重型狼疮性肾炎病人主要照顾者照护体验及负担的质性研究

A qualitative research on the care experience and burden of primary caregivers for patients with severe lupus nephritis

[目的]探讨重型狼疮性肾炎(LN)病人主要照顾者的照护过程中产生的内心体验及负担,找出减轻照顾者负担的有效方法,从而改善照顾者的心理健康状况、创造有利于病人康复的家庭环境,促进病人身心健康。[方法]运用质性研究中的现象学研究,对15例重型LN病人主要照顾者进行半结构式面对面深入访谈收集资料,采用Colaizzi分析法对资料进行分析,提炼主题。[结果]共提炼情绪体验的感知、多重压力的挑战、照护能力的缺乏、自我价值的体现4个核心主题。[结论]对重型LN病人主要照顾者进行心理干预、健康教育、有效支持及鼓励其他家属共同合作以减轻照顾者的负性体验,改善家庭关系,促进病人病情的稳定。

objective:to explore the inner experience and care burden in the process of care of the primary caregivers for patients with severe lupus nephritis(LN),and to find out the effective method to reduce the financial burden of caregivers,in order to improve the mental health status of the caregivers,create favorable home environment for patients' rehabilitation,and promote the patient's physical and mental health.Methods:Using the phenomenological approach to qualitative research,a total of 15 primary caregivers of severe LN patients were conducted with face-to-face semi-structured in-depth interviews to collect data.Colaizzi analysis method was used to analyze data and refine the theme.Results:There were four core themes refined:the perception of emotional experience,the challenge of multiple pressure,the lack of care ability,and the embodiment of the self-value.Conclusion:Conducted psychology intervention,health education,effective support,and encourage other family members to work together on the primary caregivers for severe LN patients could reduce the negative experience,improve the family relationship,and promote the stableness of patients' condition.