Palliative care for families: Remembering the hidden patients

Canadian Journal of Psychiatry

Volumn 49, Issue 6, 2004, Pages 359-365

  Kristjanson, Linda J ^a   Aoun, Samar ^a  

^a EDITH COWAN UNIVERSITY   (Australia)

Author keywords

Caregiving burden; Families; Family caregivers; Family health; Palliative care; Psychosocial care

Indexed keywords

CAREGIVER; EXPERIENCE; FAMILY COUNSELING; FITNESS; HEALTH CARE COST; HEALTH CARE QUALITY; INTERPERSONAL COMMUNICATION; PALLIATIVE THERAPY; PATIENT CARE; PATIENT INFORMATION; PSYCHOLOGICAL ASPECT; PSYCHOSOCIAL CARE; REVIEW; SOCIAL SUPPORT;

EID: 3042734990     PISSN: 07067437     EISSN: None     Source Type: Journal    
DOI: 10.1177/070674370404900604     Document Type: Review

References (49)

1. Kristjanson LJ. Families of palliative care patients: a model for care. In: Aranda S, O'Connor M, editors. Palliative care for nursing: a guide to practice. Richmond, Victoria (Australia): AUSMED Publications; 1999. p 279-93.
2. Addington-Hall J, Higginson I. Palliative care for non-cancer patients. Oxford: Oxford University Press; 2001.
3. Kristjanson LJ, Avery L. Vicarious pain: the family's perspective. Pain Management Newsletter 1994;7(3):1-2.
4. WHO. Palliative care, Geneva: WHO; 2003. Available: http:www.who.int/hiv/ topics/palliative/PalliativeCare.
5. Fried O, Women in palliative care. Paper presented at the 4th Women's Health Conference; 2001 Feb 19-21; Adelaide (South Australia).
6. Grande G, Todd C, Barclay G, Farquhar C, Does hospital at home for palliative care facilitate death at home? Randomised controlled trial, BMJ 1999;319:1472-4.
7. Angus Reid Survey 1997, Available: http://www.caregiver.on.ca/cgddca. html.
8. Chochinov HM, Kristjanson LJ. Dying to pay: the cost of end-of-life care. J Palliat Care 1998;14:5-15.
9. Canadian Palliative Care Association. Standards for palliative care provision, Ottawa: Canadian Palliative Care Association; 1998. Available: http://www.chpca.net/home.htm.
10. Kristjanson LJ, Ashcroft T. The family's cancer journey: a literature review. Cancer Nurs 1994;17:1-17.
11. Kristjanson LJ, Davis, S, The impact of cancer on the family. In: Porock D, Palmer D, editors. Cancer of the gastrointestinal tract, London: Whurr Publishers; 2004. p 51-68.
12. Leis A, Kristjanson LJ, Koop P, Laizner A. Family health and the palliative care trajectory: a research agenda. Cancer Prev Control 1997;1:352-60.
13. Kemp C, Terminal illness: a guide to nursing care, Toronto: JB Lippincott; 1995. p 75-88.
14. Harding R, Higginson I. What is the best way to help caregivers in cancer and palliative care? A systematic review of interventions and their effectiveness. Palliat Med 2003;17:63-74.
15. Wiley S, Who cares for family and friends? Providing palliative care at home, Nursing monograph. Darlinghurst (Australia); St Vincent's Healthcare; 1998. p 4-7, Available: http://www.clininfo.health.nsw.gov.au/hospolic/ stvincents/stvin98/a2.html.
16. Aranda DK, Hayman-White K. Home caregivers of the person with advanced cancer. Cancer Nurs 2001;24:300-7.
17. McCorkle R, Pasacreta JV. Enhancing caregiver outcomes in palliative care. Cancer Control 2001;8:36-45.
18. Kristjanson L, Hudson P, Oldham L. Working with families in palliative care. In: Aranda S, O'Connor M, editors. Palliative care nursing: a guide to practice. 2nd ed. Melbourne (Australia): AUSMED Publications; 2003.
19. Kristjanson LJ, Sloan JA, Dudgeon DJ, Adaskin E. Family members' perceptions of palliative cancer care: predictors of family functioning and family members' health. J Palliat Care 1996;12:10-20.
20. Zisook S, Schucker S. Depression through the first year after the death of a spouse. Am J Psychiatry 1991;148:1346-52.
21. Walker CL. Siblings of children with cancer. Oncol Nurs Forum 1990;3:355-60.
22. Hodgson C, Higginson I, McDonnell M, Butters E. Family anxiety in advanced cancer: a multicentre prospective study in Ireland, Br J Cancer 1997;76:1211-4.
