ADAPT - Airway Drainage And Positioning Night-Time
Neurological and respiratory, other diseases of the respiratory system, other disorders of the nervous system
The research physiotherapist employed at the local NHS site will collect baseline data about the CYPCN from the parents/guardians including medical history and current orthopaedic concerns, medication, sleep patterns, and use of sleep positioning equipment. Intervention group: The baseline data will identify any potential issues to implementation of the intervention so they can be addressed. Any medical concerns will be discussed with the respiratory and/or community paediatrician. The research team (CENTRAL OR LOCAL) will support the site research physiotherapists with any concerns or issues arising. Adoption of this new intervention changes usual practice in postural care positioning, and the research team will work closely with the site PI/site research physiotherapist, CYPCN’s physiotherapists and wider health team to support changes in practice, adapting existing night-time positioning and taking other needs into account. The new intervention involves the child being positioned partway onto their front and supported by their usual night-time positioning equipment or pillows. Their stomach contents are drained overnight via their existing feeding tube to minimise the risk of reflux. The site research physiotherapist and local physiotherapist, if required, will visit the CYPCN and their parents or carers in their usual home environment to set up the new intervention. Oxygen saturations, heart and breathing rates will be taken for each child whilst in their usual sitting and sleep position, followed by the new position. This is to ensure that the new position does not cause any respiratory adverse effects. CYPCN will then trial the new position at home during the day for a minimum of 1 hour per day for at least a week. This is to determine the safety and comfort of the new position, and effectiveness of upper airway drainage, prior to night-time implementation. Individualised written positioning guidance with photographs and training of parents or carers wil
Children will be invited to participate in the RCT if they meet the following criteria: 1. Dependent upon others to position/move their bodies (Gross Motor Function Classification System IV/V or equivalent) 2. High risk of aspiration linked to swallowing difficulties (Eating and Drinking Classification System IV/V) 3. Aged 2-18 years 4. Fed via gastrostomy/jejunostomy 5. At least one lower respiratory tract infection requiring antibiotics in past 12 months For the surveys, stakeholders will be invited to participate if they are: 1. Parents of children in the RCT 2. Children in the intervention group 3. Healthcare professionals who have been involved in the RCT
1. CYPCN using naso-gastric tube 2. CYPCN with overnight feeding via gastrostomy that cannot be altered to daytime only (jejunostomy feeds can continue overnight so considered safe) 3. CYPCN transitioning to adult care within trial period 4. CYPCN with planned orthopaedic surgery during trial period