Academic articles

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