Ryan S, Wallace L, Tilley E, Tuffrey-Wijne I, Mikulak M, Anderson R, Vaid A, Bebbington P, Keagan- Bull R, Morrissey E, Martin A (2024) Improving support and planning ahead for older people with learning disabilities and family carers: a mixed-methods study. Full report. Health and Social Care Delivery Research 12 (16) https://doi.org/10.3310/MTHW2644
Bruun A, Cresswell A, Jordan L, Keagan-Bull R, Giles J, Gibson S, Anderson-Kittow R, Tuffrey-Wijne I (2024) 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. Palliative Medicine 38 (6), 669-678 https://doi.org/10.1177/02692163241250218
Tuffrey-Wijne I (2024) Assisted dying in people with learning disabilities. Learning Disability Practice 27 (1), 18-19
Tuffrey-Wijne I (2024) End-of-life care planning (Editorial). International Journal of Palliative Nursing 30 (1), 3
Ding R, Keagan-Bull R, Tuffrey-Wijne I (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 (Editorial) BMJ Quality & Safety doi:10.1136/bmjqs-2023-016830
Anderson-Kittow R, Keagan-Bull R, Giles J, Tuffrey-Wijne I (2024) Co‐designing resources to support older people with intellectual disabilities and their families plan for parental death and transitions in care Health Expectations DOI: 10.1111/hex.14000
Tuffrey-Wijne I, Curfs L, Hollins S, Finlay I (2023) Euthanasia and physician-assisted suicide in people with intellectual disabilities and/or autism spectrum disorders: an investigation of 39 Dutch case reports (2012-2021). BJPsych Open
Harper L, McAnelly S, Walshe I, Ooms A, Tuffrey-Wijne I (2023) Behavioural sleep problems in children and adults with intellectual disabilities: an integrative literature review. Journal of Applied Research in Intellectual Disabilities
Noorland H, Korfage I, van der Sar L, Felet F, Tuffrey-Wijne I, van der Heide A, Echteld M (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
Anderson R, Keagan-Bull R, Giles J, Tuffrey-Wijne I (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
Oulton K, Wray J, Kenten C, Russell J, Carr L, Hassiotis A, Jewitt C, Kelly P, Kerry S, Tuffrey-Wijne I, Whiting M, Gibson F (2022) Equal access to hospital care for children with learning disabilities and their families: a mixed-methods study. Health and Social Care Delivery Research
Moore C, Pan C, Roseman K, Stephens M, Bien-Aime C, Morgan A, Ross W, Castillo M, Palathra B, Jones C, Ailey S, Tuffrey-Wijne I, Smeltzer S, Tobias J (2022) Top ten tips palliative care clinicians should know about navigating the needs of adults with intellectual disabilities. Journal of Palliative Medicine
Noorlandt H, Korfage I, Tuffrey-Wijne I, Festen D, Vrijmoeth C, van der Heide A, Echteld M (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
Harper L, Ooms A, Tuffrey-Wijne I (2021) The impact of nutrition on sleep in people with an intellectual disability: an integrative literature review. Journal of Applied Research in Intellectual Disabilities
Noorlandt H, Echteld M, Tuffrey-Wijne I, Festen D, Vrijmoeth C, van der Heide A, Korfage I (2020) Shared decision-making with people with intellectual disabilities in the last phase of life: A scoping review. Journal of Intellectual Disability Research
Adam E, Sleeman K, Brearley S, Hunt K, Tuffrey-Wijne I (2020) The palliative care needs of adults with intellectual disabilities and their access to palliative care services: A systematic review. Palliative Medicine (17 June 2020)
Lam C, Bernal J, Finlayson J, Todd S, Taggart L, Boaz A, Tuffrey-Wijne I (2020) Maximising engagement and participation of intellectual disability (ID) staff in research: insights from conducting a UK-wide survey Journal of Intellectual Disabilities (12 May 2020)
Tuffrey-Wijne I, Lam C, Marsden D, et al. (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 (22 May 2020)
Tuffrey-Wijne I, Finlayson J, Bernal J, Taggart L, Lam C, Todd S (2020) Communicating about death and dying with adults with intellectual disabilities (ID) who are terminally ill or bereaved: a UK-wide survey of ID support staff Journal of Applied Research in Intellectual Disabilities (18 Feb 2020)
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. (2019) 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