失代偿期肝硬化患者及其配偶回归家庭二元疾病管理体验的质性研究

A qualitative research on dyadic experience of disease management in patients with decompensated cirrhosis and their spouses returning to the family

目的了解失代偿期肝硬化患者及其配偶回归家庭二元疾病管理的真实体验,为失代偿期肝硬化患者及其配偶制订针对性临床干预策略提供参考依据。方法采用目的抽样法,选取2022年2—4月于郑州大学第一附属医院感染科复查的13对失代偿期肝硬化患者及其配偶,运用现象学研究法,进行面对面半结构深度访谈,采用Colaizzi 7步法对资料进行整理分析。结果基于二元疾病管理理论归纳出失代偿期肝硬化患者及其配偶回归家庭二元疾病管理3个主题8个亚主题:二元负性疾病感知(病情认知偏差;缺乏并发症认知)、二元消极家庭管理(自我价值感低,抵触管理;管理依从性差;经济压力大,态度消极)、二元健康有待改善(负性情绪主导;病耻感,自我封闭;沟通障碍,亲密关系受损)。结论失代偿期肝硬化患者及其配偶回归家庭后在疾病感知、依从性、管理态度、管理行为等方面存在消极和抵触心理,医护人员应针对回归家庭的失代偿期肝硬化患者及其配偶加强疾病教育,引导角色转变,给予针对性积极心理干预,提供多维度社会支持,以改善负性情绪,减轻病耻感,提高二元健康。

Objective To explore the real experience of decompensated cirrhosis patients and their spouses returning to family dual disease management and to provide a reference for the targeted intervention strategies.Methods Totally 13 decompensated cirrhosis patients and their spouses admitted in Infectious Disease Department,the First Affiliated Hospital of Zhengzhou University from February 2022 to April 2022 were recruited for semi-structured interviews.Colaizzi 7-step analysis was used to summarize and extract the themes.Results The final analysis yielded a total of 8 generic categories belonging to 3 categories based on the dyadic illness management theory.These were negative disease perception including disease cognitive bias,lack of complication awareness,negative family management including low self-worth,conflict management,poor management compliance,economic pressure,passive attitude,dyadic health needs to be improved including negative emotional dominance,self-perceived discrimination,communication disorders,intimacy decrease.Conclusions Decompensated cirrhosis patients and their spouses have negative and resistant psychology in disease perception,management compliance,management attitude,behavior,and so on,clinical medical staff should be aimed at decompensated cirrhosis patients and their spouses on the health education to strengthen disease,guiding role transformation,gives targeted positive psychological intervention,to provide multi-dimensional social support,to improve the negative mood,reduce stigma and improve binary health.