Development of a nursing system to relieve the degree of stress in families of children with disabilities

本研究的目的是了解残疾儿童及其家人在门诊的护理状况，并制定一种护理方法，以缓解家庭的压力程度。结果如下：1.通过在门诊进行问卷调查的方式，对需要家庭护理的残疾儿童及其家人的护理状况进行了调查。研究对象为日本门诊部512名护士长。与家庭护理相关的护理实施率高于与家庭健康和经济相关的护理实施率。门诊部儿科专科护士的存在与护理质量之间的关系被确定。我们走访了美国的两家脊柱裂诊所，以收集有关医疗团队系统的数据。脊柱裂诊所被认为是为患者及其家人提供全面护理的非常有效的系统。一名特定的护士作为医疗队的协调员发挥了特殊的作用。我们制定了护理指南，重点是对脊柱裂儿童及其家人的全面护理。我们还研究了护理实践对孩子获得自我照顾的影响，以及母亲感受到的压力程度。在一些情况下，母亲感受到的压力程度随着孩子的改善而减少，与疾病管理实践无关。我们举办了护理论坛，以便将研究结果传播给更多的护士，并建立护理网络。

The purposes of this research were to identify the state of nursing for children with disabilities and their families at outpatient clinics, and to develop a nursing to relieve the degree of stress experienced by the family.Results were as follows :1. We investigated the state of nursing care for children who require home care and their families by means of a questionnaire conducted at outpatient clinics. Subjects were 512 head nurses of outpatient clinics in Japan. The rates of practice of nursing care related to home care were higher than those of care related to families' health and finance. A relationship was identified between the existence of a pediatric nurse specialist at the outpatient clinic and the quality of nursing.2. We visited two spina bifida clinics in the U.S.A. in order to collect data regarding medical team systems. The spina bifida clinic was identified as very effective system for providing comprehensive care for patients and their families. A specific nurse had a special role as coordinator of the medical team.3. We developed nursing guidelines focused on total care for children with spina bifida and their families. We also examined the effect of nursing practice on attainment of self-care by children and on the degree of stress experienced by mothers. In several cases, the degree of stress felt by mothers decreased when children improved, independently of illness management practice.4. We held a nursing forum in order to distribute the results of this research to a wide audience of nurses, and to build a nursing network.