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

NCT06753370 | Recruiting

• 1 other identifier: AC24190
• Study Type: observational
• Target: 20
• Locations: 1 country
• Sites: 2

Brief 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

Conditions

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

Keywords

sleep disordered breathing; cerebral palsy; respiratory support; qualitative research

Outcome Measures

Primary Outcomes (3)

• Themes describing experiences of assessment and management of sleep disordered breathing in children and young people with CP

  Themes describing the experience of children and young people (CYP) with CP in the assessment and management (with respiratory support) of SDB. Emerging themes will be identified through matrix analysis of semi-structured interview (with a phenomenology methodology).

  From enrolment till end of study at 6 months

• Themes describing experiences of assessment and management of sleep disordered breathing in family members and carers of children with CP.

  Themes describing the experience of family member/carer in the assessment and management (with respiratory support) of SDB in CYP with CP. Emerging themes will be identified through matrix analysis of semi-structured interview (with a phenomenology methodology).

  From enrollment till end of study at 6 months

• Themes describing experiences of assessment and management of sleep disordered breathing in healthcare professionals of children with CP.

  Themes describing the experience of healthcare professionals in the assessment and management (with respiratory support) of SDB in CYP with CP. Emerging themes will be identified through matrix analysis of semi-structured interview (with a phenomenology methodology).

  From enrolment till end of study at 6 months

Secondary Outcomes (3)

• Facilitators of establishing respiratory support

  From enrollment till end of study at 6 months

• Barriers to establishing respiratory support

  From enrollment till end of study at 6 months

• Accessibility to sleep services

  From enrollment till end of study at 6 months

Eligibility Criteria

• Age: 1 Month - 16 Years
• Sex: all
• Healthy Volunteers: No
• Age Groups: Child (0-17)
• Sampling Method: Non-Probability Sample

Study Population

Children and young people with cerebral palsy who are (or have been) managed with respiratory support for sleep disordered breathing, their parents/carer and health professionals involved in their care.

You may qualify if:

• \- 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

You may not qualify if:

• 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

Sponsors & Collaborators

• University of Edinburgh: lead

Study Sites (2)

NHS Lothian

Edinburgh, Edinbrugh, EH16 4TJ, United Kingdom

NOT YET RECRUITING

Department of Paediatric Respiratory and Sleep Medicine, Royal Hospital for Children and Young People

Edinburgh, Merseyside, EH16 4TJ, United Kingdom

RECRUITING

MeSH Terms

Conditions

Sleep Apnea Syndromes; Cerebral Palsy

Condition Hierarchy (Ancestors)

Apnea; Respiration Disorders; Respiratory Tract Diseases; Sleep Disorders, Intrinsic; Dyssomnias; Sleep Wake Disorders; Nervous System Diseases; Brain Damage, Chronic; Brain Diseases; Central Nervous System Diseases

Central Study Contacts

Research Fellow

CONTACT

+ 44 01313121124; rajkumar.dhandayuthapani@nhs.scot

Study Design

• Study Type: observational
• Observational Model: COHORT
• Time Perspective: PROSPECTIVE
• Sponsor Type: OTHER
• Responsible Party: SPONSOR

Study Record Dates

• First Submitted: December 9, 2024
• First Posted: December 31, 2024
• Study Start: February 28, 2025
• Primary Completion (Estimated): August 1, 2026
• Study Completion (Estimated): August 1, 2026
• Last Updated: September 30, 2025

Record last verified: 2025-09

Data Sharing

• IPD Sharing: Will not share

Locations

GB (2)