Caregiver Expectations: Predictors of a Worse Than Expected Caregiving Experience at the End of Life

Journal of Pain and Symptom Management

Volumn 50, Issue 4, 2015, Pages 453-461

  Burns, Emma J ^a   Quinn, Stephen J ^b   Abernethy, Amy P ^c,d   Currow, David C ^c  

^a QUEEN ELIZABETH HOSPITAL   (Australia)

^b FLINDERS UNIVERSITY   (Australia)

^c FLINDERS UNIVERSITY   (Australia)

^d DUKE UNIVERSITY MEDICAL CENTER   (United States)

Author keywords

caregivers; expectations; lived experience; Palliative care; population survey

Indexed keywords

ADULT; ARTICLE; CAREGIVER; DEATH; EXPECTATION; FEMALE; HEALTH SERVICE; HUMAN; MALE; PALLIATIVE THERAPY; PERSONAL EXPERIENCE; SEX DIFFERENCE; TERMINAL CARE; ANTICIPATION; AUSTRALIA; CROSS-SECTIONAL STUDY; MULTIVARIATE ANALYSIS; PSYCHOLOGY; SEXUAL DEVELOPMENT; STATISTICAL MODEL;

ANTICIPATION, PSYCHOLOGICAL; AUSTRALIA; CAREGIVERS; CROSS-SECTIONAL STUDIES; FEMALE; HUMANS; LOGISTIC MODELS; MALE; MULTIVARIATE ANALYSIS; PALLIATIVE CARE; SEX CHARACTERISTICS; TERMINAL CARE;

EID: 84942992199     PISSN: 08853924     EISSN: 18736513     Source Type: Journal    
DOI: 10.1016/j.jpainsymman.2015.04.017     Document Type: Article

References (58)

