Influência dos fatores ambientais nas atividades e participação social de crianças e jovens com Distrofia Muscular de Duchenne

Abstract

Duchenne Muscular Dystrophy (DMD) is a hereditary X-linked recessive disease characterized by progressive muscle weakness and irreversible degeneration of muscle fibers. A cross-sectional qualitative descriptive nature case series study was carried out to investigate the influence of environmental factors on the activities and social participation of children and adolescents with DMD. The sample consisted of four individuals with DMD, and household surveys were carried out using questionnaires based on the International Classification of Functioning, Disability and Health (CIF), structured script and the Egen Klassifikation (EK) scale. The study demonstrated that half of the participants did not present any significant functional impairment and had better results in performing general tasks, self-care and mobility. On the other hand, the other half had moderate and severe impairment, respectively, with poorer results in the execution of activities. Those related to mobility were the most affected, followed by self-care and general tasks. Regarding social participation, the severity of the disease does not seem to interfere with social interaction, onceit was more influenced by personal factors. The study showed that social activities and participation suffer greater influences from clinical conditions and personal factors than from environmental factors.