J Korean Acad Nurs.  2012 Apr;42(2):280-290. 10.4040/jkan.2012.42.2.280.

Experiences of Family Caregivers of Patients with Terminal Cancer

• Choi ES
• Kim KS

• KMID: 1376069
• DOI: http://doi.org/10.4040/jkan.2012.42.2.280

Abstract

PURPOSE
This study done to identify the experiences of families caring for patients with terminal cancer. The question was, "What is the caregiving experience of a family who has a member with terminal cancer?"
METHODS
Grounded Theory was applied and in-depth interviews were done with 11 family members. Interviews were recorded with the interviewees' consent and were transcribed and analyzed. Participants' relationships to patients were 6 spouses, 4 daughters, and 1 mother. The ages of the participants were between 32 and 62, with an average of 47.5.
RESULTS
The study showed "enduring with bonds" as the main category and the main factor affecting this category was the "patients' diagnosis of terminal cancer." The caregiving experience was divided into four stages: shock, confusion, struggle, and acceptance. Mediating factors were relationship with the patient, intimacy with the patient, social support, communication, and trust. Conclusively, participants underwent internal maturity, and changes occurred in family and social and personal life.
CONCLUSION
The families took care of the patients with responsibility and love. The study results should help with the understanding of a family with a member with terminal cancer and should be used to develop nursing, mediating, and consulting programs for these caregivers.

Keyword

Terminally ill; Family caregivers; Caring; Grounded theory

MeSH Terms

Adult
Caregivers/*psychology
Communication
Female
Humans
Interviews as Topic
Male
Middle Aged
Neoplasms/pathology
Social Support
*Terminal Care
Terminally Ill

Figure

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  Figure 1 Model of experiences of family caregivers with terminally ill patients with cancer.

Reference

1. Ahn E.J., Lee Y.S. Burnout and burden of family care-givers for caring of terminal patients with cancer. Journal of Korean Oncology Nursing. 2005. 5:40–51.

2. Brown M.A., Stetz K. The labor of caregiving: A theoretical model of caregiving during potentially fatal illness. Qualitative Health Research. 1999. 9:182–197. http://dx.doi.org/10.1177/104973299129121776.

3. Choi E.S., Kim K.S. Content analysis with counseling cancer patients and their relatives in outpatient hospice office. Korean Journal of Rehabilitation Nursing. 2005. 8:50–58.

4. Dow L.A., Matsuyama R.K., Ramakrishnan V., Kuhn L., Lamont E.B., Lychholm L., et al. Paradoxes in advance care planning: The complex relationship of oncology patients, their physicians, and advance medical directives. Journal of Clinical Oncology. 2010. 28:299–304. http://dx.doi.org/10.1200/JCO.2009.24.6397.

5. Emanuel E.J., Fairclough D.L., Slutsman J., Emanuel L.L. Understanding economic and other burdens of terminal illness: The experience of patients and their caregivers. Annals of Internal Medicine. 2000. 132:451–459.

6. Goldstein N.E., Concato J., Fried T.R., Kasl S.V., Johnson-Jurzeler R., Bradley E.H. Factors associated with caregiver burden among caregivers of ill patients with cancer. Journal of Palliative Care. 2004. 20:38–43.

7. Han K.H., Jung J.G., Oh S.K., Kim J.S., Kim S.S., Kim S.Y. Depression level among family caregivers in terminal cancer patients. Journal of the Korean Academy of Family Medicine. 2005. 26:752–758.

8. Heyland D.K., Dodek P., Rocker G., Groll D., Gafni A., Pichora D., et al. What matters most in end-of-life care: Perceptions of seriously ill patients and their family members. Canadian Medical Association Journal. 2006. 174:627–633. http://dx.doi.org/10.1503/cmaj.050626.

9. Hudson P.L., Aranda S., Kristjanson L.J. Meeting the supportive needs of family caregivers in palliative care: Challenges for health professionals. Journal of Palliative Medicine. 2004. 7:19–25. http://dx.doi.org/10.1089/109662104322737214.

10. Keefe F.J., Ahles T.A., Sutton L., Dalton J., Baucom D., Pope M.S., et al. Partner-guided cancer pain management at the end of life: A preliminary study. Journal of Pain and Symptom Management. 2005. 29:263–272. http://dx.doi.org/10.1016/j.jpainsymman.2004.06.014.

11. Kim B.H., Choi P.S. Life experience on the middle age man spouse of terminal cancer patients. Qualitative Research. 2000. 1:60–73.

12. Korea National Statistical Office. 2007 annual report of cause of deaths. 2007. Daejeon: Author.

13. Kübler-Ross E. On death and dying. 1969. New York, NY: Macmillan.

14. Lee S.W., Lee E.O., Heo D.S., Noh K.H., Kim H.S., Kim S.R., et al. The study on the medical and nursing service needs of the terminal cancer patients and their caregivers. Journal of Korean Academy of Nursing. 1998. 28:958–969.

15. Lee W.H. Total pain of patient with terminal cancer. Korean Journal of Hospice and Palliative Care. 2000. 3:60–74.

16. Lobb E.A., Clayton J.M., Price M.A. Suffering, loss and grief in palliative care. Australian Family Physician. 2006. 35:772–775.

17. Loke S.S., Rau K.M., Huang C.F. Impact of combined hospice care on terminal cancer patients. Journal of Palliative Medicine. 2011. 14:683–687. http://dx.doi.org/10.1089/jpm.2010.0331.

18. Mok E., Chan F., Chan V., Yeung E. Family experience caring for terminally patients with cancer in Hong Kong. Cancer Nursing. 2003. 26:267–275.

19. Mossin H., Landmark B.T. Being present in hospital when the patient is dying-a grounded theory study of spouses experiences. European Journal of Oncology Nursing. 2011. 15:382–389. http://dx.doi.org/10.1016/j.ejon.2010.11.005.

20. Murray S.A., Kendall M., Boyd K., Grant L., Highet G., Sheikh A. Archetypal trajectories of social, psychological, and spiritual wellbeing and distress in family care givers of patients with lung cancer: Secondary analysis of serial qualitative interviews. British Medical Journal. 2010. 340:c2581. http://dx.doi.org/10.1136/bmj.c2581.

21. National Cancer Center. Korean hospice palliative care standards and regulations. 2003. Koyang: Author.

22. Payne S. Oliviere D., Monroe B., Payne S, editors. Carers and caregivers. Death, dying, and social differences. 2004. London: Oxford University Press;181–198.

23. Steinhauser K.E., Christakis N.A., Clipp E.C., McNeilly M., McIntyre L., Tulsky J.A. Factors considered important at the end of life by patients, family, physicians, and other care providers. Journal of American Medical Association. 2000. 284:2476–2482. http://dx.doi.org/10.1001/jama.284.19.2476.

24. Strauss A., Corbin J. Basics of qualitative research. grounded theory and techniques. 1998. Newbury Park, CA: Sage.

25. Woo S.K. Burden and social support of family caregivers in caring of terminal cancer patients. 2004. Nonsan: University of Konyang;Unpublished master's thesis.