Project: Organising Support for Carers of Stroke Survivors (OSCARSS)
What are we trying to do?
We will develop (in stage 1) and evaluate (in stage 2) a carer-led, evidence-based approach to needs assessment and prioritisation of available support for carers of stroke survivors. The OSCARSS study will provide evidence about the impact of this approach on carers and stroke survivors (including quantitative and qualitative outcomes), as well as providing information related to health resource use and cost implications of this approach.
OSCARSS has been specifically designed within the Stroke Association’s current models of support for stroke survivors and their carers, so that the approach could be seamlessly implemented into routine practice on a national level if outcomes are favourable.
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 impacts their partners and family members, who often take on the role of informal caregiver in the home to support personal care and daily living.
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, connection with family and social networks, finances and emotional wellbeing.
Identifying and supporting the needs of informal caregivers is a priority at a national level. However, several Cochrane reviews highlight considerable uncertainty regarding how best to support stroke caregivers. Research does suggest that a ‘one-size fits all’ approach to assessment and support is not considered as beneficial as support that is most closely matched to individuals’ current and specific needs, priorities and preferences.
How will we do it?
The Carer Support Needs Assessment Tool (CSNAT) has been developed in the context of palliative care. Contrary to what may be suggested by the name, it is more than an ‘assessment tool.’ Rather, it constitutes a comprehensive, carer-led approach to individualised assessment of need and influences the organisation of tailored support.
In stage one of the OSCARSS study we will work collaboratively with stroke carers, Stroke Association staff and other expert stakeholders to adapt the existing CSNAT intervention (including the assessment tool and associated staff training package) to make it comprehensive and applicable to those caring for people following a stroke. Work will also be undertaken in stage one to inform the methodology and intervention implementation for the evaluation (stage 2).
Who are we working with?
The Stroke Association.