DOI QR코드

DOI QR Code

Life Experience of Patients suffering from Crohn's Disease

크론병 환자의 삶의 경험

  • Yoo, Yang-Sook (College of Nursing, The Catholic University of Korea) ;
  • Lee, Eun-Ju (Graduate School, The Catholic University of Korea) ;
  • Cho, Ok-Hee (College of Nursing, Jeju National University)
  • Received : 2012.04.12
  • Accepted : 2013.04.19
  • Published : 2013.06.30

Abstract

Purpose: The purpose of this study was to describe and explore the experience process of life of patients with Crohn's disease. Methods: Using a grounded theory methodology, 24 interviews were performed with 7 men and 5 women, 17-47 years of age, suffering from Crohn's disease. Results: 'Tuning of two conflicting lives' was identified as the core category, and 5 subcategories were identified and they were integrated into the core category. The identified outcomes were 'Living a withdrawn life', 'coping flexibly', 'drifting with tangled emotions' and 'maintaining long-term remission'. Conclusion: When caring for these patients, it is important to identify needs, allow patients to express what they want at that moment and support them in maintaining a daily life that can be perceived as normal.

Keywords

References

  1. Angelberger, S., Vogelsang, H., Novacek, G., Miehsler, W., Dejaco, C., Gangl, A., et al. (2009). Public awareness of Crohn's disease and ulcerative colitis: A national survey. Journal of Crohn's & Colitis, 3(3), 157-161. http://dx.doi.org/10.1016/j.crohns.2009.01.003
  2. Cohen, D., Bin, C. M., & Fayh, A. P. (2010). Assessment of quality of life of patients with inflammatory bowel disease residing in Southern Brazil. Arquivos de Gastroenterologia, 47(3), 285-289.
  3. Cohen, R. D. (2002). The quality of life in patients with Crohn's disease. Alimentary Pharmacology and Therapeutics, 16(9), 1603-1609. https://doi.org/10.1046/j.1365-2036.2002.01323.x
  4. Cooper, J. M., Collier, J., James, V., & Hawkey, C. J. (2010). Beliefs about personal control and self-management in 30-40 year olds living with inflammatory bowel disease: A qualitative study. International Journal of Nursing Studies, 47(12), 1500-1509. http://dx.doi.org/10.1016/j.ijnurstu.2010.05.008
  5. Corbin, J., & Strauss, A. (2008). Basics of qualitative research: Techniques and procedures for developing grounded theory (3rd ed.). Thousand Oaks, CA: SAGE Publications.
  6. Cosnes, J., Gower-Rousseau, C., Seksik, P., & Cortot, A. (2011). Epidemiology and natural history of inflammatory bowel diseases. Gastroenterology, 140(6), 1785-1794. http://dx.doi.org/10.1053/j.gastro.2011.01.055
  7. Fletcher, P. C., Schneider, M. A., Van Ravenswaay, V., & Leon, Z. (2008). I am doing the best that I can!: Living with inflammatory bowel disease and/ or irritable bowel syndrome (part II). Clinical Nurse Specialist, 22(6), 278-285. http://dx.doi.org/10.1097/01.NUR.0000325382.99717.ac
  8. Gibson, P. R., Weston, A. R., Shann, A., Florin, T. H., Lawrance, I. C., Macrae, F. A., et al. (2007). Relationship between disease severity, quality of life and health-care resource use in a cross-section of Australian patients with Crohn's disease. Journal of Gastroenterology and Hepatology, 22(8), 1306-1312. http://dx.doi.org/10.1111/j.1440-1746.2007.04930.x
  9. Graff, L. A., Walker, J. R., Clara, I., Lix, L., Miller, N., Rogala, L., et al. (2009). Stress coping, distress, and health perceptions in inflammatory bowel disease and community controls. American Journal of Gastroenterology, 104(12), 2959-2969. http://dx.doi.org/10.1038/ajg.2009.529
  10. Guba, E. G., & Lincoln, Y. S. (1981). Effective evaluation. San Francisco, CA: Jossey-Bass Publishers.
  11. Hall, N. J., Rubin, G. P., Dougall, A., Hungin, A. P., & Neely, J. (2005). The fight for 'health-related normality': A qualitative study of the experiences of individuals living with established inflammatory bowel disease (ibd). Journal of Health Psychology, 10(3), 443-455. http://dx.doi.org/10.1177/1359105305051433
  12. Irvine, E. J. (2004). Review article: Patients' fears and unmet needs in inflammatory bowel disease. Alimentary Pharmacology and Therapeutics, 20(Suppl 4), 54-59. http://dx.doi.org/10.1111/j.1365-2036.2004.02053.x
  13. Jeon, S. J., Lee, K. J., Lee, M. H., Lim, S. K., Kang, C. J., & Kim, J. H. (2010). Rates of early surgery and associated risk factors in Crohn's disease. The Korean Journal of Gastroenterology, 56(4), 236-241. https://doi.org/10.4166/kjg.2010.56.4.236
