Acceptability and feasibility of a novel postural management night-time intervention to improve respiratory health of children and young people with complex neurodisability (Breathe-Easy): proof of concept study

Abstract

Objectives: Children and young people with complex neurodisability (CYPCN) are at high risk of respiratory illness, frequent hospital admissions and premature death. This study aimed to test the acceptability and feasibility of Breathe-Easy, a novel night-time postural intervention to improve respiratory health in CYPCN.

Design: Case series design incorporating a pre-post interventional study and qualitative study.

Setting: Intervention conducted at home by parents/carers.

Participants: CYPCN aged 2 to 18 years, dependent on others to move, swallowing difficulties, gastrostomy/jejunostomy, and under care of a respiratory paediatrician.

Intervention: Breathe-Easy protocol included CYPCN lying on a flat bed, three-quarters prone or side-lying using existing night-time positioning equipment. A bile-bag was used to minimise reflux. CYPCN trialled intervention for 6 months.

Main outcome measures: Measures of respiratory health and sleep were collected at baseline, three and six months. Semi-structured interviews were conducted with parents, CYPCN, and healthcare professionals post intervention. Data analysis comprised descriptive statistics and thematic analysis.

Results: Eleven CYPCN were recruited; eight completed the trial. We interviewed 5 CYPCN, 9 parents, 8 healthcare professionals, 6 carers and one teaching assistant. Positive views were expressed regarding sleep quality, breathing, secretion management and reduced hospitalisation. Overall improvement in respiratory health and sleep measures. All eight participants planned to continue with Breathe-Easy.

Conclusion: Breathe-Easy appears acceptable and feasible. Further research will need to evaluate feasibility of implementation by other teams and families, and any impact on progressive musculoskeletal deformity, including addressing methodological challenges gathering key outcomes and adverse events. CONTRIBUTION OF THE PAPER.

Keywords: Children; Complex neurodisability; Night-time positioning; Postural management; Respiratory health; Sleep; Swallowing difficulties.