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.
Subject(s)
Adaptation, Psychological , Decision Making , Health Information Management , Inflammatory Bowel Diseases/psychology , Information Technology/statistics & numerical data , Quality of Life , Adult , Aged , Case-Control Studies , Female , Follow-Up Studies , Humans , Male , Manitoba , Medical Informatics , Middle Aged , Qualitative Research , Social Support , Young AdultABSTRACT
BACKGROUND: People with inflammatory bowel disease (IBD) are at increased risk for unemployment and work absenteeism over the course of their adult lives. However, little is known about the firsthand experiences of people living with the disease regarding perceived barriers, facilitators, and strategies for navigating work roles. METHODS: In this qualitative study, participants were purposefully recruited from 2 existing IBD cohort study samples. Recruitment strategies aimed for diversity in age, sex, and disease type, duration, and symptom activity. In-depth interviews sought perspectives of living with IBD. Data were analyzed using inductive qualitative methods. RESULTS: Forty-five people currently or previously in the workforce participated; 51% were female. The mean age was 45.4 years (SD = 16.1; range = 21-73 years). Mean IBD duration was 10.9 years (SD = 6.3). Participants had a broad range of experiences in adapting to work roles. IBD symptoms and treatments interacted with other personal and environmental factors to shape the experiences of work. Experiences were shaped by: (1) personal health and well-being, (2) personal values, beliefs, and knowledge, (3) job characteristics, (4) workplace physical environment, (5) workplace culture, and (6) financial factors. Participants identified personal strategies and environmental supports that assisted them to navigate their work roles. CONCLUSIONS: The perspectives of people with IBD provided in-depth understanding of contextual factors that influence work roles. They identified personal strategies to manage health and choices about work, environmental supports that promote timely workplace accommodations, and appropriate social insurance benefits as facilitators of work retention for people with IBD.
