Fan Xing, Ko Kyung Soon
College of Preschool Education, Capital Normal University, Beijing, China.
Dept. Creative Arts Psychotherapy, Jeonju University, Jeonju, Republic of Korea.
Front Psychiatry. 2025 Jun 3;16:1514948. doi: 10.3389/fpsyt.2025.1514948. eCollection 2025.
This study explored the parenting experiences of caregivers that are raising children with autism spectrum disorder in China by focusing on their emotional experiences as well as perceived roles and responsibilities.
The research questions were (1) What are Chinese caregivers' emotional experiences with their child with autism spectrum disorder? and (2) How do Chinese caregivers perceive their roles and responsibilities related to their children with autism spectrum disorder?
Qualitative data were gathered through individual interviews with caregivers of children with autism spectrum disorder. The MAXQDA software program was used for data analysis.
The data analysis resulted in four final themes: (a) Unable to abandon the hope that the child will become "ordinary," (b) The child's development goes against the expectations of their caregivers, (c) Emotional phases in the caregiver's responses to diagnosis, and (d) Enduring the life that was given.
This study sheds light on the experience of Chinese parents raising children with autism spectrum disorder in a culture that might perceive this disorder differently than the West. This study reflects the authentic parenting dilemmas and intense emotional fluctuations experienced by Chinese caregivers of children with autism spectrum disorder. Understanding these experiences will stimulate the readers' humanistic thinking, expand their care and compassion toward this group, and benefit society. By exploring the emotional struggles and parenting challenges faced by these parents, the goal is to offer them more tangible understanding and social support.
本研究聚焦于中国自闭症谱系障碍患儿照料者的情感体验以及他们所感知到的角色和责任，探讨了他们养育自闭症谱系障碍患儿的经历。
研究问题为：（1）中国照料者与自闭症谱系障碍患儿相处时的情感体验是怎样的？（2）中国照料者如何看待自己与自闭症谱系障碍患儿相关的角色和责任？
通过对自闭症谱系障碍患儿照料者进行个体访谈收集定性数据。使用MAXQDA软件程序进行数据分析。
数据分析得出四个最终主题：（a）无法放弃孩子会变得“正常”的希望，（b）孩子的发展与照料者的期望相悖，（c）照料者对诊断结果的情感阶段，（d）承受既定的生活。
本研究揭示了中国父母在一种对自闭症谱系障碍的认知可能与西方不同的文化中养育自闭症谱系障碍患儿的经历。本研究反映了中国自闭症谱系障碍患儿照料者真实的育儿困境和强烈的情绪波动。理解这些经历将激发读者的人文思考，扩大他们对这一群体的关怀和同情，并造福社会。通过探究这些父母所面临的情感挣扎和育儿挑战，目标是给予他们更切实的理解和社会支持。
