Engaging service users in the development of stroke services: an action research study

Abstract

To develop local stroke services by involving, in a meaningful way, those affected by stroke in identifying and prioritising service development issues. Consideration should be given to including the views of service users in the evaluation and re-design of services. In stroke, the involvement of patients and carers in the development of services has generally been at a consultative level. There is a need to explore strategies to engage patients and carers more fully with the service development agenda. Action research. Within the Reflection Phase of this action research study patients' and carers' experiences of stroke services were explored by semi-structured interviews and focus groups. In the Planning and Action Phases, externally facilitated workgroups comprising patients, carers and professionals used a synthesis of the data to identify a range of service development priorities, which informed the development of action plans. Information provision, preparation for transfer of care and the integration of social and leisure activities appear to be priorities for the development of stroke services from the perspective of patients and carers. These findings informed the work of four collaborative workgroups to lead developments in the stroke pathway as follows: stroke prevention and immediate care, early and continuing rehabilitation, transfer of care and long-term support and information provision. Stroke patients and carers played a key and meaningful part in the identification and prioritisation of service development issues. External facilitation ensured progress with service development and maintaining patient and carer participation. Several pragmatic recommendations for enhancing the local delivery of stroke services were made. With external facilitation it is possible for stroke service users to take a meaningful role in service developments that moves beyond consultation.