Experiences of patients with chronic gastrointestinal conditions: In their own words

Jennifer B. McCormick, Rachel R. Hammer, Ruth M. Farrell, Gail Geller, Katherine M. James, Edward V. Loftus, Mary B. Mercer, Jon C. Tilburt, Richard R. Sharp

Research output: Contribution to journalArticle

24 Citations (Scopus)

Abstract

Background: 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.Methods: 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.Results: 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.Conclusions: 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.

Original languageEnglish (US)
Article number25
JournalHealth and Quality of Life Outcomes
Volume10
DOIs
StatePublished - Mar 8 2012

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Focus Groups
Irritable Bowel Syndrome
Inflammatory Bowel Diseases
Uncertainty
Research
Therapeutics

All Science Journal Classification (ASJC) codes

  • Public Health, Environmental and Occupational Health

Cite this

McCormick, Jennifer B. ; Hammer, Rachel R. ; Farrell, Ruth M. ; Geller, Gail ; James, Katherine M. ; Loftus, Edward V. ; Mercer, Mary B. ; Tilburt, Jon C. ; Sharp, Richard R. / Experiences of patients with chronic gastrointestinal conditions : In their own words. In: Health and Quality of Life Outcomes. 2012 ; Vol. 10.
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abstract = "Background: 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.Methods: 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.Results: 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.Conclusions: 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.",
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McCormick, JB, Hammer, RR, Farrell, RM, Geller, G, James, KM, Loftus, EV, Mercer, MB, Tilburt, JC & Sharp, RR 2012, 'Experiences of patients with chronic gastrointestinal conditions: In their own words', Health and Quality of Life Outcomes, vol. 10, 25. https://doi.org/10.1186/1477-7525-10-25

Experiences of patients with chronic gastrointestinal conditions : In their own words. / McCormick, Jennifer B.; Hammer, Rachel R.; Farrell, Ruth M.; Geller, Gail; James, Katherine M.; Loftus, Edward V.; Mercer, Mary B.; Tilburt, Jon C.; Sharp, Richard R.

In: Health and Quality of Life Outcomes, Vol. 10, 25, 08.03.2012.

Research output: Contribution to journalArticle

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AU - Sharp, Richard R.

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