Neurological patient and informal caregiver quality of life, and caregiver burden: A cross-sectional study of postdischarge community neurological nursing recipients

Abstract

Background

Neurological conditions produce considerable disease burden.

Aims

To describe quality of life in patients with neurological conditions and informal caregivers receiving postdischarge generic community neurological nursing services, and caregiver burden.

Method

A descriptive cross-sectional design was used with researchers administering the WHOQOL-BREF Australian Version questionnaire and Zarit Burden Interview.

Results

Most patients and caregivers rated quality of life as ‘Good’. The patients’ physical, psychological and environment domain scores, and caregivers’ physical domain scores, were below norms. Half of the caregivers experienced burden and 42% had risk for depression.

Conclusion

A heterogeneous group of patients with neurological conditions had considerable care and support needs for fundamental functioning postdischarge. Quality of life and caregiver burden measures highlight the impact of their circumstances on their health and wellbeing. Research is warranted to determine a comprehensive set of generic needs to guide integrated community nursing services for building patient and caregiver self-management capacity.

Keywords:

• Neuroscience nursing
• cross-sectional studies
• quality of life
• caregivers
• patients

Acknowledgements

The authors would like to thank Ms Angela Jacques for statistical advice. We also thank the Community Neurological Nurses for their assistance in data collection. This paper is dedicated to the memory of Adjunct Associate Professor Kathleen (Kathy) McCoy (1965–2021).

Disclosure statement

No potential conflict of interest was reported by the author(s).

Author contributions

Table

Additional information

Funding

This project was funded by the Neurological Council of Western Australia, grant number IRMA ID 16672 and Kathleen McCoy was the Executive Director of that organisation at the time of this study. Dr Judith Pugh currently works for the Neurological Council of Western Australia, but was employed by Murdoch University during the study.