Impacts of recurrent partial hospitalization from the perspective of children and adolescents with mucopolysaccharidoses in a pediatric hospital¹

Abstract

The present study had children and adolescents as participants, between seven and twelve years old, who live with Mucopolysaccharidoses. The main objective was to understand the meaning of weekly or fortnightly hospitalization at the day hospital of a Pediatric Hospital in Rio de Janeiro from the perspective of children and adolescents with Mucopolysaccharidosis. The specific objectives were to understand how children comprehend the disease process and to discuss possible interventions of Occupational Therapy in the day hospital ambient. The research has a qualitative character and for that, the observation, interview, and the construction were mediated by productions, using the drawing or the play as relevant ways of accessing the children-juvenile contents. From the interviews and other data, an interpretative analysis was performed that resulted in the following thematic nuclei: the reorganization of the daily life of the family, the disease’s consequences, the local support networks, and the influence of humanization projects and Occupational Therapy in the hospitalization process. In view of the results, it is pointed out as a conclusion that when we listening to children, it is possible to understand the dimension that the disease has on their lives and as health professionals can offer comprehensive care in the face of hospitalizations. It is believed that Occupational Therapy has much to contribute to this space while it looks at daily life and acts on human doing.

Keywords:
Hospitalization; Day Care; Medical; Child; Adolescent