遗传性视网膜疾病患者家庭的诊疗心理"画像":基于患者和家属的深度访谈剖析OA
A psychosocial portrait of diagnosis and treatment in families of patients with inherited retinal diseases:an analysis based on in-depth interviews with patients and their family members
目的:遗传性视网膜疾病不仅给患者带来生理影响,还给患者家庭带来心理冲击.本研究旨在探究诊疗历程对遗传性视网膜疾病患者家庭心理层面的影响,为制定针对性的心理支持策略提供依据.方法:采用目的抽样法,对 9 例遗传性视网膜疾病患者、11 例患者家属进行半结构化访谈,采用 Colaizzi 7步分析法分析原始资料并提炼主题.结果:共提炼 2 个主题,分别为遗传性视网膜疾病患者的诊疗历程特点、诊疗历程对患者家庭的心理影响.其中,诊疗历程特点包括诊断一波三折(早期症状不典型、误诊现象屡见不鲜、确诊过程漫长复杂),治疗举步维艰(缺乏特效治疗手段、康复与治疗费用高、临床研究进展缓慢);诊疗历程对患者家庭的心理影响包括心理应激与调适(确诊引发的心理震荡、长期压力下的情绪波动、心理调适的努力与探索),对家庭关系的冲击与重塑(紧张与矛盾、紧密与支持)以及社会压力下的心理负担与应对(病耻隐匿心理、积极帮助其他患者家庭).结论:遗传性视网膜疾病患者家庭在诊疗过程中面临诸多挑战,心态复杂多变.医护人员应对患者家庭提供全面、个性化的心理支持.
Objective:Inherited retinal diseases not only impose physical burdens on patients but also inflict psychological distress on their families.This study aims to investigate how the diagnosis and treatment process affects the psychological well-being of families of patients with inherited retinal diseases,thereby providing a foundation for developing targeted psychological support strategies.Methods:The purposive sampling approach was used to conduct semi-structured interviews with 9 patients with inherited retinal diseases and 11 of their family members.The Colaizzi 7-step analysis method was used to analyze the raw data and identify key themes.Results:A total of 2 themes were extracted:the characteristics of the diagnosis and treatment process for patients with inherited retinal diseases,and the psychological impact of this process on the patients'families.Regarding the characteristics of the diagnosis and treatment process,it involves a diagnostic journey(characterized by atypical early symptoms,frequent misdiagnosis,and a long and complex diagnosis process)and treatment challenges(including a lack of specific and effective treatment methods,high rehabilitation and treatment costs,and slow progress in clinical research).The psychological impact on the patients'families encompasses psychological stress and adjustment(such as the psychological shock caused by the diagnosis,emotional fluctuations under long-term pressure,and efforts and exploration in psychological adjustment),the influence and reshaping of family relationships(including tension and conflicts as well as closeness and support),and the psychological burden and coping strategies under social pressure(such as stigma and concealment psychology,and actively helping other patients'families).Conclusions:Families of patients with inherited retinal diseases encounter numerous challenges during the diagnosis and treatment process,and their psychological states are complex and dynamic.Medical staff should offer comprehensive and personalized psychological support to assist these families.
陈梦瑶;段昭妍;杨盼望;谢良;杨志升;张宇迪
北京科技大学文法学院,北京 100083北京科技大学文法学院,北京 100083北京科技大学文法学院,北京 100083苏州市爱瞳视康公益服务中心,苏州 215155苏州市爱瞳视康公益服务中心,苏州 215155北京科技大学文法学院,北京 100083
医药卫生
遗传性视网膜疾病诊疗历程心理影响质性研究
inherited retinal diseasesdiagnosis and treatment processpsychological impactqualitative study
《眼科学报》 2026 (3)
218-227,10
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