研究方案：瑞士的青少年照料者和青年照料者
Study protocol: young carers and young adult carers in Switzerland.
作者信息
Leu Agnes, Jung Corinna, Frech Marianne, Sempik Joe, Moser Urs, Verner Martin, Becker Saul
机构信息
Kalaidos University of Applied Sciences, Careum Research, Pestalozzistrasse 7, CH-8032, Zurich, Switzerland.
Institut für Hausarztmedizin der Universität Zürich, UniversitätsSpital Zurich, Pestalozzistrasse 24, CH-8091, Zurich, Switzerland.
出版信息
BMC Health Serv Res. 2018 Mar 15;18(1):183. doi: 10.1186/s12913-018-2981-5.
BACKGROUND
In Switzerland, the issue of young carers and young adult carers - young people under the age of 18 and 24 respectively, who take on significant or substantial caring tasks and levels of responsibility that would usually be associated with an adult - has not been researched before. The number of these younger carers is unknown, as is the extent and kind of their caring activities and the outcomes for their health, well-being, psycho-social development, education, transitions to adulthood, future employability and economic participation.
METHODS
The project is comprised of three stages: 1. A national Swiss-wide online survey to examine awareness of the issue of younger carers amongst professional populations in the education, health and social services sectors; 2. An online survey of 4800 Swiss pupils in schools using standardised instruments to identify the proportion and characteristics of pupils who are carers; and 3. Semi-structured interviews with 20 families comprising family members with care needs and younger carers, to consolidate and validate the other stages of the study; and to hear directly from care-dependent family members and younger carers about their experiences of the issues identified in the surveys and in previous published research.
DISCUSSION
The needs of younger carers and their ill and disabled family members in Switzerland have not been systematically investigated. This will be the first study in the country to investigate these issues and to develop evidence-based recommendations for policy and practice, drawing also on international research. The present study therefore fills an important national and international research gap. It will collect important data on the awareness, extent, kind and impact of caring amongst children and young people in Switzerland, and cross-link these findings with robust evidence from other countries. The study will reveal (a) the extent of awareness of the issue of young carers amongst medical, social, health, educational, and other groups in Switzerland; (b) the proportion and number of young carers amongst a normative child population, and what these young carers 'do' in terms of their caring roles; and
背景
在瑞士，年轻照料者和青年照料者的问题——分别指18岁以下和24岁以下承担通常与成年人相关的重大或实质性照料任务及责任水平的年轻人——此前尚未得到研究。这些年轻照料者的数量未知，他们照料活动的范围和种类以及对其健康、幸福、心理社会发展、教育、向成年过渡、未来就业能力和经济参与的影响也同样未知。
方法
该项目包括三个阶段：1. 在瑞士全国范围内开展在线调查，以考察教育、卫生和社会服务部门专业人群对年轻照料者问题的认知；2. 对4800名瑞士在校学生进行在线调查，使用标准化工具确定照料者学生的比例和特征；3. 对20个家庭进行半结构化访谈，这些家庭包括有照料需求的家庭成员和年轻照料者，以巩固和验证研究的其他阶段；并直接听取依赖照料的家庭成员和年轻照料者对调查及此前已发表研究中所确定问题的经历。
讨论
瑞士年轻照料者及其患病和残疾家庭成员的需求尚未得到系统调查。这将是该国第一项研究这些问题并为政策和实践制定基于证据的建议的研究，同时也借鉴国际研究。因此，本研究填补了重要的国内和国际研究空白。它将收集关于瑞士儿童和年轻人照料意识、范围、种类和影响的重要数据，并将这些发现与其他国家的有力证据相互关联。该研究将揭示：(a) 瑞士医疗、社会、卫生、教育和其他群体对年轻照料者问题的认知程度；(b) 正常儿童群体中年轻照料者的比例和数量，以及这些年轻照料者在其照料角色方面“做什么”；以及
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