How to make it easier?

Life is full of challenges and it could get harder if you are to live with sudden illness or disability. It is not only patients who need time to adapt to the big changes in life but also their families and friends. Many adults do not find that easy and some may seek guidance and help.

How about children? How well do they understand serious illness or condition such as spinal cord injury (SCI)? What can they do to cope with the issue and frustration as a witness or a patient?

The cover of the ACI’s guide on talking to children about SCI.

Considering the lack of specific resources available to assist children through the impact of SCI, the Agency for Clinical Innovation (ACI) of New South Wales, Australia, has developed a 30-page booklet named “Talking to Your Children About Spinal Cord Injury: A Practical Guide For Families”.

The booklet offers guidance and resources to assist people with SCI in explaining their situations to children. It includes topics such as how to break the news to children, the consideration of child’s age for suitable communication approach and sample answers to tough questions from children. Some worksheets illustrate the different body parts and the impact of SCI. Overall, the contents of the booklet are presented in a very structured and visually appealing way. 

Illustration from “Dad Had A Spinal Cord Injury, and What Happened Next”.

The booklet also provides lists of references and further reading to help one prepare their discussion of SCI with children. Since the booklet was updated last in 2013, a few web links are not valid anymore. However, many of them are retrievable by searching the given titles with a web search engine – for example, the 23-page story book Dad Had A Spinal Cord Injury, and What Happened Next”, which I also recommend you to read because it is a moving story with lovely illustrations.

Similarly, the National Health Service from UK has also developed a 10-page leaflet to support parents with SCI to explain their situation and help children adjust effectively. Compared to the ACI booklet, this leaflet is updated more recently and includes also a lot of helpful information, however, it provides plain text without any illustrations.

Fact sheets like this offer various tips for parents and children to cope with SCI. (Source: The Sydney Children’s Hospitals Network)

What if it is the child who has SCI? Then you might find helpful these 13 factsheets to various SCI-related topics under the category “Spinal cord injury” on the Sydney Children’s Hospitals Network. They provide comprehensive information for parents of children with SCI. Some sheets present medical topics like bladder and bowel management. Others highlight social topics like reintegration to school, relationships and sexuality, and they even discuss psychological issues like dealing with anxiety, grief and loss. The sheets were developed in partnership by Sydney Children’s Hospital, The Children’s Hospital at Westmead and Hunter New England Kidshealth Network.

Last but not least, you may want to check out the blog post Coping Books for Children with Spinal Cord Injuriespublished on SpinalCord.com. It offers a brief overview of books for both children and parents affected by SCI. The recommended books for children may not address SCI issues directly, but they are certainly entertaining and supportive for children to understand disability and cope better with their own situation.

What are your experiences with explaining SCI to children? We would love to hear your tips and thoughts!

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