高级别神经胶质瘤病人病耻感的质性研究

Stigma of patients with high-grade glioma:a qualitative study

目的:了解高级别神经胶质瘤病人的病耻感体验。方法:采用目的抽样法,于2021年11月—2022年4月选取西南医科大学附属医院神经外科住院的10例高级别神经胶质瘤病人作为研究对象,采用描述性现象学研究方法对其进行半结构式深度访谈并记录访谈内容,使用Nvivo 12.0软件对访谈结果进行整理,按照Colaizzi现象学分析方法分7步对访谈内容进行分析。结果:共提炼出三大主题。病耻感体验,包括受歧视的经历、焦虑、恐惧;病耻感来源,包括癫痫发作、病人-照顾者二元效应、经济压力;病耻感应对方式,包括寻求帮助、躲避社交、自我否定、益处发现。结论:医护人员和社会公众应加强对高级别神经胶质瘤病人病耻感的关注,并给予心理-社会支持,探索适宜的多元化干预方案,开展多学科团队协作,提高神经胶质瘤病人的生活质量。

Objective:To understand the stigma experience of patients with high-grade glioma.Methods:Purposive sampling method was adopted to select 10 patients with high-grade glioma hospitalized in the Department of Neurosurgery of the Affiliated Hospital of Southwest Medical University from November 2021 to April 2022 as the research objects.Descriptive phenomenological research method was adopted to conduct semi-structured in-depth interviews with the patients and record the interview contents.Nvivo 12.0 software was used to organize the interview results,and the interview contents were analyzed in 7 steps according to Colaizzi phenomenological analysis method.Results:Three themes were extracted.Stigma experiences,including experiences of discrimination,anxiety,and fear;the source of stigma,including the epileptic attack,patient-caregiver binary effect,and economic pressure;stigma coping styles,including help-seeking,social withdrawal,self-denial,and benefit finding.Conclusions:Medical staff and the public should pay more attention to the stigma of high-grade glioma patients and give them psychological-social support,explore appropriate diversified intervention programs,and carry out multidisciplinary team cooperation to improve the quality of life of patients with glioma.