
provide information related to HIV at
Organization level. Around half of RH Christian and Others stated they too
have the same.
9
0
0
26
Christian
Hindu
Muslim
Others
11 KEY SUGGESTIONS - RH
The study asked Religious Heads to list few suggestions to reduce stigma & discrimination.
Below are the key suggestions:
11.1 What is the best way to reduce HIV related S&D?
a.
b.
c.
d.
e.
f.
g.
Blanket coverage of awareness programme on HIV & AIDS
Involve Youths (most of RH-C)
Educate Sex workers
Acceptance & Openness towards PLHAs (RH-B)
Use of media (RH-H)
Engage students at college level (RH-H)
Modify social policies & make PLHA part of institutions (RH-M)
11.2 What is the role of Religious Institutions in reducing HIV
related S&D?
a. To be open to PLHAs and show solidarity with them - PLHAs & Others (RH-B)
b. Include HIV in religious discourses; (RH-C)
c. Not to expect much from Religious Institution but to engage NGOs (RH-H)
11.3 What are the key activities of Religious
regarding HIV prevention & reducing S&D?
institutions
a. RH-M/S/B respondents state they are not implementing any activities at present.
b. 42% of RH-C stated they have some programme related to the above (General
Awareness, youths focused, conducting health programmes, C&S programmes,
c. Most of RH-H does not have any activities related to HIV prevention, except for
religious discourses.
11.4 Challenges while working on HIV & S&D Issues?
a. Negative attitude of others since the proposed work is related to sex & sexuality
(RH-H)
b. People may move away from the religious ceremonies and following due to our
association with HIV and sexuality related activities(RH-S)
c. Isolation, less/no support from public, people questioning about religious
institutions priority of S&D & HIV over other important issues; refusal to accept
this problems as problem of Church (RH-C)
d. Non-acceptance by other followers; value judgment about PLHA; (RH-M)
27
12 Summary
The below section summarizes the key findings:
12.1 Awareness of HIV/AIDS & S&D
NGO-Heads:
- High level of awareness about S&D
- Awareness about AIDS is low among some section of NGO-Heads
- Most of S&D statements are ‘Value Driven’.
- Only 86% believe condoms can protect from HIV infection
- Some section of NGO-Heads have myths & misconception related to
HIV transmission & cure
RH:
- Most RH can identify S&D related words & aspects.
- Only 11 % have correct knowledge about HIV transmission
- RH-H awareness level on protection is low
FA:
- Most of them are aware of HIV & AIDS; but have myths &
misconception about transmission
- Aware of basic definition Stigma & discrimination; low on relationship
between the same and manifestation of stigma
- 92% have experienced S&D; most cases women are fired from work
- Low understanding about PLHA issues and rights (1/3rd feel PLHA
to be separated and 38% stated they should refrain from having
sexual desire
4
12.2 Summary - Internal Stigma FA
•
•
•
•
Most (77%) feel guilty of being HIV positive and 68% feel low self worth;
Less the duration of infection more the guilty.
More than 81% have disclosed; 59% have faced rejection.
Impacted their social life, community interactions, restriction on religious
rites and denial of property rights.
28
12.3 Summary - Values & Morality
•
•
•
•
Most of the respondents (NGO, RH & PLHA) have issues with HRGs &
PLHAs; they do not approve of their activities.
Most of the opinions are value driven.
Most of NGO-Heads don’t accept people's sexuality; true of FA & RH.
FA have strong negative opinion about PLHAs & sex workers, followed by
RH & NGO-Heads.
12.4 Summary - Willingness & action against S&D
•
•
•
•
•
•
All respondents (RH, NGO-Heads & FA) feel the need to work on S&D and
are willing to be part of action.
Most of them have positively stated to 'protest any form of S&D in the
future’.
Most of FA have faith in networks and linkages; positive statement for
collaboration.
Most of FA feel they have requisite knowledge, skills & attitude for action
against S&D.
NGO-Heads: Needs support in evolving work place policy and to get
comfortable with HRGs.
RH: Half of Religious Institutions are already implementing HIV & S&D
related activities and are willing to improve on the same.
12.5 Summary - Key suggestions & challenges from RH
•
•
•
•
Most of the RH suggests awareness programmes & involvement of youths.
Influence dominant societal norms and active participation of infected &
affected at Organization Level.
Most of Hindu RH has less/no activities regarding HIV & S&D.
Challenges: withdrawal; question Religious Institutions priorities.
29
ANNEXURE
QUES TIONNARIE
ji£-
A/ CPHE - SOWitA^'^
(
Kora i n a ng a la;\g H
\<z^B<-nigal°re - 3<„^. /
---------------------- '
Self Assessment sheet
1. Expand the terms:
X HIV:
X
AIDS:
2. Modes of transmission of HIV are listed below,
(Please tick the ones through which HIV is transmitted from one HIV infected to another, and put ’X’
for the ones through which HIV is usually NOT transmitted)
a) Mosquitoes____________________________________________________
b) Hugging_________________________________________________________________
c) Heterosexual practices — penetrative________________________________
d) Kissing_______ _______________________________________________
e) Using the same toilet____________________________________________
f) Blood transfusion_______________________________________________
g) Lesbianism (female having sex with female)__________________________
h) Sharing blades for shaving in barber shop____________________________
i) HIV infected mother to child______________________________________
j) Oral sex___________
k) Sharing same syringes for injections________________________________
l) Heterosexual practices - non-penetrative____________________________
m) Anal sex
______________________________________________
n) Sharing food
3. How can we prevent acquiring HIV/AIDS?
a) Using sterilized needles________________
b) Accepting HIV tested blood for transfusion
c) Using condoms_______________________
d) Don't know
4. Can HIV infection be cured?
a) Can be cured in five years________________
b) Can be cured in ayurvedic system of medicine
c) No cure as of now______________________
d) Using anti-retroviral drugs_______________
e) Don't know
5. What do you mean by Stigma? Please identify words associated with Stigma.
a) Positive attitude________________________________________________
b) Blaming______________________________________________________________
c) Name calling__________________________________________________________
d) Condemnation_________________________________________________
e) Isolation______________________________________________________
f) Rejecting_____________________________________________________
g) Negative attitude
Catalyst Management Services - Self Assessment Format for Heads of Religious
Institutions
h) Shaming______________________________
i) Non-judgmental ______________________
6. State your agreement to below statement
Agree
Disagree Neutral
a) People with HIV should be ashamed of themselves
1
2
3
b) A person with HIV must have done something wrong.
1
2
3
c) AIDS is a punishment from God
1
2
3
d) Person infected through unsterilized needles and blood in hospital
settings legitimately deserve to receive higher care and treatment than
those infected through sexual route
1
2
3
7. State your agreement on Person Living with HIV -PLHIV
Catalyst Management Services - Self Assessment Format for Heads of Religious
Institutions
Agree Disagree Neutral
a) Promiscuous
1
2
3
b) Sinners.
1
2
3
c) Careless ..
1
2
3
d) Cursed
1
2
3
e) Not Lucky.
1
2
3
f) Foolish.
