青年癫痫患者主要照顾者的病耻感质性研究

Stigma of Main Caregivers of Young Patients with Epilepsy

目的:了解青年癫痫患者主要照顾者的病耻感体验,为制定针对性干预措施提供参考。方法:选取2022年3—8月郑州市第二人民医院陪同、照护青年癫痫患者的主要照顾者作为研究对象。采用质性研究方法,采用半结构式访谈收集研究资料,采用主题分析法分析资料。结果:青年癫痫患者的主要照顾者主要有无助、忧虑、惧怕、内疚、被歧视等体验,并有隐瞒患者疾病,自我调节心理状态等行为,并认为社会公众对癫痫认知缺乏或失当是引起自身病耻感的原因之一。结论:青年癫痫患者主要照顾者的病耻感体验较为复杂,医护人员应给予必要干预。

Objective:To know the stigma experience of the main caregivers of young patients with epilepsy,and to provide reference for formulating targeted intervention measures.Methods:The main caregivers who accompanied and cared for young patients with epilepsy from March 2022 to August 2022 in the hospital were selected as the research objects.Qualitative research methods were used,semi-structured interviews were used to collect research data.Thematic analysis was used to analyze the data.Results:The main caregivers of young patients with epilepsy mainly have the experiences,such as helplessness,anxiety,fear,guilt and discrimination,etc.;and conduct behaviors,such as concealing the patient’s disease,self-regulation of psychological state;and believe that the lack or improper cognition of the public about epilepsy is the cause of their own disease shame.Conclusion:The main caregivers of young patients with epilepsy have complex experience of disease and shame,and medical staff should provide necessary support.