Family members providing home-based palliative care to older adults: The enactment of multiple roles

Canadian Journal on Aging

Volumn 27, Issue 3, 2008, Pages 267-283

  Clemmer, Sarah J ^a   Ward Griffin, Catherine ^b   Forbes, Dorothy ^b  

^a Lawson Health Research Institute ^*  (Canada)

^b UNIVERSITY OF WESTERN ONTARIO   (Canada)

Author keywords

Aging; Caregivers; Community; Family; Interpretive research; Palliative care; Qualitative secondary analysis

Indexed keywords

EID: 60749101004     PISSN: 07149808     EISSN: 17101107     Source Type: Journal    
DOI: 10.3138/cja.27.3.285     Document Type: Article

References (60)

1. Alcock, D., Danbrook, C., Walker, D., & Hunt, C. (1998). Home care clients, providers and costs. Canadian Journal of Public Health, 89(5), 297-300.
2. Armstrong, P.A. (2002). Health care privatization: Women are paying the price. Canadian Women's Health Network Magazine, 5(2/3). Retrieved April 13, 2005, from http://www.cwhn.ca/network-reseau/5-3/5-3pg3.html.
3. Armstrong, P., & Armstrong, H. (2004). Thinking it through: Women, work and caring in the new millennium. In Grant, K.R., Amaratunga, C., Armstrong, P., Boscoe, M., Pederson, A., Willson, K. (Eds.), Caring for/caring about: Women, home care, and unpaid caregiving (pp. 5-43). Aurora, ON: Garamond.
4. Brazil, K., Bedard, M., Willison, K., & Hode, M. (2003). Caregiving and its impact on families of the terminally ill. Aging and Mental Health, 7(5), 376-382.
5. Cameron, J.I., Franche, R.L., Cheung, A.M., & Stewart, D.E. (2002). Lifestyle interference and emotional distress in family caregivers of advanced cancer patients. Cancer, 94(2), 521-527.
6. Canadian Caregiver Coalition. (2005). Framework for a Canadian caregiving strategy. Canadian Caregiver Coalition Policy Paper Series, 4. Retrieved October 25, 2006, from http://www.ccc-ccan.ca/media.php?mid=58.
7. CCC-CCAN. See Canadian Caregiver Coalition.
8. CHNAC See Community Health Nurses Association of Canada
9. Cohen, R., Leis, A.M., Kuhl, D., Charbonneau, C., Ritvo, P., & Ashbury, F.D. (2006). QOLLTI-F: Measuring family carer quality of life. Palliative Medicine, 20(8), 755-767.
10. Community Health Nurses Association of Canada. (2003). Canadian Community Health Nursing Standards of Practice. Retrieved November 14, 2005, from http://www.chnac.ca/images/downloads/standards/chn-standards-of-practice- mar08-english.pdf.
11. Dautzenberg, G.H., Diederiks, J.P.M., Philipsen, H., & Tan, F.E.S. (1999). Multigenerational caregiving and well-being: Distress of middle-aged daughters providing assistance to elderly parents. Women & Health, 29(4), 57-74.
12. Denham, S.A. (1999). Part 2: Family heath during and after death of a family member. Journal of Family Nursing, 5(2), 160-183.
13. Fast, J.E., Forbes, D.A., & Keating, N.C. (1999). Contributions and needs of informal elder care providers in Canada: Evidence from Statistics Canada's 1996 General Social Survey on social support. Edmonton: Health Promotion and Programs Branch, Health Canada.
14. Fast, J.E., & Keating, N.C. (2000). Family caregiving and consequences for carers: Toward a policy research agenda. Ottawa: Canadian Policy Research Networks.
15. Fisher, R., Ross, M.M., & MacLean, M.J. (2000). A guide to end of life care for seniors. Ottawa: Health Canada.
16. Gattuso, S., & Bevan, C. (2000). Mother, daughter, patient, nurse: Women's emotion work in aged care. Journal of Advanced Nursing, 31(4), 892-899.
17. Given, B.A., & Given, C.W. (1998). Health promotion for family caregivers of chronically ill elders. Annual Review of Nursing Research, 16, 197-217.
