Clinical and Experimental Pediatrics

The Korean Pediatric Society (대한소아청소년과학회)
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Mediating effect of perceived stigma against epilepsy on quality of life among parents with epileptic child

간질아동 부모의 삶의 질에 대한 지각된 낙인의 매개효과

  • Kim, Nho Eun (Alcohol Project Supporting Committee) ;
  • Cho, Sung Min (Department of Pediatrics, Dongguk University International Hospital, College of Medicine, Dongguk University) ;
  • Kim, Dong Wook (Department of Pediatrics, Ilsan Paik Hospital, College of Medicine, Inje University)
  • 김노은 (알코올사업기술지원단) ;
  • 조성민 (동국대학교 의과대학 소아과학교실) ;
  • 김동욱 (인제대학교 의과대학 소아과학교실)
  • Received : 2009.05.22
  • Accepted : 2009.09.01
  • Published : 2009.09.15
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Abstract

Purpose:Epilepsy of child may cause high level of psychosocial difficulties for parents including stigmatization and stress and therefore worsen their quality of life (QOL). The purpose of this study was to evaluate the mediating effect of perceived stigma against epilepsy on QOL among parents with epileptic child. Methods:Two hundred and sixty parents of epileptic child recruited from five separated university hospital child neurology clinics specializing in epilepsy completed a demographic questionnaire, a medical questionnaire, a perceived stigma questionnaire and the Ro's Quality of Life Inventory, a popular tool for evaluating QOL of adults in Korea which is composed of 6 domains and 47 questions. Data was analyzed with SPSS 14.0 program using frequency analysis and descriptive analysis and with AMOS 7.0 program using Structural Equation Model (SEM) analysis. Results:The level of parents' QOL was relatively fair. SEM analysis on the quality of life level of parents showed that all variables (especially having religion, the monthly income, employment state, age of child, the leisure time, the perceived stigma level against epilepsy, and seizure frequency) directly affect the quality of life level of parents and that disease-related variables also affect the quality of life level of parents indirectly through the mediating factor (the perceived stigma), where the indirect effect is large with the existence of combined disabilities. The total effect on the quality of life level of parents is large with the existence of combined disabilities, the perceived stigma level, the leisure time, having religion, and the monthly income. Conclusion:The results of this study indicated that many factors including parents' perceived stigma may affect the quality of life of parents with epileptic children directly, and that some disease-related factors may affect indirectly through a mediating factor, the perceived stigma. Multidisciplinary collaboration would be imperative for their welfare.

목 적:간질아동의 치료과정에서 이들을 돌보는 부모들은 스트레스, 사회적 낙인 등으로 인한 정신사회적 곤란으로 삶의 질이 저하될 수 있다. 따라서 본 연구는 간질아동 부모들의 간질에 대한 지각된 낙인과 삶의 질을 평가하고 지각된 낙인이 간질아동의 질병관련 변수들과 삶의 질 사이에서 매개변수로 작용하는지 조사하고자 하였다. 방 법:경기, 부산, 대구, 경북 소재 5개 대학병원의 소아간질클리닉에서 간질로 진단받고 치료중인 간질아동의 부모 260명을 대상으로 지각된 낙인과 삶의 질 측정도구 등 구조화된 설문조사를 실시한 후 통계학적으로 분석하였다. 결 과:부모들의 삶의 질 수준은 비교적 양호하게 나타났으며 지각된 낙인이 간질아동의 질병관련 변수들과 삶의 질 사이에서 매개변수로 작용함을 확인하였다. 지각된 낙인, 고용 여부, 월수입, 종교 유무, 여가시간은 간질아동 부모의 삶의 질에 직접적으로 영향을 미치는 것으로 나타났고, 간질아동의 질병관련 변수들인 동반장애 유무 및 경련의 빈도는 매개변수인 지각된 낙인을 통해 간접효과를 미치는 것으로 나타났다. 총인과 효과는 동반장애 유무, 지각된 낙인, 고용여부, 월수입 순으로 크게 나타나 지각된 낙인의 매개효과가 매우 중요함을 알 수 있었다. 결 론:간질아동 부모들의 삶의 질이 다양한 사회경제적 요인 및 아동의 의학적 요인에 의해 영향 받으며 간질에 대한 지각된 낙인의 역할이 중요함을 알 수 있었고, 그들의 삶의 질 향상을 위해서는 다학문간의 공동 노력이 필요할 것으로 보인다.

