The MRC/UVRI & LSHTM Uganda Research Unit is pleased to announce that youth with disabilities who were trained and mentored in a one year research program have successfully conducted high quality research and shared best practices with government entities, Non Governmental Organisations (NGOs) and fellow researchers.

An Innovative Intervention

Funded by the Arts and Humanities Research Council / United Kingdom Research and Innovation, the collaborative study, ‘Disabled Youth Investigates: a co-creative research program’ sought to address the significant underrepresentation of youth with disabilities in research, particularly in low and middle income countries. It brought together researchers from the Medical Research Council/Uganda Virus Research Institute and London School of Hygiene & Tropical Medicine (MRC/UVRI & LSHTM) Uganda Research Unit, Makerere University’s Child Health and Development Centre, the THRU Zim health unit in Zimbabwe and National Council for Persons with Disabilities (NCPD).

Empowering Youth with Disabilities

With 12.4% of Uganda’s population living with a diability, it is crucial for research to reflect this demographic. The project piloted an innovative peer to peer support model for disability-inclusive research training, drawing from the successful Youth Research Academy and ‘Obuntu bulamu’ research programmes in Zimbabwe and Uganda. Fourteen young people, aged 18 to 30, received 6 months of intense research skills training, mentoring and internships, attached to existing research studies at the Unit and Makerere University. Paired with peers without disabilities, they collected data from 30 other youths on social participation and research involvement. The youth researchers also facilitated knowledge exchange nationally and internationally, created impactful social media messages and developed a participatory film, highlighting the importance of inclusive research practices.

Impact

The Disabled Youth Investigates project empowered youth with disabilities to lead and conduct research, proving their capability when provided with appropriate training and support. Participants praised the project’s inclusive approach, as one male respondent shared, ‘It was really a pleasure because the person who interviewed me has cerebral palsy and I also live with it. I was able to interact with him freely’, referring to Tonny Agea, a youth researcher with cerebral palsy and a hearing impairment.

Six out of the 14 youth researchers were employed by the MRC/UVRI and LSHTM Uganda Research Unit at the end of the project, with two securing jobs elsewhere. The project provided reasonable accommodations, including sign language interpretation, screenreaders, large and braille prints, and accessible office space. Lilian Namukasa from the National Council of Persons with Disabilities, a partner in this project, pointed out that ‘this project contributed to affirmative action in employment of persons with disabilities, following Uganda’s Employment Act, Disability Act and Building Control Act.’

The peer to peer support and mentoring model effectively trained youth with disabilities in research skills, increased their employment prospects and raised awareness about the value of inclusive research. Betty Akwii, a researcher with albinism, highlighted the mutual learning in the peer support model saying, ‘…me learning from my peer as my peer learns from me really stood out for me. Also another thing that stood out was the way we were engaged, …we have really owned the process’. In addition, Ronald Kamusiime, a researcher with a visual impairment, emphasized the impact of mentorship on his personal and professional growth. He said, ‘This project gave us the opportunity to work alongside our mentors and these mentors have shaped my character, my outlook in life and also in career.’

Youth researchers led the creation and presentation of research findings at various national and international forums, including the Makerere University Disability Day and the African Network for Action in Disability (AfriNEAD) conference in Cape Town. They also participated in events like the FriendsF4R event in the United Kingdom, further spreading awareness about disability-inclusive research through experience sharing. Being involved in designing and sharing findings gave youth a voice and sense of belonging, as described by a participant with a physical impairment: ‘Having been allowed to be part of the filmmaking, it gave us a sense of belonging. It has given us the courage that people with disability are also looked at as important persons that count in society.’

Dr Femke Bannink Mbazzi, Principal Investigator of the study and Head of the Disability Research Group at the Unit noted, ‘In this project we have not only built capacity of youth with disabilities but we have also changed the way we think about disability inclusion, and we have learned how best to include persons with disabilities as participants and staff’.

