'After the stroke': patients' and carers' experiences of healthcare after stroke in Scotland

We report findings on patients with stroke and carers experiences of the healthcare system in Scotland after stroke. These findings emerged from data collected in a primary qualitative study exploring patients with stroke and carers perception of a Functional Electrical Stimulation (FES) Clinic. Rich data emerged in relation to healthcare after stroke as experienced by both patients and carers, highlighting important clinically relevant messages and constituting an important area for dissemination. Thirteen patients with stroke and nine carers consented to participate. Data were collected using face-to-face semi-structured interviews, undertaken in April and May 2007, and analysed using the framework of Interpretative Phenomenological Analysis (IPA). IPA aims to explore in depth the participants lived experiences of a specific phenomenon. An overarching theme of 'After the stroke' was identified. Within this, six sub-themes emerged entitled, (1) 'What is wrong?'; (2) 'Help came quickly'; (3) 'Something is still wrong'; (4) 'In the hospital'; (5) 'I'm taking them home' and (6) 'Back at home'. Interestingly, patients with stroke and carers recalled similar parts of the pathway through the healthcare system after stroke, resulting in the six chronological sub-themes. The data highlighted issues surrounding recognition of stroke symptoms by both participants and professionals; expeditious admission to hospital and stroke unit; consultation during the discharge planning process and access to support and community follow up. Despite the availability of clinical guidelines to direct the management of stroke, this study suggests that the experiences of patients with stroke and carers do not always concur with guideline recommendations. These results highlight that such recommendations do not always transfer into clinical practice. Both clinicians and service managers should consider these issues when delivering care to patients after stroke.