Managing stigma and reconstructing caregiver identity: a qualitative descriptive study of family caregivers of children with cerebral palsy in China.

PURPOSE: Family caregivers of children with cerebral palsy may encounter stigma alongside substantial caregiving demands. However, less is known about how they experience and manage stigma in everyday social encounters and reconstruct a valued caregiver identity. This study aimed to explore these experiences among family caregivers of children with cerebral palsy in China.

METHODS

A qualitative descriptive design was used. Twenty family caregivers were recruited from a tertiary hospital in China using purposive sampling. Data were collected through semi-structured, one-to-one interviews and analysed using inductive content analysis.

RESULTS

Twenty family caregivers participated in the study. Analysis generated four themes: (1) becoming a caregiver: disrupted expectations and expanded family roles; (2) living under the gaze: stigma and social judgment in public and family encounters; (3) managing stigma in everyday interactions: concealment, disclosure, and resistance; and (4) rebuilding a valued caregiver identity through responsibility, support, and meaning-making. Caregivers experienced public/enacted stigma, stigma by association, anticipated stigma and, in some accounts, internalized affiliate stigma. They used context-dependent strategies to manage stigma, while continued caregiving, children's small gains, and supportive relationships helped sustain a valued caregiver identity despite uncertainty about the future.

CONCLUSION

Stigma-related experiences extended beyond internalized affiliate stigma and were embedded in everyday social relationships. Family-centered, stigma-sensitive care should address stigma-related challenges across family, community, and service contexts while strengthening support that affirms caregivers' value and identity.