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Samagama - Participatory Action Research & Knowledge in Community-based Rehabilitation
(S-PARK/CBR) (Note: all reports and files are in PDF format; for receiving these materials in other formats, send email to: sunil.deepak(at)aifo.it ) Brief Update about S-PARK/CBR Research Results of phase one (Quantitative research on impact of CBR) of S-PARK/CBR are now available as a book for full download in PDF format (6.6 MB) (added on 9 May 2012). Research update: New update on progress of S-PARK/CBR is available in PDF format (December 2011). You can download this report. It provides an overview of the main findings from the quantitative and emancipatory phases of this research. A review meeting was held in India in December 2011 to monitor the progress of the research activities. The review meeting involved the research team in India, staff working for the two CBR projects (MOB and SRMAB) and representatives of persons with disabilities. Report of this review meeting is available in PDF format (380 KB). Manual on using emancipatory research approach in CBR: Following the feedback on the draft version of this manual, it was been decided to divide it in two parts. The second draft of the manual was sent out for comments and feedback.
Now the final version of this manual is being prepared for publication in English, French and Italian.It will be available from this webpage very soon. (Updated on 9 May 2012) Latest reports of S-PARK/CBR Research Initiative Books presenting results from S-PARK/CBR Research A Book presenting main results from phase one of S-SPARK/CBR is now available for full download. This phase of the research involved a survey in about 2500 persons with disabilities from areas covered by CBR and from control areas. The book presents main results from this research. (PDF format, 6.6 MB) Printed copies of this book will be available for free distribution at first World CBR Congress to be held in Agra (India) in November 2012. (Added on 9 May 2012) Articles published in scientific Journals Emancipatory research and voices of children with disability: Download the article published in August 2011 issue of Disability and International Development Journal. You can also read the full journal at the ZBDW website (external link). (Added on 26 August 2011) Papers and Presentations at workshops, seminars and meetings
Other reports
Introduction to S-PARK/CBR Research Initiative & Older Reports S-PARK/CBR field research is composed of three main research components, that are inter-linked, and in part, parallel. These 3 field research components are: (1) Quantitative research based on structured interviews of a stratified sample of about 2500 persons from CBR area and another 300 persons from a neighbouring area not covered by CBR programme. This component of the research will also look at any uncovered persons with disabilities in the areas where CBR programme is implemented. Scientific Support Group for this component of research includes persons from St John Research institute (Bangalore), Tirupathy university, LCI South Asia, Florence university (Italy) and London University college (UK). Data collection for this part of the research is completed and data is being analysed at University of Florence (Italy) and University college London (UK).
(2) Emancipatory research, looking at impact of CBR from the point of view of persons with disabilities: The CBR programme area has about 230 self-help groups of persons with disabilities and more than 100 community level DPOs that are organised in sub-district and district level DPO federations. The Scientific Support Group for this component of research includes persons from Delhi university (India), Leeds university (UK), DPI (Italy), National Leprosy Forum (India), Mobility India (Bangalore), etc. along with about representatives of persons with disabilities and their family members. The research protocol is being finalised and members of the Core Group are being identified.
(3) Specific qualitative studies: The third phase of S-PARK/CBR has decided focus on "Integration of Emancipatory Research in routine CBR activities". Originally, this phase was supposed to collect information about some specific aspects of CBR. That original intention remains unchanged but the research methodology has changed - it will be done by CBR staff in collaboration with persons with disabilities. The specific aspects selected for this phase of research include - (i) role of self-help groups (SHGs) (ii) role of disabled persons organisations (DPOs); and, (iii) impact of videos made by disabled persons on the communities (iv) Barriers faced by different groups of persons with disabilities. In addition, this phase has some additional activities including (a) preparation of a simple guide about emancipatory research in CBR and (b) check-up of some disabled persons identified during quantitative research for specific conditions such as leprosy. Background According to WHO, about 10% of the population has a disability. Disability and poverty are closely linked in a mutually reinforcing way. More than 80% of disabled persons in developing countries do not have any access to any rehabilitation services. The strategy of community-based rehabilitation (CBR) was proposed by WHO in early nineteen eighties. Over the previous three decades, there have been a number of paradigm shifts in relation to disability and rehabilitation, including:
These paradigm shifts have seen gradually increasing role of CBR programmes in different countries specially for reaching the un-reached disabled persons in rural and poor communities. In many developing countries, CBR is part of the official national strategy for rehabilitation services. Increasingly there are calls for inclusion of persons with specific disabilities such as leprosy related disabilities and mental illness in CBR programmes. However, scientific research on different
aspects of CBR, how it is implemented, how different groups of persons with
disabilities access it and benefit from it are extremely limited. Therefore,
Disability & Rehabilitation team of WHO (WHO/DAR) has decided to promote an
international group of researchers to promote scientific research on CBR. S-PARK/CBR research initiative is part of the joint action plan of WHO/DAR and AIFO, and involves different universities from the developed and developing world. The research is rooted in participatory methodologies. The name of the initiative ("Samagama", literally it means coming together, joining hands for something useful), has been chosen by disabled persons involved in the CBR activities. Funders & Supporters of S-PARK/CBR Research Initiative S-PARK/CBR Research initiative has been funded by - AIFO/Italy; Sasakawa Memorial Health Foundation (SMHF), Japan; Fondation Internationale de la Recherche Appliquée sur le Handicap (FIRAH), France; and German Leprosy & TB Relief Association (DAHW), Germany. We take this opportunity to thank all of them - AIFO, SMHF, FIRAH and DAHW. Thanks for believing in us and agreeing to support all the three years of this research. Without your support this work would not have been possible. This research is part of AIFO's joint work plan with WHO/DAR and we would like to thank Alana Officer and Chapal Khasnabis for their belief and support for this research. There are so many other persons such as Mr. Giampiero Griffo from DPI, Prof. Mario Biggeri & Dr Vincenzo Mauro from Florence University, Dr Jean François Trani and Ms. Parul Bakshi from London university college, Dr Anita Ghai from Delhi university, Prof. Hanumantha Rao from Tirupathi university, Prof. Mario Vaz from St John medical college, Prof. Nick Emmel from Leeds university, Dr Enrico Pupulin ex head of WHO/DAR, organisations such as Leonard Cheshire South Asia, Mobility India, Basic Needs India, SPAC India, Karnataka Leprosy forum, Dr Maya Thomas editor DCID journal and many others, who have come forward to support this research in different phases. We would also like to express our heartfelt thanks to them. Finally and most important, AIFO India office especially Mr. M. V. Jose and Mr. Patrick, our partner MOB and SRMAB, the CBR coordinators and workers, members of research core group and facilitators, persons with disabilities and community representatives, they have been most accomodating and supportive of all this work. On behalf of the research team, we would also like to thank them. Research Management The research covers all of Mandya district and some parts of neighbouring Ramnagar district, an area of about 5000 sq km, where two organisations (SRMAB and MOB) have been implementing CBR programmes covering all the five areas mentioned under CBR Matrix for the last ten years and reach out to 22,000 persons with disabilities belonging to all the different disability groups. Global coordination of this research is under Dr. Sunil Deepak, head of Scientific Support Department of AIFO/Italy, while coordination in India is under Dr Jayanth Kumar of AIFO/India office with support of the research officer, Dr Parthipan Ramasamy. If you want any specific information about this research, kindly write to Dr. Sunil Deepak at AIFO/Italy: sunil.deepak(at)aifo.it (Substitute "(at)" with "@" in the email).
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