ABSTRACT
Objective:
to understand the family experience of children and adolescents with myelomeningocele by the discovery of chronic illness and their daily life in the realization of needed care to these people.
Method:
qualitative study, developed from October 2013 to February 2014, with family, in a pediatric hospital in Fortaleza. Data were collected through interviews and checked by analysis thematic category.
Results:
it was found that the diagnosis after the birth of the child caused fear and anguish to the families in front of the unknown and the unexpected and that over the years they started to deal with many challenges conducting the daily care due to the disease sequelae.
Conclusion:
nursing plays an important role in the lives of families, children and adolescents, through emotional support, guidelines and care inserted in the health care network.
Key words:
Persons with Disabilities; Chronic Disease; Child; Adolescent; Caregivers