Daily activities and needs of children under steroid therapy and their families

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This study was conducted to clarify the status of children receiving oral steroid therapy and their families, and evaluate methods to support them for more independent living. Semi-structured interviews were performed in 7 children with nephrotic syndrome and their families with consideration to protect their privacy. Of these 7 children, 2 were taking oral steroids, 1 was scheduled to discontinue them, 3 had discontinued them, and 1 was taking an immunosuppressant at the interviews. In all children, the primary disease was being alleviated, but recurrence had been experienced, and treatment had been prolonged. One child taking steroids showed mild proteinuria, and 1 taking an immunosuppressant had developed proteinuria from immediately after a school excursion, which the child made 1 week before the interview. Of the 7 children, 4 contracted varicella, measles, mumps, and herpes after alleviation of symptoms. Since these infections may contribute to recurrence, their prevention is imp … More ortant During hospitalization and at discharge, explanations about the use of oral steroids and points of attention in daily lives were made mostly by physicians and infrequently by nurses. After discharge, most children avoided attending school or kindergarten while infections persisted as a measure to prevent infection, but gargling, hand washing, or wearing a mask in the crowd was not rigorously practiced, and reluctance of children to do things different from other children may underlie this poor compliance. Communication and cooperation between school and home are considered to have been adequate, and people around these children appeared to have helped them in their school activities. However, with prolongation of the disease, steroid therapy, and rest and dietary regimen, the children felt stress for not being able to behave as other children. The parents, seeing their children lapsing into such a state, worried about their mental and physical development, and gradually allowed them to be more active by their own judgment while continuing the treatment, but they did not appear to have gone to the point of expanding the range of the activities. Less