Introduction The Inflammatory Bowel Disease Questionnaire and the Rating Form for IBD patient's Concerns, are widely used measures in IBD but fail to capture the essence of living with IBD from the patient's perspective. To deliver patient centred care it is imperative that we have an understanding of the experience of living with IBD. This study aimed to synthesise the findings of qualitative papers that explored the health and social needs of patients living with IBD.
Methods A systematic literature search was conducted in MEDLINE, PsychInfo, EMBASE, CINAHL, British Nursing Index via the OVID platform to August 2010. Search filters developed by the Hedges database, McMaster University Health Information Research Unit and Kathryn Nesbit, Edward G Milner Library, University of Rochester, were adapted to aid the search. 1395 papers were generated by the preliminary search. Qualitative studies which explored the phenomena of living with IBD, English language and sample population adults >16 years were included. Study eligibility judgements and data extraction were independently completed by the authors. The papers were quality appraised using the Critical Appraisal Skills Programme. Synthesis was achieved by comparing the themes and findings of each study with one another to identify 1st order constructs. Repeated comparison between the papers revealed the similarities and differences, which led to 2nd order constructs and the new interpretation of the synthesised studies.
Results Six papers and one unpublished thesis were included, all from Western countries, one study included patients from an immigrant background. Combined sample of the studies was only 86 patients to describe the phenomena of living with IBD. First iteration of synthesis identified 16 themes, 2nd iteration synthesised these into three main constructs: “detained by the disease”; “living in a world of disease”; “wrestling with life”. “Detained by the disease” is the fear of incontinence, and the behaviour the patients displays as a result of this. Social isolation and missing out on life events all serve to “pull” the patient back from normal living. “Living in a world of disease” is living with the fear of a long term condition.“ Wrestling with life” is the “push” to continue normal living.
Conclusion People with IBD endure many daily challenges, stress, pain, fighting for control. The combined impact of living with IBD is the tension they live with. The value of metasynthesis is the interpretation of all of the synthesised studies to provide a global representation of living with IBD: “Pushed and pulled: a compromised life”, people living with IBD experience a constant conflict throughout their lives, they push to be normal but IBD pulls them back.
Competing interests None declared.
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