Continuing care of children with spina bifida at an outpatient clinic

Children with spina bifida accompanied by chronic conditions acquire the activities of daily life and adapt to social life individually. The purposes of this study were (1) to examine the characteristics of independent activities in daily life in young Japanese children with spina bifida, (2) to identify the relationship between their independent activities in daily life and home care by their mothers, and (3) to identify the relationship between their independent activities in daily life and the stress of their mothers. The subjects were 19 pairs of Japanese mothers and their young children with spina bifida. It was found that the quality of home care by mothers influenced the activities of daily life of their children. Furthermore, it was found that problems related to the mobility of the children were the main stressors of their mothers. These findings suggested that nursing interventions in the outpatient clinic need to focus not only on illness-related risk reductions, but also on the progression of developmental tasks.