Professor Irene Tuffrey-Wijne

About

I hold the world's first Chair of Intellectual Disability & Palliative Care. I qualified as a nurse in Amsterdam before moving to London in 1985, where I lived and worked in the L'Arche Community for people with a learning disability (internationally known as "intellectual disability") until 1993. I worked as a ward nurse and community nurse specialist at Trinity Hospice (Clapham) from 1993 to 2001.

Since 2001, I have been at St George's University of London and later at Kingston University London, leading a programme of research and development focusing on learning disability, bereavement and palliative care. I completed my PhD in 2007 at Maastricht University (Netherlands). I have published widely, presented my work across the world, and am recognised as the leading international expert in the area of palliative care for people with an intellectual disability.

My research has focused on the experiences of people with learning disabilities around dying, death and bereavement; communication and breaking bad news to people with learning disabilities; 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 my work. For this, Kingston University won the "Employer of People with Disabilities" category in the 2023 National Learning Disability & Autism" awards. We host the "Yellow Tulip Group", an online learning disabilty research group.

I chair the Reference Group for Intellectual Disabilities of the European Association of Palliative Care, working with colleagues from across Europe. I won the 2017 EAPC Post-Doctoral Research Award and has been named "Pioneering Nurse" in the St Christopher's 2020 Palliative Nursing awards. I am founding trustee of the UK based (but international) Palliative Care of People with Learning Disabilities Network (www.pcpld.org), which I chaired until 2020.

Academic responsibilities

Professor of Intellectual Disability and Palliative Care

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

Research

Qualitative and mixed-method research methodologies

Principal Investigator on a range of projects.For a full overview of projects and publications, go to: https://www.tuffrey-wijne.com

Grant providers include:

  • Cancer Research UK (2004)
  • BUPA Foundation (2009)
  • Macmillan Cancer Relief (2009)
  • NIHR-SDO (2011)
  • Bailey Thomas Charitable Fund (2016)
  • NIHR-HSDR (2020)
  • NIHR-RfSC (2022)

Awards

  • Employer Award (Kingston University) 2023, National Learning Disability & Autism Awards
  • Best Poster, European Association of Palliative Care World Congress 2023
  • Pioneering Nurse Award 2020, St Christopher's Hospice
  • Postdoctoral Research Award 2017, European Association of Palliative Care
  • RCN Research Society Akinsanya Award 2009 (Special Commendation) For innovation in doctoral nursing research
  • Best Poster Award, 9th Conference for Clinical Ethic Committees, Oxford, 2009
  • Best Poster Prize, European Congress of the International Association for the Scientific Study of Intellectual Disabilities, 2006
  • First Prize, Macmillan Cancer Relief/International Journal of Palliative Nursing Awards 2005, ‘Educationalist of the year'

Areas of specialism

  • Learning disability (intellectual disability)
  • Palliative Care
  • Death/dying/bereavement
  • Inclusive research methodologies
  • Qualitative research

Scholarly affiliations

  • Maastricht University, Netherlands

Research student supervision

Publications

Number of items: 62.

Article

Anderson, Rebecca, Keagan-Bull, Richard, Giles, Jo and Tuffrey-Wijne, Irene (2024) Co‐designing resources to support older people with intellectual disabilities and their families plan for parental death and transitions in care. Health Expectations, 27(2), ISSN (print) 1369-6513

Ding, Jonathon, Keagan-Bull, Richard and Tuffrey-Wijne, Irene (2024) 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. BMJ Quality & Safety, ISSN (print) 2044-5415 (Epub Ahead of Print)

Oulton, Kate, Gibson, Faith, Kenten, Charlotte, Russell, Jessica, Carr, Lucinda, Hassiotis, Angela, Kelly, Paula, Kerry, Sam, Tuffrey-Wijne, Irene, Whiting, Mark and Wray, Jo (2023) Being a child with intellectual disabilities in hospital : the need for an individualised approach to care. Journal of Applied Research in Intellectual Disabilities, ISSN (print) 1360-2322 (Epub Ahead of Print)

Harper, Lynette, McAnelly, Su, Walshe, Ian, Ooms, Ann and Tuffrey-Wijne, Irene M. (2023) Behavioural sleep problems in children and adults with intellectual disabilities : an integrative literature review. Journal of Applied Research in Intellectual Disabilities, ISSN (print) 1360-2322 (Epub Ahead of Print)

