Managing sleep-disordered breathing in children with cerebral palsy
Experiences of Children and Young People (CYP) With Cerebral Palsy (CP), Their Parents/Caregivers and Healthcare Professionals in Managing Sleep Disordered Breathing (SDB).
Researchers will interview children with cerebral palsy who have sleep-disordered breathing, their parents/carers, and healthcare professionals to see how respiratory support is managed and experienced.
Quick facts
| Study type | Observational |
|---|---|
| Enrollment | 20 (estimated) |
| Ages | 1 Month to 16 Years |
| Sex | All |
| Sponsor | University of Edinburgh Academic / other |
| Locations | 2 sites (Edinburgh, Edinbrugh and 1 other locations) |
| Trial ID | NCT06753370 on ClinicalTrials.gov |
What this trial studies
This qualitative project uses semi-structured interviews to capture the experiences of children with cerebral palsy (under 16) who have been managed for sleep-disordered breathing, their parents/carers, and clinicians. The team aims to interview about 10 children and/or their parents/carers and 10 healthcare professionals, continuing until no new themes emerge. Participants will be identified via the sleep/long-term ventilation clinical team and through charity and professional networks, with interviews conducted in person or remotely as arranged. Data will be analyzed thematically to identify barriers, facilitators, and opportunities to improve recognition and management of sleep-disordered breathing in this group.
Who should consider this trial
Good fit: Ideal participants are children under 16 with a formal diagnosis of cerebral palsy and sleep-disordered breathing who can communicate or engage in an interview (with parental/carer support as needed), plus their parents/carers and clinicians involved in their care.
Not a fit: Children receiving respiratory support for neonatal failure to wean, chronic lung disease, or for other neuromuscular/neurodisability conditions are excluded and unlikely to benefit from findings focused on CP-related sleep breathing issues.
Why it matters
Potential benefit: If successful, the results could improve how respiratory support and follow-up are delivered to children with cerebral palsy, reducing sleep-related harm and easing family/carer burden.
How similar studies have performed: Qualitative interviews in related pediatric respiratory populations have provided actionable service-improvement insights, but focused qualitative research specifically on sleep-disordered breathing in children with cerebral palsy remains limited.
Eligibility criteria
Show full inclusion / exclusion 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
Where this trial is running
Edinburgh, Edinbrugh and 1 other locations
- NHS Lothian — Edinburgh, Edinbrugh, United Kingdom (Not_yet_recruiting)
- Department of Paediatric Respiratory and Sleep Medicine, Royal Hospital for Children and Young People — Edinburgh, Merseyside, United Kingdom (Recruiting)
Study contacts
- Study coordinator: Research Fellow
- Email: rajkumar.dhandayuthapani@nhs.scot
- Phone: + 44 01313121124
How to participate
- Review the eligibility criteria above with your treating physician.
- Visit the official trial page on ClinicalTrials.gov for the most current contact information and recruitment status.
- Contact the listed study coordinator or principal investigator to request pre-screening. Pre-screening is free and never obligates you to enroll.