Communication Research and the Rett Syndrome Communication Guidelines (Croatian)

In this talk, Gill Townend presents an overview of the Rett Syndrome Communication Guidelines and highlight recent research that supports and strengthens various elements within the guidelines. 

Difficulties with communication have a profound impact on the lives of individuals with Rett syndrome and their caregivers. Many families report difficulty accessing appropriate and timely information and services from professionals with expertise in the field of communication and Rett syndrome. To address this need, a project was funded in 2016 by Rettsyndrome.org (now the International Rett Syndrome Foundation) to develop international guidelines for assessment, intervention and long-term management of communication in individuals with Rett syndrome. Led by an international consortium, guidelines were developed by combining available evidence with expert consensus. Following systematic reviews of literature, surveys were conducted with communication professionals and caregivers to capture lived experience of Rett syndrome. From analysis of the combined results, statements were extracted and reviewed in a 2-stage modified Delphi process by an expert panel of experienced professionals and caregivers. The resulting English-language guidelines were published in 2020 and are now available in multiple languages (US and UK English, Spanish, Swedish, Russian, (Brazilian) Portuguese, Polish, German) and soon-to-be available in more (Dutch, Turkish, French, Chinese.)

During the talk, Gill will present example from different sections of the Guidelines. 

·      Townend GS, Bartolotta TE, Urbanowicz A, Wandin H, Curfs LMG. (2020). Development of consensus-based guidelines for managing communication in individuals with Rett syndrome. Augmentative and Alternative Communication. 36(2), 71-81. DOI: 10.1080/07434618.2020.1785009 

·      Townend GS, Bartolotta TE, Urbanowicz A, Wandin H, Curfs LMG. (2020). Rett syndrome communication guidelines: a handbook for therapists, educators and families. Rett Expertise Centre Netherlands-GKC, Maastricht, NL, and Rettsyndrome.org, Cincinatti, OH.