This research concerns children with complex neurodisability. Damage to the developing brain leads to lifelong disturbances in motor control, seizures, cognition, communication, eating and drinking, and behaviour. Children with complex neurodisability are dependent upon others to move and position them. Children commonly experience chronic lung disease, leading to frequent hospitalisation, medical interventions and premature death. Respiratory illness may be triggered by aspiration, i.e. when saliva, food, liquid or stomach contents enter the lungs. Aspiration risks increase at night-time when supervision is limited and children are positioned on their backs. Some children experience repeated breathing complications requiring prolonged hospital stays, including respiratory support in intensive care.

Consultant Respiratory Paediatrician Akshat Kapur and Physiotherapist Hilda Perry developed a new night-time intervention to improve respiratory health of children with complex neurodisability. Dr Kapur and his team have found that this intervention can help reduce respiratory illness and time spent in hospital for some children. This is an acceptability and feasibility study which means we want to find out if this new intervention is something that children with complex neurodisability and their families are happy (i.e. it is acceptable) and able (i.e. it is feasible) to do. If so, a larger future research study can be designed to find out if the intervention works to improve the respiratory health of children with complex neurodisability.

The intervention involves positioning children safely on their fronts in a semi-sidelying position using pillows to support the body under the shoulder and hip, and with the head slightly lowered so that gravity can help drain secretions from the mouth. This is different to current night-time positioning recommendations of either lying children on their backs or side. The new intervention also involves, where possible, the draining of children's stomach contents overnight via an existing feeding tube to prevent aspiration of stomach contents.

We will work closely with 10 children with complex neurodisability, along with their families and health professionals, as we introduce this new night-time intervention. We will make observations about children’s respiratory and sleep outcomes before and after making changes. We will make comparisons using questionnaires, sleep diaries, records of antibiotic use and hospital admissions. We will collect this information before making any changes, at three months after the intervention has been established and after six months, when the study ends. We will talk to children, parents, carers and relevant health professionals to find out what they think and feel about the new intervention, including any issues/challenges that occurred.

We will record how many children and families were approached to take part in the study. We will record how many agreed to take part, how many chose to leave half way through and how many said they did not want to take part in the study. Families who discontinued or who declined the intervention will be given opportunity to provide feedback confidentially.

Children with complex neurodisability and their families will be invited to take part if the children:

• Depend upon others to position/move their bodies
• Have swallowing difficulties and a high risk of aspiration
• Are aged 2-18 years
• Have gastrostomy or jejunostomy
• Are receiving care from a Consultant Respiratory Paediatrician from Royal Alexandra Children's Hospital in Brighton because of chest infections

The following people will be invited to take part in interviews:

• Parents offered the intervention for their children
• Children with complex neurodisability aged 5-18 years
• Healthcare professionals involved in routine care of children with complex neurodisability and in the intervention setup

We will use the findings to decide whether it is feasible and acceptable to children and families to run a research trial of this new night-time intervention. The data will help us to design a future research trial.

Who are the research team?

The research is being led by Dr Sarah Crombie, an experienced Research Physiotherapist. Other members of the team include:

• Dr Diane Sellers, Research Speech and Language Therapist
• Dr Jessica Baskerville, Clinical Researcher
• Ms Gaby Hillman, Paediatric Physiotherapist (neuro-disability and respiratory)
• Dr Akshat Kapur, Consultant Respiratory Paediatrician
• Professor Stephen Bremner, Senior Statistician, Brighton and Sussex Medical School
• Professor Chris Morris, Peninsula Child Health Research Unit, University of Exeter

Contact

Dr Sarah Crombie, Project Lead

Chailey Clinical Services, Beggars Wood Road, North Chailey, near Lewes. BN8 4JN

sc-tr.breathe-easy@nhs.net, 01825 722112