Perspectives from the frontlines: Palliative care providers' expectations of Canada's compassionate care benefit programme

Health and Social Care in the Community

Volumn 18, Issue 6, 2010, Pages 643-652

  Giesbrecht, Melissa ^a   Crooks, Valorie A ^a   Williams, Allison ^b  

^a SIMON FRASER UNIVERSITY   (Canada)

^b MCMASTER UNIVERSITY   (Canada)

Author keywords

Access to support; Canada; Home care; Informal carers; Palliative care; Policy research

Indexed keywords

ARTICLE; CANADA; CAREGIVER; EMPATHY; EVALUATION; HEALTH CARE POLICY; HEALTH SERVICES RESEARCH; HOME CARE; HUMAN; INFORMATION PROCESSING; METHODOLOGY; PALLIATIVE THERAPY; PATIENT CARE; PROGRAM DEVELOPMENT; PSYCHOLOGIC TEST; PSYCHOLOGICAL ASPECT; QUALITATIVE RESEARCH; SOCIAL SUPPORT; TIME;

CANADA; CAREGIVERS; DATA COLLECTION; EMPATHY; HEALTH POLICY; HEALTH SERVICES RESEARCH; HOME CARE SERVICES; HUMANS; INTERVIEW, PSYCHOLOGICAL; PALLIATIVE CARE; PATIENT CARE; PROGRAM DEVELOPMENT; QUALITATIVE RESEARCH; SOCIAL SUPPORT; TIME FACTORS;

EID: 78649464371     PISSN: 09660410     EISSN: 13652524     Source Type: Journal    
DOI: 10.1111/j.1365-2524.2010.00937.x     Document Type: Article

References (40)

