How to develop a patient and carer advisory group in stroke care research

Aim: The aim of this paper is to inform and advise researchers on the practical issues associated with involving stroke patients and their carers in research. Background: The involvement of patients and carers in research is increasingly recognised as important, yet researchers are often unclear on how to do this in practice. This is particularly evident in the field of stroke care, where there is limited information available about how to involve stroke patients and their carers in research effectively, or about the difficulties associated with this. Data source: Experience of developing a patient and carer advisory group. Review methods: This paper reflects on the process the authors undertook when developing a stroke patient and carer advisory group as part of a research study exploring the effect of interprofessional team working on the experiences and outcomes after stroke of patients and carers. Discussion: This paper discusses the challenges and the benefits of developing a stroke patient and carer and advisory group, and offers advice to other researchers undertaking a similar process. It aims to provide some practical suggestions that may aid researchers wishing to involve stroke patients and carers in their research. Conclusion: Stroke patients are likely to be older and have long-term physical disabilities or communication problems that may make their involvement in research more challenging to implement. However, with planning and consideration and the allocation of sufficient time and resources, stroke patients and their carers can be effectively involved, resulting in benefits to the research process and output, and to researchers, patients and carers. Implications for practice/research: Pay attention to planning and the practical details of involving stroke patients and their carers in research, ensuring that meetings are arranged in an accessible venue. Use straightforward language in all forms of communication. Listen carefully to their views and perspectives and be prepared to make changes to the study and revise methods if appropriate.