SARI Project Short overview

Wim van BrakelDisability Studies in Nederland

Beatriz Miranda, Ruth Peters, Marjolein Zweekhorst, Joske Bunders, Athena Institute, VU University Amsterdam

Irwanto, Dadun, Mimi Lusli, Rita Damayanti, Ery SedaDisability Studies Centre, Universitas Indonesia

Aim, design and methods

Aims

To measure and compare the effectiveness of three stigma reduction interventions, implemented in pairs Counselling and empowerment

Contact with affected people

Socio-economic development

To study changes in communities and clients and work with them to optimise positive effects.

Design and methods

Cluster-randomised controlled intervention study

Qualitative and quantitative methods

Interactive learning and action approach Participatory

Transdisciplinary

Reflection – learning – action loops.

Cirebon District, West Java

Cirebon District

Assessment plan

Exploratory study

Cultural validation + piloting

Psychometric validation study

Mixed methods baseline survey

Participatory monitoring

Mixed-methods assessment after two years.

Baseline results

Internalised and anticipated stigma of affected persons (n=504/520)

Experienced stigma and disclosure concerns of affected persons (n=522)

Perceived stigma in the community (n=245)

Baseline community

What is leprosy?

“I don’t know”

“Just like a normal disease”

“Not that frightening”

“Disgusting”

“Skin disease”

“A curse”

Baseline community

Why should they be excluded? Leprosy is just a normal disease. ... Whatever the case is, they have their own right to communicate and socialize with other people, so if someone says that people affected by leprosy need to be excluded, I am against that. (man, 38 years)

Well, since I lacked knowledge until this day, I always avoided them because I am afraid of getting infected. It is normal, isn’t it? I don’t want my legs to be cut. (woman, 53 years)

Interventions

Counselling

Objectives

Develop knowledge, skills and positive individual, family and social attitudes regarding leprosy

Raise awareness about human rights

Build counselling, communication, advocacy skills by training lay/peer counsellors.

Baseline affected persons

When I consulted about my disease at the community health centre, a health worker told me that I had an allergic skin problem. (counselling client)

I am sad, My friends always mock me when I want to play with them. I feel ashamed and uncomfortable. I decided to stop going to school. (counselling client).

My client asked me for a job. He went to the HC and he just got a letter saying he is a healthy person. […] “I need more than this, I need information for job opportunities […] my problem is not stigma related to my illness but my problem is a job…” (lay counsellor 5)

Cognitive Behavioural Theory (CBT)

Immediate beliefsRulesConditions

Core beliefsSelfOthersHealth careCondition

Automatic thoughts

Health event trigger

Emotionalpsychological behavioural reactions

Taylor, 2006

Human rights

Rights-based Counselling Model

CBT HumanRights

Methodology

Participants: 260 persons , 53 declined; 56 stopped before finishing 5 sessions and 69 requested extra counselling sessions

Sessions: five (family 1, individual 2; group 2)

Time: 45 minutes

Type counsellor: peer counsellor / lay counsellor

Type of counselling: group / individual / family

Impact on counsellors

Self recognition

Family recognition

Social recognition: roles as educator, advocator, adviser

Finding meaning in life

Impact on “clients” – 1

Core beliefs Overcoming fears

Confronting difficult situations

Understanding situations at home

Gaining self-confidence

Immediate beliefs Finding right information

Questioning myths

Understanding situations in community

Understanding role of health workers.

Impact on “clients” – 2

Automatic thoughts Reflecting on facts and information

Transforming negative into positive thoughts

Gaining courage from peers

Human rights Demanding better treatment

Demanding reliable information

Understanding their rights as workers

Understanding their rights as patients.

Lessons learned – counselling

Combination human rights + counselling = powerful and effective model

Counselling should be an option available in institutions / organizations

Peer counselling has powerful impact on clients and counsellors

Health workers should be given option for training

Socio-economic development (SED)

What is inclusive social economic development for stigma reduction?

