Investigation on the pediatric home care.

我们调查了家庭中残疾儿童的真实情况，并从护理的角度对其支持系统进行了思考。我们采访了38位在家照顾残疾儿童的母亲。这些孩子的年龄分布在10个月到19岁之间。其中脑神经疾病20例，先天性心脏病5例，呼吸系统疾病1例，内分泌疾病4例，染色体异常1例，神经肌肉疾病3例，后天性脑病4例。2.随着残疾孩子的成长，照顾他们的孩子逐渐变得困难。3.母亲觉得照顾孩子是一种负担4.母亲在青春期觉得很难照顾孩子.5.母亲在学校里经历了很多麻烦。在…上对医务人员提出了更多的要求：1.医疗护理技术质量的提高；2.疾病和疾病信息获取的便捷性；3.社会福利信息的可获得性；4.医疗和社会设施的扩展和完善；5.急诊管理的合理化；6.减轻经济负担；7.加强医疗、教育和家庭的联系。残疾儿童母亲周围的情况没有根本改变。真实情况如下：1.母亲在出院时不能拥有家庭护理的实际形象。2.母亲感觉像是一种负担，特别是当孩子需要医疗照顾，不能指望父亲对孩子的照顾(特别是医疗护理)进行合作时。3.母亲通常因为担心孩子的未来而睡不着觉。此外，在学校生活中和青少年中也出现了许多问题和困难。家庭护理是指在自己的家里照顾孩子，由经过认证的家庭保健或社区保健机构提供或监督(儿童保健护理单元3，Adele Pillitteri，1999)。但与对医务人员的需求相比，目前残疾儿童的儿科居家护理支持体系还不够完善。考虑到有残疾子女的母亲，几乎没有任何公共支助系统。我们认为，残疾儿童家庭的需求对于加强儿科家庭护理至关重要。在未来，我们期待这项研究将成为儿科家庭护理支持系统的基础。较少

We investigated the real situation of the handicapped children at home, and considered on its support system in a nursing point of view. We interviewed 38 mothers taking care of handicapped children at home. The age of the children were distributed from ten months to nineteen years. They are 20 brain and nerve diseases, 5 congenital heart diseases, 1 respiratory disease, 4 endocrine diseases, 1 chromosome aberration, 3 nerve and muscle diseases, and 4 acquired encephalopathies.We found the following common problems in the home care of handicapped children in Japan.1.Mothers have to take care of children, and another family members (especially father!) are generally reluctant to put themselves into practice.2.Mothers gradually become difficult to take care of their handicapped children according to their growth.3.Mothers feel like a burden to take care of children4.Mothers feel difficult in mental care of children at their puberty.5.Mothers experienced many troubles in the school.On the … More demands for the medical staffs, we found :1.Improvement in the quality of medical and nursing technology.2.Convenience for getting information of diseases and disorders.3.Availability of the information on the social welfare.4.Expansion and improvement the medical and social facilities.5.Clarification of the management during the emergency.6.Reduction of the economical burden.7.Reinforcement of the connections of medicine, education and family.The circumstances surrounding mothers with handicapped children have unaltered essentially. The real situations are as follows :1.Mothers are not able to possess the actual image of the home care at the time of discharge.2.Mothers feel like a burden especially when children need the medical care and cannot expect fathers' cooperation for the children care (especially medical care).3.Mothers are generally sleepless with worry about their children's futures.Moreover many problems and the difficulties appear in school life and also in adolescence.Home care is care of children in their own home, provided by or supervised through a certified home health care or community health care agency (Child health nursing Unit 3, Adele Pillitteri, 1999). But comparing with the demands for the medical staffs, support system of pediatric home care is not enough for handicapped children now. There is hardly any public support system in consideration of mothers with handicapped children. We think the needs of family with handicapped children are essential for the reinforcement of pediatric home care. In future, we expect this research will become the basis of the support system for pediatric home care. Less