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Moving from paediatric to adult care: resources to support transition
Journal of Cystic Fibrosis ; 20:S114, 2021.
Article in English | EMBASE | ID: covidwho-1735132
ABSTRACT

Objectives:

The objective of this project was to develop new transition resources to support young people with cystic fibrosis (CF) and their families during a time that can be detrimental to health and well-being, and equip them with the skills needed to have a successful and supported transition.

Methods:

The Cystic Fibrosis Trust consulted with over 30 young people with CF and their parents to hear about their experiences of transition.We found that, overall, young people were excited about the opportunity for independence,while parents had reservations about passing responsibility onto their children. Parents and young people, the Trust’s Youth Advisory Group and Clinical Advisory Group, and a young key worker in CF paediatrics gave feedback on a proposal for the resources, and reviewed the resources through development and production. All feedback was shared with a design agency, who created designs for the resources. Due to restrictions around Covid-19, instead of using photography, the agency created illustrations and animations, using the tagline ‘Wewant you to feel listened to and empowered, whatever shape it takes!’ to represent the changes families go through during transition. The final resources include a booklet for young people and four activity sheets, a booklet for parents and carers, and an interactive ‘hub’ on the Trust’s website.

Results:

The resources were published and promoted in December 2020. Since their release, the resources have been ordered 76 times, and downloaded over 245 times. Feedback on the resources has been positive, and parents have shared their experiences of the challenges this time brought up for their families.

Conclusion:

Transition is a challenging time for young people with CF and their families. Our new resources make up-to-date information about the transition process available to the people who need it. The resources are available in different formats, and the information is bespoke to the audience reading it.
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Full text: Available Collection: Databases of international organizations Database: EMBASE Language: English Journal: Journal of Cystic Fibrosis Year: 2021 Document Type: Article

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Full text: Available Collection: Databases of international organizations Database: EMBASE Language: English Journal: Journal of Cystic Fibrosis Year: 2021 Document Type: Article