1. Bacon J. (2008) Hospice Palliative Home Care in Canada: A Progress Report. Quality End-of-Life Care Coalition of Canada, Ottawa.
2. Bradley E.H., Curry L.A. & Devers K.J. (2007) Qualitative data analysis for health services research: developing taxonomy, themes, and theory. Health Services Research 42 (4), 1758-1769.
3. Burge F., Lawson B. & Johnston G. (2003) Trends in the place of death of cancer patients. CMAJ 168 (3), 265-270.
4. Canadian Cancer Society (CCS). (2008) Public Opinion Study of Employment Insurance Benefits for Caregivers. Innovated Research Group Inc, Toronto, Ontario.
5. Canadian Caregiver Coalition (CCC). (2004) Working Paper for a Canadian Caregiving Strategy - Draft. Canadian Caregiver Coalition Policy Paper Series, Number 3, Ottawa, Ontario.
6. Canadian Home Care Association (CHCA). (2008) Home Care: The Next Essential Service. Retrieved April 1, 2009 from:
7. Canadian Policy Research Network (CPRN). (2009) Working and looking after mom and dad: the face of caregiving in Canada. Retrieved July 3, 2009 from:
8. Cherlin E.J., Barry C.L., Prigerson H.G., et al. (2007) Bereavement services for family caregivers: how often used, why, and why not. Journal of Palliative Medicine 10 (1), 148-158.
9. Christakis N.A. & Lamont E.B. (2000) Extent and determinants of error in doctors' prognoses in terminally ill patients: prospective cohort study. BMJ 320, 469-472.
10. Crooks V.A. & Williams A. (2008) An evaluation of Canada's Compassionate Care Benefit from a family caregiver's perspective at end of life. BMC Palliative Care 7, 14.
11. Crooks V.A., Williams A., Stajduhar K.I., Allan D.E. & Cohen R. (2007) The information transfer and knowledge acquisition geographies of family caregivers: an analysis of Canada's Compassionate Care Benefit. Canadian Journal of Nursing Research 39 (3), 36-54.
12. Daugherty C.K. & Hlubocky F.J. (2008) What are terminally ill cancer patients told about their expected deaths? A study of cancer physicians' self-reports of prognosis disclosure. Journal of Clinical Oncology 26, 5988-5993.
13. Fereday J. & Muir-Cochrane E. (2006) Demonstrating rigor using thematic analysis: a hybrid approach of inductive and deductive coding and theme development. International Journal of Qualitative Methods 5, 1.
14. Giesbrecht M., Crooks V.A., Schuurman N. & Williams A. (2009) Spatially informed knowledge translation: informing potential users of Canada's Compassionate Care Benefit. Social Science & Medicine 69 (3), 411-419.
15. Glare P., Sinclair C., Downing M., Stone P., Maltoni M. & Vigano A. (2008) Predicting survival in patients with advanced disease. European Journal of Cancer 44, 1146-1156.
16. Gomes B. & Higginson I.J. (2006) Factors influencing death at home in terminally ill patients with cancer: systematic review. BMJ 332 (7540), 515-521.
17. Grande G.E., McKerral A. & Todd C.J. (2002) Which cancer patients are referred to hospital at home for palliative care? Palliative Medicine 16 (2), 115-123.
18. Grunsfeld E., Coyle D., Whelan T., et al. (2004) Family caregiver burden: results of a longitudinal study of breast cancer and their principal caregivers. CMAJ 170 (12), 1795-1801.
19. Health Canada (2002) National Profile of Family Caregivers in Canada - 2002: Final Report. Retrieved March 26, 2008 from:
20. Human Resources Social Development Canada (HRSDC). (2007) 2007 monitoring and assessment report. Retrieved March 23, 2009 from:
21. Jansen L., Markle-Reid M., Hawranik P., et al. (2009) Formal care providers' perceptions of home and community-based services: informing dementia care quality. Home Health Care Services Quarterly 28, 1-23.
22. Keefe J., Fancey P., Guberman N., Barylak L. & Nahmiash D. (2008) Caregivers' aspirations, realities, and expectations: the care tool. Journal of Applied Gerontology 27 (3), 286-308.
23. Keefe J., Fancey P. & White S. (2005) Consultation on Financial Compensation Initiatives for Family Caregivers of Dependent Adults: Final Report. Mount Saint Vincent University, Halifax.
24. Lilly M.B. (2008) Medical versus social work-places: constructing and compensating the personal support worker across health care settings in Ontario, Canada. Gender, Place & Culture 15 (3), 285-299.
25. Lynn J. (2001) Perspectives on care at the close of life. Serving patients who may die soon and their families: the role of hospice and other services. JAMA 285, 925-932.
26. Lynse L. (2007) Creating Strategies to Support Canada's Caregivers: 2007 and beyond. A discussion paper for a consultation meeting hosted by the J.W. McConnell Family Foundation. Retrieved January 26, 2009 from:
27. Mackenzie C.S., Smith M.C., Hasher L., Leach L. & Behl P. (2007) Cognitive functioning under stress: evidence from informal caregivers of palliative patients. Journal of Palliative Medicine 10 (3), 749-758.
28. Massarotto A., Carter H., Macleod R. & Donaldson N. (2000) Hospital referral to hospice: timing of referrals, referee's expectations, and the nature of referral information. Journal of Palliative Care 16 (3), 22-29.
29. Osborne K. & Margo N. (2005) Compassionate Care Benefit: Analysis and Evaluation. Health Council of Canada, Toronto.
30. Patton M.Q. (1997) Utilization-Focused Evaluation, 3rd edn. Sage, Thousand Oaks, CA.
31. Penz K. (2008) What are the potential factors that sustain registered nurses who provide home-based palliative and end-of-life care? Journal of Hospice and Palliative Nursing 10 (5), 295-303.
32. Quality End-of-Life Care Coalition Canada (QELCCC). (2005) Submission to the 5 year Report of the Senate Subcommittee Final Report Quality End of Life Care: The Right of Every Canadian. Retrieved July 6, 2009 from:
33. Schockett E.R., Teno J.M., Miller S.C. & Stuart B. (2005) Late referral to hospice and bereaved family member perception of quality of end of life care. Journal of Pain and Symptom Management 30 (5), 400-407.
34. Schulz R. & Beach S.R. (1999) Caregiving as a risk factor for mortality: the caregiver health effects study. JAMA 282 (23), 2215-2219.
35. Service Canada. (2009) Employment Insurance (EI) Compassionate Care Benefits. Retrieved July 3, 2009 from:
36. Skinner M.W. & Rosenberg M.W. (2005) Co-opting voluntarism? Exploring the implications of long-term care reform for the nonprofit sector in Ontario. Environment and Planning C: Government and Policy 23 (1), 101-121.
37. Weber R.P. (1990) Basic Content Analysis, 2nd edn. Sage, Newbury Park, CA.
38. Wennman-Larsen A. & Tishelman C. (2002) Advanced home care for cancer patients at the end of life: a qualitative study of hopes and expectations of family caregivers. Scandinavian Journal of Caring Science 16 (3), 240-247.
39. Williams A., Crooks V.A., Stajduhar K., Allan D. & Cohen R. (2006) Canada's compassionate care benefit: views of family caregivers in chronic illness. International Journal of Palliative Nursing 12 (9), 438-445.
40. World Health Organization (WHO). (2008) The Solid Facts: Home Care in Europe. Retrieved February 12 from: