A lay carer's story about epilepsy in an urban South African context: They call it an illness of falling or an illness of fitting because a person shakes and eventually falls

Epilepsy and Behavior

Volumn 28, Issue 3, 2013, Pages 512-518

  Keikelame, Mpoe Johannah ^a,b   Swartz, Leslie ^b  

^a UNIVERSITY OF CAPE TOWN   (South Africa)

^b STELLENBOSCH UNIVERSITY   (South Africa)

Author keywords

Epilepsy; Explanatory models; Illness narratives; Lay carer; Qualitative study; South Africa

Indexed keywords

AGED; ARTICLE; CULTURAL ANTHROPOLOGY; ECONOMIC ASPECT; EPILEPSY; ETHNOGRAPHIC RESEARCH; HEALTH PROMOTION; HUMAN; MALE; PERSONAL EXPERIENCE; POLITICS; PSYCHOLOGICAL ASPECT; SEMI STRUCTURED INTERVIEW; SOCIAL CLASS; SOUTH AFRICA; URBAN AREA;

EPILEPSY; EXPLANATORY MODELS; ILLNESS NARRATIVES; LAY CARER; QUALITATIVE STUDY; SOUTH AFRICA;

ACCIDENTAL FALLS; AGED; CAREGIVERS; CULTURE; EPILEPSY; HUMANS; MALE; SOUTH AFRICA; URBAN POPULATION;

EID: 84881377147     PISSN: 15255050     EISSN: 15255069     Source Type: Journal    
DOI: 10.1016/j.yebeh.2013.05.025     Document Type: Article

References (64)

