DOI QR코드

DOI QR Code

Experiences of Family Caregivers of Patients with Terminal Cancer

말기 암환자 가족의 돌봄 경험

  • Choi, Eun-Sook (Center for Lung Cancer, National Cancer Center) ;
  • Kim, Keum-Soon (Seoul National University, College of Nursing, Research Institute of Nursing Science)
  • Received : 2011.08.08
  • Accepted : 2012.04.26
  • Published : 2012.04.30

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.

Keywords

References

  1. Ahn, E. J., & Lee, Y. S. (2005). Burnout and burden of family care-givers for caring of terminal patients with cancer. Journal of Korean Oncology Nursing, 5, 40-51.
  2. Brown, M. A., & Stetz, K. (1999). The labor of caregiving: A theoretical model of caregiving during potentially fatal illness. Qualitative Health Research, 9, 182-197. http://dx.doi.org/10.1177/104973299129121776
  3. Choi, E. S., & Kim, K. S. (2005). Content analysis with counseling cancer patients and their relatives in outpatient hospice office. Korean Journal of Rehabilitation Nursing, 8, 50-58.
  4. Dow. L. A., Matsuyama, R. K., Ramakrishnan, V., Kuhn, L., Lamont, E. B., Lychholm, L., et al. (2010). Paradoxes in advance care planning: The complex relationship of oncology patients, their physicians, and advance medical directives. Journal of Clinical Oncology, 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. (2000). Understanding economic and other burdens of terminal illness: The experience of patients and their caregivers. Annals of Internal Medicine, 132, 451-459.
  6. Goldstein, N. E., Concato, J., Fried, T. R., Kasl, S. V., Johnson-Jurzeler, R., & Bradley, E. H. (2004). Factors associated with caregiver burden among caregivers of ill patients with cancer. Journal of Palliative Care, 20, 38-43.
  7. Han, K. H., Jung, J. G., Oh, S. K., Kim, J. S., Kim, S. S., & Kim, S. Y. (2005). Depression level among family caregivers in terminal cancer patients. Journal of the Korean Academy of Family Medicine, 26, 752-758.
  8. Heyland, D. K., Dodek, P., Rocker, G., Groll, D., Gafni, A., Pichora, D., 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, 627-633. http://dx.doi.org/10.1503/cmaj.050626
  9. Hudson, P. L., Aranda, S., & Kristjanson, L. J. (2004). Meeting the supportive needs of family caregivers in palliative care: Challenges for health professionals. Journal of Palliative Medicine, 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. (2005). Partner-guided cancer pain management at the end of life: A preliminary study. Journal of Pain and Symptom Management, 29, 263-272. http://dx.doi.org/10.1016/j.jpainsymman.2004.06.014
  11. Kim, B. H., & Choi, P. S. (2000). Life experience on the middle age man spouse of terminal cancer patients. Qualitative Research, 1, 60-73.
  12. Korea National Statistical Office. (2007). 2007 annual report of cause of deaths. Daejeon: Author.
  13. Kübler-Ross, E. (1969). On death and dying. New York, NY: Macmillan. Lee, S. W., Lee, E. O., Heo, D. S., Noh, K. H., Kim, H. S., Kim, S. R., et al. (1998). The study on the medical and nursing service needs of the terminal cancer patients and their caregivers. Journal of Korean Academy of Nursing, 28, 958-969. https://doi.org/10.4040/jkan.1998.28.4.958
  14. Lee, W. H. (2000). Total pain of patient with terminal cancer. The Korean Journal of Hospice and Palliative Care, 3, 60-74.
  15. Lobb, E. A., Clayton, J. M., & Price, M. A. (2006). Suffering, loss and grief in palliative care. Australian Family Physician, 35, 772-775.
  16. Loke, S. S., Rau, K. M., & Huang, C. F. (2011). Impact of combined hospice care on terminal cancer patients. Journal of Palliative Medicine, 14, 683-687. http://dx.doi.org/10.1089/jpm.2010.0331
  17. Mok, E., Chan, F., Chan, V., & Yeung, E. (2003). Family experience caring for terminally patients with cancer in Hong Kong. Cancer Nursing, 26, 267-275. https://doi.org/10.1097/00002820-200308000-00003
  18. Mossin, H., & Landmark, B. T. (2011). Being present in hospital when the patient is dying-a grounded theory study of spouses experiences. European Journal of Oncology Nursing, 15, 382-389. http://dx.doi. org/10.1016/j.ejon.2010.11.005
  19. Murray, S. A., Kendall, M., Boyd, K., Grant, L., Highet, G., & Sheikh, A. (2010). 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, 304, c2581. http://dx.doi.org/10.1136/bmj.c2581
  20. National Cancer Center. (2003). Korean hospice palliative care standards and regulations. Koyang: Author.
  21. Payne, S. (2004). Carers and caregivers. In D. Oliviere & B. Monroe & S. Payne (Eds.), Death, dying, and social differences (pp. 181-198). London: Oxford University Press.
  22. Steinhauser, K. E., Christakis, N. A., Clipp, E. C., McNeilly, M., McIntyre, L., & Tulsky, J. A. (2000). Factors considered important at the end of life by patients, family, physicians, and other care providers. Journal of American Medical Association, 284, 2476-2482. http://dx.doi. org/10.1001/jama.284.19.2476
  23. Strauss, A., & Corbin, J. (1998). Basics of qualitative research. grounded theory and techniques. Newbury Park, CA: Sage.
  24. Woo, S. K. (2004). Burden and social support of family caregivers in caring of terminal cancer patients. Unpublished master's thesis, University of Konyang, Nonsan.

Cited by

  1. 임상적 의사결정과 생명의료윤리에 대한 환자, 가족, 간호사와 의사의 인지도 vol.14, pp.1, 2014, https://doi.org/10.5388/aon.2014.14.1.23
  2. 호스피스환자 가족을 위한 지지적 교육프로그램의 효과 vol.20, pp.2, 2012, https://doi.org/10.5977/jkasne.2014.20.2.175
  3. 호스피스 환자 가족돌봄제공자의 건강상태 영향 요인 vol.17, pp.2, 2012, https://doi.org/10.14475/kjhpc.2014.17.2.75
  4. 호스피스 환자의 증상조절에 따른 가족간병인의 삶의 질과 우울, 불안 vol.18, pp.4, 2015, https://doi.org/10.14475/kjhpc.2015.18.4.314
  5. 혈액암환자 배우자의 돌봄 경험: 끝이 없는 터널에서 나오는 길 찾기 vol.16, pp.1, 2016, https://doi.org/10.5388/aon.2016.16.1.46
  6. 암환자 가족의 고통체험 - Parse의 인간되어감 연구방법 - vol.19, pp.2, 2012, https://doi.org/10.14475/kjhpc.2016.19.2.127
  7. Unmet Needs and Caregiver Burden Among Family Caregivers of Hospice Patients in South Korea vol.19, pp.4, 2012, https://doi.org/10.1097/njh.0000000000000350
  8. 입원한 암 환자 가족 돌봄제공자의 디스트레스 경험 vol.29, pp.5, 2012, https://doi.org/10.7475/kjan.2017.29.5.451
  9. Validation of the Nurses' Involvement in Dying Patients and Family Care-Korean Version vol.23, pp.4, 2012, https://doi.org/10.14475/kjhpc.2020.23.4.228