Trinity Centre for Global Health, Trinity College Dublin, Dublin, Ireland.
School of Psychology, Trinity College Dublin, Dublin, Ireland.
Health Expect. 2024 Feb;27(1):e13980. doi: 10.1111/hex.13980.
Less than 1% of studies on child and adolescent health report the involvement of adolescents in health research. This is attributed to barriers experienced by researchers and adolescents in the engagement process. To address this under-involvement of adolescents, we first need a better understanding of the factors that hinder adolescent involvement in health research.
We conducted an umbrella review of reviews to consolidate the review-level evidence on the barriers to meaningful involvement of adolescents in health research.
We preregistered this umbrella review of reviews with PROSPERO (CRD42021287467). We searched 11 databases; Google Scholar; and PROSPERO; supplemented by a hand search of the reference lists of eligible reviews, relevant journals, websites of 472 organisations, and input from experts. This resulted in the inclusion of 99 review articles exploring adolescent involvement in studies on adolescent physical or mental health, which were narratively synthesised. Adolescent coresearchers were engaged at all stages of the review.
We found that adolescent involvement in health research is impeded by several challenges experienced by researchers and adolescents. Some challenges experienced by researchers were organisational issues which included limited resources, gatekeeping and paying adolescents. Some barriers were related to a lack of preparedness among researchers and included a lack of awareness of adolescent involvement, the need for training and guidance, and negative attitudes towards participatory research. There were also barriers around how adolescents can be involved, such as researchers finding it challenging to adapt to new methods, issues with recruitment and retention of adolescents, inclusiveness and accessibility. There were also challenges specific to adolescents, such as adolescents' skills and expertise, training, motivations and study goals. Finally, barriers related to the ethical involvement of adolescents included issues with power dynamics, confidentiality, safety and protection of adolescents. Some of the barriers reported by adolescents included tokenistic involvement, inaccessibility of adolescent involvement, and their competing demands.
Researchers may find this review useful in understanding and planning for potential challenges of involving adolescents in research. Despite many identified barriers to adolescent engagement, few mitigation strategies were identified to address these barriers. There is a clear need to establish best practices for meaningful adolescent involvement in health research.
Adolescents were involved at multiple stages of this umbrella review of reviews. They reviewed the protocol, screened 25% of the articles at title and abstract screening stage, screened 10% of full-text articles, and worked on data analysis. They also helped plan and conduct a participatory workshop with an adolescent advisory group to discuss the challenges experienced by adolescents in health research.
在儿童和青少年健康研究中，不到 1%的研究报告了青少年参与健康研究的情况。这归因于研究人员和青少年在参与过程中遇到的障碍。为了解决这种青少年参与不足的问题，我们首先需要更好地了解阻碍青少年参与健康研究的因素。
我们对综述进行了伞式综述，以综合评估阻碍青少年在健康研究中进行有意义参与的综述层面证据。
我们在 PROSPERO（CRD42021287467）上预先注册了这项伞式综述。我们搜索了 11 个数据库；Google Scholar；和 PROSPERO；并补充了合格综述的参考文献列表、相关期刊、472 个组织的网站以及专家的输入的手工搜索。这导致纳入了 99 篇探讨青少年参与青少年身体或心理健康研究的综述文章，对这些文章进行了叙述性综合。青少年核心研究人员在审查的各个阶段都参与其中。
我们发现，青少年参与健康研究受到研究人员和青少年遇到的一些挑战的阻碍。研究人员遇到的一些挑战是组织问题，包括资源有限、把关和支付青少年费用。一些障碍与研究人员的准备不足有关，包括缺乏对青少年参与的认识、培训和指导的需求以及对参与式研究的负面态度。在如何让青少年参与方面也存在一些障碍，例如研究人员发现难以适应新方法、招募和留住青少年、包容性和可及性方面的问题。青少年自身也存在一些挑战，例如青少年的技能和专业知识、培训、动机和研究目标。最后，与青少年伦理参与相关的障碍包括权力动态、保密性、安全性和对青少年的保护问题。一些青少年报告的障碍包括象征性参与、青少年参与的不可及性以及他们的竞争需求。
研究人员可能会发现本综述有助于理解和规划在研究中涉及青少年的潜在挑战。尽管有许多阻碍青少年参与的障碍，但很少有减轻这些障碍的策略。显然需要为青少年在健康研究中有意义的参与制定最佳实践。
青少年在这项伞式综述的多个阶段都参与其中。他们审查了方案，在标题和摘要筛选阶段筛选了 25%的文章，筛选了 10%的全文文章，并参与了数据分析。他们还帮助计划并与青少年咨询小组一起举办了一个参与式研讨会，讨论青少年在健康研究中遇到的挑战。
