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Communication of the Diagnosis of Spinal Muscular Atrophy in the Views of Patients and Family Members, a Qualitative Analysis

Introduction: Communicating the diagnosis of a genetic and neurodegenerative disease, such as spinal muscular atrophy (SMA), requires a transmission centered on the patient and/or the family caregiver, ensuring autonomy to those involved and strengthening the doctor–patient relationship. Objective:...

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Autores principales: Fernandes, Isabella Araujo Mota, Menezes, Renata Oliveira Almeida, Rego, Guilhermina
Formato: Online Artículo Texto
Lenguaje:English
Publicado: MDPI 2022
Materias:
Acceso en línea:https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9779701/
https://www.ncbi.nlm.nih.gov/pubmed/36554814
http://dx.doi.org/10.3390/ijerph192416935
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author Fernandes, Isabella Araujo Mota
Menezes, Renata Oliveira Almeida
Rego, Guilhermina
author_facet Fernandes, Isabella Araujo Mota
Menezes, Renata Oliveira Almeida
Rego, Guilhermina
author_sort Fernandes, Isabella Araujo Mota
collection PubMed
description Introduction: Communicating the diagnosis of a genetic and neurodegenerative disease, such as spinal muscular atrophy (SMA), requires a transmission centered on the patient and/or the family caregiver, ensuring autonomy to those involved and strengthening the doctor–patient relationship. Objective: Analyzing the communication of the SMA diagnosis from the perspective of patients and family members. Methods: This qualitative study was developed through semi-structured interviews, via teleconsultation. The analysis was developed by systematically condensing the answers and synthesizing them into four thematic axes (clarification of the diagnosis, communication of the prognosis, affective memory related to the event, and advice to physicians). Results and discussion: Twenty-nine patients with SMA and 28 family caregivers of people with this condition, from all regions of Brazil, reported that individualized, clear, honest, and welcoming communication, emphasizing positive aspects, in the presence of family members and with the possibility of continuous monitoring, was important to meeting their communication needs. A lack of empathy, monitoring and guidance, and estimating life expectancy resulted in negative experiences. Conclusions: The communication needs of patients and family members described during the clarification of the diagnosis and prognosis of SMA predominantly involve empathic factors related to the attitude of the attending physician throughout the evolution of the disease. Future research evaluating other neurodegenerative diseases and the development of research protocols are important to improving communication between physicians, patients, and family members.
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spelling pubmed-97797012022-12-23 Communication of the Diagnosis of Spinal Muscular Atrophy in the Views of Patients and Family Members, a Qualitative Analysis Fernandes, Isabella Araujo Mota Menezes, Renata Oliveira Almeida Rego, Guilhermina Int J Environ Res Public Health Article Introduction: Communicating the diagnosis of a genetic and neurodegenerative disease, such as spinal muscular atrophy (SMA), requires a transmission centered on the patient and/or the family caregiver, ensuring autonomy to those involved and strengthening the doctor–patient relationship. Objective: Analyzing the communication of the SMA diagnosis from the perspective of patients and family members. Methods: This qualitative study was developed through semi-structured interviews, via teleconsultation. The analysis was developed by systematically condensing the answers and synthesizing them into four thematic axes (clarification of the diagnosis, communication of the prognosis, affective memory related to the event, and advice to physicians). Results and discussion: Twenty-nine patients with SMA and 28 family caregivers of people with this condition, from all regions of Brazil, reported that individualized, clear, honest, and welcoming communication, emphasizing positive aspects, in the presence of family members and with the possibility of continuous monitoring, was important to meeting their communication needs. A lack of empathy, monitoring and guidance, and estimating life expectancy resulted in negative experiences. Conclusions: The communication needs of patients and family members described during the clarification of the diagnosis and prognosis of SMA predominantly involve empathic factors related to the attitude of the attending physician throughout the evolution of the disease. Future research evaluating other neurodegenerative diseases and the development of research protocols are important to improving communication between physicians, patients, and family members. MDPI 2022-12-16 /pmc/articles/PMC9779701/ /pubmed/36554814 http://dx.doi.org/10.3390/ijerph192416935 Text en © 2022 by the authors. https://creativecommons.org/licenses/by/4.0/Licensee MDPI, Basel, Switzerland. This article is an open access article distributed under the terms and conditions of the Creative Commons Attribution (CC BY) license (https://creativecommons.org/licenses/by/4.0/).
spellingShingle Article
Fernandes, Isabella Araujo Mota
Menezes, Renata Oliveira Almeida
Rego, Guilhermina
Communication of the Diagnosis of Spinal Muscular Atrophy in the Views of Patients and Family Members, a Qualitative Analysis
title Communication of the Diagnosis of Spinal Muscular Atrophy in the Views of Patients and Family Members, a Qualitative Analysis
title_full Communication of the Diagnosis of Spinal Muscular Atrophy in the Views of Patients and Family Members, a Qualitative Analysis
title_fullStr Communication of the Diagnosis of Spinal Muscular Atrophy in the Views of Patients and Family Members, a Qualitative Analysis
title_full_unstemmed Communication of the Diagnosis of Spinal Muscular Atrophy in the Views of Patients and Family Members, a Qualitative Analysis
title_short Communication of the Diagnosis of Spinal Muscular Atrophy in the Views of Patients and Family Members, a Qualitative Analysis
title_sort communication of the diagnosis of spinal muscular atrophy in the views of patients and family members, a qualitative analysis
topic Article
url https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9779701/
https://www.ncbi.nlm.nih.gov/pubmed/36554814
http://dx.doi.org/10.3390/ijerph192416935
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