Disability Inclusive Youth (DIY) Research: an innovative and co-creative study to improve inclusion of children and youth with disabilities in health research in East Africa: a mixed-method study protocol

Abstract

Young people with disabilities are rarely included in research, yet 75% of the East African population is under 30 years old and an estimated 15% have a disability. Without including young persons with disabilities in designing and implementing health research, we will not achieve global development goals. The aim of Disability Inclusive Youth (DIY) study is to explore barriers and facilitators to inclusion of children and youth with disabilities in health research, co-create solutions to make health research in East Africa disability inclusive, and create a disability knowledge and research centre to inform and support inclusive health research in the region. The DIY study will develop a novel participatory approach to enhance the inclusion of children and youth with disabilities in health research in East Africa. We will build capacity of 12 youth with disabilities from Uganda, Kenya, and Rwanda through a research training programme. The youth researchers will conduct interviews with 75 leading health researchers, 30 key health stakeholders, and 60 children and youth with disabilities and their caregivers. Together with the youth we will design recommendations to make health research more inclusive of children and youth with disabilities through participatory workshops. At the end of the study we will have established a regional knowledge and research centre where children and youth with disabilities contribute to and health researchers consult about disability inclusive health research. Data collection methods include survey questionnaires, in-depth interviews, case studies, video and photovoice. Data will be analysed qualitatively using a thematic approach in NVIVO and quantitatively using STATA. This is a 5 year study funded by Wellcome, through the London School of Hygiene and Tropical Medicine, in partnership with the MRC/UVRI & LSHTM Uganda Research Unit, the University of Nairobi and the University of Rwanda / Lifetime Research Group.