Vinte anos de atendimento educacional hospitalar e domiciliar no Rio Grande do Norte: perspectivas históricas e autobiográficas

Abstract

The chronic illness phenomenon in childhood appears as something apparently unexpected, which causes ruptures and changes in children daily life. Recurrent hospitalizations, pain, fear of dying, physical and psychological changes and school withdrawal imply a new organization. The research carried out for this Master thesis aims to investigate, based on legal documents, twenty years of home and hospital education attendance (HHEA) and, based on autobiographical narratives of young people who experienced chronic illness in childhood, the processes of continuity in schooling through HHEA. A twenty-year-pathway of HHEA in Rio Grande do Norte and the perception of two young people concerning their schooling processes through HHEA during childhood were the objects of this study. We place the study within the (auto) biographical research in education, cultural psychology which adopts a narrativist perspective and the studies about the education attendance for students in health treatment. Two young people with chronic illnesses in childhood have participated of this study: Jhons since the age of three and Ingrid since the age of eight, today 22 and 29 years old, respectively. The corpus of research is constituted by primary autobiographical sources: transcription of two narrative interviews and two letters written by participants for children with chronic illnesses; and secondary autobiographical sources: publications on Facebook, newspapers and TVs, researcher field diary, and documentary and legal sources which support the historic perspective of HHEA in Rio Grande do Norte. The analysis reveals young people describes the experience with chronic illness in childhood as a difficult moment. They also report the recognition of the HHEA services for the continuity of schooling and their well-being during illness as facilitators of the processes of insertion and reintegration back into regular school, enabling them to become protagonists in the face of chronic illness in childhood and throughout life.