白血病患儿对所患疾病的了解程度及其获知途径的质性研究

The understanding level of disease and the way of obtaining disease information of children with leukemia： a qualitative study

目的探讨疾病缓解期的白血病患儿对疾病的了解程度，以及他们获得疾病相关信息的途径，以帮助护士和患儿家长选择恰当内容和途径与患儿沟通疾病信息。方法采用质性研究方法，以半结构式的开放性访谈问卷对25例白血病患儿的陪住家长进行个体化的深入访谈，使用内容分析法分析资料。结果急性白血病缓解期的患儿对其所患疾病有不同程度的了解，其获得疾病相关信息的途径与其心理成熟度有关。结论医护人员和家长应根据患儿的年龄、患病时间长短及患儿思维水平选择告知疾病信息的内容，并且根据患儿的心理成熟度为其提供获得信息的途径。

Objective To describe the understanding level of disease of children with leukemia and their ways of obtaining disease information in order to help nurses and parents to select appropriate content and manners to communicate with children about disease information. Methods In- depth interviews were conducted with 25 children＇ parents using a descriptive qualitative research method, and the data were analyzed using content analysis. Results Children during remission stage of leukemia had different understanding levels of their disease. Ways of children with leukemia to Obtain disease information was correlated with their mental maturity. Conclusions Disease information should be told according to children＇s age, disease course and level of thinking, and health professionals and parents could provide appropriate ways of obtaining information for children on basis of their mental maturity.