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Escola Anna Nery

versão impressa ISSN 1414-8145versão On-line ISSN 2177-9465


FIGUEIREDO, Sarah Vieira et al. Families' knowledge about children and adolescents with neural malformation about their rights in health. Esc. Anna Nery [online]. 2015, vol.19, n.4, pp.671-678. ISSN 2177-9465.


This study aimed to understand the information quality offered to the families of children and adolescents with myelomeningocele about their rights in health and identify how has been occurred the process of guidance on public health policies.


Qualitative research conducted in a pediatric referral hospital in Ceará. Fifteen families participated in a semi-structured interview, developed from September 2013 to February 2014. The data were submitted to thematic categorical analysis.


Families had insufficient information about the rights of their children, aspect that is related to the gaps in the orientation transmitted by health professionals and results in economic difficulties due to the high costs with the necessary supplies in day to day.


The study disclosed the need to expand the training of professionals, improving their skills for providing assistance to these families, contributing with information on its rights and autonomy.

Palavras-chave : Disabled Persons; Chronic Disease; Child Advocacy; Health Public Policy; Meningomyelocele.

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