Implementing a pilot intervention across eleven sites: Adapting and negotiating multiple challenges

Background: Neurodegenerative movement disorders such as Parkinson’s disease (PD) result in progressive physical and cognitive deterioration severely impacting on an individual’s quality of life. For those living in rural and remote areas, limited access to specialist services markedly increases adverse events and reduces quality of life (QoL). Improved QoL for people living with PD and their carers has been demonstrated when a Movement Disorder Nurse Specialist (MDNS) provides high-level assessments and coordination of a multi-disciplinary team. Current nurse-led models are based in metropolitan or large regional areas. In 2020, Western NSW Primary Health Network (WNSW PHN) and Charles Sturt University (CSU) commenced a 3-year MDNS pilot recruiting a nurse from each of eleven regional, rural, and remote sites in Western NSW. The pilot provides capacity building activities, industry memberships, mentoring and support to develop a community of practice and enable extensive networking increasing both access to and quality of specialized nurse-led care in primary care settings. These strategies may also increase retention of nurses committed to their communities by increasing access to a career working at an advanced practice level.
Aims: To develop and implement a movement disorder nurse-led model of care to provide quality safe and effective care in rural and remote settings. To evaluate the project capturing data to enable comparison between sites, measure service delivery, impact on hospital admissions and effectiveness to support sustainability and replication in other settings.
Methods: Development and implementation of the pilot is informed by the principles of implementation science, the Consolidated Framework for Implementation Research and international and Australian research focused on nurse-led models of care for people with PD. An advisory committee of stakeholders from health services, the peak body, a person with PD and a carer and specialist movement disorders nurses support the design and implementation. A realist evaluation comprising a co-authored case-study for each site (nurse and researcher) combined with collection of qualitative and quantitative data is underway.
Challenges: Multiple challenges have confronted project leaders, researchers, and nurse participants to date, including limited internet access for on-line activities, identifying existing assessment tools and aligning data collection across different services, staffing shortages with participants shifted at short notice to fill service gaps and COVID-19.
Implications: Allocate time to active and ongoing problem-solving. Flexibility, adaptability, and rapid pivoting to alternative options for capacity building is essential when undertaking a multi-site project in rural and remote settings.