Intervenção fisioterapêutica colaborativa família-profissional em uma criança com Síndrome de Joubert: relato de caso

Abstract

Abstract

Introduction: Joubert syndrome (JS) is a rare and complex neurodevelopmental disorder of genetic origin. The collaborative family-professional model is an approach that aims to share responsibility between family members and professionals. Since there are no studies showing the relationship between SJ and Family-Centered Practice (FCP), it is important to publicize the pathology and the effects of physiotherapeutic intervention based on this model. Therefore, the aim of this study was to describe the use of the collaborative family-professional model in a child with SJ. Materials and Methods: This is a case report of a 6-year-old child with SJ. Two goals were set together with the family and a home-based, goal-oriented family-professional collaborative intervention program was structured, aimed at achieving the goals. Results: After 8 weeks of intervention the two goals were achieved beyond expectations. Greater changes were observed in the continuous scores of the mobility and responsibility domains. Conclusion: The use of a collaborative family-professional intervention with a child with SJ enabled the established goals to be achieved and revealed positive results in terms of the child's and family's performance.