  14. Jones, M. P., Wessinger, S., & Crowell, M. D. (2006). Coping strategies and interpersonal support in patients with irritable bowel syndrome and inflammatory bowel disease. Clinical Gastroenterology and Hepatology, 4(4), 474-481. http://dx.doi.org/10.1016/j.cgh.2005.12.012
  15. Juan, J., Estiarte, R., Colomé, E., Artés, M., Jiménez, F. J., & Alonso, J. (2003). Burden of illness of Crohn's disease in Spain. Digestive and Liver Disease, 35(12), 853-861. https://doi.org/10.1016/j.dld.2003.07.002
  16. Kim, Y. N. (2010). A study on the quality of life of the patients with Crohn's disease. Unpublished master' thesis, Chung-Ang University, Seoul.
  17. Larsson, K., Loof, L., Ronnblom, A., & Nordin, K. (2008). Quality of life for patients with exacerbation in inflammatory bowel disease and how they cope with disease activity. Journal of Psychosomatic Research, 64(2), 139-148. http://dx.doi.org/10.1016/j.jpsychores.2007.10.007
  18. Lee, S. A. (2010). Stress and health-related quality of life in patients with inflammatory bowel desease. Unpublished master' thesis, Ewha Womans University, Seoul.
  19. Lindfred, H., Saalman, R., Nilsson, S., Sparud-Lundin, C., & Lepp, M. (2012). Self-reported health, self-management, and the impact of living with inflammatory bowel disease during adolescence. Journal of Pediatric Nursing, 27(3), 256-264. http://dx.doi.org/10.1016/j.pedn.2011.02.005
  20. Lynch, T., & Spence, D. (2008). A qualitative study of youth living with Crohn disease. Gastroenterology Nursing, 31(3), 224-230; quiz 231-222. http://dx.doi.org/10.1097/01.sga.0000324114.01651.65
  21. Mittermaier, C., Dejaco, C., Waldhoer, T., Oefferlbauer-Ernst, A., Miehsler, W., Beier, M., et al. (2004). Impact of depressive mood on relapse in patients with inflammatory bowel disease: A prospective 18-month follow- up study. Psychosomatic Medicine, 66(1), 79-84. https://doi.org/10.1097/01.PSY.0000106907.24881.F2
  22. Mnif, L., Mzid, A., Amouri, A., Chtourou, L., & Tahri, N. (2010). Healthrelated quality of life in patients with inflammatory bowel disease: A Tunisian study. Tunisie Medicale, 88(12), 933-936.
  23. Park, J. B., Yang, S. K., Myung, S. J., Byeon, J. S., Lee, Y. J., Lee, G. H., et al. (2004). Clinical characteristics at diagnosis and course of Korean patients with Crohn's disease. The Korean Journal of Gastroenterology, 43(1), 8-17.
  24. Pieper, C., Haag, S., Gesenhues, S., Holtmann, G., Gerken, G., & Jockel, K. H. (2009). Guideline adherence and patient satisfaction in the treatment of inflammatory bowel disorders: An evaluation study. BMC Health Services Research, 9, 17. http://dx.doi.org/10.1186/1472-6963-9-17
  25. Pihl-Lesnovska, K., Hjortswang, H., Ek, A. C., & Frisman, G. H. (2010). Patients' perspective of factors influencing quality of life while living with Crohn disease. Gastroenterology Nursing, 33(1), 37-44; quiz 45-36. http://dx.doi.org/10.1097/SGA.0b013e3181cd49d0
  26. Politi, P., Bodini, P., Mortilla, M. G., Beltrami, M., Fornaciari, G., Formisano, D., et al. (2008). Communication of information to patients with inflammatory bowel disease: A european collaborative study in a multinational prospective inception cohort. Journal of Crohn's & Colitis, 2(3), 226-232. http://dx.doi.org/10.1016/j.crohns.2008.01.007
  27. Strauss, A., & Corbin, J. M. (1998). Basics of qualitative research: Techniques and procedures for developing grounded theory (2nd ed.). Thousand Oaks, CA: SAGE Publications.
  28. Vidal, A., Gomez-Gil, E., Sans, M., Portella, M. J., Salamero, M., Pique, J. M., et al. (2008). Health-related quality of life in inflammatory bowel disease patients: The role of psychopathology and personality. Inflammatory Bowel Diseases, 14(7), 977-983. http://dx.doi.org/10.1002/ibd.20388
  29. Yang, S. K., Yun, S., Kim, J. H., Park, J. Y., Kim, H. Y., Kim, Y. H., et al. (2008). Epidemiology of inflammatory bowel disease in the Songpa-Kangdong district, Seoul, Korea, 1986-2005: A KASID study. Inflammatory Bowel Diseases, 14(4), 542-549. http://dx.doi.org/10.1002/ibd.20310
  30. Ye, B. D., Yang, S. K., Cho, Y. K., Park, S. H., Yang, D. H., Yoon, S. M., et al. (2010). Clinical features and long-term prognosis of Crohn's disease in Korea. Scandinavian Journal of Gastroenterology, 45(10), 1178-1185. http://dx.doi.org/10.3109/00365521.2010.497936