The meaning and experience of being a stroke survivor: an interpretative phenomenological analysis

PURPOSE: To investigate the meaning and experience of being a stroke survivor. METHOD: Qualitative in-depth semi-structured interviews were conducted with 10 stroke survivors (five face-to-face and five e-mail interviews). The interview data were transcribed verbatim (these were pre-transcribed in e-mail exchange) and analysed using Interpretative Phenomenological Analysis. RESULTS: Four themes emerged from the analysis: Disrupted embodiment and the loss of self; Invisibility of emotional difficulties; Gender, romance and sexuality; and Social interaction. These themes, respectively, revealed that participants often had difficulties with psychological adaptation to the physically disabling aspects of their stroke; they experienced enduring and disabling emotional difficulties; they had a particular concern for the viability and maintenance of romantic and sexual relationships; and they often became socially withdrawn, resulting in an increased pressure on familial caregivers. CONCLUSION: The findings of the present work suggest the need for post-stroke counselling regarding romantic and sexual relationships, as well as promoting acceptance of some of the physical disabilities that come with having a stroke and encouraging positive self-regard. There would also appear to be a need to address the issue of social withdrawal and familial relationships, perhaps when health professionals convey information regarding the person's stroke, and in counselling targeted specifically at family caregivers.