School of Psychology, Institute for Population Health, University of Liverpool, Liverpool, UK.
Faculty of Medicine, Imperial College, National Heart and Lung Institute, Royal Brompton Harefield NHS Foundation Trust, London, UK.
Pediatr Pulmonol. 2023 Jul;58(7):1993-1999. doi: 10.1002/ppul.26423. Epub 2023 Apr 21.
Interstitial lung disease in childhood (chILD) is rare and no longer purely a childhood issue as many survive into adulthood, and so have to transition from pediatric to adult healthcare services. Transition is a significant life event that has the potential to impact on physical and mental health outcomes. The European Respiratory Society (ERS) statement on chILD transition highlighted the lack of standardised transition services for chILD transition resulting in a haphazard process. 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 exploring if there were any information packs or support provided for the transition. Such support may be generic, such as "Ready Steady Go" which provides a systematic approach to transition and disease-specific literature. These latter have not been developed for ILD. Data were analysed by constructivist grounded theory. We present a lived experience of transition with themes of lack of transition preparation and planning, challenges of adapting 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, learning medical terminology, and reaching out for support.
儿童间质性肺疾病（chILD）较为罕见，而且不再纯粹是儿童问题，因为许多患儿能存活至成年期，因此必须从儿科过渡到成人保健服务。过渡是一个重要的生活事件，有可能对身心健康结果产生影响。欧洲呼吸学会（ERS）关于 chILD 过渡的声明强调了缺乏针对 chILD 过渡的标准化过渡服务，导致过渡过程随意。本定性研究探讨了英国的年轻人和父母在 chILD 过渡期间从儿科到成人保健服务的体验。参与者（n=7）从 chILD 患者组织和在线社区招募。我们专注于过渡体验，探讨是否有任何信息包或支持提供给过渡。这种支持可能是通用的，例如“Ready Steady Go”，它提供了一种系统的过渡方法和特定于疾病的文献。这些后者尚未针对ILD 开发。数据通过建构主义扎根理论进行分析。我们展示了过渡的生活体验，主题包括缺乏过渡准备和规划、适应成人服务的挑战，以及医疗保健场景的变化。由于 chILD 的复杂性，父母讨论了他们需要部分保留作为年轻人的倡导者。受访者提出了如何改进过渡的建议，以及对刚进入过渡过程的年轻人的建议，包括了解自身状况、学习医学术语以及寻求支持。
