The social representations of epilepsy: A qualitative inquiry in the contemporary Italian context

Author/s Diego Romaioli, Luca Padovani, Antonia Oliveira Silva
Publishing Year 2023 Issue 2023/3
Language Italian Pages 23 P. 41-63 File size 280 KB
DOI 10.3280/PDS2023-003003
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According to the WHO, epilepsy affects about fifty million people worldwide. Although advances in neuroscience have now allowed a better understanding of this disease, the ways in which epilepsy has been interpreted over time are multiple and harbingers of different beliefs. The present study aims to inquiry the social representations of epilepsy in contemporary Italian context, comparing viewpoints of people with epilepsy, with the ones of family mem-bers/caregivers and a general common sense. Forty-nine episodic interviews were collected, and a thematic analysis were conducted on texts with the software Nud.Ist. The main results outline different ways of narrating epilepsy, generating different positionings in our partici-pants. Specifically, while the group of people with epilepsy and family members tends to pri-marily endorse an official medical discourse, according to which the disease is defined as a neurological dysfunction, common sense constructs the phenomenon in more multifaceted ways, anchoring it in beliefs that point to it as a psychological problem. The paper concludes with reflections on how it is possible to change the social representation of epilepsy and help promote inclusive views capable of reducing phenomena of prejudice and discrimination.

Keywords: epilepsy, social representations, episodic interview, thematic analysis, prejudice.

