Communicating the Spinal Muscular Atrophy diagnosis to children and the principle of autonomy

INTRODUCTION: The trinomial relationship between physicians/children/guardians is essential in the process of communicating a disease and its prognosis. OBJECTIVE: Analyzing the exercise of autonomy by this trinomial relationship in communicating the diagnosis of spinal muscular atrophy (SMA). METHODOLOGY: Caregivers of SMA patients answered a questionnaire containing a structured interview and the Event Impact Scale – Revised. RESULTS: The sample comprised 50 volunteers, 94% of whom were female caregivers. Psychological trauma was predominantly reported when caregivers communicated the diagnosis to children. 22% have a high risk of post-traumatic stress, relating the feeling of unpreparedness in communicating this to the child. CONCLUSIONS: It was identified that the failure in communication is the main factor for negative repercussions on the autonomy of children and their guardians, with self-reported psychological trauma, besides the high risk for post-traumatic stress syndrome. SUPPLEMENTARY INFORMATION: The online version contains supplementary material available at 10.1186/s12887-022-03552-3.