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HIV Stigma and Discrimination

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					HIV/AIDS related Stigma
Understanding it, measuring it, and testing the impact of programmatic responses
Julie Pulerwitz, ScD Kerry MacQuarrie Horizons/PATH ICRW Mini University, October 14, 2005

Conceptualizing stigma
 Difficult, since complex and may seem
amorphous

 Stigma is a social process, not just an individual
one

 Reasons for stigma vary:
 fear of contagion and death  prejudice against already stigmatized groups
(compounded stigma)  social norms about ―bad‖ behaviors

Measuring stigma
 Indictors for felt stigma & enacted stigma
(i.e. discrimination) differ

 Different measures for varied settings
needed  health facility, community-based, workplace

 Common problems with validity
 ―Not willing to touch PLHA‖ due to fear of
transmission or pariah status?

S & D interagency working group
 Since 2002, various institutions meeting to
discuss stigma and discrimination, especially measurement  Steering committee: ICRW, Horizons, POLICY,
MEASURE, USAID

 Recommendations in USAID ‗Expanded Guide‘  Field-testing of indicators  Coordination of findings

Highlights from 2 Horizons Intervention Studies

HIV prevention and stigma reduction among truckers in Brazil Stigma reduction among healthcare workers in India

Truckers in Brazil


Main objectives:
 Assess how HIV-related stigma is manifest for truckers crossing the southern Brazilian borders  OR to reduce stigma and increase HIV/STI prevention and treatment among truckers



Main partners:


Horizons Program & Population Council/Brazil, USAID, Brazilian Ministry of Health, GoodYear Tires

Study design
 

Cross-sectional design Truckers recruited at two customs stations in tri-country borders in Brazil
Systematic sample – invitations on entry



 

1,775 truckers completed baseline interview Intervention implemented 2003 – 4; thousands of truckers reached
Post-intervention data collection ongoing



Final stigma measure
 

17 item Stigma Index

Four domains
   

Discomfort with casual contact Blame towards PLHA Fear of stigma from others Willingness to assist PLHA



Overall internal consistency reliability (alpha = .77)

Selected stigma index items
% Agree
Truckers are to blame for spreading HIV/AIDS. AIDS is a punishment for bad behavior. I would feel comfortable traveling with someone who HIV/AIDS in my truck. If I had AIDS, I would be fired from my work.

26 28 58 63 35 33 46

57 80 100

Brazilian Non-Brazilian

0

20

40

60

Stigma index by HIV-related knowledge*
80 70 60 50 40 30 20 10 0
Knowledge Index

74
High knowledge Low knowledge

26

*p < 0.001 - Chi-square test

Resulting intervention activities
 BCC campaign  Outreach
 Clinic at the border
 STI treatment  VCT

Hospitals in India


Main objectives:




Explore extent of HIV-related stigma and discrimination among physicians, nurses, and ward staff Develop and test the impact of S & D reduction activities in the hospital setting
Horizons, SHARAN, Institute for Economic Growth, NACO



Main partners:


Study design



Formative
 HCWs (35), PLHA and caregivers (24)

Baseline and Post-intervention measures
   Survey (884 HCWs both pre and post) Observations of staff practices Interviews with PLHA and key informants



Intervention in 3 New Delhi hospitals

Final stigma measure
 

21 item Stigma Index Domains of items


Discomfort with casual contact


E.g., Lack of willingness to share a meal
Men who get AIDS get what they deserve. Patients who test positive have a right to decide if relatives are informed.



Blame towards PLHA




Lack of respect for PLHA rights




Overall internal consistency reliability (alpha = .74)

Intervention activities


Development and implementation of:
 

Hospital-specific activity plans Self-assessment checklist for medical institutions to become ―PLHA-friendly‖ IEC materials on infection control and PEP Interactive training manual for sensitizing HCWs on HIV/AIDS issues

 

Discriminatory practices and stigma scores*
Reported practices:
HCW avoids going near PLHA patient
24.4 21.5

HCW tries not to touch PLHA patient

25.2 21.5

Yes No

HCW shares status of PLHA patient with all hospital staff

22.3 15.3

0

5

10

15

20

25

30

Mean stigma score of all HCWs at baseline; all *p < .05

Change in stigma index (n = 884)*
Percent of Health-care Workers who disagree with the following statements:
Need for consent exaggerated HIV/AIDS spreads due to immoral behavior Men who get HIV get what they deserve Patients with HIV should be kept at a distance

41 68 28 57 58 63 43 57

Baseline Endline

0

20

40

60

80

*16 out of 21 items p < .05

Stigma index by type of HCW
Low 80 70 60 50 40 30 20 10 0
Baseline (N=134) Endline (N=135) Baseline (N=375) Endline (N=375) Baseline (N=375) Endline (N=375)
6.1 1.5 0.7 0.3 1.3 49.3 49.3 44 38.1 35.6 26.1 15.7 8.5 67.7 63.7 55.7 60.5

Moderate

High
75.7

DOCTORS

NURSES

WARD STAFF

Highlights from 2 ICRW Intervention Studies

Community-based HIV stigma reduction in Tanzania Stigma reduction in media in Vietnam

