Academic articles

Tuffrey-Wijne I, Curfs L, Finlay I, Hollins S. (2019) “Because of his intellectual disability, he couldn’t cope.” Is euthanasia the answer? Journal of Policy and Practice in Intellectual Disabilities 16 (2), 113-116

Oulton K, Wray J, Hassiotis A, Kenten C, Russell J, Tuffrey-Wijne I, Whiting M, Gibsen F. Learning disability nurse provision in children’s hospitals: hospital staff perceptions of whether it makes a difference. BMC Pediatrics 19:192

Kenten C, Wray J, Gibson F, Russell J, Tuffrey-Wijne I, Oulton K (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), 1176-1183

Tuffrey-Wijne I, Curfs L, Finlay I, Hollins S (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

Tuffrey-Wijne I, 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 (1), 727-736

Tuffrey-Wijne I, Rose T, Grant R, Wijne A (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), 1099-1110

Wagemans A, van Schrojenstein Lantman-de Valk H, Proot I, Bressers A, Metsemakers J, Groot M, Tuffrey-Wijne I, Curfs L (2016) 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), 245-254

Oulton K, Wray J, Carr L, Hassiotis A, Jewitt C, Kerry S, Tuffrey-Wijne I, Gibson F (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(12):e012333. doi: 10.1136/bmjopen-2016-012333.

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

Tuffrey-Wijne I, Wicki M, Heslop P, McCarron M, Todd S, Oliver D, De Veer A, Ahlström G, Schäper S, Hynes G, O’Farrell J, Adler J, Riese F, Curfs L (2016) Establishing research priorities for palliative care of people with intellectual disabilities in Europe: a consultation process using nominal group technique. BMC Palliative Care 15:36. DOI 10.1186/s12904-016-0108-5

Tuffrey-Wijne I, Abraham E, Giatras N, Goulding L, Gillard S, White S, Edwards C, Hollins S (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), 2907-2922

Tuffrey-Wijne I, McLaughlin D (2015) Consensus norms for palliative care of people with intellectual disabilities in Europe: EAPC White Paper. European Association of Palliative Care

Tuffrey-Wijne I, Watchman K (2015) Breaking bad news to people with learning disabilities and dementia. Learning Disability Practice 18 (7), 16-23

Tuffrey-Wijne I, McLaughlin D, Curfs L, Dusart A, Hoenger C, McEnhill L, Read S, Ryan K, Satgé D, Straβer B, Westergård B, Oliver D (2015). 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), 446-455

Tuffrey-Wijne, I. (2015) Cancer and intellectual disability. In Wyatt, D. and Hulbert-Williams, N. (eds) Cancer and cancer care. London: Sage Publications. Chapter 10, 143-148

Wagemans A, van Schrojenstein Lantman-de Valk H, Proot I, Metsemakers J, Tuffrey-Wijne I, Curfs L (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), 294-302

Tuffrey-Wijne, I., Hollins, S. (2014) Improving hospital care for patients with intellectual disabilities (Editorial). British Journal of Hospital Medicine 75 (6), 304-305

Tuffrey-Wijne, I., Hollins, S. (2014) Preventing ‘deaths by indifference’: identification of reasonable adjustments is key (Editorial). British Journal of Psychiatry 205, 86-87

Tuffrey-Wijne, I., Goulding, L., Gordon, V., Giatras, N., Abraham, L., White, S., Edwards, C., Gillard, S., Hollins, S. (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 doi:10.1186/1472-6963-14-432

Tuffrey-Wijne, I. (2014) Palliative care to people with intellectual disabilities: developments in the United Kingdom and beyond. In: Bruhn, R., Straβer, B. (eds) Palliative Care für Menschen mit geistiger Behinderung: Interdisziplinäre Perspektiven für die Begleitung am Lebensende. Stuttgart: Kohlhammer. Chapter 7.1, 264-268

Tuffrey-Wijne, I., Goulding, L., Giatras, N., Abraham, L., Gillard, S., White, S., Edwards, C., Hollins, S. (2014) The challenges 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 2014;4:e004606 doi:10.1136/bmjopen-2013-004606

Tuffrey-Wijne, I. (2013) A new model for breaking bad news to people with intellectual disabilities. Palliative Medicine 27 (1), 5-12

Tuffrey-Wijne, I., Giatras, N., Butler, G., Cresswell, A., Manners, P., Bernal, J. (2013) Developing guidelines for disclosure or non-disclosure of bad news to people with intellectual disabilities. Journal of Applied Research in Intellectual Disabilities 26 (3), 231-242

Tuffrey-Wijne I, Giatras N, Goulding L, Abraham E, Fenwick L, Edwards C, 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 Delivery Research 1(13). DOI: 10.3310/hsdr01130

Hollins,S., Tuffrey-Wijne,I. (2013) Meeting the needs of patients with learning disabilities (Editorial). British Medical Journal 346:f3421(Published 29 May 2013)

Tuffrey-Wijne,I. (2013) Palliative Care for People with Learning Disabilities Network. European Journal of Palliative Care 20 (1), 48-50.

