Hostname: page-component-78c5997874-t5tsf Total loading time: 0 Render date: 2024-11-10T16:39:07.821Z Has data issue: false hasContentIssue false
  • English
  • Français

The experience of being next of kin to an older person in the last phase of life

Published online by Cambridge University Press:  18 February 2010

Magdalena Andersson ,
Anna K. Ekwall ,
Ingalill R. Hallberg  and
Anna-Karin Edberg
Magdalena Andersson*
Affiliation:
Department of Health Sciences and the Vårdal Institute, Lund, Sweden
Anna K. Ekwall
Affiliation:
Department of Health Sciences and the Vårdal Institute, Lund, Sweden
Ingalill R. Hallberg
Affiliation:
Department of Health Sciences and the Vårdal Institute, Lund, Sweden
Anna-Karin Edberg
Affiliation:
Department of Health Sciences and the Vårdal Institute, Lund, Sweden
*
Address correspondence and reprint requests to: Magdalena Andersson, Eslövs kommun, SE-241 80 Eslöv, Sweden. E-mail: magdalena.andersson@eslov.se
Get access Rights & Permissions [Opens in a new window]

Abstract

Objective:

The aim of the study was to investigate the experience of being next of kin to an older person in the last phase of life as narrated after the older person's death.

Method:

Qualitative interviews were performed with the next of kin (n = 17) to people aged 75 years and older who had recently died and had received help and/or care from the municipality in the last phase of life. Eleven women and six men participated, of whom seven were spouses, nine were children, and one was a grandchild. The interviews were analysed using qualitative content analysis.

Results:

The experience of the next of kin could be understood as being a devoted companion during the transition toward the inevitable end, embracing the categories of living in the shadow of death; focusing on the needs of the dying person, making adjustments to everyday life; feeling the major responsibility; struggling with the health and social care system; and gaining strength from support.

Significance of results:

Being next of kin to an old person at the end of life means being a devoted companion during the transition toward the inevitable end, including the feeling of bearing the major responsibility and the need to be acknowledged by professionals. This study points to the importance of having access to professional care when it is needed, to complement and support the next of kin when his or her own resources and strength falter. This also includes support to enable the next of kin to remain involved in the care of his or her loved ones, thereby fulfilling their own wishes.

Keywords

RelativesFrail elderlyPalliative careQualitative research
Type
Original Articles
Information
Palliative & Supportive Care , Volume 8 , Issue 1 , March 2010 , pp. 17 - 26
Copyright
Copyright © Cambridge University Press 2010

