Mapping the intricacies of care networks for persons with disabilities, from the perspectives of users-citizens-guides

• Main Authors: Juliana Sampaio, Daniella de Souza Barbosa, Luciano Bezerra Gomes, Daniele Alves Peixoto, Tarcísio Almeida Menezes, Hariel Hegel Lins Zózimo, Maria Fernanda de Britto Lyra
• Format: Article
• Language: English
• Published: Instituto de Salud Colectiva, Universidad Nacional de Lanús 2021-06-01
• Series: Salud Colectiva
• Subjects: Services for Persons with Disabilities; Health Services Needs and Demand; Healthcare Models; Family Relations; Qualitative Research; Brazil
• Online Access: http://revistas.unla.edu.ar/saludcolectiva/article/view/3334

This article presents an analysis of the production of care networks for persons with disabilities in the state of Paraíba, Brazil. We employed a qualitative methodology with a cartographic approach, involving the participation of four users-citizens-guides. Weekly virtual meetings were held throughout the second half of 2020, in which we were able to collect, systematize, and theorize on four issues: 1) guilt and (non) life expectancy on the part of persons with disabilities; 2) the place of disability in family dynamics; 3) the production of specific core relational dependency networks; and 4) the public vs. private care offerings for persons with disabilities. Based on these findings, we were able to lend visibility to and explicitly affirm the ways in which these user-citizens participate in the complex process of care building for persons with disabilities and their families.