Improving care
About this theme:
The care that people with long term neurological conditions require can vary over the course of the condition. Our research into improving care for people with long term neurological conditions sits within two broad areas:
Quality of life
Long term neurological conditions can impact the quality of life of patients and their carers. Our research focuses on factors that influence quality of life. Key areas include:
- Promoting patient self-management and support for caregivers.
- Developing measures and metrics of patient and carer quality of life and related outcomes.
- Understanding individual care requirements and the factors that affect these.
- Evaluating how the delivery of care affects patients and their carers.
Digital care
Advances in technology and digital care offer new opportunities to deliver care differently. Our research aims to investigate how to maximise this opportunity. Key areas include:
- Enabling people to access and use digital health technology, including online care platforms to support self-management and care delivery.
- Developing strategies to support patients and carers to better manage their care using online resources.
- Empowering healthcare professional use of digital health technology, including optimising use, increasing confidence, and sharing skills and expertise.
Researchers working under this theme:
Dr Patricia Fuller
Research Fellow
Patricia is a Research Fellow within the Faculty of Medicine at the University of Southampton.
She is currently working on the Optimising Outpatients project.
Dr Rachel Chappell
Southampton Emerging Therapies and Technology (SETT) Center Manager
Following a PhD in chemistry Rachel worked in the IT industry for 10 years before joining the NHS where she has now spent 20 years working across many areas. From […]
Dr Sarah Fearn
Senior Research Fellow
Sarah joined the Faculty of Medicine at the University of Southampton as a Senior Research Fellow in 2016 and has extensive experience carrying out research into care for people with […]
Dr John Spreadbury
Senior Research Fellow
John is a senior research fellow within the NIHR ARC Wessex, Ageing and Dementia Theme, based in the Faculty of Medicine at University Hospital Southampton. John’s research interests include digital health […]
Professor Chris Kipps
Consultant Neurologist
Chris is a Consultant Neurologist with subspecialty interest in behavioural neurology and cognitive disorders, and Professor of Clinical Neurology and Dementia at University Hospital Southampton and the University of Southampton. […]
Theme projects:
EnTech (Enabling Technology): Investigating the enabling and inhibiting factors to the use of internet-based support tools for caregivers of people with dementia, and how to promote engagement
Neurological LTC: Online Integrated care platform study
Optimising Outpatients: Effective service transformation through face-to-face, remote and digital care delivery.
YODA
Neuro Digital: From Attitudes to Strategies
Featured theme publications:
A Comprehensive Literature Search of Digital Health Technology Use in Neurological Conditions: Review of Digital Tools to Promote Self-management and Support – Journal of Medical Internet Research
John Spreadbury, Alex Young, Christopher Kipps
The use of digital health technology to promote and deliver post diagnostic care in neurological conditions is becoming increasingly common. However, the range of digital tools available across different neurological conditions and how they facilitate self-management are unclear. This review aims to identify digital tools that promote self-management in neurological conditions and to investigate their underlying functionality and salient clinical outcomes.
Neuro LTC: Online integrated care plan
Chappell R & Kipps C
Complex long-term neurological conditions often require the input of several health care teams across primary and secondary care settings. Personalised care plans allow for integrated care planning and improved communication between the different health care professional teams.
The Causes and Impact of Crisis for People with Parkinson's Disease: A Patient and Carer Perspective
Fearn S, Bartolomeu Pires S, Agarwal V, Roberts HC, Spreadbury J and Kipps C
The reasons for acute hospital admissions among people with Parkinson’s disease are well documented. However, understanding of crises that are managed in the community is comparatively lacking. Most existing literature on the causes of crisis for people with Parkinson’s disease (PwP) uses hospital data and excludes the individual’s own perspective on the crisis trigger and the impact of the crisis on their care needs.
Clinical nurse specialist's role in young-onset dementia care
Spreadbury JH and Kipps CM
Post-diagnostic care in young-onset dementia (YoD) varies, from something that is occasionally structured, to improvised, to frequently non-existent depending on geographic region. In a few regions in England, a nurse designated to helping families may exist. This study aimed to describe this seldom-observed nursing role and its content.
Quality of Life Assessments in Individuals With Young-Onset Dementia and Their Caregivers
Dixit D, Spreadbury J, Orlando R, Hayward E and Kipps C
Quality of life (QoL) has seldom been investigated or explicitly measured in young-onset dementia (YoD). The aims of this study were (1) to investigate and compare QoL self- and proxy reports in a sample of YoD patients and caregivers using different conceptual assessments of QoL and (2) to examine the relationship between caregiver QoL and both burden and mental health.