Development of a New Resilience Scale for Parents of Children with Profound Intellectual and Multiple Disabilities

Abstract

Objetives: As the first step forward building a supporting system for the Parents of Children with Profound Intellectual and Multiple Disabilities (PIMD) at home, we developed a new resilience scale that can be used by multiple professionals to understand the situation of those parents and to provide the necessary support. Methods: First, we collected scale items on the basis of our previous study as well as related reports in the literature. These items were then screened by the research team with knowledge and experience in supporting those parents, finally, 37 items were generated. Then, we asked the parents of children with PIMD who were of elementary school age and above in the Kanto-Shinetsu area to complete a questionnaire. Out of 477 questionnaires sent, 193 were refused, and the data were statistically analyzed. Results: Exploratory factor analysis revealed that the scale was made up of the following seven factors. 1) Understanding and awareness of the child, 2) Empowerment by the child, 3) Use of specialists, 4) Interest and concern in something other than the child, 5) Emotional adjustment, 6) Maintenance of lifestyle balance, and 7) Request for assistances. Cronbach's alpha coefficient of each factor was calculated. The validity was also confirmed by determining the relationship of resilience with parents' well-being. Conclusions: The results suggest that the new resilience scale for parents of children with PIMD developed in this study can be a reliable instrument for assessing resilience in Japanese parents of a child with such disabilities Key words: Resilience Scale for the Parents of a Child with Profound Intellectual and Multiple Disabilities (重度障害児の親のレジリエンス尺度) ，questionnaire(質問紙調査) ， medical care(医療的ケア) ，home care(在宅生活)