medigraphic.com
Instituto Nacional de Salud Pública

2016, Number 1

<< Back Next >>

salud publica mex 2016; 58 (1)

Crohn’s disease: The experience of living with a chronic illness

García-Sanjuán S, Lillo-Crespo M, Sanjuán-Quiles Á, Richart-Martínez M

Language: Spanish
References: 41
Page: 49-55
PDF size: 238.68 Kb.


ABSTRACT

Objective. To explore the experiences of people with Crohn disease (CD), their life-changing events, the impact on their lives and the strategies used to cope with it. Materials and Methods. Qualitative study. In-depth interviews were carried out on 10 people affected by the disease in the province of Alicante (Spain). The collection, processing and analysis of data was performed using some phenomenological elements. Results. The experiences of those affected can be classified into four main areas: recognition of the illness; perceived consequences of the disease itself by CD affected patients; disease management, and the search for support. Conclusions. Knowledge of the life experience of people affected by CD appears to be essential for the effective management of chronic illnesses when planning specific health treatment programs.


REFERENCES

  1. Heap GA, Van Heel DA. The genetics of chronic inflammatory diseases. Hum Mol Genet 2009;18(R1):R101.

  2. Sainsbury A, Heatley RV. Psychosocial factors in the quality of life of patients with inflammatory bowel disease. Aliment Pharmacol Ther 2005;21(5):499-508.

  3. Bernstein CN, Fried M, Krabshuis J, Cohen H, Eliakim R, Fedail S, et al. World Gastroenterology Organization Practice Guidelines for the diagnosis and management of IBD in 2010. Inflamm Bowel Dis 2010;16(1):112- 124.

  4. Bosques-Padilla FJ, Sandoval-Garcia ER, Martinez-Vazquez MA, Garza- Gonzalez E, Maldonado-Garza HJ. Epidemiology and clinical characteristics of ulcerative colitis in north-eastern Mexico. Rev Gastroenterol Mex 2011; 76(1):34-38.

  5. Córdova-Villalobos JÁ, Barriguete-Meléndez JA, Lara-Esqueda A, Barquera S, Rosas-Peralta M, Hernández-Ávila M, et al. Las enfermedades crónicas no transmisibles en México: sinopsis epidemiológica y prevención integral. Salud Publica Mex 2008;50(5):419-427.

  6. Taylor SJ, Bogdan R. Introducción a los métodos cualitativos de investigación. 1987.

  7. Giorgi A. Concerning the application of phenomenology to caring research. Scand J Caring Sci 2000;14(1):11-15.

  8. Patton MQ. Qualitative evaluation and research methods: SAGE Publications, inc; 1990.

  9. Harvey R, Bradshaw J. A simple index of Crohn’s-disease activity. J Lancet 1980;315(8167):514.

  10. Braun V, Clarke V. Using thematic analysis in psychology. Qual Res Psychol 2006;3(2):77-101.

  11. Allison M, Lindsay J, Gould D, Kelly D. Surgery in young adults with inflammatory bowel disease: A narrative account. Int J Nurs Stud 2013;50(11):1566-1575.

  12. Lynch T, Spence D. A qualitative study of youth living with crohn disease. Gastroenterol Nurs 2008;31(3):224-230.

  13. Charmaz K. Loss of self: a fundamental form of suffering in the chorinically ill. 1983;5(2):168-195.

  14. Bury M. Chronic illness as biographical disruption. Sociol Health Illn 1982;4(2):167-182.

  15. Garcia-Sanjuan S, Lillo-Crespo M, Sanjuan-Quiles A, Gil-Gonzalez D, Richart-Martinez M. Life Experiences of People Affected by Crohn’s Disease and Their Support Networks: Scoping Review. Clin Nurs Res 2014 Jul 23.

  16. Lesnovska KP, Börjeson S, Hjortswang H, Frisman GH. What do patients need to know? Living with inflammatory bowel disease. J Clin Nurs 2013.

  17. Conrad S, Hüppe A, Raspe H. Preference of patients with inflammatory bowel disease regarding information and shared decision-making: Results from a cross-sectional survey in germany. Z Gastroenterol 2012;50(4):364-372.

  18. Husain A, Triadafilopoulos G. Communicating with patients with inflammatory bowel disease. Inflamm Bowel Dis 2004;10(4):444-450.

  19. Dibley L, Norton C. Experiences of fecal incontinence in people with inflammatory bowel disease: Self-reported experiences among a community sample. Inflamm Bowel Dis 2013;19(7):1450-1462.

