Experiences of Children and Young People With Cerebral Palsy and Their Caregivers and Healthcare Professionals in Managing Sleep Disordered Breathing

What this Trial Is About

Cerebral palsy (CP) is a non-progressive movement disorder caused by brain damage around birth. Children with CP often have sleep disordered breathing (SDB), which can cause noisy breathing during sleep, daytime sleepiness, and low energy. This can negatively affect brain function, learning, and heart health. The study explores how SDB and its treatment affect children with CP, their families, and healthcare providers, aiming to improve care and support for these children. The study involves qualitative interviews with children under 16 years old with CP and SDB who have experience with respiratory support treatments such as continuous positive airway pressure (CPAP) or non-invasive ventilation (NIV). Parents or caregivers of these children and healthcare professionals managing their care will also be interviewed. These interviews will explore their experiences and challenges related to assessing and managing SDB in children with CP. Participants will take part in a single interview, conducted in person or online, with written consent obtained beforehand. Researchers will collect additional relevant information during the interview. The study will analyze themes about the assessment, management, and impact of SDB on children, their families, and healthcare providers over a 6-month period. This will help identify barriers and facilitators to respiratory support and service accessibility to improve future care.

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