1
2
3
1
2
3
1
2
3
1
2
3
1
2
3
1
2
3
1
2
3
1
2
3
1
2
3
Agree
Disagree
Neutral
1
2
3
1
2
3
1
2
3
d) People living with HIV should still be allowed to get married, as long as
both partners know about their status?
1
2
3
e) It is important to know how one gets infected from HIV
1
2
3
g) They Didn’t Listen.
h) Good for Nothing.
i)
Deserve To Die.
j) Already Dead
k) Waste Lots of Money.
1) They Have Rights.
m) They Spread Infection.
n) They Can Lead Normal Life.
8. State your agreement to below statement
a) It is female sex workers
who spread HIV
b) It is Men have Sex with Men & Transgender who spread HIV
c) HIV Spreads due to immoral behavior.
Catalyst Management Services - Self Assessment Format for Heads of Religious
Institutions
f)
2
1
Consent from Patients should be taken before being tested for HIV?
3
9. State your opinion to below statement
a) Did you ever interact with HIV positives or their family members?
Yes
No
Don’t know
b) Did you come across any stigmatizing situation?
Yes
No
Don’t know
c) Are you interested to be part of the stigma reduction activities?
Yes
No
Don’t know
d) Do you feel the need of working towards reducing stigma and
discrimination?
Yes
No
Don’t know
a) Have you included HIV/AIDS as topics in your religious
discourse?
Yes
No
Don’t know
b) Do you have provisions to provide information on HIV/AIDS at
your Institution (apart from religious discourse)?
Yes
No
Don’t know
c) Person living with HIV have equal opportunity as other to become
head of any religious institution?
Yes
No
Don’t know
d) Does your religious institution have policy on HIV / AIDS & antistigma & discrimination?
Yes
No
Don’t know
10. Please respond to the below statements:
11. According to you, what is the best way to reduce HIV related stigma &
discrimination?
12. What roles do you see for religious and spiritual leaders in reducing HIV related
stigma & discrimination?
Catalyst Management Services - Self Assessment Format for Heads of Religious
Institutions
13. What are the current activities of your institutions regarding HIV prevention &
Reducing HIV related stigma & discrimination?
14. What do you think are the key challenges that an organization like yours is
likely to face while working on an issue like HIV-AIDS?
Catalyst Management Services - Self Assessment Format for Heads of Religious
Institutions
Baseline study on stigma and
discrimination-STAND Program
Interview Schedule for NGO Heads
INFORMED CONSENT
(The investigator shall explain in the following manner the purpose
of the interview and obtain the verbal informed consent from the
respondent)
Namaskara,
My name is
.....
I work as a research investigator for
Catalyst Management Services,
part of Catalyst Group and are
currently supporting INSA-India an organizations in Bangalore working
in Health Domain to promote the individual capabilities of dealing
with issues of concern.
This study is a humble attempt to understand
more about HIV Stigma. The findings of this study would help STAND
Program
and
associated
agencies
in
better
understanding
the
sensitivity and help in the efforts: for improving the situation
through reducing stigma and address the issues of concern through
evidenced informed programme and advocacy. You have been carefully
selected to represent the Non Government Organization. Your views and
responses are very important for this study. I would like to
interview you as part of the study. The interview would take
approximately 45 minutes to complete. I would like to ask you a few
questions about yourself, your organization. Staff and practice,
social relationships, opinions about various issues, HIV Stigma and
discrimination etc. All these questions are found to be unavoidable
in understanding the issues related to Organization and PLHIV; please
excuse me if any of the questions hurts your sentiments. The
participation in this study is voluntary. There is no provision for
monitory compensation for attending the interview. We would very much
appreciate your participation in the study. Whatever information you
provide will be kept strictly confidential and your personal data
will not be shared with other persons. However you have the freedom
to decide not to answer any particular question, a set of questions
or all the questions. If you have any grievance related to the
interview or the study, you may inform (Mr. Chandrashekar Gowda,
Swasti; Phone: 9342531009) who would respond to it.
At this moment,
would you like to ask me anything more about the study? (Clarify all
the queries the respondent has) . Now may I have your consent for the
interview?
Respondent Refuses, Record Reason and other relevant data and end
Interview
Respondent gives consent for the interview: i
Signature
INTERVIEWER/DATA ENTRY INFORMATION
Study Number
[
District Code
District Name.
Date of Interview (DD/MM/YY)
Name of the Investigator
....................
Place of Interview
..............
Duration of interview in minutes (Fill after the
interview is completed)
Have you been interviewed elsewhere in Karnataka during past
month for the STAND project?
______
1
Yes
No
0
Consent Status_____________________________________________________
Refused for the survey (Record verbatim below)
1
Agreed for the survey
Respondent not Eligible
£
3
Reason for refusal (Record
Verbatim)
NON-RESPONSE DATA: [RECORD THE FOLLOWING INFORMATION FOR NON
RESPONSE]
AGE- I_1 I
Completion Status
Completed Interview
1
Did not complete interview
2
Respondent Refused
3
Respondent already taken part in the survey elsewhere
4
Language of the interview... ... ........ J. 2.. D
Supervisor Details (To be filled in by supervisor)
Name
Code
Date of Scrutinizing the interview
schedule (DD/MM/YY)
Signature of supervisor__________
Data Entry‘
—
Name of Data Entry Operator (DEO)..
Date of Data Entry (DD/MM/YY)
Record No
Signature of the DEO......................
Data Entry Supervisor
Name.
Date of data entry checked (DD/MM/YY)
Signature............................
.....
Primary Information
1. Date of Registration:
2. Name of the NGO:
3. Postal address of the NGO:
4. Focus areas of NGO:
5. What are NGO's activities in your district (Bidar/Kolar)?
6. Does any of your current activities relate to HIV and AIDS?
No
2
If Yes:
A. What kind of activities?
B. Who are the primary target audiences?
7. Do you want to start activities related to HIV and AIDS?
Yes
1
No
2
If Yes:
A. What kind of activities?
B. Who will be the target beneficiaries of those activities?
8. Do you have information about other organisations that have
activities regarding HIV and AIDS?
Yes
1
No
2
If Yes:
A. Name of the NGO's
B. What are their activities?
9. Have you collaborated with NGO's and/or other organisations?
Yes
1
No
.. 2
If Yes;
A. Which NGO's?
........................................
B. How do you collaborate?
No.
1. Demographic Profile
QUESTIONS ___________________
CODING CATEGORIES
How old are you?
AGE
SKIP
IN COMPLETED YEARS... I I
I
1.1
What is the highest level of
education you have completed?
DON'T KNOW
98
NO FORMAL SCHOOLING.
.0
SCHOOLING STANDARD.
1.2
GRADUATE & ABOVE
OTHER
13
97
(SPECIFY)
What is your religion?
1.3
DON'T KNOW
98
HINDU
MUSLIM
CHRISTIAN
OTHER
1
2
3
97
(SPECIFY)
DON'T KNOW
Your designation/position in the
organization?
98
POSITION
97
(SPECIFY)
1.4
DON'T KNOW
Since how long are you working with
this organization?
