DIsabled Youth Investigates (DIY): a co-creative research collaboration
Lead Research Organisation:
London School of Hygiene and Tropical Medicine
Department Name: MRC/UVRI and LSHTM Research Unit Uganda
Abstract
Young people with disabilities are rarely included in research, even less so in African countries, yet their engagement in leading and shaping research is key to ensuring participation and inclusion for all. The DIY project aims to improve participation and inclusion of youth with disabilities in research to change negative attitudes and behaviour towards youth with disabilities in Uganda.
The objectives of the DIY project are to develop and implement youth led African childhood disability research, create opportunities for disabled youth employment in research, and encourage and facilitate youth led knowledge sharing and awareness raising. The project will train 12 young people with disabilities in research skills, support internships for trained youth, conduct co-creative research with another 30 youth, and facilitate youth led knowledge exchange and transfer of research findings in Central Uganda.
This project will foster and expand existing partnerships between academic institutions and organizations of persons with disabilities from Uganda, Zimbabwe, and the United Kingdom, and will contribute to the creation of a decolonized, equitable, diverse, and inclusive research community. All investigators and project partners live and work in Uganda or Zimbabwe, have a disability or are caregivers of persons with disabilities.
The objectives of the DIY project are to develop and implement youth led African childhood disability research, create opportunities for disabled youth employment in research, and encourage and facilitate youth led knowledge sharing and awareness raising. The project will train 12 young people with disabilities in research skills, support internships for trained youth, conduct co-creative research with another 30 youth, and facilitate youth led knowledge exchange and transfer of research findings in Central Uganda.
This project will foster and expand existing partnerships between academic institutions and organizations of persons with disabilities from Uganda, Zimbabwe, and the United Kingdom, and will contribute to the creation of a decolonized, equitable, diverse, and inclusive research community. All investigators and project partners live and work in Uganda or Zimbabwe, have a disability or are caregivers of persons with disabilities.
Organisations
- London School of Hygiene and Tropical Medicine (Lead Research Organisation)
- Makerere University (Collaboration)
- University of Lancashire (Collaboration)
- Biomedical Research and Training Institute (BRTI) (Collaboration)
- Nat. Council for Persons with Disability (Project Partner)
- Biomedical Research and Training Inst (Project Partner)
| Title | Disabled Youth Investigates Participatory Film |
| Description | This participatory film was created with youth with disabilities to describe their experiences in research training and implementation in Uganda. |
| Type Of Art | Film/Video/Animation |
| Year Produced | 2024 |
| Impact | We received various requests for presentations of study findings and best practices from conference organizers, national media, and different academic institutions. In addition, we received requests for information and opportunities for future capacity building programs from youth with disabilities from the region. |
| URL | https://vimeo.com/951856897 |
| Description | We trained and mentored 7 youths with disabilities and 7 peers without disabilities aged between 18 to 30 years with skills in data collection and analysis through a training and internship programme within the MRC/UVRI & LSHTM Uganda Research Unit's programmes on viral pathogens, vaccine research, and non-communicable diseases. We had originally planned for 12 but were keen to make sure that there was sufficient impairment representation and also anticipated some may drop out over the course of the project as they may get other education or employment opportunities. As expected one of the youth with a disability resigned from the project in February 2024. In addition, a peer started a job elsewhere in March 2024 and still joined the final dissemination event, but no other ongoing activities. The other 12 completed the project. With the project we increased awareness of researchers at the unit and collaborating partners on disability inclusive researchers and built capacity of youth with disabilities. The youth shared their experiences at various international and national conferences and meetings, thereby creating awareness about the possibility and importance of including youth with disabilities in research. They have shown that improving the involvement of youth with disabilities in research is possible with an accessible and feasible training and mentoring programme which has the potential to improve equity, diversity and inclusion in research. The trained youth interviewed 31 other youth with disabilities about participation. They found that poverty, negative attitude, inaccessible infrastructure mostly hinder social participation of youth with disabilities in Uganda. Facilitating factors to engage in education, employment and social life were family and peer acceptance/support, assistive technology, and scholarships. The youth also developed a participatory film which contributed to advocacy efforts for the establishment and implementation of positive national policy and practice in inclusivity of persons with disability in research. |
