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Behavioural Neurology
Volume 2016 (2016), Article ID 2018509, 10 pages
http://dx.doi.org/10.1155/2016/2018509
Research Article

Persons with Epilepsy: Between Social Inclusion and Marginalisation

1Faculty of Medicine, University of Ljubljana, Vrazov Trg 2, SI-1104 Ljubljana, Slovenia
2Faculty of Medicine, Department of Family Medicine, University of Ljubljana, Poljanski Nasip 58, SI-1000 Ljubljana, Slovenia
3Imperial College London, School of Public Health, Department of Primary Care and Public Health, Global eHealth Unit, Reynolds Building, St. Dunstan’s Road, London W6 8RP, UK
4Faculty of Social Sciences, Department of Sociology, University of Ljubljana, Kardeljeva Ploščad 5, SI-1000 Ljubljana, Slovenia
5Department for Vascular Neurology, University Clinical Centre of Ljubljana, Zaloška Cesta 2, SI-1000 Ljubljana, Slovenia

Received 9 December 2015; Revised 18 February 2016; Accepted 17 March 2016

Academic Editor: Enzo Emanuele

Copyright © 2016 Simona Mlinar et al. This is an open access article distributed under the Creative Commons Attribution License, which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited.

Linked References

  1. M. Bishop and C. Allen, “Coping with epilepsy: research and intervention,” in Coping with Chronic Illness and Disability: Theoretical, Empirical and Clinical Aspects, E. Martz and H. Livneh, Eds., pp. 241–266, Springer, New York, NY, USA, 2007. View at Google Scholar
  2. D. Cappo and F. Verity, “Social inclusion and integrative practices,” Social Inclusion, vol. 2, no. 1, pp. 24–33, 2014. View at Publisher · View at Google Scholar
  3. R. Merton and J. Bateman, Social Inclusion. Its importance to mental health, Mental Health Coordinating Council, 2015, http://www.mhcc.org.au/home/publications/social-inclusion.aspx.
  4. D. Allman, The Sociology of Social Inclusion, 2015, http://sgo.sagepub.com.
  5. D. Cappo, “Quoted in VicHealth Research Summary 2—social inclusion as a determinant of mental health & wellbeing,” July 2015, http://www.health.vic.gov.au/agedcare/maintaining/countusin/inclusion.htm.
  6. P. Price, R. Kobau, J. Buelow, and K. Lowenberg, “Improving understanding, promoting social inclusion and fostering empowerment related to epilepsy: epilepsy Foundation public awareness campaigns—2001 through 2013,” Epilepsy & Behavior, vol. 44, pp. 239–244, 2015. View at Publisher · View at Google Scholar
  7. L. S. Boylan, L. A. Flint, D. L. Labovitz, S. C. Jackson, K. Starner, and O. Devinsky, “Depression but not seizure frequency predicts quality of life in treatment-resistant epilepsy,” Neurology, vol. 62, no. 2, pp. 258–261, 2004. View at Publisher · View at Google Scholar · View at Scopus
  8. K. Poole, N. Moran, G. Bell et al., “Patients' perspectives on services for epilepsy: a survey of patient satisfaction, preferences and information provision in 2394 people with epilepsy,” Seizure, vol. 9, no. 8, pp. 551–558, 2000. View at Publisher · View at Google Scholar · View at Scopus
  9. G. A. Baker, J. Brooks, D. Buck, and A. Jacoby, “The stigma of epilepsy: a European perspective,” Epilepsia, vol. 41, no. 1, pp. 98–104, 2000. View at Publisher · View at Google Scholar · View at Scopus
  10. A. Jacoby, D. Snape, and G. A. Baker, “Epilepsy and social identity: the stigma of a chronic neurological disorder,” Lancet Neurology, vol. 4, no. 3, pp. 171–178, 2005. View at Publisher · View at Google Scholar · View at Scopus
  11. C. L. I. Morgan, Z. Ahmed, and M. P. Kerr, “Social deprivation and prevalence of epilepsy and associated health usage,” Journal of Neurology, Neurosurgery & Psychiatry, vol. 69, no. 1, pp. 13–17, 2000. View at Publisher · View at Google Scholar · View at Scopus
  12. H. Admi and B. Shaham, “Living with epilepsy: ordinary people coping with extraordinary situations,” Qualitative Health Research, vol. 17, no. 9, pp. 1178–1187, 2007. View at Publisher · View at Google Scholar · View at Scopus
  13. A. Jacoby, A. Ring, M. Whitehead, A. Marson, and G. A. Baker, “Exploring loss and replacement of loss for understanding the impacts of epilepsy onset: a qualitative investigation,” Epilepsy and Behavior, vol. 33, pp. 59–68, 2014. View at Publisher · View at Google Scholar · View at Scopus
  14. K. Chung, Y. Liu, S. L. Ivey et al., “Quality of life in epilepsy (QOLIE): insights about epilepsy and support groups from people with epilepsy (San Francisco Bay Area, USA),” Epilepsy and Behavior, vol. 24, no. 2, pp. 256–263, 2012. View at Publisher · View at Google Scholar · View at Scopus
  15. B. Norsa'adah, J. Zainab, and A. Knight, “The quality of life of people with epilepsy at a tertiary referral centre in Malaysia,” Health and Quality of Life Outcomes, vol. 11, article 143, 2013. View at Publisher · View at Google Scholar · View at Scopus
