Abstract
Introduction: Implementation of integrated care for children living with medical complexity (CMC) and their families requires the establishment and support of key innovative workforce roles that span health, disability, community and social care systems. RuralKidsGPS is a paediatric care coordination service implemented in four Local Health Districts (LHDs) in New South Wales, Australia since 2022. Paediatric Care Coordinators (PCCs) provide family-centred care, shared care plans, and link multiple clinical teams looking after the CMC. Understanding PCC experiences, training and support needs is crucial for effective integrated care delivery and model sustainability.
Methods: Ten PCCs participated in one-on-one semi-structured interviews at 6 and 12 months after commencing their roles. The interview schedule covered role scope, training and support, and mechanisms for maintaining PCC wellbeing. Transcripts were analysed by two experienced researchers who inductively identified key themes.
Approach: PCCs felt very supported by their local line managers, however, not having direct access to other PCC colleagues was described as “isolating” and “lonely”. Most PCCs worked part-time (0.5- 0.8 full-time-equivalent) and often they were the only person in the LHD in the role. Even if there were two PCCs in the same LHD, in the rural context their closest colleague could be located >200 kilometres away. PCCs talked about significant role complexity in terms of CMC medical and support needs, highly complex psycho-socio-economic circumstances of families and complex fragmented health, disability and social care systems. Capacity was discussed by all PCCs most of whom held part-time roles and worried about supporting families on non-working days and all PCCs talked about working on days off as “there is no one else to help these families”.
PCCs experienced an emotional toll and vicarious trauma whilst supporting the CMC to access services for their highly complex medical needs, within the context of significant challenging psycho-socio-economic family challenges, including parental mental health, unstable income, housing, and access transport. When asked about how they looked after their own wellbeing, most PCCs avoided the question, some became upset and most talked about de-briefing with their direct line-manager. PCCs displayed resilience, felt their role was important and they were making a real difference in the care of CMCs and their families.
The role of a PCC was highly dynamic and unpredictable: “I think I think it's a dynamic role in terms of…I think sometimes you just do what you have to do and I don't think there is necessarily a really clearly defined”. The importance of professional networks or a “buddy-system” was a theme underlined by all PCCs and the establishment of a virtual community of practice was highly valued by PCCs. They also felt that PCC roles needed greater recognition in the health system and that stock-standard nurse role descriptions were not adequate to cover the skills and role scope as experienced on the front lines.
Conclusion: Organisations implementing innovative models of integrated care must also consider implementing support structures and processes to support key workers without whom model sustainability is threatened.