  1. Abric J.C. (1989). L’étude expérimentale des représentations sociales. In C. Jodelet (eds.) Les représentations sociales (pp. 187-203). Paris: PUF.
  2. Braga P., Hosny H., Kakooza-Mwesige A., Rider F., Tripathi M. and Guekht A. (2020), How to understand and address the cultural aspects and consequences of diagnosis of epilepsy, including stigma. Epileptic Disorders, 22: 531-547.
  3. Braun V. e Clarke V. (2012). Thematic analysis. American Psychological Association.
  4. Caplan R. (2019). Epilepsy, language, and social skills. Brain and Language, 193: 18-30.
  5. Capone V., Petrillo G. e Romano A. (2013). La soddisfazione lavorativa e per la vita di medici e infermieri ospedalieri: relazioni con il senso di appartenenza all’azienda ospedaliera, le percezioni di efficacia collettiva e il sostegno sociale percepito. Psicologia della Salute, 3: 115-130. DOI: 10.3280/PDS2013-00300
  6. Caputo A. (2014). The social construction of envy in scientific community: An analysis of scholarly psychological publications. Studia Psychologica, 56(2): 109-125.
  7. Charmaz K. (2014). Constructing grounded theory. London: Sage.
  8. Contarello A. e Romaioli D. (2020). «Eccezioni alla regola» Rappresentazioni sociali dell’invecchiamento nel contesto italiano contemporaneo» [«Exceptions to the rule» Social representations of aging in the contemporary Italian context]. Psicologia Sociale, 15(3): 403-424. DOI: 10.1590/S0102-7182201100010001
  9. Dany L. and Abric J.C. (2007). Distance à l’objet et représentations du cannabis [Distance to the object and representations of cannabis]. Revue Internationale de Psychologie Sociale, 20(3): 77-104.
  10. DeFehr J. N., Sosa Infante C.L. and Lizama Valladares C.I. (2021). Dialogic social inquiry: Qualitative research without a methodological map. Taos Institute Publications.
  11. Doise W., Clemence A. and Lorenzi-Cioldi F. (1992). Représentations sociales et analyses de données [Social representations and data analysis]. Grenoble: Presses Universitaires de Grenoble.
  12. Fazekas B., Megaw B., Eade D. and Kronfeld N. (2021). Insights into the real-life experiences of people living with epilepsy: A qualitative netnographic study. Epilepsy & Behavior, 116, 107729.
  13. Ferreira M.C.G., Tura L.F.R., Silva R.C. and Ferreira M.A. (2017). Social representations of older adults regarding quality of life. Revista Brasileira de Enfermagem, 70(4): 806–813. DOI: 10.1590/0034-7167-2017-009
  14. Fisher R.S., Acevedo C., Arzimanoglou A., Bogacz A., Cross H., Elger C.E., Engel J.Jr., Forsgren L., French. J.A., Glynn M., Hesdorffer D.C., Lee B.I., Mathern J.W., Moshé S.L., Perucca E., Scheffer I.E., Tomson T., Watanabe M. e Wiebe S. (2014). ILAE official report. A clinical-practical definition of epilepsy. Epilepsia, 55(4): 475-482.
  15. Flick U. (2000). Episodic Interviewing. In: Bauer M. and Gaskell G., editors, Qualitative Researching with Text, Image and Sound: A Handbook (pp. 75-92). London: Sage.
  16. Flick U. (2018). An introduction to qualitative research. London: Sage.
  17. Gergen K.J. (2015). From mirroring to world-making: Research as future forming. Journal for the Theory of Social Behaviour, 45(3): 287-310.
  18. Gergen K.J. (2018). Costruzione sociale e pratiche terapeutiche. Dall’oppressione alla collaborazione. Milano: FrancoAngeli.
  19. Gyimesi J. (2022). Epilepsy, violence, and crime. A historical analysis. Journal of the History of the Behavioral Sciences, 58: 42-58. 
  20. Jacoby A. and Austin, J. K. (2007). Social stigma for adults and children with epilepsy. Epilepsia, 48: 6-9.
  21. Jodelet D. (2013). Place des représentations sociales dans l’education thérapeutique. Education Permanente, 195(2): 37-46.
  22. Jovchelovitch S. and Priego-Hernandez J. (2015). Cognitive polyphasia, knowledge encounters and public spheres. In G. Sammut, E. Androuli, G. Gaskell and J. Valsiner (eds.). The Cambridge handbook of social representations (pp. 163-178). Cambridge: Cambridge University Press.
  23. LICE (2019). White Paper on Epilepsy. UCB Pharma SpA.
  24. Magiorkinis E., Sidiropoulou K., Diamantis A. and Panteliadis C. (2009). Hallmarks in the history of epilepsy: epilepsy in antiquity. Epilepsy and Behavior, 17 (1): 103-108. DOI: 10.1155/2014/58203
  25. Mbelesso P., Luna J., Yangatimbi E., Mboukou C. and Preux P.M. (2019). Sociocultural representations of epilepsy in the Central African Republic: A door-to-door survey. Seizure, 67: 23-26.
  26. Moscovici S. (1961). La psychanalyse, son image et son public. Paris: Presses Universitaires de France.
  27. Moscovici S. (2000). Social representations, explorations in social psychology. Cambridge: Polity.
  28. Pack A.M. (2019). Epilepsy overview and revised classification of seizures and epilepsies. Continum Lifelong Learning in Neurology, 25(2): 306-321. DOI: 10.1212/CON.0000000000000707
  29. Palmonari A. e Emiliani F. (2009). I paradigmi delle rappresentazioni sociali. Bologna: Il Mulino.
  30. Rafael F., Dubreuil C.M., Burbaud F., Tran D.S., Clement J.P., Preux P.M. and Nubukpo P. (2009). Knowledge of epilepsy in the general population based on two French cities: Implications for stigma. Epilepsy and Behavior, 17 (1): 82-86.
  31. Rafael F., Dubreuil C., Prado J.A., Burbaud F., Clement J.P., Preux P.M. and Nubukpo P. (2010). Social and cultural representation of epilepsy in elderly aged 65 and more, during a community survey in two French departments (Hautevienne and Creuse). Annals of Neurosciences, 17(2): 60.
  32. Romaioli D. (2022). A generative sequential mixed methods approach. Using quantitative measures to enhance social constructionist inquiry. Journal of Mixed Methods Research, 16(2): 207-225. DOI: 10.1177/155868982098627
  33. Romaioli D. and Contarello A. (2019). «I’m too Old for...» looking into a self-Sabotage rhetoric and its counter-narratives in an Italian setting. Journal of Aging Studies, 48: 25-32.
  34. Sammut G. and Gaskell G. (2010). Points of view, social positioning and intercultural relation. Journal for the Theory of Social Behaviour, 40(1): 47-64.
  35. Scambler G. (2004). Re-framing stigma: felt and enacted stigma and challenges to the sociology of chronic and disabling conditions. Social Theory & Health, 2(1): 29-46.
  36. Scheffer I., Berkovic S., Capovilla G., Connolly M.B., French J., Guilhoto L., Hirsch E., Jain S., Mathern G.W., Moshé S.L., Nordli D.R., Perucca E., Tomson T., Wiebe S., Zhang Y.H. and Zuberi S.M. (2017). ILAE classification of the epilepsies: Position paper of the ILAE Commission for Classification and Terminology. Epilepsia, 58(4): 512–521.
  37. Schneider J. and Conrad P. (1983). Having epilepsy: The experience and control of illness. Philadelphia: Tample University Press.
  38. Scrimieri R. (2004). Le immagini dell’epilessia fra mito e scienza. Psychofenia, 8 (10): 171-190.
  39. Silva A.O. and Moriya T.M. (1998). A epilepsia e a Aids na concepção do conhecimento cotidiano [Epilepsy and AIDS in the conception of everyday knowledge]. São Paulo: Universidade de São Paulo.
  40. Sounga Bandzouzi, P. (2022). Sociocultural representations of epilepsy among students in Brazzaville. African & Middle East Epilepsy Journal, 9(5).
  41. Steiger B.K. and Jokeit H. (2017). Why epilepsy challenges social life. Seizure, 44: 194-198.
  42. Szemere E. and Jokeit H. (2015). Quality of life is social–towards an improvement of social abilities in patients with epilepsy. Seizure, 26: 12-21.
  43. Tran D., Odermatt P., Singphuoangphet S., Druet-Cabanac M., Preux P.M., Strobel M. and Barennes H. (2007). Epilepsy in Laos: Knowledge, attitudes, and practices in the community. Epilepsy e Behavior, 10(4): 565-570.
  44. Velasco V. e Vecchio L. (2012). La rappresentazione sociale del rischio: un’analisi quali-quantitativa delle sue dimensioni e della sua struttura. Psicologia della Salute, 2: 59-82.
  45. World Health Organization (2019). Epilepsy. Geneve: WHO publications.

Diego Romaioli, Luca Padovani, Antonia Oliveira Silva, Le rappresentazioni sociali dell’epilessia: un’indagine qualitativa nel contesto italiano contemporaneo in "PSICOLOGIA DELLA SALUTE" 3/2023, pp 41-63, DOI: 10.3280/PDS2023-003003