  16. I. A. W. Kotsopoulos, S. M. A. A. Evers, A. J. H. A. Ament et al., “The costs of epilepsy in three different populations of patients with epilepsy,” Epilepsy Research, vol. 54, no. 2-3, pp. 131–140, 2003. View at Publisher · View at Google Scholar · View at Scopus
  17. J. F. Tellez-Zenteno, M. Pondal-Sordo, S. Matijevic, and S. Wiebe, “National and regional prevalence of self-reported epilepsy in Canada,” Epilepsia, vol. 45, no. 12, pp. 1623–1629, 2004. View at Publisher · View at Google Scholar · View at Scopus
  18. M. Bishop and C. A. Allen, “The impact of epilepsy on quality of life: a qualitative analysis,” Epilepsy and Behavior, vol. 4, no. 3, pp. 226–233, 2003. View at Publisher · View at Google Scholar · View at Scopus
  19. G. Scambler and A. Hopkins, “Generating a model of epileptic stigma: the role of qualitative analysis,” Social Science and Medicine, vol. 30, no. 11, pp. 1187–1194, 1990. View at Publisher · View at Google Scholar · View at Scopus
  20. M. Espínola-Nadurille, D. Crail-Melendez, and M. A. Sánchez-Guzmán, “Stigma experience of people with epilepsy in Mexico and views of health care providers,” Epilepsy and Behavior, vol. 32, pp. 162–169, 2014. View at Publisher · View at Google Scholar · View at Scopus
  21. World Health Organization and Media Centre, “Epilepsy,” 2015, http://www.who.int/mediacentre/factsheets/fs999/en/.
  22. B. Hancock, E. Ockleford, and K. Windridge, “An introduction to qualitative research,” 2009, https://www.rds-yh.nihr.ac.uk/wp-content/uploads/2013/05/5_Introduction-to-qualitative-research-2009.pdf.
  23. E. Fossey, C. Harvey, F. McDermott, and L. Davidson, “Understanding and evaluating qualitative research,” Australian and New Zealand Journal of Psychiatry, vol. 36, no. 6, pp. 717–732, 2002. View at Publisher · View at Google Scholar · View at Scopus
  24. P. Vermersch, “Introspection as practice,” Journal of Consciousness Studies, vol. 2-3, pp. 17–42, 1999. View at Google Scholar
  25. L. Zaletel-Kragelj, Raziskovanje v Javnem Zdravju, Medicinska Fakulteta, Ljubljana, Slovenia, 2012.
  26. E. Thompson, Mind in Life. Biology, Phenomenology and the Sciences of Mind, Harvard University Press, Cambridge, UK, 2007.
  27. V. V. Vodušek, J. Parnas, M. Tomori, and B. Škodlar, “The phenomenology of emotion experience in first-episode psychosis,” Psychopathology, vol. 47, no. 4, pp. 252–260, 2014. View at Publisher · View at Google Scholar · View at Scopus
  28. M. Schreier, Qualitative Content Analysis in Practice, Sage, London, UK, 2013.
  29. S. Elo and H. Kyngäs, “The qualitative content analysis process,” Journal of Advanced Nursing, vol. 62, no. 1, pp. 107–115, 2008. View at Publisher · View at Google Scholar · View at Scopus
  30. U. Flick, An Introduction to Qualitative Research, Sage Publications, London, UK, 2009.
  31. J. E. Chaplin, R. Yepez Lasso, S. D. Shorvon, and M. Floyd, “National general practice study of epilepsy: the social and psychological effects of a recent diagnosis of epilepsy,” British Medical Journal, vol. 304, article 1416, 1992. View at Publisher · View at Google Scholar · View at Scopus
  32. G. A. Baker, “The psychosocial burden of epilepsy,” Epilepsia, vol. 43, no. 6, pp. 26–30, 2002. View at Google Scholar · View at Scopus
  33. H. Tröster, “Disclose or conceal? Strategies of information management in persons with epilepsy,” Epilepsia, vol. 38, no. 11, pp. 1227–1237, 1997. View at Publisher · View at Google Scholar · View at Scopus
  34. P. Jennum, J. Gyllenborg, and J. Kjellberg, “The social and economic consequences of epilepsy: a controlled national study,” Epilepsia, vol. 52, no. 5, pp. 949–956, 2011. View at Publisher · View at Google Scholar · View at Scopus
  35. A. Jacoby, J. Gorry, and G. A. Baker, “Employers' attitudes to employment of people with epilepsy: still the same old story?” Epilepsia, vol. 46, no. 12, pp. 1978–1987, 2005. View at Publisher · View at Google Scholar · View at Scopus
  36. M. Öhman, S. Söderberg, and B. Lundman, “Hovering between suffering and enduring: the meaning of living with serious chronic illness,” Qualitative Health Research, vol. 13, no. 4, pp. 528–542, 2003. View at Publisher · View at Google Scholar · View at Scopus
  37. H. M. De Boer, M. Mula, and J. W. Sander, “The global burden and stigma of epilepsy,” Epilepsy & Behavior, vol. 12, no. 4, pp. 540–546, 2008. View at Publisher · View at Google Scholar · View at Scopus
  38. A. Hopkins, Epilepsy, the Facts, Oxford University Press, Oxford, UK, 1984.
  39. D. Bagič, M. Mastilica, and A. Bagič, “A five-year follow-up study of the general public awareness and perception of epilepsy in Croatia,” Epilepsy & Behavior, vol. 25, no. 2, pp. 200–207, 2012. View at Publisher · View at Google Scholar · View at Scopus