| Exploitation Route | The training manual and participatory film is used in training, advocacy and awareness raising initiatives on disability inclusive research beyond Uganda. The training programme will be utilized in two recently awarded Wellcome Career Development Grant and NIHR Global Health Group grant to the AHRC grant holder and partners in Uganda, Kenya and Rwanda. These grants aim to make health research and sexual and reproductive health care services more disability inclusive for children and youth with disabilities. |
| Sectors | Communities and Social Services/Policy Education Healthcare Other |
| URL | https://www.lshtm.ac.uk/research/centres-projects-groups/disability-research-group-east-africa#updates |
| Description | Various Organizations of Persons with Disabilities (OPDs) in Uganda have invited the youth researchers and DRG team to their annual meetings and have sent other youth to apply for the training and internship program and the unit, as they learned about the disability inclusive research programme and are interested and supportive of this. We have also received requests from Non Governmental Organizations (NGOs) to second trained youth researchers to support monitoring and evaluation activities in their organizations. In addition academic institutions have invited the youth to present their experiences at disability awareness days. Ten of the fourteen youth researchers were employed after the programme: 6 at the MRC/UVRI & LSHTM Uganda Research Unit, 2 at Makerere University and 2 at NGOs working in disability and employment. In collaboration with Makerere University, Nairobi University and the University of Rwanda and the National Councils for Persons with Disabilities and OPDs in the 3 countries, we developed and were granted two projects on disability inclusive health research and sexual and reproductive health care interventions which utilized the Disabled Youth Investigates training programme and mentoring approach. |
| First Year Of Impact | 2024 |
| Sector | Education,Healthcare |
| Impact Types | Cultural Societal |
| Description | Disability Inclusive Youth (DIY) research: an innovative and co-creative programme to improve inclusion of children and youth with disabilities in health research in East Africa |
| Amount | £1,453,870 (GBP) |
| Funding ID | 307232/Z/23/Z |
| Organisation | Wellcome Trust |
| Sector | Charity/Non Profit |
| Country | United Kingdom |
| Start | 08/2024 |
| End | 09/2029 |
| Title | Disability Inclusive Research Training Manual |
| Description | The team reviewed and adapted the THRUZim Youth Researchers Training Manual for use in Disability Research with youth with disabilities in Uganda. This training manual consists of a 1 week training and covers the topic disability frameworks, types of research, research methods including ethics, data collection and analysis as well as dissemination. The training manual was developed in collaboration with the research team and the 3 partner organizations THRUZim, Makerere University and NCPD. |
| Type Of Material | Improvements to research infrastructure |
| Year Produced | 2023 |
| Provided To Others? | Yes |
| Impact | The training manual was utilized to train youth with disabilities and evaluated by the trainers and youth researchers. It is available upon request for use in other countries. The unit will use this manual in parts and full in future trainings for interns and researchers interested in learning more about disability research. |
| Title | Dataset of life history interviews of youths with disabilities |
| Description | Dataset with interview data of 31 Ugandan youth with disabilities. The dataset contains demographic variables such as gender, age, education level, current employment and impairment type as well as qualitative interview data. |
| Type Of Material | Database/Collection of data |
| Year Produced | 2024 |
| Provided To Others? | No |
| Impact | The data showed poverty, negative attitude, inaccessible infrastructure hindering social participation. The life histories also showed that youth with disabilities are benefiting from family and peer acceptance/support, assistive technology, and scholarships to engage in education, employment and social life. |
| Title | Dataset youth researchers |
| Description | Dataset with recruitment, training, mentoring and evaluation data on the 14 youth researchers participating in the project. |
| Type Of Material | Database/Collection of data |
| Year Produced | 2024 |
| Provided To Others? | No |
| Impact | Evaluation data from the youth researchers training programme show overall positive responses to the programme, request for extending the internship duration, appreciation of the peer to peer support model, and increased knowledge about disability research. |
| Description | Collaboration with FriendsF4R / UCLAN |
| Organisation | University of Lancashire |
| Department | Psychosocial Research Unit |
| Country | United Kingdom |
| Sector | Academic/University |
| PI Contribution | The youth researchers of the DIY project have joined the UCLAN FriendsF4R network and have contributed to meetings and awareness raising events. |
| Collaborator Contribution | UCLAN invited 2 youth researchers to attend a Friends4R event in the UK in April 2024 and another event in Rwanda in December 2024 and provided funding for their travel. They also funded some awareness raising activities in Uganda, which the youth researchers organized. |
| Impact | This collaboration has grown the Ugandan youth researchers' international network and has given them opportunities to share and learn from others as well as contribute their experiences for other persons with disabilities and academicians working in disability research to learn from. The youth are still engaged in this network which will continue to exist beyond the grant timeline. |
| Start Year | 2023 |
