1Head Nurse, Center for Lung Cancer, National Cancer Center, Goyang, Korea.
2Professor, Seoul National University, College of Nursing, Research Institute of Nursing Science, Seoul, Korea.
Address reprint requests to: Choi, Eun Sook. National Cancer Center, 323 Ilsan-ro, Ilsandong-gu, Goyang-si Gyeonggi-do, 410-769, Republic of Korea. Tel: (office) +82-31-920-0051, (cellular phone) 010-6688-4887, Fax: +82-31-920-0059, eunsookc77@ncc.re.kr
• Received: August 8, 2011 • Accepted: April 26, 2012
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.
This article is a condensed form of the first author's doctoral thesis from Seoul National University.
REFERENCES
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.
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.ArticlePubMed
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.ArticlePubMed
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.PubMed
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.ArticlePubMedPMC
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.ArticlePubMed
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.ArticlePubMed
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.ArticlePDF
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.PubMed
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.ArticlePubMed
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.ArticlePubMed
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.ArticlePubMedPMC
21. National Cancer Center. Korean hospice palliative care standards and regulations. 2003;Koyang, Author.
22. Payne S. Oliviere D., Monroe B., Payne S. Carers and caregivers. In: 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.Article
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.
Figure 1
Model of experiences of family caregivers with terminally ill patients with cancer.
Figure & Data
REFERENCES
Citations
Citations to this article as recorded by
Challenges and Proposed Improvements in Advance Care Planning: Insights from a Real Clinical Case of a Terminally Ill Patient in Korea Hongyeul Lee Korean Journal of Medical Ethics.2025; 28(1): 41. CrossRef
Do spouse burden of care, family resilience, and coping affect family function in gynecologic cancer in Korea?: a cross-sectional study Minkyung Kim, Sukhee Ahn Korean Journal of Women Health Nursing.2022; 28(3): 197. CrossRef
Caregiving experiences of Korean family caregivers of cancer patients: An integrative literature review Eunice E. Lee, Shin‐Young Lee Psycho-Oncology.2020; 29(10): 1486. CrossRef
Validation of the Nurses’ Involvement in Dying Patients and Family Care-Korean Version Mi Yeon Kim, Hanna Lee, Inyoung Lee, Mirim Lee, Haeryun Cho The Korean Journal of Hospice and Palliative Care.2020; 23(4): 228. CrossRef
A Concept Analysis of Posttraumatic Growth in Family Caregivers of Cancer Patients Kyoung Hee Kim, Yong Soon Shin Asian Oncology Nursing.2019; 19(1): 9. CrossRef
Experiences of Distress among Family Caregivers of Hospitalized Cancer Patients Juhye Jin, Jin-Hee Yoo Korean Journal of Adult Nursing.2017; 29(5): 451. CrossRef
Unmet Needs and Caregiver Burden Among Family Caregivers of Hospice Patients in South Korea Jihyeon Lee, Chiyoung Cha Journal of Hospice & Palliative Nursing.2017; 19(4): 323. CrossRef
The Lived Experience of Suffering of Family with Cancer Patients: Parse’s Human Becoming Research Method Ye-Sook Choi The Korean Journal of Hospice and Palliative Care.2016; 19(2): 127. CrossRef
Experiences of Spouses of Patients with Hematologic Malignancies: Finding a Way to Get Out of the Endless Tunnel Youngshin Lee, Youngran Tak Asian Oncology Nursing.2016; 16(1): 46. CrossRef
Family Caregivers’ Quality of Life, Depression and Anxiety according to Symptom Control in Hospice Patients Yun Hee Kim, Seung Hun Lee, Ho Seop Lim, Young Jin Choi, Yun Jin Kim, Sang Yeoup Lee, Jeong Gyu Lee, Dong Wook Jeong, Kyoung Hwa Yu The Korean Journal of Hospice and Palliative Care.2015; 18(4): 314. CrossRef
Impact Factors for Health of Family Caregivers of Hospice Patients Bok Yae Chung, Hyeon Sook Park The Korean Journal of Hospice and Palliative Care.2014; 17(2): 75. CrossRef
Effect of Supportive Education Program for Hospice Patients's Family Tae Yeon Lee, Yunhee Kwon The Journal of Korean Academic Society of Nursing Education.2014; 20(2): 175. CrossRef
Recognition of Patients, Families, Nurses, and Physicians about Clinical Decision-making and Biomedical Ethics Ae Ran Park, Hyang Sook So, Myeong Cheong Chae Asian Oncology Nursing.2014; 14(1): 23. CrossRef