Experiences of Managing Sleep Disordered Breathing in Children With Cerebral Palsy.

Launched by UNIVERSITY OF EDINBURGH · Dec 20, 2024

Keywords

ClinConnect Summary

This clinical trial is focused on understanding the experiences of children with cerebral palsy (CP) who have sleep disordered breathing (SDB) and how their treatment affects them and their families. Sleep disordered breathing is when a child has trouble breathing while they sleep, which can lead to noisy breathing, daytime sleepiness, and lower energy levels. This condition can also affect a child's brain development and overall health. The study will gather insights from children aged under 16 with CP and SDB, their parents or caregivers, and healthcare professionals who help manage their care.

To participate, children must have a formal diagnosis of both CP and SDB and should be currently or previously receiving support for their breathing at night. Parents and caregivers of these children, as well as healthcare professionals involved in their treatment, are also welcome to share their experiences. Participants can expect to engage in interviews that explore how SDB and its management impact the child and the family. This research is important because it aims to improve the recognition and treatment of sleep breathing issues in children with CP, ultimately enhancing their quality of life and learning potential.

Gender

ALL

Eligibility criteria

• Inclusion Criteria:
• • - Children and young people with CP and SDB;
• • Children and young people aged less than (but not including) 16 years old
• • Formal diagnosis of Cerebral Palsy
• • Formal diagnosis of Sleep Disordered Breathing (currently or previously managed with respiratory support)
• • Able to understand, communicate (with or without aids) and engage with interview (guided by parents/carer opinion on capacity to engage in interview)
• • Parents/carers of CYP with CP;
• • Parents/carer of CYP with CP and SDB being (or has been) managed with respiratory support
• • Health care professional;
• • Professionals (based in community or hospital setting) involved in the management of SDB in CYP with CP
• Exclusion Criteria:
• • Children and young people with CP and SDB and their parents/carers;
• • CYP with CP on respiratory support for failure to wean as neonate or for Chronic Lung Disease
• • CYP on respiratory support for other neuromuscular or neurodisability conditions
• • Health care professional; Nil