The CHARGE Information Pack for Practitioners

Sense has launched a new comprehensive information pack which offers 28 in-depth factsheets about the many aspects of living with CHARGE syndrome.

These have been written by some of the leading specialists in this field from around the world, including paediatricians, teachers, psychologists and social workers.  The factsheets have been rigorously checked and peer-reviewed to ensure that they meet the Department of Health’s Information Standard.

Although titled as being for practitioners, this resource is also aimed at parents of children and young people with CHARGE who want to learn more about their son's or daughter's condition.

Image of the CHARGE Pack front cover

The factsheets are available to download individually as pdfs, to allow parents and carers to pass the relevant factsheet or factsheets on to any given practitioner working with their child.

We welcome all comments and feedback for all of the factsheets. Email knowledge@sense.org.uk

To download any of the pdf factsheets, please follow the links below.

1.  An overview of CHARGE
Describes some of the key aspects of CHARGE syndrome and the importance of support for parents of children and young people with CHARGE.

2.  Collaborative working
The importance of professionals working collaboratively to support children and young people with CHARGE syndrome.

3. The major and minor diagnostic criteria
Precise criteria for how CHARGE can be diagnosed in children and young people.

4. Genetics
Describes the genetic causes of CHARGE syndrome and how these can be tested for.

5. Endocrine issues
The relationship between hormones and CHARGE syndrome

6. Anaesthesia issues
Guide for anaesthetists. What are the risks of having an anaesthetic for a child with CHARGE syndrome?

7. Hearing and audiological assessment
What causes hearing loss and how children and young people with CHARGE syndrome can be tested.

8. Cochlear implants
Which children and young people with CHARGE syndrome a cochlear implant may be suitable for.

9. Assessment for vision
What causes vision loss and how children and young people can be tested.

10. Visual behaviours
How to support children and young people with CHARGE syndrome with different types of visual loss.

Fancesco Saponara and Adam Howarth11. Sensory integration
What is meant by sensory integration and how to help children and young people with CHARGE syndrome with sensory defensiveness.

12. Communication
How to support children and young people with CHARGE syndrome with the development of their communication.

13. Eating and drinking issues
The causes of eating and drinking difficulties for children and young people with CHARGE syndrome and how to alleviate them.

14. Patterns of early development
The impact of CHARGE syndrome on a child's early development.

15. Early intervention
The importance of a child with CHARGE syndrome getting support early.

16. Educational needs and support
Meeting the individual educational needs of children and young people with CHARGE syndrome.

17. Behaviour
Understanding and responding to behaviour that might be considered challenging in children and young people with CHARGE syndrome.

18. Social and emotional development
How children and young people with CHARGE syndrome can be supported with their social and emotional development.

19. Mental health issues
How mental health difficulties can be recognised and understood in children and young people with CHARGE syndrome

20. Sleep difficulties
Causes of sleep difficulties faced by children and young people with CHARGE syndrome and how to manage them.

21. A parent's perspective
A parent who has a daughter with CHARGE syndrome explains what parents need.

22. The role of the Intervenor
How an intervenor can help a child or young person with CHARGE syndrome to learn and grow in confidence.

23. Guidance for health visitors
Useful information for health visitors working with children and young people with CHARGE syndrome.

Gill Moosajee and Ruby Rodgers

24. The role of the GP
Useful information for GPs who have a child or young person with CHARGE syndrome as a patient.

25. The role of the Occupational Therapist
Useful information for occupational therapists working with children or young people with CHARGE syndrome.

26. The speech and language therapist
Useful information for speech and language therapists working with a child or young person with CHARGE syndrome.

27. Guidance for Social Workers
Useful information for social workers working with a child or young person with CHARGE syndrome.

28. CHARGE syndrome in adulthood
Explanation of later onset features and the support that may be needed for an individual with CHARGE syndrome during adulthood.

To help support hospital staff we have also produced a practical booklet – Multi-Sensory Impaired Children in Hospital, available in an A4 booklet and A5 fold and staple booklet. This explains what is meant by multi-sensory impairment and how this affects the everyday lives of children and families. It also offers practical tips and ideas to help make the hospital stay less stressful - and includes resources for staff who would like to know more. 
 

First published: Wednesday 20 November 2013
Updated: Tuesday 16 February 2016