Articles & Academic papers

Shown in alphabetical order, please scroll down for the full list from the previous ten years. Members are welcome to send details of their publications.

Bekkema N., Veer A.J.E. de, Albers G., Hertogh C.M.P.M., Onwuteaka-Philipsen B.D. & Francke A.L. (2013b) Training needs of nurses and social workers in the end-of-life care for people with intellectual disabilities: a national survey. Nurse Education Today doi: 10.1016/j.nedt.2013.07.018.

Bekkema, N., Veer, A.J.E. de, Hertogh, C.M.P.M., Francke, A.L, 2013. Respecting autonomy in the end-of-life care of people with intellectual disabilities A qualitative multiple-case study. Journal of Intellectual Disability Research doi: 10.1111/jir.12023.

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

Blackman, N. (2008). The development of an assessment tool for the bereavement needs of people with learning disabilities. British Journal of Learning Disabilities 36(3):165-170.

Cardy, P. (2005). Learning disability and palliative care. International Journal Palliative Nursing 11(1):14.

Cathcart, F. (1995). Death and people with learning disabilities: Interventions to support clients and carers. British Journol of Clinical Psychology 34:165-175.

Cavanaugh, P. (2004). At home: care options at the end of life. The Exceptional Parent 34(12):46-48.

Cavanaugh, P. (2005). History of end-of-life care for people with disabilities. The Exceptional Parent 35(3):61-71.

Cresswell, A. and 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.

Davis, C. (2005). The case study masterclass: Case 14: A complex bereavement after the death of a patient with learning difficulties. European Journal of Palliative Care 11(2):58.

Day, S., Strauss, D., Shavelle, R., and Reynolds, R. (2005). Mortality and causes of death in persons with Down syndrome in California. Developmental Medicine & Child Neurology 47:171-176.

Dodd, P., Dowling, S., and Hollins, S. (2005). A review of the emotional, psychiatric and behavioural responses to bereavement in people with intellectual disabilities. Journal of Intellectual Disability Research 49(7):537-543.

Dodd, P., Guerin, S., McEvoy, J., Buckley, S., Tyrrell, J., and Hillery, J. (2008). A study of complicated grief symptoms in people with intellectual disabilities. Journal of Intellectual Disability Research 52(5):415-425.

Dowling, S., Hubert, J., and Hollins, S. (2006). Bereaved adults with intellectual disabilities: a combined randomized controlled trial and qualitative study of two community-based interventions. Journal of Intellectual Disability Research 50(4):277-287.

Forbat, L. and McCann, L. (2010). Adults with intellectual disabilities affected by cancer: critical challenges for the involvement agenda. European Journal of Cancer Care 19(1):91-97.

Forrester-Jones, R. (2013) The road barely taken: funerals, and people with intellectual disabilities. Journal of Applied Research in Intellectual Disabilities. 26(3): 243–256.

Gilbert, T., Wilkinson, T., and Crudgington, S. (2007). Supporting people with intellectual disability in the cancer journey: The ‘Living with cancer’ communication pack. European Journal of Oncology Nursing 11(4):357-361.

Handley, E., Hutchinson, N. (2013) The Experience of Carers in Supporting People with Intellectual Disabilities through the Process of Bereavement: An Interpretative Phenomenological Analysis. Journal of Applied Research in Intellectual Disabilities  26(3): 183-185.

Hanna, L., Taggart, L., and Cousins, W. (2011). Cancer prevention and health promotion for people with intellectual disabilities: an exploratory study of staff knowledge. Journal of Intellectual Disability Research 55(3):281-291.

Hogg, J. and 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.

Hollins, S., Tuffrey-Wijne, I. (2013) Meeting the needs of patients with learning disabilities (Editorial), British Medical Journal, doi: 10.1136/bmj.f3421 (Published 29 May 2013)

Hollins, S. and Tuffrey-Wijne, I. (2005). Promoting healthy lifestyles: end of life issues. In G. Grant, P. Goward, M. Richardson, and P. Ramcharan (eds.), Learning disability: a life cycle approach to Valuing People. Maidenhead: Open University Press, 685-705.