Tuffrey-Wijne, Irene, Curfs, Leopold, Hollins, Sheila and Finlay, Ilora (2023) Euthanasia and physician-assisted suicide in people with intellectual disabilities and/or autism spectrum disorders : investigation of 39 Dutch case reports (2012-2021). BJPsych Open, 9(3), e87. ISSN (online) 2056-4724

Noorlandt, Hanna W., Korfage, Ida J., van der Sar, Lisa J., Felet, Freek M. A. J., Tuffrey-Wijne, Irene, van der Heide, Agnes and Echteld, Michael A. (2023) Degree of autonomy in making independent choices by frail older people with intellectual disabilities in a care home : a descriptive ethnographic study. Journal of Applied Research in Intellectual Disabilities, ISSN (print) 1360-2322 (Epub Ahead of Print)

Moore, Caitlyn M., Pan, Cynthia X., Roseman, Karin, Stephens, Mary M., Bien-Aime, Casey, Morgan, Ann C., Ross, Wendy, Castillo, Matthew C., Palathra, Brigit C., Jones, Christopher A., Ailey, Sarah, Tuffrey-Wijne, Irene, Smeltzer, Suzanne C. and Tobias, Jane (2022) Top ten tips palliative care clinicians should know about navigating the needs of adults with intellectual disabilities. Journal of Palliative Medicine, 25(12), pp. 1857-1864. ISSN (print) 1096-6218

Anderson, Rebecca J., Keagan-Bull, Richard, Giles, Jo and Tuffrey-Wijne, Irene (2022) "My name on the door by the professor’s name" : the process of recruiting a researcher with a learning disability at a UK university. British Journal of Learning Disabilities, ISSN (print) 1354-4187 (Epub Ahead of Print)

Oulton, Kate, Wray, Jo, Kenten, Charlotte, Russell, Jessica, Carr, Lucinda, Hassiotis, Angela, Jewitt, Carey, Kelly, Paula, Kerry, Sam, Tuffrey-Wijne, Irene, Whiting, Mark and Gibson, Faith (2022) Equal access to hospital care for children with learning disabilities and their families : a mixed-methods study. Health and Social Care Delivery Research, 10(13), ISSN (print) 2755-0060

Harper, Lynette, Ooms, Ann and Tuffrey-Wijne, Irene (2021) The impact of nutrition on sleep in people with an intellectual disability : an integrative literature review. Journal of Applied Research in Intellectual Disabilities, 34(6), pp. 1393-1407. ISSN (print) 1360-2322

Noorlandt, Hanna W., Korfage, Ida J., Tuffrey-Wijne, Irene, Festen, Dederieke, Vrijmoeth, Cis, van der Heide, Agnes and Echteld, Michael (2021) Consensus on a conversation aid for shared decision making with people with intellectual disabilities in the palliative phase. Journal of Applied Research in Intellectual Disabilities, ISSN (print) 1468-3148

Tuffrey-Wijne, Irene, Lam, Claire Kar Kei, Marsden, Daniel, Conway, Bernie, Harris, Claire, Jeffrey, David, Jordan, Leon, Keagen-Bull, Richard, McDermott, Michelle, Newton, Dan and Stapelberg, Diane (2020) Developing a training course to teach research skills to people with learning disabilities : "It gives us a voice. We CAN be researchers!". British Journal of Learning Disabilities, 48(4), pp. 301-314. ISSN (print) 1354-4187

Noorlandt, H. W., Echteld, M. A., Tuffrey-Wijne, I., Festen, D. A. M., Vrijmoeth, C., van der Heide, A. and Korfage, I. J. (2020) Shared decision-making with people with intellectual disabilities in the last phase of life : a scoping review. Journal of Intellectual Disability Research, 64(11), pp. 881-894. ISSN (print) 0964-2633

Tuffrey-Wijne, Irene, Finlayson, Janet, Bernal, Jane, Taggart, Laurence, Lam, Claire Kar Kei and Todd, Stuart (2020) 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. Journal of Applied Research in Intellectual Disabilities, 33(5), pp. 927-938. ISSN (print) 1360-2322

Adam, Emily, Sleeman, Katherine E, Brearley, Sarah, Hunt, Katherine and Tuffrey-Wijne, Irene (2020) The palliative care needs of adults with intellectual disabilities and their access to palliative care services : a systematic review. Palliative Medicine, 34(8), pp. 1006-1018. ISSN (print) 0269-2163

Lam, Claire Kar Kei, Bernal, Jane, Finlayson, Janet, Todd, Stuart, Taggart, Laurence, Boaz, Annette and Tuffrey-Wijne, Irene (2020) Maximising engagement and participation of intellectual disability (ID) staff in research : insights from conducting a UK-wide survey. Journal of Intellectual Disabilities, ISSN (print) 1744-6295 (Epub Ahead of Print)

