A qualitative study on the experience of stigma of family caregivers of children with autism from the perspective of family empowerment

从家庭赋权的角度对自闭症儿童家庭照护者所经历的污名化体验进行定性研究

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Abstract

BACKGROUND: This qualitative study investigates the experiences of stigma among caregivers of children with autism, from the viewpoint of family empowerment. The goal is to offer insights that can inform the development of personalized and effective family intervention strategies. METHODS: We invited fifteen family caregivers of children with autism to participate in semi-structured interviews. After each interview, the dialogue was transcribed verbatim. Subsequently, we analyzed the data according to the principles of thematic analysis. RESULTS: The experiences of caregivers of children with autism can be categorized into four main themes: (1) the challenges faced by family caregivers, (2) the family's coping mechanisms in response to the child's autism, (3) the acceptance and personal growth of caregivers of children with autism, and (4) social interactions from the perspective of family empowerment. CONCLUSIONS: Empowering caregivers to support their physical and mental health generates positive energy, while empathetic understanding offers emotional comfort. It is essential to develop individualized rehabilitation plans through collaborative family-based service mechanisms, provide respite services tailored to family needs, and integrate community resources to improve community engagement. Enhancing social support and increasing public awareness will strengthen the rehabilitation service system. Furthermore, by disseminating information through various channels and coordinating efforts across departments to provide comprehensive care throughout the illness, a family-centered collaborative model can be established, ultimately improving the health of both patients and caregivers. CLINICAL TRIAL NUMBER: Not applicable.

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