Jones, A., Tuffrey-Wijne, I., Bernal, J., Butler, G., and 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.

Jones, D. (2003). Pain management and people with learning disabilities. Journal of Learning Disabilities 7(4):291-295.

Keenan, P. and McIntosh, P. (2000). Learning disabilities and palliative care. Palliative Care Today 9:11-13.

Lynggaard, H. and Alexander, N. (2004). ‘Why are my friends changing?’ Explaining dementia to people with learning disabilities. British Journal of Learning Disabilities 32(1):30-34.

Matthews, D., Gibson, L., and Regnard, C. (2010). One size fits all: palliative care for people with learning disabilities. British Journal of Hospital Medicine 71(1):40-43.

McCann, L. and Forbat, L. (2007) Older people with learning disabilities affected by cancer: involvement and engagement work to inform a research agenda. Stirling, Cancer Care Research Centre, University of Stirling.

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

McEnhill, L. (2004). Disability. In D. Oliviere and B. Monroe (eds.), Death, dying and social differences. Oxford: Oxford University Press, 97-118.

McEnhill, L. (2005). Specialist palliative care social work with people who have learning disabilities. In J. Parker (ed.), Aspects of social work and palliative care. London: Quay Books (MA Healthcare Ltd), 145-164.

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

McLaughlin D, B. O. M. S. (2009). Delivering palliative care to those with a learning disability. European Journal of Palliative Care 16(6):302-305.

Millioud, I., Pont, C., and Berthouzoz, B. (2005). Terminal care in an institution. European Journal of Palliative Care 11(4):167.

Miodrag, N., Silverberg, S.E., Urbano, R.C. & Hodapp, R.M. (2013). Deaths Among Children, Adolescents, and Young Adults with Down Syndrome. Journal of Applied Research in Intellectual Disabilities  26(3): 207–214.

Nancy Miodrag,, Sophie E. Silverberg,, Richard C. Urbano and Robert M. Hodapp

Raji, O., Hollins, S., and Drinnan, A. (2003). How far are people with learning disabilities involved in funeral rites? British Journal of Learning Disabilities 31(1):42-45.

Read, S., Nte, S., Corcoran, P. & Stephens, R. (2013) Using Action Research to Design Bereavement Software: Engaging People with Intellectual Disabilities for Effective Development Journal of Applied Research in Intellectual Disabilities  26(3): 195–206.

Read, S. and Elliot, D. (2006). Care planning in palliative care for people with intellectual disabilities. In B. Gates (ed.), Care planning and delivery in intellectual disability nursing. London: Blackwell Publishing.

Read, S. and Latham, D. (2009). Bowel cancer screening: Involving people with learning disabilities. Journal of Gastrointestinal Nursing 7(7):10-16.

Read, S. and Thompson-Hill, J. (2008). Palliative care nursing in relation to people with intellectual disabilities. British Journal of Nursing 17(8):506-510.

Read, S. and Thompson-Hill, J. (2009). Palliative care nursing in relation to people with intellectual disabilities. International Journal of Palliative Nursing 15(5):226-232.

Read, S. (2004). Mortality of people with learning disability following relocation from long-stay hospital to social care. Journal of Learning Disabilities 8(3):299-314.

Read, S. (2005). Learning disabilities and palliative care: recognizing pitfalls and exploring potential. International Journal of Palliative Nursing 11(1):15-20.

Regnard, C., Reynolds, J., Watson, B., Matthews, D., Gibson, L., and Clarke, C. (2007). Understanding distress in people with severe communication difficulties: developing and assessing the Disability Distress Assessment Tool (DisDAT). Journal of Intellectual Disability Research 51(4):277-292.

Ryan, K. and McQuillan, R. (2005). Palliative care for disadvantaged groups: people with intellectual disabilities. Progress in Palliative Care 13(2):70-74.

