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Family Members Providing Home-Based Palliative Care to Older Adults: The Enactment of Multiple Roles*

Published online by Cambridge University Press:  31 March 2010

Sarah J. Clemmer ,
Catherine Ward-Griffin  and
Dorothy Forbes
Sarah J. Clemmer*
Affiliation:
New Dundee, Ontario
Catherine Ward-Griffin
Affiliation:
University of Western Ontario, Lawson Health Research Institute
Dorothy Forbes
Affiliation:
University of Western Ontario
*
Requests for offprints should be sent to:/Les demandes de tirés-à-part doivent être adressées à: Sarah J. Clemmer, 1197 Bethel Road, R.R. #1, New Dundee, ON N0B 2E0, (sjclemmer@gmail.com)
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Abstract

Canadians are experiencing increased life expectancy and chronic illness requiring end-of-life care. There is limited research on the multiple roles for family members providing home-based palliative care. Based on a larger ethnographic study of client-family-provider relationships in home-based palliative care, this qualitative secondary analysis explores the enactment of multiple roles for family members providing home-based palliative care to seniors with advanced cancer. Family members had multiple expectations to provide care but felt their expectations of services were unmet. The process of enacting multiple roles was depicted by three interrelated themes: balancing, re-prioritizing, and evolving. Positive and negative health responses resulted from attempts to minimize personal health while simultaneously maintaining health. “True” family-centred care was found to be lacking, but should be a goal of health professionals involved in end-of-life care.

Résumé

L'espérance de vie des Canadiens s'accroît et, de ce fait, les maladies chroniques (Santé Canada, 2002) exigeant des soins en fin de vie (Fisher, Ross, & MacLean, 2000). La recherche est limitée sur le processus visant à établir la multiplicité des rôles pour les membres de la famille dispensant des soins palliatifs à domicile. En se fondant sur une étude ethnographique plus vaste des relations client-famille-fournisseur de soins palliatifs à domicile (Ward-Griffin & McWilliam, 2004), la présente analyse secondaire visait à évaluer l'adoption de multiples rôles par les membres de la famille dispensant des soins palliatifs à domicile aux aînés souffrant de cancer avancé. Les membres de la famille étaient d'avis que les attentes envers eux étaient nombreuses lors de la dispensation des soins, mais qu'on ne répondait pas à leurs attentes en matière de services. Jouer des rôles multiples était décrit par trois thèmes interreliés: équilibre des charges, établissement de nouvelles priorités, et évolution. Les réponses positives et négatives en matière de santé découlaient des tentatives de minimiser la santé personnelle tout en maintenant simultanément la santé. Les «véritables» soins de santé dans une perspective familiale étaient absents, mais devraient devenir l'un des objectifs des professionnels de la santé dispensant des soins de santé en fin de vie.

Keywords

vieillissementfamillefournisseurs de soinscommunautésoins palliatifsanalyse secondaire qualitativerecherche interprétativeagingfamilycaregiverscommunitypalliative carequalitative secondary analysisinterpretive research
Type
Articles
Information
Canadian Journal on Aging / La Revue canadienne du vieillissement , Volume 27 , Issue 3 , Fall/Automne 2008 , pp. 267 - 283
Copyright
Copyright © Canadian Association on Gerontology 2008

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Footnotes

*

This study was funded by the Social Sciences and Humanities Research Council of Canada (Canada Graduate Scholarship Master's Scholarship – Award Number 766-2005-0823). Sarah Clemmer completed the following work under the supervision of Catherine Ward-Griffin and Dorothy Forbes in partial fulfilment of the requirements for the degree of Master of Science in Nursing.

