“人生进程破坏”理论视角下改善癫痫儿童困境的思考  

Reflection on improving the dilemma of children with epilepsy from the perspective of“biographical disruption”theory

作　　者：凌慧 周进芳 LING Hui;ZHOU Jinfang(Department of Neurology,Children’s Hospital of Nanjing Medical University,Nanjing 210008,China)

机构地区：[1]南京医科大学附属儿童医院神经内科,江苏南京210008

出　　处：《中国医学伦理学》2024年第7期753-758,共6页Chinese Medical Ethics

摘　　要：“人生进程破坏”理论旨在解释人类发展过程中的危机和冲突,并探索如何恢复或重新建立个人的身份和价值观。从“人生进程破坏”理论视角分析了癫痫患儿身心健康破坏、认知破坏、社会关系破坏以及家庭生活破坏四个方面的困境及原因,并在此基础上提出如下提升癫痫患儿生存质量的建议:调整生活习惯,提高治疗依从性;制订早期康复训练计划,发展语言和思维能力;理解并关心患儿心理状态,正确培养其自我价值感;提供个性化教育方案,丰富癫痫患儿业余生活;提供专业化心理辅导,加强社会各界的理解与支持;成立自我认知小组,增强患儿疾病掌控感;改变对癫痫的误解和偏见,消除对癫痫的污名化;鼓励患儿积极参与社会活动,提供安全积极的社交环境;鼓励社会工作者积极介入,恢复并增强家庭凝聚力;积极寻求社会支持与资源,完善癫痫患儿社会保障制度。The“biographical disruption”theory aims at explain the crises and conflicts in human development,as well as explore how to restore or rebuild an individual’s identity and values.From the perspective of the“biographical disruption”theory,this paper analyzed the dilemmas and causes of children with epilepsy from four aspects,including disruption of physical and mental health,cognitive,social relationships,and family life.Based on these,the following suggestions were proposed to enhance the quality of life of children with epilepsy,including adjusting living habits and improving treatment compliance;formulating early rehabilitation training plans to develop language and thinking abilities;understanding and caring about their psychological state and correctly cultivating their sense of self-worth;providing personalized education programs and enhancing their leisure time;offering professional psychological counseling and strengthening the understanding and support of all sectors;establishing self-cognition groups and empowering children with a sense of control over the disease;changing the misunderstandings and prejudices about epilepsy;removing stigmatization of epilepsy patients;encouraging children to actively participate in social activities and providing a safe and positive social environment;encouraging social workers to actively intervene to restore and enhance family cohesion;actively seeking social support and resources and improving their social security system.

关 键 词：“人生进程破坏”理论 癫痫儿童 身心健康 认知 社会关系 家庭生活 

分 类 号：R-052[医药卫生]