| Description | Collaboration with Makerere University |
| Organisation | Makerere University |
| Department | Child Health and Development Centre |
| Country | Uganda |
| Sector | Academic/University |
| PI Contribution | Within the DIY project we have included researchers from the Makerere University, Child Health and Development Centre, as trainees in the project, and consolidated some existing partnerships that existed prior to the project. We contributed to improving disability inclusive and participatory research skills in the partner organisation's team. |
| Collaborator Contribution | Within the DIY project 4 of the youth researchers were seconded to Makerere University, Child Health and Development Centre, as interns as part of the project. After completing their internship, they were able to acquire a small grant within Makerere University which continued to pay their stipends and allowed them to continue to be involved in the CHDC's ongoing research as co-researchers. In addition Dr Herbert Muyinda has contributed to training the DIY youth in this project. |
| Impact | 12 youths have been trained and received mentorship on disability inclusive research. Staff at CHDC and the MRC Uganda Unit have been made more aware about disability inclusive employment and research. CHDC and the MRC Uganda Unit have applied and were granted further research funding by NIHR to make sexual and reproductive health services more inclusive of youth with disabilities with youth researchers as part of its research team. |
| Start Year | 2023 |
| Description | Collaboration with the THRU Zim Youth Research Academy at the BRTI |
| Organisation | Biomedical Research and Training Institute (BRTI) |
| Country | Zimbabwe |
| Sector | Charity/Non Profit |
| PI Contribution | We involved Dr Mandikudza Tembo from the THRU Zim / BRTI Youth Research Academy in the adaptation and delivery of the youth research training manual for youth researchers with disabilities, broadening the scope of the Youth Research Academy to include youth with disabilities. |
| Collaborator Contribution | Dr Mandikudza Tembo from the THRU Zim / BRTI Youth Research Academy (https://www.thruzim.org/trainingandmentorship) shared with us the existing Youth Researchers Training Manual developed in Zimbabwe. She supported the adaptation of the youth research training manual for disability research through online meetings and document reviews. In addition, she came to Uganda to co-deliver the training to the DIY youth researchers in June 2023. |
| Impact | The Youth Research Training Manual for disability inclusive research has been used to train the DIY youth researchers. Over the duration of the project we evaluate the manual and training programme with the youth. We will use the same manual to train youth researchers in new programmes funded by Wellcome and NIHR in East Africa in 2025 and 2026. |
| Start Year | 2023 |
| Description | AfriNEAD conference presentations |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | International |
| Primary Audience | Other audiences |
| Results and Impact | Ten members of the Disability Research Group (5 staff and 5 youth researchers) attended the AfriNEAD conference in Cape Town, South Africa and gave a range of presentations: key note from Dr Femke Bannink Mbazzi, presentations from the Obuntu bulamu study team (2), the Disabled Youth Investigates (DYI) study (1), the Young Africa Works study (1), the General Population Cohort disability data (1), the Missing Billion study on improving health of persons with disabilities (2), and the CIC spina bifida study (1). |
| Year(s) Of Engagement Activity | 2023 |
| Description | DIY Youth Researchers present and participate in the the FriendsF4R forum of The Centre for Children and Young People's Participation of UCLAN. |
| Form Of Engagement Activity | Participation in an activity, workshop or similar |
| Part Of Official Scheme? | No |
| Geographic Reach | International |
| Primary Audience | Study participants or study members |
| Results and Impact | The FriendsF4R / Ucan 2 is part of the UKRI AHRC grant held by Deborah Crook of University of Central Lancashire. The DIY youth researchers became part of this international network and solidarity group during the project and presented their experiences to other youth in the network in December 2023 and January 2024. One representatives of the group attended a physical Friends4R event in Wales in April 2024 and another two a meeting in Rwanda in November 2024. |
| Year(s) Of Engagement Activity | 2023,2024 |
| URL | https://www.ucanmakechange2.org/friendsf4r/ |
| Description | DIY Youth Researchers present at the AfriNEAD conference in Cape Town, South Africa |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | International |
| Primary Audience | Other audiences |
| Results and Impact | 5 youth researchers attended and presented their experiences as co-researchers at the AfriNEAD conference in Cape Town, November 2023. In addition the other youth researchers attended the conference online. This built the youths capacity and created awareness about the abilities of young researchers with disabilities and built international networks between the youth from Uganda and youth from other African countries. |
| Year(s) Of Engagement Activity | 2023 |
| URL | https://afri-can.org/7th-afrinead-conference-2nd-call-for-abstract/#:~:text=7th%20AFRINEAD%20CONFERE... |
| Description | DIY Youth Researchers present at the MRC/UVRI & LSHTM Uganda Research Unit Seminar Series |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Other audiences |