References

Alcock, D., Danbrook, C., Walker, D., & Hunt, C. (1998). Home care clients, providers and costs. Canadian Journal of Public Health, 89(5), 297–300.CrossRefGoogle ScholarPubMed
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.Google Scholar
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.Google Scholar
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.CrossRefGoogle ScholarPubMed
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.CrossRefGoogle ScholarPubMed
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.Google Scholar
CCC-CCAN. See Canadian Caregiver Coalition.Google Scholar
CHNAC. See Community Health Nurses Association of CanadaGoogle Scholar
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.CrossRefGoogle ScholarPubMed
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.Google Scholar
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.CrossRefGoogle ScholarPubMed
Denham, S.A. (1999). Part 2: Family heath during and after death of a family member. Journal of Family Nursing, 5(2), 160–183.CrossRefGoogle Scholar
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.Google Scholar
Fast, J.E., & Keating, N.C. (2000). Family caregiving and consequences for carers: Toward a policy research agenda. Ottawa: Canadian Policy Research Networks.Google Scholar
Fisher, R., Ross, M.M., & MacLean, M.J. (2000). A guide to end of life care for seniors. Ottawa: Health Canada.Google Scholar
Gattuso, S., & Bevan, C. (2000). Mother, daughter, patient, nurse: Women's emotion work in aged care. Journal of Advanced Nursing, 31(4), 892–899.CrossRefGoogle ScholarPubMed
Given, B.A., & Given, C.W. (1998). Health promotion for family caregivers of chronically ill elders. Annual Review of Nursing Research, 16, 197–217.CrossRefGoogle ScholarPubMed
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.CrossRefGoogle ScholarPubMed
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.Google ScholarPubMed
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.CrossRefGoogle ScholarPubMed
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.CrossRefGoogle ScholarPubMed
Guberman, N., & Maheu, P. (1999). Combining employment and caregiving: An intricate juggling act. Canadian Journal on Aging, 18, 84–106.CrossRefGoogle Scholar
Guberman, N., Maheu, P., & Maille, C. (1992). Women as family caregivers: Why do they care?. Gerontologist, 32(5), 607–617.CrossRefGoogle ScholarPubMed
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.CrossRefGoogle ScholarPubMed
Heaton, J. (2004). Reworking qualitative data. Thousand Oaks: Sage.CrossRefGoogle Scholar
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.CrossRefGoogle Scholar
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.CrossRefGoogle ScholarPubMed
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.CrossRefGoogle ScholarPubMed
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.CrossRefGoogle ScholarPubMed
Lofland, J., & Lofland, L. (1995). Analyzing social settings: A guide to qualitative observation and analysis. (3rd ed.). Belmont, CA: Wadsworth.Google Scholar
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.Google Scholar
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.CrossRefGoogle ScholarPubMed
Morse, J., & Field, P. (1995). Qualitative research methods for health. (2nd ed.). London: Sage.Google Scholar
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.CrossRefGoogle Scholar
Neal, M.B., Ingersoll-Dayton, B., & Starrels, M.E. (1997). Gender and relationship differences in caregiving patterns and consequences among employed caregivers. Gerontologist, 37(6), 804–816.CrossRefGoogle ScholarPubMed
Noonan, A.E., & Tennstedt, S.L. (1997). Meaning in caregiving and its contribution to caregiver well-being. Gerontologist, 37(6), 785–794.CrossRefGoogle ScholarPubMed
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.CrossRefGoogle Scholar
Payne, S., Smith, P., & Dean, S. (1999). Identifying the concerns of informal carers in palliative care. Palliative Medicine, 13, 37–44.CrossRefGoogle ScholarPubMed
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.Google Scholar
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.Google Scholar
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.CrossRefGoogle ScholarPubMed
RNAO. See Registered Nurses Association of Ontario.Google Scholar
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.CrossRefGoogle Scholar
Ross, M.M., MacLean, M.J., & Fisher, R. (2002). End-of-life care for seniors: Public and professional awareness. Educational Gerontology, 28, 353–366.CrossRefGoogle Scholar
Sandelowski, M. (1997). “To be of use”: Enhancing the utility of qualitative research. Nursing Outlook, 45(3), 125–132.CrossRefGoogle ScholarPubMed
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.CrossRefGoogle ScholarPubMed
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.CrossRefGoogle ScholarPubMed
Stajduhar, K.I., & Davies, B. (2005). Variations in and factors influencing family member's decisions for palliative home care. Palliative Medicine, 19, 21–32.CrossRefGoogle ScholarPubMed
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.Google Scholar
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.CrossRefGoogle Scholar
Stoller, E.P., & Pugliesi, K.L. (1989). Other roles of caregivers: Competing responsibilities or supportive resources. Journal of Gerontology, 44(6), S231–S238.CrossRefGoogle ScholarPubMed
Szabo, V., & Strang, V.R. (1997). Secondary analysis of qualitative data. Advances in Nursing Science, 20(2), 66–74.CrossRefGoogle ScholarPubMed
Thorne, S. (1998). Pearls, pith, and provocation. Ethical and representational issues in qualitative secondary analysis. Qualitative Health Research, 8(4), 547–555.Google Scholar
Ward-Griffin, C. (2004). Nurses as caregivers of elderly relatives: Negotiating personal and professional boundaries. Canadian Journal of Nursing Research, 36, 92–114.Google ScholarPubMed
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.CrossRefGoogle Scholar
Ward-Griffin, C., & Marshall, V. (2003). Reconceptualizing the relationship between “public” and “private” eldercare. Journal of Aging Studies, 17, 189–208.CrossRefGoogle Scholar
Ward-Griffin, C., & McKeever, P. (2000). Relationships between nurses and family caregivers: Partners in care?. Advances in Nursing Science, 22(3), 89–103.CrossRefGoogle ScholarPubMed
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. R2474A08Google Scholar
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.CrossRefGoogle ScholarPubMed
Wuest, J. (2001). Precarious ordering: Toward a formal theory of women's caring. Health Care for Women International, 22, 167–193.CrossRefGoogle Scholar