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.
Highlights
In Japan, about 70% of 36,650 children with severe motor and intellectual disabilities (SMID) are living at home, and the number of families who home rear children with SMID is increasing [1]-[3]
Our results indicated that the individual quality of life (QoL) depended on the age of participants and the recognition of family function as a whole
The family members included in this study were the primary caregivers, their spouses, and siblings aged 12 years or older; if there was more than one sibling, the primary caregiver chose one sibling to participate and provide responses.In this study, we defined a primary caregiver is the one who takes a role of home care of a child with SMID in a family members live together
Summary
In Japan, about 70% of 36,650 children with severe motor and intellectual disabilities (SMID) are living at home, and the number of families who home rear children with SMID is increasing [1]-[3]. Research about the quality of life (QoL) of family members and the effects on the family system of children with SMID is limited. Needham et al [6] focused on the adaptive behavior of individuals with mucopolysaccharidosis type II (MPS II), and the impact of MPS II on QoL of the family members and the family system Their results from the Peds QL Family Impact Module indicated that families of patients with MPS II experienced a lower overall health-related quality of life and lower overall family functioning (including lower emotional and cognitive functioning) than those families with children who had chronic illnesses but resided in inpatient settings. About 70% of Japanese children with severe motor and intellectual disabilities (SMID) live at home, and the number is increasing.
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