What did we do?
We aimed to understand how to improve support for carers of stroke survivors.
Why was 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.
How did we do it?
We worked in partnership with stroke carers (see ‘the Carer Research User Group’ outlined 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 was trialled within services provided by the Stroke Association across England and Northern Ireland. We collected questionnaire and interview data from over 400 carers, as well as from the Stroke Association managers and coordinators who provide support.
Who did we work with?
The OSCARSS Research User Group
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. Meet the members of the group below.
The RUG met regularly over the course of the project, supporting development of the design and roll out of the study, reviewing progress and contributing to the overall management and reporting of the study. Find out more about the role of the RUG below.
What did we find?
The results of the study have been published and reported (see links below) and you can watch a short video summarising what we found 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
Darley S, Knowles S, Woodward- Nutt K, Mitchell C, Grande G, Ewing G, Rhodes SA, Bowen A, Patchwood E., 2021Challenges implementing a carer support intervention within a national stroke organisation: findings from the process evaluation of the OSCARSS trial. BMJ Open Vol.11 (1) 2021
Mitchell C, Burke K, Halford N, Rothwell K, Darley S, Woodward-Nutt K, Bowen A and Patchwood A., 2020 Value and learning from carer involvement in a cluster randomised controlled trial and process evaluation - Organising Support for Carers of Stroke Survivors (OSCARSS). Research Involvement and Innovation.
Patchwood E, Woodward-Nutt K, Rhodes SA, Batistau E, Camacho E, Knowles S, Darley S, Grande G, Ewing G, Bowen. Organising Support for Carers of Stroke Survivors (OSCARSS): a cluster randomised controlled trial with economic evaluation. BMJ Open Vol.11 (1) 2021
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