Abstract
As stroke support systems struggle to meet the long-term needs of survivors, new insights into what can enable stroke survivors to rebuild their lives and identities positively are urgently required. This thesis aimed to explore what enables stroke survivors to rebuild their identities positively following stroke. This exploration has been shaped by social constructivist thinking, placing participant voices, stories, and co-creation at the centre of this work’s aims and methods. Two qualitative studies were conducted:1) Phase One: A constructivist grounded theory study interviewing 30 stroke survivors from across the UK aimed to synthesise stroke survivors’ experiences to further understand the process of reconfiguring post-stroke identity and how individual and social factors can help, or hinder, this process.
2) Phase Two: A co-creation study with 12 consenting participants from the Phase One study aimed to develop a novel method to co-create digital stories with stroke survivors that synthesised collective lessons from individual experiences of interacting with healthcare professionals.
In Phase One, stroke survivors reported finding themselves suddenly caught between pre and the post-stroke identities. This could result in an evolving and enduring period of liminality, a state of existence defined by uncertain identity. A novel conceptual model of post-stroke liminality and identity reconfiguration was developed to detail this process and the numerous individual and social factors that influence it. In Phase Two, stroke survivors co-created key collective lessons from their original digital stories that showed the importance of integrating a truly person-centred approach within stroke care.
This work reinforces the call for psychological well-being and support to be made a priority within stroke care. The novel application of liminality to detail the challenge to rebuilding identity post-stroke has furthered understanding of how this process is evolving, long-term, and potentially indefinite. This work has shown that stroke care seemingly remains biased towards the medical model, possibly resulting in a reduction in stroke survivor agency within healthcare. When received, inclusive and collaborative care played a vital role in supporting survivors’ recoveries. The conceptual model and study website provide a platform for further impact to raise awareness and educate stroke-related partners. The novel co-creation method developed offers a framework to effectively engage stroke related partners with a targeted behaviour change orientated educational resource.
| Date of Award | 2023 |
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| Original language | English |
| Awarding Institution |
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| Supervisor | Helena Bassil-Morozow (Supervisor) & Frederike van Wijck (Supervisor) |