Hostname: page-component-78c5997874-fbnjt Total loading time: 0 Render date: 2024-11-20T00:08:56.511Z Has data issue: false hasContentIssue false
  • English
  • Français

Acting with dedication and expertise: Relatives' experience of nurses' provision of care in a palliative unit

Published online by Cambridge University Press:  04 November 2013

Å. Grøthe ,
Stian Biong  and
E.K. Grov
Å. Grøthe
Affiliation:
Haraldsplass Deaconess University College, Bergen, Norway; Sunniva Center for Palliative Care, Haukeland University Hospital, Bergen, Norway
Stian Biong*
Affiliation:
Buskerud University College, Faculty of Health Sciences, Drammen, Norway
E.K. Grov
Affiliation:
University of Oslo, Faculty of Medicine, Department of Nursing Science, Oslo, Norway; Sogn og Fjordane University College, Department of Health, Førde, Norway
*
Address correspondence and reprint requests to: Stian Biong, BuskerudUniversity College, Drammen, Norway. E-mail: [email protected]
Get access Rights & Permissions [Opens in a new window]

Abstract

Objectives:

Admission of a cancer patient to a palliative unit when near the final stage of their disease trajectory undoubtedly impacts their relatives. The aim of our study was to illuminate and interpret relatives' lived experiences of health personnel's provision of care in a palliative ward.

Methods:

A phenomenological/hermeneutic approach was employed that was inspired by the philosophical tradition of Heidegger and Ricoeur and further developed by Lindseth and Nordberg. The perspectives of the narrator and the text were interpreted by highlighting relatives' views on a situation in which they have to face existential challenges. The analysis was undertaken in three steps: naïve reading, structural analysis, and comprehensive understanding, including the authors' professional experiences and theoretical background.

Results:

Six subthemes appeared: the dying person, the bubble, the sight, the cover, the provision for children's needs, and the availability of immediate help. These components were further constructed into three themes: the meaning of relating, the meaning of action, and the meaning of resources. Our comprehensive understanding of the results suggests that the most important theme is “acting with dedication and expertise.”

Significance of results:

The following aspects are crucial for relatives of cancer patients hospitalized in a palliative ward: time and existence, family dynamics, and care adjusted to the situation. Our study results led to reflections on the impact of how nurses behave when providing care to patients during the palliative phase, and how they interact with relatives in this situation. We found that cancer patients in a palliative unit most appreciate nurses who act with dedication and expertise.

Keywords

Palliative careRelativesLived experienceCancerPalliative ward
Type
Original Articles
Information
Palliative & Supportive Care , Volume 13 , Issue 6 , December 2015 , pp. 1547 - 1558
Copyright
Copyright © Cambridge University Press 2013 

