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参与艺术和暂息护理项目的法国年轻照顾者的简介。

Profiles of French young carers taking part in an arts and respite care program.

机构信息

Laboratoire de Psychopathologie et Processus de Santé, Université de Paris, Boulogne-Billancourt, France.

Association Nationale Jeunes AiDants Ensemble, JADE, Le Coudray-Montceaux, France.

出版信息

Health Soc Care Community. 2022 Sep;30(5):e3253-e3264. doi: 10.1111/hsc.13769. Epub 2022 Feb 24.

Abstract

Young carers (YCs) are children and adolescents who provide meaningful, regular support to a relative with a health problem. In France, only one programme exists to support them: the arts and respite care programme of the national association JADE. The aim of this study is to describe the profiles of YCs who had participated in this programme and to evaluate their expectations, opinions, and the evolution of their quality of life over the course of the programme. All YCs enrolled in the programme between 2017 and 2020 were invited to participate in the study. Upon arrival, the youths completed a self-report questionnaire addressing their sociodemographic and family situations, their caregiving activities, their quality of life, and their expectations for the programme. At the end of each week, a questionnaire evaluating their opinion of the programme and their quality of life was completed. A hundred and seventeen children participated (average age: 12; 71.8% girls). Most YCs provided support to a parent or sibling with a chronic somatic disease. The support mainly concerned doing domestic tasks and providing emotional support for the relative and was significantly higher among adolescents. Their expectations were mainly about getting respite and meeting other young people. Their levels of satisfaction were high and aligned with their expectations. Their quality of life increased significantly. French YCs in this programme had characteristics comparable to those observed internationally. The results underline the importance of respite and the benefits such a programme can bring to YCs.

摘要

年轻照顾者(YC)是指为有健康问题的亲属提供有意义的、定期支持的儿童和青少年。在法国,只有一个项目为他们提供支持:JADE 国家协会的艺术和喘息护理项目。本研究的目的是描述参与该项目的 YC 的特征,并评估他们在项目过程中的期望、意见和生活质量的变化。所有 2017 年至 2020 年期间参加该项目的 YC 都被邀请参加研究。到达后,青少年填写一份自我报告问卷,内容涉及他们的社会人口学和家庭情况、他们的照顾活动、他们的生活质量以及他们对项目的期望。每周结束时,还会完成一份评估他们对项目的意见和生活质量的问卷。共有 117 名儿童参加(平均年龄:12 岁;71.8%为女孩)。大多数 YC 为患有慢性躯体疾病的父母或兄弟姐妹提供支持。支持主要涉及家务劳动和为亲属提供情感支持,青少年的支持明显更高。他们的期望主要是得到喘息和结识其他年轻人。他们的满意度很高,与他们的期望一致。他们的生活质量显著提高。该项目中的法国 YC 具有与国际上观察到的相似的特征。结果强调了喘息的重要性以及该项目可以为 YC 带来的好处。

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Children with ill parents: extent and nature of caring activities.父母患病的儿童:护理活动的范围和性质。
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[Care: a professional concept to human limitations?].
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