A (Des)continuidade do cuidado de crianças e adolescentes com mielomeningocele no domicílio

Abstract

This study aimed to analyze the daily lives of children and adolescents with myelomeningocele and his primary caregiver at home to provide care. We conducted a descriptive exploratory study with qualitative methodology and theoretical framework of dialectics. The setting was the home of children and adolescents, located in Belo Horizonte / Minas Gerais and the metropolitan area. Participants were 16 mothers and 16 children and adolescents with milomeningocele (MMC) that carried out the rehabilitation program at Sarah Network, Belo Horizonte unit, outpatient sector in the last five years; with five to 18 years; and residents in Belo Horizonte or 60 km away. Data were collected through interviews with semi-structured and observation. Three home visits were carried out, with an interview on the first visit. Transcripts of the interviews and therecords of the observations made in the field diary were analyzed using thematic content analysis technique. From the analysis, four empirical categories: "The care routine at home: the reality of caring mothers", "Care everyday at home: the reality of children and adolescents with myelomeningocele," "The cost of care for the family" and "The social support network." The first category showed changes in the daily lives of mothers from the birth of the child with feelings of fear and insecurity in the care of child. Maternal creativity favored adaptations to a new wayof working and the realization of care, which allowed the incorporation and naturalization of care over the years. In the second category, it was found that the children daily and adolescents with MMC is marked by difficulties and limitations. The school was the main place of socialization still characterized by scarce social relations. families of programs are restricted to visits to doctor, churches and visiting family. The desire for independence was mentioned by the mothers and their children, however, caught up contradiction between discourse and practice,as participants found it difficult to build independence and autonomy. In the third category, it was found that the cost of care at home and the family budget may hinder and continuity of care. Families have low income and 12 receive the benefit of the government. The home care require the purchase of materials, being observed difficulty of acquisition by public health services. Social support has been worked in the fourth empirical category, showing that mothers support network is formed especially by consanguineous female relatives, with the financial supportprovided by family members promptly. It was concluded that there is discontinuity of care to children and adolescents and their caregivers mothers. It is necessary, therefore, endorse the expansion of cross-sectoral policies that allow them to extrapolate the walls of homes, ensuring autonomy and opportunities to participate according to their capabilities.