Striving for independence: Experiences and needs of service users with life limiting conditions

Journal of Advanced Nursing

Volumn 62, Issue 6, 2008, Pages 665-673

  Cotterell, Phil ^a  

^a UNIVERSITY OF BRIGHTON   (United Kingdom)

Author keywords

Empirical research report; Health care; Life limiting conditions; Palliative care; Participatory research; Qualitative; Social care

Indexed keywords

ADULT; AGED; ARTICLE; DAILY LIFE ACTIVITY; FEMALE; HEALTH CARE DELIVERY; HEALTH CARE QUALITY; HUMAN; MALE; MIDDLE AGED; PALLIATIVE THERAPY; PSYCHOLOGICAL ASPECT; SOCIAL SUPPORT; SOCIAL WORK; STANDARD; TERMINAL CARE; TERMINALLY ILL PATIENT; UNITED KINGDOM;

ACTIVITIES OF DAILY LIVING; ADULT; AGED; AGED, 80 AND OVER; DELIVERY OF HEALTH CARE; ENGLAND; FEMALE; HEALTH SERVICES ACCESSIBILITY; HUMANS; MALE; MIDDLE AGED; PALLIATIVE CARE; QUALITY OF HEALTH CARE; SOCIAL SUPPORT; SOCIAL WORK; TERMINAL CARE; TERMINALLY ILL;

EID: 44349169602     PISSN: 03092402     EISSN: 13652648     Source Type: Journal    
DOI: 10.1111/j.1365-2648.2008.04638.x     Document Type: Article

References (59)

