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

2

3

4

5

6

7

8

9

10

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