Professor Irene Tuffrey-Wijne

Faculty of Health, Science, Social Care and Education
Department of Public Health and Children's, Learning Disabilities and Mental Health Nursing
Centre for Health and Social Care Research
Kingston Hill

Professor of Intellectual Disability and Palliative Care

Email:: [email protected]

About

I hold the world’s first Chair of Intellectual Disability & Palliative Care. I lead Kingston University’s award-winning learning disability research group. I have led a programme of research development at St George’s University of London (2001-2012) Kingston University London (from 2013). I completed my PhD in 2007 at Maastricht University (Netherlands).

My research has focused on the experiences of people with a learning disability (internationally known as ‘intellectual disability’) around death and bereavement; communication and breaking bad news; and the provision of palliative care, including end-of-life care planning. Inclusion of people with a learning disability as study participants and as salaried researchers is a key part of our research, and developing inclusive research methods is one of our strengths. I have published widely and presented my work in the UK and across the world.

My background is in nursing. I qualified as a nurse in Amsterdam (The Netherlands) in 1985. I lived and worked in the L’Arche London Community for people with a learning disability between 1985 and 1993. I worked as a ward nurse and community nurse specialist at Trinity Hospice (Clapham) from 1993 to 2001.

I currently lead several projects, including the DAPPLE Project (NIHR159160), a national study on palliative and end of life care provision for people with an intellectual disability. She also leads the co-production element (involvement of people with an intellectual disability and autism) in the NHS England Learning Disability Mortality (death) Review (LeDeR) Programme.

See my website for more information about my work.

Qualifications

PhD (2007) Maastricht University, Netherlands
BSc Nursing Studies (First Class Honours) (1999) King's College London, UK
Diploma of Higher Education Nursing Studies (Palliative Care) with Distinction (1996), King's College London, UK
1985 HBO-V (Registered Nurse) Gijsbreght Academie (College of Nursing), Amsterdam, Netherlands

Domains

Publications

In a room or on Zoom?: Trying out an online research course for people with intellectual disabilities

Bruun, Andrea, Head, Dominic, Stewart, Ian, Stevenson, Isobel, Smith, Jordan, Kaur, Kiran, Winder, Lewis, Hakim, Mo, Southernwood, Renait, Priest, Andrew, Wainwright, Gerard, Jordan, Leon, Keagan-Bull, Richard, Giles, Jo and Tuffrey-Wijne, Irene, 2026, Journal of Intellectual Disabilities, E-pub ahead of print

Professor Irene Tuffrey-Wijne

Faculties, departments and locations

About

Qualifications

Domains

Research Open

Awards

Specialisms

Scholarly affiliations

Publications

Articles Open

In a room or on Zoom?: Trying out an online research course for people with intellectual disabilities

Using non‐standard research methods to explore the perspectives of people with intellectual disabilities on sensitive topics: a discussion of the research paradigm, data collection methods and data analysis

Getting it out there: reflections on the process and impact of public engagement activities in a study on end‐of‐life care planning with people with intellectual disabilities

Palliative and end-of-life care in people with and without intellectual disabilities in primary care: identification, survival time, and healthcare utilization

Exploring England’s palliative and end-of-life care systems for people with learning disabilities: the perspectives of senior health and social care professionals and commissioners

Don't assume, ask! A focus group study on end-of-life care planning with people with intellectual disabilities from minoritised ethnic groups

Evaluating a toolkit for end-of-life care planning with people with intellectual disabilities: an exploration of implementation outcomes within intellectual disability social care services

Developing service models for adult palliative and end of life care for people with a learning disability (The DAPPLE Project): protocol for a mixed-method study

Palliative care communication between patients with intellectual disabilities and hospice staff: a conversation analysis pilot study protocol

Co-designing a toolkit of approaches and resources for end-of-life care planning with people with intellectual disabilities within adult social care settings: a multi-phase study

Reflections on an evidence review process to inform the co-design of a toolkit for supporting end-of-life care planning with people with intellectual disabilities

The all together group: co-designing a toolkit of approaches and resources for end-of-life care planning with people with intellectual disabilities in social care settings

What are we planning, exactly? The perspectives of people with intellectual disabilities, their carers and professionals on end-of-life care planning: A focus group study

Co-designing resources to support older people with intellectual disabilities and their families plan for parental death and transitions in care

It is up to healthcare professionals to talk to us in a way that we can understand: informed consent processes in people with an intellectual disability

Being a child with intellectual disabilities in hospital: the need for an individualised approach to care

Behavioural sleep problems in children and adults with intellectual disabilities: an integrative literature review

