For parents and carers of children with CF, the burden of care is significant .
For all patients with CF physiotherapy – which takes 20-60 minutes every day – is the most time-consuming treatment activity. Parents or carers need to provide a lot of encouragement to children to start, and complete, each physio session. Daily life for a family managing CF was illustrated very clearly by the BBC2 television programme ‘Big Life Fix’ broadcast Dec 2016. (Will Jackson was a volunteer participant in the 48 hour ‘hackathon for lung health’, held by the TV production company.)
Anecdotal evidence from parents of children with CF indicates that compliance with regular physiotherapy is extremely demanding for everyone involved. Encouraging your child to complete good quality, twice daily treatment requires almost superhuman levels of energy, enthusiasm and stamina.
Devices commonly used for respiratory physiotherapy are relatively simple mechanical products. They don’t provide user feedback to confirm correct technique, or indicate when each blow is completed, and patients and families have limited face-to-face time with physiotherapists to check technique. As a result, children, parents and carers lack confidence in their physiotherapy treatment.
Together, these factors create uncertainty, frustration, stress and conflict at home.