18. Given, B., Wyatt, G., Given, C., Sherwood, P., Gift, A., DeVoss, D., & Rahbar, M. (2004). Burden and depression among caregivers of patients with cancer at the end of life. Oncology Nursing Forum, 31(6), 1105-1117.
19. Glajchen, M. (2004). The emerging role and needs of family caregivers in cancer care. Journal of Supportive Oncology, 2(2), 145-155. Retrieved April 8, 2005 from http://www.supportiveoncology.net/journal/articles/020145. pdf.
20. Glaser, K., Evandrou, M., & Tomassini, C. (2005). The health consequences of multiple roles at older ages in the UK. Health and Social Care in the Community, 13(5), 470-477.
21. Grbich, C., Parker, D., & Maddocks, I. (2001). The emotions and coping strategies of caregivers of family members with a terminal cancer. Journal of Palliative Care, 17, 30-36.
22. Guberman, N., & Maheu, P. (1999). Combining employment and caregiving: An intricate juggling act. Canadian Journal on Aging, 18, 84-106.
23. Guberman, N., Maheu, P., & Maille, C. (1992). Women as family caregivers: Why do they care? Gerontologist, 32(5), 607-617.
24. Harding, R., Higginson, I.J., & Donaldson, N. (2003). The relationship between patient characteristics and carer psychological status in home palliative cancer care. Supportive Care in Cancer, 11(10), 638-643.
25. Heaton, J. (2004). Reworking qualitative data. Thousand Oaks: Sage.
26. Hinds, P.S., Vogel, R.J., & Clarke-Steffen, L. (1997). The possibilities and pitfalls of doing a secondary analysis of a qualitative data set. Qualitative Health Research, 7(3), 408-424.
27. Hudson, P.L., Aranda, S., & Hayman-White, K. (2005). A psycho-educational intervention for family caregivers of patients receiving palliative care: A randomized controlled trial. Journal of Pain and Symptom Management, 30(4), 329-341.
28. Kim, Y., Baker, F., Spillers, R.L., & Willisch, D.K. (2006). Psychological adjustment of cancer caregivers with multiple roles. Psycho-Oncology, 15(9), 795-804.
29. Koop, P.M., & Strang, V.R. (2003). The bereavement experience following home-based family caregiving for persons with advanced cancer. Clinical Nursing Research, 12(2), 127-144.
30. Lofland, J., & Lofland, L. (1995). Analyzing social settings: A guide to qualitative observation and analysis. (3rd ed.) Belmont, CA: Wadsworth.
31. Lofland, J., Snow, D.A., Anderson, L., & Lofland, L.H. (2005). Analyzing social settings: A guide to qualitative observation and analysis. (4th ed.) Belmont, CA: Wadsworth/Thomson Learning.
32. McMullin, J.A. (2005). Patterns of paid and unpaid work: The influence of power, social context, and family background. Canadian Journal on Aging, 24(3), 225-236.
33. Morse, J., & Field, P. (1995). Qualitative research methods for health. (2nd ed.) London: Sage.
34. Murphy, B., Schofield, H., Nankervis, J., Bloch, S., Herrman, H., & Singh, B. (1997). Women with multiple roles: The emotional impact of caring for ageing parents. Ageing and Society, 17, 277-291.
35. Neal, M.B., Ingersoll-Dayton, B., & Starreis, M.E. (1997). Gender and relationship differences in caregiving patterns and consequences among employed caregivers. Gerontologist, 37(6), 804-816.
36. Noonan, A.E., & Tennstedt, S.L. (1997). Meaning in caregiving and its contribution to caregiver well-being. Gerontologist, 37(6), 785-794.
37. Norton, T.R., Stephens, M.A.P., Martire, L.M., Townsend, A.L., & Gupta, A. (2002). Change in the centrality of women's multiple roles: Effects of role stress and rewards. Journal of Gerontology, 57B, S52-S62.
38. Payne, S., Smith, P., & Dean, S. (1999). Identifying the concerns of informal carers in palliative care. Palliative Medicine, 13, 37-44.
39. Registered Nurses Association of Ontario. (2002). Nursing best practice guidelines: Supporting and strengthening families through expected and unexpected life events. Retrieved November 16, 2005, from http://www.rnao.org/Storage/15/944-BPG-Family-Rev06.pdf.
