Journal of Korean Academy of Nursing (대한간호학회지)

Korean Society of Nursing Science (한국간호과학회)
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Hermeneutic Phenomenological Study on Caring Experience of the Mothers of Children with Epilepsy

뇌전증 자녀를 둔 어머니의 돌봄 체험에 관한 해석학적 현상학 연구

  • Joung, Woo Joung (Research Institute of Nursing Science.Seoul National University) ;
  • Yi, Myungsun (College of Nursing, Research Institute of Nursing Science Seoul National University)
  • 정우정 (서울대학교 간호과학 연구소) ;
  • 이명선 (서울대학교 간호대학)
  • Received : 2016.07.22
  • Accepted : 2016.11.21
  • Published : 2017.02.28
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Abstract

Purpose: The purpose of this study was to develop a deeper understanding of the experience of mothers caring for children with epilepsy. Methods: Data were collected through individual in-depth interviews and observation from 12 mothers of children with epilepsy. Data were collected from December, 2014 to February, 2015 and analyzed using van Manen's hermeneutic phenomenological methodology to identify essential themes of their experience. Results: The essential themes that fit into the context of the 4-existential grounds of time, body, other people, and space were: Lived time-ongoing influence of the past, living in insecure present, fearful future with no answer; Lived body-bonded body, burned out state; Lived other-burden but also support, shrunken down; Lived space-narrowed range of activity, widened horizon. Conclusion: The findings in this study show in-depth understanding of the hardships of mothers who are caring for children with epilepsy. The beauty and greatness of these mothers are revealed through the analysis of various phenomenological materials such as literary and artistic work reflecting socio-cultural context, as well as vivid care experiences of mothers of children with epilepsy. This will be helpful in increasing understanding of the nature of caregivers' experience for medical professionals dealing with patients and caregivers. Also it helps to improve the understanding of the disease among the general public, followed by a more warming and caring attitude towards patients and family members. Finally, it will enhance psychological well-being and overall quality of life of the epileptic children and their families.

Keywords

References

  1. Korean Epilepsy Society. Epidemiological study of seizure and epilepsy using nationwide database for Corean epilepsy patients. Seoul: Author; 2012.
  2. Kim HD, Kang HC, Lee SA, Huh K, Lee BI. Changing name of epilepsy in Korea; cerebroelectric disorder (noi-jeon-jeung, 뇌 전증, 腦電症): My epilepsy story. Epilepsia. 2014;55(3):384-386. http://dx.doi.org/10.1111/epi.12516
  3. Lv R, Wu L, Jin L, Lu Q, Wang M, Qu Y, et al. Depression, anxiety and quality of life in parents of children with epilepsy. Acta Neurologica Scandinavica. 2009;120(5):335-341. http://dx.doi.org/10.1111/j.1600-0404.2009.01184.x
  4. Wirrell EC, Wood L, Hamiwka LD, Sherman EM. Parenting stress in mothers of children with intractable epilepsy. Epilepsy & Behavior. 2008;13(1):169-173. http://dx.doi.org/10.1016/j.yebeh.2008.02.011
  5. Elafros MA, Sakubita-Simasiku C, Atadzhanov M, Haworth A, Chomba E, Birbeck GL. Stigma and psychiatric morbidity among mothers of children with epilepsy in Zambia. International Health. 2013;5(4):288-294. http://dx.doi.org/10.1093/inthealth/iht028
  6. Rodenburg R, Wagner JL, Austin JK, Kerr M, Dunn DW. Psychosocial issues for children with epilepsy. Epilepsy & Behavior. 2011;22(1):47-54. http://dx.doi.org/10.1016/j.yebeh.2011.04.063
  7. Jan MM. Intractable childhood epilepsy and maternal fatigue. The Canadian Journal of Neurological Sciences. 2006;33(3):306-310. https://doi.org/10.1017/S0317167100005187
  8. Kim SH. A grounded theory-based approach to the experiences of the mothers of children with epilepsy [dissertation]. Busan: Pusan National University; 2009. p. 1-144.
  9. van Manen M. Researching lived experience: Human science for an action sensitive pedagogy. Albany, NY: State University of New York Press; 1990. p. 1-173.
  10. Kwon JY. International practical Chinese characters by the picture and explanation. Seoul: Sujiseolim; 2000.
  11. Doosandonga Editorial Board. Dong-A new Korean dictionary. Seoul: Dong-A Publishing & Printing; 2007.
  12. Dictionary.com, LLC. Epilepsy: Define epilepsy at Dictionary. com [Internet]. Austin, TX: Author; 2016 [cited 2016 July 19]. Available from: http://www.dictionary.com/browse/epilepsy?s=t.
  13. Beauchard D. Epileptic. Lee SJ, translator. Paris, FR: L'Association; 1996-2003.
  14. Abrahams J. First do no harm [Film]. Los Angeles, CA: Pebblehut Productions, Inc./Jaffe Braunstein Films, Ltd.; 1997.
  15. Patton MQ. Qualitative research and evaluation methods. 2nd ed. Thousand Oaks, CA: Sage; 1990. p. 169.
  16. Lincoln YS, Guba EG. Naturalistic inquiry. Newbury Park, CA: Sage; 1985. p. 289-331.
  17. Kale R. Bringing epilepsy out of the shadows. BMJ: British Medical Journal. 1997;315(7099):2-3. https://doi.org/10.1136/bmj.315.7099.2
  18. Patsalos PN, Perucca E. Clinically important drug interactions in epilepsy: General features and interactions between antiepileptic drugs. The Lancet Neurology. 2003;2(6):347-356. https://doi.org/10.1016/S1474-4422(03)00409-5
  19. Modi AC, Rausch JR, Glauser TA. Patterns of nonadherence to antiepileptic drug therapy in children with newly diagnosed epilepsy. JAMA: Journal of the American Medical Association. 2011;305(16):16691676. http://dx.doi.org/10.1001/jama.2011.506
  20. Kang SY. Life experiences of mothers in parenting children with Hunter's syndrome. Journal of Korean Academy of Nursing. 2012;42(5):609-621. http://dx.doi.org/10.4040/jkan.2012.42.5.609
  21. Kim HY, Eom CH. Search for humanities therapy utilizing oral history: Memory, trauma and history therapy. Studies in Humanities. 2010;24:361-383.
  22. Ryan S, Raisanen U. "The brain is such a delicate thing": An exploration of fear and seizures among young people with epilepsy. Chronic Illness. 2012;8(3):214-224. http://dx.doi.org/10.1177/1742395312449666
  23. Akay AP, Kurul SH, Ozek H, Cengizhan S, Emiroglu N, Ellidokuz H. Maternal reactions to a child with epilepsy: Depression, anxiety, parental attitudes and family functions. Epilepsy Research. 2011;95(3):213-220. http://dx.doi.org/10.1016/j.eplepsyres.2011.03.020
  24. Higgins S. Outlining and defining the role of the epilepsy specialist nurse. British Journal of Nursing. 2008;17(3):154-157. http://dx.doi.org/10.12968/bjon.2008.17.3.28403
  25. 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
  26. Heidegger M. Being and time. Macquarrie J, Robinson E, translator. T binge, DE: Max Niemeyer Verlag; 1927.
  27. Kong BH. Existential phenomenology and the practice of caring. Journal of Korean Academy of Nursing Administration. 2013;19(1):138-145. http://dx.doi.org/10.11111/jkana.2013.19.1.138