A qualitative study on the treatment decision-making experience of caregivers of children with epilepsy
儿童癫痫照护者治疗决策体验的质性研究

摘要

目的 本研究旨在探讨癫痫儿童照护者在治疗决策过程中的体验，通过质性研究方法深入分析其心理、社会及文化背景对决策的影响。方法 采用半结构化质性访谈的方式，访谈了60名参与治疗决策的儿童癫痫患者照护者。访谈内容包括照护者的情感历程、治疗决策中的关键考虑因素、面临的挑战及其情绪体验。使用标准化量表评估治疗决策满意度、焦虑感以及沟通质量。结果 研究发现，照护者在治疗决策中受家庭经济状况、医生建议、信息获取渠道和情绪焦虑等因素的显著影响。大多数照护者对治疗选择表示满意（70%），但60%的照护者在决策过程中表现出不同程度的焦虑。沟通质量对决策满意度有较大影响。结论 照护者的治疗决策受到多方面因素的影响，尤其是情绪支持和信息沟通。

Abstract

Objective This study aims to explore the treatment decision-making experience of caregivers of children with epilepsy and to deeply analyze the influence of their psychological, social and cultural backgrounds on the decision-making process through qualitative research methods.
Methods Semi-structured qualitative interviews were conducted with 60 caregivers of children with epilepsy who were involved in treatment decision-making. The interview content included the emotional journey of the caregivers, key considerations in treatment decision-making, challenges faced, and their emotional experiences. Standardized scales were used to assess treatment decision satisfaction, anxiety levels, and communication quality.
Results The study found that caregivers' treatment decisions were significantly influenced by factors such as family economic status, doctor's advice, information acquisition channels, and emotional anxiety. Most caregivers were satisfied with their treatment choices (70%), but 60% of caregivers showed varying degrees of anxiety during the decision-making process. Communication quality had a significant impact on decision satisfaction.
Conclusion   Caregivers' treatment decisions are influenced by multiple factors, especially emotional support and information communication.