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 in 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.
BarrettRPSachsHTI (2006) Epilepsy and seizures. In: PhelpsL (ed) Chronic Health-Related Disorders in Children: Collaborative Medical and Psychoeducational Interventions. Washington, DC: American Psychological Association, pp. 91–110.
2.
BakerGABrooksJBuckD, et al. (1999) The stigma of epilepsy: A European perspective. Epilepsia41(1): 98–104.
3.
CharmazK (1990) ‘Discovering’ chronic illness: Using grounded theory. Social Science & Medicine30(11): 1161–1172.
CollardSSEllis-HillC (2017) How do you exercise with epilepsy? Insights into the barriers and adaptations to successfully exercise with epilepsy. Epilepsy & Behavior70: 66–71.
6.
CollardSSMarlowC (2016a) The psychosocial impact of exercising with epilepsy: A narrative analysis. Epilepsy & Behavior61: 199–205.
7.
CollardSSMarlowC (2016b) ‘It’s such a vicious cycle’: Narrative accounts of the sportsperson with epilepsy. Psychology of Sport and Exercise24: 56–64.
8.
EnglandMAustinJKBeckV, et al. (2014) Erasing epilepsy stigma: Eight key messages. Health Promotion Practice15(3): 313–318.
Folch-LyonETrostJF (1981) Conducting focus group sessions. Studies in Family Planning12(12): 443–449.
15.
GardnerAMcCutcheonHFedorukM (2012) Discovering constructivist grounded theory’s fit and relevance to researching contemporary mental health nursing practice. Australian Journal of Advanced Nursing30(2): 66–74.
16.
GoffmanE (1963) Stigma: Notes on the Management of Spoiled Identity. Hoboken, NJ: Prentice-Hall Inc.
17.
JacobyAGorryJGambleC, et al. (2004) Public knowledge, private grief: A study of public attitudes to epilepsy in the United Kingdom and implications for stigma. Epilepsia45(11): 1405–1415.
18.
JacobyASnapeDBakerGA (2005) Epilepsy and social identity: The stigma of a chronic neurological disorder. The Lancet Neurology4(3): 171–178.
19.
JodeletD (1991) Madness and Social Representations. Hemel Hempstead: Harvester Wheatsheaf.
20.
KaufmanKRKaufmanND (2013) Stand up for epilepsy San Diego photo shoot: A personal odyssey. Epileptic Disorder15(2): 211–215.
21.
KilincSCampbellC (2009) ‘It shouldn’t be something that’s evil, it should be talked about’: A phenomenological approach to epilepsy and stigma. Seizure18(10): 665–671.
22.
LinkBGPhelanJC (2001) Conceptualizing stigma. Annual Review of Sociology27: 363–385.
23.
MatthewsAJonesNThomasA, et al. (2017) An education programme influencing health professionals to recommend exercise to their type 2 diabetes – Understanding the processes: A case study from Oxfordshire, UK. BMC Health Services Research17: 130–145.
24.
RatyLKAWilde-LarssonBM (2011) Patients’ perspectives of living with epilepsy: A phenomenological study. Journal of Clinical Nursing20: 1993–2002.
25.
ScamblerGHopkinsA (1986) Being epileptic: Coming to terms with stigma. Sociology of Health & Illness8(1): 26–43.
26.
ScarfeSVMarlowC (2015) Overcoming the fear: An autoethnographic narrative of running with epilepsy. Qualitative Research in Sport, Exercise and Health7(5): 688–697.
27.
SchneiderJWConradP (1980) In the closet with illness: Epilepsy, stigma potential and information control. Social Problems28(1): 32–44.
28.
TrosterH (1997) Disclose or conceal? Strategies of information management in persons with epilepsy. Epilepsia38(11): 1227–1237.
29.
TrosterH (1998) Coping with the stigma of epilepsy. Psychology, Health, & Medicine3(2): 149–161.
30.
TuttasC (2015) Lessons learned using web conference technology for online focus group interviews. Qualitative Health Research25(1): 122–133.
31.
Van TeijlingenEPitchforthE (2006) Focus group research in family planning and reproductive health care. The Journal of Family Planning and Reproductive Health Care32(1): 30–32.
32.
VickersMH (2000) Stigma, work, and ‘unseen’ illness: A case and notes to enhance understanding. Illness, Crisis & Loss8(2): 131–151.
33.
WoodyattCRFinneranCAStephensonR (2016) In-person versus online focus group discussions: A comparative analysis of data quality. Qualitative Health Research26(6): 741–749.
