眼科学报2026，Vol.41Issue(3)：218-227,10.DOI:10.12419/25070902
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
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
陈梦瑶 1段昭妍 1杨盼望 1谢良 2杨志升 2张宇迪1
作者信息
- 1. 北京科技大学文法学院,北京 100083
- 2. 苏州市爱瞳视康公益服务中心,苏州 215155
- 折叠
摘要
Abstract
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.关键词
遗传性视网膜疾病/诊疗历程/心理影响/质性研究Key words
inherited retinal diseases/diagnosis and treatment process/psychological impact/qualitative study分类
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陈梦瑶,段昭妍,杨盼望,谢良,杨志升,张宇迪..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[J].眼科学报,2026,41(3):218-227,10.
