Publications by the author related to the guidelines on this website

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., Watchman, K. (2014) Sharing the diagnosis of dementia: breaking bad news to people with a learning disability. In Watchman, K. (ed) Intellectual disability and dementia: research into practice. London: Jessica Kingsley Publishers

Tuffrey-Wijne I (2014) Breaking bad news: how can we help someone with Down’s syndrome understand? DSA Journal 129 (spring/summer), 28-30

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

Tuffrey-Wijne, I. (2012) How to break bad news to people with intellectual disabilities: a guide for carers and professionals. London: Jessica Kingsley Publishers

Hollins, S., Tuffrey-Wijne, I. (2009) Am I going to die? (Books Beyond Words Series). London: RCPsychPublications/St George’s University

Back to top

Other publications by the author related to breaking bad news

Tuffrey-Wijne, I. (2010) Living with learning disabilities, dying with cancer: thirteen personal stories. London: Jessica Kingsley Publishers

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

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

Donaghey, V., Bernal, J., Tuffrey-Wijne, I., Hollins, S. (2002) Getting on with cancer (Books Beyond Words Series). London: Gaskell/St George’s Hospital Medical School.

Back to top

Other publications by the author

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 Access here

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 online first, doi:10.1177/0269216315600993 Access here

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 Access here

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 Access here

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) En-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. (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

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

Back to top

Publications related breaking bad news to people with intellectual disabilties, by other authors

Blackman, N. (2003) Loss and learning disability London, Worth Publishing

Blackman, N., Todd, S. (2005) Caring for people with learning disabilities who are dying: a practical guide for carers London, Worth Publishing

McEnhill, L. (2004) Breaking bad news to people with intellectual disabilities (ID). Journal of Intellectual Disability Research 48 (4, 5), 433

McEnhill, L. (2008) Breaking bad news of cancer to people with learning disabilities. British Journal of Learning Disabilities 36 (3), 157-164

Read, S. (2006) “Communication in the dying context,” In: Palliative care for people with learning disabilities, S. Read, ed. London: Quay Books, pp. 93-106

Read, S. (1998) Breaking bad news to people who have a learning disability. British Journal of Nursing 7 (2), 86-91

Back to top

Publications related to breaking bad news in general, by other authors

There is a vast number of publication on this topic, mostly written from the perspectives of doctors and other health care professionals. Here is a selection.

Back, A., Arnold, R., Baile, W., Tulsky, J., & Fryer-Edwards, K. (2005) Approaching difficult communicaion tasks in oncology. CA Cancer Journal for Clinicians 55 (3), 164-177

Baile, W., Buckman, R., Lenzi, R., Glober, G., Beale, E., & Kudelka, A. (2005) SPIKES – a six-step protocol for delivering bad news: application to the patient with cancer. The Oncologist 5 (4), 302-311

Buckman, R. (1992) How to break bad news: a guide for health care professionals. Baltimore: The John Hopkins University Press.

Eggly, S., Penner, L., & Albrecht, T. (2006) Discussing bad news in the outpatient oncology clinic: rethinking current communication guidelines. Journal of Clinical Oncology 24, 716-719

Fallowfield, L. & Jenkins, V. 2004. Communicating sad, bad, and difficult news in medicine. Lancet 24, 312-319

Faulkner, A. (1998) When the news is bad: a guide for health professionals. Tewkesbury: Nelson Thornes.

Girgis, A. & Sanson-Fisher, R. (1995) Breaking bad news: consensus guidelines for medical practitioners. Journal of Clinical Oncology 13 (99), 2449-2456

Harrison, M. & Walling, M. (2010) What do we know about giving bad news? A review. Clinical Pediatrics 49 (7), 619-626

Kaye, P. (1996) Breaking bad news: a 10 step approach. Northampton: EPL Publications.

Knott L. (2010) Breaking bad news http://www.patient.co.uk/doctor/Breaking-Bad-News.htm

Levetown, M. 2012. Communicating with children and families: from everyday interactions to skill in conveying distressing information.

Pedriatics 121 (5), 1441-1460

Oken, D. 1961. What to tell cance patients: a study of medical attitudes. Journal of the American Medical Association 175 (13), 1120-1128

Paul, C., Clinton-McHarg, T., Sanson-Fisher, R., Douglas, H., & Webb, G. 2009. Are we there yet? The state of the evidence base for guidelines on breaking bad news to cancer patients. European Journal of Cancer 45 (17), 2960-2966

Ptacek, J.T. & mcIntosh, E. 2009. Physician challenges in communicating bad news. Journal of Behavioural Medicine 32 (4), 380-387

Randall, R. & Wearn, A. 2005. Receiving bad news: patients with haematological cancer reflect on their experience. Palliative Medicine 19 (8), 594-598

Van de Kieft, G. 2001. Breaking bad news. American Family Physician 64 (12), 1975-1978

Back to top