the sari project: a randomised controlled trial of ... · the sari project: a randomised controlled...
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The SARI Project: a randomised controlled trial of interventions to reduce stigma in Cirebon, Indonesia
Dr Wim van BrakelNetherlands Leprosy ReliefDisability Studies in Nederland
Beatrice Miranda, Ruth Peters, Marjolein Zweekhorst, Joske Bunders, Athena Institute, VU University Amsterdam
Irwanto, Dadun, Mimi Lusli, Rita Damayanti, Ery SedaDisability Studies Centre, Universitas Indonesia
SARI Project: outline (Dadun et al 2017)
Tested effectiveness of 3 stigma reduction interventions using RCT design Peer-counselling, Contact with affected persons, SED
Key features Participatory, transdisciplinary, mixed-methods research
Interventions designed together with end users Affected persons and persons with disabilities actively
involved at every level and in all stages of project Flexible implementation
Baseline survey => interventions Ongoing monitoring, learning and adaptation => final survey (after 2 years) Ongoing communication and dialogue with health services
Cirebon District, West Java
SARI Stigma Scale
Derived from Berger HIV stigma scale Culturally validated for use in Indonesia Now 21-item scale Good psychometric properties Covers
Anticipated stigma Disclosure concerns Internalised stigma Experienced stigma
Anticipated and experienced stigma (SARI scale) (Baseline survey, n=590)
0 10 20 30 40 50 60 70 80 90 100
Do people keep distance
Did you loose friends
Do people seem afraid of you
People backed away from you
Do people loose their jobs
Do people feel uncomfortable
Person affected is disgusting
Percentage
Seldom/once Sometimes Often/always
Expressions of internalised stigma (SARI scale) (baseline survey, n=590)
0 10 20 30 40 50 60 70 80 90 100
Do you feel guilty
Feel not as good a person
Embarrassed to have (had) leprosy
Does leprosy make your feel unclean
Feel apart and isolated
Feel a bad person
Percentage
Seldom/once Sometimes Often/always
Interventions
Counselling
To develop knowledge, skills and positive attitudes regarding leprosy
Counselling approach Theory: Cognitive Behavioural Theory + Human Rights Type of counselling: group, individual , family Sessions: 5 of 45 minutes each
23 lay and peer counsellors trained 260 clients offered counselling
Socio-economic development
To facilitate socio-economic empowerment of affected persons
SED approach Use twin-track approach (mainstreaming + special
interventions) Provide microcredit (70 clients)
Formal micro-finance bank (KOMIDA) DPO (FKDC)
Business training Monitoring and coaching.
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Contact with the community
To reduce community stigma through direct and indirect ‘contact’
To empower people affected by leprosy that participate in this intervention
Contact approach Organising ‘contact events’ in villages and
neighbourhoods; 4 elements: Knowledge about leprosy Testimony Video Comics
Participatory video
Comics
4,443attended
Coverage of contact events
91events
53,000heard secondhand
0 5 10 15 20 25 30
Experienced stigma
Internalized stigma
Disclosure concerns
Anticipated stigma
Total stigma score
Mean sum score
Baseline survey 2012 (n=237) Final survey 2014 (n=237)
SARI stigma scores at baseline and final survey (affected persons)
Community stigma scores (SDS) at baseline and final survey (n= 213 & 375)
0
1
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Control SED Counselling CounsellingContact
Contact SED Attendedcontact event
Baseline Final survey
Conclusions
Peer counselling has powerful impact on clients and counsellors Structural link with health services needed
SED empowers people to fulfil their rights and to become agents of change for themselves and their environment
Contact events effective in increasing knowledge and reducing stigmatizing attitudes
Participatory video and comic making are reproducible interventions
It is possible to achieve significant, measurable reduction in public stigma and in stigma perceived and experienced by affected persons
Evidence-based interventions are now available with instructions for their use
Interventions should be replicated and scaled up in areas where leprosy-related stigma is known to be a problem.
Acknowledgements
National Leprosy Control Programme, Ministry of Health, Government of Indonesia
Provincial and district health services SARI field team Persons affected by leprosy in Cirebon Coordinated by DSiN Financial support by NLR, ALM, Effect:hope
and SMHF NLR is a member of