Development of consensus-based guidelines for managing communication of individuals with Rett syndrome.
Augment Altern Commun
; 36(2): 71-81, 2020 06.
Article
em En
| MEDLINE
| ID: mdl-32720526
ABSTRACT
Difficulties with communication have a profound impact on the lives of individuals with Rett syndrome and their caregivers. Globally, many families report difficulty accessing appropriate and timely information and services from professionals with expertise in augmentative and alternative communication (AAC) as it pertains to Rett syndrome. To address this need, international consensus-based guidelines for managing the communication of individuals with Rett syndrome were developed by combining available evidence and lived experience with expert opinion. A two-phase Delphi survey was built on statements and recommendations extracted from a review of over 300 pieces of literature combined with survey responses from communication professionals and caregivers. All statements that reached a pre-determined threshold of ≥70% agreement were incorporated into guidelines that consist of 268 statements and recommendations relating to (a) rights of the individual; (b) beliefs and attitudes of communication partners; (c) professional knowledge and team work; (d) strategies to optimize engagement; (e) assessment; and (f) intervention (targets and goals, techniques), including the use of AAC. To date, this project is the largest of its kind, with 650 participants from 43 countries contributing to development of consensus-based guidelines for Rett syndrome.
Palavras-chave
Texto completo:
1
Coleções:
01-internacional
Base de dados:
MEDLINE
Assunto principal:
Síndrome de Rett
/
Guias de Prática Clínica como Assunto
/
Auxiliares de Comunicação para Pessoas com Deficiência
/
Transtornos da Comunicação
Tipo de estudo:
Guideline
/
Qualitative_research
Limite:
Humans
Idioma:
En
Revista:
Augment Altern Commun
Assunto da revista:
PATOLOGIA DA FALA E LINGUAGEM
Ano de publicação:
2020
Tipo de documento:
Article
País de afiliação:
Holanda