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References

  1. Baker GA., Brooks J, Buck D, Jacoby A. The stigma of epilepsy: a European perspective. Epilepsia 1999;41:98-104 https://doi.org/10.1111/j.1528-1157.2000.tb01512.x
  2. Ellis N, Upton D, Thompson P. Epilepsy and the family: a review of current literature. Seizure 2000;9:22-30 https://doi.org/10.1053/seiz.1999.0353
  3. Thompson P and Upton D. The impact of chronic epilepsy on the family. Seizure 1992;1:43-8 https://doi.org/10.1016/1059-1311(92)90054-5
  4. Camfield C, Breau L, Camfield P. Impact of pediatric epilepsy on the family: a new scale for clinical and research use. Epilepsia 2001;42:104-12 https://doi.org/10.1046/j.1528-1157.2001.081420.x
  5. Laybourn A and Hill M. Children with epilepsy and their families: needs and services. Child Care Health Dev 1994;20: 1-14 https://doi.org/10.1111/j.1365-2214.1994.tb00370.x
  6. Miller R. The effect on parents of febrile convulsions. Paediatr Nurs 1996;8:28-31
  7. Kim BY. Mothers' stress in families with epileptic children. Journal of Korean Society of Child Welfare 2002;14:37-63
  8. Kim BY, Cho SM. A comparative study of parental stress in families with epileptic children. J Korean Pediatr Soc 2002; 45:1251-62
  9. Joachim G, Acorn S. Stigma of visible and invisible chronic conditions. J Adv Nurs 2000;32:243-8 https://doi.org/10.1046/j.1365-2648.2000.01466.x
  10. Tsutsumi A, Izutsu T, Islam AM, Maksuda AN, Kato H, Wakai S. The quality of life, mental health, and perceived stigma of leprosy patients in Bangladesh. Soc Sci Med 2007; 64:2443-53 https://doi.org/10.1016/j.socscimed.2007.02.014
  11. Seo MK, Kim CN. Effects of perceived stigma on life satisfaction and self-esteem of the mental illness. Korean Journal of Social Welfare 2004;56:173-94
  12. Dancey CP, Hutton-Young SA, Moye S, Devins GM. Perceived stigma, illness intrusiveness and quality of life in men and women with irritable bowel syndrome. Psychol Health Med 2002;7:381-95 https://doi.org/10.1080/1354850021000015203
  13. Buseh AG, Kelber ST, Hewitt JB, Stevens PE, Park CG. Perceived Stigma and Life Satisfaction: Experiences of Urban African American Men Living with HIV/AIDS. Int J Mens Health 2007;5:35-51 https://doi.org/10.3149/jmh.0501.35
  14. Vardy D, Besser A, Amir M, Gesthalter B, Biton A, Buskila D. Experiences of stigmatization play a role in mediating the impact of disease severity on quality of life in psoriasis patients. Br J Dermatol 2002;147:736-42 https://doi.org/10.1046/j.1365-2133.2002.04899.x
  15. Yanos PT, Rosenfield S, Horwitz AV. Negative and Supportive Social Interactions and Quality of Life Among Persons Diagnosed with Severe Mental Illness. Community Ment Health J 2001;37:405-19 https://doi.org/10.1023/A:1017528029127
  16. Muhlbauer S. Experience of stigma by families with mentally ill members. J Am Psychiatr Nurses Assoc 2002;8:76-83 https://doi.org/10.1067/mpn.2002.125222
  17. Jacoby A. Epilepsy and the quality of everyday life. Findings from a study of people with well-controlled epilepsy. Soc Sci Med 1992;34:657-66 https://doi.org/10.1016/0277-9536(92)90193-T
  18. Bishop ML. The relationship of social, psychological, physical, and seizure.related variables to quality of life in adults with epilepsy (Doctoral Dissertation). Madison (WI): Univ. of Wisconsin, 2000
  19. Jacoby A. Felt versus enacted stigma: A concept revised evidence from a study of people with epilepsy in remission. Soc Sci Med 1994;38:269-74 https://doi.org/10.1016/0277-9536(94)90396-4
  20. Ro YJ. An analytical study on the quality of life of the middle-aged in Seoul (Doctoral dissertation). Seoul: Yonsei University, 1988
  21. Youn SY, Hong SB, Kwak JK. The relationship of stigma and quality of life in patients with epilepsy. J Korean Epilep Soc 2001;5:172-6
  22. Lee JW. Quality of life of mothers with cerebral palsy children and influencing factors. Journal of the Korean Society of Maternal and Child Health 2000;4:47-54
  23. Choe MA, Lee HS, Kim DH, Park MH, Yoon SY, Cho YH, et al. The study on the quality of life for the mothers of hospitalized chronic pediatric patients. Journal of Korean Academy of Child Health Nursing 2000;6:249-61
  24. Aytch LS, Hammond R, White C. Seizures in infants and young children; An exploratory study of family experiences and needs for information and support. J Neurosci Nurs 2001;33:278-85
  25. Cho SM, Kwon SH, Kim DK, Kim JS, Kim JK, Moon HK, et al. The experience of the 1st Daegu-Gyeongbuk multicenter epilepsy camp for children and their parents to improve the understanding of epilepsy. J Korean Child Neurol Soc 2006; 14:303-9
  26. Byun YC, Kim SH, Yoon SY, Choi MY, Gye HB, Kwon SJ, et al. National survey on persons with disabilities, 2005. Seoul: Korea Institute for Health and Social Affairs, 2006