The KIND Research Group (Intellectual Disability Research)

• Professor Irene Tuffrey-Wijne (CHAIR)

• Dr Becky Anderson-Kittow, Research Fellow, Centre for Health and Social Care Research
• Dr Andrea Bruun, Research Fellow, HSSCE
• Christina Roberts, Research Fellow, HSSCE
• Jonathon Ding, Research Associate, HSSCE
• Fred Inglis, Research Associate, HSSCE
• Richard Keagan, Bull, Research Assistant, HSSCE
• Jo Giles, Support Research Assistant, HSSCE
• Amanda Cresswell, Research Assistant, HSSCE
• Mo Hakim, Research Assistant, HSSCE
• Sunny Sokhal, Research Assistant, HSSCE
• Andrew Priest, Support Research Assistant, HSSCE
• Sarah Helton, PhD student

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

DAPPLE stands for: Developing effective service models for Adult Palliative and end of life care for People with a LEarning disability. The study aims to discover the best ways to make sure people with a learning disability get the best care at the end of their lives. Study methods include a scoping review, ethnography, experience-based co-design and national database analysis. 

• Study leads: Professor Irene Tuffrey-Wijne and Dr Becky Anderson-Kittow. 
• Partner organisations: The Open University, University of Leicester and LOROS Hospice.
• Funder: NIHR (NIHR159160), £1,961,343

READY stands for: REcognising Approaching Dying. This study aims to explore what can help healthcare professionals and carers anticipate a need for palliative and end of life care in people with a learning disability where cancer or dementia are not implicated.

• Study lead: Professor Stuart Todd (University of South Wales). Kingston University (Professor Irene Tuffrey-Wijne) leads the co-production arm of the study.
• Partner organisations: University of South Wales and University of Southampton.
• Funder: Marie Curie, £148,606 (Kingston University: £42,460)

We are part of a consortium led by King's College London. We are commissioned by NHS England to support the National Learning Disability and Autism Programme. This involves analysing the data of the Learning from Deaths of People with a Learning Disability (LeDeR) programme, which reviews deaths of people with a learning disability, looks at their life and the health and social care services they received. Professor Irene Tuffrey-Wijne and Richard Keagan-Bull lead the co-production arm of this consortium, producing accessible versions of the annual LeDeR report. They set up the Staying Alive and Well Group of people with a learning disability.

PallComm is a small-scale pilot study assessing the feasibility and acceptability of conducting a conversation analysis study involving video-recording palliative care conversations between people with a learning disability and professionals.

• Study lead: Dr Andrea Bruun
• Funder: Kingston University, £7,590

The Victoria & Stuart Project was a study to co-design a toolkit of resources (freely available on the project website), together with people with a learning disability, families, learning disability support staff and healthcare professionals.

• Study leads: Professor Irene Tuffrey-Wijne and Dr Becky Anderson-Kittow.
• Partner organisations: The Open University, MacIntyre, Dimensions UK, Voluntary Organisations Disability Group, The Mary Stevens Hospice.
• Funder: NIHR (NIHR202963), £454,297

This study aimed to help older people with a learning disability and their family carers plan better for the future. As part of the study, the Kingston University team worked together with families and people with a learning disability to develop resources for use by families, to help prepare for parental death and transitions in care.

• Project lead: Professor Sara Ryan (Manchester Metropolitan University).
• Kingston University lead: Professor Irene Tuffrey-Wijne.
• Partner organisations: Manchester Metropolitan University, The Open University, British Association of Social Workers, My Life My Choice, Oxford Family Support Network, Nuffield Department of Primary Care Health Services.
• Funder: NIHR (NIHR129491), £896,911 (Kingston University: £233,607)

This online group, led by the Kingston University Learning Disability Research Group, meets monthly (usually the last Tuesday of the month, 12.00–13.00). Its purpose is to share ideas and experiences of doing health and social care research inclusively with people with a learning disability. The meetings are relaxed, informal, and open to anyone who is interested. People with a learning disability are particularly welcome. If you are interested, please email Jonny Ding.

This is a group of researchers who are specialised in the methods of Conversation Analysis and working within the learning disability research field. They learn more about how we interact with each other by looking at video-recordings featuring people with learning disabilities, their families, and staff.

The group meets monthly on Teams for Conversation Analysis data sessions where they discuss and analyse recordings together.

Members:

• Dr Andrea Bruun, Kingston University London, UK
• Emeritus Professor Charles Antaki, Loughborough University, UK
• Dr Deborah Chinn, King's College London, UK
• Dr Joe Webb, University of Bristol, UK
• Dr Clare Nicholson, St Marys University, UK
• Professor Mick Finlay, Anglia Ruskin University, UK
• Dr Debbie Worrall, Inclusion Gloucestershire, UK
• Emeritus Professor Val Williams, University of Bristol, UK
• Dr Chris Walton, Lancaster University, UK
• Dr Leealaura Leskelä, Finnish Centre for Easy Language, Finland
• Dr Jessica La, King's College London, UK

Enquiries can be directed to Dr Andrea Bruun.