OSCARSS Progress – Teamwork in Action
The Stroke Association has been urging people to “Take action on Stroke” as part of their #MakeMayPurple month. This blog, from CLAHRC GM Facilitator, Zoe Ashton, is about the OSCARSS study – Organising Support for CARers of Stroke Survivors – and the teamwork needed to make it happen.
During May, the UK’s leading Stroke charity, the Stroke Association, has been urging people to “Take action on Stroke”; here, at NIHR CLAHRC Greater Manchester, we know that it takes many people to make research happen. The Organising Support for CARers of Stroke Survivors (OSCARSS) study has reached an exciting phase with the first outcome data starting to come in as carers have been filling in and returning questionnaires.
The study is evaluating different approaches to supporting carers provided by the Stroke Association, and carers are being asked to complete questionnaires at study entry – shortly after they have first met with a Stroke Association Coordinator – and three months later. Interviews with carers and Stroke Association staff are also being carried out to help us to understand how the support was delivered in practice.
The questionnaire three months after the initial visit from the Stroke Association looks at the perceived burden of caring, its effect on health and well-being; satisfaction with services, and economic burden for carers and society (the study outcome data). We know that things can be busy for those who care for someone who has had a stroke. So during the planning of the study, the dedicated research user group -made up of people with experience of caring for Stroke survivors – suggested that a call to the carers would be good, to let them know that a questionnaire is about to be posted to them, and to offer support to complete both the initial and three-month stage questionnaire.
I am one of the research team members who have been contacting carers and supporting the process of recruitment, and, having spoken to quite few carers now, I am impressed with their commitment to supporting this research despite their challenging situations. The majority of carers I have spoken to are very happy for us to call them and send them the questionnaires, and the number of questionnaires being returned is very encouraging.
The Stroke Association coordinators who explain the study to carers and ask permission for the research team to contact them, are a big part of this success. They are the people who introduce the study, which means that carers already have an idea of what may be involved. For many carers this will be a difficult time emotionally and practically, and it has been shown that carers often have little time for themselves, so for them to spend time taking part in research is even more impressive.
This study will shed light on the problems that carers face and will provide evidence to help ensure carers are being supported effectively going forward.