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Critical Situations in Daily Life as Experienced by Patients With Inflammatory Bowel Disease
Katarina Pihl Lesnovska1, Gunilla Hollman Frisman, Henrik Hjortswang
1Katarina Pihl Lesnovska, MSc, RN, is PhD Student, Heart and Medicine Centre, Department of Gastroenterology and Hepatology, County Council of Östergötland, and Department of Medical and Health Sciences, Linköping University, Linköping, Sweden. Gunilla Hollman Frisman, PhD, RN, is Associate Professor, Department of Medical and Health Sciences, Linköping University, and Anaesthetics, Operations and Speciality Surgery Centre, County Council of Östergötland, Linköping, Sweden. Henrik Hjortswang, PhD, MD, is Associate Professor, Heart and Medicine Centre, Department of Gastroenterology and Hepatology, County Council of Östergötland, and Department of Clinical and Experimental Medicine, Linköping University, Linköping, Sweden. Sussanne Börjeson, PhD, RN, Associate Professor, Department of Medical and Health Sciences, Linköping University, Sweden.
Insights
Living with inflammatory bowel disease (IBD) presents daily challenges. Patients experience critical incidents, often feeling their bowels rule their lives, impacting social interactions and careers.
Area of Science:
- Gastroenterology
- Psychology
- Sociology
Background:
- Inflammatory bowel disease (IBD), encompassing Crohn's disease and ulcerative colitis, is a chronic condition with unpredictable symptoms.
- Daily life with IBD involves constant worry about disease-related limitations.
- There is a lack of understanding regarding how IBD patients manage critical incidents.
Purpose of the Study:
- To explore and describe the experiences of patients with IBD regarding critical incidents in their daily lives.
- To understand the relationship between these critical incidents, the disease, and its symptoms.
Main Methods:
- Qualitative study involving interviews with 30 adult patients diagnosed with IBD.
- Critical Incident Technique (CIT) was employed to gather and analyze data.
- 224 critical incidents were collected and categorized.
Main Results:
- Five main categories of critical incidents emerged: loss of bowel control, body odor concerns, unmet expectations, disbelief from others, and treatment-related frustrations.
- These incidents coalesced into a central theme: "The bowels rule life."
- Uncertainty in IBD led to social avoidance, significant family burden, and negative career impacts.
Conclusions:
- The unpredictable nature of IBD significantly disrupts patients' daily lives, leading to critical incidents.
- "The bowels rule life" encapsulates the profound impact of IBD on patient autonomy and social engagement.
- IBD management strategies must address the psychological and social consequences beyond purely clinical symptoms.
Abstract:
Crohn disease and ulcerative colitis, collectively known as inflammatory bowel disease (IBD), are chronic and have a fluctuating clinical course that impacts daily life. Daily life with a chronic disease involves thinking and worrying about the limitations that chronic disease causes. Knowledge about how patients who suffer from IBD manage critical incidents in daily life is lacking. The aim of the study was to describe how patients living with IBD experience critical incidents in daily life in relation to their disease and symptoms. Thirty adult patients were interviewed focusing on critical incidents in daily life. Data were analyzed using the critical incident technique. The study comprised 224 critical incidents and was grouped into 21 subcategories and 5 categories: losing bowel control, having a body that smells, being unable to meet own and others' expectations, not being believed or seen, and experiencing frustration due to side effects and ineffective treatment. These categories formed one main area describing the overall result "The bowels rule life." The uncertain nature of IBD created critical incidents in which the bowel ruled life, causing patients to avoid social interaction. It also placed considerable demands on the family and sometimes had a negative effect on the afflicted person's career.
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