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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: hasada-tky@umin.ac.jp
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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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