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Family caregiver's experiences in caring for a patient with terminal cancer at home in Japan

Published online by Cambridge University Press:  25 October 2007

Tomomi Sano ,
Etsuko Maeyama ,
Masako Kawa ,
Yuki Shirai ,
Mitsunori Miyashita ,
Keiko Kazuma  and
Takeshi Okabe
Tomomi Sano*
Affiliation:
Department of Adult Nursing/Palliative Care Nursing, Graduate School of Medicine, University of Tokyo, Tokyo, Japan
Etsuko Maeyama
Affiliation:
Department of Adult Nursing/Palliative Care Nursing, Graduate School of Medicine, University of Tokyo, Tokyo, Japan
Masako Kawa
Affiliation:
Department of Adult Nursing/Palliative Care Nursing, Graduate School of Medicine, University of Tokyo, Tokyo, Japan
Yuki Shirai
Affiliation:
Department of Adult Nursing/Palliative Care Nursing, Graduate School of Medicine, University of Tokyo, Tokyo, Japan
Mitsunori Miyashita
Affiliation:
Department of Adult Nursing/Palliative Care Nursing, Graduate School of Medicine, University of Tokyo, Tokyo, Japan
Keiko Kazuma
Affiliation:
Department of Adult Nursing/Palliative Care Nursing, Graduate School of Medicine, University of Tokyo, Tokyo, Japan
Takeshi Okabe
Affiliation:
Soushukai Okabe Clinic, Miyagi, Japan
*
Corresponding author: Tomomi Sano, Department of Adult Nursing/Palliative Care Nursing, Graduate School of Medicine, University of Tokyo, 7-3-1 Hongo, Bunkyo-ku, Tokyo 113-0033, Japan. E-mail: [email protected]
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Abstract

Objectives:

The aim of the study was to clarify the care experience of primary caregivers when caring for a terminal cancer patient in the home with the assistance of a home palliative care service. Participants were asked to provide background data and to evaluate their experience of caregiving and of the patient's response throughout the period of home palliative care, up to the time of death.

Methods:

One hundred twelve primary family caregivers were a mailed self-report questionnaire, and 74 valid questionnaires were returned (response rate 66%).

Results:

Ninety percent felt that the patient's condition of mind and body was reasonably stable, and 75% felt that the death was peaceful. About 90% reported a deepening of their bond with the patient and that the bond of other family members deepened also. Sixty percent reported that the burden of caregiving was not too great or not felt at all. Approximately 90% judged that the patient retained his or her own personal qualities to the end. Ninety percent also felt that they had done their best in their caregiving and judged that home care had been beneficial for the deceased, for the primary caregiver him/herself, and for other family members. These primary caregivers' evaluations of caring for a terminally ill patient at home in conjunction with a home palliative care service were both high and positive.

Significance of results:

Our findings suggest that it is important to maintain the patient's personal qualities up to the time of death through appropriate symptom management, to respect the family bond of the household, and to provide professional support in order to reduce the load on the family. If appropriate care is provided, peaceful home death will be possible, resulting in significant benefits for patients and their families in Japan.

Keywords

Family caregiverCare experienceTerminal cancer patientHome palliative careHome death
Type
Research Article
Information
Palliative & Supportive Care , Volume 5 , Issue 4 , December 2007 , pp. 389 - 395
Copyright
Copyright © Cambridge University Press 2007

