The Reality of Children and Adolescents with Meningomyelocele and Their Families, in the City of Belo Horizonte and Its Metropolitan Area, Brazil

Abstract

Meningomyelocele is a congenital defect involving the central nervous system which is one of the most common among those compatible with life. Children affected by this condition present neurological, orthopedic, renal and urogenital complications, needing lifelong healthcare provisions. The aim of this study was to analyze the reality experienced by children and adolescents with meningomyelocele and their families in the city of Belo Horizonte and its metropolitan area, Brazil. A descriptive and exploratory study was conducted via three home visits and a scripted interview with 16 children and adolescents with meningomyelocele and their families. It was observed that mean age of children and adolescents was 12 years old, most of them did not walk (n = 10), and depended on wheel chairs and parental care. Mothers represented the main caregivers and most (n = 12) had to leave their formal work outside of the home, compromising family income. It concluded that the families had socioeconomic levels aggravated by difficulties in purchasing materials needed for their children’s care. Some social challenges included barriers to education and the acquisition of medications and materials, demonstrating the need for planning public policies aimed at integrating different health services.