Facilitate inclusion of disadvantaged persons in community

Use twin-track approach (mainstreaming and special interventions to overcome barriers)

Provide microcredit and related training

Help people form self-help groups

Involve all stakeholders People affected by leprosy, people with disability,

family, community, government and private sector

Number of participants by type of SED

Micro credit Life

stock

Skills

training

Total

Bank(KOMIDA)

DPO(FKDC)

Individual DSO/

others

SARI–

DSO

Persons

affected by

leprosy 39 20 11 21 52 144

Community

members 242 4 5 251

Persons with

disabilities 8 8

281 32 11 21 57 403

small shop24%

clothes vendor

11%

craft2%

farming 21%

food vendor34%

farming vendor

3%

recyling 3%

services2%

Categories of business developed

32 Titel in voettekst, aanpassen via Voettekst aanpassen, tab VU

Qualitative results SED – 1

We receive a loan which we can use for daily needs and for school […] My wife

could open a business. We opened a Rujak(traditional fruit and vegetable dish shop)

(FGD 2 participant)

After micro-credit, we have been able to develop […] our business (FGD 2 participant)

I can get capital to start a business […] the saving and loan is impressive… (Interview, female, 23)

I bought two bicycles for my children to go to school

Impact SED interventions

Economic Own business 69%

Saving 80%

Improved property/ assets

30%

Stigma Internal stigma Reduced

Participation Improved

Community stigma Reduced

Lesson learned – SED

Inclusive SED empowers people to fulfill their rights and to become an agent of change for themselves and their environment

SED helps to reduce people’s self-stigma but requires time and a careful process

SED interventions need a proper mentoring and monitoring system to ensure a successful outcome and sustainability.

Contact with the community

What is the contact intervention?

Aims: To reduce community stigma through direct and

indirect ‘contact’ between people affected by leprosy and community members

To empower people affected by leprosy that participate in this intervention

SARI organised events, so-called ‘contact events’ in the villages in Cirebon District Four elements: presentation about leprosy, testimony,

video, comics

Presentation about leprosy

Testimony

Participatory video

Comics

Three activities

Making participatory videos

Making comics

Conducting ‘community contact events’

91 community contact events

1 dot = 1 contact event

Watching the video guideline

Impact on video makers: very diverse

After video activity, I feel full of spirit. When people say something bad, I do not let it bother me.

If you are asking me about my insecurity, I think there is only a very small part of it left in me. The knowledge I have recently gained made me more confident. (man, 21 years)

Well, honestly I felt happy to be able to hold a handy camera. ... (man, 61 years)

I want people to know that regardless my imperfect physical state, I do not hide myself and keep doing what I can do. I want that people who watch the video think that people like me cannot work, on the contrary, I can do many kinds of work. (man, 61 years)

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

Lessons learned – contact

Makers of video inspired; advised each other on work related issues

Work was important topic for participants, reflected in themes in the video: “I can have a successful fish business”,

“I can do many different kinds of work”

Videos brought across message to community and stimulated dialogue with them.

Overall results

Results SARI internalized stigma sub-scale (n=180)

Results SARI anticipated stigma sub-scale (n=180)

Results SARI experienced stigma sub-scale (n=180)

Work participation score pre and post intervention (n=231)

Are you able to … as your peers do?

Attitude community regarding work pre and post intervention (n= 213 & 60)

0% 10% 20% 30% 40% 50% 60% 70% 80% 90% 100%

(post)

Willing to work in same job (pre)

(post)

Recommending for job (pre)

Definitely willing Probably willing Probably not willing Definitely not willing

Acknowledgements

SARI field team

Provincial and district health services

Many persons affected by leprosy in Cirebon

Coordinated by DSiN

Financial support by NLR, ALM, Effect:hope and SMHF

Questions for group work

How could disabled persons be actively involved in creating opportunities for work participation?

1. What role can peer counselling play in promoting work participation in the Netherlands?

2. Can self-help groups and micro-credit be used to promote work participation in the Netherlands?

3. How could participatory video be used to promote work participation of disabled persons in the Netherlands?