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招募青少年年轻照顾者参与六个欧洲国家的心理社会支持干预研究:ME-WE 项目的经验教训。

Recruitment of Adolescent Young Carers to a Psychosocial Support Intervention Study in Six European Countries: Lessons Learned from the ME-WE Project.

机构信息

Department of Health and Caring Sciences, Linnaeus University, 39182 Kalmar, Sweden.

The Swedish Family Care Competence Centre (NKA), Strömgatan 13, 39232 Kalmar, Sweden.

出版信息

Int J Environ Res Public Health. 2023 Mar 14;20(6):5074. doi: 10.3390/ijerph20065074.

DOI:10.3390/ijerph20065074
PMID:36981983
原文链接:https://pmc.ncbi.nlm.nih.gov/articles/PMC10049644/
Abstract

Young carers provide a substantial amount of care to family members and support to friends, yet their situation has not been actively addressed in research and policy in many European countries or indeed globally. Awareness of their situation by professionals and among children and young carers themselves remains low overall. Thus, young carers remain a largely hidden group within society. This study reports and analyses the recruitment process in a multi-centre intervention study offering psychosocial support to adolescent young carers (AYCs) aged 15-17 years. A cluster-randomised controlled trial was designed, with recruitment taking place in Italy, the Netherlands, Slovenia, Sweden, Switzerland and the United Kingdom exploiting various channels, including partnerships with schools, health and social services and carers organisations. In total, 478 AYCs were recruited and, after screening failures, withdrawals and initial dropouts, 217 were enrolled and started the intervention. Challenges encountered in reaching, recruiting and retaining AYCs included low levels of awareness among AYCs, a low willingness to participate in study activities, uncertainty about the prevalence of AYCs, a limited school capacity to support the recruitment; COVID-19 spreading in 2020-2021 and related restrictions. Based on this experience, recommendations are put forward for how to better engage AYCs in research.

摘要

青少年照顾者为家庭成员提供了大量的照顾和支持,然而,他们的情况在许多欧洲国家甚至全球的研究和政策中都没有得到积极关注。专业人士、儿童和青少年照顾者本身对他们的情况的认识总体上仍然很低。因此,青少年照顾者仍然是社会中一个很大程度上被忽视的群体。本研究报告并分析了一项多中心干预研究的招募过程,该研究为 15-17 岁的青少年照顾者(AYCs)提供心理社会支持。该研究采用了集群随机对照试验设计,在意大利、荷兰、斯洛文尼亚、瑞典、瑞士和英国通过各种渠道进行招募,包括与学校、卫生和社会服务以及照顾者组织建立合作伙伴关系。总共招募了 478 名 AYCs,经过筛选失败、退出和最初的辍学,有 217 名参与者入组并开始接受干预。在接触、招募和留住 AYCs 方面遇到的挑战包括:AYCs 的意识水平低、参与研究活动的意愿低、对 AYCs 的流行程度不确定、学校支持招募的能力有限;2020-2021 年 COVID-19 的传播及其相关限制。基于这一经验,提出了如何更好地让 AYCs 参与研究的建议。

https://cdn.ncbi.nlm.nih.gov/pmc/blobs/9d78/10049644/fc58f2622ce8/ijerph-20-05074-g001.jpg
https://cdn.ncbi.nlm.nih.gov/pmc/blobs/9d78/10049644/fc58f2622ce8/ijerph-20-05074-g001.jpg
https://cdn.ncbi.nlm.nih.gov/pmc/blobs/9d78/10049644/fc58f2622ce8/ijerph-20-05074-g001.jpg

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本文引用的文献

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Factors Associated with the Quality-of-Life of Young Unpaid Carers: A Systematic Review of the Evidence from 2003 to 2019.与年轻无酬照顾者生活质量相关的因素:2003 年至 2019 年证据的系统评价。
Int J Environ Res Public Health. 2023 Mar 9;20(6):4807. doi: 10.3390/ijerph20064807.
2
Professionals' Awareness of Young Carers in Schools: Results from a French Survey.专业人士对学校中年轻照顾者的认知:来自法国调查的结果。
Int J Environ Res Public Health. 2022 Oct 29;19(21):14172. doi: 10.3390/ijerph192114172.
3
Research and Innovation for and with Adolescent Young Carers to Influence Policy and Practice-The European Union Funded "ME-WE" Project.
青少年照料者的研究与创新:影响政策与实践——欧盟资助的“ME-WE”项目。
Int J Environ Res Public Health. 2022 Aug 11;19(16):9932. doi: 10.3390/ijerph19169932.
4
Young Carer Perception of Control: Results of a Phenomenology with a Mixed Sample of Young Carers Accessing Support and Unknown to Services.年轻照顾者对控制的感知:一项混合样本的现象学研究结果,该研究对象为获得支持和未被服务机构知晓的年轻照顾者。
Int J Environ Res Public Health. 2022 May 20;19(10):6248. doi: 10.3390/ijerph19106248.
5
The Young Carers' Journey: A Systematic Review and Meta Ethnography.《年轻照顾者的旅程:系统评价和元民族志》。
Int J Environ Res Public Health. 2022 May 10;19(10):5826. doi: 10.3390/ijerph19105826.
6
Difficulties and Needs of Adolescent Young Caregivers of Grandparents in Italy and Slovenia: A Concurrent Mixed-Methods Study.意大利和斯洛文尼亚青少年祖辈照顾者的困难和需求:一项同期混合方法研究。
Int J Environ Res Public Health. 2022 Feb 28;19(5):2837. doi: 10.3390/ijerph19052837.
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Prevalence and characteristics of adolescent young carers in France: The challenge of identification.法国青少年儿童照料者的患病率及特征:识别方面的挑战。
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