A collaboration between the Neurological Council and Murdoch University
In January 2016, the Neurological Council of WA commenced implementing its first metropolitan Neurocare services for patients discharged from St John of God Midland Public Hospital.
It commissioned Murdoch University to conduct a two-year exploratory study of Neurocare (Midland) to inform future development of its generic community neurological nursing model of care.
As part of this study, the researchers investigated the quality of life of patients with neurological conditions and their informal caregivers receiving our postdischarge Neurocare services (using the WHOQOL-BREF Australian version questionnaire), and also caregiver burden (using the Zarit Burden Interview).
The accepted author version was recently published online in Contemporary Nurse.
Research findings and recommendations
The researchers found that most patients and their caregivers rated their quality of life as ‘Good’. However, the patients’ physical, psychological and environment domain scores, and the caregivers’ physical domain scores, were below Australian population norms. Half of the caregivers experienced burden and 42% were at risk for depression.
The researchers concluded that the diverse group of patients with neurological conditions had considerable care and support needs for fundamental functioning postdischarge. Quality of life and caregiver burden measures highlighted the impact of demographic and socioeconomic circumstances on their health and wellbeing.
Routinely capturing patient and informal caregiver perspectives of their quality of life and carer-related burden would help service providers plan postdischarge services to enhance patients’ and caregivers’ self-management capacity and improve their quality of life.
Patients must be able to access care, use care and enact self-care to improve their health outcomes and reduce costly unplanned readmissions. This requires postdischarge support to enable patients and caregivers to perform their respective roles, solve problems, and set and achieve their goals while adapting to their long-term neurological conditions.
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. Advance online publication. https://doi.org/10.1080/10376178.2022.2086892