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克罗恩病患者的疾病相关担忧:一项访谈研究

Disease-Related Worries in Persons With Crohn Disease: An Interview Study.

作者信息

Wåhlin Monica, Stjernman Henrik, Munck Berit

机构信息

Monica Wåhlin, MSc, RN, is a registered nurse specializing in inflammatory bowel disease, Department of Medicine, County Hospital Ryhov, County Council of Jönköping, Jönköping, Sweden. Henrik Stjernman, PhD, MD, is Chief Physician, Department of Medicine, County Hospital Ryhov, County Council of Jönköping, Jönköping, Sweden. Berit Munck, PhD, RN, is District Nurse, and Senior Lecturer, Department of Nursing Science, School of Health and Welfare, Jönköping University, Jönköping, Sweden.

出版信息

Gastroenterol Nurs. 2019 Sep/Oct;42(5):435-442. doi: 10.1097/SGA.0000000000000395.

Abstract

Crohn disease, a chronic inflammatory bowel disease, affects everyday life, impairs quality of life, and creates worries. This study explored disease-related worries in persons with Crohn disease to gain deeper insight into how this worry is experienced and handled. Eight women and 4 men with Crohn disease who reported their disease-related worries as high or very high in a questionnaire were interviewed. The interviews were evaluated by qualitative content analysis, generating 3 categories: worries about the disease itself; feelings related to the worries; and management of the worries. The unpredictable course of the disease, impaired function due to fatigue, and lack of bowel control were the most prominent causes of worry. The worries created feelings of stress, guilt, and frustration. The participants expressed a need to talk about their worries, to make them visible and recognized, and to be understood. The participants found individual ways to handle the worries. Actively gaining control by changing focus, performing relaxation exercises, and seeking information were important self-care strategies. In addition, a strong and partially unmet need for expressing and venting concerns to one's caregiver was identified.

摘要

克罗恩病是一种慢性炎症性肠病,会影响日常生活,损害生活质量,并引发担忧。本研究探讨了克罗恩病患者与疾病相关的担忧,以更深入地了解这种担忧是如何被体验和处理的。对8名女性和4名男性克罗恩病患者进行了访谈,这些患者在问卷中报告其与疾病相关的担忧程度为高或非常高。通过定性内容分析对访谈进行评估,得出3个类别:对疾病本身的担忧;与担忧相关的感受;以及对担忧的处理。疾病的不可预测病程、因疲劳导致的功能受损以及肠道控制能力缺失是最主要的担忧原因。这些担忧产生了压力、内疚和挫败感。参与者表示需要谈论他们的担忧,使其被看到和认可,并被理解。参与者找到了各自处理担忧的方式。通过改变关注点、进行放松练习和寻求信息来积极掌控局面是重要的自我护理策略。此外,还发现了一种强烈且部分未得到满足的需求,即向照顾者表达和倾诉担忧。

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