Factors relevant to physio adherence in children/young people with PCD
Research type
Research Study
Full title
What factors are relevant to adherence to physiotherapy and airway clearance techniques in children and young people with primary ciliary dyskinesia? A qualitative study
IRAS ID
351280
Contact name
Evie Robson
Contact email
Sponsor organisation
University of Leeds
Duration of Study in the UK
0 years, 6 months, 4 days
Research summary
Primary ciliary dyskinesia (PCD) is a rare genetic condition that primarily affects the airways and lungs. The main outcome is impaired clearance of mucus from the lungs, which leads to repeated airway infections and damage to lung structure, namely bronchiectasis. Regular preventative chest physiotherapy is a key management strategy. If PCD is well-managed, lung function and progression of bronchiectasis can be stabilised. Adherence to preventative physiotherapy can be challenging for children and young people and their families, with limited previous study exploring relevant factors. This study will explore the attitudes, beliefs and practices of children and young people aged 13-to-19-years regarding their physiotherapy. It will aim to identify factors that are enablers or barriers to performing physiotherapy, and consider which children and young people may be at risk for poor adherence. From this, possible changes to physiotherapy approaches may be suggested.
Information will be gathered from focus groups conducted with children and young people who are on Leeds Teaching Hospitals NHS Trust child and adult PCD service patient registers. A target of 12-15 participants will be included across 2-3 focus groups. Using pre-formed questions and prompts to help guide the sessions, the focus groups will be conducted over video conference software with audio and video recording. Following completion, the focus group discussion audio will be transcribed with thematic analysis to determine factors that may relevant to physiotherapy adherence. Anonymous quotations from focus group discussion will be presented to further illustrate relevant factors. The findings from the study will be anonymised and written up and submitted for a Masters in Child Health degree at University of Leeds.
REC name
Yorkshire & The Humber - Bradford Leeds Research Ethics Committee
REC reference
25/YH/0084
Date of REC Opinion
29 Apr 2025
REC opinion
Favourable Opinion