Challenges of living with and managing inflammatory bowel disease: A meta-synthesis of patients' experiences

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.

Keywords: Crohn’s disease; colitis; inflammatory bowel diseases; meta-synthesis; patient experiences; qualitative research; ulcerative.