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

Abstract

This study evaluates the implementation and impact of the Congenital Heart Disease Long-term Improvements in Functional hEalth (CHD LIFE) decentralized care pathway in Australia. It explores perspectives of families and healthcare professionals, identifying key enablers, barriers, and opportunities for improvement. A qualitative evaluation was conducted using semi-structured interviews and reflexive thematic analysis. Purposeful and convenience sampling recruited (a) parents (n = 37) of children with CHD referred for developmental follow-up via the CHD LIFE pathway and (b) key service providers and organizational stakeholders (n = 23). Findings were organized into implementation, perceived impact, and improvement summary domains. Families and providers generally found decentralization of the pathway acceptable and contextually appropriate, but not without challenges. Implementation was enabled by the pathway's co-design, centralized foundations, and system alignment, but challenged by variability in local capacity, provider engagement, and substantial reliance on families. Perceived impacts were noted for providers, parents, and children, including capacity building. Stakeholders identified a range of tangible improvements to enhance equity and sustainability. CHD LIFE presents a promising decentralized, family-centered follow-up model improving access and supporting local care. Strengthening support mechanisms for families and providers remains essential to promote equity, reduce burden, and ensure sustainable implementation across diverse settings. 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.