Pihl-Lesnovska Katarina, Hjortswang Henrik, Ek Anna-Christina, Frisman Gunilla Hollman
Department of Endocrinology and Gastroenterology, University Hospital, Linköping, Sweden.
Gastroenterol Nurs. 2010 Jan-Feb;33(1):37-44; quiz 45-6. doi: 10.1097/SGA.0b013e3181cd49d0.
Crohn disease is a chronic inflammatory bowel disease of unknown etiology. The chronic, relapsing nature of Crohn disease produces physical, psychological, and social stress. The disease occurs early in life, and the effects of Crohn disease on daily life are associated with symptom burden; thus, managing their disease and coping with its impact is a lifelong process for sufferers. This study was undertaken to identify and describe the meaning of quality of life in patients with Crohn disease. Using a grounded theory methodology, 11 interviews were performed with 6 men and 5 women, 29-83 years of age, all suffering from Crohn disease. The experience of quality of life was associated with limitations in daily activity, the major theme that emerged from the analysis. Quality of life varied depending on how the patient managed limitations related to the symptoms of the disease. The categories of self-image, confirmatory relations, powerlessness, attitude toward life, and sense of well-being were conceptualized as the dominant themes derived from the data. When caring for these patients, it is important to identify limitations and provide support so that patients are able to maintain a daily life that can be perceived as normal and routine.
克罗恩病是一种病因不明的慢性炎症性肠病。克罗恩病的慢性复发性会产生身体、心理和社会压力。该疾病在生命早期就会出现，其对日常生活的影响与症状负担相关；因此，对患者来说，管理疾病并应对其影响是一个终身过程。本研究旨在识别并描述克罗恩病患者生活质量的意义。采用扎根理论方法，对6名男性和5名女性、年龄在29至83岁之间且均患有克罗恩病的患者进行了11次访谈。生活质量体验与日常活动受限相关，这是分析中出现的主要主题。生活质量因患者应对与疾病症状相关的限制的方式而异。自我形象、确认关系、无力感、生活态度和幸福感等类别被概念化为从数据中得出的主要主题。在护理这些患者时，识别限制并提供支持非常重要，以便患者能够维持一种可被视为正常和日常的生活。
