This literature review exposes the nature and extent of physical and psychosocial morbidity and economic disadvantage, home palliative caregivers suffer as a direct result of their caregiving role. Research has demonstrated that caregivers providing support to individuals receiving palliative care report unmet needs for information, communication, service provision and support from health and community services. Three sets of challenges are highlighted in this literature review which help explain why the needs of home palliative caregivers are largely unmet: (i) barriers to seeking help; (ii) a dearth of research-based interventions focused on reducing the negative aspects of caregiving; and (iii) a number of impediments to effective policy and service development for family caregivers. Furthermore, invited submissions from caregivers echoed and confirmed the issues reported in the literature. Recommendations for enhancing caregiver support are outlined.
Australian Bureau of Statistics . Disability, ageing and carers: summary of findings. ABS: Australian Bureau of Statistics , 1999.
2.
McCorkle R , Pasacreta J.Enhancing caregiver outcomes in palliative care . Cancer Control2001; 8: 36-45 .
3.
Palliative Care Australia . Australia’s future in palliative care research: a collaborative approach. Canberra: PCA , 2000.
4.
Palliative Care Australia . State of the Nation 1998 - report of the National Census of Palliative Care Services. Yarraluma: Palliative Care Australia , 1999.
5.
Robbins M.Evaluating palliative care: establishing the evidence base. Oxford: Oxford University Press , 1998.
6.
Hudson P.Home-based support for palliative care families: challenges and recommendations . Med J Aust2003; 179: S35-S37 .
7.
NSW Health Palliative Care Working Party . NSW Health Palliative Care Working Party. New South Wales: Department of Health , 1998.
8.
Grande G , Addington-Hall J , Todd C.Place of death and access to home care services: are certain patients groups at a disadvantage?Soc Sci Med1998; 47: 565-579 .
9.
Chochinov H , Kristjanson L.Dying to pay: the cost of end of life care . J Palliat Care1998; 14: 5-15 .
10.
Aranda S , Hayman-White K.Home caregivers of the person with advanced cancer . Cancer Nurs2001; 24: 300-307 .
11.
Yates P.Family coping: issues and challenges for cancer nursing . Cancer Nurs1999; 22: 63-71 .
12.
Kristjanson L , Hudson P , Oldham L.Working with families in palliative care. In O’Connor M , Aranda S eds Palliative care nursing: a guide to practice, second edition. Melbourne: AUSMED Publications , 2003.
13.
Palliative Care Australia . The Hardest thing we have ever done - the social impact of caring for terminally ill people in Australia, 2004. Canberra: PCA ; May 2004.
14.
Rose K.A qualitative analysis of the information needs of informal carers of terminally ill cancer patients . J Clin Nurs1999; 8: 81-88 .
15.
Grbich C , Parker D , Maddocks I.The emotions and coping strategies of caregivers of family members with a terminal cancer . J Palliat Care2001; 17: 30-36 .
16.
Kristjanson L , White K.Clinical support for families in the palliative care phase of hematologic or oncologic illness . Hematol Oncol Clin N Am2002; 16: 745-762 .
17.
Pasacreta J , McCorkle R.Cancer care: impact of interventions on caregiver outcomes . Annu Rev Nurs Res2000; 18: 127-148 .
18.
Steele R , Fitch M.Needs of family caregivers of patients receiving home hospice care for cancer . Oncol Nurs Forum1996b; 23: 823-828 .
19.
Rose K , Webb C , Wayers K.Coping strategies employed by informal carers of terminally ill cancer patients . J Cancer Nurs1997; 1: 126-133 .
20.
Kristjanson L , Sloan J , Dudgeon D , Adaskin E.Family members’ perceptions of palliative care cancer care: predictors of family functioning and family members’ health . J Palliat Care1996; 12: 10-20 .
21.
Stajduhar K , Davies B.Death at home: challenges for families and directions for the future . J Palliat Care1998; 14: 8-14 .
22.
Vachon M.Psychosocial needs of patients and families . J Palliat Care1998; 14: 49-56 .
23.
McGrath P.Returning home after specialist treatment for hematological malignancies. An Australian study . Fam Community Health2001b; 24: 36-48 .
24.
Ramirez A , Addington-Hall J , Richards M.ABC of palliative care: the carers . BMJ1998; 316: 208-211 .
25.
Schulz R , Beach S.Caregiving as a risk factor for mortality - the caregiver health effects study . J Am Med Assoc1999; 282: 2215-2219 .
26.
Christakis N , Iwashna T.The health impact of health care on families: a matched cohort study of hospice use by decendents and mortality outcomes in surviving, widowed spouses . Soc Sci Med2003; 57: 465-475 .
27.
Emanuel E , Fairclough D , Slutsman J , Emanuel L.Understanding economic and other burdens of terminal illness: the experience of patients and their caregivers . Ann Intern Med2000; 132: 451-459 .
28.
Given B , Given G , Stommel M.Family and out-of-pocket costs for women with breast cancer . Cancer Pract1994; 2: 189-193 .
29.
Hudson P , Aranda S , McMurray N. Intervention development for enhanced lay palliative caregiver support - the use of focus groups . Eur J Cancer Care2002; 11: 262-270 .
30.
Harding R , Higginson I.What is the best way to help caregivers in cancer and palliative care? A systematic literature review of interventions and their effectiveness . Palliat Med2003; 17: 63-74 .
31.
Hudson PL , Aranda S , Hayman-White K.A psycho educational intervention for family caregivers of patients receiving palliative care: a randomised controlled trial . J Pain Symptom Manage, in press.
32.
Hudson P , Aranda S , Kristjanson L.Meeting the supportive needs of family caregivers in palliative care: challenges for health professionals . J Palliat Med2004; 7: 19-25 .
33.
Payne T , Ehrlich F.Coping at home: carers’ use and nonuse of community services. Carers NSW Inc. , 1998.
34.
Barg F , Pasacreta J , Nuamah I , Robinson K , Angeletti K , Yasko J.A description of a psychoeducational intervention for family caregivers of cancer patients . J Fam Nurs1998; 4: 394-413 .
35.
Palliative Care Australia . Strategic plan 2000-2003. Canberra , 2000.
36.
Hudson P , Aranda S , Kristjanson L.Supportive information provision for palliative care families: moving toward evidence based practice . Eur J Palliat Care2004; 11: 153-157 .
37.
Hudson P , Aranda S , McMurray N.Randomised control trials in palliative care: overcoming the obstacles . Int J Palliat Nurs2001; 7: 427-434 .
38.
Schofield H , Bozic S , Herrman H , Singh B.Family carers: some impediments to effective policy and service development . Aust J Soc Issues1996; 31: 157-165 .
39.
Schofield H , Murphy B , Nankervis J , Singh B.Family carers: women and men, adult offspring, partners and parents . J Fam Stud1997; 3: 149-168 .
40.
Audit Commission . Support for carers of older people. Retrieved September, 2004, from www.audit-commission.gov.uk/reports
41.
Lloyd E.Promoting the health and wellbeing of informal carers: how effective are contemporary policies?Access AIHW2003; 13: 12-13 .
42.
Briggs H , Fisher D.Warning - caring is a health hazard. Canberra: Carers Association of Australia , 2000.
43.
The Standing Senate Committee on Social Affairs Science and Technology . The health of Canadians (2002). The health of Canadians , 2003.
44.
Australian Institute of Health and Welfare . Australia’s welfare 2003, Cat No. AUS-41. AIHW , 2003.
45.
Princess Royal Trust for Carers . Primary carers - identifying and providing support to carers in primary care. Princess Royal Trust for Carers , 2003.
