Developing and testing a toolkit of interventions to improve adherence to non-invasive ventilation in children: a mixed methods study (The SPIRITUS study)
- Conditions
- Sleep disordered breathing in children and young childrenRespiratory
Recruitment & Eligibility
- Status
- Ongoing
- Sex
- All
- Target Recruitment
- 46
Phases 1, 2 and 3:
Children and young people:
1. Age 0-18 years
2. Diagnosis of sleep disordered breathing
3. Have been prescribed NIV >3 months prior to recruitment
4. Under the care of the study site NIV team
Parents and carers:
1. Parents/carers (adults with parental responsibility) of the above children
Staff
1. Study site staff who provide NIV care (medical, nursing, allied health professionals, health care assistants, sleep-unit technicians, physiologists)
Phases 1 and 2:
1. Children and young people
2. Medically dependent on NIV
3. Receiving NIV for palliation
4. Use of NIV for <3 months
5. Weaning off NIV
Parents:
Parent members of the SPIRITUS Study Steering Group
Staff:
Study Site staff who do not work in Study Site NIV service
Phase 3:
Children and young people:
1. Medically dependent on NIV
2. Receiving NIV for palliation
3. Use of NIV for <3 months
4. Weaning off using NIV
Parents and carers:
1. Parents who do not consent for their child’s participation (even if they consent for their own)
2. Parents of children who do not want to take part
3. Parents in the PPI Study Steering Group
4. Parents who took part in Phases 1 and 2
5. Any families involved in intervention development (either PPI activities or the creation of the intervention e.g. a video)
6. Parents who have already tested one intervention
Study & Design
- Study Type
- Interventional
- Study Design
- Not specified
- Primary Outcome Measures
Name Time Method
- Secondary Outcome Measures
Name Time Method