Palliative caregivers who would not take on the caring role again

Journal of Pain and Symptom Management

Volumn 41, Issue 4, 2011, Pages 661-672

  Currow, David C ^a,e   Burns, Catherine ^a   Agar, Meera ^a,b   Phillips, Jane ^c   McCaffrey, Nikki ^a   Abernethy, Amy P ^a,d  

^a FLINDERS UNIVERSITY   (Australia)

^b Braeside Hospital   (Australia)

^c UNIVERSITY OF NOTRE DAME   (Australia)

^d DUKE UNIVERSITY MEDICAL CENTER   (United States)

^e Southern Adelaide Palliative Services   (Australia)

Author keywords

caregivers; health service planning; outcome assessment (health care); Palliative care

Indexed keywords

ADOLESCENT; AGED; ARTICLE; AUSTRALIA; CAREGIVER; COMMUNITY; CONTROLLED STUDY; CROSS-SECTIONAL STUDY; DATA ANALYSIS; DEATH; EDUCATIONAL STATUS; FEMALE; HEALTH SURVEY; HUMAN; MAJOR CLINICAL STUDY; MALE; MEDICAL RECORD REVIEW; MEDICAL STAFF; PALLIATIVE THERAPY; PATIENT CARE; PREVALENCE; SAMPLE; SPOUSE;

CAREGIVERS; CROSS-SECTIONAL STUDIES; DATA INTERPRETATION, STATISTICAL; HUMANS; PALLIATIVE CARE; REGRESSION ANALYSIS; SOUTH AUSTRALIA;

EID: 79953868804     PISSN: 08853924     EISSN: None     Source Type: Journal    
DOI: 10.1016/j.jpainsymman.2010.06.017     Document Type: Article

References (45)

