Kulnik, Stefan Tino (2019) Sense of self in self-management in neurological conditions. In: Performing and Picturing Patienthood : Exploring Graphic Illness Narratives; 04-05 Apr 2019, London, U.K.. (Unpublished)

Abstract

There is increasing interest in self-management support, but little detail is available on the relevance and impact of such approaches for people with progressive neurological conditions. Our study aimed to draw on individuals’ experiences, to inform the practice of self-management support for these groups. We purposively recruited community rehabilitation service users and conducted in-depth qualitative interviews. Interviews were audio-recorded and transcribed. Data analysis was iterative and interpretative, taking a phenomenological approach. Strategies to enhance rigor were auditability, peer review, and researcher reflexivity. Ten adults (age 20–79 years) took part. They were living with a range of progressive neurological conditions, including multiple sclerosis and Parkinson’s disease. Individuals demonstrated resourcefulness in developing practice-based self-management strategies. Beyond practical strategies, interviewees’ experiences were signified by reflecting on and upholding a sense of identity and a desire for purpose against the background of losses and gains over time. Linking with this overarching theme of “Sense of self” were aspects of “My body and mind”, “Time”, “Space”, “Relationships”, and “What I do”. Our interpretation of these findings is that self-management approaches for individuals with progressive neurological conditions will benefit from incorporating ways of recognizing, articulating, and supporting the person’s sense of identity and purpose.

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