A neurological problem can occur to any person, at any time, and the impact can be life-changing. Some neurological conditions result in long-term disabilities and impede participation in certain activities. These forced changes can impact the quality of life and personal relationships of the people who are affected.
In January 2016, the Neurological Council of Western Australia commenced a service called Neurocare in Perth, Western Australia. Neurocare is a community-based, generic neurological nursing service that provides support to patients in the community with neurological disorders.
The fundamental principles of the Neurocare approach to service delivery are reflected in the Neurological Integrated Care Pathway (NICP) inward-outward model of practice, where advanced community neurological nurses are pivotal in the delivery of comprehensive neurological health care to achieve optimal patient outcomes. Community nursing services like Neurocare have been shown to improve outcomes for patients and reduce readmissions and the associated cost of inpatient care.
Neurocare as a collaborative project between Neurological Council and Murdoch University
To ensure better success of the programme, a collaborative project between the Neurological Council of Western Australia and Murdoch University was instituted. This two-year collaboration was initiated by Adjunct Associate Professor Kathleen (Kathy) McCoy, who was the Council’s Executive Director at the time.
The project’s aim was to develop a best practice community nursing model of care for people suffering from neurological conditions after being discharged from acute-care hospitals.
Drawing on her extensive experience as a neurological nurse, McCoy was very aware of the difficulties experienced by people with neurological conditions living in the community, especially those with neurological symptoms yet to be diagnosed or with a rare neurological disorder.
It was McCoy’s vision to establish a generic community nursing service to provide support to all persons with neurological conditions. This vision extended to using research to explore and contribute to the future development of the service. Sadly, she passed away in 2021, and this work was dedicated to her memory.
What is this project about?
The project, collaboratively conducted by academic researchers and clinicians, used an exploratory, descriptive, mixed-method design. It commenced with a rapid review of the literature about approaches to community neurological nursing care following discharge from acute care hospitals. A World Café was then conducted to explore the needs of people with neurological conditions after they are discharged from hospital.
Our study, which was part of the project, investigated the standard of living of 47 patients who had neurological conditions and 27 informal caregivers who received Neurocare services after hospital discharge. It also surveyed the burden on informal caregivers, as this type of care is known to affect caregivers emotionally, physically, socially, and financially.
The step-by-step approach
Following ethical procedures, registered nurses working for the Neurocare service recruited participants recently discharged from hospital. More than half of the patients in this study had been admitted to hospital for a stroke.
Although the remaining patients had long-term neurological conditions, many were admitted for non-neurological reasons such as falls, fractures, and chronic pain. The average age of the participants was 74 years for patients and 66.5 years for their caregivers.
Quality of life and post-discharge support needs
Although the quality of life for patients and caregivers was found to be satisfactory, the patients’ scores for physical and psychological health, as well as their environment (including home environment, financial status, transportation, and access to health and social care), were less than scores previously recorded for other Australian populations. The physical health of caregivers was lower than would be expected in an Australian population, with 50% of the caregivers experiencing carer burden and 42% reporting a risk for developing depression.
Patients in the study had substantial care and support needs following hospital discharge. They needed help to continue living independently at home (e.g. dressing, bathing, household chores, meal preparation, transport, shopping and home maintenance). The patients’ and their caregivers’ age and socioeconomic circumstances (e.g. low household incomes) also impacted their health, well-being and living standards. Furthermore, the older age of most patients and caregivers in this study further contributed to this result.
Insights and directions
It is essential that patients in the community with neurological disorders are able to access health care and be self-caring to improve their health outcomes and reduce costly unplanned readmissions to hospitals.
Nursing services such as Neurocare provide patients and caregivers support after discharge to perform their respective roles and to provide solutions to problems as well as setting and achieving their objectives, while also adapting to their long-term neurological conditions.
Bridging the gap
Routinely capturing the perspective of informal caregivers and patients regarding their quality of life as well as the caregiver burden would be a beneficial initiative. These perspectives may give service providers some insight into the needs of the patients and caregivers. It may also facilitate the planning of community-based services aimed at enhancing their self-management capacity and well-being.
Neurology-generalist nurses based in the community can help to reduce the gap between the hospital and home to ensure continuity of care and enhance their patients’ self-management. Helping patients and their caregivers navigate health and social care services, including financial resources, should be part of the community’s neurological nurses’ work to ensure a more holistic and well-rounded recovery for their patients.
Pugh, J. D., McCoy, K., Williams, A. M., Pienaar, C. A., Bentley, B., & Monterosso, L. (2022). Neurological patient and informal caregiver quality of life, and caregiver burden: A cross-sectional study of postdischarge community neurological nursing recipients. Contemporary Nurse, 58(2-3), 138–152. https://doi.org/10.1080/10376178.2022.2086892