“Okay, you’re moving to the adult world”: perspectives on transitioning users of home mechanical ventilation to adult care

RATIONALE: Children requiring long-term home mechanical ventilation (HMV) increasingly survive into adulthood. However, structured processes to support their transition from pediatric to adult care are lacking. Understanding the perspectives of patients, caregivers, and health and social care providers (HSCP) is critical to improving transition experiences and outcomes. OBJECTIVES: To explore the experiences, perceptions, and priorities of patients, caregivers, and providers involved in the transition of young people using HMV from pediatric to adult care, and to identify practical targets for improvement. METHODS: We conducted semi-structured interviews and focus groups with the following participant groups: pediatric and adult HSCP (n = 14), patients aged 17-21 with experience of HMV (n = 7), and their caregivers (n = 9). Iterative inductive thematic analysis was performed. Patient partners with lived experience contributed to study design, development of data collection tools, and analysis. RESULTS: Four key themes emerged. (1) The absence of a formal transition framework left patients and caregivers unclear about expectations, timelines, and responsibilities. (2) Care continuity and coordination were often disrupted, with prolonged gaps between pediatric and adult care, and confusion over roles of providers. (3) Patients were insufficiently prepared for differences in adult care, including greater self-management expectations. (4) Providers reported systemic barriers, including lack of institutional support, insufficient resources, and over-reliance on individual "transition champions" to drive processes. These challenges were consistently reported across participant groups. CONCLUSIONS: Young people using HMV face significant challenges during and after their transition to adult care. Priorities for improvement include the need for structured transition protocols, early planning, education about adult care expectations, and formalized handovers between services. Sustainable improvements require operational support and integration of transition planning into routine care from early adolescence. Future research should evaluate the impact of formalized transition models on patient experiences and outcomes.