J Korean Acad Nurs.  2013 Jun;43(3):409-419. 10.4040/jkan.2013.43.3.409.

Life Experience of Patients suffering from Crohn's Disease

• Yoo YS
• Lee EJ
• Cho OH

• KMID: 1707131
• DOI: http://doi.org/10.4040/jkan.2013.43.3.409

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 The identified outcomes were 'Living a withdrawn life', 'coping flexibly', 'drifting with tangled emotions' and 'maintaining long-term remission'.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.

Keyword

Crohn's disease; Life change events; Qualitative research

MeSH Terms

Adaptation, Psychological
Adolescent
Adult
Crohn Disease/*psychology
Female
Humans
Interviews as Topic
*Life Change Events
Male
Middle Aged
Stress, Psychological
Young Adult

Figure

• 

  Figure 1 Process of 'tuning of two conflicting lives'.

Reference

1. Angelberger S, Vogelsang H, Novacek G, Miehsler W, Dejaco C, Gangl A, et al. Public awareness of Crohn's disease and ulcerative colitis: A national survey. J Crohns Colitis. 2009; 3(3):157–161. http://dx.doi.org/10.1016/j.crohns.2009.01.003.

2. Cohen D, Bin CM, Fayh AP. Assessment of quality of life of patients with inflammatory bowel disease residing in Southern Brazil. Arq Gastroenterol. 2010; 47(3):285–289.

3. Cohen RD. The quality of life in patients with Crohn's disease. Aliment Pharmacol Ther. 2002; 16(9):1603–1609.

4. Cooper JM, Collier J, James V, Hawkey CJ. Beliefs about personal control and self-management in 30-40 year olds living with inflammatory bowel disease: A qualitative study. Int J Nurs Stud. 2010; 47(12):1500–1509. http://dx.doi.org/10.1016/j.ijnurstu.2010.05.008.

5. Corbin J, Strauss A. Basics of qualitative research: Techniques and procedures for developing grounded theory. 3rd ed. Thousand Oaks, CA: SAGE Publications;2008.

6. Cosnes J, Gower-Rousseau C, Seksik P, Cortot A. Epidemiology and natural history of inflammatory bowel diseases. Gastroenterology. 2011; 140(6):1785–1794. http://dx.doi.org/10.1053/j.gastro.2011.01.055.

7. Fletcher PC, Schneider MA, Van Ravenswaay V, Leon Z. I am doing the best that I can!: Living with inflammatory bowel disease and/ or irritable bowel syndrome (part II). Clin Nurse Spec. 2008; 22(6):278–285. http://dx.doi.org/10.1097/01.NUR.0000325382.99717.ac.

8. Gibson PR, Weston AR, Shann A, Florin TH, Lawrance IC, Macrae FA, et al. Relationship between disease severity, quality of life and health-care resource use in a cross-section of Australian patients with Crohn's disease. J Gastroenterol Hepatol. 2007; 22(8):1306–1312. http://dx.doi.org/10.1111/j.1440-1746.2007.04930.x.

9. Graff LA, Walker JR, Clara I, Lix L, Miller N, Rogala L, et al. Stress coping, distress, and health perceptions in inflammatory bowel disease and community controls. Am J Gastroenterol. 2009; 104(12):2959–2969. http://dx.doi.org/10.1038/ajg.2009.529.

10. Guba EG, Lincoln YS. Effective evaluation. San Francisco, CA: Jossey-Bass Publishers;1981.

11. Hall NJ, Rubin GP, Dougall A, Hungin AP, Neely J. The fight for 'health-related normality': A qualitative study of the experiences of individuals living with established inflammatory bowel disease (ibd). J Health Psychol. 2005; 10(3):443–455. http://dx.doi.org/10.1177/1359105305051433.

12. Irvine EJ. Review article: Patients' fears and unmet needs in inflammatory bowel disease. Aliment Pharmacol Ther. 2004; 20:Suppl 4. 54–59. http://dx.doi.org/10.1111/j.1365-2036.2004.02053.x.

13. Jeon SJ, Lee KJ, Lee MH, Lim SK, Kang CJ, Kim JH. Rates of early surgery and associated risk factors in Crohn's disease. Korean J Gastroenterol. 2010; 56(4):236–241.

