基于Jones多维度概念理论的中青年腹膜透析患者自我病耻感的质性研究
Qualitative research on self-stigma of young and middle-aged peritoneal dialysis patients based on Jones '' multidimensional concept theory
投稿时间:2026-06-05  修订日期:2026-07-09
DOI:
中文关键词:  终末期肾脏病  腹膜透析  中青年  自我病耻感  质性研究
英文关键词:end-stage renal disease  peritoneal dialysis  young and middle-aged  self-stigma  qualitative research
基金项目:
作者单位邮编
牛申豪 太原市中心医院 030009
李鸿毅* 太原市中心医院 030009
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中文摘要:
      【摘要】 目的 深入了解中青年腹膜透析患者透析过程中的病耻感体验及其感受,为制定相应的干预方案提供参考。方法 采用描述性现象学研究方法,对2024年12月至2025年4月太原市某三级甲等医院收治的14例腹膜透析患者进行面对面半结构式访谈,运用colzizzi七步分析法分析资料并提炼主题。 结果 共提炼出3个主题和12个亚主题,分别为:透析经历内化患者的耻辱意识:自我否定与认知偏差、经济压力与家庭角色反转、身体形象改变与自我规避、生理衰弱强化自我无用感;感知的社会歧视加重病耻感:治疗特性与社会隔离的双重枷锁、就业排斥与社会价值否定、疾病标记的社会审判;复杂多样的病耻应对策略:自我归因与自责懊悔、社交回避、自我隐瞒、认知重构与心态调整、感知社会支持。 结论 中青年腹膜透析患者病耻感是自我内化与社会外部歧视共同作用的结果,患者应对方式随病程发展呈现动态变化。临床工作不能仅关注患者躯体症状,更需聚焦患者心理困境,针对内在认知偏差、外在社会隔离、消极应对行为三大痛点实施个体化干预;同时联动亲属及社会各界力量,构建完善的家庭与社会支持体系,消除大众认知偏见,多维度降低患者病耻感水平。 【关键词】 终末期肾脏病;腹膜透析;中青年;自我病耻感;质性研究
英文摘要:
      [ Abstract ] Objective To deeply understand the stigma experience and feelings of young and middle-aged peritoneal dialysis patients during dialysis, and to provide reference for the formulation of corresponding intervention programs. Methods A descriptive phenomenological research method was used to conduct face-to-face semi-structured interviews with 14 peritoneal dialysis patients admitted to a tertiary hospital in Taiyuan from December 2024 to April 2025. The colzizzi seven-step analysis method was used to analyze the data and refine the theme. Results A total of 3 themes and 12 sub-themes were extracted, which were : stigma awareness of patients with dialysis experience internalization : self-denial and cognitive bias, economic pressure and family role reversal, body image change and self-avoidance, physiological weakness and self-uselessness ; perceived social discrimination aggravates stigma : the double shackles of therapeutic characteristics and social isolation, employment exclusion and social value negation, and social trial of disease markers ; complex and diverse stigma coping strategies : self-attribution and self-blame regret,Social avoidance, self-concealment, cognitive reconstruction and mentality adjustment, perceived social support. Conclusion The stigma of young and middle-aged peritoneal dialysis patients is the result of self-internalization and social external discrimination. The coping style of patients shows obvious dynamic changes with the development of the disease. Clinical work should not only pay attention to the physical symptoms of patients, but also focus on the psychological dilemma of patients, and implement individualized intervention for the three pain points of internal cognitive bias, external social isolation and negative coping behavior. At the same time, we should link family members, relatives and friends and all sectors of society to build a perfect family and social support system, eliminate public cognitive bias, and reduce the level of patients '' stigma in two dimensions. [ Keywords ] end-stage renal disease ; peritoneal dialysis ; young and middle-aged ; self-stigma ; qualitative research
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