Background: Survivors of stroke and their families report dissatisfaction with the information they receive about the expected timing and extent of recovery.
Aim: To develop an in-depth understanding of current practice in providing and receiving information about recovery in stroke units and explore patients’, carers’ and professionals’ experiences and views, to inform development of a complex intervention to improve provision.
Methods: Current practice was explored using focused ethnographic case studies in two stroke units, including non-participant observations, interviews with patients, carers and professionals, and documentary analysis. Systematic literature reviews identified and synthesised existing literature relating to patients’, carers’ and professionals’ views and experiences, and the effectiveness of existing strategies to improve provision. This work informed intervention development underpinned by behaviour change theory, with mixed-methods survey employed to gather professionals’ feedback on identified strategies.
Results: A complex range of factors influenced the consistency, quality, and delivery of information about recovery, including the hospital and stroke unit environment, multidisciplinary team (MDT) working, the uncertainties of stroke recovery, and individual differences in patients’ and carers’ abilities and needs. Patients and carers reported mixed experiences of receiving information, and desired delivery to be positive, honest, proactive, and compassionate. Identified barriers to provision included professionals’ perceived lack of skills and confidence and insufficient knowledge of the benefits. No strategies to deliver recovery information that had been proven effective in improving patient and carer outcomes could be identified from existing literature. Professionals perceived practical advice and demonstrations of communication skills, MDT support, and patient and carer accounts as feasible and effective strategies to address these barriers.
Discussion: Communication of information about recovery in stroke units continues to be sub-optimal and presents significant challenges for professionals. Further research is required to continue development of an intervention to support professionals to provide information more effectively
