gradient
Dr Irene Tuffrey-Wijne

Dr Irene Tuffrey-Wijne

School: Centre for Health and Social Care Research

Job Title: Associate Professor

Email: I.Tuffrey-Wijne@sgul.kingston.ac.uk

Biography

Irene Tuffrey-Wijne qualified as a nurse in Amsterdam and moved to the UK in 1985. She holds a first honours degree in palliative care nursing and completed a PhD in the palliative care of people with intellectual disabilities (learning disabilities) in 2007.

Irene has extensive clinical experience in the fields of both intellectual disabilities and palliative care. Irene joined St George's University of London in 2001 and the Faculty of Health, Social Care and Education (Kingston University and St George's, University of London) in 2012.

Irene has close collaborative links with Maastricht University in the Netherlands. She leads a programme of research aimed at improving the health care and end of life care of people with intellectual disabilities.

Irene has published widely (including several books, most recently on 'How to break bad news to people with intellectual disabilities') and has presented her work across the world.

A key aspect of her research is the involvement of people with intellectual disabilities as participants, advisors and co-researchers. Irene is chair of the European Association of Palliative Care (EAPC) Taskforce on Intellectual Disabilities.

Academic and professional qualifications

  • PhD, Palliative Care for People with Intellectual Disabilities, Maastricht University, Netherlands
  • BSc, Nursing Studies Palliative Care (First Class Honours), King's College, UK
  • PgDip, Diploma Higher Education in Nursing Studies Palliative Care (Distinction), King's College London, UK
  • HBO-V (Registered Nurse) Gijsbreght Academie (College of Nursing), Amsterdam, Netherlands

Professional experience

  • 2014 - present
    Associate Professor, St George's University of London & Kingston University
  • 2008 - present
    Honorary Senior Research Fellow, Maastricht University, Gouvernor Kremers Centre, Netherlands
  • 2013 - 2014
    Senior Research Fellow, St George's University of London & Kingston University
  • 2010 - 2013
    Senior Research Fellow, St George's University of London
  • 2004 - 2010
    Research Fellow (St George's University),
  • 2004 - 2010
    Research and Development Nurse (St George's University),
  • 1998 - 2001
    Palliative Care Nurse Specialist (Trinity Hospice, London),
  • 1996 - 1998
    Ward Sister (Trinity Hospice, London),
  • 1993 - 1996
    Staff Nurse (Trinity Hospice, London),
  • 1988 - 1993
    Residential Care Home Manager (L'Arche Community for People with Intellectual Disabilities, London),
  • 1987 - 1988
    Various agency nursing posts, Netherlands,
  • 1985 - 1987
    Residential Care Support Worker (L'Arch Community, London),

Professional registration and membership

  • Registered Nurse (General Nursing), Nursing and Midwifery Council
  • Registered Nurse (Learning Disability Nursing), Nursing and Midwifery Council
  • Member, European Association of Palliative Care
  • Fellow, European Academy of Nursing Science

Research interests

Intellectual disabilities and: palliative care; cancer; communication; breaking bad news; healthcare; patient safety.

Grants and funding

  • 2011 - 2013
    NIHR-SDO
  • 2009 - 2011
    BUPA Foundation
  • 2009 - 2011
    Macmillan Cancer Support
  • 2008 - 2009
    Wellcome Trust Value in People
  • 2004 - 2006
    Cancer Research UK
  • 2005 - 2005
    Cancer Research UK
  • 2005 - 2005
    SW London and St George's NHS Mental Health Trust
  • 2004 - 2004
    Awards for All

Publications

Number of items: 33.

Article

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

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, ISSN (print) 0309-2402 (Epub Ahead of Print)

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, ISSN (print) 1465-8712 (Submitted)

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, 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, 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 (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 Sep 30 03:22:27 2016 BST.