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

Alma, H.H. & Smaling, A. (2006). The meaning of empathy and imagination in health care and health studies. International Journal of Qualitative Studies on Health and Well-Being, 1(4), 195–211.CrossRefGoogle 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(9), 1158–1169.CrossRefGoogle ScholarPubMed
Antonovsky, A. (1987). Unraveling the mystery of health. San Francisco: Jossey-Bass.Google Scholar
Ashbury, F.D., Findlay, H., Reynolds, B., et al. (1998). A Canadian survey of cancer patients experiences: Are their needs being met? Cancer Prevention Control, 2(3), 129–132.Google Scholar
Ashworth, P.D. (2006). Seeing oneself as a carer in the activity of caring: Attending to the lifeworld of a person with Alzheimer's disease. International Journal of Qualitative Studies on Health and Well-Being, 1(4), 212–225.CrossRefGoogle Scholar
Benner, P. (1984). From novice to expert. San Francisco: Addison-Wesley Publishing Company.Google Scholar
Brobäck, G. & Berterö, C. (2003). How next of kin experience palliative care of relatives at home. European Journal of Cancer Care, 12(4), 339–346.Google Scholar
Bruera, E.R., Dev, L., Emanuel, E.J., et al. (2009). Overview of symptom control in the terminally ill cancer patient. www.utdol.com/online/content/topic.do?topicKey=endolif/5152&view=print. (Accessed on September 16, 2012).Google Scholar
Daly, B.J., Douglas, S., Lipson, A., et al. (2009). Needs of older caregivers of patients with advanced cancer. Journal of the American Geriatric Society, 57(Suppl. 2), 293–295.Google Scholar
Denzin, N.K. & Lincoln, Y.S. (2003). Collecting and interpreting qualitative materials. Thousand Oaks, CA: Sage.Google Scholar
Ellershaw, J. & Wilkinson, S. (2003). Care of the dying: A pathway to excellence. Oxford: Oxford University Press.CrossRefGoogle Scholar
European Association for Palliative Care (EAPC) (2005). Definition of palliative care. http://www.eapcnet.org/about/definition.html.Google Scholar
Fitch, M. (2005). Needs of patients living with advanced disease. Canadian Oncology Nursing Journal, 4(15), 230–242.Google Scholar
Fitch, M. & Allard, M. (2007). Perspectives of husbands of women with breast cancer: Information needs. Canadian Oncology Nursing Journal, 17(2), 79–90.Google Scholar
Gagnon, P., Charbonneau, C., Allard, P., et al. (2002). Delirium in advanced cancer: A psychoeducational intervention for family caregivers. Journal of Palliative Care, 18(4), 253–261.CrossRefGoogle Scholar
Gelfman, L.P., Meier, D.E. & Morrison, R.S. (2008). Does palliative care improve quality? A survey of bereaved family members. Journal of Pain and Symptom Management, 36(1), 22–28.CrossRefGoogle ScholarPubMed
Given, B.A., Sherwood, P. & Given, C. (2011). Support for caregivers of cancer patients: Transition after active treatment. Cancer Epidemiology, Biomarkers & Prevention, 20, 2015–2021.Google Scholar
Grov, E.K., Dahl, A.A., Moum, T., et al. (2005). Anxiety, depression, and quality of life in caregivers of patients with cancer in late palliative phase. Annals of Oncology, 16(7), 1185–1191.Google Scholar
Grov, E.K., Fosså, S.D., Tønnessen, A., et al. (2006 a). The Caregiver Reaction Assessment: Psychometrics and temporal stability in primary caregivers of Norwegian cancer patients in late palliative phase. Psycho-Oncology, 15, 517–527.Google Scholar
Grov, E.K., Fosså, S.D., Sørebø, Ø., et al. (2006 b). Primary caregivers of cancer patients in the palliative phase: A path analysis of variables influencing their burden. Social Science of Medicine, 63(9), 2429–2439.Google Scholar
Gulbrandsen, P. (2008). God kommunikasjon — også for legenes skyld! [Good communication — necessary for the medical doctor as well as the patient!] [In Norwegian]. Tidsskrift for den norske legeforening, 24, 2840–2842.Google Scholar
Heidegger, M. (1992). Existence and being. Göteborg, Sweden: Daidalos.Google Scholar
Hewitt, M., Greenfield, S. & Stovall, E. (Committee on Cancer Survivorship: Improving Care and Quality of Life Institute of Medicine and National Research Council) (2008). From cancer patient to cancer survivor: Lost in transition. Washington, DC: The National Academies Press.Google 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(5), 627–633.CrossRefGoogle ScholarPubMed
Hodge, F.S., Itty, T.L., Cadogan, M.P., et al. (2012). “Weaving balance into life”: Development and cultural adaptation of a cancer symptom management toolkit for Southwest American Indians. Journal of Cancer Survivorship, 6(2), 182–188.CrossRefGoogle ScholarPubMed
Hodges, L.J., Humphris, G.M. & MacFarlane, G. (2005). A meta-analytic investigation of the relationship between the psychological distress of cancer patients and their carers. Social Science and Medicine, 60(1), 1–12.Google Scholar
Karlberg, I., Hallberg, L. R.-M. & Sarvimäki, A. (2002). Introduction and aims of the book Health, public health and research on public health. In Qualitative methods in public health research: Theoretical foundations and practical examples. Hallberg, L.R.-M. (ed.), pp. 13–38. Lund: Studentlitteratur.Google Scholar
Keegan, O., McGee, H., Hogan, M., et al. (2001). Relatives' views of health care in the last year of life. International Journal of Palliative Nursing, 7(9),449–456.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(2), 76–83.Google Scholar
Kuijer, R.G., Buunk, B.P., Ybema, J.F., et al. (2002). The relation between perceived inequity, marital satisfaction and emotions among couples facing cancer. British Journal of Social Psychology, 41(Pt. 1), 39–56.Google Scholar