14. Jones MP, Wessinger S, Crowell MD. Coping strategies and interpersonal support in patients with irritable bowel syndrome and inflammatory bowel disease. Clin Gastroenterol Hepatol. 2006; 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 FJ, Alonso J. Burden of illness of Crohn's disease in Spain. Dig Liver Dis. 2003; 35(12):853–861.

16. Kim YN. A study on the quality of life of the patients with Crohn's disease. Seoul: Chung-Ang University;2010. Unpublished master' thesis.

17. Larsson K, Lööf L, Rönnblom A, Nordin K. Quality of life for patients with exacerbation in inflammatory bowel disease and how they cope with disease activity. J Psychosom Res. 2008; 64(2):139–148. http://dx.doi.org/10.1016/j.jpsychores.2007.10.007.

18. Lee SA. Stress and health-related quality of life in patients with inflammatory bowel desease. Seoul: Ewha Womans University;2010. Unpublished master' thesis.

19. Lindfred H, Saalman R, Nilsson S, Sparud-Lundin C, Lepp M. Self-reported health, self-management, and the impact of living with inflammatory bowel disease during adolescence. J Pediatr Nurs. 2012; 27(3):256–264. http://dx.doi.org/10.1016/j.pedn.2011.02.005.

20. Lynch T, Spence D. A qualitative study of youth living withCrohn disease. Gastroenterol Nurs. 2008; 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. Impact of depressive mood on relapse in patientswith inflammatory bowel disease: A prospective 18-month follow- up study. Psychosom Med. 2004; 66(1):79–84.

22. Mnif L, Mzid A, Amouri A, Chtourou L, Tahri N. Health-related quality of life in patients with inflammatory bowel disease: A Tunisian study. Tunis Med. 2010; 88(12):933–936.

23. Park JB, Yang SK, Myung SJ, Byeon JS, Lee YJ, Lee GH, et al. Clinical characteristics at diagnosis and course of Korean patients with Crohn's disease. Korean J Gastroenterol. 2004; 43(1):8–17.

24. Pieper C, Haag S, Gesenhues S, Holtmann G, Gerken G, Jöckel KH. Guideline adherence and patient satisfaction in the treatment of inflammatory bowel disorders: An evaluation study. BMC Health Serv Res. 2009; 9:17. http://dx.doi.org/10.1186/1472-6963-9-17.

25. Pihl-Lesnovska K, Hjortswang H, Ek AC, Frisman GH. Patients' perspective of factors influencing quality of life while living with Crohn disease. Gastroenterol Nurs. 2010; 33(1):37–44. quiz 45-36. http://dx.doi.org/10.1097/SGA.0b013e3181cd49d0.

26. Politi P, Bodini P, Mortilla MG, Beltrami M, Fornaciari G, Formisano D, et al. Communication of information to patients with inflammatory bowel disease: A european collaborative study in a multinational prospective inception cohort. J Crohns Colitis. 2008; 2(3):226–232. http://dx.doi.org/10.1016/j.crohns.2008.01.007.

27. Strauss A, Corbin JM. Basics of qualitative research: Techniques and procedures for developing grounded theory. 2nd ed. Thousand Oaks, CA: SAGE Publications;1998.

28. Vidal A, Gómez-Gil E, Sans M, Portella MJ, Salamero M, Piqué JM, et al. Health-related quality of life in inflammatory bowel disease patients: The role of psychopathology and personality. Inflamm Bowel Dis. 2008; 14(7):977–983. http://dx.doi.org/10.1002/ibd.20388.

29. Yang SK, Yun S, Kim JH, Park JY, Kim HY, Kim YH, et al. Epidemiology of inflammatory bowel disease in the Songpa-Kangdong district, Seoul, Korea, 1986-2005: A KASID study. Inflamm Bowel Dis. 2008; 14(4):542–549. http://dx.doi.org/10.1002/ibd.20310.

30. Ye BD, Yang SK, Cho YK, Park SH, Yang DH, Yoon SM, et al. Clinical features and long-term prognosis of Crohn's disease in Korea. Scand J Gastroenterol. 2010; 45(10):1178–1185. http://dx.doi.org/10.3109/00365521.2010.497936.