Using Nominal Group Technique to investigate the views of people with intellectual disabilities on end-of-life care provision

Journal of Advanced Nursing

Volumn 58, Issue 1, 2007, Pages 80-89

  Tuffrey Wijne, Irene ^a   Bernal, Jane ^a   Butler, Gary ^a   Hollins, Sheila ^a   Curfs, Leopold ^b  

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

^b MAASTRICHT UNIVERSITY MEDICAL CENTER   (Netherlands)

Author keywords

Attitudes; Death and dying; Learning disabilities; Nominal Group Technique; Palliative care; Patient participation; Qualitative approaches

Indexed keywords

ADULT; ARTICLE; ATTITUDE TO DEATH; FEMALE; HUMAN; MENTAL DEFICIENCY; METHODOLOGY; MIDDLE AGED; NEEDS ASSESSMENT; ORGANIZATION AND MANAGEMENT; PALLIATIVE THERAPY; PSYCHOLOGICAL ASPECT; PUBLIC OPINION; TERMINAL CARE;

ADULT; ATTITUDE TO DEATH; FEMALE; HUMANS; MENTAL RETARDATION; MIDDLE AGED; NEEDS ASSESSMENT; PALLIATIVE CARE; PUBLIC OPINION; TERMINAL CARE;

EID: 33947667760     PISSN: 03092402     EISSN: 13652648     Source Type: Journal    
DOI: 10.1111/j.1365-2648.2007.04227.x     Document Type: Article

References (50)

