RecruitingOBSERVATIONAL

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

This study aims to understand the experiences of children with cerebral palsy (CP) who also have problems with their breathing during sleep (called Sleep Disordered Breathing or SDB). Children with CP often face a higher risk of SDB, which can lead to noisy breathing, tiredness, and affect their learning and heart health in the long run. The study will talk to these children, their parents or carers, and healthcare professionals to learn how SDB is currently managed and how it impacts their lives. This includes looking at treatments like special breathing machines. The goal is to find better ways to recognise and manage SDB earlier, helping these children get better sleep and improve their overall well-being.

At a glance

Status

Recruiting

Sponsor

University of Edinburgh

Enrolment target

Start

28 Feb 2025

Estimated completion

01 Aug 2026

Sleep Disordered Breathing (SDB)Cerebral Palsy (CP)Respiratory Support

What is this study about?

This study is about understanding how sleep problems affect children with cerebral palsy (CP). CP is a condition that affects movement and muscle control due to brain damage that happened early in life. Many children with CP also have trouble breathing properly while they sleep, which doctors call Sleep Disordered Breathing, or SDB. This can make them breathe noisily, feel tired during the day, and long-term, it can even affect their learning and put a strain on their heart.

Catching and treating SDB early is really important for children with CP. Good sleep helps them learn better and feel more energetic. Sometimes, SDB might be treated with a special mask worn at night that helps keep their airways open. These masks can use continuous positive airway pressure (CPAP) or non-invasive ventilation (NIV), which are special types of breathing support. We know these treatments can help with breathing, but we don't always know how they affect a child's quality of life, how often they need to go to hospital, or if they get fewer chest infections.

This study wants to hear directly from children with CP who get help for SDB, their parents or carers, and the healthcare team looking after them. By listening to their stories, the researchers hope to get a clearer picture of what it's like to live with SDB and its treatments. This will help them understand what works well and where improvements can be made, so that future children with CP who have SDB can get even better care.

Key takeaways

Study focuses on understanding sleep breathing problems (SDB) in children with cerebral palsy (CP).
Aims to gather experiences from children, parents/carers, and healthcare professionals.
SDB can affect a child's energy, learning, and heart health.
Wants to learn about the use and impact of breathing support machines.
Results could help improve future SDB care for children with CP.
Participation involves a single, one-on-one interview.

Who may be eligible?

This study is looking for a few different groups of people to take part. Firstly, they're looking for children with cerebral palsy (CP) who are under 16 years old and who have also been diagnosed with problems breathing during sleep (SDB). These children will have either used or be currently using a breathing support machine. It’s important that they can understand and take part in an interview, and their parents or carers will help decide if they are able to.

Secondly, the study also wants to talk to parents or carers of children fitting the description above, even if the child themselves can't take part in an interview. Lastly, healthcare professionals like doctors or nurses who look after children with CP and SDB, especially those who use breathing support, are also invited to share their experiences.

There are some reasons why someone might not be able to join. For children, this includes if they are using breathing support for conditions like being unable to breathe on their own after being a baby (neonate) or for severe lung disease, or for other nerve or muscle conditions that affect their breathing.

Could this study suit you?

Answer these quick questions to see if you may be eligible. This is a guide only — the research team makes the final call.

Is your child under 16 years old?
Does your child have a formal diagnosis of Cerebral Palsy?
Has your child been diagnosed with Sleep Disordered Breathing and used breathing support for it?
Can your child understand and comfortably take part in a conversation (interview)? (Or are you a parent/carer of such a child?)
Are you a healthcare professional involved in managing SDB in children with CP?

Answer every question to see your result.

What does participation involve?

If you or your child are invited to take part, it will involve a single interview. This interview can happen either in person or online, depending on what's best for you. Before the interview starts, you'll be asked to give your written permission (consent) to take part. The interview will involve talking about your or your child's experiences with sleep disordered breathing and its management. The researchers will also make notes about some general information, like age. There are no medications involved, no hospital visits, and no long-term follow-up beyond the single interview.

Potential risks and benefits

Taking part in this study could offer several benefits. By sharing your experiences, you'll be helping researchers understand sleep disordered breathing in children with cerebral palsy better, which could lead to improved care for others in the future. There are very few risks involved, as the study only involves an interview and does not include any medical treatments or procedures. You are free to stop the interview or withdraw from the study at any time without giving a reason, and this will not affect your or your child's medical care in any way.

Locations (2)

Some site locations are approximate. We're improving this — please verify with the trial team before travelling.

NHS Lothian
Verified postcode
Edinburgh, United Kingdom· Not yet recruiting
Department of Paediatric Respiratory and Sleep Medicine, Royal Hospital for Children and Young People
Verified postcode
Edinburgh, United Kingdom· Recruiting

Common questions

What is Sleep Disordered Breathing (SDB)?

SDB means a child has problems breathing properly while they are asleep. This can show up as noisy breathing, feeling very tired during the day, or having less energy.

Why are children with Cerebral Palsy (CP) more at risk?

Children with CP tend to have a higher chance of developing SDB compared to other children. This is because CP can affect the muscles involved in breathing and controlling the airway.

What is 'respiratory support'?

Respiratory support is when a mask is used during sleep to deliver air pressure. This helps to keep the child's airway open, making it easier for them to breathe.

Will my child have to do something they don't want to?

No, if your child participates, it will be an interview. Their ability and willingness to engage will be considered, and they can stop at any time. There's no pressure on them to participate if they don't want to or can't.

Will taking part affect my child's medical care?

No, taking part in this study, or choosing not to, will not affect the medical care your child receives in any way.

How to find out more

Research Fellow

rajkumar.dhandayuthapani@nhs.scot + 44 01313121124 Official trial record

Always speak to your GP or specialist before deciding to take part in a study.