Journal of Korean Academy of Nursing (대한간호학회지)

Korean Society of Nursing Science (한국간호과학회)
권호 표지
DOI QR코드

DOI QR Code

Illness Experience of Married Korean Women with Epilepsy

우리나라 결혼여성 뇌전증 환자의 질병 체험

  • Shon, Young-Min (Department of Neurology, Samsung Medical Center, Sungkyunkwan University School of Medicine) ;
  • Joung, Woo Joung (Research Institute of Nursing Science, Seoul National University)
  • 손영민 (성균관대학교 의과대학 삼성서울병원 신경과) ;
  • 정우정 (서울대학교 간호과학연구소)
  • Received : 2016.10.25
  • Accepted : 2017.03.13
  • Published : 2017.06.30
Download PDF
⟨ Previous Next ⟩

Abstract

Purpose: The purpose of this study was to understand and describe the illness experience of married Korean women with epilepsy. Methods: Data were collected during 2015~2016 through individual in-depth interviews with 12 married women with epilepsy. Verbatim transcripts were analyzed using Giorgi's phenomenological analysis to uncover the meaning of the illness experience of the participants. Results: The study results showed that the illness experience of married Korean women with epilepsy was clustered into a specific description of situated structure and a general description of situated structure. Six themes from 20 meaning units were identified: 1) Undermined self-esteem with stigma of being epileptic; 2) Limited social interaction; 3) Suffering sorrow as a 'disqualified being'; 4) Shuttling back and forth across the boundary between healthy and epileptic; 5) Desperate struggle to meet the expectation of given role; 6) Self-empowering through self-restriction and realization. Conclusion: The findings from this study show that both the enacted and felt stigma of epilepsy impact on the life of married Korean women with epilepsy. Although the participants face social and interpersonal restriction and prejudices, they try their best to fulfill their role rather than to be cared for as patients. As the stigma and hardships of the participants are related to lack of knowledge, health professionals should focus not just on clinical intervention but also on providing targeted educational programs and counseling for these women to dispel the stigma of the disease and to increase their quality of life.