98
YEARS.
MONTHS.
1.5
DAYS.
What is the total staff strength
your organization
1.6
of
RECORD THE NUMBER OF STAFF
Is your organization working in other
districts of the state?
1.7
DON'T KNOW
98
NO OF STAFF.
OTHER
1
97
(SPECIFY)
DON'T KNOW.
.98
YES.
1
NO.
OTHER
0
97
(SPECIFY)
Is anybody living with HIV working as
a staff member in your organization?
1.8
DON'T KNOW.
98
YES.
NO.
OTHER
1
0
97
(SPECIFY)
DON'T KNOW.
.98
4
2. Fear of transmission and disease
No
2.1
QUESTIONS
CODING CATEGORIES
What is HIV?
CORRECT ANSWER..
CIRCLE CORRECT ANSWER (1) IF THE RESPONDENT
SAYS IT IS A MICRO ORTANISM/VIRUS
What is AIDS?
2.2
2.3
CIRCLE CORRECT ANSWER (1)IF THE RESPONDENT SAYS
IT IS THE TERMINAL STAGE OF HIV INFECTION
Can you know whether a person has HIV
(the virus that causes infection) by
looking at him/her?
WRONG ANSWER
OTHER
SKIP
1
0
97
(SPECIFY)
DON'T KNOW.
.98
CORRECT ANSWER..
WRONG ANSWER
OTHER
1
0
97
(SPECIFY)
DON'T KNOW.
. 98
YES.
NO.
OTHER
1
0
97
(SPECIFY)
Is HIV infection curable?
2.4
DON'T KNOW.
.98
YES.
NO.
1
0
97
OTHER
(SPECIFY)
Have you ever felt uncomfortable to
interact with PLHIV for fear of
infection?
2.5
2.6
YES.
NO.
OTHER
. 1
0
97
DON'T KNOW.
.98
YES.
NO.
OTHER
1
0
97
(SPECIFY)
Have you ever avoided opportunity of
having food, being together, etc
because the other person is HIV
infected?
Have you ever avoided interacting
with sex workers and MSM because of
their sexuality?
2.8
.98
(SPECIFY)
Have you ever felt scared to interact
with known PLHIV because others may
think you are one of them?
2.7
DON'T KNOW.
DON'T KNOW.
.98
YES.
NO.
OTHER
1
0
97
(SPECIFY)
DON'T KNOW.
.98
YES.
NO.
OTHER
1
0
97
(SPECIFY)
DON'T KNOW.
.98
HIV-Positive women can get pregnant.
2.9
YESNO.
0
97
OTHER
(SPECIFY)
Having sex with a virgin can cure
HIV/AIDS in a person.
2.10
DON'T KNOW.
.98
YES.
NO.
OTHER
1
0
97
(SPECIFY)
A person can not get HIV from having
sex just one time
2.11
DON'T KNOW.
.98
YES.
NO.
OTHER
1
. . 0
97
(SPECIFY)
Can condom prevent the person from
getting HIV?
2.12
DON'T KNOW.
.98
YES.
NO.
OTHER
1
0
97
(SPECIFY)
2.13
Using any medicine before or after
unprotected sex with person living
with HIV can prevent infection
DON'T KNOW.
.98
YES.
NO.
1
0
97
OTHER
(SPECIFY)
2.14
The HIV virus is found within saliva.
Therefore, it is possible to get HIV
from kissing.
DON'T KNOW
.98
YES.
NO.
OTHER
1
0
97
(SPECIFY)
DON'T KNOW
98
“ ZZ_
coding Categoric_____ __
No.
Questions and Filters
2.15
Please tell me if you have a lot of
fear of becoming infected with HIV,
a little fear, no fear, or do not
know, if you:
"]
[read the list one at a time]
a. Hug a person with HIV
Lot of Fear
Little Fear
No Fear
DK
HUG...
1
2
3
9
WORK NEXT TO.
1
2
3
9
c. Care for a person with HIV
CARE FOR.
1
2
3
9
d. Have food together
HAVE FOOD TOGETHER...
1
2
3
9
e. Using the same toilet and
drinking water facilities
TOILET & DRINKING WATER.
1
2
3
9
b. Work next to a PLHIV
6
3. Awareness of Stigma
No.
QUESTIONS
CODING CATEGORIES
SKIP
What are the issues surrounding
PLHIVs?
3.1
(Make a list without probe)
What do you mean by stigma?
3.2
CIRCLE CORRECT ANSWER (1) IF THE
RESPONDENT SAYS THINKING BADLY ABOUT PLHIV
How can one identify Stigma?
3.3
CORRECT ANSWER
WRONG ANSWER
OTHER
1
0
9
(SPECIFY)
DON'T KNOW.
.98
THROUGH PEOPLES ACTIONS.
JUDGEMENTAL ATTITUDE
BLAMING
SPREADING IRRATIONAL FEAR
OTHER
1
97
(SPECIFY)
What are the general stigmatizing
behaviours?
3.4
BLAMING.
1
SPREADING WRONG INFORMATION
ABOUT THE PERSON
.2
KEEPING DISTANCE.
.3
ABUSING.
4
OTHER
97
(SPECIFY)
How will stigma impact on
individual's quality of life?
3.5
LOW SELF-ESTEEM.
DRIVE TO COMMIT SUICIDE.
1
.2
LOW MOTIVATION.
NOT ACCESSING SERVICES.
IT DOES NOT IMPACT.
OTHER
.3
.4
5
97
(SPECIFY)
Generally who are the most
FSWs.
stigmatized?
MSMs.
IDUs.
TRANSGENDER.
PLHIV.
SC/STs.
OTHER
3.6
.1
.2
..3
.4
.5
6
97
(SPECIFY)
Who are the people who stigmatize
others?
3.7
(of these who are stigmatizes the most)
(Make a list without probe)
4. Values - Delink Sin-Sex and HIV
4.1
Indicate your agreement or
disagreement with each
statement: [read the list one
at a time]
a. People with HIV should
be ashamed of
themselves.
4.2
Partially Agree/
Not Sure
Disagree
ASHAMED.
1
2
3
b. A person with HIV must
have done something
wrong.
WRONG.
1
2
3
c. AIDS is a punishment
from God.
GOD.
1
2
3
d. It is the sex workers
who spread HIV.
SEX WORKERS.
1
2
3
e. It is MSM & Hijras who
spread HIV
MSM & HIJRAS.
1
2
3
I will read out words about
PLHIVs, please let me know
your agreement or
disagreement?
PLHIV
4.3
Agree
Sex workers
Agree Partially Agree Disagree
PROMISCUOUS
1
2
3
SINNERS. .L
.....
1
2
3
CARELESS
1
2
3
CURSED
1
2
3
NOT LUCKY
1
2
3
FOOLISH
1
2
3
THEY DIDN'T LISTEN
1
2
3
GOOD FOR NOTHING
1
2
3
DESERVE TO DIE
1
2
3
IT'S THEIR OWN FAULT. ...
