*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.
Inflamm Bowel Dis. 2017 Aug;23(8):1247-1256. doi: 10.1097/MIB.0000000000001141.
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.
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.
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.
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.
炎症性肠病（IBD）患者需要疾病和生活方式信息，以便在日常生活中做出与健康相关的决策。本研究源自一项对 IBD 患者生活经历的更大规模定性研究，旨在探讨 IBD 患者如何在日常生活中获取与健康相关的信息。
参与者主要从曼尼托巴 IBD 队列研究中招募。我们采用目的性抽样选择具有广泛特征和经验的参与者。对个人访谈进行录音并逐字转录。使用与现象学方法一致的归纳定性方法分析数据。
共有 45 名 IBD 患者参与，其中 51%为女性。研究结果突出了时间和环境对获取与健康相关信息的影响。时间影响被描述为随着时间的推移对健康相关信息的需求不断变化。参与者确定了影响获取信息以做出健康决策的 6 个环境因素：（1）情绪和态度反应；（2）感知到的益处和风险；（3）对信息来源的信任；（4）获取和使用信息的知识和技能；（5）支持决策的证据的可用性；（6）社会和经济环境。
研究结果说明了 IBD 过程中对健康相关信息的需求不断变化，以及健康和生活环境的不断变化。从业者可以通过在适当的时间以多种格式提供高质量的信息，并支持将信息融入日常生活，从而满足 IBD 患者的信息需求。
