Samenvatting
Volledige titel: Building Responses in Diverse Global Enabling Settings (BRIDGES): Brazilian and Indonesian community programmes sharing experiences to generate knowledge towards Inclusive CBR (Community Based Research)
Participatief onderzoek naar Community Based Research initiatieven in Indonesië, Brazilië en Nederland. Ervaringen en kennis vanuit Braziliaanse, Nederlandse en Indonesische community programma's worden met elkaar gedeeld om zo meer te leren over hoe deze programma's duurzaam kunnen blijven voortbestaan.
In Indonesië bouwt dit onderzoek voort op het SARI-project.
Summary (in English)
CBR programmes and projects are now finding more supporters in the field of leprosy. This responds especially to the positive impact that CBR initiatives seem to have regarding disability, although this is still not well documented.
Considering that leprosy is no longer seen as solely an infectious disease but as a medical-social problem that causes impairmentsi; the chances that CBR could offer some sort of hope for improving the life of people affected by the disease, increases greatly especially in countries with a high incidence of leprosy cases such as Brazil and Indonesia.
In view of this, a few leprosy-inclusive CBR initiatives were thought to be taking place in Indonesia and Brazil as implemented by small DPOs, SHG and SCG. However, sustainability is difficult to reach” Only a few SCG, SHG and DPOs (not necessarily CBR) are proving successful in sustaining their work while others discontinue. Leprosy CBR initiatives are still fragile; inclusive (disability and leprosy) CBR experiences are partly weak and infrequent; thus how those initiatives could be sustainable and become more empowered is one of the main questions that people working in the field of disability and HD in Brazil and Indonesia would like to understand in order to inform future interventions.
In view of this, the current project tried to answer the following main research question: What lessons regarding sustainability can small DPOs, SGH and SCG leprosy and leprosy-inclusive initiatives in Indonesia and Brazil learn from other groups in these countries in order to become more sustainable?
It aimed to 1) explore general CBR initiatives existent in the countries selected looking at the specific topic of sustainability; 2) analyse the lessons learned from those initiatives regarding sustainability; 3) propose a kit of tools that can help CBR initiatives (especially small inclusive (leprosy-disability) DPOs or those that are in process of strengthening) to explore, analyse and build on the component of sustainability.
The results show that, on the one hand, some DPOs, SCG and SHG have evolved into spaces that could have essential elements of an informal CBR programme or network; on the other, there is still much to learn from comunity based CB approaches in other areas besides disability and leprosy (HIV, diabetes, sexual workers) that are more sustainable. Insufficient spaces exist for sharing knowledge and developing an interactive learning process between all these initiatives within countries and between countries that can strengthen the activities of groups involved in leprosy and disability. The experiences are different as the contexts. Thus, knowledge has been gained first, by looking at what is happening within each country and second, by learning between countries. The learning interaction needed to succeed in such a venture was exercised by people affected by leprosy themselves at least in Indonesia. Some work is still in progress regarding this aspect in Brazil.
Doelstelling
Onderzoeksdoelen zijn:
- exploreren van Community Based Research (CBR) initiatieven in Nederland, Brazilië en Indonesië, specifiek gericht op continuïteit;
- in kaart brengen van de lessons learned;
- ontwikkelen van een toolkit om CBR initiatieven en Disabled Peoples Organisations (vooral m.b.t. lepra) te versterken en de continuïteit van deze initiatieven en organisaties te verbeteren;
- uitwisselen van kennis, ervaringen en ideeën tussen de deelnemende organisaties en vanuit verschillende contexten.
Aims (English)
The project aimed to 1) explore general CBR initiatives existent in the countries selected looking at the specific topic of sustainability; 2) analyse the lessons learned from those initiatives regarding sustainability; 3) propose a kit of tools that can help CBR initiatives (especially small inclusive (leprosy-disability) DPOs or those that are in process of strengthening) to explore, analyse and build on the component of sustainability.
Methode
The project Bridges aimed to explore general CBR initiatives existent in Brazil and Indonesia and to address the specific topic of sustainability. A participatory approach was proposed for the research which implied that people affected by leprosy and disabled people would be active as researchers or co-researchers. During these eight months of implementation, however, the objectives and process of research in each country have been through some adjustments. It could be said that such adjustments must be considered as one of the results of the research process instead of just a methodological change.
Bridges conclude that CBR is a contextually designed strategy that aims at provoking changes in communities by promoting the inclusion of people with disabilities, facilitating their access to different services and guaranteeing the fulfilment of their rights including their right to rehabilitation and health. There are four main principles that a CBR project has to look at: sustainability, multi- sectoriality, inclusion and empowerment. They are interdependent and in order to make an initiative sustainable, these principles have to be implemented. However, since CBR is a locally constructed strategy these principles can vary and some other principles can appear depending on the needs of people and their context. This can be illustrated by the different approaches that the two projects in the two countries had followed: In Indonesia the process has been developed by the two DPOs with minimal academic discussion. Brazil, on the other hand, has not involved DPOs in this first stage. Exchange of training, field visits and materials is considered to be beneficial for both countries and projects and could inform the wider community that works with CBR initiatives and on community based development.
Resultaten
The results show that, on the one hand, some DPOs, SCG and SHG have evolved into spaces that could have essential elements of an informal CBR programme or network; on the other, there is still much to learn from comunity based CB approaches in other areas besides disability and leprosy (HIV, diabetes, sexual workers) that are more sustainable. Insufficient spaces exist for sharing knowledge and developing an interactive learning process between all these initiatives within countries and between countries that can strengthen the activities of groups involved in leprosy and disability. The experiences are different as the contexts. Thus, knowledge has been gained first, by looking at what is happening within each country and second, by learning between countries. The learning interaction needed to succeed in such a venture was exercised by people affected by leprosy themselves at least in Indonesia. Some work is still in progress regarding this aspect in Brazil.
Projectinformatie
Duration of the project: August 1, 2015 - July 31, 2016.
Personen
Beatriz Miranda-Galarza, Marie-Sol Reindl, Widya Prasetyanti, Alice Schippers, Duane Hinders
A participatory approach was proposed for the research which implied that people affected by leprosy and disabled people would be active as researchers or co-researchers.
Partners:
- Netherlands Leprosy Relief (Brazil)
- Netherlands Leprosy Relief (Indonesia)
- Movement for Reintegration of Persons Affected by Hansen's Disease (Brazil)
- Forum Disabilitas Cirebon FKDC (Indonesia)
- Federal University of Ceará (Brazil)
- University of Indonesia (Indonesia)
LRI Foundation (Leprosy Research Initiavive Foundation) was financial partner of this project.
Host institution is Disability Studies in Nederland
Contact
Disability Studies in Nederland: info@disabiltiystudies.nl