Development of a Family Caregiver Assessment Scale for People Experiencing End-of-Life at Home

Sunday, 22 July 2018

Junko Inagaki, PhD, MNS, RN, RSW
Faculty of Nursing, Yamanashi Prefectual University, Koufu City, Yamanashi, Japan
Chizuru Nagata, PhD
Division of Community / Gerontological Nursing, Yamaguchi University, Ube, Yamaguchi, Japan
Etsuko Sato, PhD, RN, PHN
Home care, Yamanashi Prefectual University, Kofu, Japan
Hironori Yada, MMS
Department of Clinical Nursing, Yamaguchi University Graduate School of Medicine, Ube, Japan
Misaki Kumakura, MSN, RN, PHN
Fundamentals of nursing, University of Yamanashi, Chuo, Yamanashi, Japan
Yuji Shindou, MSN
Fundamentals of Nursing, Yamanashi Prefectural University, Kofu(-shi),Yamanashi(-ken), Japan
Rina Hakuta, PhD, RN, PHN
National Cancer Center Hospital East, Kashiwa City, Chiba, Japan
Akiko Nishimura, PhD, MNS, RN
1-6-1 Ikeda, Yamanashi Prefectural University, Kofu,, Japan
Hiromi Okubo, MSN
Basic Nursing Science, Yamanashi Prefectural University, kofu, Japan
Kumiko Iguchi, MSN, RN
Basic Concept of Nursing, Yamanashi Prefectural University, Tyuou-shi/ Yamanashi, Japan

Background: The rate of death in hospitals in Japan is 75.8% in 2016 (Japan Ministry of Health, Labor and Welfare, 2016), and in view of this situation, the Ministry of Health, Labor and Welfare is promoting home healthcare with visiting nurses as support. Japan has a unique care insurance system, in which people can choose different care services according to needed level of care, but there are some restrictions and family members are still responsible for care. Therefore, it is necessary for visiting nurses to accurately assess and empower family care ability. The scale of care burden of families has been developed, however, there is no scale to assess their care competence.

Aim: The aim of this study was to develop a tool, the Family Caregiver Assessment Scale (FCAS) for people experiencing end of life at home, and to evaluate the reliability and validity of the scale.

Methods: Using our early version of FCAS, which was composed of 57 items, data from 389 family caregivers were statistically analyzed. SPSS version 21.0 was used for the item analysis and exploratory factor analysis. Amos version 21.0 was used for confirmatory factor analysis.Two-tailed T-test was conducted in good –poor analysis for item analysis, Pearson’s product-moment correlation was calculated in Item-Total correlation analysis, and correlation coefficient was calculated in the reliability and validity analysis for Zarit Burden Interview.

Results: As a result of exploratory factor analysis after eliminating items with ceiling effect, floor effect, and non-normal distribution, a total of five factors with19 items emerged. These five factors are; Caring ability for home care, Ability for intra-family support, Ability to connect with neighborhoods, Ability to adjust daily living, and Ability to acquire information. The item-total correlation coefficient was r=0.134-0.918 (P<0.01), and good-poor analysis showed significant differences (P<0.001) in all the 19 items. The Cronbach alpha coefficient of five factors were 0.810-0.927, and that of FCAS was 0.888. As results of confirmatory factor analysis, the Comparative fit index was 0.901, and the root mean square error of approximation was 0.09.As FACS was positively correlated with some of the components of Zarit Burden Interview, it indicate care competence weakened the care burden. But there was a negative correlation with sense of restraint.

Discussion: The five factors that appeared in the exploratory factor analysis were examined by confirmatory factor analysis, and the validity was shown. Among these five factors, Caring ability for home care has also been clarified in care practical skill in research which clarified the caregiving constituent elements of Japanese family caregivers (Ichiki, 2014). The same result was obtained at terminal stage. It is said that social support is effective at the terminal stage (McLoughlin, 2015) and it is the same for patients with advanced cancer. (Leow, 2014). In this research, Ability for intra-family support, Ability to connect with neighborhoods emerged, so we thought these will be care abilities as a force to accept social support. In addition, Ability to adjust daily living is an important factor as it requires 24 hours care at terminal stage. So this factor can be inferred. About Ability to acquire information, it is said that the anticipatory information for the family caregiver at the end of the time was effective (Ewing, 2013), and booklet etc is also effective (Luker, 2015). The outlook for the patient's condition was important at the end of life care at home. In addition, as the Cronbach alpha coefficient of five factors were 0.810 - 0.927, internal consistency was high. And as good-poor analysis showed significant differences (P <0.001), item identification was high.

Conclusion: The FCAS, which composed of five factors and19 items, has sufficient reliability and validity, and is useful as an assessment tool for evaluating family caregiver ability to undertake care for people experiencing end of life at home.

Ethical consideration: This study was approved by the Ethical Review Board of Yamanashi Prefecture University.