Experiences of Managing Sleep Disordered Breathing in Children With Cerebral Palsy. (NCT06753370) | Clinical Trial Compass
CompletedNot Applicable
Experiences of Managing Sleep Disordered Breathing in Children With Cerebral Palsy.
United Kingdom24 participantsStarted 2025-02-28
Plain-language 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 learning, 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 is called '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, the investigators aim to explore the impact SDB and it's management has on children
Who can participate
Age range
1 Month – 16 Years
Sex
ALL
See this in plain English?
AI-rewrites the medical criteria so a patient or caregiver can understand them. Always confirm with the trial site.
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
Questions worth asking your doctor
Bring these to your next appointment. They're a starting point for a shared conversation — not a sign you qualify or a recommendation to enrol.
1Since this study is focused on gathering experiences rather than testing a treatment, could discussing our family's journey with sleep disordered breathing in our child with cerebral palsy actually help shape how care is delivered in the future?
2This trial is no longer recruiting new participants — are there any similar qualitative or observational studies currently open that we could still join to share our experiences?
3Given that this research is looking at how sleep disordered breathing is assessed and managed in children with cerebral palsy, are there gaps in our current care plan around sleep monitoring or respiratory support that we should be addressing now, regardless of any study?
4The study is collecting perspectives from both families and healthcare professionals — does our care team already follow updated guidelines for identifying and managing sleep disordered breathing specifically in children with cerebral palsy, or is this an evolving area where practice is still catching up?
5Since this is a qualitative study with no phase rating, it won't test a new treatment directly — so what evidence-based options exist today for managing our child's sleep disordered breathing that we should be exploring in the meantime?
Generated to help you prepare — always confirm anything about your own eligibility and care with the study team and your doctor.
Questions for the trial coordinator
The trial coordinator is the person who runs the study day to day. These cover the practical side — logistics, costs, and what taking part would actually mean for your life. The study team confirms whether you meet the criteria; these are questions to ask, not a sign you qualify.
1What does taking part actually involve week to week — how many visits, where, and how long does each one take?
2What costs are covered by the study, and what might I have to pay for myself, including travel, parking, or time off work?
3What happens during screening, and what happens if the study team confirms I don't meet the criteria after those tests?
4Who pays for the scans, blood work, and other tests the trial requires — the study, my insurance, or me?
5How will being in the trial affect my regular care, and will my own doctor stay informed and involved?
6Can I leave the trial at any point if I change my mind, and what would happen to my care if I do?
A starting point for the conversation — always confirm anything about your own eligibility, costs, and care with the study team and your doctor.
What they're measuring
1
Themes describing experiences of assessment and management of sleep disordered breathing in children and young people with CP
Timeframe: From enrolment till end of study at 6 months
2
Themes describing experiences of assessment and management of sleep disordered breathing in family members and carers of children with CP.
Timeframe: From enrollment till end of study at 6 months
3
Themes describing experiences of assessment and management of sleep disordered breathing in healthcare professionals of children with CP.
Timeframe: From enrolment till end of study at 6 months