Health care transition experiences of young adults with medical complexity

Rhonda G. Cady , Tori Bahr , Carrie Au-Yeung , Sera Kinoglu , Megan Lutz , Mark Jankowski
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Abstract

Background

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.

Methods

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.

Findings

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.

Conclusions

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.

病情复杂的年轻成年人的医疗过渡经历
背景从儿科医疗保健和服务过渡到成人医疗保健和服务是所有青少年(包括患有复杂疾病的青少年)生命历程中的一件大事。全国儿童健康调查的数据显示,只有不到 20% 的青少年接受过医疗保健过渡服务。我们的研究目标是了解能促进患有医疗复杂性疾病的青少年成功过渡到医疗保健服务的支持、工具和资源。方法患有医疗复杂性疾病的青少年及其父母在焦点小组会议上分享了他们的生活经验,即成功过渡到医疗保健服务 "可行的方法 "和 "需要的方法"。在先验主题的指导下,采用迭代和演绎的方法对记录内容进行分析。研究结果在三次虚拟焦点小组会议中,十位年轻人和十四位家长分享了他们的心声。他们将医疗保健过渡(HCT)描述为一个个性化的过程,成功与否取决于一致的、定义明确的、全系统的指导方针和资源。从以儿科/家庭为中心的护理转变为以成人/病人为中心的护理,需要加强自我管理,而年轻的成年人往往感到对这一角色准备不足。正式过渡协调员的支持将改善过渡时期所涉及的多个卫生、县/州机构和教育系统之间的沟通。结论了解具有医疗复杂性的年轻成年人在从儿科成功过渡到成人医疗保健过程中特别需要的支持、工具和资源,是解决记录在案的这一弱势群体缺乏过渡服务问题的关键性第一步。这包括为有医疗复杂性的年轻成年人及其父母提供正式的同伴支持计划。
本文章由计算机程序翻译,如有差异,请以英文原文为准。
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