Learning Disabilities Research Group

The Learning Disability Research Group* conducts research related to the health and social care needs of people with learning disabilities (or intellectual disabilities, as it is known outside the UK).

The group, also known as the Yellow Tulip Group, is chaired jointly by faculty members Irene Tuffrey-Wijne (Professor of Intellectual Disability and Palliative Care) and Richard Keagan-Bull (Researcher) who has learning disabilities.

Outside the UK, learning disabilities is known as intellectual disabilities.

Contact us

Irene Tuffrey-Wijne
I.Tuffrey-Wijne@kingston.ac.uk

Twitter: @TuffreyWijne

Research that matters

We are interested in doing research that matters to people with learning disabilities, related to health and social care needs. We think that research should include people with learning disabilities.

The Learning Disability Research Group shares experiences and ideas about:

  • Research we have done
  • Research we want to do
  • How we can do research together with people with learning disabilities.

The purpose of this group is to share ideas, learn from each other, and support each other in doing inclusive research with people with learning disabilities. We do this during regular lunchtime meetings (usually the fourth Tuesday of the month at 1pm), where we help and encourage everyone to share academic work and ideas in an accessible format, so group members with learning disabilities can join in with the discussions.

Our research interests are wide-ranging, but we have particular expertise in research around dying, death and bereavement; life transitions; and communication.

We believe that research concerned with the lives of people with learning disabilities must be relevant to them and to their families and carers. The group includes highly experienced senior researchers as well as junior researchers and students. Crucially, it also includes researchers and research advisers who have learning disabilities themselves.

Public and Patient Involvement (PPI) is fundamental to the work of this group, and we hold considerable expertise in this area. Along with the Mental Health Research Group, our group is closely aligned with the Centre for Public Engagement, which supports and champions meaningful involvement in research of people with disabilities, mental health problems, patients and carers.

We have collaborative links with local, national and international organisations including service providers, other academic institutions, and professional networks. One example is the close collaboration with the Palliative Care for People With Learning Disabilities (PCPLD) Network, whose popular webinar and podcast series are hosted by our Faculty.

We want to nurture the future generation of researchers, and welcome inquiries and applications from prospective PhD students.

What we offer

The Learning Disability Research Group offers:

  • High quality research projects of national and international relevance
  • Access to expertise in conducting learning disability research, both at the Faculty and through collaboration with other universities
  • Access to expertise in conducting inclusive research with people with learning disabilities
  • Sharing of research ideas, questions and experience
  • Monthly meetings
  • Occasional research webinars
  • PhD supervision
  • Support for the Learning Disability Nursing course at Kingston University
  • Research training for people with learning disabilities

Members

Leads

Members

  • Dr Becky Anderson, Research Associate, Centre for Health and Social Care Research
  • Richard Keagan, Bull, Research Assistant, HSSCE
  • Jonathon Ding, Research Assistant, HSSCE
  • Amanda Cresswell, Research Assistant, HSSCE
  • Leon Jordan, Research Assistant, HSSCE
  • Sarah Gibson, Research Associate, HSSCE
  • Andrea Bruun, Research Associate, HSSCE
  • Jo Giles, Research Assistant, HSSCE
  • Tasha Marsland, Research Assistant, HSSC
  • Sarah Helton, PhD student

Mencap London Research Team

  • Mo Hakim
  • Dan Newton
  • Bernie Conway
  • Carla Barrett

Webinars

Explore the Palliative Care for People with Learning Disabilities webinars, produced in collaboration with the PCPLD Network.

Research students

Sarah Helton

  • Project title: How to ‘talk' about death, bereavement and grief with children/young people with intellectual disabilities - with particular reference to those who are non and pre-verbal
  • Supervisors: Professors Irene Tuffrey-Wijne and Jayne Price

Join us

Anyone with an interest in learning disabilities research is invited to join our meetings.

Please email Irene at I.Tuffrey-Wijne@kingston.ac.uk for more information.

The following are especially welcome and encouraged to join:

  • Researchers and research advisors with learning disabilities (and their support workers)
  • Kingston University students – including all learning disability nursing students

Meetings

  • Tuesdays, 12.00 – 13.00

Meetings are an informal mixture of presentations, questions and answers (led by the chairs), and discussion.

