Narratives of the experience: to study and to live with chronic disease in childhood.
Narratives of experience. Educational and hospital attendance at home. Childhoodwith chronic disease. Biographical (self) research in education. Young.
The main objective of the dissertation was to investigate the experiences of childhood chronic illness and the processes of studying and living with a chronic illness. We take as object of study the experience of two (2) young people with chronic illness in childhood and the processes of schooling guaranteed through educational and hospital home care (AEHD). In our research we adopted the epistemological principles of (self) biographical research in education. We are also located in cultural psychology that adopts a narrativist perspective, in childhood studies and chronic illness, whose foundations contribute in the reflection of the child in illness and in the theories on educational attendance to students in health treatment. Two young children chronically ill in childhood, three-year-old Jhons and Ingrid with 8 (eight) years of age, are now 22 and 29 years old, respectively, who received AED during childhood in the Child Support House with Câncer Durval Paiva. The corpus of the research is constituted by primary sources: transcription of two narrative interviews and two letters for the youngsters for children with chronic illness, and secondary sources: publications in Facebook, newspapers, TVs, the researcher's collection and field diary notes. The analysis reveals the recognition of the young person about subjective experience with chronic illness in childhood, the recognition of AED as a guarantee of continuity of schooling promoting child welfare, school as a place of difficulty for insertion and reintegration of the child after illness, and the possibility of being protagonist in the face of chronic illness in childhood.