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

• Tipo: Artigo em Revista Científica Internacional
• Data: 2022

Autores

Fernandes, IAM (Autor) Outra; Menezes, ROA (Autor) Outra; Guilhermina Rego (Autor) FMUP

Revista

Título: BMC Pediatrics

ISSN: 1471-2431

Editora: Springer Nature

Indexação

ISI Web of Knowledge - 0 Citações

Scopus - 0 Citações

Outras Informações

ID Authenticus: P-00X-2RP

DOI: 10.1186/s12887-022-03552-3

Abstract (EN): 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.

Idioma: Inglês

Tipo (Avaliação Docente): Científica

Nº de páginas: 8