Experiences of patients living with inflammatory bowel disease in rural communities
Inflammatory bowel disease (IBD) is a chronic disease that often has fluctuating and painful symptoms. IBD patients must cope with a lifelong illness with relapses, remissions, and varied treatments that can affect their overall quality of life. Patients living in a rural setting are faced with further challenges such as access to healthcare, physician availability, and socioeconomic factors. For the current study, we interviewed adult patients in a clinic who were diagnosed with IBD for at least 3 years to better understand their experiences with the aim to inform intervention and educations for patients and physicians. Through a thematic analysis, we argue that five themes emerged from the data: i) IBD etiology, ii) ceding self-care, iii) environmental factors associated with disclosure, iv) stigma, and v) environmental obstacles to care. We suggest opportunities for research and collaboration among researchers and practitioners to help reduce stigma associated with IBD and promote health among rural communities.
American Gastroenterological Association. What is inflammatory bowel disease? Available from: http://www.gastro.org/info_for_patients/ibd-101-what-is-inflammatory-bowel-disease. Accessed: September 2018.
Crohn’s & Colitis Foundation. Fact sheet – About IBD. Available from: http://www.crohnscolitisfoundation.org/news/for-the-media/media-kit/fact-sheet-about-ibd.html. Accessed: September 2018.
Ng SC, Shi HY, Underwood FE, et al. Worldwide incidence and prevalence of inflammatory bowel disease in the 21st century: A systematic review of population-based studies. J Lancet 2018;23:2769-78.
Smith JD, Margolis SA, Ayton J, et al. Defining remote medical practice: A consensus viewpoint of medical practitioners working and teaching in remote practice. Med J Aust 2008;188:159-61. DOI: https://doi.org/10.5694/j.1326-5377.2008.tb01561.x
Björkman I, Simren M, Ringström G, Ung EJ. Patients’ experiences of health care encounters in severe irritable bowel syndrome: An analysis based on narrative and feminist theory. J Clin Nurs 2016;25:2967-78. DOI: https://doi.org/10.1111/jocn.13400
Kennedy A, Robinson A, Rogers A. Incorporating patients’ views and experiences of life with IBS in the development of an evidence based self-help guidebook. Patient Edu Couns 2003;50:303-10. DOI: https://doi.org/10.1016/S0738-3991(03)00054-5
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;20:1116-27. DOI: https://doi.org/10.1177/1049732310369914
Britt RK. Online social support for participants of Crohn’s and ulcerative colitis groups. Health Commun 2017;32:1529-38. DOI: https://doi.org/10.1080/10410236.2016.1234539
McCormick JB, Hammer RR, Farrell RM, et al. Experiences of patients with chronic gastrointestinal conditions: In their own words. Health Qual Life Outcomes 2012;10:1-11. DOI: https://doi.org/10.1186/1477-7525-10-25
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;22:278-85. DOI: https://doi.org/10.1097/01.NUR.0000325382.99717.ac
Cámara RJ, Lukas PS, Begré S, et al. Effects of social support on the clinical course of Crohn’s disease. Inflamm Bowel Dis 2010;17:1277-86. DOI: https://doi.org/10.1002/ibd.21481
Kleiber DA, Brock SC, Lee Y, et al. The relevance of leisure in an illness experience: Realities of spinal cord injury. J Leis Res 1995;27:283-99. DOI: https://doi.org/10.1080/00222216.1995.11949749
Braun V, Clarke V. Using thematic analysis in psychology. Qual Res Psychol 1006;3:77-101. DOI: https://doi.org/10.1191/1478088706qp063oa
Goffman E. Stigma. Englewood Cliffs, NJ: Prentice Hall; 1963.
Roth J. Timetables. New York: Bobbs-Merrill; 1963.