  20. Taft TH, Keefer L, Leonhard C, Nealon-Woods M. Impact of perceived stigma on inflammatory bowel disease patient outcomes. Inflamm Bowel Dis 2009;15(8):1224-1232.

  21. 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.

  22. Casati J, Toner BB, De Rooy EC, Drossman DA, Maunder RG. Concerns of patients with inflammatory bowel disease: A review of emerging themes. Dig Dis Sci 2000;45(1):26-31.

  23. Kemp K, Griffiths G, Lovell K. Understanding the health and social care needs of people: living with IBD: A meta-synthesis of the evidence. World J Gastroenterol 2012;18(43):6240-6249.

  24. Hall NJ, Rubin GP, Dougall A, Hungin A, Neely J. The fight for ‘healthrelated normality’: a qualitative study of the experiences of individuals living with established inflammatory bowel disease (IBD). J Health Psychol 2005;10(3):443-455.

  25. Krause M. The transformation of social representations of chronic disease in a self-help group. J Health Psychol 2003;8(5):599-615.

  26. 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.

  27. Adler J, Raju S, Beveridge AS, Wang S, Zhu J, Zimmermann EM. College adjustment in University of Michigan students with Crohn’s and colitis. Inflamm Bowel Dis 2008;14(9):1281-1286.

  28. Schneider MA, Fletcher PC. ‘I feel as if my IBS is keeping me hostage!’ Exploring the negative impact of irritable bowel syndrome (IBS) and inflammatory bowel disease (IBD) upon university-aged women. Int J Nurs Pract 2008;14(2):135-148.

  29. Wolfe BJ, Sirois FM. Beyond standard quality of life measures: the subjective experiences of living with inflammatory bowel disease. Qual Life Res 2008;17(6):877-886.

  30. Yoo Y, Lee E, Cho O. Life experience of patients suffering from Crohn’s disease. J Korean Acad Nurs 2013;43(3):409-419.

  31. Bernklev T, Jahnsen J, Henriksen M, Lygren I, Aadland E, Sauar J, et al. Relationship between sick leave, unemployment, disability, and healthrelated quality of life in patients with inflammatory bowel disease. Inflamm Bowel Dis 2006;12(5):402-412.

  32. Moradkhani A, Beckman LJ, Tabibian JH. Health-related quality of life in inflammatory bowel disease: Psychosocial, clinical, socioeconomic, and demographic predictors. J Crohns Colitis 2013;7(6):467-473.

  33. Haller C, Kemmler G, Judmair G, Rathner G, Kinzl H, Richter R, et al. Social network and social support in patients with chronic inflammatory bowel disease. Z Psychosom Med Psychother 2003;49(1):36-48.

  34. Maunder RG, Nolan RP, Hunter JJ, Lancee WJ, Steinhart AH, Greenberg GR. Relationship between social support and autonomic function during a stress protocol in ulcerative colitis patients in remission. Inflamm Bowel Dis 2012;18(4):737-742.

  35. Oliveira S, Zaltman C, Elia C, Vargens R, Leal A, Barros R, et al. Qualityof- life measurement in patients with inflammatory bowel disease receiving social support. Inflamm Bowel Dis 2007;13(4):470-474.

  36. Altschuler A, Collins B, Lewis JD, Velayos F, Allison JE, Hutfless S, et al. Gastroenterologists’ attitudes and self-reported practices regarding inflammatory bowel disease. Inflamm Bowel Dis 2008;14(7):992-999.

  37. Cámara RJA, Lukas PS, Begré S, Pittet V, von Känel R. Effects of social support on the clinical course of Crohn’s disease. Inflamm Bowel Dis 2011;17(6):1277-1286.

  38. Farrell D, Savage E. Symptom burden: A forgotten area of measurement in inflammatory bowel disease. Int J Nurs Pract 2012;18(5):497-500.

  39. Håkanson C, Sahlberg-Blom E, Ternestedt BM. Being in the patient position: Experiences of health care among people with irritable bowel syndrome. Qual Health Res 2010;20(8):1116-1127.

  40. Hãivik ML, Bernklev T, Solberg IC, Cvancarova M, Lygren I, Jahnsen J, et al. Patients with Crohn’s disease experience reduced general health and vitality in the chronic stage: Ten-year results from the IBSEN study. J Crohns Colitis 2012; 6(4):441-453.

  41. Keefer L, Doerfler B, Artz C. Optimizing management of Crohn’s disease within a project management framework: Results of a pilot study. Inflamm Bowel Dis 2012;18(2):254-260.




2020     |     www.medigraphic.com