How does the review process support adults in the first year post-stroke? The patient experience

Background: Reducing stroke related mortality and morbidity is a Government priority. In 2007, the National Stroke Strategy recommended reviewing stroke survivors at six weeks, six months and annually thereafter but there is much variation in implementation and limited evaluation. While there is evidence of unmet need post-stroke there is little evidence to suggest that the review process ameliorates it. This study aimed to identify the purpose and outcomes of the review process from the perspective of patient, carer, provider and commissioner and to identify the mechanisms by which these were achieved. As many patients are still engaged in rehabilitation at six weeks post-stroke, a six-week review is of less significance than a six-month one by when services have usually withdrawn and patients report feeling abandoned. The annual review is not widely available and therefore this study concentrates on the six-month review. Method: A multiple case study approach underpinned by critical realism informed the research design and allowed in-depth exploration of the six-month review. Case studies draw on multiple sources of evidence to allow triangulation, develop convergent evidence and thus strengthen construct validity. Three sites in the South East Coast region were chosen for their different approaches set within the context of local policies and demographics. Data sources included interviews with patients, carers, providers who carried out reviews, service managers and commissioners; observations in clinical settings; and local policy and service documentation. This allowed multiple perspectives in order to explore the underlying mechanisms of the review. Patients were interviewed approximately six weeks post-discharge and again after their six-month review. Overall, 46 patients, 30 carers and 28 professionals were interviewed between December 2015 and October 2016. Twenty-nine reviews were observed. The age range of patients was 28-91 years and slightly more than half were male. Data analysis drew on three approaches selected for a particular strength: thematic analysis was chosen for its clear and succinct account of coding and epistemologically neutral stance (Braun and Clarke 2006); Yin's (2014) case study analysis provided helpful suggestions for theory development; and Bazeley's (2013) comprehensive text provided a model for analysis and theory development compatible with critical realism. Data was managed using Nvivo 11. Within each site, all data sources were coded in an iterative process to develop the coding framework and an understanding of site specific issues. Data was then explored across sites before building a typology of patients in order to develop a theoretical understanding of the review process that could be extended to a broader context. Findings: Six-month reviews carried out by stroke nurse specialists were found to be more medically orientated than those completed by a Stroke Association co-ordinator who focused on social issues. Reviewers regarded them as an opportunity to address unmet need but expressed different opinions as to what this encompassed. Managers and commissioners were mainly concerned with outcomes focused on (cost-) effectiveness. Patients' views were influenced by their experiences of the care pathway, orientation to rehabilitation and the nature of their relationships with clinicians during their rehabilitation. Those who reported a positive experience of care and took a proactive approach to rehabilitation were likely to self-manage their condition and find the review helpful. Their comments emphasised that they valued reassurance, information and advice. A second group was positive about rehabilitation but largely on their own terms and rejected advice from reviewers. Finally, a small number who did not find the review helpful had pre-existing long-term conditions and/or complex social circumstances. They were critical of services, did not trust reviewers or clinicians in general, and were focused on issues outside the remit of the review. Discussion: The medical and social paradigms which framed the review process each had their own strengths but some patients, particularly those with complex social circumstances and co-morbidities, needed elements of both within an individually tailored approach. There was a tension between the structure imposed by policy and the agency and wish of reviewers and patients to individualise the process. Encouraging self-management was a key aspect of the review but was limited by the nature of the intervention and gaps in community services. The review acted as a gateway to further services, for example clinical psychology, although such services were not always available. Recommendations: The six-month review needs to be embedded into the care pathway and strategies for secondary prevention reviewed and consolidated at each stage. Reviewers should be allowed the freedom to individualise the process on a needs-led basis rather than adhering to a rigid framework dictated by policy. The six-month review ought to relate back to therapy goals and forward to community services to encourage participation in valued activities, and community integration, which are the key goals of rehabilitation.