Ogura, K., Asami, S., Fumiko, H. and Hayama, K. (2012) Storytelling of Mothers about Decision Making to Introduce Medical Care at Home for Persons with Severe Motor and Intellectual Disabilities. Bulletin of School of Nursing Saitama Medical University, 5, 23-30. (In Japanese)

has been cited by the following article:

• TITLE: Assessment of Quality of Life, Family Function and Family Empowerment for Families Who Provide Home Care for a Child with Severe Motor and Intellectual Disabilities in Japan

  AUTHORS: Rie Wakimizu, Keiko Yamaguchi, Hiroshi Fujioka, Chieko Numaguchi, Kaori Nishigaki, Naho Sato, Miyuki Kishino, Hiroshi Ozawa, Nobuhiro Iwasaki

  KEYWORDS: Home Care, Caregivers, Family, Japan, Quality of Life, Children with Disabilities, Severe Motor and Intellectual Disabilities

  JOURNAL NAME: Health, Vol.8 No.4, February 26, 2016

  ABSTRACT: Background: About 70% of Japanese children with severe motor and intellectual disabilities (SMID) live at home, and the number is increasing. Family members have an enormous burden of daily physical care for these children. A top priority is to understand quality of life (QoL), family function, and family empowerment to effectively support these families. We aimed to assess current living situations of families with a SMID child, and to reveal the relationships between QoL, family function, and family empowerment. Methods: Sixty-five family members from 34 families with a SMID child participated in this study. We assessed 5 parameters using the Japanese versions of the following instruments: World Health Organization Quality of Life 26 (WHOQOL26), Kinder Lebensqualitats Fragebogen (KINDL), Family Assessment Device (FAD), Family Adaptability and Cohesion Evaluation Scale KG-4 (FACESKG-4), and Family Empowerment Scale (FES). Correlation and multiple regression analyses were conducted; QoL score was the objective variable. Results: Participants included 54 parents (34 mothers, 20 fathers) and 11 siblings. The mean age of SMID children was 10.4 ± 5.03 years. Twenty-two children needed multiple types of medical care. The mean age of parents and siblings was 41.5 ± 6.16 years and 15.5 ± 2.35 years, respectively. The mean QoL score (3.28 ± 0.5) was similar to the Japanese average. The mean KINDL score (77.2 ± 12.1) was higher than those of previous studies. The mean FAD score was 1.97 ± 0.32. For FACEKG-4, the score of adaptability was correlated with WHOQOL score (r = 0.459, p