视障儿童家庭困境的解释现象学分析

An Interpretative Phenomenological Analysis of the Family Plight of Visually Impaired Children

本研究以母亲的视角探究视障儿童家庭的独特经验。对5名视障儿童母亲进行半结构化访谈,运用解释现象学方法分析访谈文本。结果显示家庭在经历儿童视障这一事件后,会面临以下困境:一是现实挑战,包括经济负担、曲折寻医、艰难求学、漫漫养育、社会污名;二是家庭震荡,包括离婚危机、家庭冲突、异地分居、二胎抉择;三是情绪压力,包括震惊愤怒、绝望无助、后悔愧疚、无价值感、迷茫担忧;四是支持匮乏,包括政策支持不足、资源分配不均、特教发展滞后。视障儿童家庭面临现实需求和心理压力,可以从生态系统理论视角给予该群体更多关注与支持。

The study explores the unique experience of families with visually impaired children from the perspective of mothers.Qualitative Research Method was used to conduct semi-structured interviews with mothers of 5 visually impaired children,and Interpretive Phenomenological Analysis was used to analyze the interview texts.The results indicated that families will face the following plight after experiencing the event:The first is realistic challenges,including financial burden,tortuous search for medical care,difficult schooling,long parenting,social stigma;the second is family shock,including divorce crisis,family conflict,living in different places,second-child choice;the third is emotional stress,including shock and rage,hopelessness,regret and guilt,sense of worthlessness,confusion and worry;the fourth is lack of support,including insufficient policy support,uneven distribution of resources,lagging development of special education.Families with visually impaired children are facing with realistic demands and psychological pressures,and more attention and support should be given to this group from the perspective of Ecological Systems theory.