Scaling up stigma?The Effect of ARV provision on stigma and VCT

uptake

Maria Roura, Mark Urassa, Joanna Busza, Benjamin Nhandi, Doris Mbata, Alison Wringe, Ray Nsigaye, Basia Zaba

TAZAMA / NACP seminar

Dar-es-Salaam, September 19th 2008

OverviewOverview

BackgroundBackground MethodsMethods FindingsFindings ConclusionsConclusions Policy recommendationsPolicy recommendations

VCT uptake

HIV treatment

Reduced stigma

HIV PREVENTION (safer behaviours)

Maximised Synergies

BackgroundBackground

BackgroundBackground

VCT Uptake-Kisesa trade centerAug 2005-June 2007

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Methods - Methods - data collectiondata collection

Trade center Rural areas TOTAL

Community leaders 33 58 91Village leaders 4 6 10

Ten-cell & Sub-village leaders 18 40 58Faith leaders 3 4 7

Village advisers (“maarufu”) 6 6 12Traditional Healers 2 2 4

PLHA 39 38 77Male 20 18 38

Female 19 20 39

Health providers 9 7 16Facility based 7 4 11

Community based 2 3 5TOTAL 184

ENACTED ENACTED (discrimination)(discrimination) EXPECTED (anticipated)EXPECTED (anticipated) INTERNALISED INTERNALISED (self-stigma)(self-stigma)

Types of stigmaTypes of stigma

Sources of stigmaSources of stigma BURDEN BURDEN BLAMEBLAME NEW SOURCES related to ARVsNEW SOURCES related to ARVs

Emerging topicsEmerging topics

Preliminary coding

framework

Ongoing process

NORMALISATIONNORMALISATION COLLECTIVE DENIAL COLLECTIVE DENIAL ““OTHERING” – blaming othersOTHERING” – blaming others

Methods - Methods - data analysisdata analysis

Back to productive activitiesBack to productive activities

Not being ‘the only one’Not being ‘the only one’

Increased social support Increased social support

ART contributes to HIV normalisationART contributes to HIV normalisation(ART users views)(ART users views)

REDUCED SELF-REDUCED SELF-STIGMASTIGMA

Positive impact on VCT Positive impact on VCT uptakeuptake

Findings IFindings I

“It has become just like fever, it is for everybody, so I feel good” (ART user, trade centre)

“I am not the only one…it takes even members of parliament” (male, trade centre)

Towards a normalisation of HIVTowards a normalisation of HIV

“Because of my health, I have taken four guys to the VCT centre” (ART user, trade centre)

Findings IFindings I

Pervasive blamingPervasive blaming(Community views)(Community views)

Wide diversity of attitudesWide diversity of attitudes

Exemptions from blame: accidental infection, Exemptions from blame: accidental infection, powerlessness & extreme povertypowerlessness & extreme poverty

HIV = MORAL CHOICEHIV = MORAL CHOICE

ANTICIPATED ANTICIPATED STIGMASTIGMA

Negative impact on VCT Negative impact on VCT uptake uptake

Findings IIFindings II

“…maybe s/he was very promiscuous. Now s/he has been caught” (VL2, semi rural)

Pervasive blaming Pervasive blaming

“A person fears a lot to be isolated by the community in case s/he is found with HIV” (group activity, ART users: males remote rural areas)

Findings IIFindings II

NewNew sources of stigma related to sources of stigma related to ARVsARVs(Village Leaders views)(Village Leaders views)

Findings IIIFindings III

ART users perceived to ‘spread the disease’

‘Moral outrage’

‘‘SolutionsSolutions’’ mentioned mentioned by VLsby VLs::

Marking ART users with a sign, isolation Marking ART users with a sign, isolation camps, impotencecamps, impotence

“…when he will see that his health is good then he will continue spreading infections…” (VL10, remote rural)

“Let him take these medicines and become fat but he should be made impotent “ (VL 1, semi rural)

