Howland Samantha, Fisher Kay
Pfizer Ltd, Walton Oaks, Dorking Road, Tadworth, Surrey KT20 7NS UK.
Experience Engineers, Chalfont St Peter, Bucks, UK.
Springerplus. 2015 Mar 5;4:111. doi: 10.1186/s40064-015-0888-8. eCollection 2015.
We describe a qualitative study to establish the emerging needs of young people with juvenile idiopathic arthritis (JIA) as they go through the transition process, identifying which elements are valued and where support gaps exist. Qualitative interviews with healthcare professionals, young people with JIA and their parents explored the lived experience of transition to care in an adult rheumatology clinic. Perspectives of the experience and reflections of the process of transitioning were captured along with the young people's views of optimal support. Service provision in the clinical environment varied. Service design for this particular patient group has an impact on how young people optimise management of, and engagement with, their condition during young adulthood. Two specific themes emerged that had the greatest impact on defining a positive user experience of transitioning care: tailored service provision within the clinical environment and support for those living with JIA beyond the clinic doors (we have termed these the lived experience). Factors of importance to young people with JIA were grouped into key domains, namely: day-to-day life with JIA, emotional and developmental factors and a desire for independence. The young people and healthcare professionals interviewed in this small qualitative study highlighted some common themes considered critical in the development and organisation of an excellent care pathway from paediatric to adult healthcare. Aligning the clinical process with young people's individual needs and lifestyle creates stronger beginnings in adult care.
我们描述了一项定性研究，以确定患有幼年特发性关节炎（JIA）的年轻人在经历过渡过程时新出现的需求，确定哪些要素受到重视以及存在哪些支持差距。对医疗保健专业人员、患有JIA的年轻人及其父母进行的定性访谈，探讨了在成人风湿病诊所过渡到护理的实际经历。记录了对过渡经历的看法和对过渡过程的反思，以及年轻人对最佳支持的看法。临床环境中的服务提供各不相同。针对这一特定患者群体的服务设计，会影响年轻人在成年期如何优化对自身病情的管理以及参与度。出现了两个对定义积极的过渡护理用户体验影响最大的特定主题：临床环境中的定制服务提供，以及诊所之外对患有JIA的患者的支持（我们将这些称为实际经历）。对患有JIA的年轻人重要的因素被归纳为关键领域，即：JIA患者的日常生活、情感和发育因素以及对独立的渴望。在这项小型定性研究中接受访谈的年轻人和医疗保健专业人员强调了一些共同主题，这些主题在从儿科到成人医疗保健的优质护理路径的制定和组织中被认为至关重要。使临床过程与年轻人的个人需求和生活方式相契合，能为成人护理创造更好的开端。
