Cady Rhonda G, Bahr Tori, Au-Yeung Carrie, Kinoglu Sera, Lutz Megan, Jankowski Mark
Research Department, Gillette Children's, St. Paul, MN, USA.
Pediatric Medicine, Gillette Children's, St. Paul, MN, USA.
Health Care Transit. 2024 Sep 7;2:100070. doi: 10.1016/j.hctj.2024.100070. eCollection 2024.
Transition from pediatric to adult healthcare and services is an important event in the life course of all youth, including youth living with medical complexity. Data from the National Survey of Children's Health indicates less than 20 % of youth receive health care transition services. The goal of our study was understanding the support, tools and resources that facilitate successful health care transition of young adults living with medical complexity.
Young adults living with medical complexity and their parents shared their lived experience of 'what worked' and 'what is needed' for successful health care transition during focus group sessions. Content analysis of transcripts used an iterative and deductive approach guided by a priori themes.
The voices of ten young adults and fourteen parents were shared during three virtual focus group sessions. They described health care transition (HCT) as an individualized process with success relying on consistent, clearly-defined and systemwide guidelines and resources. Moving from pediatric/family-focused care to adult/patient-focused care requires increased self-management and young adults often felt under-prepared for this role. Support from formal transition coordinators would improve communication between the multiple health, county/state agency and education systems involved during the transition period.
Understanding the support, tools, and resources specifically needed by young adults with medical complexity for successful pediatric to adult health care transition is a critical first step in addressing the documented lack of transition services for this vulnerable population. This includes formal peer support programs for young adults with medical complexity and their parents.
从儿科医疗服务向成人医疗服务的过渡是所有青少年生命历程中的一个重要事件，包括患有复杂疾病的青少年。全国儿童健康调查数据显示，不到20%的青少年接受过医疗服务过渡支持。我们研究的目的是了解有助于患有复杂疾病的年轻成年人成功实现医疗服务过渡的支持、工具和资源。
患有复杂疾病的年轻成年人及其父母在焦点小组讨论中分享了他们对于成功实现医疗服务过渡“哪些措施有效”以及“需要什么”的实际经历。对访谈记录进行内容分析时采用了由先验主题指导的迭代和演绎方法。
在三场虚拟焦点小组讨论中，听取了10名年轻成年人和14名家长的意见。他们将医疗服务过渡（HCT）描述为一个个性化过程，成功依赖于一致、明确且全系统的指导方针和资源。从以儿科/家庭为重点的护理转向以成人/患者为重点的护理需要增强自我管理能力，而年轻成年人往往觉得自己对此准备不足。正式过渡协调员的支持将改善过渡期间涉及的多个医疗、县/州机构和教育系统之间的沟通。
了解患有复杂疾病的年轻成年人成功从儿科向成人医疗服务过渡具体所需的支持、工具和资源，是解决这一弱势群体过渡服务记录不足问题的关键第一步。这包括为患有复杂疾病的年轻成年人及其父母提供正式的同伴支持项目。
