Expectations and experiences following a first ever transient ischaemic attack or minor stroke

Abstract

ABSTRACT Objectives: to understand how individuals’ experiences and perceptions following a TIA or minor stroke change over time, and how far, if at all, they influence recovery. In addition, to investigate whether expectations for recovery of symptoms affect actual recovery. Methods: three linked methods were adopted. Firstly, a systematic review of negative expectations was undertaken to synthesise the evidence regarding the effect of expectations on negative health outcomes and to review the measures of expectations used. Secondly, quantitative interviews of an initial sample of N=153 people recruited from NHS Lothian and NHS Fife who had had a first TIA or minor stroke were undertaken. N=143 of these were re-interviewed four to six months later, and N=103 returned postal questionnaires 18 months later. Interviews included questions and questionnaires regarding expectations for recovery, fear of recurrence, illness perceptions, recovery locus of control, medication beliefs, optimism and pessimism, resilience, anxiety and quality of life. Thirdly, qualitative semi-structured interviews of N=6 participants selected from the larger sample were undertaken, and transcripts analysed using interpretative phenomenological analysis. Results: a wide range of experiences and expectations were present at baseline interview, with a majority of participants continuing to experience symptoms of their minor stroke or TIA. By the time of the follow-up interviews, quality of life and positivity of outlook had generally improved, although there was an increased belief that the condition was chronic, and a decreased sense of control of one’s own recovery. There was a marked deterioration in many aspects by the time of the third interview, especially for the significant proportion of the sample who continued to experience symptoms of their minor stroke or TIA. These findings were broadly corroborated by the qualitative interviews, which for most also revealed difficulty in coming to terms with the aftermath of a minor stroke or TIA, making appropriate lifestyle changes and a need for further intervention. Conclusions: Recovery from a minor stroke or TIA can be protracted, confusing and distressing, and can negatively affect quality of life, especially if physical symptoms of the event persist. A lack of understanding and/or of clear information on initial diagnosis can lead to unrealistic expectations for a swift and full recovery, and to other beliefs and behaviours which may compound the risk of recurrence.