Abstract
Introduction: Implementation of integrated care for children living with medical complexity (CMC) and their families requires the establishment and support of new roles in the health system.
Background: The Rural Kids Guided Personalised Service (RuralKidsGPS) is a paediatric care coordination service implemented in four Local Health Districts (LHDs) in New South Wales since 2022. RuralKidsGPS is reliant on nurse Paediatric Care Coordinators (PCCs) who provide family-centred care, shared care plans, and link the different teams that wrap around the CMC. At implementation, care coordination services were at different levels of maturity - one LHD had an established service since 2017, another had a service which had been discontinued and re-instated and two LHDs were starting anew. Understanding the experiences of PCCs is crucial for effective integrated care delivery and model sustainability.
Methods: All PCCs were invited to participate in one-on-one qualitative semi-structured interviews at 6 and 12 months after beginning their roles. Ten interviews were conducted, audio-recorded and transcribed verbatim. Transcripts were analysed by two experienced researchers who identified key themes whilst undertaking an inductive thematic analysis with a focus on how PCCs experienced providing care coordination for CMC and their families.
Results: PCCs felt very supported by their local line managers, however, not having direct access to other PCC colleagues was described as “isolating” and “lonely”. It is not unusual for two PCCs working in the same LHD to be located >200 kilometres apart with limited face to face contact. PCCs talked about having less contact with families than they expected with the role centring on organising, seeking, and connecting needed services. The roles also varied across regions and some PCCs also provided clinical care as part of their role. Capacity was discussed by all PCCs most of whom held part-time roles (one was full-time) and worried about supporting families on non-work days. In five out of six interviews, PCCs talked about being available on days off as “there is no one else to help these families”.
Significant emotional and cognitive toll was described by PCCs during care provision for highly complex medical needs, in the context of challenging psych-socio-economic family challenges. PCCs displayed resilience and felt that they were making a real difference in the care of CMCs and their families: “The role is very heavy at times, heavy on your heart and heavy in the workload, but it is also very rewarding….”
The importance of professional networks or a “buddy-system” was a theme underlined by all PCCs. They felt that resources were needed to support networks and PCC communities of practice to ensure these new roles are supported and sustained.
Conclusion: The PCC role is complex, varied and nuanced to the local context and CMC needs. The role is valued by PCCs and they feel they make a real difference to the lives of families with CMC living in rural Australia. A community of practice involving all PCCs in NSW has been established and is needed to support PCCs in their role to provide integrated care.