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

Aldred, H., Gott, M., & Gariballa, S. (2005). Advanced heart failure: Impact on older patients and informal caregivers. Journal of Advanced Nursing, 49, 116–124.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, 1158–1169.CrossRefGoogle ScholarPubMed
Andersson, M., Hallberg, I.R., & Edberg, A.-K. (2006). The final period of life in elderly people in Sweden: Factors associated with QoL. International Journal of Palliative Nursing, 12, 286–293 + errata, 12, 496.CrossRefGoogle ScholarPubMed
Andersson, M., Hallberg, I.R., & Edberg, A.-K. (2007). Health care consumption and place of death among old people with public home care or in special accommodation in their last year of life. Aging Clinical and Experimental Research, 19, 228–239.CrossRefGoogle ScholarPubMed
Andersson, M., Hallberg, I.R., & Edberg, A.-K. (2008). Old people receiving municipal care, the experience of what constitutes a good life in the last phase of life. International Journal of Nursing Studies, 45, 818–828.CrossRefGoogle ScholarPubMed
Baxter, L.A. (1994). Content analysis. In Studying Interpersonal Interaction, Montgomery, B.M. & Duck, S. (eds.), pp. 239–254. London: The Guilford Press.Google Scholar
Berg, B.L. (2004). Qualitative Research Methods for Social Sciences (5th ed.). Boston: Allyn and Bacon.Google Scholar
Brazil, K., Bédard, M., Willison, K., et al. (2003). Caregiving and its impact on families of the terminally ill. Aging & Mental Health, 7, 376–382.CrossRefGoogle ScholarPubMed
Ekwall, A. & Hallberg, I.R. (2007). The association between caregiving satisfaction, difficulties and coping among older family caregivers. Journal of Clinical Nursing, 16, 832–844.CrossRefGoogle ScholarPubMed
Ekwall, A., Sivberg, B., & Hallberg, I.R. (2004). Dimensions of informal care and quality of life among elderly family caregivers. Scandinavian Journal of Caring Science, 18, 239–248.CrossRefGoogle ScholarPubMed
Grande, G.E., Farquhar, M.C., Barclay, S.I.G., et al. (2004). Valued aspects of primary palliative care: Content analysis of bereaved carers' descriptions. British Journal of General Practice, 54, 772–778.Google ScholarPubMed
Graneheim, U.H. & Lundman, B. (2004). Qualitative content analysis in nursing research: Concepts, procedures and measures to achieve trustworthiness. Nurse Education Today, 24, 105–112.CrossRefGoogle ScholarPubMed
Grbich, C., Parker, D., & Maddocks, I. (2001). The emotions and coping strategies of caregivers of family members with terminal cancer. Journal of Palliative Care, 17, 30–36.CrossRefGoogle ScholarPubMed
Guba, E.G. (1981). Criteria for assessing the trustworthiness of naturalistic inquiries. ERIC/ECTJ Annual Review Paper, 29, 75–91.Google Scholar
Hellström, Y. & Hallberg, I.R. (2001). Perspectives of elderly people receiving home help on health, care and quality of life. Health and Social Care in the Community, 9, 61–71.CrossRefGoogle ScholarPubMed
Janlöv, A.-C., Hallberg, I.R., & Petersson, K. (2006). Family members' experience of participation in the needs assessment when their older next of kin becomes in need of public home help: An interview study. International Journal of Nursing Studies, 43, 1033–1046.CrossRefGoogle ScholarPubMed
Jo, S., Brazil, K., Lohfeld, L., et al. (2007). Caregiving at the end of life: Perspectives from spousal caregivers and care recipients. Palliative and Supportive Care, 5, 11–17.CrossRefGoogle ScholarPubMed
Kralik, D., Visentin, K., & von Loon, A. (2006). Transition: A literature review. Journal of Advanced Nursing, 55, 320–329.CrossRefGoogle ScholarPubMed
Lincoln, Y.S. & Guba, E.G. (1985). Naturalistic Inquiry. Beverly Hills, CA: Sage.CrossRefGoogle Scholar
Mearns, S.J. (2000). The impact of loss on adolescents: Developing appropriate support. International Journal of Palliative Nursing, 6, 12–17.CrossRefGoogle ScholarPubMed
Medical Research Council. (2000). Riktlinjer för Etisk Värdering av Medicinsk Humanforskning [Guidelines for Ethical Evaluation of Medical Research Involving Human Subjects]. MFR-report 2. Stockholm: Medical Research Council.Google Scholar
Meleis, A.I., Sawyer, L.M., Im, E.O., et al. (2000). Experiencing transitions: An emerging middle-range theory. Advanced Nursing Science, 23, 12–28.CrossRefGoogle ScholarPubMed
Milberg, A., Rydstrand, K., Helander, L., et al. (2005). Participants' experiences of a support group intervention for family members during ongoing palliative home care. Journal of Palliative Care, 21, 277–284.CrossRefGoogle ScholarPubMed
Mishler, E.G. (1986). Research interviewing: Context and Narrative. London: Harvard University Press.CrossRefGoogle Scholar
National Board of Health and Welfare. (2005). Vård och Omsorg om Äldre—Lägesrapport 2005 [Care of the elderly]. Stockholm: Socialstyrelsen.Google Scholar
Nijboer, C.N., Temelaar, R., Sanderman, R., et al. (1998). Cancer and caregiving: The impact on the caregiver's health. Phyco-Oncology, 7, 3–13.Google ScholarPubMed
Polit, D.F. & Hungler, B.P. (1999). Nursing Research. Principles and Methods (6th ed.). Philadelphia: Lippincott Williams & Wilkins.Google Scholar
Sandberg, J., Lundh, U., & Nolan, M.R. (2001). Placing a spouse in a care home: The importance of keeping. Journal of Clinical Nursing, 10, 406–416.CrossRefGoogle Scholar
Schumacher, K.L., Jones, O.S., & Meleis, A.I. (1999). Helping elderly persons in transition: A framework for research and practice. In Life transitions in the Older Adult: Issues for Nurses and Other Health Professionals, Swanson, E.A. & Tripp-Reimer, T. (eds.). pp. 1–26. New York: Springer Publishing Company Inc.Google Scholar
Schumacher, K.L. & Meleis, A.I. (1994). Transition: A central concept in nursing. Image, 26, 119–127Google ScholarPubMed
Sindings, C. (2003). “Because you know there's an end to it”: Caring for a relative or friend with advanced breast cancer. Palliative and Supportive Care, 1, 153–163.CrossRefGoogle Scholar
Steinhauser, K.E., Clipp, E.C., McNeilly, M., et al. (2000). In search of a good death: Observations of patients, families, and providers. Annals of Internal Medicine, 132, 825–832.CrossRefGoogle ScholarPubMed
Stoltz, P., Udén, G., & Willman, A. (2004). Support for family carers who care for an elderly person at home: A systematic literature review. Scandinavian Journal of Caring Sciences, 18, 111–119.CrossRefGoogle ScholarPubMed
Visser, G., Klinkenberg, M., Broese Van Groenou, M.I., et al. (2004). The end of life: Informal care for dying older people and its relationship to place of death. Palliative Medicine, 18, 468–477.CrossRefGoogle ScholarPubMed
Waldrop, D.P., Kramer, B.J., Skretny, J.A., et al. (2005). Final transitions: Final caregiving at the end of life. Journal of Palliative Medicine, 8, 623–638.CrossRefGoogle ScholarPubMed