Investigation on the pediatric home care.

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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