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.

Balogh R, Ouellette-Kuntz H, Bourne L, Lunsky Y, Colantonio A. Organising health care services for persons with an intellectual disability. Cochrane Database of Systematic Reviews 2008, Issue 4. Art. No.: CD007492. DOI: 10.1002/14651858.CD007492

Botsford A and King A. End of life care policies for people with an intellectual disability. Journal of Disability Policy Studies, Vol. 16, No. 1, 22-30 (2005).

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

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

Read, S. 2005. Palliative care for people with learning disabilities: Recognizing pitfalls and exploring potential. International Journal of Palliative Nursing, 11(1), 15-20. 

Regnard C, Reynolds J, Watson B, et al. Understanding distress in people with severe communication difficulties: developing and assessing the Disability Distress Assessment Tool (DisDAT). J Intellect Disabil Res.Apr; 2007 51 (Pt4); 227-92.

Stienstra D. and Chochinov HM. Vulnerability, disability, and palliative end-of-life care. Journal of Palliative Care 2006;22(3):166-74.

Sullivan SG, Hussain R, Threlfall T, et al. The incidence of cancer in people with intellectual disabilities. Cancer Causes Control. 2004 Dec;15(10):1021-5.
 
Tuffrey-Wijne I, Bernal J, Butler et al. Using Nominal Group Techniques to investigate the views of people with intellectual disabilities on end-of-life-care provision. J Adv Nursing 2007 Apr; 58 (1) : 80-9.

Tuffrey-Wijne I, Bernal J, Jones A, et al. People with intellectual disabilities and their need for cancer information. Eur J Oncol Nurs April; 10 (2): 106 – 16 Epub 2005 Oct 6.

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

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.

Evidence and literature relevant to bereavement for people with intellectual disabilities
Clegg, J., & Lansdall-Welfare. (2003). Death, disability and dogma. Philosophy, Psychiatry and Psychology, 10(1), 67–79.

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.

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, Elliott D. (2007) Exploring a continuum of support for bereaved people with intellectual disabilities: a strategic approach. J Intellect Disabil. Res Jun;11(2):167-81.

Read S . 2005. Loss, bereavement and learning disability: providing a continuum of support. Learning Disability Practice, 8(1), 31-37. 

Read, S. & Spall, B. (2006). Bereavement and people with a learning disability: A practice initiative in response to a local need. Learning Disability Practice 9(2), 8-15.

Read S . 2001. A year in the life of a bereavement counselling and support service for people with learning disabilities. Journal of Learning Disabilities, 5 (1) 19-33. 

Read, S. 2004. Developing a bereavement counselling service for people with learning disabilities: Journeys without maps. Journal of Intellectual Disability Research, 48 (4 & 5), 433. 

Read S. & Elliot D., 2003. Death and learning disability: a vulnerability perspective. Journal of Adult Protection

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.

Books 
Blackman N (2003). Loss and Learning Disability, Worth Publishing London
Bigby C. Aging with a lifelong Disability, A guide to Practice, Program and Policy Issues for Human Services Professionals. Jessica Kingsley Publishers, London 2004.
Read S. (2003). Bereavement and loss. In: Markwick, A. & Parrish A. (edits) Learning Disabilities: Themes and perspectives. London: Butterworth / Heinmann.
Read, S. (edit) (2006). Palliative care for people with learning disabilities . London: Quay Books.

This page was created on 23 May 2008
Last updated 20 November 2008