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

Restall, Gayle J. OT Reg (MB), PhD*,†; Simms, Alexandria M. OT Reg (MB)*,†; Walker, John R. PhD*,‡; Haviva, Clove MA*,§; Graff, Lesley A. PhD*,‡; Sexton, Kathryn A. PhD*,‡; Miller, Norine RN, BN*,||; Targownik, Laura E. MD, MSHS*,||; Bernstein, Charles N. MD*,||

doi: 10.1097/MIB.0000000000001141
IBD LIVE Articles

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.

Article first Published online 11 May 2017.

*University of Manitoba IBD Clinical and Research Centre, University of Manitoba, Winnipeg, Manitoba, Canada;

Department of Occupational Therapy, College of Rehabilitation Sciences, Rady Faculty of Health Sciences, University of Manitoba, Winnipeg, Manitoba, Canada;

Clinical Health Psychology, Max Rady College of Medicine, Rady Faculty of Health Sciences, University of Manitoba, Winnipeg, Manitoba, Canada;

§Psychology, Faculty of Arts, University of Manitoba, Winnipeg, Manitoba, Canada; and

||Internal Medicine, Max Rady College of Medicine, Rady Faculty of Health Sciences, University of Manitoba, Winnipeg, Manitoba, Canada.

Address correspondence to: Gayle J. Restall, OT Reg (MB), PhD, Department of Occupational Therapy, College of Rehabilitation Sciences, University of Manitoba, R106-771 McDermot Avenue, Winnipeg, MB R3E 0T6, Canada (e-mail: Gayle.Restall@umanitoba.ca).

Supported by the Canadian Institutes of Health Research.

C. N. Bernstein is on advisory boards of Abbvie Canada, Ferring Canada, Janssen Canada, Pfizer Canada, and Shire Canada; a consultant to Mylan Pharmaceuticals; in receipt of educational grants from Abbvie Canada, Takeda Canada, Shire Canada, and Janssen Canada, and a research grant from Abbvie Canada; on speakers' bureaus for Abbvie Canada, Ferring Canada, and Shire Canada. L. E. Targownik is or has been on advisory boards of Astra Zeneca Canada, Merck Canada, Takeda Canada, Pfizer Canada, Janssen Canada, and AbbVie Canada; in receipt of research grants from Janssen Canada and Pfizer Canada; on a speakers' panel for Janssen Canada and Takeda Canada; and provides educational presentation development for the Canadian Agency for Drugs and Technologies in Health Care. K. A. Sexton is a post-doctoral fellow supported by the Canadian Institutes of Health Research at the University of Manitoba, and is employed by the Cognitive Behavior Therapy Institute of Manitoba. A. M. Simms received the Manitoba Graduate Scholarship. The other authors have no conflict of interest to disclose.

Received December 21, 2016

Accepted March 28, 2017

© Crohn's & Colitis Foundation
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