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患癌青少年的症状困扰与生活状况

Symptom distress and life situation in adolescents with cancer.

作者信息

Enskär K, Carlsson M, Golsäter M, Hamrin E

机构信息

Department of Caring Sciences, Faculty of Health Sciences, University of Linköping, Sweden.

出版信息

Cancer Nurs. 1997 Feb;20(1):23-33. doi: 10.1097/00002820-199702000-00004.

Abstract

Having a life-threatening disease like cancer during adolescence poses a number of problems. The purpose of this study was to identify the adolescent's own experience of areas of the life situation affected by the disease and problems related to it. Ten adolescents with varying diagnoses and treatment were interviewed. They also completed a quantitative measurement of problems. The result shows eight domains and 24 subdomains influencing the experience of life situation. Those were disease and treatment (side effects, isolation, medical procedures), identification (others are ill, appearance), feelings and reactions (mood, self-image, meaning, hope), coping (positive thinking, distraction, positive effects), togetherness (family, friends, school), support (family and friends, the youth association, professional support), reactions of the families (parents, siblings), and quality of care (professionalism, information, organization, equipment). The problems mentioned in the interviews are also compared with the quantitative measurement used. The adolescents mentioned 77 problems in the interviews, of which 17 were not on the list of problems. Of those 17, seven dealt with physical problems, and six were problems concerning the quality of care. They ranked wanting and depending on parents as the worst problems for themselves from the list of problems.

摘要

青少年时期患上像癌症这样危及生命的疾病会带来许多问题。本研究的目的是确定青少年自身在受疾病影响的生活状况领域以及与之相关问题上的经历。对十名患有不同疾病且接受不同治疗的青少年进行了访谈。他们还完成了一份关于问题的定量测量。结果显示有八个领域和二十四个子领域影响生活状况体验。这些领域包括疾病与治疗(副作用、隔离、医疗程序)、身份认同(其他人患病、外貌)、感受与反应(情绪、自我形象、意义、希望)、应对方式(积极思考、转移注意力、积极影响)、陪伴(家庭、朋友、学校)、支持(家庭与朋友、青年协会、专业支持)、家庭反应(父母、兄弟姐妹)以及护理质量(专业素养、信息、组织、设备)。访谈中提到的问题也与所使用的定量测量结果进行了比较。青少年在访谈中提到了77个问题,其中17个不在问题列表中。在这17个问题中,7个涉及身体问题,6个是关于护理质量的问题。他们将渴望并依赖父母列为问题列表中对自己来说最糟糕的问题。

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