Meetings will be held on Zoom. Everyone is encouraged to keep their camera on and contribute.

Projects

The Victoria and Stuart Project: Co-designing a toolkit of approaches and resources for end-of-life care planning (EOLCP) with people with learning disabilities within social care settings

  • Chief investigators: Professor Irene Tuffrey-Wijne and Dr Becky Anderson (Kingston University)
  • Lead organisations: Kingston University
  • Collaborators: MacIntyre, Dimensions, Open University, Voluntary Organisations Disability Group (VODG), The Mary Stevens Hospice
  • Topic: End of life care planning with people with learning disabilities
  • Dates: 2022-2024
  • Funder: NIHR-RfSC (NIHR202963
  • Website: victoriaandstuart.com
  • Value of award: £401,993

The Victoria and Stuart Project is about finding the best ways to help people with learning disabilities plan for the end of their life. We want to make sure that people with learning disabilities get the right care and support when they are ill and going to die. We are working with a wide range of people and organisations to try and get this right.

The study includes a literature reviews, focus group discussions, a co-design group (using Experience Based Co-Design) to produce a toolkit of guidance and resources, and a period of trialling the toolkit within learning disability services. There is a strong emphasis on engagement with people with learning disabilities, families, learning disability services, palliative care services and policy makers, with regular blogs, webinar and social media outputs (see our project website).

 

Staying Alive and Well: Learning from lives and deaths of people with learning disabilities and autistic people (LeDeR)

  • Chief investigator: Professor Andre Strydom (King's College London)
  • Lead organisation: King's College London
  • Principal Investigators at KU: Professor Irene Tuffrey-Wijne and Richard Keagan-Bull
  • Collaborators: University of Central Lancaster, Foundations for People with Learning Disabilities, Pathway Associates, Estia Centre
  • Topic: Reviewing deaths of people with learning disabilities in England
  • Dates: 2022–ongoing
  • Funder: NHS England and NHS Improvement
  • Website: kcl.ac.uk/research/lederU
  • Value of award at KU: £10,200 per year

LeDeR summarises the lives and deaths of people with learning disabilities and autistic people in annual reports, produced by King's College London (3,000+ deaths per years). The Staying Alive and Well Group is the co-production group for this project. It is a group of people with learning disabilities, their supporter and the project leads at KU. Their task is to make the annual reports accessible for people with learning disabilities and contributes to "deep dives" for the LeDeR programme.

Growing Older, Planning Ahead: Improving the support for older people with learning disabilities and behaviours that challenge, family and professional carers, and end of life care planning for carers. Work Package 4: co-producing a family-based support programme

  • Chief investigators: Professor Sara Ryan (University of Oxford) and Professor Louise Wallace (Open University).
  • Lead organisation: University of Oxford
  • PI at KU: Professor Irene Tuffrey-Wijne
  • Collaborators: Oxford University, Open University, University of Manchester, Lancaster University, British Association of Social Workers, My Life My Choice, Oxford Family Support Network, Future Directions CIC
  • Topic: Transition, challenging behaviour, end-of-life care planning, older people with learning disabilities, families.
  • Dates: 2020-2023
  • Funder: NIHR-HSDR (NIHR129491)
  • Website: wels.open.ac.uk/research/growing-older-planning-ahead
  • Value of award at KU: £233,710

This study aims to improve support for family and professional carers and older people with learning disabilities with behaviours that challenge others. The study will involve rapid scoping reviews, ethnographic case studies, and the development and qualitative evaluation of decision aid tools to support future planning and end of life care discussions. It will co-produce actionable recommendations for commissioners and providers; resources and decision-aids for family carers and people with learning disabilities with behaviours that challenge others; and free online training materials about caring in later life for the public and for professionals.

More about the project: Improving the support for older people with learning disabilities and behaviours that challenge, family and professional carers, and supporting end of life care planning for carers.

