Hostname: page-component-78c5997874-xbtfd Total loading time: 0 Render date: 2024-11-17T14:57:13.719Z Has data issue: false hasContentIssue false
  • English
  • Français

Palliative family caregivers' accounts of health care experiences: The importance of “security”

Published online by Cambridge University Press:  26 November 2009

Laura M. Funk ,
Diane E. Allan  and
Kelli I. Stajduhar
Laura M. Funk*
Affiliation:
Centre on Aging, University of Victoria, Victoria, British Columbia, Canada
Diane E. Allan
Affiliation:
Centre on Aging, University of Victoria, Victoria, British Columbia, Canada
Kelli I. Stajduhar
Affiliation:
Centre on Aging, University of Victoria, Victoria, British Columbia, Canada School of Nursing, University of Victoria, Victoria, British Columbia, Canada
*
Address correspondence and reprint requests to: Laura M. Funk, Centre on Aging, Sedgewick A104, PO Box 1700 STN CSC, University of Victoria, Victoria, BC, V8W 2Y2Canada. E-mail: [email protected]
Get access Rights & Permissions [Opens in a new window]

Abstract

Objective:

When providing care for a loved one with a terminal illness, family members often look to health care providers for guidance and expertise. The objective of this study is to explore family caregiver accounts of their experiences within the health care system and with individual providers.

Methods:

A thematic analysis of secondary qualitative data was performed. Data are from a subsample of bereaved and current family caregivers (N = 31) in a prior study of coping in end-of-life cancer situations. Data from these participants referring to experiences with health care providers was thematically coded and the concept of “security” was used as an analytic lens to facilitate conceptual development and exploration.

Results:

Considered together, the findings can be viewed as manifestations of a need and desire for security in palliative family caregiving. Specifically, family caregivers' accounts illustrate the importance of feeling secure that health care services will be provided by competent professionals; feeling secure in their timely access to needed care, services, and information; and feeling secure in their own identity and self-worth as a caregiver and individual. In addition, the findings suggest a conceptualization of security that extends beyond trust in individuals to include a generalized sense of institutional trust in the health care system.

Significance of results:

The concept of security moves beyond description of individual satisfaction or dissatisfaction with health care to identify a common, foundational need underlying such evaluations. Further empirical research is needed that explicitly focuses on caregivers' experiences of security and insecurity in the domains identified in this article. This will contribute to theory building as well as assist in identifying the causes and consequences of security.

Keywords

Family caregivingPalliativeSecurityHealth care satisfaction
Type
Original Articles
Information
Palliative & Supportive Care , Volume 7 , Issue 4 , December 2009 , pp. 435 - 447
Copyright
Copyright © Cambridge University Press 2009

Access options

Get access to the full version of this content by using one of the access options below. (Log in options will check for institutional or personal access. Content may require purchase if you do not have access.)

