Action Research to create a place for children with life threatening illness:An exploration of Children's Hospice in Japan

本研究为行动研究，旨在探索日本儿童安宁疗护的可行性。本研究的目的是厘清罹患危及生命疾病的儿童及其父母的经历，以及他们的缓和疗护需求。他们的姑息治疗需求是他们发展的需求。特别是婴儿期和高中毕业后的生活质量下降。我们关注了三例处于晚期的儿童，不仅发现了医疗护理，而且发现了儿童和家庭发展支持的必要性。接下来，我们做了一些公民论坛和会议，作为儿科姑息治疗（儿童临终关怀）的启发项目，以及一些支持儿童和家庭生活质量的项目。最后，我们建立了一个儿童临终关怀网络，不仅与医疗服务提供者合作，还与普通人和多范围的人合作。通过行动研究的过程，指出了日本儿童临终关怀的发展方向。

This study was Action Research for exploration the possibility of Children's Hospice in Japan. The purpose of this research was to clarify the experiences of children with life threatening illness and their parents, and their palliative care needs. Palliative care needs of them are needs for their development. Especially, QOL in infancy and after graduate high school were decreasing. We have concerned with three cases of children in terminal stage and found not only medical care but also the necessity of children's and family developmental support. Next, we made some citizen forum and meetings as enlighten programs for pediatric palliative care (children's hospice), and some programs to support the children's and the family's QOL. Finally, we made a network for children's hospice through cooperating with not only heath care providers but also ordinary people and people in multiple ranges. Through the process of action research, a direction for children's hospice in Japan were showed.