Narratives of family members of Capsi’s autistic patients from the metropolitan region of Rio de Janeiro: participation, protagonism and barriers to care

Abstract

Psychosocial care for parents of substitute services’ patients is one of the main challenges of the Brazilian Psychiatric Reform. The present work is the result of qualitative evaluative research, involving focus groups with family members of autistic children and adolescents treated at Child and Adolescent Psychosocial Care Centers (Capsi) in the Metropolitan Region of Rio de Janeiro. The article analyzes two categories from the narratives provided by family members: their protagonism and participation in the context of Capsi, and the barriers in access and continuity of care. Several family members report participation in different forms
of activism and in the fight for social rights, but point out the need to expand their involvement in the child’s psychosocial treatment. They report positive experiences at the Capsi, but complain about difficulties involving transportation, services opening hours, frequency of therapies, and the precariousness of the physical space. A closer relationship between the Capsi and family members - through the valuing of their speeches, the care of their suffering and the encouragement and respect for their self-organization initiatives - can be strategic for the preservation and consolidation of the Brazilian Psychiatric.