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功能性残疾和社会支持在儿童型可动性埃勒斯-当洛斯综合征患者心理结局中的作用。

The role of functional disability and social support in psychological outcomes for individuals with pediatric hypermobile ehlers-danlos syndrome.

机构信息

Department of Psychology, DePaul University College of Science and Health, Chicago, IL, USA.

Department of Medical Genetics & Neurodevelopmental Center, Peyton Manning Children's Hospital, Indianapolis, IN, USA.

出版信息

J Child Health Care. 2024 Sep;28(3):486-500. doi: 10.1177/13674935221143822. Epub 2022 Dec 9.

Abstract

Hypermobile Ehlers-Danlos syndrome (hEDS) includes physical symptoms of chronic pain, fatigue, gastrointestinal dysfunction, and joint subluxations/dislocations. This study aims to fill a research gap regarding the psychosocial well-being in pediatric hEDS by assessing relationships between functional disability, social support, and mental health. Increased functional disability is hypothesized to be associated with increased mental health challenges, specifically anxiety and depression, and general social support is hypothesized to moderate this relationship, such that higher perceived social support will mitigate the negative psychological impacts of functional disability. Gender's influence on mental health in pediatric hEDS is also explored. Thirty-four youth with pediatric hEDS recruited from a United States Midwest multidisciplinary genetics clinic completed self-report questionnaires. Results demonstrate associations between functional disability and mental health, and social support and mental health independently; however, moderation was not found. Functional disability and social support each have a unique influence on the mental health of children with pediatric hEDS and should each receive clinical attention. Exploratory analyses into the influence of gender provide a groundwork for future studies.

摘要

先天性全身性弹性过度综合征(hEDS)包括慢性疼痛、疲劳、胃肠道功能障碍和关节半脱位/脱位等身体症状。本研究旨在通过评估功能障碍、社会支持和心理健康之间的关系,填补儿科 hEDS 患者心理社会健康方面的研究空白。研究假设,功能障碍的增加与心理健康挑战(特别是焦虑和抑郁)的增加有关,一般社会支持则调节这种关系,即更高的感知社会支持将减轻功能障碍的负面心理影响。本研究还探讨了性别对儿科 hEDS 患者心理健康的影响。来自美国中西部多学科遗传学诊所的 34 名青少年 hEDS 患者完成了自我报告问卷。研究结果表明,功能障碍与心理健康之间存在关联,社会支持与心理健康之间也存在关联;但是,没有发现调节作用。功能障碍和社会支持都对儿科 hEDS 患儿的心理健康有独特的影响,应引起临床关注。对性别影响的探索性分析为未来的研究奠定了基础。

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