Wagemans,A., van Schrojenstein Lantman-de Valk, H., Proot, I., Metsemakers,J., Tuffrey-Wijne, I., Curfs, L. (2013) End-of-life decisions for people with intellectual disabilities, an interview study with patient representatives. Palliative Medicine 27 (8), 765-71

Tuffrey-Wijne, I., Giatras, N., Butler, G., Cresswell, A. (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), 512-519.

Butler, G., Cresswell, A., Giatras, N., Tuffrey-Wijne, I. (2012) Doing it together: co-facilitating focus groups with people with learning disabilities. British Journal of Learning Disabilities 40 (2), 134-142

Tuffrey-Wijne, I., Wagemans, A., Curfs, L. (2012) End of life care for patients with intellectual disabilities. In: A public health perspective on end of life care. Edited by Cohen D, Deliens L. Oxford: Oxford University Press

Cross, H., Cameron, M., Marsh, S., Tuffrey-Wijne, I.: (2012) Practical approaches toward improving end-of-life care for people with intellectual disabilities: effectiveness and sustainability. Journal of Palliative Medicine 15 (3), 322-326

Wagemans, A., van Schrojenstein Lantman-de Valk, H., Proot, I., Metsemakers, J., Tuffrey-Wijne, I., Curfs, L. (2012) 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), 380-389.

Tuffrey-Wijne, I. (2011) People with intellectual disabilities. In Death, dying and social differences. 2nd edition. Edited by Oliviere D, Monroe B, Payne S. Oxford: Oxford University Press

Tuffrey-Wijne, I., Bernal, J., Hollins, S. (2010) Disclosure and understanding of cancer diagnosis and prognosis for people with intellectual disabilities: findings from an ethnographic study. European Journal of Oncology Nursing 14 (3), 224-230

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

Tuffrey-Wijne, I., Butler, G. (2010) Co-researching with people with learning disabilities: an experience of involvement in qualitative data analysis. Health Expectations 13 (2), 174-184

Tuffrey-Wijne, I., Bernal, J., Hubert, J., Butler, G., Hollins, S. (2010) Exploring the lived experiences of people with learning disabilities who are dying of cancer. Nursing Times 106 (19), 15-18

Hollins, S., Tuffrey-Wijne, I. (2010) End of life issues. In: Learning disability: a life cycle approach. 2nd edition. Edited by Grant G, Ramcharan P, Flynn M, Richardson M. Maidenhead: Open University Press, p. 459-473

Wagemans, A., van Schrojenstein Lantman-de Valk, H., Tuffrey-Wijne, I., Widdershoven, G., Curfs, L. (2010) End of life decisions: an important theme in the care for people with intellectual disabilities. Journal of Intellectual Disability Research 54 (6), 516-524

Tuffrey-Wijne, I. (2009) ‘Am I a good girl?’ Dying people who have a learning disability. End of Life Care 2009, 3(1):35-39

Tuffrey-Wijne, I. (2009), Bernal, J., Hubert, J., Butler, G., Hollins, S. (2009) People with learning disabilities who have cancer: an ethnographic study. British Journal of General Practice 59 (564), 503-509

Tuffrey-Wijne, I. (2009): The preferred place of care for people who are dying. Learning Disability Practice 2009, 12(6):16-21

Bernal, J., Tuffrey-Wijne, I. (2008) Telling the truth – or not: disclosure and information for people with intellectual disabilities who have cancer. International Journal for Disability and Human Development 7 (4), 365-370

Tuffrey-Wijne, I., McEnhill L. (2008): Communication difficulties and intellectual disability in end-of-life care. International Journal of Palliative Nursing 14 (4), 192-197

Tuffrey-Wijne, I., Whelton R, Curfs, L., Hollins, S. (2008): Palliative care provision for people with intellectual disabilities: a questionnaire survey of specialist palliative care professionals in London. Palliative Medicine 22 (3),281-290

Hogg, J., Tuffrey-Wijne, I. (2008) Cancer and intellectual disabilities: a review of some key contextual issues. Journal of Applied Research in Intellectual Disabilities 21 (6), 509-518

Tuffrey-Wijne, I., Curfs, L., Hollins, S. (2008) Access to palliative care services by people with learning disabilities: is there equity? Advances in Mental Health and Learning Disabilities 2 (2), 42-48

