Identifying research priorities around rehabilitation services in Uganda: lessons learned using an international collaborative process

The main objective of this research planning project was to identify rehabilitation priorities in Kasese, Uganda using a community-based approach to inform the development of future rehabilitation research and teleconsultation capacity-building activities. An international interdisciplinary team and local stakeholders followed the Canadian Institute of Health Research Framework for Action on Global Health Research to promote evidence-informed decision-making and cultivate international collaborations. First, we conducted an environmental scan of the scientific and grey literature using the Template for Rehabilitation Information Collection (TRIC) form to document rehabilitation needs in Kasese, Uganda. Second, we collaboratively reviewed the environmental scan findings using a teleconsultation platform over 4 separate meetings to build capacity and prepare for in-person meetings. Third, we met with 150 people living with disabilities and community health workers from 6 different areas in-person to co-design feasible research priorities for rehabilitation needs in children and adults. Lastly, we established research priorities and identified potential research questions, methodologies, and future funding opportunities. Findings from the environmental scan suggest the most prevalent causes of disability to be falls and road traffic accidents in adults, and falls, cerebral palsy, spina bifida, and malaria in children. The in-person meetings resulted in the co-design of five culturally appropriate research priorities targeting specific health conditions causing disabilities in Kasese, Uganda:  1) Improve knowledge of community health leaders and person with disability (PWD) around health conditions to promote agency and independence, 2) Improve efficiency of field screenings for assistive devices; 3) Improve provision of rehabilitation services by building capacity and trialing teleconsultation; 4) Improve the quality of the assistive devices delivery; and 5) Create an electronic data-based of PWD to support follow-ups. These priorities translated into the following research questions: Can a co-designed online training improve: 1) knowledge of health conditions and basic rehabilitation of community health workers 2) skills and self-efficacy to conduct field screening and basic rehabilitation of community health workers 3) knowledge and empowerment of the PWD community starting with mothers of children living with a disability? Engaging historically underrepresented experts, such as adults living with disabilities, women, and community health workers deepened the relevance of our research questions to improving community-specific rehabilitation needs. It solidified the established partnership between experts from NGOs, academic, and clinical settings from Canada and Uganda, which provided excellent opportunities for citizen engagement and capacity-building on future projects. This international collaborative process allowed us to combine the results from the environmental scan with the community rehabilitation needs specific to the Kasese district. Using these results, we defined three research questions targeting access to and provision of rehabilitation services for people living with a disability in Kasese. We learned that planning time for international relationship building and informal discussion on the current literature as well as lived experiences are key elements to the success of co-designing research priorities.