CHARGE
syndrome
Gail has worked with children and young people with CHARGE for over 20 years, and has a particular interest in this very special group of individuals.
Gail has successfully completed her PhD studies, investigating the education of learners with CHARGE. It is anticipated a number of papers/articles will result from this work.
In addition to undertaking specialist assessments and providing advice and support, Gail has also been involved in a number of articles and research in this area. A summary of some of these materials is provided below.
Deuce, G. (2018) CHARGE syndrome: Supporting the development of peer interactions in school DBI Review January 60: 29-31 Click here
Abstract: This article summarises a presentation given at the CHARGE pre-conference at the DBI conference held in Denmark 2017. It outlines some of the issues learners with CHARGE syndrome may experience, and suggests strategies that may be helpful.
Deuce, G. (2017) The education of learners with CHARGE syndrome British Journal of
Special Education. 44(4): 376-393 Click here
A paper that arose from Gail's PhD thesis and research findings
Abstract:CHARGE syndrome, although a low incidence condition, is now recognised as a
leading cause of congenital deafblindness among genetic conditions. Anecdotal reporting has
suggested that learners with CHARGE syndrome are distinct from the wider deafblind population. This study investigates the education of learners with CHARGE syndrome, while also examining what the similarities and differences might be between this group of learners and the wider deafblind population. The findings of this study support the identification of potential learning characteristics of individuals with CHARGE syndrome, and also indicate that educational deafblind practice is applicable for this group of learners, although alternative or additional strategies may be required. Both commonalities and distinctions were found, but it was concluded that educationally there may be something unique and distinct in learners with this condition.
Gail's PhD thesis:
CHARGE syndrome is a medical diagnosis. Can it also be an educational diagnosis? Click here
Abstract: CHARGE syndrome is a common cause of congenital deafblindness, but it has been contended individuals with CHARGE form a distinct group within the broader deafblind population. This thesis explores the education of learners with CHARGE and what the similarities and differences between these two groups might be. A review of literature identifies reported anomalies that may impact upon learning and development, and establishes very limited research-based evidence is available with regard to educational practice with this group of learners. Cycle 1 of this investigation involved document analysis of educational reports, revealing internal factors considered to influence learning and development, and external factors including assessment, support from external professionals and teaching strategies. These were explored further in Cycle 2 involving a questionnaire to teachers of a child with CHARGE and interviews of practitioners in an overseas educational establishment. Commonalities and distinctions between learners with CHARGE and the wider deafblind population were found, and also that established educational deafblind practice is applicable to learners with CHARGE, but that strategies may be alternatively employed and additional strategies also required. A variation in educational provision was also found according to the type of placement attended. In conclusion it was considered that, in a broad sense, educationally there is something unique and distinct in learners with CHARGE.
Educating learners with CHARGE syndrome. An outline of this research for parents of children and young people with CHARGE.
Extract from the CHARGE Family Support Group newsletter. January 2016 Click here
The CHARGE Information Pack for Practitioners
Gail was co-editor for this pack of information, along with Stephen McCarthy, and involved in writing a number of the factsheets. Sense launched this comprehensive information pack which offers 28 in-depth factsheets about the many aspects of living with CHARGE, written by some of the leading specialists in this field. This pack is aimed at practitioners, but also with the intention of providing a useful resource for parents of a child or young person with CHARGE.
The pack can be downloaded from the Sense website with each factsheet available to download individually. Click here
Deuce, G., Howard, S., Rose, S. and Fuggle, C. (2012) A Study of CHARGE syndrome
in the UK. The British Journal of Visual Impairment. 30: (2): 91–100 Click here
Abstract
This article reports findings of a questionnaire completed by 44 families living in the UK with a
child (aged 15 years or younger) with a medical diagnosis of CHARGE syndrome.
The questionnaire contained three sections, namely Diagnosis (including medical and health issues), Child development, and Educational provision. This article reports on the findings of the first section (Diagnosis) that provided information on the presence of major and minor characteristics of CHARGE using the diagnostic criteria outlined and other existing conditions, diagnosis, the provision of vision and hearing aids, genetic testing and regularly prescribed medication. Where possible, the findings were compared with other literature. The findings suggest that affected individuals are receiving a diagnosis at an earlier age than previously. Occurrence of the major characteristics on the whole matched the rate of incidence reported in other literature, with the exception of the presence of a facial palsy that was found to be higher in this study. Many of the minor characteristics were reported by participants, who also reported additional issues including sleep difficulties and sensory integration difficulties. This study also showed this is a highly medicated population. This article provides a reflection on the relevance of these findings for practitioners working with diagnosed children and their families to support everyday living and learning.
An overview of CHARGE syndrome Handouts from a presentation by Gail at the Sense – 21st Century CHARGE Conference, 11-13 March 2011 Click here
Supporting the learner with CHARGE syndrome A handout from a workshop by Gail Click here
Deuce, G. and Brown, D. (2011) Minding the Difference: Talking to individuals about
their condition of CHARGE syndrome. DbI Review. 46: (Jan- June): 24-26 Click here
This article presents the findings of a survey of families including a young person or adult with
CHARGE, exploring when, how and why should you talk to your child with CHARGE
about the syndrome.