1. Addington-Hall J.M. (2004) Referral patterns and access to specialist palliative care. In Palliative Care Nursing: Principles and Evidence for Practice (Payne S., Seymour J. Ingleton C., eds Open University Press, Berkshire, pp. 90 107.
2. Anderson H., Ward C., Eardley A., Gomm S.A., Connolly M., Coppinger T., Corgie D., Williams J.L. Makin W.P. (2001) The concerns of patients under palliative care and a heart failure clinic are not being met. Palliative Medicine 15, 279 286.
3. Barbour R.S. Kitzinger J. (eds 1999) Developing Focus Group Research: Politics, Theory and Practice. Sage Publications Ltd, London.
4. Beresford P. (2003) It's Our Lives: A Short Theory of Knowledge, Distance and Experience. OSP for Citizen Press, London.
5. Beresford P., Shamash M., Forrest V., Turner M. Branfield F. (2005) Developing Social Care: Service Users Vision for Adult Support. Social Care Institute for Excellence, London.
6. Bingley A.F., McDermott E., Thomas C., Payne S., Seymour J.E. Clark D. (2006) Making sense of dying: a review of narratives written since 1950 by people facing death from cancer and other diseases. Palliative Medicine 20, 183 195.
7. Brazil K., Howell D., Bedard M., Krueger P. Heidebrecht C. (2005) Preferences for place of care and place of death among informal caregivers of the terminally ill. Palliative Medicine 19, 492 499.
8. Carter H., MacLeod R., Brander P. McPherson K. (2004) Living with a terminal illness: patient's priorities. Journal of Advanced Nursing 45 (6 611 620.
9. Casarett D.J. Karlawish J.H.T. (2000) Are special ethical guidelines needed for palliative care research. Journal of Pain and Symptom Management 20 (2 130 139.
10. Clark D. Seymour J. (1999) Reflections on Palliative Care. Open University Press, Buckingham.
11. Clark D., Small N., Wright M., Winslow M. Hughes N. (2005) A Bit Of Heaven For The Few: An Oral History of the Modern Hospice Movement in the United Kingdom. Observatory Publications, Lancaster.
12. Costello J. (2005) Palliative care for all: the global challenge. International Journal of Palliative Nursing 11 (10 540.
13. Cotterell P. (2006) Living With Life-Limiting Conditions: A Participatory Study of People's Experiences and Needs. Unpublished PhD thesis, Brunel University, Brunel.
14. Cotterell P., Clarke P., Cowdrey D., Kapp J., Paine M. Wynn R. (2007) Becoming involved in research: A Service User Research Advisory Group. In Creative Engagement in Palliative Care: New Perspectives on User Involvement (Jarrett L., ed Radcliffe Publishing, Abingdon, pp. 101 115.
15. Delmar C., Bøje T., Dylmer D., Forup L., Jakobsen C., Møller M., Sønder H. Pedersen B.D. (2006) Independence/dependence - a contradictory relationship? Life with a chronic illness Scandinavian Journal of Caring Sciences 20, 261 268.
16. Department of Health (2006) Our Health, our Care, our Say: A New Direction for Community Services. Department of Health, London.
17. Disability Rights Commission (2006) Changing Britain for Good: Putting Disability at the Heart of Public Policy. Disability Rights Commission, London.
18. Edmonds P., Karlson S., Khan S. Addington-Hall J. (2001) A comparison of the palliative care needs of patients dying from chronic respiratory diseases and lung cancer. Palliative Medicine 15, 287 295.
19. Egan K.A. Labyak M.J. (2001) Hospice care: a model for quality end-of-life care. In Textbook of Palliative Nursing (Ferrell B. Coyle N., eds Oxford University Press, Oxford, pp. 7 26.
20. Elkington H., White P., Addington-Hall J., Higgs R. Edmonds P. (2005) The healthcare needs of chronic obstructive pulmonary disease patients in the last year of life. Palliative Medicine 19, 485 491.
21. Exley C., Field D., Jones L. Stokes T. (2005) Palliative care in the community for cancer and end-stage cardiorespiratory disease: the views of patients, lay-carers and health professionals. Palliative Medicine 19, 76 83.
22. Fallon M. (2005) Palliative medicine in non-malignant disease. In Oxford Textbook of Palliative Medicine, 3rd edn (Doyle D., Hanks G., Cherney N. Calman K., eds Oxford University Press, Oxford, pp. 843 846.
23. Falter L.-B., Gignac M.A.M. Cott C. (2003) Adaptation to disability in chronic obstructive pulmonary disease: neglected relationships to older adults' perceptions of independence. Disability and Rehabilitation 25 (14 795 806.
24. Flanagan J. Holmes S. (1999) Facing the issue of dependence: some implications from the literature for the hospice and hospice nurses. Journal of Advanced Nursing 29 (3 592 599.
25. Gore J.M., Brophy C.J. Greenstone M.A. (2000) How well do we care for patients with end stage chronic obstructive pulmonary disease (COPD)? A comparison of palliative care and quality of life in COPD and lung cancer Thorax 55, 1000 1006.
26. Hanley B., Bradburn J., Barnes M., Evans C., Goodare H., Kelson M., Kent A., Oliver S., Thomas S. Wallcraft J. (2004) Involving the Public in NHS, Public Health, and Social Care Research: Briefing Notes for Researchers, 2nd edn. INVOLVE Support Unit, Eastleigh.
