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

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 < 0.05). The mean score of FES was 113.6 ± 14. As the result of multiple regression analysis, lower family FAD scores ([sb] = ?0.61, p < 0.01) indicated higher family function and greater age of participants (sb = 0.495, p < 0.01) was correlated with higher WHOQOL scores (F = 15.208, p < 0.01). Conclusions: Our results indicated that the individual QoL depended on the age of participants (equals the years of experience caring for a SMID child) and the recognition of family function as a whole. Thus, to improve family members’ QoL, we should focus on individuals and also approach the family as a whole.