Article

Tilley, Elizabeth, Rouse, Lorna, Tuffrey‐Wijne, Irene and Anderson‐Kittow, Rebecca (2024) Reflections on an evidence review process to inform the co‐design of a toolkit for supporting end‐of‐life care planning with people with intellectual disabilities. Health Expectations, 27(5), e70062. ISSN (print) 1369-6513

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.