1
2
3
PUNISHED BY GOD
1
2
3
DEATH SENTENCE
1
2
3
WALKING SKELETON
1
2
3
ALREADY DEAD
1
2
3
WHO CARES IF THEY DIE
1
2
3
NO FUTURE. LIFE HAS ENDED.1
2
3
WASTE LOTS OF MONEY
1
2
3
THEY HAVE RIGHTS....
...
1
2
3
THEY SPREAD INFECTION
1
2
3
THEY CAN LEAD NORMAL LIFE.l
2
3
Agree Partially Agree Disagree
IMMORAL
'...................................... .
1
2
3
EVIL...................................................... .
1
2
3
SINNERS
1
2
3
PROMISCUOUS
..................
1
2
3
NO SHAME.
1
2
3
LAZY TO WORK
1
2
3
STEAL HUSBANDS
1
2
3
VICTIM OF SEXUAL EXPLOITATION....
1
2
3
BREAK MARRIAGES
1
2
3
SEX MANIACS
1
2
3
DON’T PRACTICE SAFE SEX...
1
2
3
DON’T RESPECT THEIR BODIES
1
2
3
PUSHED AGAINST HER WILLINGNESS1
2
3
POOR-NEED MONEY
1
2
3
Burden to family and society. 1
2
3
Spread AIDS and STDs
1
2
3
4.4
4.5
4.6
What do you associate sex
with?
Please state whether the
following are good & bad
HIV spreads due to immoral
behavior.
(HAVING MORE THAN ONE
PARTNER)
4.7
4.8
4.9
Only those who are infected
with HIV by medical needles
or blood in a hospital
deserve to receive care and
treatment.
People with HIV should
still be allowed to get
married, as long as both
partners know about it.
It is important to know how
did one get infected from
HIV
INTIMACY
..
SIN
........
FUN....^.......
........
IMMORAL
........
LOVE
.
FORBIDDEN
.. .....
ONLY FOR REPRODUCTION..
ONLY PHYSICAL URGE
YES
1
1
1
1
1
1
1
1
SEX WITH ONE'S SPOUSE
SEX FOR PROCREATION
SEX WITH THE OPPOSITE SEX
SEX AFTER YOU GET MARRIED
SEX AT NIGHT
.............
SEX WITHOUT A CONDOM
SEX WITH SEX WORKER
SEX FOR PLEASURE
SEX BEFORE YOU GET MARRIED
SEX IN THE BUSH
....
SEX ANY TIME OF THE DAY
SEX IN A BED..
SEX WITH A CONDOM
SEX WITH THE SZXME SEX/GAY SEX...
YES.
NO.
OTHER
NO
2
2
2
2
2
2
2
2
Good
1
1
1
1
1
1
1
1
1
1
1
1
1
1
Bad
2
2
2
2
2
2
2
2
2
2
2
2
2
2
.. 1
0
97
(SPECIFY)
DON'T KNOW.
.98
YES.
NO.
OTHER
1
0
97
(SPECIFY)
DON'T KNOW.
.98
YES.
NO.
OTHER
1
0
97
(SPECIFY)
DON'T KNOW.
.98
YES.
NO.
OTHER
1
0
97
(SPECIFY)
DON'T KNOW.
DK
3
3
3
3
3
3
3
3
.98
9
DK
3
3
3
3
3
3
3
3
3
3
3
3
3
3
5. People
living
with
HIV
infection
perceived
as
spreaders
of
infection.
No.
QUESTIONS
CODING CATEGORIES
Can PLHIV continue to socialize after
he/she is infected with HIV
YES.._.
NO.
OTHER
5.1
SKIP
1
0
97
(SPECIFY)
People with AIDS should be offered
sympathy
5.2
DON'T KNOW.
.98
YES.
NO.
OTHER
1
0
97
(SPECIFY)
5.3
Do you feel patients with HIV should
be kept at a distance from other
patients?
DON'T KNOW.
.98
YES.
NO.
OTHER
1
0
97
(SPECIFY)
5.4
Clothes and linen used by HIV
patients should be disposed of or
burned.
DON'T KNOW.
.98
YES.
NO.
OTHER
1
0
97
(SPECIFY)
Patients should be tested for HIV
before any surgery.
5.5
DON'T KNOW.
.98
YES.
NO.
OTHER
1
0
97
(SPECIFY)
5.6
Most people with HIV don't care if
they infect other people with the
HIV?
DON'T KNOW.
.98
AGREE
DISAGREE
OTHER
1
2
97
(SPECIFY)
People living with HIV should not
have sexual desires, because they may
spread HIV to others.
5.7
5.8
DON'T KNOW.
98
AGREE
1
2
97
DISAGREE
OTHER
(SPECIFY)
If hospital staff is infected with
HIV she/he must quit the job because
HIV will spread while treating the
patient.
DON'T KNOW.
98
AGREE
DISAGREE
OTHER
1
2
97
(SPECIFY)
DON'T KNOW.
98
6. Enacted Stigma or Discrimination
6.1
Do you know someone who has had the
following happen to him/her in the
past 12 months because of having HIV
or AIDS?
[read the list one at a time]
No
Yes
No.
a. Been excluded from a social
gathering.
EXCLUDED
1
2
9
b. Been abandoned by spouse/partner.
ABANDONED
1
2
9
c. Been verbally abused or teased.
ABUSED/TEASED.
1
2
9
d. Been physically assaulted.
ASSAULTED.
1
2
9
e. Been fired from work.
FIRED
1
2
9
f. Had property taken away?
PROPERTY TAKEN
1
2
9
g- Been denied health services.
QUESTIONS
DENIED HEALTH SERVICES
CODING CATEGORIES
T
2
9
SKIP
Did you come across any stigmatizing
situation?
YES.
NO.
OTHER
1
0
97
6.2
(SPECIFY)
Did you ever interact with HIV
positives or their family members?
6.3
DON'T KNOW.
.98
YES.
NO.
OTHER
1
0
97
(SPECIFY)
Did you ever raise voice against
stigma?
6.4
(if the person has not come
across any S&D events then ask the
YES.
NO.
OTHER
1
0
97
(SPECIFY)
.98
If ever you come across any
YES.
NO.
OTHER
1
0
97
your voice?
stigma reduction activities? (if you
6.7
98
DON'T KNOW.
Are you interested to part of the
6.6
DON'T KNOW.
following question)
incidents of S&D, will you raise
6.5
DK
are not part of any so far)
(SPECIFY)
DON'T KNOW.
.98
YES.
NO.
OTHER
1
0
97
(SPECIFY)
DON'T KNOW.
.98
Do you feel the need of working
YES.
towards reducing stigma and
NO.
OTHER
1
0
97
discrimination?
(SPECIFY)
DON'T KNOW.
.98
7. Internalized Stigma with People Living with HIV?
Does people's attitude about HIV make
PLHIV feel worse about them?
7.1
(SPECIFY)
Do you think telling someone about my
HIV status is risky.
7.2
DON'T KNOW.
98
AGREE
DISAGREE
OTHER
1
2
97
(SPECIFY)
Do you feel that people who know
about person being HIV will inform
others about their status?
7.3
DON'T KNOW.
