First-time stroke survivors and caregivers' perceptions of being engaged in rehabilitation

Aim. To explore community-dwelling first-time stroke survivors and family caregivers' perceptions of being engaged in stroke rehabilitation. Background. Stroke is recognized as a worldwide common healthcare problem and the leading cause of adult disability. An holistic approach to rehabilitation can only be achieved by engaging stroke survivors and caregivers in all stages of recovery and by providing ongoing coordinated rehabilitation programmes. Design. An interpretive study design was applied to the study. Method. In-depth semi-structured interviews with 22 community-dwelling first-time stroke survivors and caregivers were conducted in 2013. The interviews were audiotaped, transcribed and analysed using a thematic analysis. Findings. Four major themes were identified. First, participants demonstrated low health literacy in stroke and their needs to learn about the disease and rehabilitation were usually ignored in busy clinical settings prior to discharge from hospital. Second, there was a lack of communication and continuity of treatment when the stroke survivors were transferred from one institution to another. Third, challenged with fragmented post-discharge rehabilitation services, the participants perceived that nurse-led coordination of rehabilitation was desirable. Fourth, participants perceived ongoing changing of rehabilitation goals in different stages of recovery. They expected to be engaged in ongoing rehabilitation planning and programmes. Conclusion. The findings of this study challenge service providers to realize a true partnership with stroke survivors and caregivers by working with them as one team that is led by nurses. Making the necessary changes requires mutual effort at both the systemic and individual levels with rehabilitation nurse-led coordination of rehabilitation programmes.