“It's such a vicious cycle”: Narrative accounts of the sportsperson with epilepsy

Collard, Sarah; Marlow, Caroline

doi:10.1016/j.psychsport.2016.01.007

Cited by 8 publications

(10 citation statements)

References 24 publications

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“…Frustration was common amongst all the participants, as being 'held back' from exercise seemed to create a feeling of inability to control their exercise life, and to achieve valued exercise aims. Similar findings are seen within sport, injury, and illness literature [29,35], and have only recently been presented within epilepsy and health literature [5,14]. This frustration only seemed to be soothed by a consistent exercise regime, and would return once it was disrupted.…”

Section: Discussionsupporting

confidence: 74%

“…Time created cyclical responses of negative and positive emotions for the participants as well as the beginnings of acceptance and adaptation. This has recently been shown within research [5,14], but would benefit from further exploration over a longer course of time.…”

Section: Discussionmentioning

confidence: 84%

“…Using a social constructionist philosophy, narrative inquiry was chosen as it has been shown to promote a heightened understanding to a subject matter that is limited through the use of quantitative means [11,12,13,14]. Described as the 'linguistic form uniquely suited for displaying human existence as situated action' [13, p.5], narratives use language as the tool to make an experience meaningful [15].…”

Section: Narrative Inquirymentioning

confidence: 99%

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The psychosocial impact of exercising with epilepsy: A narrative analysis

Collard

Marlow²

2016

Epilepsy & Behavior

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Abstract:Research has presented the benefits of and barriers to exercise for people with epilepsy through quantitative means. However, individual experiences through qualitative investigations have been absent. This research will present the narratives of people with epilepsy exercising over time and as a result, develop further understanding of the psychosocial impact of exercising with epilepsy. Four interviews were conducted over the course of one year (one every three to four months) with four participants (aged 23-38 years) who varied in seizure type and control (16 interviews in total). A narrative analysis was used to analyze their exercise experiences. Results showed that exercise creates a positive effect on psychological and physical well-being. However, prevention from exercise as a result of medical advice or re-current seizures can create negative effects such as social isolation, anxiety, lack of confidence, frustration, and anger. Adaptations of decreasing exercise intensity level and partaking in different physical activities are techniques used to lessen the negative impact and maintain an exercise routine. Time was shown to be an important factor in this adaptation as well as portrayed the cyclical responses of negative and positive emotions in regards to their exercise life. These findings provide valuable insight into the psychosocial benefits of and barriers to exercising with epilepsy, and draw attention to the individual differences in how a person with epilepsy copes with uncontrolled seizures and their impact on his/her exercise routine. This knowledge can lead to future research in exploring how a person with epilepsy can overcome these barriers to exercise and encourage more people with epilepsy to enjoy the benefits of exercise. Key Words:-Epilepsy; Exercise; Adaptation; Qualitative; Quality of life; Psychological Highlights:-Qualitative insight into exercising with epilepsy -Exercise is felt to be beneficial to overall physical and psychological well-being.-Adaptation methods increase the ability to maintain an exercise routine.-Time is a factor in coping with the impact of epilepsy upon one's exercise routine.2

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Section: Discussionsupporting

confidence: 74%

Section: Discussionmentioning

confidence: 84%

Section: Narrative Inquirymentioning

confidence: 99%

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The psychosocial impact of exercising with epilepsy: A narrative analysis

Collard

Marlow²

2016

Epilepsy & Behavior

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“…This was further developed through my (Sarah) availability to discuss the topic further outside of our interviews and/or focus groups. Through my own openness of exercising with epilepsy, further trust and rapport was developed (Collard and Marlow, 2016a, 2016b).…”

Section: Methodsmentioning

confidence: 99%

‘I’d rather you didn’t come’: The impact of stigma on exercising with epilepsy

Collard

Ellis‐Hill

2017

J Health Psychol

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Epilepsy is a common but hidden disorder, leading to stigma in everyday life. Despite stigma being widely researched, little is known about the impact of stigma for people with epilepsy within a sports and exercise setting. Using constructionist grounded theory, we explored the barriers and adaptations to exercise for people with epilepsy. Three focus groups (2-3 participants per group) and three semi-structured interviews were conducted (11 participants total). Stigma negatively impacted joining team sports, running groups, and disclosure to others. The effect of stigma was reduced by educating others about epilepsy, thus creating more awareness and understanding.

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“…31,[40][41][42][43][44][45][46][47][48] Moreover, while the social milestones examined here, including divorce and fractured family dynamics, are common across any population, what we have described are changes in social trajectories that patients attribute to the process of undergoing surgery. In such research, a specific "control" group, healthy or medical, is typically not relevant.…”

Section: Strengths and Limitationsmentioning

confidence: 99%

Identifying the trajectory of social milestones 15‐20 years after epilepsy surgery: Realistic timelines for postsurgical expectations

2019

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Objective Patients often undertake epilepsy surgery with the expectation that it will lead to improvements in their social situation. Short‐ to medium‐term research consistently points toward improvements in social outcomes; however, no study has mapped out postsurgical social timelines, particularly for longer‐term (>15 years) outcomes. Methods We recruited 39 patients who had undergone anterior temporal lobectomy (ATL) for drug‐resistant temporal lobe epilepsy (TLE) between 1994 and 2002. The cohort (24 females) had a median age of 49 years (range 38‐67), age of habitual seizure onset was 9.5 years (range 0.5‐29 years), and age at surgery was 31 years (range 20‐53). Patients were followed up for a median of 18.4 years postsurgery (IQR = 4.4). Using data obtained from semistructured interviews, we conducted a comprehensive qualitative analysis of patients' self‐reported postsurgical social trajectories. Self‐report questionnaires were used to assess mood and health‐related quality of life (HRQOL) at the time of interview. Results There was a common sequence of social milestone achievement, spanning 20 years postsurgery. Typically, patients first (re)gained their license, then attempted educational and vocational gains, followed by establishing long‐term relationships and finally a family unit. Rare, intermittent seizures postsurgery did not appear to have detrimental effects on social trajectories. Those who experienced a reduction in seizures showed increased likelihood of attaining social milestones compared to those with ongoing seizures. Significance Achieving social milestones after epilepsy surgery may take considerably longer than patients are expecting prior to surgery. The pattern of social milestone outcome resembled a process of psychosocial development. These findings have important implications for presurgical counseling and postsurgical rehabilitation.

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“It's such a vicious cycle”: Narrative accounts of the sportsperson with epilepsy

Cited by 8 publications

References 24 publications

The psychosocial impact of exercising with epilepsy: A narrative analysis

The psychosocial impact of exercising with epilepsy: A narrative analysis

‘I’d rather you didn’t come’: The impact of stigma on exercising with epilepsy

Identifying the trajectory of social milestones 15‐20 years after epilepsy surgery: Realistic timelines for postsurgical expectations

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