1. Angrosino M. (2004) Participant observation and research on intellectual disabilities. In The International Handbook of Applied Research in Intellectual Disabilities (Emerson E., Hatton C., Thompson T. & Parmenter T., eds), John Wiley & Sons Ltd, Chichester, pp. 161-177.
2. Aspinal F., Addington-Hall J., Hughes R. & Higginson I. (2003) Using satisfaction to measure the quality of palliative care: a review of the literature. Journal of Advanced Nursing 42, 324-339.
3. Barnes E. & Bruera E. (2002) Fatigue in patients with advanced cancer: a review. International Journal of Gynecological Cancer 12, 424-428.
4. Booth T. & Booth W. (1994) The use of depth interviewing with vulnerable subjects: lessons from a research study of parents with learning difficulties. Social Science & Medicine 39, 415-425.
5. Bostwick D. & Foss G. (1981) Obtaining consumer input: two strategies for identifying and ranking the problems of mentally retarded adults. Education & Training of the Mentally Retarded 16, 207-212.
6. Bowling A. (2002) Research Methods in Health: Investigating Health and Health Services, 2nd edn. Open University Press, Buckingham.
7. Brandon T. (2005) Empowerment, policy levels and service forums. Journal of Intellectual Disabilities 9, 321-331.
8. Brown R. & Brown I. (2005) The application of quality of life. Journal of Intellectual Disability Research 49, 718-727.
9. Brown H., Burns S. & Flynn M. (2005) Dying Matters: A Workbook on Caring for People with Learning Disabilities Who are Terminally Ill. The Mental Health Foundation, London.
10. Catt S., Blanchard M., Addington-Hall J., Zis M., Blizard B. & King M. (2005) The development of a questionnaire to assess the attitudes of older people to end-of-life issues (AEOLI). Palliative Medicine 19, 397-401.
11. Crawford M., Rutter D., Manley C., Weaver T., Kamaldeep B., Fulop N. & Tyrer P. (2002) Systematic review of involving patients in the planning and development of health care. British Medical Journal 325, 1263-1265.
12. Davis D., Rhodes R. & Baker A. (1998) Curriculum revision: reaching faculty consensus through the Nominal Group Technique. Journal of Nursing Education 37, 326-328.
13. Delbecq A., Van de Ven A. & Gustafson D. (1975) Group Techniques for Program Planning. Scott, Foresman and Company, Glenview, IL.
14. Department of Health (2001) Nothing About Us Without Us. Department of Health, London.
15. Dewar A., White M., Posade S. & Dillon W. (2003) Using nominal group technique to assess chronic pain, patients' perceived challenges and needs in a community health region. Health Expectations 6, 44-52.
16. Dobbie A., Rhodes M., Tysinger J. & Freeman J. (2004) Using a modified nominal group technique as a curriculum evaluation tool. Family Medicine 36, 402-406.
17. Donaghey V., Bernal J., Tuffrey-Wijne I. & Hollins S. (2002) Getting on with Cancer. Gaskell/St George's Hospital Medical School, London.
18. Gallagher M., Hares T., Spencer J., Bradshaw C. & Webb I. (1993) The nominal group technique: a research tool for general practice? Family Practice 10, 76-81.
19. Kiernan C. (1999) Participation in research by people with learning disability: origins and issues. British Journal of Learning Disabilities 27, 43-47.
20. Lancaster T., Hart R. & Gardner S. (2002) Literature and medicine: evaluating a special study module using the nominal group technique. Medical Education 36, 1071-1076.
21. Lindop E. (2006) Research, palliative care and learning disability. In Palliative Care for People with Learning Disabilities (Read S., ed.), Quay Books, London, pp. 153-165.
22. Lipman A. & Lawrence D. (2004) The management of fatigue in cancer patients. Oncology 18, 1527-1535.
23. Lloyd-Jones G., Fowell S. & Bligh J. (1999) The use of the nominal group technique as an evaluative tool in medical undergraduate education. Medical Education 33, 8-13.
24. Marks B. & Heller T. (2003) Bridging the equity gap: health promotion for adults with intellectual and developmental disabilities. Nursing Clinics of North America 38, 205-228.
25. Miller D., Shewchuk R., Elliot T. & Richards S. (2000) Nominal group technique: a process for identifying diabetes self-care issues among patients and caregivers. The Diabetes Educator 26, 305-314.
26. Moore C. (1987) Group Techniques for Idea Building. Sage Publications, London.
27. Northway R. & Jenkins R. (2003) Quality of life as a concept for developing learning disability nursing practice? Journal of Clinical Nursing 12, 57-66.
28. Payne S., Langley-Evans A. & Hillier R. (1996) Perceptions of a 'good' death: a comparative study of the views of hospice staff and patients. Palliative Medicine 10, 307-312.
29. Rodgers J. (1999) Trying to get it right: undertaking research involving people with learning difficulties. Disability & Society 14, 421-433.
30. Schalock R., Brown I., Brown R., Cummins R., Felce D., Matikka L., Keith K. & Parmenter T. (2002) Quality of life: its conceptualization, measurement and application. A consensus document. Mental Retardation 40, 457-470.
31. Shewchuk R. & O'Connor S. (2002) Using congitive concept mapping to understand what health care means to the elderly: an illustrative approach for planning and marketing. Health Marketing Quarterly 20, 69-88.
32. Sigelman C., Budd E., Spanhel C. & Schoenrock C. (1981) When in doubt, say yes: acquiescence in interviews with mentally retarded persons. Mental Retardation 19, 53-58.
33. Sigelman C., Budd E., Winer J., Schoenrock C. & Martin P. (1982) Evaluating alternative techniques of questioning mentally retarded persons. American Journal of Mental Deficiency 86, 511-518.
34. Small N. & Rhodes P. (2000) Too Ill to Talk? User Involvement and Palliative Care. Routledge, London.
35. Steinhauser K., Christakis N., Clipp E., McNeilly M., McIntyre L. & Tulsky J. (2000a) Factors considered important at the end of life by patients, family, physicians, and other care providers. JAMA 284, 2476-2482.
36. Steinhauser K., Clipp E., McNeilly M., Christakis N., McIntyre L. & Tulsky J. (2000b) In search of a good death: observations of patients, families, and providers. Annals of Internal Medicine 132, 825-832.
37. Streiner D. & Norman G. (1995) Health Measurement Scales, 2nd edn. Oxford University Press, Oxford.
38. Todd S. (2004) Death counts: the challenge of death and dying in learning disability services. Learning Disability Practice 7, 12-15.
39. Tong E., McGraw S., Dobihal E., Baggish R., Cherlin E. & Bradley E. (2003) What is a good death? Minority and non-minority perspectives. Journal of Palliative Care 19, 168-175.
40. Townsend J., Ferment D., Dyer S., Karran O., Walgrove A. & Piper M. (1990) Terminal cancer care and patients' preference for place of death: a prospective study. British Medical Journal 301, 415-417.
41. Tuffrey-Wijne I. (2003) The palliative care needs of people with intellectual disabilities: a literature review. Palliative Medicine 17, 55-62.
42. Tuffrey-Wijne I. & Davies J. (2007) This is my story: I've got cancer. 'The Veronica Project': and ethnographic study of the experiences of people with learning disabilities who have cancer. British Journal of Learning Disabilities 35, 7-11.
43. Tuffrey-Wijne I., Bernai J., Jones A., Butler G. & Hollins S. (2006) People with intellectual disabilities and their need for cancer information. European Journal of Oncology Nursing 10, 106-116.
44. Tuffrey-Wijne I., Hogg J. & Curfs L. 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 Disabilities, in press.
45. Vig E., Davenport N. & Pearlman R. (2002) Good deaths, bad deaths, and preferences for the end of life: a qualitative study of geriatric outpatients. Journal of the American Geriatrics Society 50, 1541-1548.
46. Walmsley J. (2004) Involving users with learning difficulties in health improvement: lessons from inclusive learning disability research. Nursing Inquiry 11, 54-64.
47. Walmsley J. & Johnson K. (2003) Inclusive Research with People with Learning Disabilities. Jessica Kingsley Publishers, London.
48. World Health Organisation (1992) ICD-10: International Statistical Classification of Diseases and Related Health Problems (10th Revision). World Health Organisation, Geneva.
49. World Health Organisation (2002) National Cancer Control Programmes: Policies and Managerial Guidelines. World Health Organisation, Geneva.
50. Young A. & Chesson R. (2006) Obtaining views on health care from people with learning disabilities and severe mental health problems. British Journal of Learning Disabilities 34, 11-19.