What are we doing?
OSCARSS is a research study evaluating the effectiveness of approaches to identify and support the needs of carers of stroke survivors. The study will provide evidence about the impact on carer outcomes and health and social care costs, together with information about how support is delivered in practice.
Why is it important?
Stroke causes a greater range of disabilities than any other chronic condition in the United Kingdom. Stroke survivors experience loss of abilities and independence and express concerns about how their condition affects their partners and family members, who often take on the role of informal caregiver to support personal care and living with stroke. Research has suggested that informal caregivers for stroke in the UK provide care worth up to £2.5 billion per year. This can come at a great personal cost to carers, threatening their physical health, family and social networks, finances and emotional wellbeing. It is vitally important that informal carers have their needs identified and supported, yet it is unclear how best this can be achieved.
How will we do it?
We have worked in partnership with stroke carers (see 'The Carer Research User Group' below), and other experts to adapt an existing carer-led approach, making it appropriate for those who care for stroke survivors. From January 2017 this adapted approach has been tried out within services provided by the Stroke Association across England and Northern Ireland. We have collected questionnaire and interview data from over 400 carers, as well as from the Stroke Association managers and coordinators who provide support.
We are currently analysing the data we have collected and will report on our findings in Spring 2019.
Who are we working with?
We are a research team based at the University of Manchester and Salford Royal NHS Foundation Trust, working as part of the NIHR CLAHRC Greater Manchester. We are working with:
- The Stroke Association
- The OSCARSS Research User Group (see below)
The Carer Research User Group (RUG)
The OSCARSS Carer RUG, whose members have experience of stroke and caring for a family member who had a stroke, was set up specifically for the OSCARSS study.
The RUG has met regularly since December 2015, supporting development of all aspects of the design and roll out of the study. The RUG will continue to meet to review progress and to contribute to the overall management and reporting of the study. Find out more about the role of the RUG below.
- News Stories
Making May Purple…. and OSCARSS! (May 2018)
The OSCARSS award for best supporting role goes to…. Carers! - Zoe Ashton (February 2018)
OSCARSS Progress – Teamwork in Action - Zoe Ashton (May 2017)
Who cares? Poems from stroke carers - Natalie Halford (May 2016)
Keeping your own identity whilst being a stroke carer - Natalie Halford (May 2016)
Support for carers of stroke survivors - Kelly Burke (May 2016)
UK Stroke Forum Conference: Day three - Delphine Corgie (December 2014)
UK Stroke Forum Conference: Day two - Hester Benson (December 2014)
UK Stroke Forum Conference: Day one - Katy Rothwell (December 2014)
Patchwood E, Rothwell K, Rhodes S, Batistatou E, Woodward-Nutt K, Lau Y, Grande G, Ewing G, Bowen A; 2019; Organising Support for Carers of Stroke Survivors (OSCARSS): study protocol for a cluster randomised controlled trial, including health economic analysis; Trials, BMC
Organising Support for Carers of Stroke Survivors (OSCARSS): A work-in-progress Process Evaluation - Darley S, Patchwood E, Woodward-Nutt K, Knowles S & Bowen A
Organising Support for Carers of Stroke Survivors (OSCARSS): a National Cluster Randomised Controlled Trial (cRCT) with embedded Process Evaluation - Patchwood E, Woodward-Nutt K, Rothwell K, Rhodes S, Batistou E, Lau Y, Knowles S, Darley S & Bowen A
Working together and caring for carers: The story of the Research User Group (RUG) in the Organising Support for Carers of Stroke Survivors (OSCARSS) study - Patchwood E, Crees R, Burke K, Woodward-Nutt K & Bowen A