[Raising children with mental disabilities: mothers' narratives]

Olga Maria Bastos1, Suely Ferreira Deslandes

  • 1Instituto Fernandes Figueira, Fundação Oswaldo Cruz, Rio de Janeiro, Brasil. olgab@iff.fiocruz.br

Cadernos De Saude Publica
|September 25, 2008
PubMed

Technical advances in neonatology have increased the life expectancy of children with serious health problems. Many of these children experience developmental delay (mental disability) and require special care. The family must adapt to better provide for the child's needs. This study aimed to identify mothers' reactions and the obstacles they face to obtain what they consider the best treatment for their children. The study methodology was based on analysis of the mothers' narratives, drawing on medical anthropology and linguistics. The most typical plots in the narratives showed the impact of the diagnosis and the search for means to adapt to the child's care, as well as the difficulties encountered in the public health system to obtain what the mothers considered adequate care. The value ascribed to characters in the support network showed the importance of such support in these situations.

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