6例跟踪护理对肝豆状核变性患儿的影响

目的探讨跟踪护理对肝豆状核变性（HLD）患儿生活质量及临床症状的影响。方法利用护理人员和患儿的同乡关系,采取一对一或一对二的形式进行跟踪护理,给予健康教育、心理指导、饮食及用药的监督后,应用汉化版简明健康调查表（SF-36）评估跟踪和非跟踪患儿的生活质量以及HLD患儿的临床症状。结果HLD患儿在跟踪护理前生活质量较中国常模指标明显下降,除生理功能、情感职能和社会功能外,其余5个维度差异均有统计学意义（P〈0.05）。在实施跟踪护理后,HLD患儿的生活质量各项指标较跟踪前显著提高（P〈0.05）,除总体健康指数外,其余各项维度均接近中国常模水平,差异无统计学意义。HLD患儿在跟踪护理后临床症状也有明显改善（总有效率为83.7%）。结论本文研究表明,跟踪护理不仅可以提高患儿的生活质量,还能改善患儿的临床症状。

The influences of follow-up care on 6 children suffered from hepatolenticular degeneration

Objective To study the influences of follow-up care on the life quality and clinical symptoms of the children suffered from hepatolenticular degeneration(HLD). Methods The follow-up care was based on the home fellowship between nursing staff and the sick children.The health education,psychological direction,diet and medication supervision were given to the children on a one-to-one or one-to-two basis.A 36-item short-form health survey of Chinese edition(SF-36)was used to elvalute their life qualities betwee...