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Challenges of living with and managing inflammatory bowel disease: A meta‐synthesis of patients’ experiences

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  • Clodagh Byron
  • Nicola Cornally
  • Aileen Burton
  • Eileen Savage

Abstract

Aims and objectives To examine qualitative studies which reported on patients’ challenges of living with and managing inflammatory bowel disease (IBD). Background There is a growing body of qualitative research focusing on the subjective experiences of patients with IBD. This research points to the daily challenges that patients experience which can relate to their physical and psychological health, as well as their social well‐being, and may impact negatively on their lives. To date, there has been little attempt to synthesise these studies, and little is known about how patients manage the challenges they experience. Design A meta‐synthesis was conducted, based on guidelines developed by Sandelowski and Barroso (Handbook for synthesizing qualitative research, Springer, New York, NY, 2007) and PRISMA (Int J Surg, 8, 2009, 336). Methods Searches were conducted within the CINAHL, MEDLINE, PsycINFO, Psychology and Behavioural Sciences Collection and SocINDEX databases to locate qualitative and mixed methodology studies. The retrieved articles were screened against predetermined inclusion criteria. Quality appraisal was assessed using the Joanna Briggs Institute critical appraisal tool for qualitative research (Int J Evid Based Healthc, 13, 2015, 179). Results Thematic analysis resulted in three themes: the unpredictability of living with IBD, the emotional turmoil of living with IBD and striving to maintain a normal life in managing IBD. Conclusion The greatest challenges for patients identified in this meta‐synthesis were the physical symptoms associated with IBD. These impacted negatively on their psychological and social well‐being and reduced their quality of life. There is a notable gap in research on patient experiences of managing the challenges identified in everyday life and to what extent they receive support from healthcare professionals. Relevance to clinical practice The results of this meta‐synthesis offer insights into how the physical challenges of living with IBD, particularly in relation to symptoms, impact adversely on patients’ psychological and social well‐being. These insights are clinically relevant to healthcare professionals as a basis for supporting patients to manage their challenges.

Suggested Citation

  • Clodagh Byron & Nicola Cornally & Aileen Burton & Eileen Savage, 2020. "Challenges of living with and managing inflammatory bowel disease: A meta‐synthesis of patients’ experiences," Journal of Clinical Nursing, John Wiley & Sons, vol. 29(3-4), pages 305-319, February.
    • Handle: RePEc:wly:jocnur:v:29:y:2020:i:3-4:p:305-319
    DOI: 10.1111/jocn.15080
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    References listed on IDEAS

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    1. Dorothy N Sykes & Paula C Fletcher & Margaret A Schneider, 2015. "Balancing my disease: women's perspectives of living with inflammatory bowel disease," Journal of Clinical Nursing, John Wiley & Sons, vol. 24(15-16), pages 2133-2142, August.
    2. Shubin, Sergei & Rapport, Frances & Seagrove, Anne, 2015. "Complex and dynamic times of being chronically ill: Beyond disease trajectories of patients with ulcerative colitis," Social Science & Medicine, Elsevier, vol. 147(C), pages 105-112.
    3. Jacqueline Sammut & Josianne Scerri & Rita Borg Xuereb, 2015. "The lived experience of adults with ulcerative colitis," Journal of Clinical Nursing, John Wiley & Sons, vol. 24(17-18), pages 2659-2667, September.
    4. Kjerstin Larsson & Lars Lööf & Karin Nordin, 2017. "Stress, coping and support needs of patients with ulcerative colitis or Crohn's disease: a qualitative descriptive study," Journal of Clinical Nursing, John Wiley & Sons, vol. 26(5-6), pages 648-657, March.
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    6. Meenakshi Bewtra & F. Johnson, 2013. "Assessing Patient Preferences for Treatment Options and Process of Care in Inflammatory Bowel Disease: A Critical Review of Quantitative Data," The Patient: Patient-Centered Outcomes Research, Springer;International Academy of Health Preference Research, vol. 6(4), pages 241-255, December.
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