Dados do Trabalho

Título

The painful mission of communicating the diagnosis of spinal muscular atrophy to children

Resumo

Introduction: The trinomial relationship between the doctor-child-legal guardian is essential in the process of a disease communicating and its prognosis. Objectives: To analyze the communication of the diagnosis of spinal muscular atrophy (SMA) by this trinomial relationship . Methodology: Relatives of SMA patients answered a questionnaire containing objective questions and the Event Impact Scale – Revised. Results: The sample consisted of 50 volunteers, 94% of whom were female. 48% reported psychological sequelae related to the moment of diagnosis, having a direct correlation when the communication was made by them. 22% have a high risk of post-traumatic stress, relating the feeling of unpreparedness in communicating with the child. Conclusions: It was identified that the failure in communication is the main factor for negative repercussions with self-report of psychological sequelae, in addition to the high risk for post-traumatic stress syndrome.