Providing care coordination to children with medical complexity in rural New south Wales: implementation experiences from four local health districts

Introduction: Limited care coordination and planning for children living with medical complexity (CMC) leads to missed and duplicated care, increasing costs for the health system and families compounded by living rurally, necessitating enhanced local solutions.

Intervention: The Rural Kids Guided Personalised Service (RuralKidsGPS) is an integrated model of care coordination currently being implemented in four rural local health districts across New South Wales and modelled on the KidsGPS program in tertiary children’s hospitals in Sydney. RuralKidsGPS aims to smooth pathways through healthcare by connecting CMC to local health services, coordinating care and care teams, and building families’ capacity for self-management.

Aims: This study aims to explore barriers and enablers to implementation by analysing the experiences of staff delivering RuralKidsGPS, and referring to the services, during implementation to inform future implementation and contextual adaption plans for scaling the model across diverse health settings.

Methods: The implementation evaluation is informed by qualitative methods using semi-structured interviews with nurse coordinators (n=7), healthcare professionals (n=12), health managers (n=5) and embedded researchers (n=4). Underpinned by the Consolidated Framework for Implementation Research (CFIR), thematic analysis was conducted using a hybrid deductive/inductive approach to identify barriers and facilitators as experienced by staff involved in implementation.

Results: The key emergent themes highlight the significance of local context, efficient processes, strong leadership, and appropriate resources as fundamental to acceptability, implementation, and sustainable delivery of RuralKidsGPS. A strong commitment of the nurse coordinators ‘building clinical relationships around the family’ to optimise care quality, experiences, and equity of access for families with CMC was a central theme. Resourcefulness, local knowledge, and ability to leverage local resources and networks within health, social care, and disability systems, enabled delivery of family-centred care across diverse socio-economic and cultural backgrounds. However, the timely implementation and delivery of RuralKidsGPS care coordination has been impacted by limited sharing of healthcare information across jurisdictions, natural disasters (widespread floods) and changes of key staff involved in the implementation. Invaluable support and leadership from local healthcare managers and professionals, enabled nurse coordinators to adapt and implement RuralKidsGPS to fit within their local context. Delivery of the model was hampered by limited care coordinator time and geographical isolation which increased a feeling of professional isolation among coordinators. Staff involved in the implementation, flagged concerns about managing service demand considering the high levels of psychosocial and medical complexity among children and families. Therefore, ensuring adequate service resourcing, streamlining workflows, and empowering families to navigate healthcare were significant challenges, whilst recognising that these factors are crucial for model adoption and sustainability.

Conclusion: Findings emphasise the significance of adapting integrated models of care to local contexts, and the importance of building co-designed pathways and processes, strong support networks, and trusting relationships to enable team-based interdisciplinary care coordination for CMC. Building capacity of families to navigate complex healthcare systems and to enable self-management where possible, are crucial for managing demand on RuralKidsGPS and its sustainability.

This presentation will outline the barriers and enablers to implementation from the experiences of staff delivering RuralKidsGPS, and those referring to the service, during implementation. We will reflect on how this information will help inform future implementation and contextual adaption plans for scaling the model across diverse health settings.