Thomas Josephine, Anderson Jemma, Dee-Price Betty-Jean, Kelly Janet, Turpin Kate
Faculty of Health and Medical Sciences, University of Adelaide, Adelaide, South Australia, Australia.
Endocrinology and Diabetes, Women's and Children's Health Network, Adelaide, South Australia, Australia.
Intern Med J. 2025 Jul;55(7):1090-1097. doi: 10.1111/imj.70071. Epub 2025 May 5.
Transition to adulthood can be a challenging time. For people with complex health needs, there is an additional burden of navigating a fragmented healthcare system.
To identify the challenges faced by young people with complex health needs in the transition journey from their perspective.
Health journey mapping (HJM) methodology and semi-structured interviews were utilised to generate rich, detailed narratives. This article focuses on the perspective of patients and families, reporting on thematic analysis of multiple journey narratives during care as a child and through transition to adult healthcare.
Five main themes were identified: transition is a no man's land; the adult health system requires more active navigation; appropriate care is not routine; parent as champion; and healthcare is a hostile environment. In advocating for their unmet needs, the young participants, and their families, were brought into conflict with the healthcare system from early in the journey, an outcome that may harm future healthcare relationships and trust.
Despite existing models and policies, the perception of young adults with complex healthcare needs and their families is that transition from paediatric to adult care can be a hostile process and lacks a consistent structured approach. Transition often occurs against a background of prior negative experiences, exacerbating the adversarial relationship with the healthcare system. This study allows us to hear the voices of healthcare consumers and provides an opportunity to reflect on practice. An informed response by healthcare practitioners to advocacy by patients and families that seeks to reduce conflict may reduce harm and enhance future healthcare relationships and trust across the healthcare system.
向成年期过渡可能是一段充满挑战的时期。对于有复杂健康需求的人来说，还要应对碎片化的医疗体系，这更是一种负担。
从有复杂健康需求的年轻人的角度，确定他们在过渡过程中面临的挑战。
采用健康历程映射（HJM）方法和半结构化访谈来生成丰富、详细的叙述。本文重点关注患者及其家庭的观点，报告对儿童期护理及向成人医疗过渡期间多个历程叙述的主题分析。
确定了五个主要主题：过渡处于无人地带；成人健康系统需要更积极的引导；适当的护理并非常规操作；父母充当拥护者；医疗环境充满敌意。在倡导满足他们未被满足的需求时，年轻参与者及其家人在过渡初期就与医疗系统发生了冲突，这一结果可能会损害未来的医疗关系和信任。
尽管有现有的模式和政策，但有复杂医疗需求的年轻人及其家人认为，从儿科护理过渡到成人护理可能是一个充满敌意的过程，且缺乏一致的结构化方法。过渡往往发生在先前有负面经历的背景下，加剧了与医疗系统的对抗关系。这项研究让我们听到了医疗消费者的声音，并提供了反思实践的机会。医疗从业者对患者及其家人旨在减少冲突的倡导做出明智回应，可能会减少伤害，并加强整个医疗系统未来的医疗关系和信任。
