No matter how I think, it already hurts

Abstract

This study used mixed-methods design to explore internalized self-stigma among family caregivers (ISFC) of people with intellectual disability (ID) in China, where face culture and collective emotions are emphasized. A total of 120 primary caregivers of people with ID were assessed for ISFC, face concern and psychological distress at the survey phase. Of these caregivers, 10 participated in sequential interviews to provide elaboration for quantitative results. The results highlighted the role of stigmatized feelings instead of cognitive thoughts in hurting caregivers in the Chinese context. Caregivers with higher face concern were more likely to internalize feelings of shame, self-blame and powerlessness and suffered poorer mental health. Low-socioeconomic status group and onset-before-birth group were particularly vulnerable to stigma that require more attention in future studies. Feelings of being marginalized within the family and shame may be more face culture-related concern. Strategies (i.e. withdrawal, compensation, self-compassion and multiple identities) and recommendations for stigma reduction were discussed.