Introduction We present a 14-year-old girl (A) with Trisomy 21 who was referred for set up of NIV due to severe obstructive sleep apnoea (AHI 13.4/hour) and disturbed sleep. She habitually wandered into her parent’s bedroom, where she would then spend the night. This sleep habit had a negative impact on A and the whole household. A consequently struggled with daytime tiredness and would regularly fall asleep during the afternoon at school.
Method We reviewed A’s sleep habits and planned a graded application of NIV. Firstly, promoting a consistent bedtime routine alongside using an age-appropriate picture book (figure 1) about NIV, then introducing the NIV mask, and finally the ventilator.
The Long-Term Ventilation team at Alder Hey have developed a bedtime story book to promote good sleep hygiene and bedtime without screens, highlighting the process and advantages of wearing ventilation in a child friendly way. This was utilised in A’s case to improve her understanding and create excitement around using NIV.
A was immediately successful in establishing on ventilation using this approach. Parents were then keen to promote independent sleeping, so we utilised a social story including her favourite characters to encourage this. This was also successful, and A is now sleeping consistently in her own room and is compliant with her NIV.
‘The story is a big success. She really loves it. Thank you so much. We have had good success with sleeping alone’ - Mum
Conclusion A is less tired in the daytime and the whole family are benefitting from better sleep.
Utilising age-appropriate story books about NIV and social stories to encourage a consistent bedtime approach can aid NIV set up and help improve habitual sleep behaviours in children.
This is an open access article distributed in accordance with the Creative Commons Attribution Non Commercial (CC BY-NC 4.0) license, which permits others to distribute, remix, adapt, build upon this work non-commercially, and license their derivative works on different terms, provided the original work is properly cited, appropriate credit is given, any changes made indicated, and the use is non-commercial. See: http://creativecommons.org/licenses/by-nc/4.0/.
Statistics from Altmetric.com
If you wish to reuse any or all of this article please use the link below which will take you to the Copyright Clearance Center’s RightsLink service. You will be able to get a quick price and instant permission to reuse the content in many different ways.