Supporting the Advancement of a National Agenda for Pediatric Healthcare Reform: A multi-year Evaluation of a Leadership Education in Neurodevelopmental and Related Disabilities Program.

Abstract

Objectives: To evaluate the implementation and sustainability of the effect of a 1-year Leadership in Education for Neurodevelopmental and related Disabilities (LEND) program in a southeastern state, and to examine its impact on advancing the Maternal Child Health Bureau's (MCHB) Blueprint for Change-a national agenda for pediatric healthcare reform.

Methods: This study applies the Exploration, Preparation, Implementation, and Sustainment (EPIS) framework to rigorously evaluate LEND implementation and impact between 2018 and 2022. In-depth interviews (N = 24) were conducted among long-term (1-year) LEND trainees, via Zoom, in a southeastern state. A hybrid approach of deductive and inductive thematic analysis was conducted to identify emergent patterns and themes from trainees' experiences, related to the EPIS constructs and national priorities.

Results: Exploration and Preparation. Trainees identified insights from multidisciplinary discussions and family panels as key facilitators to their development.

Implementation: Trainees reported growth in confidence and communication and improving their service delivery, including implementation of a collaborative approach to patient care, family-centered care, and occasionally facilitating their obtainment of leadership positions. Trainees also reported systemic barriers to implementation, including time and financial constraints. Sustainability. Trainees identify their experienced shift in mindset and statewide connections as drivers for sustained change, with suggestions for follow-up events and networking opportunities to enhance the effect of LEND training.

Conclusions for practice: These results may inform LEND objectives to enhance the statewide network and to advance a national framework for prioritizing family well-being and quality of life and access to services.