Disability Inclusion

Accessing Disabilities Library (ADLib)

Project Title

Nothing About Us Without Us: Co-producing inclusive data collections infrastructure with learning-disabled people

Project Aims

Nothing About Us Without us was a 1-year ESRC funded study designed to build sustainable data infrastructure to support researchers to be more able to meaningfully include learning-disabled children and young people in their research. We conducted a systematic review and an ethnographic study in a special school and, on the basis of the data, we co-produced a library of inclusive data collection tools with partners including staff and students in Applefields School; learning disabled and non learning-disabled researchers at Mencap; and a consultant speech and language therapist. 

ADLib is a prototype of an open-access, evidence-informed, and co-produced online library of data collection tools for - and guides to - conducting research with learning-disabled children and young people. Tools and guides are currently available in English, Mandarin, Spanish, and Hindi, and the platform includes a crowdsourcing feature that allows researchers from outside the team to contribute to the library’s development. 

Project Overview

Research Inclusion: Children and young people with learning disabilities

Learning-disabled people are often excluded from research, particularly those who communicate in non-traditional ways. This lack of inclusion is problematic, not just in a social and moral sense but in a legal sense too. However, designing truly inclusive research projects can be challenging, especially for researchers who do not have past experience of working with learning-disabled children and young people.

The ADLib team is passionate about amplifying the voices of learning disabled people in research  and we believe that by making adaptable tools and guides for researchers, more projects can be designed in inclusive and accessible ways. The team has built great relationships with Mencap and Applefields School, our study partners, and will continue to develop and expand the library in 2026.  We  hope that, via the crowdsourcing function, members of the community will help us to build ADLib into a fully open-source, community owned and managed international resource.

Team

The core ADLib team is based in the University of York's Department of Education: Kathryn Asbury (PI), Laura Fox (Co-I) and Kayleigh Doyle. Other key contributors include: Astrid Bowen, Emma Jackson and Ryann Sowden (UoY research staff); Fran Copping (Speech and Language Therapist); Mo Hakim, Elliot Negru, Dan Newton and Mary Peachey (Mencap researchers), Phil Harrison, Finn McLellan and Dave Shaw (UoY Research IT), staff and students at Applefields School.

From left to right: Kayleigh Doyle, Laura Fox, Kathryn Asbury.

Find out more on the study website: https://sites.google.com/york.ac.uk/adlib/

This study was funded by the Economic and Social Research Council (ESRC), grant number UKRI112

Designing Inclusion

Title

Designing Inclusion: Creative methods to include Persons with Disabilities within Health Research – NIHR Pre Doctoral Fellowship   [Start date: April 2026]

Fellowship candidate: Lois Armour

Lois is a Research Assistant in the Department of Health Sciences, University of York, where she has been a member of the Family Wellbeing Team since January 2022. She has since worked across a range of NIHR funded research projects. This includes a mixed-methods evaluation of a mental health navigator scheme to support people living in social housing; several projects looking at improving the mental and physical health of adults and families; and child development measure evaluations.

Research Inclusion: Persons with Disabilities as research participants and public contributors

Persons with Disabilities (PwD) are often significantly impacted by the health conditions that are researched, and policy decisions that are made, yet they remain underrepresented in health research – both as research participants and public contributors involved in designing and shaping research agendas and projects. This is due to barriers at a societal and system level. Inclusive research strategies and methods need to be incorporated into study design to increase the participation of PwD.

Fellowship aims

This fellowship investigates inclusive and creative qualitative methodologies as a pathway to research equity. By refining how we engage with the disabled population – who are frequently marginalised in health research – Lois will trial and engage in various inclusive creative methods as part of her training. She will recruit a PwD-led Community Engagement and Involvement (CEI) Group to test inclusive methods and ideologies to establish perspectives on the barriers and facilitators to engagement, both as participants and public contributors.

Research team

Lead supervisor support will be provided by Dr Sarah Blower, Associate Professor of Child Development and Family Wellbeing, Department of Health Sciences, University of York. Lois will also be supervised by Dr Kate Morton, Research Fellow, and Dr Suman Prinjha, Associate Professor, at the Department of Health Sciences, University of York. They will provide expertise in health inequalities, EDI, research inclusion, meaningful community engagement, and engaging with marginalised groups.

Funder information: This fellowship is funded by the National Institute for Health and Care Research (NIHR), NIHR500716

Deaf Health Inequalities

Project title

Giving Deaf people a voice: overcoming health inequalities in the Deaf community

What we’re doing

Deaf* people have poorer health than the general population. They are more likely to have diabetes, heart disease, and discover they have cancer at a late stage. Deaf people are more likely to have poor mental health.

There are lots of reasons why Deaf people have poorer health. Some do not visit their doctor when they need to because it is too hard. Deaf people do not always want family members to translate for them. In general, Deaf people do not read or understand science as well as people who can hear. This makes understanding written information like health advice leaflets difficult.

This study aims to form a partnership between the Deaf community, NHS and researchers. Two charities, Communication Unlimited and the Royal School for the Deaf Derby, will co-lead this work. This partnership will ask the Deaf community to talk about and list what areas of health care they want improving and to agree which areas are most important. This can then be used to shape future research.

* "Deaf" with a capital D refers to people who identify with the distinct cultural and linguistic group that uses British Sign Language (BSL) as their primary language, seeing their deafness as an identity rather than a disability.