Kenten, Charlotte, Wray, Jo, Gibson, Faith, Russell, Jessica, Tuffrey-Wijne, Irene and Oulton, Kate (2019) To flag or not to flag : identification of children and young people with learning disabilities in English hospitals. Journal of Applied Research In Intellectual Disabilities, 32(5), pp. 1176-1183. ISSN (print) 1360-2322

Tuffrey-Wijne, Irene, Curfs, Leopold, Finlay, Ilora and Hollins, Sheila (2019) "Because of his intellectual disability, he couldn't cope." Is euthanasia the answer? Journal of Policy and Practice in Intellectual Disabilities, 16(2), pp. 113-116. ISSN (print) 1741-1122

Oulton, Kate, Wray, Jo, Hassiotis, Angela, Kenten, Charlotte, Russell, Jessica, Tuffrey-Wijne, Irene, Whiting, Mark and Gibson, Faith (2019) Learning disability nurse provision in children's hospitals : hospital staff perceptions of whether it makes a difference. BMC Pediatrics, 19(192), ISSN (online) 1471-2431

Tuffrey-Wijne, Irene and Davidson, Jason (2018) Excellence in palliative and end-of-life care provision for people with intellectual disability. International Journal of Palliative Nursing, 24(12), pp. 598-610. ISSN (print) 1357-6321

Oulton, Kate, Gibson, Faith, Carr, Lucinda, Hassiotis, Angela, Jewitt, Carey, Kenten, Charlotte, Russell, Jessica, Whiting, Mark, Tuffrey-Wijne, Irene and Wray, Jo (2018) 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. BMC Health Services Research, 18(203), ISSN (online) 1472-6963

Tuffrey-Wijne, Irene, Curfs, Leopold, Finlay, Ilora and Hollins, Sheila (2018) 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). BMC Medical Ethics, 19(17), ISSN (online) 1472-6939

Tuffrey-Wijne, Irene, Rose, Tracey, Grant, Robert and Wijne, Astrid (2017) Communicating about death and dying : developing training for staff working in services for people with intellectual disabilities. Journal Of Applied Research In Intellectual Disabilities, 30(6), pp. 1099-1110. ISSN (print) 1360-2322

Tuffrey-Wijne, I. and Rose, T. (2017) 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. Journal Of Intellectual Disability Research, 61(8), pp. 727-736. ISSN (print) 0964-2633

Wagemans, A. M. A., van Schrojenstein Lantman-de Valk, H. M. J., Proot, I. M., Bressers, A. M., Metsemakers, J., Tuffrey-Wijne, I., Groot, M. and Curfs, L. M. G. (2017) Do-Not-Attempt-Resuscitation orders for people with intellectual disabilities : dilemmas and uncertainties for ID physicians and trainees. The importance of the deliberation process. Journal Of Intellectual Disability Research, 61(3), pp. 245-254. ISSN (print) 0964-2633

Rose, Tracey and Tuffrey-Wijne, Irene (2017) The benefits of gaining research experience through a secondment. Learning Disability Practice, 20(1), pp. 36-39. ISSN (print) 1465-8712

Oulton, Kate, Wray, Jo, Carr, Lucinda, Hassiotis, Angela, Jewitt, Carey, Kerry, Sam, Tuffrey-Wijne, Irene and Gibson, Faith (2016) 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. BMJ Open, 6, e012333. ISSN (online) 2044-6055

Tuffrey-Wijne, Irene, Abraham, Elisabeth, Goulding, Lucy, Giatras, Nikoletta, Edwards, Christine, Gillard, Steve and Hollins, Sheila (2016) Role confusion as a barrier to effective carer involvement for people with intellectual disabilities in acute hospitals : findings from a mixed-method study. Journal of Advanced Nursing, 72(11), pp. 2907-2922. ISSN (print) 0309-2402

Tuffrey-Wijne, Irene, Curfs, Leopold and Deliens, Luc (2016) Developing research, policy and practice in palliative care for people with intellectual disabilities will benefit everyone. Palliative Medicine, 30(7), pp. 613-615. ISSN (print) 0269-2163

Tuffrey-Wijne, I, McLaughlin, D, Curfs, L, Dusart, A, Hoenger, C, McEnhill, L, Read, S, Ryan, K, Satge, D, Strasser, B, Westergard, B and Oliver, D (2016) 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). Palliative Medicine, 30(5), pp. 446-455. ISSN (print) 0269-2163