Brittain KR, Shaw C. The social consequences of living with and dealing with incontinence - A careers perspective. Soc Sci Med 2007;65:1274-83. DOI: https://doi.org/10.1016/j.socscimed.2007.04.002
Betteridge JD, Armbruster SP, Maydonovitch C, Veerappan GR. Inflammatory bowel disease prevalence by age, gender, and geographic location in the U.S. military health care population. Inflamm Bowel Dis 2013;19:1421-7. DOI: https://doi.org/10.1097/MIB.0b013e318281334d
Crohn’s & Colitis Foundation of America. IBD: The basics. Available from:
http://www.crohnscolitisfoundation.org/what-are-crohns-and-colitis/. Accessed: October 2018.
Centers for Disease Control and Prevention. Epidemiology of the IBD. Available from: https://www.cdc.gov/ibd/ibd-epidemiology.htm. Accessed: October 2018.
Kingod N, Cleal B, Wahlberg A, Husted GR. Online peer-to-peer communities in the daily lives of people with chronic illness. Qual Health Res 2016;27:89-99. DOI: https://doi.org/10.1177/1049732316680203
Jones J, Curtin M. Traumatic brain injury, participation, and rural identity. Qual Health Res 2010;20:942-51. DOI: https://doi.org/10.1177/1049732310365501
Triantafillidis JK, Merikas E, Georgopoulos F. Current and emerging drugs for the treatment of inflammatory bowel disease. Drug Des Devel Ther 2011;5:185-210. DOI: https://doi.org/10.2147/DDDT.S11290
Dibley L, Coggrave M, McClurg D, et al. “It’s just horrible”: a qualitative study of patients’ and carers’ experiences of bowel dysfunction in multiple sclerosis. J Neurol 2017;264:1354-61. DOI: https://doi.org/10.1007/s00415-017-8527-7
Dixon-Woods M, Critchley S. Medical and lay views of irritable bowel syndrome. Fam Pract 2000;17:108-13. DOI: https://doi.org/10.1093/fampra/17.2.108
Håkanson C, Sahlberg-Blom E, Nyhlin H, Ternestedt BM. Struggling with an unfamiliar and unreliable body: The experience of irritable bowel syndrome. J Nurs & Health Care Chron Ill 2009;1:29-38. DOI: https://doi.org/10.1111/j.1365-2702.2008.01001.x
Dibley L, Norton C, Whitehead E. The experience of stigma in inflammatory bowel disease: An interpretive (hermeneutic) phenomenological study. J Adv Nurs 2018;74:838-51. DOI: https://doi.org/10.1111/jan.13492
Rich M, Lamola S, Gordon J, Chalfen R. Video intervention/prevention assessment: A patient-centered methodology for understanding the adolescent illness experience. J Adol Health 2000;27:155-65. DOI: https://doi.org/10.1016/S1054-139X(00)00114-2
Husain A, Triadafilopolous G. Communicating with patients with inflammatory bowel disease. Inflamm Bowel Dis 2004;10:444-50. DOI: https://doi.org/10.1097/00054725-200407000-00020
Altschuler A, Collins B, Lewis JD, et al. Gastroenterologists’ attitudes and self-reported practices regarding inflammatory bowel disease. Inflamm Bowel Dis 2008;14:992-99. DOI: https://doi.org/10.1002/ibd.20416
Taft TH, Keefer L, Leonhard C, Nealon-Woods M. Impact of perceived stigma on inflammatory bowel disease patient outcomes. Inflamm Bowel Dis 2009;15:1224-32. DOI: https://doi.org/10.1002/ibd.20864
Musaev A, Britt RK, Hayes J, et al. Study of Twitter communications on cardiovascular disease by state health departments. ICWS 2019;1-9. DOI: https://doi.org/10.1007/978-3-030-23499-7_12
National Institutes of Health. Self-management report. Available from: https://report.nih.gov/NIHfactsheets/ViewFactSheet.aspx?csid=70
- Abstract views: 897
- PDF: 303
Copyright (c) 2019 Rebecca K. Britt, Andrew Englebert
This work is licensed under a Creative Commons Attribution-NonCommercial 4.0 International License.