罕见病患儿照顾者真实体验的质性研究

Real experience of caregivers for children with rare diseases:a qualitative study

目的探究罕见病患儿照顾者的真实体验,为针对性地进行健康服务提供参考依据。方法采用质性研究方法。采用目的抽样法,于2019年4月—2021年12月选取首都医科大学宣武医院儿科住院的14名罕见病患儿照顾者为研究对象。通过半结构式访谈收集资料,采用Colaizzi 7步分析法分析资料。结果罕见病患儿照顾者的真实体验可归纳为心理感受复杂、照顾负荷过重、家庭功能脆弱、渴望获取疾病相关信息、积极面对问题5个主题。结论罕见病患儿照顾者在照顾患儿的过程中承担着多方面负担,应对其提供专业的知识技能指导和心理疏导,帮助照顾者建立积极的应对方式,以减轻其照护负担。

Objective To explore the real experience of caregivers for rare disease patients,so as to provide reference for targeted health services.Methods This study was qualitative.From April 2019 to December 2021,purposive sampling was used to select 14 caregivers of rare disease children hospitalized in the Department of Pediatrics of Xuanwu Hospital of Capital Medical University as the research subject.The data was collected through semi-structured interviews,and analyzed using the Colaizzi 7-step analysis method.Results The real experience of caregivers for rare disease patients was summarized into five themes,including complex psychological feelings,excessive care burden,fragile family function,desire to obtain disease-related information,and actively facing problems.Conclusions Caregivers for children with rare diseases bear various burdens in the process of taking care of them.Related staff should provide professional knowledge and skills guidance and psychological counseling to caregivers,help them establish positive coping styles,and reduce their care burden.