The psychosocial impact of exercising with epilepsy: A narrative analysis

Abstract

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

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

“…Troster (1997) presented comparable findings in the desire for people with epilepsy not to disclose, therefore limiting potential negative social consequences. Similar statements were expressed by other people with epilepsy within a sports and/or exercise setting (Scarfe and Marlow, 2015;Collard and Marlow, 2016a). In our findings, for those who did disclose, the feelings of 'being different' were less important than their safety, as they felt safer if they disclosed their epilepsy.…”

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

“…To limit researcher bias, reflection techniques were followed throughout the research process. Such techniques included discussions with the co-author, self-reflection, and memo writing [4,5].…”

“…Furthermore, research investigating quality of life (QoL) shows the improvement in mood and QoL for PWE after a 12 week exercise program [3]. Recent qualitative research has confirmed these benefits of exercise, with participants voicing that exercise increases their physical health, decreases stress levels, increases self-esteem, positively impacts mood, and improves QoL overall [4,5]. Although both qualitative and quantitative research have presented the positive impact of sports and exercise for a person with epilepsy [1-3, 5, 6], the prevalence of regular exercise for a person with epilepsy is lower compared to the general public [7], as there are still common barriers (both physical and psychosocial) that prevent many PWE from feeling the benefits of exercise [4,5,8].…”

“…Although both qualitative and quantitative research have presented the positive impact of sports and exercise for a person with epilepsy [1-3, 5, 6], the prevalence of regular exercise for a person with epilepsy is lower compared to the general public [7], as there are still common barriers (both physical and psychosocial) that prevent many PWE from feeling the benefits of exercise [4,5,8]. The main barriers to sports and exercise reported are fear of the seizure occurring [4,8], fear of seizure-related injuries [9], stigma [5,10] and incorrect advice from medical professionals [4,5,11,12,13]. As a result, this inactivity has shown to cause social isolation, low self-esteem, weight gain, and depression [5,9,11].…”

“…The main barriers to sports and exercise reported are fear of the seizure occurring [4,8], fear of seizure-related injuries [9], stigma [5,10] and incorrect advice from medical professionals [4,5,11,12,13]. As a result, this inactivity has shown to cause social isolation, low self-esteem, weight gain, and depression [5,9,11].…”