Finding Meaning and Purpose: A Framework for the Self-Management of Neurological Conditions

Stephanie Kilinc, Hannah Erdem, Rebecca Healey, Joanne Cole

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Self-management has been proposed as the way forward in improving health outcomes for people with neurological conditions; yet the experience and meaning of self-management for people with neurological conditions has rarely been focused on specifically. The current study addressed the question, what is the experience of self-managing a neurological condition? A secondary aim was to examine the feasibility of exploring self-management across neurological conditions. A qualitative, phenomenological approach was adopted, which recognised service users as the experts on their conditions. Data-prompted interviews, using scrapbooks, were conducted with eight people with various neurological conditions, residing in the north-east of England. Interpretative phenomenological analysis (IPA) identified two key themes. Theme one, “meaning and purpose”, identified achieving meaning and purpose in life as central to the self-management experience. It comprised five sub-themes (what is important to me; me and my condition; embracing my body; connecting with others; taking charge) which represented areas that could influence finding meaning and purpose. Theme two, “finding the new normal”, emphasised the centrality of reflection in an ongoing self-management process. The findings form the basis of a proposed framework for the self-management of neurological conditions which could inform practice and be developed into a self-management tool.
Original languageEnglish
JournalDisability and Rehabilitation
Publication statusPublished - 14 May 2020


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