'No man's land': the journey of young adults with complex care needs, from paediatric to adult healthcare.

Background: 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.

Aims: To identify the challenges faced by young people with complex health needs in the transition journey from their perspective.

Methods: 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.

Results: 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.

Conclusion: 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.