Euthanasia and physician-assisted suicide in people with intellectual disabilities and/or autism spectrum disorders: investigation of 39 Dutch case reports (2012-2021)

Degree of autonomy in making independent choices by frail older people with intellectual disabilities in a care home: a descriptive ethnographic study

Top ten tips palliative care clinicians should know about navigating the needs of adults with intellectual disabilities

"My name on the door by the professor's name": the process of recruiting a researcher with a learning disability at a UK university

Equal access to hospital care for children with learning disabilities and their families: a mixed-methods study

Maximising engagement and participation of intellectual disability (ID) staff in research: insights from conducting a UK-wide survey

The impact of nutrition on sleep in people with an intellectual disability: an integrative literature review

Consensus on a conversation aid for shared decision making with people with intellectual disabilities in the palliative phase

Developing a training course to teach research skills to people with learning disabilities: "It gives us a voice. We CAN be researchers!"

Shared decision-making with people with intellectual disabilities in the last phase of life: a scoping review

Communicating about death and dying with adults with intellectual disabilities who are terminally ill or bereaved: a UK-wide survey of intellectual disability support staff

The palliative care needs of adults with intellectual disabilities and their access to palliative care services: a systematic review

To flag or not to flag: identification of children and young people with learning disabilities in English hospitals

"Because of his intellectual disability, he couldn't cope." Is euthanasia the answer?

Learning disability nurse provision in children's hospitals: hospital staff perceptions of whether it makes a difference

Excellence in palliative and end-of-life care provision for people with intellectual disability

Mapping staff perspectives towards the delivery of hospital care for children and young people with and without learning disabilities in England: a mixed methods national study

Euthanasia and assisted suicide for people with an intellectual disability and/or autism spectrum disorder: an examination of nine relevant euthanasia cases in the Netherlands (2012-2016)

Communicating about death and dying: developing training for staff working in services for people with intellectual disabilities

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

Do-Not-Attempt-Resuscitation orders for people with intellectual disabilities: dilemmas and uncertainties for ID physicians and trainees. The importance of the deliberation process

The benefits of gaining research experience through a secondment

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 disabilities and their families

Role confusion as a barrier to effective carer involvement for people with intellectual disabilities in acute hospitals: findings from a mixed-method study

Developing research, policy and practice in palliative care for people with intellectual disabilities will benefit everyone

Defining consensus norms for palliative care of people with intellectual disabilities in Europe, using Delphi methods: A White Paper from the European Association of Palliative Care (EAPC)

Developing research priorities for palliative care of people with intellectual disabilities in Europe: a consultation process using nominal group technique

Book review of: 'Peaceful, pain free and dignified: palliative and end of life care for people on the autism spectrum' by Jill Ferguson and Val Lauri

Palliative care for people with intellectual disabilities: the EAPC White Paper in a nutshell

End-of-life decision-making for people with intellectual disability from the perspective of nurses

Breaking bad news to people with learning disabilities and dementia

The challenges in monitoring and preventing patient safety incidents for people with intellectual disabilities in NHS acute hospitals: evidence from a mixed-methods study

The barriers to and enablers of providing reasonably adjusted health services to people with intellectual disabilities in acute hospitals: evidence from a mixed-methods study.

Authors' reply.

Improving hospital care for patients with intellectual disabilities.

Preventing 'deaths by indifference': identification of reasonable adjustments is key.

Identifying the factors affecting the implementation of strategies to promote a safer environment for patients with learning disabilities in NHS hospitals: a mixed-methods study

Meeting the needs of patients with learning disabilities

Developing guidelines for disclosure or non-disclosure of bad news around life-limiting illness and death to people with intellectual disabilities

The factors affecting end-of-life decision-making by physicians of patients with intellectual disabilities in the Netherlands: a qualitative study

End-of-life decisions for people with intellectual disabilities, an interview study with patient representatives

Palliative Care for People with Learning Disabilities Network

A new model for breaking bad news to people with intellectual disabilities

People with intellectual disabilities who are affected by a relative or friend with cancer: a qualitative study exploring experiences and support needs

Doing it together (DM Special Issue)

Practical approaches toward improving end-of-life care for people with intellectual disabilities: effectiveness and sustainability

Co-researching with people with learning disabilities: an experience of involvement in qualitative data analysis

Do you provide equal care to people with learning disabilities?

People with learning disabilities who have cancer: an ethnographic study

Books Open

Consensus norms for palliative care of people with intellectual disabilities in Europe: EAPC White Paper

Decision-making about the best place of palliative care for people with intellectual disabilities: a guide for care staff and healthcare professionals providing palliative care for people with intellectual disabilities