Data Analysis
The 2 facilitators met immediately after each focus group to discuss the content of the discussion and to modify probes as necessary. The facilitators and one of the physician coinvestigators (BPY) initially developed summaries of responses to the questions of interest. They then read and reread the typed transcripts and group notes, sifting through the information, highlighting key statements, and looking for patterns and connections to identify dominant themes or concerns. This is known as immersion/crystallization.17 The researchers then met to review written emerging themes. In this process, each interpreter made connections of ideas and themes through an ongoing spiral of first organizing the data alone and then by corroborating it with the other interpreters. The process of crystallization occurred after several months of deliberations. We present summaries of answers to questions of interest and participant quotations to illustrate dominant themes that emerged in the crystallization process.
Results
Fifty-one volunteers participated (43 women and 8 men; age range=16-72 years). The occupations of the participants included: student, cook, teacher, health aide, musician, self-employed, office worker, chief executive officer of a small company, retired person, and clergy. Most participants were primary care patients and described being followed up medically by their usual physician for IBS symptoms before and after diagnosis.
Symptoms. Abdominal cramping and diarrhea caused most people with IBS to seek medical care. The symptoms often triggered a fear of serious disease, especially cancer. The symptoms were perceived as severe and limiting to the daily routine. Descriptions of abdominal pain were vivid, and participants consistently affirmed that the pain was not ordinary. The diarrhea was described as urgent and explosive. The sense of urgency that accompanies bouts of diarrhea and the inability to plan the day without taking into consideration the need for proximity to a bathroom was often frustrating. Bloating and constipation also occurred but were considered less disruptive of their lives. Participants often searched to find an etiology for their illness, linking the initial occurrence of symptoms with a specific event, such as a hernia or gallbladder operation, food poisoning, or even a cat bite.
IBS symptoms began at various ages, though most subjects were in their mid-teens to mid-30s when they sought help for the first time. Some were able to relate symptoms going back to early childhood. Many noted that constipation was a frequent problem during their preschool and elementary years and visits to physicians for constipation relief during childhood were not uncommon. Several participants said that they had been colicky babies and associated this experience with their IBS.
Episodes. The participants viewed IBS as a chronic disease that affects their lives on a daily basis. Although the symptoms were usually episodic, occurring weekly to monthly and lasting hours to a few days, anticipation of the next episode affected the person between episodes.
Stress and foods were considered common but unpredictable triggers of symptom episodes. Although all participants could identify possible stressors contributing to their symptoms, they universally believed that they had little control over these stressful occasions. Foods that could be eaten without adverse affect at one time triggered severe symptoms at other times. This variable response to potential triggers was a source of great frustration to the participants.
Treatment. Self-regulated symptomatic treatment was common: using an antidiarrheal drug when an episode of diarrhea began or fiber and bran in response to constipation. Prophylactic use of antidiarrheal medications during work or before important social situations was common. Use of antidepressant drugs for other reasons was noted to improve IBS symptoms. Despite lack of specific therapy, few participants used alternative health care providers or naturopathic remedies. IBS support groups were noted to be therapeutic.
Changes in lifestyle. Most participants reported they made significant changes in their work and social lives because of IBS. Overall, IBS was felt to decrease work productivity and adversely affect the quality of work due to large amounts of time spent in the bathroom. Work days were missed as often as once a month, mainly because of cramping or diarrhea.
Participants universally reported strained social situations because of the illness. Social situations become especially difficult when eating or traveling was involved. Most subjects said they simply avoid these situations by not participating in the social event or by not eating. Many refused social invitations for fear of an IBS episode and not having access to a bathroom. This causes great strain within the family unit.
Interface with the health care system. Medical help is sought in the diagnostic stages of IBS, but afterward most participants dealt with their symptoms on their own. Most felt that their physicians were not helpful with the illness. A sense of frustration with the medical community’s lack of empathic response, a lack of any helpful remedy, and a feeling of being taken lightly was commonplace.