Problems and solutions: Accounts by parents and children of adhering to chest physiotherapy for cystic fibrosis

Abstract

Purpose. Although chest physiotherapy is central to the management of cystic fibrosis (CF), adherence among children is problematic. This study explores accounts by parents and children of the difficulties of adhering to chest physiotherapy for cystic fibrosis, and identifies strategies used by families to overcome these.

Methods. A qualitative study based on in-depth interviews with 32 children with a diagnosis of cystic fibrosis aged 7 – 17 years, and with 31 parents.

Results. Physiotherapy was frequently described as restrictive, threatening to identity and boring, giving rise to feelings of unfairness, inequality, ‘difference’, and social stigma. Motivation to adhere was influenced by perceptions of effectiveness that depended on external signs evident during or after the physiotherapy. Motivation was enhanced where parents and children visualized the accumulation of mucus. Some parents had developed distraction techniques that improved the experience of chest physiotherapy but had few opportunities to share these with other parents.

Conclusion. The experience of physiotherapy is problematic to some parents and children. Furthermore, motivation to overcome these problems may be undermined by perceptions of ineffectiveness. Distraction techniques that change the value that the child places on the time spent doing physiotherapy and that reduces their perception of its duration may improve experience and adherence. The potential of visualization techniques to promote adherence should be investigated further.

Keywords:

• Cystic fibrosis
• adherence
• compliance
• children
• coping
• parents