Tanzania Community Intervention


Objectives




Evaluate the effects of Kimara Peers‘ intervention on stigma in the community Develop and test stigma indicators ICRW, Kimara Peers, Muhimbili University College of Health Sciences ICRW, Synergy Project, Tulane University USAID, Synergy Project, Horizons, FHI



Partners


 

Study Design
Pre/post survey with 2 rounds of qualitative data collection Baseline survey with 3 Populations

  

Community (n=978) Health providers (n=100) PLHA (n=218)
Fear-driven stigma Value-driven stigma Enacted stigma Disclosure



4 Domains
  



Intervention Design


Improved Kimara programs





Capacity building of Kimara staff using antistigma toolkit Action planning for adjustments to services Group counseling for PLHA on self-stigma & combating stigma



Community action plans with Balozi leaders

Anti-Stigma Toolkit
Based on earlier qualitative research (AED/Change) 125 exercises address causes & forms

 

Value- & fear-driven stigma Interpersonal & institutional stigma

Designed for use by CBOs, PLHA groups, community leaders Results in an Action Plan


Levels of Stigma
70 60 50 40 29.8 30 20 10 0 Stigma Observed by Health Providers Stigma Experienced by PLHA 59 56 Stigma Observed by Community

Percent

Gender Differences in Stigma
Experienced Stigma in the Last Year
(n=218)
No longer visited/visited less Excluded from social gathering Abandoned/sent aw ay by family Abandoned by spouse Threatened w ith violence Isolated in the household Physically assaulted Gossiped about Teased, insulted, sw orn at Visitors increased to check out/voyeurism Lost respect/standing in the community Denied religious rites/services Lost customers or job Lost housing/could not rent Had property taken aw ay Given poorer quality health services Denied promotion or training

Women Men 5% 10% 15% 20% 25% 30% 35% 40% 45%

0%

Indications of Effectiveness
Kimara staff sought for sympathy and advice— ‘People are saying that this is a more effective therapy than going to hospital’. Balozi leaders—‗Educating others on S&D is no longer a problem to me. This is because of the training I received on S&D.‘ More clients for Kimara VCT and Group Counseling More community members who can identify stigma Decreases in name calling, gossip of ―patient‘s‖ wellbeing, and obstacles to credit schemes & employment benefits


Challenging HIV Stigma in Vietnam‘s Media


Main Objectives




Phase 1: Assess the causes, manifestations, & consequences of HIV stigma in Vietnam (2002-2004) Phase 2: Intervene to change the approach to IEC, news, and information about HIV/AIDS through the media (2004-2005) ICRW, Institute for Social Development Studies, USAID & CHANGE Project/AED



Partners


Key Research Findings
HIV/AIDS tied to ―social evils‖ Media central to how PLHA are perceived & stigma constructed in Vietnam Central Commission on Ideology & Culture keen to foster more stigmaaware media


Intervention Design
Adaptation of the anti-stigma toolkit to Vietnam ‗Color of Love‘ Art Exhibition of two artists living with HIV Sensitization & strategy development workshops with:







National Commission of Ideology & Culture Provincial Commissions of Ideology & Culture VTV editors, journalists, & others in TV and newspaper programming

Intervention Outcomes
Toolkit adapted with segments on injection drug use & ―social evils‖ National CIC & media leaders exhibited shift in perspectives 67 provincial CIC staff found training important and useful >10 new TV program segments developed and aired, numerous newspaper articles appearing Factsheets & IEC posters developed


Media Assessment
Before
Little about stigma reported by media

After
More stories about stigma

Links with social evils: PLHA as drug users, sex workers, those who behave badly PLHA portrayed as sick, useless & hopeless

Efforts to de-link HIV and social evils

More positive stories about people living with HIV remaining and/or becoming active in the community

Posters /stories used stigmatizing words Fewer fear-based messages/more and dark, threatening, fear-based positive images images Fear and avoidance propagated by media messages Stories of leaders working with/visiting PLHA; calls to support PLHA

Concluding Thoughts


Stigma can be addressed by interventions


Different interventions for S&D, institutional or interpersonal Truckers, Hospitals, Community, Media Distinguish 4 domains to capture complexity



Many entry points




Stigma is measurable


Different issues important for different populations



E.g. Men versus women

Future Directions for Horizons & ICRW


Kimara Peers‘ evaluation & indicators testing—Tanzania


ICRW, Horizons, FHI, USAID ICRW, Horizons, USAID



Reducing stigma in healthcare settings—Vietnam




Stigma in the context of ARVs—Tanzania and Botswana


ICRW, Gates Foundation Horizons & FHI in Kenya, Horizons & MOH in Thailand Horizons, AMKENI



Stigma and adherence to ARVs— Kenya and Thailand




Stigma in the context of PMTCT— Kenya


Resources on S&D




 

Horizons conceptual S & D framework, intervention directions Horizons review of 21 interventions explicitly attempting to decrease AIDS stigma ICRW/AED anti-stigma toolkit ICRW et al recommendations for measuring HIV stigma


				
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