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青少年饮食障碍患者的兄弟姐妹的经历。

The experience of siblings of adolescents with eating disorders.

机构信息

Division of Adolescent Medicine, Departments of Pediatrics, The Hospital for Sick Children, University of Toronto, Toronto, Ontario, Canada.

出版信息

J Adolesc Health. 2010 Jun;46(6):569-76. doi: 10.1016/j.jadohealth.2009.12.011. Epub 2010 Feb 11.

Abstract

PURPOSE

To qualitatively and quantitatively explore the experience and QOL of siblings of AEDs. To date, there is little research on the quality of life (QOL) and the effect an eating disorder (ED) has on the siblings of adolescents with an eating disorder (AEDs).

METHODS

Siblings were recruited between January 2008 and April 2008. Inclusion criteria included siblings aged 10-18 years old and living with a sibling with an ED. Exclusion criteria included having an ED, or major psychiatric disorder, or a communication problem that interfered with their participation. Siblings completed a general assessment questionnaire, the Pediatric Quality of Life inventory 4.0 Generic Core Scales and Eating Attitudes Test-26 (EAT-26). Focus group interviews were conducted until saturation was achieved and thematic analysis was employed.

RESULTS

Twenty siblings (14 females) of 17 AEDs (15 females) participated. All but one sibling scored within the normal range for the Eating Attitudes Test-26. Key themes identified included a desire to understand the ED, acute awareness of ED behaviors and thoughts, challenges in understanding noneating-related obsessive behaviors, increase in family conflict and arguments, compassion and concern for the AED, feelings of loss and sacrifice, overwhelming sense of responsibility for the AED, and a sense of pervasiveness of the ED in all aspects of their lives. The siblings' accounts of these themes were noted to be fraught with contradictions. Eighty percent reported that their QOL was negatively affected by the onset of their siblings' ED.

CONCLUSION

Clinical attention and further research into the experience of siblings of adolescents with ED is needed.

摘要

目的

定性和定量探讨抗癫痫药物(AED)患者兄弟姐妹的经历和生活质量(QOL)。迄今为止,关于生活质量(QOL)以及饮食障碍(ED)对青少年 AED 患者兄弟姐妹的影响的研究甚少。

方法

在 2008 年 1 月至 2008 年 4 月期间招募了兄弟姐妹。纳入标准包括年龄在 10-18 岁之间且与患有 ED 的兄弟姐妹同住的兄弟姐妹。排除标准包括患有 ED、或严重精神疾病、或存在妨碍其参与的沟通问题。兄弟姐妹完成了一般评估问卷、儿科生活质量量表 4.0 通用核心量表和饮食态度测验-26(EAT-26)。进行焦点小组访谈,直到达到饱和状态并采用主题分析。

结果

共有 17 名 AED(15 名女性)的 20 名兄弟姐妹(14 名女性)参与了研究。除了一名兄弟姐妹外,其余的 EAT-26 得分均在正常范围内。确定的主要主题包括渴望了解 ED、对 ED 行为和想法的敏锐意识、难以理解与饮食无关的强迫行为、家庭冲突和争吵增加、对 AED 的同情和关注、失落感和牺牲感、对 AED 的强烈责任感以及对 ED 在他们生活各个方面的普遍感。兄弟姐妹对这些主题的描述充满了矛盾。80%的人报告说,他们的生活质量因兄弟姐妹的 ED 发作而受到负面影响。

结论

需要关注青少年 ED 患者兄弟姐妹的经历,并进一步开展相关研究。

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