Giselle Lima de Freitas1, Roseni Rosângela de Sena2, Josana Cristina Faleiros E Silva3, Fabiana Faleiros Santana Castro4. 1. Rede SARAH de Hospitais de Reabilitação. Belo Horizonte, Minas Gerais, Brasil. 2. Universidade Federal de Minas Gerais (UFMG), Departamento Enfermagem Materno Infantil e Saúde Pública. Belo Horizonte, Minas Gerais, Brasil. 3. Universidade de São Paulo (USP), Escola de Enfermagem, Ribeirão Preto, São Paulo, Brasil. 4. Universidade de São Paulo (USP), Escola de Enfermagem, Departamento de Enfermagem Geral e Especializada, Ribeirão Preto, São Paulo, Brasil.
Abstract
OBJECTIVE: To analyze the daily routine of mothers-caregivers of children and adolescents with myelomeningocele at home. METHOD: Descriptive, exploratory, qualitative research. Data were collected with 16 mothers of children and adolescents with myelomeningocele by means of interviews and observation from May to August 2015, in municipalities of Minas Gerais, Brazil. The data were submitted to qualitative analysis. RESULTS: The daily care routine of the mothers at home revealed two empirical categories: a) the impact of the birth on naturalization of care, and (b) changes in the routine of the mothers and women. The daily lives of these mothers is marked by caring that restricts their possibilities and activities to within the walls of their homes, although the mothers desire the independence of their children. CONCLUSION: The emotional, economic, and social transformations, and the difficulties of these mothers to ensure the continuity of care highlight the importance of inclusive public policies, and the importance of health workers in the rehabilitation of children and adolescents with myelomeningocele and their families.
OBJECTIVE: To analyze the daily routine of mothers-caregivers of children and adolescents with myelomeningocele at home. METHOD: Descriptive, exploratory, qualitative research. Data were collected with 16 mothers of children and adolescents with myelomeningocele by means of interviews and observation from May to August 2015, in municipalities of Minas Gerais, Brazil. The data were submitted to qualitative analysis. RESULTS: The daily care routine of the mothers at home revealed two empirical categories: a) the impact of the birth on naturalization of care, and (b) changes in the routine of the mothers and women. The daily lives of these mothers is marked by caring that restricts their possibilities and activities to within the walls of their homes, although the mothers desire the independence of their children. CONCLUSION: The emotional, economic, and social transformations, and the difficulties of these mothers to ensure the continuity of care highlight the importance of inclusive public policies, and the importance of health workers in the rehabilitation of children and adolescents with myelomeningocele and their families.