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Experiences of UK-based adult transition services for Interstitial Lung Disease in childhood: “There’s a lot less cushioning”
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  • Carlee Gilbert,
  • Kate M. Bennett,
  • Christopher Brown,
  • Andrew Bush
Carlee Gilbert
University of Liverpool Institute of Population Health

Corresponding Author:[email protected]

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Kate M. Bennett
University of Liverpool Institute of Population Health
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Christopher Brown
University of Liverpool Institute of Population Health
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Andrew Bush
Imperial College London National Heart and Lung Institute
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Interstitial Lung Disease in childhood (chILD) is rare and no longer solely a childhood issue. Many are surviving into adult life. Therefore, many affected with chILD need to transition from paediatric to adult healthcare services. Transition is a significant life event that has the potential to impact on physical and mental health outcomes and across Europe this is a haphazard process for chILD. This qualitative study explores how young people and parents in the United Kingdom experienced transition from paediatric to adult healthcare services for chILD. Participants (n = 7) were recruited from chILD patient organisations and online communities. We focused on the experience of transition and whether there were any information packs or support provided for the transition. The data was analysed by constructivist grounded theory. The study presents a lived experience of transition with themes of lack of transition preparation and planning, challenges of learning how to adapt to adult services and a changing healthcare scene. Due to the complexity of ChILD, parents discussed their need to remain, in part, as an advocate for the young person. Respondents provided recommendations for how transition could be improved along with tips for young people who are new to the transition process, which include educating oneself about the condition and learning medical terminology, being open if there are issues and reaching out for support.
16 Dec 2022Submitted to Pediatric Pulmonology
17 Dec 2022Submission Checks Completed
17 Dec 2022Assigned to Editor
17 Dec 2022Review(s) Completed, Editorial Evaluation Pending
22 Dec 2022Reviewer(s) Assigned
10 Feb 2023Editorial Decision: Revise Major
10 Mar 20231st Revision Received
10 Mar 2023Submission Checks Completed
10 Mar 2023Assigned to Editor
10 Mar 2023Review(s) Completed, Editorial Evaluation Pending
10 Mar 2023Reviewer(s) Assigned
31 Mar 2023Editorial Decision: Accept