Terapia ocupacional e cuidados paliativos na atrofia muscular espinhal tipo 1: estudo de caso

Spinal Muscular Atrophy (SMA) type 1 is a genetic disease that causes severe motor and respiratory impairments, and starts around 6 months of age. This study aimed to analyze occupational therapy (OT) interventions with a child with SMA, from the perspective of palliative care, and to understand the mother's perception of care in OT. This is a single case study of a child with SMA type 1, who experienced seven years of hospitalization and was assisted by the OT. The information was collected from the child's medical record and through an interview with the mother, and qualitatively analyzed. The OT practices were associated with the palliative care approach as they worked on physical, socio/family, emotional and spiritual issues of the child and his/her family. The assistance provided joint experiences (mother and child) of activities that favor the child's development and that are not commonly experienced by hospitalized children with SMA. The study indicated that OT contributed to the well-being of the child and the family during the hospitalization process.