Department of Health and Caring Sciences, Linnaeus University, 39182 Kalmar, Sweden.
The Swedish Family Care Competence Centre (NKA), Strömgatan 13, 39232 Kalmar, Sweden.
Int J Environ Res Public Health. 2023 Mar 14;20(6):5074. doi: 10.3390/ijerph20065074.
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.
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。