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儿童癌症或白血病幸存者的社会心理方面

Psychosocial aspects of survivors of childhood cancer or leukemia.

作者信息

Massimo L, Zarri D, Caprino D

机构信息

Dipartimento di Ematologia e Oncologia Pediatrica, Istituto Giannina Gaslini, IRCCS, Genova.

出版信息

Minerva Pediatr. 2005 Dec;57(6):389-97.

Abstract

The majority of childhood cancer patients can expect nowadays to be cured and the percentage is now between 70% and 80%. The number of long-term survivors, off- threatment for at least 5 years, is rising rapidly and is becoming a new population, which needs a special care. It is becoming increasingly important to know how to prevent and treat the physical late effects as well as the psychosocial ones. The oldest among these patients are now in their 40's. How will their old age be like? Are they really cured? The aim of this study is to present a detailed survey of the literature on this topic as well as the authors' personal experience. Several techniques of psychological investigation for this population are highlighted. The semistructured interviews are mostly used for mono-institutional research, while the narrative dialogues are useful for small groups of patients. Questionnaires are usually conducted by epidemiologists for large groups of survivors. Tests are used for specific items such as defense mechanisms, self-esteem, relationships within the family, fear, and panic. The evaluation of the post-traumatic stress disorder is considered and the most important literature data are reported. It is also stressed the need of prevention of any type of psychosocial distress. In conclusion, most of the survivors appear to lead normal adult lives, to have obtained high school degrees, good jobs, and several have families and children. Nevertheless, a small percentage show some psychological or social problems, such as anxiety, depression, fear over the future or over relapse, a second primary, or sterility. The most vulnerable among them are females, people in poor financial conditions, the unemployed and those with poor educations.

摘要

如今,大多数儿童癌症患者有望被治愈,治愈率在70%至80%之间。长期存活者的数量,即那些至少已结束治疗5年的患者,正在迅速增加,并正在形成一个需要特殊护理的新群体。了解如何预防和治疗身体上的后期影响以及心理社会方面的影响变得越来越重要。这些患者中年龄最大的现在已40多岁。他们的老年生活会是怎样的呢?他们真的被治愈了吗?本研究的目的是对关于这一主题的文献以及作者的个人经验进行详细综述。重点介绍了针对这一群体的几种心理调查技术。半结构化访谈大多用于单机构研究,而叙事对话对小群体患者很有用。问卷调查通常由流行病学家针对大批幸存者进行。测试用于特定项目,如防御机制、自尊、家庭关系、恐惧和恐慌。文中考虑了创伤后应激障碍的评估,并报告了最重要的文献数据。还强调了预防任何类型心理社会困扰的必要性。总之,大多数幸存者似乎过着正常的成年生活,获得了高中学历,有不错的工作,还有一些人有家庭和孩子。然而,一小部分人存在一些心理或社会问题,如焦虑、抑郁、对未来或复发、二次原发疾病或不育的恐惧。其中最脆弱的是女性、经济状况不佳者、失业者和受教育程度低的人。

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