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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;
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.
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| Measure | Description | Time Frame |
|---|---|---|
| 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 |
| Measure | Description | Time Frame |
|---|---|---|
| Facilitators of establishing respiratory support | Factors which facilitate initiation and establishing respiratory support for SDB in CYP with CP will be identified through matrix analysis of semi-structured interviews for emerging themes (with a phenomenology methodology). | From enrollment till end of study at 6 months |
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Inclusion Criteria:
- Children and young people with CP and SDB;
Parents/carers of CYP with CP;
Health care professional;
Exclusion Criteria:
Children and young people with CP and SDB and their parents/carers;
Health care professional; Nil
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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.
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| Facility | Status | City | State | ZIP | Country | Contacts |
|---|---|---|---|---|---|---|
| NHS Lothian | Edinburgh | Edinbrugh | EH16 4TJ | United Kingdom | ||
| Department of Paediatric Respiratory and Sleep Medicine, Royal Hospital for Children and Young People |
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| ID | Term |
|---|---|
| D012891 | Sleep Apnea Syndromes |
| D002547 | Cerebral Palsy |
| ID | Term |
|---|---|
| D001049 | Apnea |
| D012120 | Respiration Disorders |
| D012140 | Respiratory Tract Diseases |
| D020919 | Sleep Disorders, Intrinsic |
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| Barriers to establishing respiratory support |
Factors which act as barriers to setting up and establishing respiratory support for SDB in CYP with CP will be identified through matrix analysis of semi-structured interviews for emerging themes (with a phenomenology methodology). |
| From enrollment till end of study at 6 months |
| Accessibility to sleep services | Strategies to improve accessibility to sleep services for managing SDB in CYP with CP will be identified through matrix analysis of semi-structured interviews for emerging themes (with a phenomenology methodology). | From enrollment till end of study at 6 months |
| Edinburgh |
| Merseyside |
| EH16 4TJ |
| United Kingdom |
| D020920 |
| Dyssomnias |
| D012893 | Sleep Wake Disorders |
| D009422 | Nervous System Diseases |
| D001925 | Brain Damage, Chronic |
| D001927 | Brain Diseases |
| D002493 | Central Nervous System Diseases |