A James Lind Alliance top stroke survivor priority leads to a PhD fellowship exploring the long term consequences of stroke

2014 Conference

Abstract:

Background: The shared Top 10 research priorities of stroke survivors, carers and health professionals were identified in a James Lind Alliance priority setting project in 2012. Number 2 in the Top 10 (and the top stroke survivor priority) was “How can we help people come to terms with the long term consequences of stroke?” This led to a successful PhD fellowship application intended to address this question.

What did we do? We aimed to answer this complex question, which clearly could not be answered by one stand-alone research project, through implementing a series of projects to ‘unpack’ this top stroke survivor research priority. To achieve this, stroke survivor involvement would be central to our research. Our programme of work is being informed and advised by an advisory group of five long term stroke survivors, brought together specifically for the purpose of this project.

What was the impact? We have successfully completed the planning stage of this research project including achieving ethical approval. Stroke survivor involvement has resulted in improved design and content of information sheets, piloted and refined focus groups and advice on the best ways of overcoming those potential barriers to stroke survivor participation that may exist, and how best to overcome them.

Conclusion: Involving stroke survivors in the planning of this PhD fellowship has enhanced and provided credibility to our methods. We are confident that continuing to include the stroke survivors’ perspective throughout will be of benefit, and further improve the project as it progresses.

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