Kondo N, Ogura A, Kawamura S, Tokuyama S, Miyawaki I, Konishi N, Nagasawa T, Ezawa K, Wako F
Department of Home Care, Tokyo Metropolitan Neurological Hospital, Japan.
No To Hattatsu. 1996 May;28(3):225-30.
QOL is the important issue for chronically ill children. We visited a girl, 8 years old and 24 hours dependent on a ventilator. We talked to her, and observed her daily life, mainly on the following points: (1) what she is doing; and (2) how often, and what kind of care she needs at school and at home. Then we discussed the problems, QOL and nursing care. She enjoyed her school life with her many friends, and received respiratory care, sanitary care, and other care for 11 hours and 19 minutes in average per day. 93.1% of the care was taken by her parents and volunteer care givers, so that they wanted to have nurses care for her. Many kinds of nursing care service were necessary as soon as possible.
生活质量是慢性病患儿的重要问题。我们探访了一名8岁的女孩，她24小时依赖呼吸机。我们与她交谈，并观察了她的日常生活，主要关注以下几点：（1）她在做什么；（2）她在学校和家里需要何种护理以及护理的频率。然后我们讨论了相关问题、生活质量和护理。她与许多朋友一起享受学校生活，平均每天接受11小时19分钟的呼吸护理、卫生护理和其他护理。93.1%的护理由她的父母和志愿者护理人员提供，因此他们希望有护士来照顾她。尽快提供多种护理服务很有必要。