References

REFERENCES

Albinsson, L. & Strang, P. (2003). Differences in supporting families of dementia patients and cancer patients: A palliative perspective. Palliative Medicine, 17, 359–367.Google Scholar
Andershed, B. (2006). Relatives in end-of-life care—Part 1: A systematic review of the literature the five last years, January 1999–February 2004. Journal of Clinical Nursing, 15, 1158–1169.Google Scholar
Anderson, F., Downing, G.M., Hill, J., et al. (1996). Palliative Performance Scale (PPS): A new tool. Journal of Palliative Care, 12, 5–11.Google Scholar
Anderson, J. (1996). Empowering patients: Issues and strategies. Social Science and Medicine, 43, 697–705.Google Scholar
Beach, M.C., Sugarman, J., Johnson, R.L., et al. (2005). Do patients treated with dignity report higher satisfaction, adherence, and receipt of preventive care? Annals of Family Medicine, 3, 331–338.Google Scholar
Bernard, H.K., Pelto, P., Werner, O., et al. (1986). The construction of primary data in cultural anthropology. Current Anthropology, 27, 382–396.CrossRefGoogle Scholar
Broback, G. & Bertero, C. (2003). How next of kin experience palliative care of relatives at home. European Journal of Cancer Care, 12, 339–346.CrossRefGoogle ScholarPubMed
Coyle, J. (1999). Exploring the meaning of “dissatisfaction” with health care: The importance of “personal identity threat.” Sociology of Health and Illness, 21, 95–124.CrossRefGoogle Scholar
Dale, A., Arber, S. & Procter, M. (1988). Doing Secondary Analysis. London: Unwin Hyman.Google Scholar
Donaldson, C., Lloyd, P. & Lupton, D. (1991). Primary health care consumerism amongst elderly Australians. Age and Ageing, 20, 280–286.Google Scholar
Ewing, G., Rogers, M., Barclay, S., et al. (2004). Recruiting patients into a primary care based study of palliative care: Why is it so difficult? Palliative Medicine, 18, 452–459.CrossRefGoogle ScholarPubMed
Goldschmidt, D., Schmidt, L., Krasnik, A., et al. (2006). Expectations to and evaluation of a palliative home-care team as seen by patients and carers. Supportive Care in Cancer, 14, 1232–1240.Google Scholar
Glaser, B. & Strauss, A. (1967). The Discovery of Grounded Theory: Strategies for Qualitative Research. Hawthorne, NY: Aldine.Google Scholar
Grande, G.E. & Todd, C.J. (2000). Why are trials in palliative care so difficult? Palliative Medicine, 14, 69–74.CrossRefGoogle ScholarPubMed
Guberman, N., Gagnon, E., Cote, D., et al. (2005). How the trivialization of the demands of high-tech care in the home is turning family members into para-medical personnel. Journal of Family Issues, 26, 247–272.CrossRefGoogle Scholar
Heaton, J. (2004). Reworking Qualitative Data. London, UK: Sage.CrossRefGoogle Scholar
Heyland, D.K., Dodek, P., Rocker, G., et al. (2006). What matters most in end-of-life care: Perceptions of seriously ill patients and their family members. Canadian Medical Association Journal, 174, 627.CrossRefGoogle ScholarPubMed
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, 408–422.Google Scholar
Hyman, H.H. (1972). Secondary Analysis of Sample Surveys: Principles, Procedures and Potentialities. New York: John Wiley.Google Scholar
Ingleton, C. (1999). The views of patients and carers on one palliative care service. International Journal of Palliative Nursing, 5, 187–195.Google Scholar
Jordhoy, M.S., Kaasa, S., Fayers, P., et al. (1999). Challenges in palliative care research, recruitment, attrition and compliance: Experience from a randomized controlled trial. Palliative Medicine, 13, 299–310.Google Scholar
King, N., Bell, D. & Thomas, K. (2004). Family carers' experiences of out-of-hours community palliative care: A qualitative study. International Journal of Palliative Nursing, 10, 76–83.Google Scholar
Kristjanson, L.J., Cousins, K., White, K., et al. (2004). Evaluation of a night respite community palliative care service. International Journal of Palliative Nursing, 10, 84–90.CrossRefGoogle ScholarPubMed
Lupton, D. (1997). Consumerism, reflexivity and the medical encounter. Social Science and Medicine, 45, 373–381.CrossRefGoogle ScholarPubMed
Maslow, A.H. (1970). Motivation and Personality. Harper and Row: New York.Google Scholar
Milberg, A. & Strang, P. (2004). Exploring comprehensibility and manageability in palliative home care: An interview study of dying cancer patients' informal carers. Psycho-Oncology, 13, 605–618.CrossRefGoogle ScholarPubMed
Mok, E., Chan, F., Chan, V., et al. (2002). Perception of empowerment by family caregivers of patients with a terminal illness in Hong Kong. International Journal of Palliative Nursing, 8, 137–145.Google Scholar
Morse, J.M. (1995). Exploring the theoretical basis of nursing using advanced techniques of concept analysis. Advances in Nursing Science, 17, 31–46.CrossRefGoogle ScholarPubMed
Morse, J.M., Mitcham, C., Hupcey, J.E., et al. (1996). Criteria for concept evaluation. Journal of Advanced Nursing, 24, 385–390.CrossRefGoogle ScholarPubMed
Öhlén, J., Andershed, B., Berg, C., et al. (2007). Relatives in end-of-life care—Part 2: A theory for enabling safety. Journal of Clinical Nursing, 16, 382–390.Google Scholar
Rogers, A., Karlsen, S. & Addington-Hall, J. (2000). “All the services were excellent. It is when the human element comes in that things go wrong”: Dissatisfaction with hospital care in the last year of life. Journal of Advanced Nursing, 31, 768–774.Google Scholar
Rothbaum, F., Weisz, J.R. & Snyder, S.S. (1982). Changing the world and changing the self: A two-process model of perceived control. Journal of Personality and Social Psychology, 42, 5–37.Google Scholar
Seamark, D.A., Blake, S.D., Seamark, C.J., et al. (2004). Living with severe chronic obstructive pulmonary disease (COPD): Perceptions of patients and their carers. Palliative Medicine, 18, 619–625.CrossRefGoogle ScholarPubMed
Shiozaki, M., Morita, T., Hirai, K., et al. (2005). Why are bereaved family members dissatisfied with specialised inpatient palliative care service? A nationwide qualitative study. Palliative Medicine, 19, 319–327.CrossRefGoogle Scholar
Stajduhar, K.I., Martin, W.L., Barwich, D., et al. (2008). Factors influencing family caregivers' ability to cope with providing end-of-life cancer care at home. Cancer Nursing, 31, 77–85.CrossRefGoogle ScholarPubMed
Stewart, D.W. & Kamins, M.A. (1993). Secondary Research: Information, Sources and Methods. Newbury Park, CA: Sage.CrossRefGoogle Scholar
Strang, V.R., Koop, P.M. & Peden, J. (2002). The experience of respite during home-based family caregiving for persons with advanced cancer. Journal of Palliative Care, 18, 97–104.Google Scholar
Thorne, S. (1994). Secondary analysis in qualitative research: Issues and implications. In Critical Research Methods, Morse, J.M. (ed.), pp. 263–279. London, UK: Sage.Google Scholar
Ward-Griffin, C. & McKeever, P. (2000). Relationships between nurses and family caregivers: Partners in care? Advanced Nursing Science, 22, 89–103.Google Scholar
Waterworth, S. & Luker, K.A. (1990). Reluctant collaborators: Do patients want to be involved in decisions concerning care? Journal of Advanced Nursing, 15, 971–976.CrossRefGoogle ScholarPubMed
Wuest, J. (2000). Negotiating with helping systems: An example of grounded theory evolving through emergent fit. Qualitative Health Research, 10, 51.Google Scholar