EMPATIA: A Guide for Communicating the Diagnosis of Neuromuscular Diseases

• Type: Another Publication in an International Scientific Journal
• Date: 2022

Authors

Fernandes, IAM (Author) Other; Menezes, ROA (Author) Other; Guilhermina Rego (Author) FMUP

Journal

Title: International Journal of Environmental Research and Public Health

No. 18

ISSN: 1661-7827

Publisher: MDPI

Indexing

ISI Web of Knowledge - 0 Citations

Scopus - 0 Citations

Other information

Authenticus ID: P-00X-41T

DOI: 10.3390/ijerph19169792

Abstract (EN): Introduction: Neuromuscular diseases comprise a heterogeneous group of genetic syndromes that lead to progressive muscle weakness, resulting in functional limitation. There is a gap in the literature regarding the communication of the diagnosis of such diseases, compromising the autonomy of patients and families, besides causing stress on the assistant physician. Objectives: Developing a guide to reduce communication barriers in the diagnosis of neuromuscular diseases. Methodology: Systematic review, after searching the descriptors (Muscular Diseases OR Neuromuscular Diseases) AND (Truth Disclosure OR Bad news communication OR Breaking bad News) in the Pubmed, Bireme, and Scopus websites, and these results were analyzed through narrative textual synthesis. Results: 16 articles were submitted to the final analysis, giving rise to seven steps to support the communication process. These are Empathy, Message, Prognosis, Reception, Time, Individualization, and Autonomy. Discussion and conclusion: The empathic transmission of the message and the prognosis must accommodate the feelings of the interlocutors with different information needs. In this way, communication planning optimizes the time and individualizes each context, respecting the autonomy of those involved. EMPATIA reflects the bioethical and interdisciplinary analysis of the literature and comes to fill the gap related to the communication of bad news in neuromuscular diseases.

Language: English

Type (Professor's evaluation): Scientific

No. of pages: 15