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P29 Use of an NIV picture book and social story to promote NIV initiation and consistent bedtime routines in children – a case presentation
  1. Meg Ruecroft and
  2. Alice Little
  1. Alder Hey Children’s Hospital Nhs Trust, Liverpool, UK

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.

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