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

这项研究是为了澄清接受口服类固醇治疗的儿童及其家庭的状况，并评估支持他们更独立生活的方法。为了保护他们的隐私，对7名肾病综合征儿童及其家人进行了半结构式访谈。在这7名儿童中，2名正在服用口服类固醇，1名计划停止使用，3名已停止使用，1名在访谈时正在服用免疫抑制剂。在所有儿童中，原发病正在减轻，但经历了复发，治疗延长了。一名服用类固醇的儿童出现轻度蛋白尿，一名服用免疫抑制剂的儿童在一次学校短途旅行后立即出现蛋白尿，这是该儿童在采访前一周出现的。在7名儿童中，4名在症状缓解后感染了水痘、麻疹、腮腺炎和疱疹。由于这些感染可能导致复发，因此它们的预防措施是imp…。在住院和出院期间，关于口服类固醇的使用和日常生活中的注意事项的解释大多由医生提出，很少由护士提出。出院后，大多数儿童避免上学或上幼儿园，而感染仍然是预防感染的一种措施，但在人群中漱口、洗手或戴口罩的做法并不严格，儿童不愿做与其他儿童不同的事情可能是导致这种不良遵从性的原因。学校和家庭之间的交流和合作被认为是充分的，这些孩子周围的人似乎在他们的学校活动中帮助了他们。然而，随着疾病的延长，类固醇治疗，以及休息和饮食方案，孩子们因为不能像其他孩子一样表现而感到压力。父母看到孩子陷入这样的状态，担心他们的心理和身体发育，并逐渐允许他们在继续治疗的同时根据自己的判断更加积极，但他们似乎没有到扩大活动范围的地步。较少

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