23. Kissane DW, Bloch S. Family grief, Br J Psychiatry 1994;164:728-40.
24. Galloway SC. Young adults' reactions to the death of a parent. Oncol Nurs Forum 1990;17:899-904.
25. Hileman J, Lackey N, Hassanein R, Identifying the needs of home caregivers of patients with cancer. Oncol Nurs Forum 1992;19:771-7.
26. Yates P, Stetz K. Families' awareness of and response to dying. Oncol. Nurs Forum 1999;26:113-20.
27. Ramirez A, Addington-Hall J, Richards M. ABC of palliative care. The carers. BMJ 1998;316:208-11.
28. Byock I. The meaning and value of death. J Palliat Med 2002;5:279-88.
29. Stedeford A. Couples facing death: unsatisfactory communication. BMJ 1981;283:1098-101.
30. Kristjanson LJ, Chalmers K, Taylor-Brown J, Nelson F, Dudgeon D, Woodgate R, and others. Information needs of adolescent children of women with breast cancer. Oncol Nurs Forum 2004;31:111-20.
31. Chalmers K, Kristjanson LJ, Taylor-Brown, J, Nelson F, Dudgeon D, Woodgate R, and others. Perceptions of the role of the school in providing information and support to adolescent children of women with breast cancer. J Adv Nurs 2000;31:1430-8.
32. Northouse PG, Northouse LL. Communication and cancer: issues confronting patients, health professionals, and family members. Journal of Psychosocial Oncology 1998;5:17-45.
33. Kristjanson LJ. Establishing goals of care: communication traps and treatment lane changes. In: Ferrell B, Coyle N, editors. Palliative care nursing. Oxford: Oxford University Press; 2000. p 331-8.
34. Mor V, Masterson-Allen S, Houts P. The changing needs of patients with cancer at home: a longitudinal view. Cancer 1992;69:829-38.
35. Northouse LL, Golden-Peters H. Cancer and the family: strategies to assist spouses, Semin Oncol Nurs 1993;9:74-82.
36. Taylor EJ, Ferrell BR, Grant M, Cheyney L, Managing cancer pain at home: the decisions and ethical conflicts of patients, family caregivers, and homecare nurses. Oncol Nurs Forum 1993;20:919-27.
37. Northouse L. The impact of cancer on the family: an overview. Int J Psychiatr Med 1984;14:215-42.
38. Bottorff JL, Gogag M, Engelberg-Lotzkar M. Comforting: exploring the work of cancer nurses, J Adv Nurs 1995;22:1077-84.
39. McLauchlan CAJ. Handling distressed relatives and breaking bad news. BMJ 1990;301:1145-9.
40. Princess Royal Trust for Carers, Primary carers-identifying and providing support to carers in primary care. Glasgow: Princess Royal Trust for Carers; 2003. Available: www.carers.org.
41. Emanuel EJ, Fairclough DL, Slutsman J, Emanuel LL, Understanding economic and other burdens of terminal illness: the experience of patients and their caregivers. Ann Intern Med 2000;132:451-9.
42. Given BA, Given GW, Stommel M. Family and out-of-pocket costs for women with breast cancer. Cancer Practice: A Multidisciplinary Journal of Cancer Care 1994;2:189-93.
43. Morris S, Thomas C. The carer's place in the cancer situation: where does the carer stand in the medical setting? Eur J Cancer Care 2001:10:87-95.
44. Dying with Dignity. A Canadian Society Concerned With the Quality of Dying. Available: http://www.dyingwithdignity.ca/compassionateLeave2004.html
45. Schofield H, Herrman H, Bloch S, Howe A, Singh B. A profile of Australian family caregivers: diversity of roles and circumstances. Aust N Z J Public Health 1997;21:59-66.
46. Kristjanson LJ, Nikoletti S, Porock D, Smith M, Lobchuk M, Pedler P. Congruence between patients' and family caregivers' perceptions of symptom distress in patients with terminal cancer. J Palliat Care 1998;14(3):24-32.
47. Arno P, Levine S, Memmott M. The economic value of informal caregiving. Health Affairs 1999;18:82-1881.
48. Hudson P. Positive aspects and challenges associated with caring for a dying relative at home. Int J Palliat Nurs 2004;10(2):58-66.
49. Australian Bureau of Statistics. Disability, ageing and carers: summary of findings. ABS Catalogue No 4430.0. Belconnen ACT (Australia): Australian Bureau of Statistics; 1999.