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ORIGINAL RESEARCH article

Front. Rehabil. Sci.
Sec. Disability, Rehabilitation, and Inclusion
Volume 5 - 2024 | doi: 10.3389/fresc.2024.1477414
This article is part of the Research Topic Vol II: Person-Centred Rehabilitation – Theory, Practice and Research View all 5 articles

Stroke and Liminality: narratives of reconfiguring identity after stroke and their implications for person-centred stroke care

Provisionally accepted
  • 1 Glasgow Caledonian University, Glasgow, United Kingdom
  • 2 University College Dublin, Dublin, County Dublin, Ireland

The final, formatted version of the article will be published soon.

    Background: The complex physical, cognitive, and psychological consequences of stroke can disrupt a survivor's sense of pre-stroke normality and identity. This can have a substantial impact on their individual and social lives. Individual reports about life after stroke have improved our understanding of this impact. However, stroke support systems, struggling with increased demands due to a growing stroke population and guideline requirements, require deeper insights based on synthesised narratives into what can enable stroke survivors to rebuild their lives and identities positively to provide person-centred care.Methods: A qualitative study using Charmaz's Constructivist Grounded Theory (GT) method. Semi-structured interviews lasting 60-90 minutes were conducted. These interviews were held at least 12 months post-stroke.Findings: Thirty participants were interviewed from across the UK (14 women, 16 men; aged 31-86; 1-25 years post-stroke). Participants reported the disruption stroke could cause to their sense of identity. The concept of liminality, that describes the ambiguous, transformative state between two distinct stages, where an individual or group exists "betwixt and between" stable conditions, explains the challenge to identity post-stroke. Participants reported developing an uncertain sense of identity as they struggled to structure identity in the same way they did before stroke. This is because the participants' characteristics, traits, hobbies, or future life plans, as well as social relationships and roles, were affected by stroke. Subsequently, participants began a process of reconfiguring their identity, an often-long-term process that involved coming to terms with, and integrating, the impact of stroke on their lives. As a result, participants could enter an indefinite period of sustained liminality as they contend with long-term change and continued uncertainty.The concept of liminality, which emerged from individual stroke narratives for the first time, conveyed the adaptive and enduring nature of a stroke survivor's journey. Poststroke liminality may continue indefinitely, sustained by a survivor's subjective individual and social situation. This new insight justifies the urgent call for long-term rehabilitation and support that is tailored towards the unique nature of a survivor's circumstances. Further work is required to understand how tailored, long-term and person-centred support can encourage survivors to positively reconfigure their identity.

    Keywords: Stroke, Liminality, Identity, person-centred care, healthcare professionals

    Received: 07 Aug 2024; Accepted: 08 Nov 2024.

    Copyright: © 2024 Hall, Van Wijck, Kroll and Bassil-Morozow. This is an open-access article distributed under the terms of the Creative Commons Attribution License (CC BY). The use, distribution or reproduction in other forums is permitted, provided the original author(s) or licensor are credited and that the original publication in this journal is cited, in accordance with accepted academic practice. No use, distribution or reproduction is permitted which does not comply with these terms.

    * Correspondence: Joseph Hall, Glasgow Caledonian University, Glasgow, United Kingdom

    Disclaimer: All claims expressed in this article are solely those of the authors and do not necessarily represent those of their affiliated organizations, or those of the publisher, the editors and the reviewers. Any product that may be evaluated in this article or claim that may be made by its manufacturer is not guaranteed or endorsed by the publisher.