Cystic Fibrosis, Family

SCooP- Supporting Children’s Physiotherapy for cystic fibrosis

Rob, Joseph and I are taking part in a study called SCooP run by Stirling University about physiotherapy for cystic fibrosis. The aim of the project is to help develop a short film for parents and carers of young children who have CF- it will help them to understand the importance of physiotherapy and give them advice and support on how to combat the difficulties they and their child may face when undertaking physiotherapy as treatment for CF.

Why is this project being carried out?

Chest physiotherapy (CPT) for children with CF involves a number of physically demanding and uncomfortable techniques carried out at home by the parent or carer. The aim of CPT is to minimise lung damage but it can only help if it is done on a routine basis. The earlier the treatment is started the more likely it will become a normalised part of the child’s routine. The film hopefully will make a difference to a parents knowledge and confidence in doing CPT, help make it less distressing for the child and encourage families to stick to doing their CPT.

We are taking part to help develop the resource (film and coping plan) which is being developed at the NMAHP-RU- Nursing, midwifery and allied health professionals Research Unit at the University of Stirling.

We are part of on online research group along with up to 20 other parents and professionals to help develop the resource. We will contribute over an 8 month period by giving our opinion on materials and resources, answering questions about our families experiences with CPT, use materials and resources that the study provides and test them out in our own routine and feedback on our experiences- we will be asked to try out new ideas for sticking with CPT shown on a storyboard and to keep a short diary of our families experience of using them.

I was shocked to discover that not all parents keep up with the CPT needed for their childs survival:

“Chest physiotherapy and airway clearance techniques are a major part of the daily treatment to clear the lungs and airways. Although chest physiotherapy is important, only 50% of parents and children keep to their recommended physiotherapy routine.  Parents and carers and their young children find it difficult to stick to their physiotherapy routine for a wide range of reasons, for example, it makes children feel ‘different’ from their friends and they find it boring and sometimes painful and uncomfortable.”

If you are interested in taking part you can find out more information about the study and how to take part here.

The study is funded by the Chief Scientist Office and the Cystic Fibrosis Trust. It is being carried out by the NMAHP Research Unit, University of Stirling, in partnership with the Cystic Fibrosis Trust, NHS Lothian, and the Universities of Dundee, Aberdeen and New South Wales (Australia), Glasgow Caledonian University, and University College London.

 

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