Organising Support for Carers of Stroke Survivors (OSCARSS)

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 Stroke Association

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.

 

 

Downloadable Resources

 

More information

For further information please contact Professor Audrey Bowen (Academic Lead), Dr Emma Patchwood (co-Chief Investigator) or Alison Littlewood (Programme Manager).



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