Understanding the health and social care needs of people living with IBD: a meta-synthesis of the evidence.

Abstract

To undertake a metasynthesis of qualitative studies to understand the health and social needs of people living with inflammatory bowel disease (IBD). A systematic search strategy identified qualitative studies exploring the phenomenon of living with inflammatory bowel disease. Databases included MEDLINE, PsychInfo, EMBASE, CINAHL and the British Nursing Index via the OVID platform. Qualitative search filters were adapted from Hedges database (http://www.urmc.rochester.edu/hslt/miner/digital_library/tip_sheets/Cinahl_eb_filters.pdf). Qualitative empirical studies exploring the health and social needs of people living with inflammatory bowel disease were selected. Study eligibility and data extraction were independently completed using the Critical Appraisal Skills Programme for qualitative studies. The studies were analysed and synthesised using metasynthesis methodology. The themes from the studies allowed for common translations into a new interpretation of the impact of living with inflammatory bowel disease. Of 1395 studies, six published studies and one unpublished thesis fulfilled the inclusion criteria. First iteration of synthesis identified 16 themes, 2nd iteration synthesised these into three main 2nd order constructs: "detained by the disease"; "living in a world of disease" and "wrestling with life". "Detained by the disease" is the fear of incontinence, the behaviour the patients display due to the fear, and the impact this has on the individual, such as social isolation and missing out on life events. All of these serve to "pull" the patient back from normal living. "Living in a world of disease" is the long term effects of living with a long term condition and the fear of these effects. "Wrestling with life" is the continued fight to thrive, the "push" to continue normal living. The metasynthesis provides a comprehensive representation of living with IBD. The unmistakeable burden of incontinence is exposed and its ongoing effects are demonstrated. The combined overall impact of living with IBD is the tension these patients live with: "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. The impact of the fear of incontinence and behaviour of the individual as a result, requires further qualitative enquiry.