Overcoming the fear: an autoethnographic narrative of running with epilepsy

Scarfe, Sarah Victoria; Marlow, Caroline

doi:10.1080/2159676x.2015.1035741

Cited by 14 publications

(32 citation statements)

References 26 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%

“…Frustration caused by being prevented from exercising was a key emotional response for these participants, and had not yet been exhibited in-depth within research [5]. 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.…”

Section: Discussionmentioning

confidence: 99%

“…For Gwen, Maya, and Andrew, exercise was a key part of their identity, and as a result, was a factor in exacerbating these side effects. This link to identity has been largely absent from current literature and only recently has been shown with a link to epilepsy and exercise [5].…”

Section: Discussionmentioning

confidence: 99%

“…However, despite the physical and mental benefits of physical activity, exercise is still not a regular occurrence for people with epilepsy [3]. The main reasons reported for inactivity are the fear of the seizure occurring [4,5], fear of seizure-related injuries [6], and being inadequately informed about the possibilities of playing sports [7]. As a potential result of this inactivity, social isolation, low self-esteem, weight gain, and depression are commonly found among people with epilepsy [7,8].…”

Section: Introductionmentioning

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: Discussionmentioning

confidence: 99%

Section: Discussionmentioning

confidence: 99%

Section: Introductionmentioning

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

Collard

Marlow

2016

Psychology of Sport and Exercise

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How do you exercise with epilepsy? Insights into the barriers and adaptations to successfully exercise with epilepsy

Collard

Ellis‐Hill

2017

Epilepsy & Behavior

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Exercise has been shown to be a physiological and psychological benefit for people with epilepsy (PWE). However, barriers prevent many PWE from exercising safely and confidently. This research explored current perceived barriers to exercise and adaptation techniques used by PWE in order to maintain physical activity levels. Three focus groups (2-3 participants per group) and three semi-structured interviews were conducted (11 participants total). Constructive grounded theory was used to frame the study and analyse the findings, presenting new insight into the motivation, perceived barriers, and adaptation techniques used to exercise. The main motivator to maintain physical activity levels was the benefit of exercise on physical and mental health. This was shown in an increase in mood, higher social interaction, and perceived improvement in overall physical health as a result of exercise. Current barriers to exercise included a fear of injury, lack of social support, and exercise-induced seizures (e.g., through overheating and/or high exercise intensity level). Adaptation techniques used were self-monitoring through the use of technology, reducing exercise frequency and intensity level, and exercising at certain times of the day. The importance of social support was shown to provide increased confidence and positive encouragement to exercise, contrasting with family and friends worrying for his/her safety and medical professionals requesting termination of some physical activities. These findings provide new insight into current adaptation techniques that are used and developed by PWE to overcome common barriers to exercise. These new additions to the literature can lead to further development of such techniques as well as examine current medical professionals' knowledge of the benefits of exercise for PWE.

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Overcoming the fear: an autoethnographic narrative of running with epilepsy

Cited by 14 publications

References 26 publications

The psychosocial impact of exercising with epilepsy: A narrative analysis

The psychosocial impact of exercising with epilepsy: A narrative analysis

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

How do you exercise with epilepsy? Insights into the barriers and adaptations to successfully exercise with epilepsy

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