The continuity of care of children and adolescents with myelomeningocele: a descriptive study

Abstract

Problem: the complexity of care to children and adolescents with myelomeningocele, and the need for continuity in the home, represents a challenge for the caregiver. Aim: to analyze the continuity of care at home for children and adolescents with myelomeningocele. Method: a descriptive exploratory study using a qualitative methodology and theoretical and methodological framework of dialectics. Data were collected from 16 families, made up of children and adolescents with myelomeningocele and their mothers, through interviews and observation from May to August 2015. The observation took place during three home visits to each family. The interview was conducted during the first home visit. The data were submitted for thematic content analysis. Preliminary results: families have low income and face social challenges related to accessibility and to the acquisition of materials for care.