Dados do Trabalho

Título

Analysis of the communication quality of the diagnosis of spinal muscular atrophy in the view of patients and family members

Resumo

Introduction: The communication of the diagnosis of a genetic and neurodegenerative disease, such as Spinal Muscular Atrophy (SMA), requires a transmission centered on the patient and or on the family, giving autonomy to those involved and strengthening the millenary doctor-patient binomial. Objective: To analyze, from the perspective of patients and family members, the quality of disclosure of the SMA diagnosis. Methodology: Semi-structured interview, via telecall, whose analysis was carried out by systematic condensation of the text, summarized in four thematic axes. Results: Fifty-seven volunteers from all regions of Brazil reported positive and negative experiences about clarifying the diagnosis, communicating the prognosis, affective memory related to the event, in addition to advice to doctors. Discussion: The individualized, clear, honest and welcoming transmission, emphasizing positive aspects, in the presence of family members and with the possibility of continued monitoring, were important to meet the communication demands. Among the barriers found, the lack of empathy, the estimation of life time and the absence of guidance and follow-up stand out. Conclusion: Failures in the transmission of the SMA diagnosis, in the perception of patients and families, alert about the need for improvement and adequacy of communication techniques and protocols, for the application of ethical principles in medical practice.