Abstract
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.