Lesson learned: Implementation of a rural paediatric care coordination service for children with medical complexity in New South Wales, Australia

Introduction: Children living with medical complexity (CMC) in rural areas without care coordination commonly experience difficulties accessing care and missed and/or duplicated care resulting in poorer health outcomes and greater costs for their families and the health system. Intervention: The Rural Kids Guided Personalised Service (RuralKidsGPS) is a co-designed integrated model of care coordination implemented in four rural local health districts in New South Wales, Australia (1). Modelled on the KidsGPS program based in tertiary children’s hospitals in Sydney (2). RuralKidsGPS aims to help families navigate healthcare by connecting CMC to local health services, coordinating care and care teams, and building families’ capacity for care navigation and self-management. Aims: This study aims to: a)describe the characteristics and care coordination needs of children and families accessing RuralKidsGPS and, b)understand the barriers and enablers impacting the planning and implementation of RuralKidsGPS. Methods: The impact evaluation examined children’s demographic profiles, Index of Relative Socioeconomic Advantage, diagnostic classifications, and the complexity of care coordination required. Qualitative semi-structured interviews with nurse coordinators (n=11), healthcare professionals (n=13), health managers (n=7), embedded researchers (n=4) and one focus group informed the implementation evaluation. Thematic analysis underpinned by the Consolidated Framework for Implementation Research, adopted a hybrid deductive/inductive approach to identify barriers and enablers experienced in the planning and implementation of RuralKidsGPS. Results: Preliminary results found 429 CMC enrolled in RuralKidsGPS, 71% required high level care coordination across local, primary, and tertiary care, 62% of children were socioeconomically disadvantaged and 27.5% identified as priority populations. The key emergent themes from the implementation evaluation highlight the need to understand local context at the planning stages, as well as identifying strategies to build and leverage work infrastructure, efficient workflows, and relationships, and defining care coordinator roles and responsibilities. Whilst strong leadership, strengthening partnerships, team working, and tailoring strategies to context are fundamental to adoption and sustainable delivery of RuralKidsGPS. Sectoral siloes and cross border jurisdictions created barriers for information sharing, collaborative working practices and service efficiency. This was further compounded by high levels of psychosocial and medical complexity among children and families. Other barriers included lack of interconnected processes and information sharing platforms needed for effective and sustainable multisectoral collaborations and service delivery within local contexts. Implementation was enabled by dedicated care coordinators who leveraged local resources and networks and adapted the model to manage high service demand, limited resourcing, and siloed workflows to optimise families’ access to quality, equitable care. Commitment and support from local leaders, managers and healthcare professionals was another key enabler. Conclusion: Findings emphasise the significance of implementation planning and adapting integrated models of care to local contexts. The building of multisectoral pathways and processes, trusting relationships and providing adequate service resourcing are crucial to successful adoption, sustainability and future scale up of RuralKidsGPS. Building family capacity to navigate complex healthcare systems and self-managed care is crucial for managing demand on RuralKidsGPS and its sustainability. 1 Lingam et al (2023) https://doi.org/10.5334/ijic.7008 2 Breen et al (2018) https://doi.org/10.1186/s12913-018-3553-4

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Publication Details

Journal
International Journal of Integrated Care
Published
2025-04-09
DOI
https://doi.org/10.5334/ijic.icic24209
Primary Topic
Child and Adolescent Health
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article

Lesson learned: Implementation of a rural paediatric care coordination service for children with medical complexity in New South Wales, Australia

Raghu Lingam, Jack Murphy, Yvonne Zurynski, Jeffery Fletcher et al.
International Journal of Integrated Care
Child and Adolescent Health
article

Lesson learned: Implementation of a rural paediatric care coordination service for children with medical complexity in New South Wales, Australia

Raghu Lingam, Jack Murphy, Yvonne Zurynski, Jeffery Fletcher, John Preddy, Hayley Smithers‐Sheedy, Karen Hutchinson, Anne S. De Groot, Micheal Kundukulam
article en

Abstract

Introduction: Children living with medical complexity (CMC) in rural areas without care coordination commonly experience difficulties accessing care and missed and/or duplicated care resulting in poorer health outcomes and greater costs for their families and the health system. Intervention: The Rural Kids Guided Personalised Service (RuralKidsGPS) is a co-designed integrated model of care coordination implemented in four rural local health districts in New South Wales, Australia (1). Modelled on the KidsGPS program based in tertiary children’s hospitals in Sydney (2). RuralKidsGPS aims to help families navigate healthcare by connecting CMC to local health services, coordinating care and care teams, and building families’ capacity for care navigation and self-management. Aims: This study aims to: a)describe the characteristics and care coordination needs of children and families accessing RuralKidsGPS and, b)understand the barriers and enablers impacting the planning and implementation of RuralKidsGPS. Methods: The impact evaluation examined children’s demographic profiles, Index of Relative Socioeconomic Advantage, diagnostic classifications, and the complexity of care coordination required. Qualitative semi-structured interviews with nurse coordinators (n=11), healthcare professionals (n=13), health managers (n=7), embedded researchers (n=4) and one focus group informed the implementation evaluation. Thematic analysis underpinned by the Consolidated Framework for Implementation Research, adopted a hybrid deductive/inductive approach to identify barriers and enablers experienced in the planning and implementation of RuralKidsGPS. Results: Preliminary results found 429 CMC enrolled in RuralKidsGPS, 71% required high level care coordination across local, primary, and tertiary care, 62% of children were socioeconomically disadvantaged and 27.5% identified as priority populations. The key emergent themes from the implementation evaluation highlight the need to understand local context at the planning stages, as well as identifying strategies to build and leverage work infrastructure, efficient workflows, and relationships, and defining care coordinator roles and responsibilities. Whilst strong leadership, strengthening partnerships, team working, and tailoring strategies to context are fundamental to adoption and sustainable delivery of RuralKidsGPS. Sectoral siloes and cross border jurisdictions created barriers for information sharing, collaborative working practices and service efficiency. This was further compounded by high levels of psychosocial and medical complexity among children and families. Other barriers included lack of interconnected processes and information sharing platforms needed for effective and sustainable multisectoral collaborations and service delivery within local contexts. Implementation was enabled by dedicated care coordinators who leveraged local resources and networks and adapted the model to manage high service demand, limited resourcing, and siloed workflows to optimise families’ access to quality, equitable care. Commitment and support from local leaders, managers and healthcare professionals was another key enabler. Conclusion: Findings emphasise the significance of implementation planning and adapting integrated models of care to local contexts. The building of multisectoral pathways and processes, trusting relationships and providing adequate service resourcing are crucial to successful adoption, sustainability and future scale up of RuralKidsGPS. Building family capacity to navigate complex healthcare systems and self-managed care is crucial for managing demand on RuralKidsGPS and its sustainability. 1 Lingam et al (2023) https://doi.org/10.5334/ijic.7008 2 Breen et al (2018) https://doi.org/10.1186/s12913-018-3553-4

International Journal of Integrated CareVol. 25
Openalex Percentile: Top 88%
Child and Adolescent Health
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