癫痫患儿直接照顾者照顾感受的质性研究

A qualitative research on caring experience of epilepsy children's direct caregivers

目的了解癫痫患儿直接照顾者在照料患儿期间内心深处的感受。方法采用质性研究中的现象学研究方法,对12例癫痫患儿直接照顾者进行深度的半结构式访谈,并用现象学分析方法进行资料分析。结果通过阅读、分析、反思、分类和提炼,得出4个主题:承受照顾负荷;心理负担过重;家庭照护知识缺乏;支持系统薄弱。结论对癫痫患儿进行定期随访的同时,需关注直接照顾者的身心压力,对其提供专业的居家照护知识指导及心理疏导,以减轻照顾者心理负担,满足他们的需求。

Objective To explore the lived experience of primary caregivers of children with epilepsy. Methods Twelve direct caregivers of epilepsy children participated in half-structured interviews regarding their experience of care-giving. The data were analyzed by method of phenomenological analysis. Results Four themes were extracted including bearing caregiving burden,heavy psychological burden,lack of knowledge of family care and weakness of support system. Conclusions The primary caregivers＇ physical and psychological stress should be paid attention to and it is important to provide professional family care education and psychological counseling to alleviate their psychological burden and satisify their needs.