1. Good B.J., Good M.D.V. In the subjunctive mode: epilepsy narratives in Turkey. Soc Sci Med 1994, 38(6):835-842.
2. Reverby S.M. The art of medicine: listening to narratives from the Tuskegee syphilis study. Lancet 2011, 377(14):1646-1647. [Available from: www.thelancet.com.].
3. Sandelowski M. Telling stories: narrative approaches in qualitative research. Image J Nurs Sch 1991, 23(3):161-166.
4. Hydén L. Illness and narrative. Sociol Health Illn 1997, 19(1):48-69.
5. Brosch L. Narratives of living with epilepsy diagnosed in adulthood. A thesis submitted in partial fulfilment of the doctorate in clinical psychology June 2011, 86. University of Hertfordshire, [Chapter 4].
6. Naidoo S, Irlam J. Vanguard community health centre in context: a situational analysis of the health facility and the communities of Bonteheuwel and Langa. Unpublished report, University of Cape Town: Primary Health Care Directorate, 2005.
7. Spangenberg J.J., Lalkhen N. Children with epilepsy and their families: psychosocial issues. S Afr Fam Pract 2006, 48(6):60-63.
8. Ackermann S., Van Toorn R. Managing first-time seizures and epilepsy in children. CME 2011, 29(4):142-148.
9. Eastman R. Epilepsy in South Africa. Acta Neurol Scand 2005, 112(Suppl. 181):8-11.
10. Frank A. Letting stories breathe: a socio-narratology 2012, University of Chicago Press, Chicago.
11. Charon R. Narrative medicine: honouring the stories of illness 2008, Oxford University Press, New York.
12. Ziebland S. Narrative interviewing. Understanding and using health experiences: improving patient care 2013, Oxford University Press, New York. S. Ziebland, A. Coulter, J.D. Calabrese, L. Locock (Eds.).
13. Kleinman A. The illness narratives: suffering, healing and the human condition 1989, Basic Books, New York.
14. Buus N., Johannessen H., Stage K.B. Explanatory models of depression and treatment adherence to antidepressant medication: a qualitative interview study. Int J Nurs Stud 2012, 49:1220-1229.
15. Helman C.G. Culture, health and illness 2007, Hodder Arnold, United Kingdom. 5th ed.
16. Niemi M.E., Falkenberg T., Nguyen M.T.T., Nguyen M.T.N., Patel V., Faxelid E. The social contexts of depression during motherhood: a study of explanatory models in Vietnam. J Affect Disord 2010, 124:29-37.
17. Biering P. Adapting the concept of explanatory models of illness to the study of youth violence. J Interpers Violence 2007, 22(7):791-811.
18. Bhasin V. Medical anthropology: a review. Ethno-Med 2007, 1(1):1-20.
19. Daack-Hirsch S., Gamboa H. Filipino explanatory models of cleft lip with or without cleft palate. Cleft Palate Craniofac J 2010, 47(2):122-133.
20. Ghane S., Kolk A.M., Emmelkamp P.M.G. Assessment of explanatory models of mental illness: effects of patient and interviewer characteristics. Soc Psychiatr Epidemiol 2010, 45:175-182.
21. Patel V. Explanatory models of mental illness in sub-Saharan Africa. Soc Sci Med 1995, 40(9):1291-1298.
22. Zhu L., Liu G., Tardif T. Chinese children's explanations for illness. Int J Behav Dev 2009, 33(6):516-519.
23. McCabe R., Priebe S. Explanatory models of illness in schizophrenia: comparison of four ethnic groups. Br J Psychiatry 2004, 185:25-30.
24. Patton M.Q. Qualitative evaluation and research methods 2002, Sage, Newbury Park. 2nd ed.
25. Ulin P.R., Robinson E.T., Tolley E.E., McNeill E.T. Qualitative methods: a field guide for applied research in sexual and reproductive health 2002, Family Health International, USA.
26. Kleinman A., Benson P. Anthropology in the clinic: the problem of cultural competency and how to fix it. PLoS Med 2006, 3(10):1673-1676.
27. The research process in nursing 2010, Wiley-Blackwell, United Kingdom. 6th ed. K. Gerrish, A. Lacey (Eds.).
28. Babbie E., Mouton J. The practice of social research 2001, Oxford University Press, Cape Town.
29. Punch K.F. Introduction to research methods in education 2009, Sage, London.
30. Handbook of qualitative research 2000, Sage, Thousand Oaks. N.K. Denzin, Y.S. Lincoln (Eds.).
31. Kapborg I., Berterö C. Using an interpreter in qualitative interviews: does it threaten validity?. Nurs Inq 2002, 9(1):52-56.
32. Jacoby A., Wang W., Dang Vu T., Wu J., Snape D., Aydemir N., et al. Meanings of epilepsy in its socio-cultural context and implications for stigma: findings from ethnographic studies in local communities in China and Vietnam. Epilepsy Behav 2008, 12:286-297.
33. Flick U. An introduction to qualitative research 2006, Sage, London. 3rd ed.
34. Braun V., Clarke V. Using thematic analysis in psychology. Qual Res Psychol 2006, 3(2):77-101.
35. Haidet P., O'Malley K.J., Sharf B.F., Gladney A.P., Greisinger A.J., Street R.L. Characterizing explanatory models of illness in healthcare: development and validation of the CONNECT instrument. Patient Educ Couns 2008, 73:232-239.
36. Priest H., Roberts P., Woods L. An overview of three different approaches to the interpretation of qualitative data. Part 1: theoretical issues. Nurse Res 2002, 10(1):30-42.
37. Shenton A.K. Strategies for ensuring trustworthiness in qualitative research projects. Educ Inform 2004, 22:63-75.