Research Training Skills Course for People with Learning Disabilities

  • PI: Professor Irene Tuffrey-Wijne
  • Lead organisation: Kingston University and St George's University
  • Topic: Research, training, learning disabilities
  • Dates: 2019 (6 months)
  • Funder: NIHR Innovations Small Grants Scheme
  • Value of award at KU: £2,990

A hugely successful project which involved developing and delivering an 8-week research training course for 10 people with learning (intellectual) disabilities.

More about the project:

Shared decision-making in the palliative phase with people with intellectual disabilities

  • Chief investigator: Dr I.J. Korfage
  • Lead organisation: Erasmus MC (University Medical Centre Rotterdam, Netherlands)
  • PI at KU: Professor Irene Tuffrey-Wijne
  • Collaborators: Erasmus MC (University Medical Centre Rotterdam, Netherlands), Kingston University and St George's University,
  • Topic: Shared decision making, end of life care, learning disabilities
  • Dates: 2018-2021
  • Funder: ZonMW
  • Value of award at KU: £8,164

This study is an evaluation of an existing collaborative decision-making tool that was adapted for use with people with learning disabilities. The evaluation was conducted in 20 residential facilities and 128 relatives of participating clients. The project is also developing training for healthcare workers who will be working with this tool.

More about the project: Gezamenlijke besluitvorming in de palliatieve fase met mensen met een verstandelijke beperking

Pay more attention: A national mixed methods study to identify the barriers and facilitators to ensuring equal access to high quality hospital care and services for children and young people with learning disability and their families

  • Chief investigator: Dr Kate Oulton
  • Lead: organisation Great Ormond Street Hospital
  • PI at KU: Professor Irene Tuffrey-Wijne
  • Collaborators: Great Ormond Street Hospital, Kingston & St George's University, University College London
  • Topic: Patient safety, acute hospitals, children with learning disabilities
  • Dates: 2015-2019 (30 months)
  • Funder: NIHR-HSDR
  • Value of award at KU: £8,395

This mixed methods study aimed to identify the barriers and facilitators to ensuring equal access to high quality hospital care and services for children and young people with and without learning disability and their families. Prioritising the voices of children and young people and their parents in specialist and non-specialist hospitals in England, the project seeks to help drive support for change.

More about the project: Pay More Attention: A national mixed methods study to identify the barriers and facilitators to ensuring equal access to high quality hospital care and services for children and young people with and without learning disability and their families

The Talking About Dying Survey

  • Chief investigator: Professor Irene Tuffrey-Wijne
  • Lead organisation: Kingston University and St George's University
  • Collaborators: University of South Wales, University of Ulster, Glasgow Caledonian University
  • Topic: Communication, breaking bad news, death & dying, learning disability
  • Dates: 2016-2017 (18 months)
  • Funder: Baily Thomas Charitable Fund
  • Value of award at KU: £61,064

This study was a UK-wide survey investigating the experiences of staff talking to people with learning disabilities about death, dying and bereavement. Around 700 staff working with people with learning disabilities in residential and supported living services in the UK took part in the survey during 2017 and 2018.

More about the project: What is the Talking About Dying Survey?

Investigating the factors that affect the communication of death-related bad news to people with learning disabilities by social and health care staff

  • PI: Professor Irene Tuffrey-Wijne
  • Lead organisation: Kingston University and St George's University
  • Topic: Communication, breaking bad news, learning disability
  • Funder: South West London Academic, Health and Social Care System
  • Dates: 2015 (6 months)
  • Value of award at KU: £9,983

The aims of this qualitative study were twofold: first, to gain further insight into the individual, organisational and contextual factors that affect the communication of death-related bad news to people with intellectual disabilities by intellectual disability staff; and secondly, to develop guidelines for services to enable appropriate communication with clients about death and dying. Data was collected through semi-structured interviews with 20 social care staff working in intellectual disability residential or supported living services in London, and who had supported a client affected by death-related bad news in the previous 6 months.

More about the project: Investigating the factors that affect the communication of death-related bad news to people with intellectual disabilities by staff in residential and supported living services: An interview study

Publications and books

For publications by members of the Learning Disabilities Research Group please see each member's KU profile.

Faculty of Health, Science, Social Care and Education