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

TL;DR

This study aims to include children and youth with disabilities in health research in East Africa by training young researchers to identify barriers and co-create solutions for better inclusion.

Contribution

The study introduces a novel participatory approach to make health research disability inclusive by involving youth with disabilities in its design and implementation.

Findings

12 youth with disabilities will be trained to conduct health research in Uganda, Kenya, and Rwanda.

Recommendations for inclusive health research will be developed through participatory workshops with youth researchers.

A regional disability knowledge and research centre will be established to support inclusive health research.

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.

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. This study will forge a novel participatory approach to include children and youth with disabilities in health research in East Africa. We will build the research capacity of 12 youth with disabilities in Uganda, Kenya and Rwanda to explore the barriers and facilitators to disability inclusive health research. The youth researchers will interview leading health researchers, key health stakeholders, government and research organisations, health service providers and children and youth with disabilities. Together with the youth we will establish recommendations to make health research more inclusive of children and youth with disabilities.