淋巴管肌瘤病患者创伤后成长的现状、内涵及促进因素  

The current status, experiences and promoting factors of posttraumatic growth inlymphangioleiomyomatosis patients

作　　者：赵汉青 刘静远[2] 李焰[2] 孙沛 徐凯峰[3] 程重生 Zhao Hanqing;Liu Jingyuan;Li Yan;Sun Pei;Xu Kaifeng;Cheng Chongsheng(Faculty of Psychology,Tsinghua University,Bejing 100084,China;Center for Counselling and Psychological Development,Tsinghua University,Beijing 100084,China;Peking Union Medical CollegeHospital,Beijing100730,China)

机构地区：[1]清华大学心理学系 [2]清华大学学生心理发展指导中心 [3]北京协和医院

出　　处：《叙事医学》2024年第2期96-104,共9页Narrative Medicine

摘　　要：目的分析淋巴管肌瘤病(lymphangioleiomyomatosis,LAM)患者创伤后成长、生命意义感及生命质量的现状及三者之间的关系,探索其创伤后成长的内涵及促进因素。方法2021年10月,通过简体中文版创伤后成长评定量表、生命意义感量表、世界卫生组织生命质量测定量表简表,对北京协和医院呼吸与危重症医学科登记在册的226例LAM患者的创伤后成长、生命意义感及生命质量进行测量,并探究三者间的关系;2021年11月至2022年1月,采用质性研究的方法,探索参与上述研究的患者中筛选出的9例LAM患者创伤后成长的内涵及促进因素。结果LAM患者表现出中等水平的创伤后成长和生命意义感,生命质量水平高于罕见病群体的平均水平;LAM患者的简体中文版创伤后成长评定量表评分、生命意义感量表评分、世界卫生组织生命质量测定量表简表评分呈两两正相关,且生命意义感在创伤后成长和生命质量之间起部分中介作用;LAM患者的创伤后成长表现在人生感悟、与他人的关系、新的可能性和自我转变4个方面,通过调节认知、合理应对、社会支持、贡献他人,可以促进患者的创伤后成长。结论通过促进LAM患者的创伤后成长,有助于改善患者的生命质量。Objective To learn about the status quo of posttraumatic growth(PTG),meaning in life(MIL)and quality of life(QOL)in Lymphangioleiomyomatosis(LAM)patients,analyze the relationship among these three parameters and further examine the experiences and promoting factors of PTG in LAM patients.Method 226 LAM patients,registered in the Department of Pulmonary and Critical Care Medicine of Peking Union Medical College Hospital,participated in the study in October 2021.Chinese-posttraumatic growth inventory,meaning in life questionnaire and World Health Organization quality of life scale-BREF were adopted respectivelyformeasuring PTG,MIL and QOL in LAM patients.And the relationship among patients'PTG,MIL and QOL was examined in SPSS 25.0.Qualitative methods were deployed to explore the experiences and promoting factors of PTG in LAM patients.9 patients with high level of PTG were interviewed during November 2021 to January 2022.Based on the methodology of thematic analysis,generating initial codes,searching for themes,defning and naming themes were conducted.Results The results showed that LAM patients presented middle level of PTG and MIL,and higher level of QOL than the average of patients with rare diseases.PTG,MIL and QOL in LAM patients were positively correlated with each other.And MIL had a significant mediating effect between posttraumatic growth and quality of life.The experiences of patients'PTG included 4 themes of appreciation of life,the relationship with others,new possibilities and self-transformation,under which there were 17 sub-themes.The promoting factors of patients'PTG included 4 themes of cognitive regulation,reasonable coping,social support and contribution for others,under which there were 18 sub-themes.Conclusion Promoting PTG of LAM patients may assist in improving their life quality.

关 键 词：淋巴管肌瘤病 创伤后成长 生命质量 生命意义感 

分 类 号：R47[医药卫生—护理学]