Qualitative evaluation of SDB in children with CP
Research type
Research Study
Full title
Experiences of Children and Young People (CYP) with Cerebral Palsy (CP), their parents/caregivers and healthcare professionals in managing Sleep Disordered Breathing (SDB).
IRAS ID
350086
Contact name
Don Urquhart
Contact email
Sponsor organisation
University of Edinburgh
Duration of Study in the UK
1 years, 0 months, 1 days
Research summary
Cerebral palsy (CP) refers to a non-progressive movement disorder, which occurs due to damage to the developing brain around the time of birth. Symptoms of sleep disordered breathing (SDB) include noisy breathing during sleep, increased day-time sleepiness and reduced energy levels. In the long term, SDB might have an effect on the brain and the way that we learn, as well as putting strain on the heart.
Children with CP have a higher risk of sleep breathing problems compared to typically-developing children. The negative impact of sleep disturbance in children with CP, on their family members/carers’ sleep and mental health cannot be understated. Early recognition and management of SDB is important for children with CP to give these children the best possible sleep quality, and to maximise learning potential.
SDB in children with CP is often under-recognised and under-treated. Treatment of SDB in children with CP might involve wearing a mask that delivers pressurised air to hold open a child’s airway and make breathing easier when they are asleep. This we call ‘respiratory support’ which can be continuous pressure (CPAP) or non-invasive ventilation (NIV) which is pressure support with a back-up breathing rate. There is limited knowledge on the appropriate indications or timing to use them. Though respiratory support in children with CP is proven to help with breathing during sleep, its impact on quality of life, number of hospital admissions or frequency of chest infections is unknown.
This study will analyse the experiences of children with CP being managed for SDB, and the views of their carers/parents, and health professionals involved in their care. By undertaking semi-structured interviews we aim to explore the impact SDB and it's management has on children with CP and their carers; and identify facilitators and barriers to starting respiratory support for children with CP.
REC name
West of Scotland REC 5
REC reference
24/WS/0174
Date of REC Opinion
16 Dec 2024
REC opinion
Further Information Favourable Opinion