慢性疾病轨迹模式下颅咽管瘤相关下丘脑性肥胖患儿照顾者照护体验的质性研究  

Care experience of caregivers of children with craniopharyngioma-related hypothalamic obesity:a qualitative study based on the chronic illness trajectory model

作　　者：王为杰 邓瑛瑛[2] 任英 黄佳颖 张静 史蕾[1] Wang Weijie;Deng Yingying;Ren Ying;Huang Jiaying;Zhang Jing;Shi Lei(School of Nursing,Southern Medical University,Guangzhou 510515,China;Department of Neurosurgery,Nanfang Hospital,Southern Medical University,Guangzhou 510515,China)

机构地区：[1]南方医科大学护理学院,广州510515 [2]南方医科大学南方医院神经外科,广州510515

出　　处：《中国实用护理杂志》2024年第23期1774-1780,共7页Chinese Journal of Practical Nursing

基　　金：深圳市“医疗卫生三名工程”项目资助(SZZYSM202108013)。

摘　　要：目的:基于慢性疾病轨迹模式,了解颅咽管瘤相关下丘脑性肥胖(CP-HO)患儿照顾者的真实体验,为制订相应的疾病管理方案提供参考。方法:通过目的抽样法,于2023年5—7月选取就诊于南方医科大学南方医院神经外科的17名CP-HO患儿照顾者进行半结构式访谈,以Colaizzi 7步分析法对访谈资料进行分析。结果:17名CP-HO患儿照顾者年龄为24~46岁,男3名,女14名;共提炼出3个主题,体质量前驱期:疾病认知匮乏,自我概念弱化;体质量上升期:需求负担凸显,生活模式转变;体质量稳定期:压力希望齐驱,洞悉生命宝贵。结论:医护人员应关注并理解CP-HO患儿照护的疾病照护体验,提供全面、系统的解决策略,以促进照顾者良好的疾病应对,提升患儿体质量管理效果和家庭生命质量。Objective To understand the real experience of caregivers of children with craniopharyngioma-associated hypothalamic obesity(CP-HO)based on the chronic disease trajectory model,so as to provide a reference for formulating corresponding disease management plans.MethodsFrom May 2023 to July 2023,semi-structured interviews were conducted with 17 caregivers of children with CP-HO who were admitted to the Department of Neurosurgery,Nanfang Hospital,Southern Medical University through purposive sampling.The interview data were analyzed by Colaizzi 7-step analysis method.ResultsThe 17 caregivers of children with CP-HO were 24 to 46 years old,including 3 males and 14 females.A total of 3 themes were extracted.Prodromal phase of weight:lack of disease cognition and weakening of self-concept;during the period of weight increase,the demand burden became prominent and the life pattern changed;weight stability:pressure,hope,and insight into the value of life.ConclusionsFor promoting a good disease response of caregivers and improving the weight management effect of children and the quality of family life,medical staff should pay attention to and understand the disease care experience of children with CP-HO,and provide comprehensive and systematic solution strategies.

关 键 词：定性研究 颅咽管瘤 下丘脑性肥胖 照顾者 照护体验 

分 类 号：R473.73[医药卫生—护理学]