These articles and texts have been identified during the development of the Intellectually Disabled page by the authors and reviewers. This is not an exhaustive list. References were selected for their relevance, and have not been formally reviewed for quality.
2010
Courtenay K, Jokinen NS,Strydom A Caregiving and Adults With Intellectual Disabilities Affected by Dementia. J Pol Pract Intellect Disabil. 2010 Mar;7(1):26-33.
2009
Read S, Thompson-Hill J Palliative care nursing in relation to people with intellectual disabilities. Int J Palliat Nurs. 2009 May;15(5):226-32.
2008
Balogh R, Ouellette-Kuntz H, Bourne L, Lunsky Y, Colantonio A. Organising health care services for persons with an intellectual disability. Cochrane Database Syst Rev. 2008 Oct 8;(4):CD007492.
Li S, Ng J. End-of-life care: nurses' experiences in caring for dying patients with profound learning disabilities--a descriptive case study. Palliat Med. 2008 Dec;22(8):949-55. Epub 2008 Sep 17.
Marlow S, Martin M. 'A voyage of grief and beauty': supporting a dying family member with an intellectual disability. Int J Palliat Nurs. 2008 Jul;14(7):342-9.
Stein GL. Providing palliative care to people with intellectual disabilities: services, staff knowledge, and challenges. J Palliat Med. 2008 Nov;11(9):1241-8.
2007
Carney T, Keyzer P. Planning for the Future: Arrangements for the Assistance of People Planning for the Future of People with Impaired Capacity. QUTLJJ. 2007;7(2):255-78.
Regnard C, Reynolds J, Watson B, Matthews D, Gibson L, Clarke C. Understanding distress in people with severe communication difficulties: developing and assessing the Disability Distress Assessment Tool (DisDAT). J Intellect Disabil Res. 2007 Apr;51(Pt 4):277-92.
Tuffrey-Wijne I, Bernal J, Butler G, Hollins S, Curfs L. Using Nominal Group Technique to investigate the views of people with intellectual disabilities on end-of-life care provision. J Adv Nurs. 2007 Apr;58(1):80-9.
2006
Stienstra D, Chochinov HM. Vulnerability, disability, and palliative end-of-life care. J Palliat Care. 2006 Autumn;22(3):166-74.
2005
Botsford A, King A. End of life care policies for people with an intellectual disability. J Disabil Pol Stud. 2005 Sum;16(1):22-30.
Read S. Learning disabilities and palliative care: recognizing pitfalls and exploring potential. Int J Palliat Nurs. 2005 Jan;11(1):15-20.
Tuffrey-Wijne I, Bernal J, Jones A, Butler G, Hollins S. People with intellectual disabilities and their need for cancer information. Eur J Oncol Nurs. 2006 Apr;10(2):106-16. Epub 2005 Oct 6.
2004
Sullivan SG, Hussain R, Threlfall T, Bittles AH. The incidence of cancer in people with intellectual disabilities. Canc Causes Contr. 2004 Dec;15(10):1021-5.
2003
Ng J, Li S. A survey exploring the educational needs of care practitioners in learning disability (LD) settings in relation to death, dying and people with learning disabilities. Eur J Cancer Care (Engl). 2003 Mar;12(1):12-9.
Tuffrey-Wijne I. The palliative care needs of people with intellectual disabilities: a literature review. Palliat Med. 2003 Jan;17(1):55-62.
2002
Tuffrey-Wijne I. The palliative care needs of people with intellectual disabilities: a case study. Int J Palliat Nurs. 2002 May;8(5):222-32.
1997
Cooke LB. Cancer and learning disability. J Intellect Disabil Res. 1997 Aug;41(Pt 4):312-6.
Evidence and literature relevant to bereavement for people with intellectual disabilities
2007
Read S, Elliott D. Exploring a continuum of support for bereaved people with intellectual disabilities: a strategic approach. J Intellect Disabil. 2007 Jun;11(2):167-81.
Todd S. Silenced grief: living with the death of a child with intellectual disabilities. J Intellect Disabil Res. 2007 Aug;51(Pt 8):637-48.
2006
Dowling S, Hubert J, White S, Hollins S. Bereaved adults with intellectual disabilities: a combined randomized controlled trial and qualitative study of two community-based interventions. J Intellect Disabil Res. 2006 Apr;50(Pt 4):277-87.
Read S, Spall B. Bereavement and people with a learning disability: A practice initiative in response to a local need. Learn Disabil Pract. 2006 Mar;9(2):8-15. No abstact available.
2005
Dodd P, Dowling S, Hollins S. A review of the emotional, psychiatric and behavioural responses to bereavement in people with intellectual disabilities. J Intellect Disabil Res. 2005 Jul;49(Pt 7):537-43.
Read S. Loss, bereavement and learning disability: providing a continuum of support. Learn Disabil Pract. 2005 Feb;8(1):31-37. No abstact available.
2004
Read S. Developing a bereavement counselling service for people with learning disabilities: Journeys without maps. J Intellect Disabil Res. 2004 Jun;48(4-5):433. (Conference abstracts).
2003
Clegg J, Lansdall-Welfare R. Death, disability and dogma. Philos Psychiatr Psychol. 2003 Mar;10(1): 67–79.
Read S, Elliot D. Death and learning disability: a vulnerability perspective. J Adult Protect. 2003 Feb;5(1):5-14.
2001
Read S. A year in the life of a bereavement counselling and support service for people with learning disabilities. J Intellect Disabil. 2001 Mar;5(1):19-33.
Books
Blackman N. Loss and learning disability. London: Worth Publishing; 2003.
Bigby C. Aging with a lifelong disability, A guide to practice, program and policy issues for human services professionals. London: Jessica Kingsley Publishers; 2004.
Read S. Bereavement and loss. In: Markwick A, Parrish A, editors. Learning disabilities: themes and perspectives. Edinburgh; Oxford: Butterworth-Heinmann; 2003.
Read S. Palliative care for people with learning disabilities. London: Quay Books; 2006.
Last updated 05 April 2012