Thank you very much for considering participation in this pilot project for the ECFS (European CF Society) Physiotherapy Group. This process is aimed at finding the correct questions to ask as part of an international questionnaire to aid the projection of Physiotherapy services in CF into the future – but also the education needed internationally to develop the service of the future. We need to know, what kind of questions you think are important to ask PWCF to ascertain what you want from us – your CF physiotherapist into the future.
Project aim – to gather the views of people with CF on what they want from CF physiotherapy services.
Project steps
- Stakeholder meetings with international participants
- Aim to complete this stage by the end of January 2024
- To engage 6-10 people with CF/parents of children with CF in this stage.
- At least one PWCF on the panel not eligible for access to modulator.
Stakeholder meeting questions/conversation starters
- What personal details or demographics would be helpful for us to collect?
- What does your physiotherapy routine look like at present?
- Has this changed at all recently?
- If applicable – has taking CFTR modulators made a difference to what you complete for physiotherapy?
- What should we ask about airway clearance/chest physiotherapy?
- What should we ask about exercise? And exercise testing?
- What should we ask about nebulisers and inhalers?
- What should we ask about MSK issues?
- What else should we ask about?
- What locations would you wish to be able to access physiotherapy through in the future e.g. face to face appointments or virtual/video reviews?
- What would you like from your physiotherapy reviews in the future?
Clare Reilly, Senior Physio SVUH will be holding a focus group meeting virtually to start these conversations. The content of the meeting shall be transcribed and this transcription will be used to report back to the PhysioSIIG the themes raised. Clare is also hoping to take minutes within the meeting as a back up. If you would like to register your interest in the focus group, please click here: https://www.smartsurvey.co.uk/s/PhysIIGfocusgroupregistration/