| Results and Impact | DIY Youth Researchers presented their experience to MRC/UVRI & LSHTM Uganda Research Unit staff in the Weekly Seminar Series meeting on Friday September 22nd 2023. The Seminar Series (hybrid meetings) are attended by approximately 120 unit staff and 20 - 30 researchers from partner universities and organizations. They are followed by questions and discussions with the researchers in attendance. The youth's presentation raised awareness and sparked a discussion about disability inclusive research at the MRC, UVRI and partner institutions in the country as well as the need to engage and sensitize regulatory bodies on disability inclusion. A follow up meeting to advise management on disability inclusive actions was planned for October. A meeting with the national research council will be planned for 2024. |
| Year(s) Of Engagement Activity | 2023 |
| Description | Disability community workshop |
| Form Of Engagement Activity | Participation in an activity, workshop or similar |
| Part Of Official Scheme? | No |
| Geographic Reach | Local |
| Primary Audience | Patients, carers and/or patient groups |
| Results and Impact | The community workshop on 12th April 2024 was attended by 30 youth researchers and mentors, persons with disabilities, local leaders, DIY study participants, representatives of Organizations of Persons with Disabilities (OPDs) and academicians. The youth presented study findings including the participatory film and had a panel discussion with OPD representatives, local leadership, and study participants. |
| Year(s) Of Engagement Activity | 2024 |
| URL | https://www.ncpd.go.ug/aricle/youth-disabilities-leading-change-inclusive-research-0 |
| Description | Engagement with African Community Based Inclusive Development Community |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | International |
| Primary Audience | Policymakers/politicians |
| Results and Impact | Youth researchers informed over 200 African disability activists, politicians and academicians about the Disabled Youth Investigates training programme and displayed the participatory film at the CBR/CBID Africa Conference in Entebbe in September 2024. This sparked questions and interest in collaboration and use of the approach in other settings. |
| Year(s) Of Engagement Activity | 2024 |
| URL | https://x.com/MRC_Uganda/status/1835981212688507249 |
| Description | Engagement with Higher Education Institutions |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Postgraduate students |
| Results and Impact | Disability research group informed over 200 Ugandan Higher Education staff about the youth researchers training programme as well as research findings from other disability inclusion studies at the Disability Inclusive Higher Education Conference at Kyambogo University. This sparked questions and interest in collaboration and use of the approach in universities in the region. It has also resulted in various students with disabilities applying to the the unit's internship and training programme. |
| Year(s) Of Engagement Activity | 2024 |
| URL | https://x.com/MRC_Uganda/status/1856625840512979322 |
| Description | International Networks for Disability-Inclusive Global Development meeting |
| Form Of Engagement Activity | Participation in an activity, workshop or similar |
| Part Of Official Scheme? | No |
| Geographic Reach | International |
| Primary Audience | Postgraduate students |
| Results and Impact | The PI and Co-I attended the online International Networks for Disability-Inclusive Global Development meetings held between the AHRC disability grant holders, organized by Stephen Thompson of the Institute of Development Studies. |
| Year(s) Of Engagement Activity | 2023,2024 |
| URL | https://padlet.com/sthompson254/future-research-agendas-1ez4speidnvn4s30 |
| Description | Makerere University Business School Disability Awareness Day 2023 |
| Form Of Engagement Activity | A formal working group, expert panel or dialogue |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Other audiences |
| Results and Impact | 6 youth researchers attended the Makerere University Business School Disability Awareness Day 2023 themed Empowering Ability: Embracing Diversity, Fostering Inclusion and represented the DIY project in an expert panel discussion and in the awareness raising and display area. |
| Year(s) Of Engagement Activity | 2023 |
| URL | https://mubs.ac.ug/mubs-disability-awareness-day/ |
| Description | Media presentations |
| Form Of Engagement Activity | A press release, press conference or response to a media enquiry/interview |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Media (as a channel to the public) |
| Results and Impact | Television, radio, social media and newspaper representative from over 10 media stations in Uganda were invited for a press release to share the study findings and advocate for inclusion of youth with disabilities in research. This resulted in 3 television shows and 2 radio shows in which youth were invited to share their experiences, as well as social media posts, newspaper articles. |
| Year(s) Of Engagement Activity | 2024 |
| URL | https://www.lshtm.ac.uk/research/centres-projects-groups/disability-research-group-east-africa#updat... |
| Description | Patient group event Uganda National Association for the Deaf |
| Form Of Engagement Activity | Participation in an activity, workshop or similar |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Patients, carers and/or patient groups |
| Results and Impact | The four DIY youth researchers with a hearing impairment represented the DIY project and exchanged experiences in research with Uganda's deaf community during teh Uganda National Association of the Deaf celebration even of 50 years of existence. |
| Year(s) Of Engagement Activity | 2023 |
| URL | https://ubc.go.ug/2023/09/25/unad-celebrates-50-years-of-existence/ |