Tuffrey-Wijne, Irene, Wicki, Monika, Heslop, Pauline, McCarron, Mary, Todd, Stuart, Oliver, David, De Veer, Anke, Ahlstrohm, Gerd, Schaper, Sabine, Hynes, Geraldyn, O'Farrell, Janet, Adler, Judith, Riese, Frederik and Curfs, Leopold (2016) Developing research priorities for palliative care of people with intellectual disabilities in Europe : a consultation process using nominal group technique. BMC Palliative Care, 15(36), ISSN (online) 1472-684X

Tuffrey-Wijne, Irene [Reviewer] (2016) 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. eHospice: Palliative Care News, Views and Inspiration from around the World,

Tuffrey-Wijne, Irene (2016) Palliative care for people with intellectual disabilities : the EAPC White Paper in a nutshell. European Journal of Palliative Care, 23(1), pp. 45-47. ISSN (print) 1352-2779

Wagemans, A. M. A., van Schrojenstein Lantman-de Valk, H. M. J., Proot, I. M., Metsemaker, J., Tuffrey-Wijne, I. and Curfs, L. M. G. (2015) End-of-life decision-making for people with intellectual disability from the perspective of nurses. Journal Of Policy And Practice In Intellectual Disabilities, 12(4), pp. 294-302. ISSN (print) 1741-1122

Tuffrey-Wijne, Irene and Watchman, Karen (2015) Breaking bad news to people with learning disabilities and dementia. Learning Disability Practice, 18(7), pp. 16-23. ISSN (print) 1465-8712

Tuffrey-Wijne, Irene, Goulding, Lucy, Gordon, Vanessa, Abraham, Elisabeth, Giatras, Nikoletta, Edwards, Christine, Gillard, Steve and Hollins, Sheila (2014) The challenges in monitoring and preventing patient safety incidents for people with intellectual disabilities in NHS acute hospitals : evidence from a mixed-methods study. BMC Health Services Research, 14(432), ISSN (online) 1472-6963

Tuffrey-Wijne, Irene, Goulding, Lucy, Giatras, Nikoletta, Abraham, Elisabeth, Gillard, Steve, White, Sarah, Edwards, Christine and Hollins, Sheila (2014) 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. BMJ Open, 4(4), e004606. ISSN (online) 2044-6055

Hollins, Sheila and Tuffrey-Wijne, Irene (2014) Authors' reply. British Journal of Psychiatry, 205(5), p. 412. ISSN (print) 0007-1250

Hollins, Sheila and Tuffrey-Wijne, Irene (2014) Improving hospital care for patients with intellectual disabilities. British Journal of Hospital Medicine, 75(6), pp. 304-305. ISSN (print) 1750-8460

Tuffrey-Wijne, Irene and Hollins, Sheila (2014) Preventing 'deaths by indifference': identification of reasonable adjustments is key. British Journal of Psychiatry, 205(2), pp. 86-87. ISSN (print) 0007-1250

Tuffrey-Wijne, I., Giatras, N., Goulding, L., Abraham, E., Fenwick, L., Edwards, C. and Hollins, S. (2013) 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. Health Services and Delivery Research, 1(13), ISSN (print) 2050-4349

Hollins, S. and Tuffrey-Wijne, I. (2013) Meeting the needs of patients with learning disabilities. BMJ, 346(f3421), ISSN (online) 1756-1833

Tuffrey-Wijne, Irene, Giatras, Nikoletta, Butler, Gary, Cresswell, Amanda, Manners, Paula and Bernal, Jane (2013) Developing guidelines for disclosure or non-disclosure of bad news around life-limiting illness and death to people with intellectual disabilities. Journal Of Applied Research In Intellectual Disabilities, 26(3), pp. 231-242. ISSN (print) 1360-2322

Wagemans, A., van Schrojenstein Lantman-de Valk, H., Proot, I., Metsemakers, J., Tuffrey-Wijne, I. and Curfs, L. (2013) The factors affecting end-of-life decision-making by physicians of patients with intellectual disabilities in the Netherlands: a qualitative study. Journal of Intellectual Disability Research, 57(4), pp. 380-389. ISSN (print) 0964-2633

Tuffrey-Wijne, Irene (2013) A new model for breaking bad news to people with intellectual disabilities. Palliative Medicine, 27(1), pp. 5-12. ISSN (print) 0269-2163

Wagemans, Annemieke A. M., Van Schrojenstein Lantman-de Valk, Henny M. J., Proot, Ireen M., Metsemakers, Job, Tuffrey-Wijne, Irene and Curfs, Leopold M. G. (2013) End-of-life decisions for people with intellectual disabilities, an interview study with patient representatives. Palliative Medicine, 27(8), pp. 765-771. ISSN (print) 0269-2163

