Family and health professional perspectives of the CHD LIFE cardiac developmental long-term care pathway: a qualitative evaluation

The CHD LIFE care pathway demonstrates the feasibility and acceptability of a decentralized neurodevelopmental follow-up model for children with congenital heart disease, reducing geographic and logistical barriers while promoting family-centered care. Findings contribute to the discourse around alternative care models, highlighting the barriers, enablers, and impacts of decentralized care implementation. The study also highlights the need for structured support systems, ongoing provider engagement, and more standardized processes to ensure equitable and sustainable care delivery. This work informs future policy and practice, offering a scalable model for cardiac neurodevelopmental follow-up, which may potentially be adaptable to other healthcare contexts.