How we’re doing it

This study will be done in three stages. Stage one will be forming the partnership and planning the priority setting meetings.

Stage two will be carrying out the priority setting meetings run by the charity partners. A first meeting where Deaf people will be asked to talk about and list all of the health care areas that they want to improve. A group will meet in Derby and a different group will meet online. A third group will be for young people aged 16-19 years. One single list of priorities will be produced. In a second round of meetings, deaf people will be asked to rank which priorities are most important.

A full search of the research will be carried out. This will be matched with the priority list and used to help develop future work.

Stage three will be to form small working partnerships of Deaf people, NHS and university researchers to develop new ideas, test solutions and seek funding to help do this.

Research inclusion: Health inequalities in the Deaf community

The study is co-designed with a Deaf steering group. They will advise on Deaf culture including appropriate terms to use and focus group structure.  A glossary of terms will be produced and signed in British Sign Language (BSL) to include people with lower health literacy.

There will be face to face and online focus groups, with an optional separate group for 16-19 year olds to aid inclusion. Focus groups will be held in Deaf accessible community buildings. Morning groups planned for after 10am to allow those travelling by bus to use their bus pass (avoiding communication with bus driver).

Recruitment videos will be recorded in BSL by Deaf steering group members and advertised on Deaf social media channels, charity partner client databases and Deaf networks.

To aid inclusion, any written material, including participant information sheets and consent forms, will be interpreted into BSL signed videos. The focus groups will be conducted in BSL with at least two BSL interpreters present. All BSL interpreters will be registered with the National Register of Communication Professionals working with Deaf and Deafblind People (NRCPD).

Team

The Deaf health inequalities team comprises academics, NHS workers and Deaf charity partners.

It is co-led by Dr Anna Selby (Royal Derby Hospital and visiting Senior Research Fellow, University of York), Mrs Alison Jones (CEO of Communication Unlimited Charity) and Ms Helen Radford (Royal School for the Deaf Derby). Academic support is from Prof Andrew Booth (University of Sheffield) and Dr Daniel Hind (University of Leeds).

Find out more about the study and how to include Deaf people in research: contact Anna Selby (anna.selby@nhs.net)

Funder information

This study is funded by the National Institute for Health and Care Research (NIHR), programme development grant - Developing Innovative, Inclusive and Diverse Public Partnerships Call (NIHR207088).

The INTERACT Trial

Project title

Intensive Interaction for children and young people with profound and multiple learning disabilities: The INTERACT trial

What we do

INTERACT is an NIHR-funded 52-month cluster-randomised controlled trial that aims to evaluate the effectiveness and cost-effectiveness of Intensive Interaction (II) to improve the communication skills of children and young people with profound and multiple learning disabilities (PMLD).  

Over 10,000 children and young people in England have PMLD, all have multiple disabilities, the most significant being profound intellectual disability and great difficulty communicating.

Intensive Interaction teaches communication skills and works on early interaction abilities, how to enjoy being with other people, to relate, interact, know, understand and practise communication routines. Intensive Interaction is widely used but currently lacks robust evidence for children and young people with PMLD in educational settings. In our trial, we provide structured training in II to educational setting staff and parents/carers with coordinated activities developed jointly for each child/young person to be delivered within the educational setting and at home.

How we’re doing it

We have recruited 67 educational settings and 328 children and young people and their families from England and Wales. Settings were randomly allocated to receive training and deliver II or continue care and education as usual. We are assessing a range of outcomes at baseline and at 32- and 52- weeks post-randomisation. The primary outcome is communication skills measured using the Communication Complexity Scale. We also look at other outcomes such as quality of life, behaviour, resource use, and parent/carer wellbeing.

Research inclusion: Children and young people with profound and multiple learning disabilities

Children and young people with PMLD are an underserved group. We have an active Research Advisory Group (PPIE) including key stakeholders such as parent/carers of children with PMLD, health and educational professionals who have been involved in all aspects of the research from conception.

Ahead of recruitment, the team collated the most recent educational setting level data from multiple national sources to identify educational settings with 5 or more children and young people with PMLD, alongside the index of multiple deprivation and income deprivation affecting children index and ethnicity. These data were linked and combined to identify target educational settings to ensure recruitment from geographic populations with high ill-health and socio-economic burden, which have been under researched in this field.

Team

The INTERACT team comprises researchers from University of York: Professor Catherine Hewitt, Dr Kerry Bell, Dr Katie Whiteside, Dr Jane Blackwell, Imogen Fountain, Katie Carlisle, Kalpita Baird, Charlie Peck, Dr Han-I Wang, Professor Joy Adamson, Dr Lyn Robinson-Smith, Emma Standley; University of Birmingham/University of Kent: Professor Jill Bradshaw, Dr Nick Gore, Joanne Sweeney; University of Sheffield: Professor Judy Clegg, Dr Sara Lavaggi, Dr Aydan Suphi, Vicki Roberts; Newcastle University: Professor Lindsay Pennington; Bangor University: Dr Fliss Kyffin; PAMIS: Jenny Miller; and the Council for Disabled Children: Amanda Allard, Ruby St. Leger. Lucy Ziegler is a co-applicant and parent of a child with PMLD.

The study Chief Investigators are Professor Jill Bradshaw and Professor Catherine Hewitt.

 Find out more on the study website: www.interacttrial.com

This trial is funded by the National Institute for Health and Care Research (NIHR) Health Technology Assessment (HTA) Programme: NIHR151428