Articles & Academic papers

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.

Botsford, A. (2000a). Dealing with the end of life. In M. Janicki and E. Ansello (eds.), Community supports for aging adults with lifelong disabilities. Baltimore: Paul H. Brookes, 415-432.

Botsford, A. L. (2000). Integrating end of life care into services for people with an intellectual disability. Social Work in Health Care 31(1):35-48.

Botsford, A. L. (2004). Status of end of life care in organizations providing services for older people with a developmental disability. American Journal on Mental Retardation 109(5):421-428.

Brown, H., Burns, S., and Flynn, M. (2003). ‘Please don’t let it happen on my shift!’: Supporting staff who are caring for people with learning disabilities who are dying. Tizard Learning Disability Review 8(2):32-41.

Brown, H., Flynn, M., and Burns, S. (2003). An ordinary death? The service needs of people with learning disabilities who are dying. The Foundation for People with Learning Disabilities – Updates 4(11):1-4.

Brown, H., Burns, S., and Flynn, M. (2002). Supporting people through terminal illness and death. In The Foundation for People with Learning Disabilities (ed.), Today and tomorrow: the report of the Growing Older with Learning Disabilities Programme. London: Mental Health Foundation, 95-105.

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.

Cooke, L. B. (1997). Cancer and learning disability. Journal of Intellectual Disability Research 41(4):312-316.

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.

Davies, D. and Evans, L. (2001). Assessing pain in people with profound learning disabilities. British Journal of Nursing 10(8):513-516.

Davies, E. (2004). Pain assessment and cognitive impairment: Part 1. Nursing Standard 19(12):39-42.

Davies, E. (2004). Pain assessment and cognitive impairment: Part 2. Nursing Standard 19(13):33-40.

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.

Dieckmann, K., Rübe, C., and Henke, R. (1997). Association of Down’s Syndrome and testicular cancer. Journal of Urology 157:1701-1704.

Dodd, K. and Turk, V. (2002). Supporting people with Down’s Syndrome and dementia. In Foundation for People with Learning Disabilities (ed.), Today and tomorrow: the report of the GOLD Programme. London: Mental Health Foundation, 82-94.

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.

Donovan, J. (2002). Learning disability nurses’ experiences of being with clients who may be in pain. Journal of Advanced Nursing 38(5):458-466.

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.

Dowling, S., Hubert, J., and Hollins, S. (2003). Bereavement interventions for people with learning disabilities. Bereavement Care 22(2):19-21.

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.

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.

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.

Hendren, R., Stokes Taylor, W., Lemke, B., and Lemke, P. (1990). Case study: an autistic boy copes with a terminal illness. Journal of the American Academy of Child and Adolescent Psychiatry 29(6):901-904.

Hennequin, M., Faulks, D., and Allison, P. (2003). Parents’ ability to perceive pain experienced by their child with Down syndrome. Journal of Orofactory Pain 17(4):347-353.

Hill, D., Gridley, G., Cnattingius, S., Mellemkjaer, L., Linet, M., Adami, H., Olsen, J., Nyren, O., and Fraumeni, J. (2003). Mortality and cancer incidence among individuals with down syndrome. Archives of Internal Medicine 163(6):705.

Hogg, J., Northfield, J., and Turnbull, J. (2001). Cancer and people with learning disabilities: the evidence from published studies and experiences from cancer services. Kidderminster: BILD Publications.

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., Attard, M. T., von Fraunhofer, N., McGuigan, S., and Sedgwick, P. (1998). Mortality in people with learning disability: Risks, causes, and death certification findings in London. Developmental Medicine & Child Neurology 40(1):50-56.

Hollins, S. and Esterhuyzen, A. (1997). Bereavement and grief in adults with learning disabilities. British Journal of Psychiatry 170:497-501.

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.

Jancar, J. (1990). Cancer and mental handicap: a further study. British Journal of Psychiatry 156:531-533.