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References

REFERENCES

Akimoto, M., Oshima, I., Shibano, M., et al. (eds.). (2003). The Yuhikaku Dictionary of Social Welfare. Tokyo: uhikaku (in Japanese).Google Scholar
Cantwell, P., Turco, S., Brenneis, C., et al. (2000). Predictors of home death in palliative care cancer patients. Journal of Palliative Care, 16, 23–28.CrossRefGoogle ScholarPubMed
Cho, O., Kounuma, N., & Ito, M. (2003). A study of care burden in home palliative care. The Japanese Journal of Clinical Research on Death and Dying, 26, 77–83 (in Japanese).Google Scholar
Doyle, D. (2004). Palliative medicine in the home: An overview. In Oxford textbook of palliative medicine, 3rd ed., Doyle, D., Hanks, G., Cherny, N., et al. (eds.), pp. 1097–1114. New York: Oxford University Press.Google Scholar
Folkman, S. (1997). Positive psychological states and coping with severe stress. Social Science and Medicine, 45, 1207–1221.CrossRefGoogle ScholarPubMed
Given, B., Wyatt, G., Given, C., et al. (2004). Burden and depression among caregivers of patients with cancer at the end of life. Oncology Nursing Forum, 31, 1105–1117.CrossRefGoogle ScholarPubMed
Goldstein, N.E., Concato, J., Fried, T.R., et al. (2004). Factors associated with caregiver burden among caregivers of terminally ill patients with cancer. Journal of Palliative Care, 20, 38–43.Google ScholarPubMed
Gomes, B., & Higginson, I.J. (2006). Factors influencing death at home in terminally ill patients with cancer: Systematic review. British Medical Journal, 332, 515–521.CrossRefGoogle ScholarPubMed
Ida, E. (2004). Home care by the palliative care unit. In Hospice and palliative care white paper, Editorial Committee of the Japanese Hospice Palliative Care Foundation, pp. 86–93. Tokyo: Seikaisha (in Japanese).Google Scholar
Kiba, S. (1998). At-home hospice care reconsidered. The Japanese Journal of Hospice and Palliative Care, 8, 189–195 (in Japanese).Google Scholar
Minister's Secretariat, Ministry of Health and Welfare. (2000). Terminal Care This Century. Ministry of Health and Welfare (in Japanese).Google Scholar
Ministry of Health and Welfare. (1995). White Paper on Health and Welfare 1995. Tokyo: Kousei Mondai Kenkyukai (in Japanese).Google Scholar
Ministry of Health, Labour and Welfare. (2004). Report of an investigative meeting on end of life medical care: The state of end of life medical care now and in the future. Available at: http://www.mhlw.go.jp/shingi/2004/07/s0723-8.html (in Japanese).Google Scholar
Payne, R. & Gonzales, G.R. (2004). The management of pain. In Oxford textbook of palliative medicine, 3rd ed, Doyle, D., Hanks, G. Cherny, N., et al. (eds.), pp. 288–458. New York: Oxford University Press.Google Scholar
Phipps, E.J. & Braitman, L.E. (2004). Family caregiver satisfaction with care at end of life: Report from the cultural variations study (CVAS). American Journal of Hospice & Palliative Care, 21, 340–342.CrossRefGoogle ScholarPubMed
Rossi Ferrario, S., Cardillo, V., Vicario, F., et al. (2004). Advanced cancer at home: Caregiving and bereavement. Palliative Medicine, 18, 129–136.CrossRefGoogle ScholarPubMed
Singer, Y., Bachner, Y.G., Shvartzman, P., et al. (2005). Home death—The caregivers' experiences. Journal of Pain and Symptom Management, 30, 70–74.CrossRefGoogle ScholarPubMed
Stajduhar, K.I. (2003). Examining the perspectives of family members involved in the delivery of palliative care at home. Journal of Palliative Care, 19, 27–35.CrossRefGoogle ScholarPubMed
Teno, J.M., Clarridge, B.R., Casey, V., et al. (2004). Family perspectives on end-of-life care at the last place of care. JAMA, 291, 88–93.CrossRefGoogle ScholarPubMed
Thomas, K. (2003). A modern way of dying. In Caring for the Dying at Home, Thomas, K. (ed.), pp. 15–26. Abington, UK: Radcliffe Medical Press Ltd.Google Scholar
Yamamoto-Mitani, N., Ishigaki, K., Kuniyoshi, M., et al. (2002). Impact of the positive appraisal of care on quality of life, purpose in life, and will to continue care among Japanese family caregivers of older adults: Analysis by kinship type. Nippon Koshu Eisei Zasshi, 49, 660–671 (in Japanese).Google Scholar
Yang, L., Sakamoto, N., & Marui, E. (2006). A study of home deaths in Japan from 1951 to 2002. BMC Palliative Care, 5, 2.CrossRefGoogle ScholarPubMed