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

Isabella Araujo Mota Fernandes (), Renata Oliveira Almeida Menezes and Guilhermina Rego
Additional contact information
Isabella Araujo Mota Fernandes: Faculty of Medicine, University of Porto, 4200-319 Porto, Portugal
Renata Oliveira Almeida Menezes: Law Department, Federal University of Rio Grande do Norte, Caico 59300-000, Brazil
Guilhermina Rego: Faculty of Medicine, University of Porto, 4200-319 Porto, Portugal

IJERPH, 2022, vol. 19, issue 24, 1-9

Abstract: 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.

Keywords: spinal muscular atrophy; physician-patient relations; communication; diagnosis (search for similar items in EconPapers)
JEL-codes: I I1 I3 Q Q5 (search for similar items in EconPapers)
Date: 2022
References: View references in EconPapers View complete reference list from CitEc
Citations:

Downloads: (external link)
https://www.mdpi.com/1660-4601/19/24/16935/pdf (application/pdf)
https://www.mdpi.com/1660-4601/19/24/16935/ (text/html)

Related works:
This item may be available elsewhere in EconPapers: Search for items with the same title.

Export reference: BibTeX RIS (EndNote, ProCite, RefMan) HTML/Text

Persistent link: https://EconPapers.repec.org/RePEc:gam:jijerp:v:19:y:2022:i:24:p:16935-:d:1005617

Access Statistics for this article

IJERPH is currently edited by Ms. Jenna Liu

More articles in IJERPH from MDPI
Bibliographic data for series maintained by MDPI Indexing Manager ().