Keywords

References

  1. Korean Epilepsy Society. Epidemiological study of seizure and epilepsy using nationwide database for Corean epilepsy patients (ESSENCE). Seoul: Author; 2012.
  2. de Boer HM, Mula M, Sander JW. The global burden and stigma of epilepsy. Epilepsy & Behavior. 2008;12(4):540-546. http://dx.doi.org/10.1016/j.yebeh.2007.12.019
  3. Scambler G, Hopkins A. Being epileptic: Coming to terms with stigma. Sociology of Health and Illness. 1986;8(1):26-43. http://dx.doi.org/10.1111/1467-9566.ep11346455
  4. de Boer HM. Epilepsy stigma: Moving from a global problem to global solutions. Seizure. 2010;19(10):630-636. http://dx.doi.org/10.1016/j.seizure.2010.10.017
  5. Kim HD, Kang HC, Lee SA, Huh K, Lee BI. Changing name of epilepsy in Korea: Cerebroelectric disorder (noi-jeon-jeung): My epilepsy story. Epilepsia. 2014;55(3):384-386. http://dx.doi.org/10.1111/epi.12516
  6. Quintas R, Raggi A, Giovannetti AM, Pagani M, Sabariego C, Cieza A, et al. Psychosocial difficulties in people with epilepsy: A systematic review of literature from 2005 until 2010. Epilepsy & Behavior. 2012;25(1):60-67. http://dx.doi.org/10.1016/j.yebeh.2012.05.016
  7. Youn SY, Hong SB, Kwak JK. The relationship of stigma and quality of life in patients with epilepsy. Journal of Korean Epilepsy Society. 2001;5(2):172-176.
  8. Yoo JK, Jung KY, Park KW, Lee DH, Lee SK, Lee IK, et al. Familiarity with, understanding of, and attitudes toward epilepsy among people with epilepsy and healthy controls in South Korea. Epilepsy & Behavior. 2009;16(2):260-267. http://dx.doi.org/10.1016/j.yebeh.2009.07.025
  9. Park C, Lee J. Analysis of factors affecting the change of depression of Korean adult male and female. Health and Social Science. 2011;29:99-128.
  10. Cheng CY, Li Q. Integrative review of research on general health status and prevalence of common physical health conditions of women after childbirth. Women's Health Issues. 2008;18(4):267-280. http://dx.doi.org/10.1016/j.whi.2008.02.004
  11. Park MS. Quality of life of epilepsy(cerebral electrical disorder) disabled person. Journal of Disability and Welfare. 2014;24:83-108.
  12. Giorgi A. The descriptive phenomenological method in psychology: A modified Husserlian approach. Pittsburgh, PA: Duquesne University Press; 2009. p. 9-10.
  13. Giorgi A. Sketch of a psychological phenomenological method. In: Giorgi A, editor. Phenomenology and psychological research. Pittsburgh, PA: Duquesne University Press; 1985. p. 8-21.
  14. Patton MQ. Qualitative evaluation and research methods. 2nd ed. Newbury Park, CA: Sage; 1990. p. 70, 169.
  15. Morse JM. The significance of saturation. Qualitative Health Research. 1995;5(2):147-149. http://dx.doi.org/10.1177/104973239500500201
  16. Guba EG, Lincoln YS. Effective evaluation: Improving the usefulness of evaluation results through responsive and naturalistic approaches. San Francisco, CA: Jossey-Bass; 1981. p. 104.
  17. Singh G, Pauranik A, Menon B, Paul BS, Selai C, Chowdhury D, et al. The dilemma of arranged marriages in people with epilepsy. An expert group appraisal. Epilepsy & Behavior. 2016;61:242-247. http://dx.doi.org/10.1016/j.yebeh.2016.05.034
  18. Kim MK, Kwon OY, Cho YW, Kim Y, Kim SE, Kim HW, et al. Marital status of people with epilepsy in Korea. Seizure. 2010;19(9):573-579. http://dx.doi.org/10.1016/j.seizure.2010.09.006
  19. Jacoby A, Austin JK. Social stigma for adults and children with epilepsy. Epilepsia. 2007;48(Suppl 9):6-9. http://dx.doi.org/10.1111/j.1528-1167.2007.01391.x
  20. Guo W, Wu J, Wang W, Guan B, Snape D, Baker GA, et al. The stigma of people with epilepsy is demonstrated at the internalized, interpersonal and institutional levels in a specific sociocultural context: Findings from an ethnographic study in rural China. Epilepsy & Behavior. 2012;25(2):282-288. http://dx.doi.org/10.1016/j.yebeh.2012.08.013
  21. Raty LK, Wilde-Larsson BM. Patients' perceptions of living with epilepsy: A phenomenographic study. Journal of Clinical Nursing. 2011;20(13-14):1993-2002. http://dx.doi.org/10.1111/j.1365-2702.2010.03572.x
  22. Kale R. Bringing epilepsy out of the shadows. BMJ: British Medical Journal. 1997;315(7099):2-3. http://dx.doi.org/10.1136/bmj.315.7099.2
  23. Lee SA, Lee BI. Association of knowledge about epilepsy with mood and self-efficacy in Korean people with epilepsy. Epilepsy & Behavior. 2015;52(Pt A):149-153. http://dx.doi.org/10.1016/j.yebeh.2015.08.027
  24. Getnet A, Woldeyohannes SM, Bekana L, Mekonen T, Fekadu W, Menberu M, et al. Antiepileptic drug nonadherence and its predictors among people with epilepsy. Behavioural Neurology. 2016;2016:3189108. http://dx.doi.org/10.1155/2016/3189108
  25. Kim K, Hong J. A comparative study on attitudes towards family in Korea and Japan. Family and Culture. 2013;25(3):186-213. https://doi.org/10.21478/family.25.3.201309.007
  26. Wang YH, Haslam M, Yu M, Ding J, Lu Q, Pan F. Family functioning, marital quality and social support in Chinese patients with epilepsy. Health and Quality of Life Outcomes. 2015;13:10. http://dx.doi.org/10.1186/s12955-015-0208-6
  27. Murugupillai R, Wanigasinghe J, Muniyandi R, Arambepola C. Parental concerns towards children and adolescents with epilepsy in Sri Lanka-Qualitative study. Seizure. 2016;34:6-11. http://dx.doi.org/10.1016/j.seizure.2015.10.016
  28. Jacoby A, Ring A, Whitehead M, Marson A, Baker GA. Exploring loss and replacement of loss for understanding the impacts of epilepsy onset: a qualitative investigation. Epilepsy & Behavior. 2014;33:59-68. http://dx.doi.org/10.1016/j.yebeh.2014.02.015
  29. White M. A new movement in epilepsy care. WIN: World of Irish Nursing & Midwifery. 2012;20(3):26-27.
  30. Hopkins J, Irvine F. Qualitative insights into the role and practice of Epilepsy Specialist Nurses in England: A focus group study. Journal of Advanced Nursing. 2012;68(11):2443-2453. http://dx.doi.org/10.1111/j.1365-2648.2012.05941.x

Cited by

  1. 성인 뇌전증 환자의 건강관련 삶의 질 구조모형 vol.47, pp.5, 2017, https://doi.org/10.4040/jkan.2017.47.5.624