The authors declare that they have no competing interests.
JBM contributed to study design, data collection, data analysis, and drafting of the manuscript. RRH contributed to data analysis and drafting of the manuscript. RMF conceived of the study and participated in its design, coordination, and data analysis. GG contributed to study design and coordination, data collection, data analysis, and critical revision of the manuscript. KMJ contributed to data collection, data analysis, and revision of the manuscript. EVL contributed to study design and provided critical revisions to the manuscript. MBM contributed to study design and coordination, data collection, data analysis, and critical revisions of the manuscript. JCT contributed to study design and coordination, data collection, data analysis, and critical revision of the manuscript. RRS conceived of the study and participated in its design and coordination, data analysis, and critical revisions of the manuscript. All authors read and approved the final manuscript.
Irritable bowel syndrome (IBS) and inflammatory bowel disease (IBD) are chronic conditions affecting millions of individuals in the United States. The symptoms are well-documented and can be debilitating. How these chronic gastrointestinal (GI) conditions impact the daily lives of those afflicted is not well documented, especially from a patient's perspective.
Here we describe data from a series of 22 focus groups held at three different academic medical centers with individuals suffering from chronic GI conditions. All focus groups were audio recorded and transcribed. Two research team members independently analyzed transcripts from each focus group following an agreed upon coding scheme.
One-hundred-thirty-six individuals participated in our study, all with a chronic GI related condition. They candidly discussed three broad themes that characterize their daily lives: identification of disease and personal identity, medications and therapeutics, and daily adaptations. These all tie to our participants trying to deal with symptoms on a daily basis. We find that a recurrent topic underlying these themes is the dichotomy of experiencing uncertainty and striving for control.
Study participants' open dialogue and exchange of experiences living with a chronic GI condition provide insight into how these conditions shape day-to-day activities. Our findings provide fertile ground for discussions about how clinicians might best facilitate, acknowledge, and elicit patients' stories in routine care to better address their experience of illness.