40. Registered Nurses Association of Ontario. (2006). Nursing best practice guidelines: Supporting and strengthening families through expected and unexpected life events supplement. Retrieved August 8, 2006, from http://www.rnao.org/Storage/15/945-BPG-Family-supplement.pdf.
41. Richardson, J. (2002). Health promotion in palliative care: The patient's perceptions of therapeutic interaction with the palliative nurse in the primary care setting. Journal of Advanced Nursing, 40(4), 432-440.
42. RNAO. See Registered Nurses Association of Ontario
43. Ross, M.M., MacLean, M.J., Cain, R., Sellick, S., & Fisher, R. (2001). End of life care: The experience of seniors and informal caregivers. Canadian Journal on Aging, 21, 137-146.
44. Ross, M.M, MacLean, M.J., & Fisher, R. (2002). End-of-life care for seniors: Public and professional awareness. Educational Gerontology, 28, 353-366.
45. Sandelowski, M. (1997). "To be of use": Enhancing the utility of qualitative research. Nursing Outlook, 45(3), 125-132.
46. Schumacher, K.L., Stewart, B.J., & Archbold, P.G. (2007). Mutuality and preparedness moderate the effects of caregiving demand on cancer family caregiver outcomes. Nursing Research, 56(6), 425-433.
47. Stajduhar, K.I. (2003). Examining the perspectives of family members involved in the delivery of palliative care at home. Journal of Palliative Care, 19, 27-35.
48. Stajduhar, K.I., & Davies, B. (2005). Variations in and factors influencing family member's decisions for palliative home care. Palliative Medicine, 19, 21-32.
49. Statistics Canada. (2006). A portrait of seniors in Canada. Retrieved May 10, 2007, from http://www.statcan.ca/english/freepub/89-519-XIE/ 89-519-XIE2006001.pdf.
50. Stephens, M.A.P., Townsend, A.L., Martire, L.M., & Druley, J.A. (2001). Balancing parent care with other roles: Interrole conflict of adult daughter caregivers. Journal of Gerontology, 56B, P24-P34.
51. Stoller, E.P., & Pugliesi, K.L. (1989). Other roles of caregivers: Competing responsibilities or supportive resources. Journal of Gerontology, 44(6), S231-S238.
52. Szabo, V., & Strang, V.R. (1997). Secondary analysis of qualitative data. Advances in Nursing Science, 20(2), 66-74.
53. Thorne, S. (1998). Pearls, pith, and provocation. Ethical and representational issues in qualitative secondary analysis. Qualitative Health Research, 8(4), 547-555.
54. Ward-Griffin, C. (2004). Nurses as caregivers of elderly relatives: Negotiating personal and professional boundaries. Canadian Journal of Nursing Research, 36, 92-114.
55. Ward-Griffin, C., Brown, J.B., Vandervoort, A., McNair, S., & Dashnay, I. (2005). Double-duty caregiving: Women in the health professions. Canadian Journal on Aging, 24(4), 379-394.
56. Ward-Griffin, C., & Marshall, V. (2003). Reconceptualizing the relationship between "public" and "private" eldercare. Journal of Aging Studies, 17, 189-208.
57. Ward-Griffin, C., & McKeever, P. (2000). Relationships between nurses and family caregivers: Partners in care? Advances in Nursing Science, 22(3), 89-103.
58. Ward-Griffin, C., & McWilliam, C. (2004). Exploring client-family-nurse relationships in home-based palliative care for seniors. Pilot Program Grant, Canadian Institutes of Health Research, grant contract no. R2474A08.
59. Woodward, C.A., Abelson, J., Tedford, S., & Hutchison, B. (2004). What is important to continuity in home care? Perspectives of key stakeholders. Social Science and Medicine, 58, 177-192.
60. Wuest, J. (2001). Precarious ordering: Toward a formal theory of women's caring. Health Care for Women International, 22, 167-193.