The lived experiences of stigma among stroke survivors in a peer group.

Abstract

This qualitative study explored how participation in a peer support group influences the internalization of stigma, stigma management, and social identity among people with brain injury. The sample included seven members of <i>Amigos de la Esperanza</i>, a peer group for stroke survivors in Chile. Data were collected through two focus groups and seven in-depth interviews exploring experiences of stigma and group participation. Transcripts were analyzed using thematic analysis. Participants described experiencing public stigma through misinformation, negative labels, social distancing, and patronizing attitudes. These interactions contributed to self-stigma, shaped by negative self-perceptions, self-criticism, and feelings of sadness, shame, anger, and guilt. Participation in the group helped counteract negative effects of stigma by fostering positive self-perception, emotional well-being and a more compassionate inner dialogue, enabling a positive reconstruction of identity beyond illness. The internalization of stigma after brain injury is not solely an individual experience but develops within social interactions. Peer groups may function as collective spaces for managing stigma and promoting identity reconstruction, offering long-term, low-cost benefits beyond clinical care. Implementing these community-based interventions in Chile and Latin America can improve rehabilitation outcomes and social reintegration for people with brain injury.