Professor Moffat Nyirenda, Director of the MRC/UVRI and LSHTM Uganda Research Unit added, ‘The youth have highly enriched our environment. They have challenged us in terms of understanding the importance of inclusion with a focus on disability but even in a wider context.’

Dr Herbert Muyinda, Co-Investigator and head of the Child Health and Development Centre at Makerere University echoed this, and emphasized that ‘Including youth with disabilities in research adds value to our studies and science… Having youth researchers with disabilities on board contributes towards changing stereotypes and improves inclusivity of people with disabilities in research’.

Findings of the study and the participatory film can be viewed on the Unit’s website

 About The Collaborating Institutions:

The Medical Research Council/Uganda Virus Institute/ London School of Hygiene & Tropical Medicine (MRC/UVRI & LSHTM) Uganda Research Unit  is an internationally recognized centre of excellence for research and training. Its mission is to conduct high-quality research that adds knowledge and leads to improved control of infectious and non-communicable diseases in Uganda, Africa and globally, through translation of scientific findings into policy and practice, and rigorous research capacity building. The Disability Research Group is situated in the Non-Communicable Diseases Research Theme at the Unit.

The Child Health and Development Centre (CHDC) - Makerere University is a multidisciplinary research centre in the school of medicine, Makerere University College of health sciences. CHDC’s mandate is to promote holistic responses to community health needs and well-being of children and women in Uganda through multi-disciplinary and multi-sectoral research, teaching, and training. The Centre also fulfils her mandate through strengthening of partnerships between the university, communities, government, and other stakeholders in health and development partners. CHDC is part of the prestigious national Makerere University’s College of Health Sciences and has a wealth of experience in delivering research training and implementation.

The National Council for Persons with Disabilities (NCPD) is a Government Institution responsible for monitoring and reporting on disability issues in the country. The Council has structures at National and in all Districts in Uganda. The Council comprised of persons with disabilities, including youth, as well as parents of children with disabilities, representatives of parliament, government ministries, and NGOs working in disability. The Council’s mandate is to monitor the implementation of the Persons with Disabilities Act 2020, including disability research, and provide technical assistance in the area of disability inclusion in Uganda. Lillian Namukasa of the Council supported the project to recruit and train youth with disabilities and supported validation and dissemination activities. The learn more of NCPD,follow the link; www.ncpd.go.ug.

The Health Research Unit Zimbabwe (THRU ZIM)at the Biomedical Research and Training Institute conducts research aimed at improving health and wellbeing across the life-course. THRU ZIM focuses on public health issues of relevance to Zimbabwe and the African region. THRU ZIM’s Youth Research Academy in Zimbabwe trains youth researchers (18-24 years) on the concept and purpose of research and the research process. Following a two-week residential training, youth researchers are offered the opportunity to carry out supervised research, working with a dedicated mentor alongside a highly experienced research team. Dr Mandikudza Tembo of THRU ZIM contributed to the development of the training manual and delivery of the youth training in Uganda.

About the Key Scientists:
Dr Femke Bannink Mbazzi, Principal Investigator and Head Disability Research Group at the MRC/UVRI & LSHTM Uganda Research Unit and Associate Professor at the International Centre for Evidence in Disability at LSHTM, has over 20 years of disability program and research experience in Uganda and was responsible for the overall management and coordination of this project. She is a clinical and educational psychologist and anthropologist with a PhD from Ghent University, Belgium. She is passionate about participatory research in which she co-creates interventions and informs policy that improves the quality of life of children and youth with disabilities in East Africa. She is based at the MRC/UVRI & LSHTM Uganda Research Unit.

Dr Herbert Muyinda, Co-Investigator and Head Child Health and Development Centre at Makerere University has over 25 years of experience in child and youth research with a focus on capacity building, disability, mental health, utilization of indigenous knowledge and HIV. He provided technical support in the development and delivery of the training, as well as mentorship during the internships and research phases in this project. He has a physical disability. Together with his research team at CHDC he supported 4 of the 12 youth researchers in their research programs, focused on making the parenting program the centre developed inclusive of parents of children with disabilities and parents with disabilities.