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Association between family satisfaction and caregiver burden in cancer patients receiving outreach palliative care at home

Published online by Cambridge University Press:  02 May 2017

Yoko Naoki ,
Yoshinobu Matsuda ,
Isseki Maeda ,
Hideka Kamino ,
Yoko Kozaki ,
Akihiro Tokoro ,
Norimasa Maki  and
Minoru Takada
Yoko Naoki
Affiliation:
Department of Internal Medicine, Tohoku University Graduate School of Medicine, Sendai, Japan
Yoshinobu Matsuda*
Affiliation:
Department of Psychosomatic Internal Medicine and Supportive and Palliative Care Team, National Hospital Organization Kinki-Chuo Chest Medical Center, Sakai, Osaka, Japan
Isseki Maeda
Affiliation:
Garatia Hospital Hospice, Minoo, Osaka, Japan
Hideka Kamino
Affiliation:
Home Care Support Center, Hanwa Daiichi Senboku Hospital, Sakai, Osaka, Japan
Yoko Kozaki
Affiliation:
Department of Home Healthcare Sales Promotion, Teijin Home Healthcare Limited, Sakai, Osaka, Japan
Akihiro Tokoro
Affiliation:
Department of Psychosomatic Internal Medicine and Supportive and Palliative Care Team, National Hospital Organization Kinki-Chuo Chest Medical Center, Sakai, Osaka, Japan
Norimasa Maki
Affiliation:
Maki Clinic, Sakai, Osaka, Japan
Minoru Takada
Affiliation:
Department of Internal Medicine, Hanwa Daini Senboku Hospital, Sakai, Osaka, Japan
*
Address correspondence and reprint requests to: Yoshinobu Matsuda, Department of Psychosomatic Internal Medicine and the Supportive and Palliative Care Team, National Hospital Organization, Kinki-Chuo Chest Medical Center, 1180 Nagasone-cho, Kita-ku, Sakai, Osaka, 591-0021, Japan. E-mail: ymatsuda@kch.hosp.go.jp.
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Abstract

Objective:

Little is known about the associations between family satisfaction with end-of-life care and caregiver burden. We conducted a researcher-assisted questionnaire survey to clarify the impact of caregiver burden on family satisfaction and to determine the types of burden that decrease family satisfaction.

Method:

Bereaved family caregivers of patients with advanced cancer who received our outreach palliative care service were retrospectively identified. Family satisfaction with the end-of-life care provided by the palliative care service and caregiver burden were quantified using the Japanese versions of the FAMCARE Scale and the Zarit Burden Interview (ZBI), respectively.

Results:

Our study subjects included 23 family caregivers. The mean scores on the FAMCARE Scale and the ZBI for the total population were 72.8 ± 11.2 and 22.8 ± 17.3, respectively, indicating moderate-to-high satisfaction and low-to-moderate burden. Caregiver burden had a strong negative correlation to family satisfaction with end-of-life care (Spearman's rho [ρ] = −0.560, p = 0.005), which remained after adjustment for potential confounders (standardized beta [β] = −0.563, p = 0.01). Several burden items—including loss of control, personal time, social engagement with others, feeling angry with the patient, feeling that the patient wants more help than he/she needs, and a wish to leave the care to someone else—were associated with decreased satisfaction. The major cause of dissatisfaction for family members included the information provided regarding prognosis, family conferences with medical professionals, and the method of involvement of family members in care decisions.

Significance of results:

Caregiver burden can be a barrier to family satisfaction with end-of-life care at home. A home care model focused on caregiver burden could improve end-of-life experiences for patients and family caregivers.

Keywords

Family satisfactionCaregiver burdenEnd-of-life careCancer
Type
Original Article
Information
Palliative & Supportive Care , Volume 16 , Issue 3 , June 2018 , pp. 260 - 268
Copyright
Copyright © Cambridge University Press 2017 

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