Development of consensus-based guidelines for managing communication of individuals with Rett syndrome

Gillian S Townend*, Theresa E Bartolotta, Anna Urbanowicz, Helena Wandin, Leopold M G Curfs

*Corresponding author for this work

Research output: Contribution to journalArticleAcademicpeer-review

7 Citations (Web of Science)

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.

Original languageEnglish
Pages (from-to)71-81
Number of pages11
JournalAugmentative and Alternative Communication
Volume36
Issue number2
DOIs
Publication statusPublished - 28 Jul 2020

Keywords

  • 3 GIRLS
  • AAC
  • ABILITIES
  • ALTERNATIVE COMMUNICATION
  • Augmentative and alternative communication
  • BEHAVIORS
  • Delphi survey
  • EARLY INTERVENTION
  • EYE GAZE
  • MANAGEMENT
  • MECP2
  • Rett syndrome
  • TECHNOLOGY
  • clinical practice guidelines
  • consensus-based guidelines
  • expert consensus

Cite this