98
AGREE
DISAGREE
OTHER
1
2
97
(SPECIFY)
If person Stigmatized or
discriminated can he/she seek
justice?
7.4
1
2
97
AGREE
DISAGREE
OTHER
DON'T KNOW.
98
AGREE
1
2
97
DISAGREE
OTHER
(SPECIFY)
DON'T KNOW.
98
12
8. Organizational Policy & Environment.
8.1
Does your organization have written
workplace policy for HIV & AIDS?
YES.
. .
NO.
1
0
OTHER
97
(SPECIFY)
DON'T KNOW.
8.2
Does your organization have systems
to identify issues related to S&D HIV?
.98
YES.
. .
1
NO.
0
OTHER
97
(SPECIFY)
8.3
Is your staffs trained on modes of
transmission of HIV & AIDS?
DON'T KNOW.
.98
YES.
.
1
NO.
0
OTHER
97
(SPECIFY)
8.4
Are your staffs oriented on S&D
issues?
DON'T KNOW.
.98
YES.
. .
NO.
1
0
OTHER
97
(SPECIFY)
8.5
Does your organization have
advertised "equality employment
provides" that includes equal
opportunity to PLHIVs
DON'T KNOW.
.98
YES.
. .
1
NO.
0
OTHER
97
(SPECIFY)
DON'T KNOW.
8.6
Is there a different policy or any
concession awarded to PLHIVs working
in your organization?
.98
YES
1
NO.
0
97
OTHER
(SPECIFY)
DON'T KNOW.
8.7
Do you have written systems for
maintaining confidentiality of ones
HIV status in your organization?
.98
YES.
1
NO.
0
97
OTHER
(SPECIFY)
DON'T KNOW.
.98
Self Assessment index
■
•
1
1
2
3
4
5
6
7
8
9
10
3
4
5
1
2
3
4
5
Level of awareness of the workplace policy on
HIV/AIDS?_____________________________
Ability to evolve workplace policy on
HIV/AIDS?_____________________________
Ability to stand-up against any stigmatizing
and discriminating behaviour
11
Ability to integrate S&D related activities in the
current programmes
12
Willingness to collaborate with organizations
who work against S&D
Ability to be non-judgmental about sex,
PLHIVs & other high risk groups
13
2
Understanding about S&D?________________
Ability to identify Stigmatizing behaviour?_____
Ability to identifying behaviour that
discriminatory?
______________________
Level of knowledge about modes of
transmission ___________________________
Openness to engage PLHIVs in day to day
activities?__________________________
Awareness level on rights of PLHIV?_________
Confidence & comfort to engage with FSW,
MSM & IDUs & PLHIVs?
ON BEHALF OF PROJECT STAND, I THANK YOU FOR YOUR WHOLEHEARTED
COOPERATION FOR THE INTERVIEW. NOW PLEASE LET US KNOW IF YOU WOULD
LIKE TO KNOW MORE ABOUT ANY SUBJECT, WE HAVE SO FAR DISCUSSED.
After clarifying all the queries of the respondent related to project
stand and various activities thank the respondent and conclude the
interview.
INTERVIEWER OBSERVATIONS
Meeting with:
Position:
.PH:
Baseline study on stigma and
discrimination-STAND Program
Interview Schedule for People living with HIV
INFORMED CONSENT
(The investigator shall explain in the following manner the purpose of the
interview and obtain the verbal informed consent from the respondent)
Namaskara,
My name
is
Management
Services,
part
a research investigator
I
work as
of
Catalyst
and
Group
are
for Catalyst
currently
supporting
INSA-Indi a an organizations in Bangalore working in Health Domain to promote
the individual capabilities of dealing with issues of concern.
This study is
a humble attempt to understand more about HIV Stigma.
The findings of this
study
agencies
would
STAND
Program
and
sensitivity and
help
help
unders tandi ng
the
associated
the
in
efforts
for
in
better
improving
the
situation through reducing stigma and address the issues of concern through
You have been carefully selected
evidenced informed programme and advocacy.
to
the
represent
friendly
advisor.
views
Your
and
responses
very
are
important for this study. I would like to interview you as part of the study.
The interview would take approximately 45 minutes to complete.
to
ask
opinions
you
few
a
about
questions
various
issues,
about
yourself.
Stigma
and
your
social
discrimination
I would like
relationships,
etc.
All
these
questions are found to be unavoidable in understanding the issues related to
PLHIV; please excuse me if any of the questions hurts your sentiments.
The
participation in this study is voluntary. There is no provision for monitory
compensation for attending the interview. We would very much appreciate your
participation
in
the
study.
Whatever information you provide will be kept
strictly confidential and your personal data will not be shared with other
persons. However you have the freedom to decide not to answer any particular
question, a set of questions or all the questions.
If you have any grievance
related to the interview or the study, you may inform (Mr Chandrashekar Gowda
Swasti;
Phone:
9342531009)
who would respond to it.
you like to ask me anything more about the study?
At this moment.
would
(Clarify all the queries
the respondent has). Now may I have your consent for the interview?
Respondent Refuses, Record Reason and other relevant data and end Interview
Respondent gives consent for the interview:
i
Signature
INTERVIEWER/DATA ENTRY INFORMATION
Study Number
District Code
District Name.
Date of Interview (DD/MM/YY)
Name of the Investigator
Place of Interview .
.....
Duration of interview in minutes (Fill after the interview is
completed)
..
Have you been interviewe.
n Bangalore
Yes
No
consent Status_________________________
Refused for the survey (Record verbatim below)
Agreed for the survey
Respondent not Eligible
2
3
Reason for refusal (Record Verbatim)
NON-RESPONSE DATA: [RECORD THE FOLLOWING INFORMATION FOR NON-RESPONSE]
AGECompletion Status_____________________________________ _____
____
Completed Interview
1
Did not complete interview
2
Did not sell sex in the last one month
3
Respondent Refused
4
Respondent already taken part in the survey elsewhere
Language of the interview
..........
5
Supervisor Details (To be filled in by supervisor)
Name
................
Code
Date of Scrutinizing the interview
schedule (DD/MM/YY)
Signature of supervisor
Data
Entry
•a Eni
____________________________________
Name of Data Entry Operator (DEO)
Date of Data Entry (DD/MM/YY)
Record No
Signature of the DEO
y xipGX*visojr
——
—
.
.......
_
■
■
Name.
Date of data entry checked (DD/MM/YY)
Signature.
•■
___
■■
■
.
■
________
__
.
1. Demographic Profile
No.
_______________QUESTIONS
How old are you?
1.1
What is the highest level of
schooling you have completed?
CODING CATEGORIES
SKIP
AGE IN COMPLETED YEARS... .Ll_l
DON'T KNOW
NO ANSWER
98
99
NO FORMAL SCHOOLING.....
.0
SCHOOLING STANDARD.
1.2
What is your religion?
1.3
What is your caste group?
1.4
What is your current marital status?
1.5
Which is your native
village/city/district/state?
1.6
RECORD NAME OF CITY/VILLAGE; DISTRICT
NAME AND STATE NAME
Where do you currently reside?