Cresswell, A., Tuffrey-Wijne, I. (2008) The come back kid: I had cancer, but I got through it. British Journal of Learning Disabilities 36 (3), 152-156

Tuffrey-Wijne, I., Bernal, J., Hollins, S.: Doing research on people with learning disabilities, cancer and dying: ethics, possibilities and pitfalls (2008). British Journal of Learning Disabilities 36 (3), 185-190

Tuffrey-Wijne, I., Curfs, L., Hollins, S. (2008) Providing palliative care to people with intellectual disabilities who have cancer. International Journal on Disability and Human Development 7 (4), 381-386

Jones, A., Tuffrey-Wijne, I., Bernal, J., Butler, G., Hollins, S. (2007) Meeting the cancer information needs of people with learning disabilities: experiences of paid carers. British Journal of Learning Disabilities 35 (1), 12-18

Tuffrey-Wijne, I., Davies, J. (2007) This is my story: I’ve got cancer. ‘The Veronica Project’: an ethnographic study of the experiences of people with learning disabilities who have cancer. British Journal of Learning Disabilities 35 (1), 7-11

Tuffrey-Wijne, I., Bernal, J., Butler, G., Hollins, S., Curfs, L. (2007) Using Nominal Group Technique to investigate the views of people with intellectual disabilities on end-of-life care provision. Journal of Advanced Nursing 58 (1), 80-89

Tuffrey-Wijne, I., Hogg J, Curfs, L. (2007) End-of-life and palliative care for people with intellectual disabilities who have cancer or other life-limiting illness: a review of the literature and available resources. Journal of Applied Research in Intellectual Disability 20 (4), 331-344

Tuffrey-Wijne, I. (2007) Zorg voor mensen met een verstandelijke beperking: zijn palliatieve zorgverleners er klaar voor? (Care for people with intellectual disabilities: are palliative care professionals prepared?). Pallium 9 (4), 22-25

Tuffrey-Wijne, I., McEnhill L, Curfs, L., Hollins, S. (2007) Palliative care provision for people with intellectual disabilities: interviews with specialist palliative care providers in London. Palliative Medicine 21 (6), 493-499

Tuffrey-Wijne, I., Bernal, J., Jones A, Butler, G., Hollins, S. (2006) People with intellectual disabilities and their need for cancer information. European Journal of Oncology Nursing 10 (2), 106-116

Tuffrey-Wijne, I., Curfs, L. (2006) Redactioneel (Editorial). Nederlands Tijdschrift voor de Zorg aan mensen met verstandelijke beperking 32 (3), 141-142

Tuffrey-Wijne, I., Hollins, S., Curfs, L. (2006) Palliatieve zorg voor mensen met een verstandelijke beperking: het perspectief van palliatieve zorgverleners (Palliative care for people with intellectual disabilities: perspectives of palliative care professionals). Nederlands Tijdschrift voor de Zorg aan mensen met verstandelijke beperking 32 (3), 157-169

Tuffrey-Wijne, I., Hollins, S., Curfs, L. (2006) Zorg rond het levenseinde: het perspectief van mensen met een verstandelijke beperking. Een verkennende studie (End-of-life care: perspectives of people with intellectual disabilities. An exploratory study). Nederlands Tijdschrift voor de Zorg aan mensen met verstandelijke beperking 32 (3), 170-180

Tuffrey-Wijne, I., Hollins, S., Curfs, L. (2005) Supporting patients who have intellectual disabilities: a survey investigating staff training needs. International Journal of Palliative Nursing 11 (4), 182-188

Tuffrey-Wijne, I., Bernal, J. (2005) Going to the theatre to talk about cancer. European Journal of Palliative Care 12 (3), 120-121

Tuffrey-Wijne, I. (2005) Pallliatieve zorg voor mensen met een verstandelijke beperking: “Waarom werd mij niets verteld?” (Palliative care for people with intellectual disabilities: “Why wasn’t I told anything?”). Pallium 7 (4), 10-13

Tuffrey-Wijne, I. (2003) The palliative care needs of people with intellectual disabilities: a literature review. Palliative Medicine 17 (1), 55-62

Tuffrey-Wijne, I., Bernal, J. (2003) ‘Getting on’ with cancer. Learning Disability Practice 6 (5), 10-15

Tuffrey-Wijne, I. (2002) The palliative care needs of people with intellectual disabilities: a case study. International Journal of Palliative Nursing 8 (5), 222-232

Tuffrey-Wijne, I. (1998) Care of the terminally ill. Learning Disability Practice 1 (1), 8-11.

Tuffrey-Wijne, I. (1997) Bereavement in people with learning disabilities. European Journal of Palliative Care 4 (5), 170-173

Tuffrey-Wijne, I. (1997) Palliative care and learning disabilities. Nursing Times 93 (31), 50-51