People with learning disabilities who have cancer: An ethnographic study

British Journal of General Practice

Volumn 59, Issue 564, 2009, Pages 503-509

  Tuffrey Wijne, Irene ^a   Bernal, Jane ^c   Hubert, Jane ^d   Butler, Gary ^a   Hollins, Sheila ^b  

^a ST GEORGE'S UNIVERSITY OF LONDON   (United Kingdom)

^b ST GEORGE S HOSPITAL   (United Kingdom)

^c Cornwall Partnership NHS Trust ^*  (United Kingdom)

^d NONE

Author keywords

Ethnography; Learning disorders; Mental retardation; Neoplasms; Qualitative research; Terminal care

Indexed keywords

ADULT; AGED; ARTICLE; CANCER DIAGNOSIS; CLINICAL ARTICLE; CONTROLLED STUDY; ETHNOGRAPHY; FEMALE; HEALTH CARE ACCESS; HEALTH CARE PERSONNEL; HEALTH CARE SYSTEM; HOSPICE; HUMAN; LEARNING DISORDER; MALE; METASTASIS; NURSING HOME; PATIENT CARE; PATIENT DECISION MAKING; PERSONAL EXPERIENCE; UNITED KINGDOM;

ADULT; ATTITUDE OF HEALTH PERSONNEL; ATTITUDE TO HEALTH; CAREGIVERS; FAMILY PRACTICE; FEMALE; HUMANS; LEARNING DISORDERS; MALE; MIDDLE AGED; NEOPLASMS; PROSPECTIVE STUDIES; QUALITATIVE RESEARCH; QUALITY OF HEALTH CARE; QUALITY OF LIFE;

EID: 67650831255     PISSN: 09601643     EISSN: None     Source Type: Journal    
DOI: 10.3399/bjgp09X453413     Document Type: Article

References (26)

1. Department of Health. Valuing people: a new strategy for learning disability for the 21st century. A white paper. London: Department of Health, 2001. http://www.archive.official-documents.co.uk/document/cm50/5086/5086.htm (accessed 23 Apr 2009).
2. Emerson E, Hatton C. People with learning disabilities in England. Lancaster: Centre for Disability Research, 2008.
3. Hollins S, Attard MT, von Fraunhofer N, et al. Mortality in people with learning disability: Risks, causes, and death certification findings in London. Dev Med Child Neurol 1998; 40(1): 50-56. (Pubitemid 28036991)
4. Disability Rights Commission. Equal treatment: closing the gap - a formal investigation into physical health inequalities experienced by people with learning disabilities and/or mental health problems. London: DRC, 2006.
5. Department of Health. Health inequalities: progress and next steps. London: Department of Health, 2008.
6. Day K, Jancar J. Mental and physical health and ageing in mental handicap: a review. J Intellect Disabil Res 1994; 38(241): 256. (Pubitemid 24168350)
7. Janicki M, Dalton A, Henderson C, Davidson P. Mortality and morbidity among older adults with intellectual disability: health services considerations. Disabil Rehabil 1999; 21(5/6): 284-294. (Pubitemid 29248610)
8. Hogg J, Tuffrey-Wijne I. Cancer and intellectual disabilities: a review of some key contextual issues. J Appl Res Intellect Disabil 2008; 21(6): 509-518.
9. Cooke LB. Cancer and learning disability. J Intellect Disabil Res 1997; 41(4): 312-316.
10. Hogg J, Northfield J, Turnbull J. Cancer and people with learning disabilities: the evidence from published studies and experiences from cancer services. Kidderminster: BILD Publications, 2001.
11. Office for National Statistics. Mortality statistics: deaths registered in 2007 (DR-07 Review of the national statistician on deaths in England and Wales 2007). Newport: Office for National Statistics, 2008.
12. Todd S. Death counts: the challenge of death and dying in learning disability services. Learning Disability Practice 2004; 7(10): 12-15. (Pubitemid 40008246)
13. Brown H, Burns S, Flynn M. Supporting people through terminal illness and death. In: The Foundation for People with Learning Disabilities. Today and tomorrow: the report of the Growing Older with Learning Disabilities Programme. London: Mental Health Foundation, 2002; 95-105.
14. Tuffrey-Wijne I, Whelton R, Curfs L, Hollins S. Palliative care provision for people with intellectual disabilities: a questionnaire survey of specialist palliative care professionals in London. Palliat Med 2008; 22(3): 281-290. (Pubitemid 351795933)
15. World Health Organization. ICD-10: The tenth revision of the International Statistical Classification of Diseases and Related Health Problems. Geneva: World Health Organization, 1992.
16. Strauss A, Corbin J. Basics of qualitative research: techniques and procedures for developing grounded theory, 2nd ed. London: Sage Publications, 1998.
17. Department of Health. Seeking consent: working with people with learning disabilities. London: Department of Health, 2001.
18. General Medical Council. Consent: patients and doctors making decisions together. London: General Medical Council, 2008.
19. Michael J. Healthcare for all: report of the independent inquiry into access to healthcare for people with learning disabilities. 2008. London: Aldrick Press, 2008.
20. Todd S. Surprised endings: the dying of people with learning disabilities in residential services. Int J Palliat Nurs 2005; 11(2): 80-82.
21. Jones A, Tuffrey-Wijne I, Bernal J, et al. Meeting the cancer information needs of people with learning disabilities: experiences of paid carers. Br J Learn Disabil 2007; 35(1): 12-18.
22. Cumella S, Martin D. Secondary healthcare for people with a learning disability. London: Department of Health, 2000.
23. Sowney M, Barr O. Equity of access to health care for people with learning disabilities: a concept analysis. J Learn Disabil 2004; 8(3): 247-265. (Pubitemid 39220351)
24. Murphy J. Perceptions of communication between people with communication disability and general practice staff. Health Expect 2006; 9(1): 49-59.
25. Noone I, Crowe M, Pillay I, O'Keefe S. Telling the truth about cancer: views of elderly patients and their relatives. Ir Med J 2000; 93(4): 104-105. (Pubitemid 30703362)
26. Seale C. Communication and awareness about death: a study of a random sample of dying people. Soc Sci Med 1991; 32(8): 943-952.