Experiences in the therapeutic itineraries of mothers of children with intellectual disabilities

Mércia Mascarenhas Fernandes Cerqueira Rafanielly de Oliveira Alves Maria Geralda Gomes Aguiar About the authors

Abstract

The scope of this study is to describe the experiences of mothers of children with intellectual disabilities who have been treated in a specialized institution in Feira de Santana, State of Bahia, during their therapeutic itineraries. The study adopted a qualitative approach and was conducted by means of semi-structured interviews. The results revealed that the discovery that their child has an intellectual disability is accepted by their mothers with emotions of shock, denial, anger, negotiation, depression and subsequent acceptance. The difficulties in therapeutic itineraries begin after the moment the child is diagnosed as having an intellectual disability, due to the lack of experience of health professionals in communicating the fact, which leads the mothers to search for other health services. Despite access to healthcare being one of the principles of the Unified Health System (SUS), therapeutic itineraries are fraught with difficulties at a geographical, economic and functional level. Intellectual disability is a health issue demanding constant care, and its impacts have repercussions in the family dynamics, identities and roles, requiring comprehensive attention to the children and their caretakers, especially in the type of support such that they may maintain their protective roles.

Intellectual disability; Family; Access to healthcare services

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