1. D.C. Currow, C.M. Burns, M. Agar, and et al. Palliative caregivers who would not take on the caring role again J Pain Symptom Manage 41 2011 661 672
2. J. Buyck, S. Bonnaud, A. Boumendil, and et al. Informal caregiving and self-reported mental and physical health: results from the Gazel Cohort Study Am J Public Health 101 2011 1971 1979
3. 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 2008 1379 1393
4. G. Grande, S. Aoun, and S. Payne Supporting lay carers in end of life care: current gaps and future priorities Palliat Med 23 2009 339 344
5. L. Pickard A growing care gap? The supply of unpaid care for older people by their adult children in England to 2032 Ageing Soc 35 2015 96 123
6. K.I. Stajduhar, L. Funk, C. Toye, and et al. Part 1: Home-based family caregiving at the end of life: a comprehensive review of published quantitative research Palliat Med 24 2010 573 593
7. L. Funk, K.I. Stajduhar, C. Toye, and et al. Part 2: Home-based family caregiving at the end of life: a comprehensive review of published qualitative research Palliat Med 24 2010 594 607
8. S.M. Aoun, B. Bentley, L. Funk, and et al. A 10-year literature review of family caregiving for motor neurone disease: moving from caregiver burden studies to palliative care interventions Palliat Med 27 2012 437 446
9. M. Navaie-Waliser, P.H. Feldman, D.A. Gould, and et al. When the caregiver needs care: the plight of vulnerable caregivers Am J Public Health 92 2002 409 413
10. M.P. Aranda, and B.G. Knight The influence of ethnicity and culture on the caregiver stress and coping process: a sociocultural review and analysis Gerontologist 37 1997 342 354
11. W.W. van Dijk, M. Zeelenberg, and J. van der Pligt Not having what you want versus having what you do not want: the impact of type of negative outcome on the experience of disappointment and related emotions Cogn Emot 13 1999 129 148
12. I.J. Higginson The quality of expectation: healing, palliation or disappointment J R Soc Med 93 2000 609 610
13. M. Zeelenberg, W.W. van Dijk, A.S.R. Manstead, and J. van der Pligt On bad decisions and disconfirmed expectancies: the psychology of regret and disappointment Cogn Emot 14 2000 521 541
14. J.A. Janzen, J. Silvius, S. Jacobs, and et al. What is a health expectation? Developing a pragmatic conceptual model from psychological theory Health Expect 9 2006 37 48
15. K.C. Calman Quality of life in cancer patients - an hypothesis J Med Ethics 10 1984 124 127
16. A. Thompson, and R. Sunol Expectations as determinants of patient satisfaction: concepts, theory and evidence Int J Qual Health Care 7 1995 127 141
17. R.A. Bell, R.L. Kravitz, D. Thorn, E. Krupat, and R. Azari Unmet expectations for care and the patient-physician relationship J Gen Intern Med 17 2002 817 824
18. R.L. Kravitz Measuring patients' expectations and requests Ann Intern Med 134 2001 881 888
19. J.E. Bialosky, M.D. Bishop, and J.A. Cleland Individual expectation: an overlooked, but pertinent, factor in the treatment of individuals experiencing musculoskeletal pain Phys Ther 90 2010 1345 1355
20. A.F. Mannion, A. Junge, A. Elfering, and et al. Great expectations: really the novel predictor of outcome after spinal surgery? Spine 34 2009 1590 1599
21. C.K. Pager Expectations and outcomes in cataract surgery: a prospective test of 2 models of satisfaction Arch Ophthalmol 122 2004 1788 1792
22. L.D. Seligman, L.A. Wuyek, A.L. Geers, J.D. Hovey, and R.L. Motley The effects of inaccurate expectations on experiences with psychotherapy Cogn Ther Res 33 2009 139 149
23. C. Burns, A.P. Abernethy, E. Dal Grande, and D.C. Currow Uncovering an invisible network of direct caregivers at the end of life. A population study Palliat Med 27 2013 608 615
24. M. Johnson, J. Bowden, A.P. Abernethy, and D.C. Currow To what causes do people attribute their chronic breathlessness? A population survey J Palliat Med 15 2012 744 750
25. E. von Elm, D.G. Altman, M. Egger, and et al. The Strengthening the Reporting of Observational Studies in Epidemiology (STROBE) Statement: guidelines for reporting observational studies Prev Med 45 2007 247
26. M. Koller, W. Lorenz, K. Wagner, and et al. Expectations and quality of life of cancer patients undergoing radiotherapy J R Soc Med 93 2000 621 628
27. R.A. Iles, M. Davidson, N.F. Taylor, and P. O'Halloran Systematic review of the ability of recovery expectations to predict outcomes in non-chronic non-specific low back pain J Occup Rehabil 19 2009 25 40
28. D.G. Finniss, T.J. Kaptchuk, F. Miller, and F. Benedetti Biological, clinical, and ethical advances of placebo effects Lancet 375 2010 686 695
29. H. Brody, and F.G. Miller Lessons from recent research about the placebo effect - from art to science JAMA 306 2011 2612 2613
30. S.G. Pristed, H.K. Omar, and J.P. Kroustrup Association between fulfilment of expectations and health-related quality of life after gastric bypass Appl Res Qual Life 8 2013 101 111
31. B. Levering The language of disappointment: on the language analysis of feeling words Phenomenology + Pedagogy 10 1992 53 74
32. S. Siassi Forgiveness, acceptance and the matter of expectation Int J Psychoanal 88 2007 1423 1440
33. A.P. Abernethy, D.C. Currow, B.S. Fazekas, and et al. Specialized palliative care services are associated with improved short- and long-term caregiver outcomes Support Care Cancer 16 2008 585 597
34. J.L. Jackson, and K. Kroenke The effect of unmet expectations among adults presenting with physical symptoms Ann Intern Med 134 2001 889 897
35. C. Murray Reduce your risk by managing patient expectations Bull Am Coll Surg 93 2008 17 19
36. J.C. Weeks, P.J. Catalano, A. Cronin, and et al. Patients' expectations about effects of chemotherapy for advanced cancer N Engl J Med 367 2012 1616 1625
37. C.K. Daugherty, and F.J. Hlubocky What are terminally ill cancer patients told about their expected deaths? A study of cancer physicians' self-reports of prognosis disclosure J Clin Oncol 26 2008 5988 5993
38. D.C. Currow, K. Allen, J. Plummer, and et al. Bereavement help-seeking following an 'expected' death: a cross-sectional randomised face-to-face population survey BMC Palliat Care 7 2008 19
39. B. McNamara, and L. Rosenwax The mismanagement of dying Health Sociol Rev 16 2007 373 383
40. L.C. Barry, V.S. Kasl, and H.G. Prigerson Psychiatric disorders among bereaved persons: the role of perceived circumstances of death and preparedness for death Am J Geriatr Psychiatry 10 2002 447 457
41. R.S. Herbert, Q. Dang, and R. Schulz Preparedness for the death of a loved one and mental health in bereaved caregivers of patients with dementia: findings from the REACH Study J Palliat Med 9 2006 683 693
42. R.S. Herbert, R. Schulz, V.C. Copeland, and R.M. Arnold Preparing family caregivers for death and bereavement. Insights from caregivers of terminally ill patients J Pain Symptom Manage 37 2009 3 12
43. S. Payne Following bereavement, poor health is more likely in carers who perceived that their support from health services was insufficient or whose family member did not die in the carer's preferred place of death Evid Based Nurs 13 2010 94 95
44. S.M. Aoun, D.C. Currow, and P.L. Hudson Caregiving for the terminally ill: at what cost? Palliat Med 19 2005 551 555
45. D.C. Currow, M. Farquhar, A.M. Ward, and et al. Caregivers' perceived adequacy of support in end-stage lung disease: results of a population survey BMC Pulm Med 11 2011 55
46. B.M. Essue, T. Jowsey, Y. Jeon, and et al. Informal care and self-management partnership: implications for Australian health policy and practice Aust Health Rev 34 2010 414 422
47. 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
48. C. Tishelman, and L. Sachs Hopes and expectations of Swedish cancer patients: contradictions surrounding patient satisfaction with care Psychooncology 1 1992 253 268
49. M. Gibson Death and a mourning in technologically mediated culture Health Sociol Rev 16 2007 415 424
50. C. Seale Dying alone Sociol Health Illness 17 1995 376 392
51. S. Page, and C. Komaromy Professional performance: the case of unexpected and expected deaths Mortality 10 2005 294 307
52. T. Meyer Media portrayals of death and dying Available at: http://www.adec.org/AM/Template.cfm?Section=Resources-and-LinksandTemplate=/CM/ContentDisplay.cfmandContentID=1426 2005 Accessed September 12, 2014
53. D.C. Currow, A.M. Ward, J.L. Plummer, and et al. Comfort in the last 2 weeks of life: relationship to accessing palliative care services Support Care Cancer 16 2008 1255 1263
54. A.P. Abernethy, C.M. 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
55. B. McNamara, and L. Rosenwax Which carers of family members at the end of life need more support from health services and why? Soc Sci Med 70 2010 1035 1041
56. J. Kang, D.W. Shin, J.E. Choi, and et al. Factors associated with positive consequences of serving as a family caregiver for a terminal cancer patient Psychooncology 22 2013 564 571
57. J. Lee, and R. Schulz Gender differences in psychiatric morbidity among family caregivers: a review and analysis Gerontologist 40 2000 147 164
58. A. Bowling, G. Rowe, N. Lambert, and et al. Executive summary - the measurement of patients' expectations for health care: a review and psychometric testing of a measure of patients' expectations Health Technol Assess 16 2012 i xii