38. Keikelame MJ. An investigation of a group of Khayelitsha parents' understanding of the causes and management of their children's epilepsy. Unpublished minor dissertation, University of Cape Town: Faculty of Education, 1998.
39. Komolafe M.A., Sunmonu T.A., Fabusiwa F., Komolafe E.O., Afolabi O., Kett M., et al. Women's perspectives on epilepsy and its sociocultural impact in south western Nigeria. Afr J Neurol Sci 2011, 30(2):39-47.
40. Mushi D., Hunter E., Mtuya C., Mshana G., Aris E., Walker R. Social-cultural aspects of epilepsy in Kilimanjaro region Tanzania: knowledge and experience among patients and carers. Epilepsy Behav 2011, 20:338-343.
41. Kendall-Taylor N., Kathomi C., Rimba K., Newton C.R. Traditional healers and epilepsy treatment on the Kenyan coast. Epilepsia 2008, 49(9):1638-1639.
42. Millogo A., Ratsimbazafy V., Nubupko P., Barro S., Zongo I., Preux P.M. Epilepsy and traditional medicine in Bobo-Dioulasso (Burkina Faso). Acta Neurol Scand 2004, 109:250-254.
43. Mugumbate J., Mushonga J. Myths, perceptions and incorrect knowledge surrounding epilepsy in rural Zimbabwe: a study of the villagers in Buhera District. Epilepsy Behav 2013, 27:144-147.
44. Njamnshi A.K., Tabah E.N., Yepnjio F.N., Angwafor S.A., Dema F., Fonsah J.Y., et al. General public awareness, perceptions and attitudes with respect to epilepsy in the Akwaya Health District, south-west region, Cameroon. Epilepsy Behav 2009, 15:179-185.
45. Ekenze O.S., Ndukuba A.C. Perception of epilepsy among public workers: perspectives from a developing country. Epilepsy Behav 2013, 26:87-90.
46. Osungbade K.O., Siyanbade S.L. Myths, misconceptions and misunderstandings about epilepsy in a Nigerian rural community: implications for community health interventions. Epilepsy Behav 2011, 21:425-429.
47. Fernandes P.T., Snape D.A., Beran R.G., Jacoby A. Epilepsy stigma: what do we know and where next?. Epilepsy Behav 2011, 22:55-62.
48. Mushi D., Burton K., Mtuya C., Gona J.K., Walker R., Newton C.R.J.C. Perceptions, social life, treatment and education gap of Tanzanian children with epilepsy: a community-based study. Epilepsy Behav 2012, 23:224-229.
49. Allotey P., Reidpath D. Epilepsy, culture, identity and well-being: a study of the social, cultural and environmental context of epilepsy in Cameroon. J Health Psychol 2007, 12(3):431-443.
50. Pretorius E. Complementary/alternative and traditional health care in South Africa. Health and health care in South Africa 2004, 506-560. Van Schaick, Pretoria. H.C.J. van Rensberg (Ed.).
51. Mathews M., Mammen K.J., Mammen M. Myths and beliefs about the acquisition of taeniasis and cysticercosis amongst the Xhosa University students in South Africa. Ethno-Med 2012, 6(3):197-206.
52. Magee A.R., Van Wyk B.E., Van Vuuren S.F. Ethnobotany and antimicrobial activity of sieketroos (Arctopus species). S Afr J Bot 2007, 73:159-162.
53. van Wyk B.E. A review of Khoi-San and Cape Dutch medical ethnobotany. J Ethnopharmacol 2008, 119:331-341.
54. Thompson P.J., O'Toole A. Psychosocial outcome. Epilepsy from the benchside to bedside: a practical guide to epilepsy 2009, 367-371. ILAE & National Society for Epilepsy, Oxford. 12th ed. J.W. Sander, F.J. Rugg-Gunn, J.E. Smalls (Eds.).
55. Collins T.B.K., Camfield P.R., Camfield C.S., Lee K. People with epilepsy are often perceived as violent. Epilepsy Behav 2007, 10:69-76.
56. McCagh J., Fisk J.E., Baker G.A. Epilepsy, psychosocial and cognitive functioning. Epilepsy Res 2009, 86:1-14.
57. Coovadia H., Jewkes R., Barron P., Sanders D., McIntyre D. The health and health system of South Africa: historical roots of current public health challenges. Lancet 2009, 1-17. [Available from: www.thelancet.com]. 10.1016/S0140-6736(09)60951-x.
58. Vearey J., Nunez L. Migration and health in South Africa: a review of the current situation and recommendations for achieving the World Health Assembly Resolution on the health of migrants 2010, 6-12. [Available from: www.iom.org.za].
59. Akinsulore A., Adewuya A. Psychosocial aspects of epilepsy in Nigeria: a review. Afr J Psychiatry 2010, 13:351-358.
60. Taha A.Y., Ciobanu F.A., Saxena A., et al. Assessing the link between omega-3 fatty acids, cardiac arrest and sudden unexpected death in epilepsy. Epilepsy Behav 2009, 14:27-31.
61. Scorza F.A., Arida R.M., Terra V.C., Cavalheiro E.A. What can be done to reduce the risk of SUDEP?. Epilepsy Behav 2010, 18:137-138.
62. Scorza F.A., Lopes A.C., Cysneiros R.M., Arida R.M., e Silva M.R. The promise of omega-3 against sudden unexpected death in epilepsy: until further notice it remains innocent until proven guilty. Arq Neuropsiquiatr 2013, 71(1):51-54.
63. Darghouth S., Pedersen D., Bibeau G., Rousseau C. Painful languages of the body: experiences of headache among women in two Peruvian communities. Cult Med Psychiatry 2006, 30:271-297.
64. Räty L.K.A., Larsson G., Starrin B., Larsson B.M.W. Epilepsy patients' conceptions of epilepsy as a phenomenon. J Neurosci Nurs 2009, 41(4):201-210.