Tuffrey-Wijne, Irene (2013) Palliative Care for People with Learning Disabilities Network. European Journal of Palliative Care, 20(1), pp. 48-50. ISSN (print) 1352-2779

Tuffrey-Wijne, Irene, Giatras, Nikoletta, Butler, Gary and Cresswell, Amanda (2012) People with intellectual disabilities who are affected by a relative or friend with cancer: a qualitative study exploring experiences and support needs. European Journal of Oncology Nursing, 16(5), pp. 512-519. ISSN (print) 1462-3889

Butler, Gary, Cresswell, Amanda, Giatras, Nikoletta and Tuffrey-Wijne, Irene (2012) Doing it together (DM Special Issue). British Journal of Learning Disabilities, 40(2), pp. 134-142. ISSN (print) 1354-4187

Cross, Helen, Cameron, Marsaili, Marsh, Sheila and Tuffrey-Wijne, Irene (2012) Practical approaches toward improving end-of-life care for people with intellectual disabilities: effectiveness and sustainability. Journal of Palliative Medicine, 15(3), pp. 322-326. ISSN (print) 1096-6218

Tuffrey-Wijne, Irene and Butler, Gary (2010) Co-researching with people with learning disabilities: an experience of involvement in qualitative data analysis. Health Expectations, 13(2), pp. 174-184. ISSN (print) 1369-6513

Tuffrey-Wijne, Irene (2010) Do you provide equal care to people with learning disabilities? Nursing Times, 106(31), p. 8.

Tuffrey-Wijne, Irene, Bernal, Jane, Hubert, Jane, Butler, Gary and Hollins, Sheila (2009) People with learning disabilities who have cancer: an ethnographic study. British Journal of General Practice (BJGP), 59(564), pp. 503-509. ISSN (print) 0960-1643

Book

Tuffrey-Wijne, Irene (2013) How to break bad news to people with intellectual disabilities. London, U.K. : Jessica Kingsley. 189p. ISBN 9781849052801

Book Section

Tuffrey-Wijne, Irene (2022) Foreword. In: Stancliffe, Roger J. , Wiese, Michele Y. , McCallion, Philip and McCarron, Mary, (eds.) End of life and people with intellectual and developmental disability : contemporary issues, challenges, experiences and practice. Cham, Switzerland : Palgrave Macmillan. pp. v-ix. ISBN 9783030986964

Tuffrey-Wijne, Irene and Wilson, Jean (2020) Death and dying. In: Heslop, Pauline and Hebron, Crispin, (eds.) Promoting the health and well-being of people with learning disabilities. Cham, Switzerland : Springer. pp. 107-124. ISBN 9783030434878

Tuffrey-Wijne, Irene (2015) Cancer and intellectual disability. In: Wyatt, Debbie and Hulbert-Williams, Nicholas, (eds.) Cancer and cancer care. London, U.K. : SAGE. pp. 143-158. ISBN 9781446256282

Tuffrey-Wijne, Irene (2014) Palliative care to people with intellectual disabilities: developments in the United Kingdom and beyond. In: Bruhn, Ramona and Strasser, Benjamin, (eds.) Palliative Care fur Menschen mit geistiger Behinderun: Interdisziplinare Perspektiven fur die Begleitung am Lebensende. Stuttgart : Kohlhammer. pp. 264-268. ISBN 9783170234536

Tuffrey-Wijne, Irene and Watchman, Karen (2014) Sharing the diagnosis of dementia: breaking bad news to people with an intellectual disability. In: Watchman, Karen, (ed.) Intellectual disability and dementia: research into practice. London : Jessica Kingsley Publishers. pp. 184-203. ISBN 9781849054225

Monograph

Tuffrey-Wijne, Irene and McLaughlin, Dorry (2015) Consensus norms for palliative care of people with intellectual disabilities in Europe: EAPC White Paper. (Other) Milan, Italy : European Association of Palliative Care.

Bekkema, Nienke, Tuffrey-Wijne, Irene, Wagemans, Annemieke, Hertogh, Cees, Francke, Anneke and de Veer, Anke (2015) 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. (Project Report) Utrecht, The Netherlands : NIVEL. 20 p. ISBN 9789461223333

Database or Web Resource

Tuffrey-Wijne, Irene (2012) Breaking bad news.

This list was generated on Fri Jun 14 06:46:48 2024 BST.