Project: Organising Support for Carers of Stroke Survivors (OSCARSS)
What are we trying to do?
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 below), and other experts to adapt an existing carer-led approach, making it appropriate for those who care for stroke survivors.
From January 2017 until December 2018 this adapted approach is being tried out within services provided by the Stroke Association across England and Northern Ireland (and hopefully Wales). The study will run for two years collecting questionnaire and interview data from almost a thousand carers, as well as from the Stroke Association coordinators who provide support.
Who are we?
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. The study is funded through CLAHRC GM’s partnership with the Stroke Association and is led by the chief investigators Professor Audrey Bowen and Dr Emma Patchick.
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 November 2015, supporting development of all aspects of the design and roll out of the study. The RUG will continue to meet throughout 2017 and 2018 to review progress and to contribute to the overall management and reporting of the study.