1. J.M. Hauser, and B.J. Kramer Family caregivers in palliative care Clin Geriatr Med 20 2004 671 688 (Pubitemid 39488030)
2. Y.J. Rhee, H.B. Degenholtz, A.T. Lo Sasso, and L.L. Emmanuel Estimating the quantity and economic value of family caregiving for community-dwelling older persons in the last year of life J Am Geriatr Soc 59 2009 1654 1659
3. Access Economics Pty Ltd The economic value of informal care. Report prepared for Carers Australia 2005 Carers Australia Canberra, Australia Available from http://www.accesseconomics.com.au/publicationsreports/getreport. php?report=6&id=6 Accessed March 31, 2010
4. Australian Institute of Health and Welfare Australia's welfare 2003 2003 AIHW Canberra, Australia
5. M. Stommel, C.E. Collins, and B.A. Given The costs of family contributions to the care of persons with dementia Gerontologist 34 1994 199 205 (Pubitemid 24125529)
6. D.D. Franks Economic contribution of families caring for persons with severe and persistent mental illness Adm Policy Ment Health 18 1990 9 18
7. S.M. Aoun, L.J. Kristjanson, D.C. Currow, and P.L. Hudson Caregiving for the terminally ill: at what cost? Palliat Med 9 2005 551 555 (Pubitemid 41645514)
8. S. Zapart, P. Kenny, J. Hall, B. Servis, and S. Wiley Home-based palliative care in Sydney, Australia: the carer's perspective on the provision of informal care Health Soc Care Community 15 2007 97 107
9. P. Carter, and B. Chang Sleep and depression in cancer caregivers Cancer Nurs 23 2000 410 415
10. S. Aoun The hardest thing we have ever done. The social impact of caring for terminally ill people in Australia. Full report of the national inquiry into the social impact of caring for terminally ill people. Report prepared for Palliative Care Australia 2004 Palliative Care Australia Deakin, ACT, Australia
11. G.E. Grande, J.M. Addington-Hall, and C.J. Todd Place of death and access to home care services: are certain patient groups at a disadvantage? Soc Sci Med 7 1998 565 579 (Pubitemid 28322961)
12. V. Maida Factors that promote success in home palliative care: a study of a large suburban palliative care practice J Palliat Care 18 2002 282 286
13. P. Cantwell, S. Turco, and C. Brenneis Predictors of home deaths in palliative care cancer patients J Palliat Care 16 2000 23 28
14. K. Brazil, M. Bedard, and K. Willison Factors associated with home death for individuals who receive home support services: a retrospective cohort study BMC Palliat Care 1 2002 2 Available from http://www.biomedcentral.com/1472-684X/ 1/2 Accessed April 7, 2009
15. M. Agar, D.C. Currow, and T.M. Shelby-James Preference for place of care and place of death in palliative care: are these different questions? Palliat Med 2 2008 787 795
16. G. Grande, and G. Ewing Death at home unlikely if informal carers prefer otherwise: implications for policy Palliat Med 22 2008 971 972
17. S. Aranda, and K. Hayman-White Home caregivers of the person with advanced cancer Cancer Nurs 24 2001 300 307
18. S. Folkman Positive psychological states and coping with severe stress Soc Sci Med 45 1997 1207 1221 (Pubitemid 27387159)
19. P. Hudson Positive aspects and challenges associated with caring for a dying relative at home Int J Palliat Nurs 10 2004 58 65
20. B. Munck, B. Fridlund, and J. Martensson Next-of-kin caregivers in palliative home care - from control to loss of control J Adv Nurs 64 2008 578 586
21. A. Wennman-Larsen, and C. Tishelman Advanced home care for cancer patients at the end of life: a qualitative study of hopes and expectations of family caregivers Scand J Caring Sci 16 2002 240 247 (Pubitemid 35002014)
22. K.I. Stajduhar, and B. Davies Variations in and factors influencing family members' decisions for palliative home care Palliat Med 19 2005 21 32 (Pubitemid 40202055)
23. E.J. Emanuel, D.L. Fairclough, J. Slutsman, and L.L. Emanuel Understanding economic and other burdens of terminal illness: the experience of patients and their caregivers Ann Intern Med 132 2000 451 459 (Pubitemid 30149042)
24. N.A. Christakis, and T.J. Iwashyna The health impact of health care on families: a matched cohort study of hospice use by decedents and mortality outcomes in surviving widowed spouses Soc Sci Med 57 2003 465 475 (Pubitemid 36677507)
25. C. Nijboer, R. Tempelaar, and R. Sanderman Cancer and caregiving: the impact on the caregiver's health Psychooncology 7 1998 3 13 (Pubitemid 28085137)
26. R. Schulz, and S. Beach Caregiving as a risk factor for mortality. The caregiver health effects study JAMA 282 1999 2215 2219 (Pubitemid 30002964)
27. Australian Bureau of Statistics Latest issue 3101.0 - Australian demographic statistics. Released March 22, 2007 Available from www.abs.gov.au/ausstats/abs@nsf/mf/3101.0 Accessed April 23, 2007
28. A.P. Abernethy, C. Burns, J. Wheeler, and D.C. Currow Defining distinct caregiver subpopulations by intensity of end-of-life care provided Palliat Med 23 2009 66 79
29. A.P. Abernethy, D.C. Currow, and B.S. Fazekas Palliative care services make a difference to short- and long-term caregiver outcomes Support Care Cancer 16 2008 585 597
30. D.C. Currow, M. Agar, C. Sanderson, and A. Abernethy Populations who die without specialist palliative care: does lower uptake equate with unmet need? Palliat Med 22 2008 43 50 (Pubitemid 351351369)
31. L. Curtin, and R. Klein Direct standardization (age-adjusted death rates). Statistical notes, no. 6 1995 National Center for Health Statistics Hyattsville, MD
32. D.W. Hosmer, and S. Lemeshow Applied logistic regression 2nd ed. 2000 John Wiley & Sons, Inc. New York
33. G.W. Sun, T.L. Shook, and G.L. Kay Inappropriate use of bivariable analysis to screen risk factors for use in multivariable analysis J Clin Epidemiol 49 1996 907 916 (Pubitemid 26283404)
34. E. von Elm, D.G. Altman, and M. Egger STROBE initiative. Strengthening the reporting of observational studies in epidemiology (STROBE) statement: guidelines for reporting observational studies BMJ 335 2007 806 808 (Pubitemid 350057266)
35. A.M. Clark, M.E. Reid, and C.E. Morrison The complex nature of informal care in home-based heart failure management J Adv Nurs 61 2008 373 383
36. C.J. Cain, and M.N. Wicks Caregiver attributes as correlates of burden in family caregivers coping with chronic obstructive pulmonary disease J Fam Nurs 6 2000 46 68
37. S. Dumont, J. Turgeon, and P. Allard Caring for a loved one with advanced cancer: determinants of psychological distress in family caregivers J Palliat Med 9 2006 912 921 (Pubitemid 44289912)
38. M. Navaie-Waliser, P. Feldman, and D. Gould When the caregiver needs care: the plight of vulnerable caregivers Am J Public Health 92 2002 409 413 (Pubitemid 34184830)
39. J. Aldridge, and S. Becker Children as carers: the impact of parental illness and disability on children's caring roles J Fam Ther 21 1999 303 320
40. B. O'Connell, S. Bailey, and A. Walker Promoting the health and well being of older carers: a proactive strategy Aust Health Rev 26 2003 78 86
41. P.E. Bee, P. Barnes, and K.A. Luker A systematic review of informal caregivers' needs in providing home-based end-of-life care to people with cancer J Clin Nurs 18 2009 1379 1393
42. G. Grande, K. Stajduhar, and S. Aoun Supporting lay carers in end of life care: current gaps and future priorities Palliat Med 23 2009 339 344
43. D. Bruce, G. Paley, P. Underwood, D. Roberts, and D. Steed Communication problems between dementia carers and general practitioners: effect on access to community support services Med J Aust 177 2002 186 188 (Pubitemid 35021428)
44. A. Docherty, A. Owens, and M. Asadi-Lari Knowledge and information needs of informal caregivers in palliative care: a qualitative systematic review Palliat Med 22 2008 153 171 (Pubitemid 351597276)
45. R. Harding, and J. Higginson What is the best way to help caregivers in cancer and palliative care? A systematic literature review of interventions and their effectiveness Palliat Med 17 2003 63 74 (Pubitemid 36193223)