Kvåle, K. (1999). Pasienten vil ha teknisk dyktighet — sykepleierne vil lytte [The patient wants technical skilled nurses — the nurses emphasize listening] [In Norwegian]. Sykepleien, 10. 60–64.Google Scholar
Kvåle, K. (2006). Den omsorgsfulle sykepleier slik pasienten ser det [The caring nurse — the patient's perspective] [In Norwegian]. Vård i Norden, 79, 15–19.Google Scholar
Kvåle, S. & Brinkmann, S. (2009). Interviews: Learning the craft of qualitative research interviewing. Los Angeles: Sage.Google Scholar
Lecouturier, J., Jacoby, A., Bradshaw, C., et al. (1999). Lay carers' satisfaction with community palliative care: Results of a postal survey (South Tyneside MAAG Palliative Care Study Group). Palliative Medicine, 13(4), 275–283.CrossRefGoogle ScholarPubMed
Linderholm, M. & Friedrichsen, M., (2010). A desire to be seen: Family caregivers' experiences of their caring role in palliative home care. Cancer Nursing, 33(1), 28–36.Google Scholar
Lindseth, A. & Norberg, A. (2004). A phenomenological hermeneutical method for researching lived experience. Scandinavian Journal of Caring Sciences, 18(2), 145–153.CrossRefGoogle ScholarPubMed
McCormack, B. & McCance, T. (2010). Person-centred Nursing: Theory and practice. Chichester: Wiley-Blackwell.Google Scholar
Miceli, P.J. & Mylod, D.E. (2003). Satisfaction of families using end-of-life care: Current successes and challenges in the hospice industry. American Journal of Hospice and Palliative Care, 20(5), 360–370.Google Scholar
Miederma, B. & Easley, J. (2012). Barriers to rehabilitative care for young breast cancer survivors: A qualitative understanding. Supportive Care in Cancer, 20(6), 1193–1201.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(9), 605–618.Google Scholar
Mishler, E.G. (1986). Research interviewing: Context and narrative. Cambridge: Harvard University Press.Google Scholar
Nordøy, T., Thorsen, L., Kvikstad, A., et al. (2006). Ernæring og væskebehandling til pasienter med ikke —kurabel kreftsykdom (Nutrition and hydration for patients with non-curable cancer). Tidsskrift for Norsk Lægeforening, 5(126), 624–627.Google Scholar
Northouse, L., Williams, A.L., Given, B., et al. (2012). Psychosocial care for family caregivers of patients with cancer. Journal of Clinical Oncology, 30(11), 1227–1234.Google Scholar
Norwegian Directorate of Health (2012). Nasjonalt handlingsprogram med retningslinjer for palliasjon i kreftomsorgen (National action programme with guidelines for palliative care for patients with cancer). Oslo: Sosial- og helsedirektoratet.Google Scholar
Onishi, H., Onose, M., Okuno, S., et al. (2005). Spouse caregivers of terminally ill cancer patients as cancer patients: A pilot study in a palliative care unit. Palliative and Supportive Care, 3(2), 83–86.Google Scholar
Ostlund, U., Wennmann-Larsen, A., Persson, C., et al. (2010). Mental health in significant others of patients dying from lung cancer. Psycho-Oncology, 19(1), 29–37.Google Scholar
Polkinghorne, D.E. (1988). Narrative knowing and the human sciences. Albany: State University of New York Press.Google Scholar
Quest, T.E. & Bone, P. (2009). Caring for patients with malignancy in the emergency department: Patient–provider interactions. Emergency Medicine Clinics of North America, 27(2), 333–339.Google Scholar
Ricoeur, P. (1976). Interpretation theory: Discourse and the surplus of meaning. Fort Worth: Texas Christian University Press.Google Scholar
Riessman, C.K. (1993). Narrative analysis. London: Sage Publications.Google Scholar
Rollison, B. & Carlsson, M. (2002). Evaluation of advanced home care (AHC): The next-of-kin's experiences. European Journal of Oncology Nursing, 6(2), 100–106.CrossRefGoogle ScholarPubMed
Sarvimäki, A. (2006). Well-being as being well: A Heideggerian look at well-being. International Journal of Qualitative Studies on Health and Well-Being, 1(1), 4–10.Google Scholar
Saunders, C. & Platt, M. (1999). Pain and impending death. In Textbook of pain, 4th ed. Wall, P.D. & Melzack, R. (eds.), pp. 1113–1122. London: Churchill Livingstone.Google Scholar
Schjoedt, B., Haugen, F.D., Straume, M., et al. (2008). Familien [The family]. In Palliasjon: Nordisk lærebok [Palliation: Nordic handbook]. Kaasa, S. (ed.), pp. 89–114. Oslo: Gyldendal Norsk Forlag.Google Scholar
Statistics Norway (2012). Dødsårsaker 2011. http://www.ssb.no/emner/03/01/10/dodsarsak/ and https://www.ssb.no/statistikkbanken/selectvarval/saveselections.asp. (Accessed on February 25, 2013).Google Scholar
Steele, L.L., Mills, B., Long, M.R., et al. (2002). Patient and caregiver satisfaction with end-of-life care: Does high satisfaction mean high quality of care? American Journal of Hospice and Palliative Care, 19(1), 19–27.Google Scholar
Steinhauser, K.E., Clipp, E.C., McNeilly, M., et al. (2000 a). In search of a good death: Observations of patients, families, and providers. Annals of Internal Medicine, 132(10), 825–832.CrossRefGoogle ScholarPubMed
Steinhauser, K.E., Christakis, N.A., Clipp, E.C., et al. (2000 b). Factors considered important at the end of life by patients, family, physicians, and other care providers. The Journal of the American Medical Association, 284(19), 2476–2482.Google Scholar
Stern, D.N. (2004). The present moment in psychotherapy and everyday life. New York: W.W. Norton & Company.Google Scholar
Van Ryn, M., Sanders, S., Kahn, K., et al. (2011). Objective burden, resources, and other stressors among informal cancer caregivers: A hidden quality issue? Psycho-Oncology, 20(1), 44–52.Google Scholar
Yennurajalingam, S., Dev, R., Lockey, M., et al. (2008). Characteristics of family conferences in a palliative care unit at a comprehensive cancer center. Journal of Palliative Medicine, 11, 1208–1211.Google Scholar