27. Hart S. (2000) Thinking Through Teaching: A Framework for Enhancing Participation and Learning. David Fulton Publishers Ltd, London.
28. Hill Collins P. (1990) Black Feminist Thought: Knowledge, Consciousness, and the Politics of Empowerment. Routledge, London.
29. Hopkinson J.B. Hallett C.E. (2001) Patient's perceptions of hospice day care: a phenomenological study. International Journal of Nursing Studies 38, 117 125.
30. Horne G. Payne S. (2004) Removing the boundaries: palliative care for patients with heart failure. Palliative Medicine 18, 291 296.
31. Johnston B. Smith L.N. (2006) Nurses' and patients' perceptions of expert palliative nursing care. Journal of Advanced Nursing 54 (6 700 709.
32. Kemmis S. McTaggart R. 2005) Participatory Action Research: Communicative action and the public sphere. In The Sage Handbook of Qualitative Research (Denzin N.K. Lincoln Y.S., eds 3rd edn. Sage Publications Inc, Thousand Oaks, CA, pp. 559 604.
33. Kendall M., Harris F., Boyd K., Sheikh A., Murray S.A., Brown D., Mallinson I., Kearney N. Worth A. (2007) Key challenges and ways forward in researching the "good death": qualitative in-depth interview and focus group study. British Medical Journal 334 (7592 521 524.
34. Kralik D. (2002) The quest for ordinariness: transition experienced by midlife women living with chronic illness. Journal of Advanced Nursing 39 (2 146 154.
35. Kralik D., van Loon A. Telford K. (2005) Transition in Chronic Illness. Understanding Transition. RDNS Research Unit, Booklet 11, Wayville, SA.
36. Low J., Perry R. Wilkinson S. (2005) A qualitative evaluation of the impact of palliative care day services: the experiences of patients, informal carers, day unit managers and volunteer staff. Palliative Medicine 19, 65 70.
37. McIlfatrick S. (2006) Assessing palliative care needs: views of patients, informal carers and healthcare professionals. Journal of Advanced Nursing 57 (1 77 86.
38. McPherson K.M., Brander P., Taylor W.J. McNaughton H.K. (2001) Living with arthritis-what is important? Disability and Rehabilitation 23 (16 706 721.
39. Morris J. (1993) Independent Lives: Community Care and Disabled People. Macmillan Press Ltd, London.
40. Murray S.A., Boyd K. Sheikh A. (2005) Palliative care in chronic illness. British Medical Journal 330, 611 612.
41. National Council for Palliative Care (2005) National Survey of Patient Activity Data for Specialist Palliative Care Services. Full Report for the Year 2003-2004. NCPC, London.
42. National Council for Palliative Care (2007) National Survey of Patient Activity Data for Specialist Palliative Care Services. MDS Full Report for the Year 2006-2007. NCPC, London.
43. Oliver M. (1990) The Politics of Disablement. The Macmillan Press Ltd, London.
44. Oliver M. (1992) Changing the Social Relations of Research Production. Disability, Handicap & Society 7 (2 101 114.
45. Oliver M. Sapey B. (1999) Social Work With Disabled People, 2nd edn. Macmillan Press Ltd, London.
46. Patton M.Q. (2002) Qualitative Research and Evaluation Methods, 3rd edn. Sage Publications Inc, Newbury Park, CA.
47. Payne S., Gott M., Small N., Oliviere D., Sargeant A. Young E. (2005 User Involvement in Palliative Care: A Scoping Study. Final Report to St. Christopher's Hospice. St. Christopher's Hospice, London.
48. Randall F. Downie R.S. (2006) The Philosophy of Palliative Care: Critique and Reconstruction. Oxford University Press, Oxford.
49. Raynes N.V., Leach J., Rawlings B. Bryson R.J. (2000) Palliative care services: views of terminally ill patients. Palliative Medicine 14, 159 160.
50. Saunders C.M. (ed. 1978) The Management of Terminal Disease. Edward Arnold, London.
51. Saunders C.M. Baines M. (1983) Living With Dying: The Management of Terminal Disease. Oxford University Press, Oxford.
52. Seymour J., Ingleton C., Payne S. Beddow V. (2003) Specialist palliative care: Patient's experiences. Journal of Advanced Nursing 44 (1 24 33.
53. Seymour J., Payne S., Reid D., Sargeant A., Skilbeck J. Smith P. (2005) Ethical and methodological issues in palliative care studies: The experiences of a research group. Journal of Research in Nursing 10 (2 169 188.
54. Sparkes A.C. (2001) Myth 94: Qualitative health researchers will agree about validity. Qualitative Health Research 11 (4 538 552.
55. Stone E. Priestley M. (1996) Parasites, pawns and partners: disability research and the role of non-disabled researchers. British Journal of Sociology 47 (4 699 716.
56. Telford K., Kralik D. Koch T. (2006) Acceptance and denial: implications for people adapting to chronic illness: literature review. Journal of Advanced Nursing 55 (4 457 464.
57. Twycross R. (2003) Introducing Palliative Care, 4th edn. Radcliffe Medical Press Ltd, Abingdon.
58. Winter R. Munn-Giddings C. (eds 2001) A Handbook for Action Research In Health And Social Care. Routledge, London.
59. Wollin J.A., Yates P.M. Kristjanson L.J. (2006) Supportive and palliative care needs identified by multiple sclerosis patients and their families. International Journal of Palliative Nursing 12 (1 20 26.