Towards Inclusive Community-based research: Lessons learned from disability and rehabilitation research in Cameroon Julius Wango 1, Aloys Njitor 1, Lynn Cockburn 1,2, Acheinegeh Ruth 1,3, Ezekiel Benuh 4, Nyincho Samuel 1,3, Goli Hashemi 1,2 1 BCCSDR Bamenda Coordinating Centre for Studies in Disability and Rehabilitation, Bamenda, Cameroon 2 ICDR International Centre for Disability and Rehabilitation and OS& OT Department of Occupational Science and Occupational Therapy, University of Toronto 3 CUAPWD Coordinating Unit of Associations of People with Disabilities, Bamenda, Cameroon 4 SEEPD Socio-Economic Empowerment of People with Disabilities, Cameroon Baptist Convention Health Board CU Expo, May 11, 2011 Waterloo Ontario Canada

Plan for the workshop Who we are and what we do Ideas about why/how to include people with disabilities in community-based research, esp. in African contexts Group discussions –Values –Study Design: How will impairments and disabilities be included in your research? –Recruitment –Learning and Training –Implementation –Working with DPOs –Evaluation, On-going support, Dissemination, Follow-up

Introductions and setting the context

Where is Cameroon? West/Central Africa Nigeria to the west Atlantic Ocean to south Equatorial Guinea, Gabon and Congo to south Central African Republic and Chad to the east Lake Chad to the north

Bamenda is about 6 hours drive from Douala Highlands ~ 14000feet The North West Region

How this context is similar to others Lots of differences and similarities between people – pay attention Political issues impact day to day work (large and small; national and local) People with impairments & disabilities want to be included in all aspects of life (and research) Never enough money, time, resources

Julius Wango

Ruth, Emmanuel & Sam

Goli with Eric and Caveh

Aloys with colleague at January 2011 conference

Ezekiel

Overview – Stories and Values of our research work Community organizing HIV and Disability Best Practices in Rehabilitation Prevalence Study Women and Disabilities

Community Based Research Working with community groups

Discussing Disability and AIDS issues in Bafut Town

Strengths and Resources of WWD  Individual oRadio shows oNetworking with schools/churches  Group initiatives  Family and community support

Need for Inclusion… 90% Persons with disabilities are not being reached by development activities (UN) The special needs of persons with disabilities are often overlooked in relief operations. (UK DFID) Only 2% of persons with disabilities have access to rehabilitation and appropriate basic services.

Inclusion Cont’d Mortality of children with disabilities can be as high as 80% even in countries where overall under-five mortality is below 20%. 1 in 10 children are born with, or acquire, a disability. Only 1-2% of children with disabilities in developing countries receive an education.

Discussion

The Inclusive Research process Key Concepts –Think about what research is –Build a local community of researchers who are connected to larger national and global communities –Know that time is needed –Ask, encourage questions and “difficult” conversations –Value everyone’s contribution – Recognize that EVERYONE brings something to the project and the knowledge that is growing (even when there are differences of opinion)

What is research, and why bother with it? An organized way of studying an issue or problem producing and using knowledge to make progressive social change. Have to understand what is currently happening, and what suggestions people within communities have to make their lives and their communities better. We need clear and trustworthy knowledge about strengths, needs and opportunities so that we can make the best decisions possible. Research and knowledge creation can take many forms.

Focused Discussion and written feedback 5 to 10 minutes for each topic

Inclusive Process Designing the Study Confidentiality and Consent Selecting Tools and designing surveys and tools Considering outcomes What indicators and outcome should we use in our work to assess whether the lives of people with disabilities are actually improving? –For all of these - how to measure? Improve the lives of PWD – quality of life or something else? Increase integration Increase income Increase access to services – health, social services, education, work related Decrease marginalization, stigma and discrimination Improvement of QOL

Study Design How will impairments and disabilities be included in your research?

Working with DPOs Valuable insights into all aspects of community life Often “marginalized” – discrimination Takes more time Implications of limited educational opportunities and social engagement

Recruitment Make inclusion explicit in your job ads Anticipate ways to include people Build into budget Can have “buddies” e.g. for research assistants, for analysis

Team building and training Research Assistants Ensuring adequate training about disability issues Travel and lodging when in the field Including PWD as team members and RAs

Learning and Training Include education about impairments and disabilities in the learning and training processes that you have Academic articles are stories told in a different way

Considering the many people who have authority and interest Conversations - All required permissions should be obtained from the appropriate authorities before any fieldwork is undertaken. Working with and managing community responses’ and expectations. Care must be taken to not raise expectations as a result of the study. All respondents are to be treated with respect. All members of team financed are expected to behave appropriately during fieldwork with respect for local cultural norms.

Ethical review Review boards sometimes need assistance; can also be helpful and supportive Consider two stage (or more!) process Communication and discussion

Implementation of the plan Build in processes to accommodate and support PWD involved in the study Discuss and learn from what happens Ruth’s story: Reactions of participants to a researcher with a visible disability

Provide relevant information Build in ways to educate as part of the research process

Avoiding duplications and “using” communities Know what studies have gone before if possible Expect that some people will have had negative research experiences in the past

Managing Difficult situations Eating and drinking Family conflict Attitudes towards researchers

Being human The importance having a personal relationship with people who are often marginalized, excluded or lonely Ethically and emotionally coping with difficulties Aloys’ Story about the conversations he had with old men

Analysis Involving PWD and RAs in analysis Reporting in various ways – need to ensure that final results are truly available in usable formats

Sharing Information - Dissemination How will you share your results so they are accessible? Conference Panel Discussion Nyincho Sam sharing information alongside a social worker and lawyer

Evaluation, On-going support, Follow-up Plan from the beginning if possible Liaise with other groups Networking to continue to build awareness and knowledge Try to document what your group has learned

Discussion Summary of key points and wrap-up

Thank you ~~ Meyaka Lynn Cockburn Julius Wango Bamenda Co-ordindationg Centre for Studies in Disability and Rehabilitaiton