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Title: Understanding the psychosocial impact of exercising with epilepsy : a narrative analysis
Author: Scarfe, Sarah Victoria
ISNI:       0000 0004 6346 3942
Awarding Body: University of Roehampton
Current Institution: University of Roehampton
Date of Award: 2014
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In recent years, the experiences of sportspeople living with a chronic illness/disorder have seen an emergence within the narrative literature (Smith, 1999; Carless & Sparkes, 2008; Stone, 2009). However, epilepsy has been noticeably absent. As epilepsy and exercise research is mostly quantitative and medico-scientific in nature (Arida, Guimares de Alameida, Cavalheiro, & Scorza, 2013; Dubow & Kelly, 2003; Nakken, 1999; Wong & Wirrell, 2006), there is no qualitative research to show the experiences of sportspeople exercising with epilepsy. Although exercise has shown to be beneficial for most people with epilepsy (Arida, Scorza, & Cavalheiro, 2010; Eriksen, Ellertsen, & Hestad, 2002; Nakken, 1999), research reveals that people with epilepsy often refrain from exercise (Ablah et al., 2009; Nakken, 1999; Sirven, 2009). Furthermore, exercise-induced seizures (EIS) provide a frustration as well as an incentive to refrain from physical activity (Nakken, 1999; Sturm, Berkovic & Reutens, 2002). Therefore, the aim of this research was to provide a glimpse into the narrative experience(s) of a sportsperson/people with epilepsy (SWE) over the course of one year. Using four semi-structured interviews with four participants, differences in experience over time as well as across athletic identity, sport type, and seizure type and frequency were represented. A holistic-content approach and structural analysis were used to analyse the narratives (Carless & Sparkes, 2008; Frank, 1995; Lieblich, Tuval-Mashiach, & Zilber, 1998). Results have shown the importance of time in the narrative construction of the SWE. Presenting a new narrative type, vicious cycle, these narratives also portrayed similar findings as was shown in Lieblich et al. (1998) (e.g., the steady, progressive, and trial and error narrative). The participants expressed a sense of freedom, body control, and mental clarity linked to exercise. These positive benefits encouraged the participants to continue even if hampered by uncontrolled seizures. Furthermore, outside variables (e.g., time, seizure frequency and type, social support, stigma, and athletic identity) have shown to have an affect on the thoughts/ actions of SWE in regards to exercise. Through this research, SWE will have a voice within research. Through this research, the SWE’s story will be told. In turn, it is desired that this new insight leads practitioners to develop and implement more effective ways for SWE to cope with the transition of diagnosis.
Supervisor: Bray, Diane ; Marlow, Caroline Sponsor: Not available
Qualification Name: Thesis (Ph.D.) Qualification Level: Doctoral
EThOS ID:  DOI: Not available
Keywords: Department of Life Sciences