1.7
RECORD NAME OF CITY/VILLAGE; DISTRICT
NAME
Since how long are you living in the
current residence?
GRADUATE.
OTHER
13
97
(SPECIFY)
DON'T KNOW
NO ANSWER
98
99
HINDU
MUSLIM
CHRISTIAN
OTHER
1
2
3
97
(SPECIFY)
DON'T KNOW
NO ANSWER
98
99
SC/ST.
OBC
OTHER
.1
. .2
97
(SPECIFY)
DON'T KNOW
NO ANSWER
98
99
UNMARRIED.
MARRIED....
DESERTED.
DIVORCED/ SE PARATED.
. .1
. . .2
. . .3
.4
WIDOWED.
OTHER
. . .5
97
(SPECIFY)
NO ANSWER.
. .99
CITY/VILLAGE.
DISTRICT.
STATE.
DON' T KNOW.
NO ANSWER
.98
.99
CITY/VILLAGE.
DISTRICT
STATE.
DON'T KNOW.
NO ANSWER.
.98
.99
YEARS.
MONTHS.
1.8
DAYS.
1.9
Since how long do you know your HIV
status?
EARS.
MONTHS.
DAYS.
Is any body living with HIV in your
family other than you?
1.10
Yes...
No
DON'T KNOW.
NO ANSWER.
. . 1
0
.98
.99
2. Awareness of Stigma
No.
2.1
QUESTIONS
CODING CATEGORIES
What is AIDS?
CORRECT ANSWER..
WRONG ANSWER
DON'T KNOW.
NO ANSWER
.. 1
CORRECT ANSWER.
WRONG ANSWER
DON'T KNOW.
. . 1
CIRCLE CORRECT ANSWER (1)IF THE RESPONDENT
SAYS IT IS THE TERMINAL STAGE OF HIV
INFECTION
What is HIV?
2.2
2.3
CIRCLE CORRECT ANSWER (1) IF THE
RESPONDENT SAYS IT IS A MICRO
ORGANISM/VIRUS
0
.98
.99
0
.98
NO ANSWER.
.99
Can you know whether a person has HIV
(the virus that causes infection) by
looking at him/her?
YES.
NO.
DON'T KNOW.
NO ANSWER.
. . 1
0
.98
.99
Is HIV infection curable?
YES.
NO.
DON' T KNOW.
NO ANSWER.
. . 1
0
.98
YES.
NO...
OTHER
. . 1
0
97
2.4
Will a person change in any way once
he/she has become HIV positive?
2.5
SKIP
(SPECIFY IF ANY FOR EXAMPLE, PHYSICAL,
PSYCHOLOGICAL, SOCIAL, ECONOMICAL)
Are there any differences between HIV
infected and not infected person?
2.6
.99
(SPECIFY)
DON'T KNOW.
NO ANSWER.
.98
.99
YES.
NO.
DON'T KNOW.
OTHER
. . 1
0
.98
97
(SPECIFY)
NO ANSWER.
Is HIV like any other disease or not?
(EXPLAIN HIV IS JUST A DISEASE OR MORE
2.7
.99
YES.
1
NO.
0
97
OTHER
(SPECIFY)
THAN THAT?)
NO ANSWER.
.98
.99
NEED TO TREAT EQUALLY
1
DON'T KNOW.
2.8
Can a HIV positive person be treated
like any other or needs special care
or attention?
NEED SPECIAL CARE.
. 2
DON'T KNOW.
.98
.99
. .97
NO ANSWER..
Others.
What do you mean by stigma?
Low perception towards
self
1
Thinking badly about PLHIV .
2
OTHER
2.9
97
(SPECIFY)
Did you ever see a stigmatizing
situation?
DON' T KNOW.
NO ANSWER..
.98
.99
YES.
NO.
OTHER
. . 1
2.10
0
97
(SPECIFY)
DON'T KNOW.
NO ANSWER.
How Stigma is related to
Discrimination?
If Hospital personnel stigmatize or
discriminate because of your HIV
status will you visit that hospital
1
STIGMA LEADS TO DISCRIMINATION...
2
YES.
NO...
OTHER
your family/neighbour started
discriminating against you?
4
.98
.99
.. 1
0
97
DON' T KNOW.
NO ANSWER.
. 98
.99
YES.
NO.
OTHER
. . 1
0
97
(SPECIFY)
Is there any change in your
interaction with others after you
became HIV Positive?
DON'T KNOW.
NO ANSWER..
.98
. 99
YES.
NO.
OTHER
. . 1
0
97
2.14
(SPECIFY)
Do you feel the need of working
2.15
3
(SPECIFY)
again?
Have you changed in any way after
2.13
BOTH ARE SAME.
NO RELATION B/W S&D.
YES, THERE IS A RELATION.
DON'T KNOW.
NO ANSWER.
2.11
2.12
.98
.99
DON'T KNOW.
NO ANSWER..
. 98
. 99
YES.
NO
. . 1
0
towards reducing stigma and
OTHER
97
discrimination?
(SPECIFY)
DON'T KNOW.
. .....
NO ANSWER.
.98
.99
YES...
N0....„.
OTHER
. . 1
0
97
Do you know anyone working towards
reducing S&D?
2.16
(SPECIFY)
Can you name an organization/person
who is working towards reducing HIV
stigma?
DON'T KNOW.
NO ANSWER...
. 98
.99
YES.
NO.
OTHER
. . 1
0
97
2.17
(SPECIFY)
DON'T KNOW.
NO ANSWER.
.98
. 99
3. Knowledge of transmission and disease
INAPPROPRIATE FEAR OF CONTAGION
No.
Questions and Filters
3.1
Please tell me if you have a
lot of fear of becoming
infected with HIV.
[Read the list one at a time
and answer if there is High
probability, some probability,
no probability and Don't know.]
Coding Categories
HUG. .
H. P
S.P
N.P
D.K
1
2
3
9
a. Hug a person with HIV
b. Share the same glass to
drink with a person with HIV
DRINKING GLASS.
1
2
3
9
c. Work next to a person with
HIV
WORK NEXT TO.
1
2
3
9
d. Care for a person with HIV
CARE FOR.
1
2
3
9
HAVE SEX WITHOUT A CONDOM. 1
2
3
9
e. Have sex without a condom
with a person with HIV
f. Share needles with a person
SHARE NEEDLES WITH....1
2
3
with HIV_________
Read each of the following, please tell me how likely you
think it is that a person could get HIV and AIDS.
3.2
3.3
3.4
People with HIV should still be
allowed to get married, as long as
both partners know about it.
YES.
NO.
OTHER
(SPECIFY)
DON'T KNOW.
NO ANSWER.
... .99
YES.
NO.
OTHER
. . 1
0
97
HIV-positive women should not get
pregnant.
HIV spreads due to immoral behavior.
(Having more than one sexual
partner.)
. . 1
.. 0
97
.... 98
(SPECIFY)
DON' T KNOW.
NO ANSWER.
.98
.99
YES.
NO....
OTHER
.. 1
. . 0
97
(SPECIFY)
9
3.5
3.6
The HIV virus is found within saliva.
