Pihl Lesnovska Katarina, Hollman Frisman Gunilla, Hjortswang Henrik, Börjeson Sussanne
Katarina 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.
Gastroenterol Nurs. 2016 May-Jun;39(3):195-203. doi: 10.1097/SGA.0000000000000211.
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.
克罗恩病和溃疡性结肠炎统称为炎症性肠病（IBD），是一种慢性病，其临床病程波动，会影响日常生活。患有慢性病的日常生活涉及对慢性病所造成的限制进行思考和担忧。目前缺乏关于炎症性肠病患者如何应对日常生活中的关键事件的相关知识。本研究的目的是描述炎症性肠病患者在日常生活中如何经历与疾病和症状相关的关键事件。对30名成年患者进行了访谈，重点关注日常生活中的关键事件。使用关键事件技术对数据进行了分析。该研究包含224个关键事件，分为21个亚类和5个类别：肠道失控、身体有异味、无法满足自己和他人的期望、不被信任或关注、因副作用和治疗无效而感到沮丧。这些类别构成了一个主要领域，描述了“肠道主宰生活”这一总体结果。炎症性肠病的不确定性引发了关键事件，在这些事件中肠道主宰生活，导致患者避免社交互动。它也给家庭带来了相当大的负担，有时还会对患者的职业产生负面影响。
