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Research Articles

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

ORCID Icon, ORCID Icon, ORCID Icon, ORCID Icon & ORCID Icon
Pages 71-81 | Received 19 Dec 2018, Accepted 02 Jun 2020, Published online: 28 Jul 2020
 

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.

Acknowledgements

The research team wishes to thank all of the caregivers and professionals who contributed to this project in any way.

Disclosure statement

Theresa Bartolotta has a family member with Rett syndrome. All other authors report no non-financial conflicts of interest.

Notes

1 NVivo is a product of QSR International, https://qsrinternational.com/nvivo/nvivo-products/.

Additional information

Funding

This work was supported by Rettsyndrome.org under HeART Grant number 3208.