Experiences of 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).

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

The journey and experience of children with CP being managed for SDB can be unique and varied. Hence a qualitive semi-structed interview will offer the best insight into their journey and learn ways to improve the experiences for other children in the future.

The investigators aim to interview;

• Children with CP aged <16 years old, and able to participate in the interview. No lower age limit is defined, as children with CP can have potential underlying learning disability and chronological lower limit age cut off will not be useful in defining ability to engage with study. Instead, each child will be looked at individually with input from parents/carer to determine ability to engage with study.
• Parents/carers of children with CP. There may be times where only the parent/carer is being interviewed as the child is not able to (or does not wish to) engage with the interview. Where both the child with CP and parent/carer are being interviewed, this will be done concurrently.
• Healthcare professionals involved in the management of children with CP and being (or has been) managed with respiratory support for sleep disordered breathing.

The investigators aim to interview 10 children with CP and/or their parents/carer and 10 health professionals, or till no new themes emerge.

The participants for the interview will be identified by the members of the sleep/LTV team and/or by disseminating the study on charity sites and professional membership groups for suitable individuals to contact the research team to express interest.

Those who have confirmed participation in the study will be invited for a single interview either in person or online. Written consent (on paper copy or online) will be gained before the interview. The interview will be conducted as per the relevant interview schedule for children with CP, parents/carers and health professionals. Relevant additional information about the participant will also be documented in the field notes at time of interview.

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