Therefore, it is possible to get HIV
from kissing.
DON'T KNOW..
NO ANSWER.
.98
.99
YES.
NO.
OTHERS
1
. . 0
97
(SPECIFY)
DON'T KNOW.
NO ANSWER.
.98
99
YES.
NO.
OTHER
. . 1
0
97
"Having sex with a virgin can cure
HIV/AIDS in a person."
3.7
(SPECIFY)
DON'T KNOW.
NO ANSWER.
98
.99
YES.
NO.
OTHER
1
0
97
A person can not get HIV from having
sex just one time
(SPECIFY)
DON'T KNOW.
3.8
If a person found out that a coworker has HIV, would he/she be
willing to work with him/her?
NO ANSWER.
.98
.99
YES.
NO.
OTHER
.. 1
0
97
(SPECIFY)
DON' T KNOW.
NO ANSWER.
.98
.99
YES..
NO.
1
.. . 0
OTHER
3.9
3.10
3.11
Patients with HIV should be kept at a
distance from other patients.
Clothes and linen used by HIV
patients should be disposed of or
burned.
Patients should be tested for HIV
before any surgery.
97
(SPECIFY)
DON'T KNOW.
NO ANSWER.
.98
. 99
YES.
NO...
OTHER
. . 1
0
97
(SPECIFY)
DON' T KNOW.
NO ANSWER.
.98
.99
YES.
NO...
OTHER
.. 1
0
97
(SPECIFY)
DON' T KNOW.
NO ANSWER.
.98
.99
very
likely
some
what
like
iy
somewha
t
unlikel
y
very
unlikely
3.12
Are people agreeing to share a drink
out of the same glass with someone
who has HIV?
1
0
98
99
3.13
How about by using public toilets?
1
0
98
99
3.14
Are people comfortable from being
coughed on or sneezed on by someone
who has HIV?
1
0
98
99
3.
Values
Delink Sin-Sex and HIV
(i.e. associations with shame, blame and judgment)
[I4.1
’
nlt.„
.
~
WB'
•
Indicate your agreement or
disagreement with each
statement:
Agree
Partially Agree/
Not Sure
Disagree
[READ THE LIST ONE AT A TIME]
a.
People with HIV should be
ashamed of themselves.
b. A person with HIV must have
done something wrong.
c. People who got HIV through
sex or drug use have got
what they deserve.
d. AIDS is a punishment from
God.
Bad behavior.
.
1
2
3
Ashamed..
.1
2
3
Wrong....
.1
2
3
2
3
2
3
Deserve.
.1
God
1
COMPOSED STIGMA
4.2
[SPECIFIC VULNERABLE GROUPS CAN
BE SUBSTITUTED DEPENDING ON
LOCAL CONTEXTS]
a.
It is the female sex workers
who spread HIV.
b. Women get HIV because they
are female sex workers.
c. Homosexuality is the cause
of HIV.
d. Injection drug users should
be blamed for spreading HIV.
e.
4.3
Men who have sex with other
men should be put in jail
for spreading HIV.
Agree
Sex Workers.
Partially Agree/
Not Sure
....1
Prostitutes
Homosexuality
1
1
Injection Drugs
1
Men Sex Men...
Only those who are infected with HIV
by medical needles or blood in a
hospital
deserve to receive care
and treatment.
YES.
3
2
3
2
3
2
3
2
3
0
OTHER
NO ANSWER.
2
1
NO...
DON' T KNOW
Disagree
97
(SPECIFY)
....
.98
.99
5.Enacted stigma or discrimination
(i.e. actions those are typically associated with discrimination)
ENACTED STIGMA / DISCRIMINATION
'
___
•
5.1
■
■.
■
••
■
■
■■
'■
-
.
c. Been verbally abused or
teased.
d. Been physically assaulted.
e. Been fired from work.
f. Had property taken away?
g- Been denied health services.
Did you come across any stigmatizing
situation?
5.2
Did you ever raise voice against
stigma?
Are you interested to be part of the
stigma reduction activities?
Can PLHIV access the services in
public hospitals like any one else?
Y
N
DK
Excluded
1
2
9
Abandoned... .
1
2
9
Abused/Teased..
1
2
9
Assaulted.
1
2
9
Fired
1
2
9
Property Taken.
1
2
9
Denied Health Services
1
2
9
YES.
If Yes, specify.
NO
.......
DON' T KNOW.
NO ANSWER.
. . 1
YES.
NO.
DON'T KNOW.
NO ANSWER
YES
NO.
. . 1
. . 0
....98
DON'T KNOW...
NO ANSWER.
.... 98
.99
0
. 98
.99
.... 99
. . 1
. . 0
YES.
NO...
OTHER
1
0
97
(SPECIFY)
5.5
DON'T KNOW.
PLHIV are eligible to enjoy all human
5.6
____________
Have you personally experienced
or know someone who has had the
following happen to him/her in
the past 12 months because of
having HIV or AIDS?
b. Been abandoned by
spouse/partner.
5.4
■
________ _ ________ __________________________ :___ _
[read the list one at a time]
a. Been excluded from a social
gathering.
5.3
■
rights and services?
NO ANSWER.
.98
.99
YES.
NO.
.. 1
0
OTHER
97
(SPECIFY)*
DON'T KNOW.
NO ANSWER..
Generally how people behave with HIV
positive people?
5.7
1
. 2
.98
97
.99
Fear, ignorance, and misconceptions
YES.
have resulted in stigmatization of
NO.
OTHER
. . 1
. . 0
97
associated with them.
Have you been denied religious rites
(marriage, communion,
burial, prayers)/ Not
allowed to go to church/mosque etc
5.9
(SPECIFY)
DON'T KNOW.
NO ANSWER..
.98
.99
YES.
. . 1
0
97
NO
OTHER
(SPECIFY)
DON'T KNOW.... .....
NO ANSWER.
Have you lost housing or not been
able to rent housing because of HIV
status?
5.10
5.11
KEEP DISTANCE.
AS LIKE OTHERS.
DON'T KNOW.
OTHER
(SPECIFY)
NO ANSWER.
people living with HIV or those
5.8
.98
.99
Have you have been given inadequate
quality health services,
for example: being passed from
provider to provider, not given
medicines, denied treatment
because they were known, or
Suspected of having HIV or AIDS?
Have you lost respect/stending within
the family and/or community
YES.
98
... .99
NO..
OTHER
. . 1
0
97
(SPECIFY)
DON'T KNOW......
.98
NO ANSWER.
.99
YES.
NO.
OTHER
. . 1
0
97
(SPECIFY)
DON'T KNOW.
NO ANSWER.
.98
...99
YES.
1
NO.
OTHER
0
97
5.12
(SPECIFY)
DON'T KNOW.
NO ANSWER..
.98
.99
People
6.
living
with
infection
HIV
perceived as spreaders of infection
{Associations
of
them
spreading
infection
instead
of
being
agents
of
prevention}
People with AIDS should be legally
separated from others to protect the
public health?
6.1
STRONGLY AGREE.