Sullivan, S., Hussain, R., Threlfall, T., and Bittles, A. (2004). The incidence of cancer in people with intellectual disabilities. Cancer Causes and Control 15:1025.

Thompson, D. (2005). “Well, we’ve all got to get old, haven’t we?” Reflections of older people with intellectual disability on aging and change. Journal of Gerontological Social Work 37(3/4):7-23.

Todd, S. (2013) ‘Being there’: the Experiences of Staff in Dealing with Matters of Dying and Death in Services for People with Intellectual Disabilities.  Journal of Applied Research in Intellectual Disabilities. 26(3): 215–230.

Todd, S. (2004). Death counts: the challenge of death and dying in learning disability services. Learning Disability Practice 7(10):12-15.

Todd, S. (2005). Surprised endings: the dying of people with learning disabilities in residential services. International Journal of Palliative Nursing 11(2):80-82.

Tuffrey-Wijne, I.,  Giatras, N.,  Butler, G.,  Cresswell, A.,  Manners, P. & Bernal, J. (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): 231–242.

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

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

Tuffrey-Wijne, I. (2010). Exploring the lived experiences of people with learning disabilities who are dying of cancer. Nursing Times 106(19):15-18.

Tuffrey-Wijne, I. (2012). A new model for breaking bad news to people with intellectual disabilities. Palliative Medicine DOI: 10.1177/0269216311433476.

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

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

Tuffrey-Wijne, I., Bernal, J., Hubert, J., Butler, G., and 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., Bernal, J., Jones, A., Butler, G., and 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., and 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.

Tuffrey-Wijne, I., Curfs, L., and 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.

Tuffrey-Wijne, I. and 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., Giatras, N., Butler, G., and 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 DOI: 10.1016/j.ejon.2012.01.002

Tuffrey-Wijne, I., Hogg, J., and 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. and 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., McEnhill, L., Curfs, L., and 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., Whelton, R., Curfs, L., and 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.

Tuffrey-Wijne et al (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, Palliative Medicine, accessed here

Tyrer, F., Smith, L., and McGrother, C. (2007). Mortality in adults with moderate to profound intellectual disability: a population-based study. Journal of Intellectual Disability Research 51(7):520-527.

Wagemans, A., van Schrojenstein Lantman-de Valk, H., Tuffrey-Wijne, I., Widdershoven, G., and 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.

Watchman, K. (2005) Practitioner raised issues and end of life care for adults with Down syndrome and dementia. Journal of Policy and Practice in Intellectual Disabilities, Vol. 2(2): 156-162.

Watchman, K. (2008) Changes in accommodation experienced by people with Down syndrome and dementia in the first five years after their diagnosis. Journal of Policy and Practice in Intellectual Disability. Vol.5(1), pp.61-63.

Watchman, K. (2007) Dementia and Down’s syndrome: the diagnosis and support needed. Learning Disability Practice. Vol. 10(2), pp.10-14.

Watchman, K. (Ed) (2014) Intellectual Disability and Dementia: Research into Practice. London. Jessica Kingsley.

Watchman, K. (2014) Supporting People with Down’s syndrome and dementia: CPD article. Learning Disability Practice. Vol.17(9), pp.31-40.

Watchman, K. (2014) Reducing marginalisation in people with a learning disability and dementia, Australian Journal of Dementia Care. Vol.2(6), pp.31-34.

Whitington, J. (2010). Exploring the lived experiences of people with learning disabilities who are dying of cancer. Nursing Times 106(19):13-14.

Willis, D., Kennedy, C., and Kilbride, L. (2008). Breast cancer screening in women with learning disabilities: current knowledge and considerations. British Journal of Learning Disabilities 36(3):171-184.

Zwakhalen, S., Van Dongen, K., Hamers, J., and Huijer Abu-Saad, H. (2004). Pain assessment in intellectually disabled people: non-verbal indicators. Journal of Advanced Nursing 45(3):236-245.