Secondary prevention of stroke: using the experiences of patients and carers to inform the development of an educational resource

Background. Patients who have had one stroke are at increased risk of another. Secondary prevention strategies that address medical risk factors and promote healthy lifestyles can reduce the risk. However, concordance with secondary prevention strategies is poor and there has been little research into patient and carer views. Objectives. To explore the experiences of patients and carers of receiving secondary prevention advice and use these to inform the development of an educational resource. Methods. A total of 38 participants (25 patients and 13 carers) took part in the study which used an action research approach. Focus groups and interviews were undertaken with patients and carers who had been discharged from hospital after stroke (between 3 and 24 months previously). Framework analysis was used to examine the data and elicit action points to develop an educational resource. Results. Participants' main concern was their desire for early access to information. They commented on their priorities for what information or support they needed, the difficulty of absorbing complex information whilst still an in-patient and how health professionals' use of language was often a barrier to understanding. They discussed the facilitators and barriers to making lifestyle changes. The educational resource was developed to include specific advice for medical and lifestyle risk factors and an individual action plan. Conclusion. An educational resource for secondary prevention of stroke was developed using a participatory methodology. Our findings suggest that this resource is best delivered in a one-to-one manner, but further work is needed to identify its potential utility.