AGREE
DISAGREE
1
2
3
STRONGLY DISAGREE
DON'T KNOW.
NO ANSWER..
The names of people with AIDS should
be made public so that others can
avoid them?"
6.2
Women who are pregnant should be
required to be tested for the AIDS
virus in order to protect the health
of their unborn baby?
6.3
4
.98
.99
STRONGLY AGREE.
AGREE
DISAGREE
STRONGLY DISAGREE
DON'T KNOW.
NO ANSWER.
1
2
3
4
. 98
.99
STRONGLY AGREE.
AGREE
DISAGREE
1
2
3
STRONGLY DISAGREE
DON'T KNOW...
NO ANSWER.
Most people with HIV don't care if
they infect other people with the
HIV?"
6.4
4
.98
.99
STRONGLY AGREE.
AGREE
DISAGREE
1
2
3
STRONGLY DISAGREE ....
DON'T KNOW.
NO ANSWER.
People living with HIV should not
have sexual desires, because they may
spread HIV to others.
6.5
People living with HIV should not
visit hospitals frequently, because
there are chances to spread HIV to
others
6.6
4
.98
.99
STRONGLY AGREE
AGREE
DISAGREE
STRONGLY DISAGREE
1
2
3
4
DON'T KNOW.
.98
NO ANSWER.
.99
STRONGLY AGREE.
AGREE
DISAGREE
STRONGLY DISAGREE
DON' T KNOW.
NO ANSWER.
1
2
3
4
.98
.99
If hospital staff is infected with
HIV she/he must quit the job because
while treating the patients HIV may
be tran smi tted.
1
STRONGLY AGREE
AGREE
2
DISAGREE
6.7
3
STRONGLY DISAGREE
4
DON' T KNOW.
NO ANSWER.
7.
Internalized
stigma
. 98
.99
with
People
Living with HIV?
In the areas of your life, does any
one know that you have HIV?
YES.
NO.
OTHER
1
0
97
(SPECIFY)
7.1
Do you feel guilty because you have
HIV?
DON'T KNOW.
NO ANSWER.
.98
.99
YES.
NO.
OTHER
1
0
97
(SPECIFY)
7.2
DON'T KNOW.
.98
.99
NO ANSWER.
Do People's attitudes about HIV make
you feel worse about yourself?
7.3
STRONGLY DISAGREE.
DON'T KNOW.
NO ANSWER..
Do you think, telling someone you
have HIV is risky?
7.4
Do you think People with HIV lose
their jobs when their employers find
out?
7.5
STRONGLY AGREE.
1
AGREE.
.2
DISAGREE
.3
4
.98
. 99
STRONGLY AGREE.
1
AGREE.
.2
DISAGREE
.3
STRONGLY DISAGREE. 4
DON'T KNOW.
NO ANSWER.
STRONGLY AGREE.
AGREE.
.2
.3
STRONGLY DISAGREE.
DON'T KNOW..
.98
.99
1
DISAGREE
NO ANSWER.
4
.98
.99
Do you work hard to keep your HIV
status a secret?
7.6
Do you feel you are not as good a
person as others because you have
HIV?
7.7
STRONGLY AGREE.
1
AGREE.
.2
DISAGREE
.3
STRONGLY DISAGREE. 4
DON' T KNOW.
NO ANSWER..
STRONGLY AGREE.
1
AGREE.
.2
DISAGREE
.3
STRONGLY DISAGREE.
DON'T KNOW.
NO ANSWER.
Are People with HIV treated like
outcasts?
7.8
.98
. 99
4
.98
.99
STRONGLY AGREE. .1
AGREE
.2
DISAGREE
.3
STRONGLY DISAGREE.
DON' T KNOW.
4
.98
NO ANSWER.
Most people believe that a person who
has
HIV is dirty?
7.9
Are Most people with HIV rejected
when others find out?
7.10
,„.99
STRONGLY AGREE.
1
AGREE.
.2
DISAGREE .
.3
STRONGLY DISAGREE 4
DON' T KNOW.
NO ANSWER.
STRONGLY AGREE.
1
AGREE.
.2
DISAGREE
.3
STRONGLY DISAGREE.
DON' T KNOW.
4
.98
.99
NO ANSWER.
Have you been hurt by how people
reacted to learning you have HIV?
YES.
. . 1
0
97
NO.
OTHER
(SPECIFY)
7.11
DON'T KNOW.
NO ANSWER.
Do you worry that people who know you
have HIV will tell others?
.98
.99
STRONGLY AGREE.
AGREE.
DISAGREE
1
.2
.3
STRONGLY DISAGREE.
DON'T KNOW.
NO ANSWER.
7.12
Do you think People don’t want you
7.13
.98
.99
around their children once they know
you have HIV?
4
. 98
.99
STRONGLY AGREE.
1
AGREE.
.2
DISAGREE
.3
STRONGLY DISAGREE
po't
4
DON'T KNOW.
Some people act as though it's your
fault you have HIV?
7.14
Have you stopped socializing with
some people because of their
reactions to you having HIV?
NO ANSWER..
.98
. 99
STRONGLY AGREE. ...1
AGREE.
.2
DISAGREE
.3
STRONGLY DISAGREE. 4
DON'T KNOW.
NO ANSWER.
.98
.99
YES...
NO.
. . 1
0
97
OTHER
7.15
(SPECIFY)
DON'T KNOW.
NO ANSWER.
8.
Questions to friendly advisor
Are you interested to work with
PLHIV?
8.1
Yes..u.. 1
No......
2
Don't Know.
Others. .97
Do you have the skills to motivate
PLHIV?
8.2
8.3
Would you help a PLHIV being
discriminated or would you turn a
blind eye to it?
Yes. .1
No.
. .2
Don't Know.
Others. .97
Yes
.1
No.
. .2
Don't Know.
Others.
8.4
Would you be able to demonstrate your
ability for problem solving in your
life on being HIV to PLHIV?
AS a PLHIV, do other PLHIV in your
group know your identity?
3
3
3
.97
Yes. .1
No...
. .2
Don't Know.
Others.
8.5
..... 98
.99
3
.97
Yes.
.1
No
.2
Don't Know...
Others
3
97
Yes
8.6
Can you share your feelings with
other PLHIV in your group?
Do you have faith in the linkages and
networks working for PLHIV?
8.7
.1
No...
. .2
Don't Know.
Others. . 97
Yes. .1
No.
. .2
Don't Know.
Others. .97
3
3
ON BEHALF OF PROJECT STAND, I THANK YOU FOR YOUR WHOLEHEARTED
COOPERATION FOR THE INTERVIEW.
WOULD
LIKE
TO
KNOW MORE
ABOUT
NOW PLEASE LET ME KNOW IF YOU
ANY
SUBJECT
WE
HAVE
SO
F2kR
DISCUSSED.
AFTER CLARIFYING ALL THE QUERIES OF THE RESPONDENT RELATED TO
PROJECT STAND AND VARIOUS ACTIVITIES THANK THE RESPONDENT AND
CONCLUDE THE INTERVIEW.
INTERVIEWER OBSERVATIONS
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