Janicki, M., Dalton, A., Henderson, C., and Davidson, P. (1999). Mortality and morbidity among older adults with intellectual disability: health services considerations. Disability and Rehabilitation 21(5/6):284-294.

Jones, A. (2003). Palliative care and people with learning disabilities. Learning Disability Practice 6(7):30-36.

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.

Lindop, E. and Read, S. (2000). District nurses’ needs: palliative care for people with learning disabilities. International Journal of Palliative Nursing 6(3):117-122.

Lohiya, G., Tan-Figueroa, L., and Crinella, F. (2003). End-of-life care for a man with developmental disabilites. The Journal of the American Board of Family Practice 16(1):58-62.

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.

Maaskant, M., Gevers, J., and Wierda, H. (2002). Mortality and life expectancy in Dutch residential centres for individuals with intellectual disability, 1991-1995. Journal of Applied Research in Intellectual Disability 15(3):200-212.

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.

Ng, J. and Li, S. (2003). A survey exploring the educational needs of care practitioners in learning disability (LD) settings in relation to death, dying and people with learning disabilities. European Journal of Cancer Care 12(1):12-19.

Patja, K., Eero, P., and Iivanainen, M. (2001). Cancer incidence among people with intellectual disability. Journal of Intellectual Disability Research 45(4):300-307.

Patja, K., Iivanainen, M., Vesala, H., Oksanen, H., and Ruoppila, I. (2000). Life expectancy of people with intellectual disability: a 35-year follow-up study. Journal of Intellectual Disability Research 44(5):591-599.

Patja, K., Mölsä, P., and Iivanainen, M. (2001). Cause-specific mortality of people with intellectual disability in a population-based, 35-year follow-up study. Journal of Intellectual Disability Research 45(1):30-40.

Puri, B., Lekh, S., Langa, A., Zaman, R., and Singh, I. (1995). Mortality in a hospitalized mentally handicapped population: a 10-year survey. Journal of Intellectual Disability Research 39(5):442-446.

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

Read, S. (1998). The palliative care needs of people with learning disabilities. International Journal of Palliative Nursing 4(5):246-251.

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.

Regnard, C., Matthews, D., Gibson, L., and Clarke, C. (2003). Difficulties in identifying distress and its causes in people with severe communication problems. International Journal of Palliative Nursing 9(4):173-176.

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

Strauss, D., Kastner, T., and Shavelle, R. (1998). Mortality of adults with developmental disabilities living in California institutions and community care, 1985-1994. Mental Retardation 36(5):360-371.

Strauss, D., Shavelle, R., Baumeister, A., and Anderson, T. (1998). Mortality in persons with developmental disabilities after transfer into community care. American Journal on Mental Retardation 102(6):569-581.

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. (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.

Todd, S. (2002). Death does not become us: the absence of death and dying in intellectual disability research. Journal of Gerontological Social Work 38(1/2):225-239.

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. (2003). The palliative care needs of people with intellectual disabilities: a literature review. Palliative Medicine 17(1):55-62.

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.

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.

van Thiel, G., van Delden, J., de Haan, K., and Huibers, A. (1997). Retrospective study of doctors’ “end of life decisions” in caring for mentally handicapped people in institutions in the Netherlands. British Medical Journal 315(7100):88-91.

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.

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.

Yang, Q., Rasmussen, S., and Friedman, J. (2002). Mortality associated with Down’s syndrome in the USA from 1983 to 1997: a population-based study. The Lancet 359(9311):1019-1025.

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.

Membership

You are very welcome to browse the website, and take advantage of the information and expertise we offer. However, to benefit fully from opportunities to share and network, you may want to join us as a member.

Membership is free, and open to anyone who is interested in promoting excellent palliative and end of life care for people with learning disabilities.

Our members are mostly professionals, but also include some (family) carers, and some people with learning disabilities.

How to join

The PCPLD Network is a professional association of Help the Hospices

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