NewNew sources of stigma related to sources of stigma related to ARVsARVs

Findings IIIFindings III

“ “Othering” and collective denialOthering” and collective denial

Attribution of AIDS symptoms to witchcraft Attribution of AIDS symptoms to witchcraft Perceived advantages of ‘Kondela’:Perceived advantages of ‘Kondela’:

– Keeps hope in a definitive traditional cureKeeps hope in a definitive traditional cure– Turns ‘guilty’ into ‘victims’ : ‘cures’ stigmaTurns ‘guilty’ into ‘victims’ : ‘cures’ stigma– Perpetuates uncertainty and ambiguity when Perpetuates uncertainty and ambiguity when

HIV test is not performedHIV test is not performed

COLLECTIVE DENIAL COLLECTIVE DENIAL Negative impact on VCT Negative impact on VCT

uptakeuptake

Findings IVFindings IV

““Othering” and collective denialOthering” and collective denial

“Their relationship with him/her is good because they believe that s/he is bewitched… If they really knew that this person has AIDS it’s tough in the village. S/he is not taken care of. They say: ‘s/he wanted it, s/he liked it…s/he got it through sex”.

(Maarafu 7, semi rural)

Findings IVFindings IV

ARV provisionPLHA live longer, regain vigour and healthy appearance

- BURDEN-related stigma decreases - SOCIAL SUPPORT from closest social networks increases (families, CTC, HBC providers).

Reduced self- stigma

NORMALISATION

VCT uptake

- BLAME related stigma persists- NEW SOURCES emerge: FEAR sexual transmission exacerbated + moral outrage

Pervasive anticipated stigma

COLLECTIVE DENIAL

+ sensit. Campaigns + attrib. of HIV to WC

-+

DiscussionDiscussion

ConclusionConclusion

The persistence of blaming attitudes The persistence of blaming attitudes and emergence of and emergence of new sources of new sources of stigma directly related to ARV stigma directly related to ARV provision provision feed into high levels of HIV feed into high levels of HIV denial and counter-balance the denial and counter-balance the potential positive impact of HIV potential positive impact of HIV normalization on VCT uptake normalization on VCT uptake

NORMALISATION

NATIONAL LEVELTesting of government leaders

(Tanzania – Kikwete campaign)

LOCAL LEVEL

- VCT local leaders (VEO, Blz, Vt, ‘Maarufu’,THs)

- Involving FLs in VCT promotion

- Strengthening of VACs (training +budget)

-Increased visibility + participation ART users

-Raising awareness detrm. effects of stigmaon VCT, ART and HIV transmission

NATIONAL LEVELCriminalization of HIV

(many European and African countries)

STIGMA SCALE-UP

LOCAL LEVEL

- Misinformation over HIV transmission risks (recently infected vs ART users) FEAR - Moral exploitation of HIV to control behaviours BLAME

- Highly visible food support only to PLHA MORAL OUTRAGE

Policy implicationsPolicy implicationsHIV Normalisation or scaling-up stigma?HIV Normalisation or scaling-up stigma?

Policy recommendationsPolicy recommendations

• Multilevel interventions emphasising community Multilevel interventions emphasising community levellevel

• Wide coverage of training for MAC at village levelWide coverage of training for MAC at village level

• Need to target: Need to target:

1.1. PLHA + their familiesPLHA + their families2.2. Opinion Leaders Opinion Leaders general population general population

• Improved image of PLHA Improved image of PLHA Chart of rights and Chart of rights and responsibilitiesresponsibilities

Role of opinion leaders Role of opinion leaders VCT uptake -VCT uptake - Kisesa trade centreKisesa trade centre (March 2006- July (March 2006- July

2008)2008)

14th July 2008Kikwete testing - National campaign

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14th July 2007Launching of National campaign

TESTING OF TOP GOVERNMENT LEADERS

15% tested(nat level)

36%(3.2 million)

Regional launchMWANZA22nd sept

Thanks!Thanks!