Coping with Inflammatory Bowel Disease: Engaging With Information to Inform Health- Related Decision-Making in Daily Life

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Date
2017-05
Authors
Restall, Gayle
Simms, Alexandria
Walker, John
Haviva, Clove
Graff, Lesley
Sexton, Kathryn
Miller, Norine
Targownik, Laura
Bernstein, Charles
Journal Title
Journal ISSN
Volume Title
Publisher
Inflammatory Bowel Diseases
Abstract
Abstract BACKGROUND: People with inflammatory bowel disease (IBD) require disease and lifestyle information to make health-related decisions in their daily lives. Derived from a larger qualitative study of the lived experiences of people with IBD, we report on findings that explored how people with IBD engage with health-related information in their daily lives. METHODS: Participants were recruited primarily from the Manitoba IBD Cohort Study. We used purposive sampling to select people with a breadth of characteristics and experiences. Individual interviews were audio-recorded and transcribed verbatim. Data were analyzed using inductive qualitative methods consistent with a phenomenological approach. RESULTS: Forty-five people with IBD participated; 51% were women. Findings highlighted the temporal and contextual influences on engagement with health-related information. Temporal influences were described as the changing need for health-related information over time. Participants identified 6 contextual factors influencing engagement with information to make health decisions: (1) emotional and attitudinal responses, (2) perceived benefits and risks, (3) trust in the source of the information, (4) knowledge and skills to access and use information, (5) availability of evidence to support decisions, and (6) social and economic environments. CONCLUSIONS: Findings illustrate the changing needs for health-related information over the course of IBD, and with evolving health and life circumstances. Practitioners can be responsive to information needs of people with IBD by having high-quality information available at the right time in a variety of formats and by supporting the incorporation of information in daily life.
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Keywords
Crohns Disease, Colitis, Informative Study
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