背景:该手稿由15名年轻的成年患者RESearch合作伙伴(PARES)共同撰写,这些合作伙伴具有生活和生活的心理健康经验,加拿大三名机构研究人员参与了一项名为“心脏研究:帮助进入并消除障碍,以支持与心理健康相关的年轻人。我们分享我们的思考,在我们努力应对POR领域的经验和教训时,层次结构,内化能力,和无障碍挑战,在其他人中。为了减轻POR的困难,我们首先通过接受PrimusInterPares:首先在平等中作为我们方法的基础的原则,为平等奠定了基础。这样,我们从我们所知道的开始:年轻人作为平等伙伴的固有价值和尊严,认识到他们的专业知识,世界观,创造力,以及为影响他们生活和未来的研究做出有意义和有意的贡献的能力。
方法:手稿强调需要重新概念化有意义的参与POR,提倡从传统的转变,有偏见的范式无法解决患有精神疾病的年轻人所面临的复杂性。它介绍了我们所谓的自适应和差分参与,强调根据个人偏好和情况调整参与的必要性,以及促进研究合作中公平和整体薪酬的三方薪酬模式。然后我们讨论我们已经概念化的方法,如公平对话,信任架构,社区连续体,多样性中的统一,共享管理,和敏捷框架共同致力于克服语言恐吓等障碍,功率失衡,框架疲劳,咨询倦怠,信任赤字,系统性歧视和排斥。手稿并不寻求规定任何普遍或标准化的解决方案;事实上,它寻求的是相反的。相反,它为POR佳能提供了周到和透明的贡献,为渴望参与研究的年轻人和渴望与他们合作的机构研究人员提供资源。
结论:这份手稿是我们集体学习和批判性自我评价的产物。通过将理论见解与实践策略相结合,我们提出了一个以正义为导向的蓝图,以包容和平等的方式来处理POR。我们提倡POR的应用,以响应年轻成人PARES的个性化背景,确保他们的观点是研究的核心,并有资源在他们选择时带头。
和一个研究生一起,共同主管,来自加拿大各地的15名年轻人有心理健康挑战的经验,本文探讨了将年轻人作为患者研究伙伴的研究如何更好。我们觉得应该包括我们的研究类型往往不够清楚,很难加入,特别是那些有独特生活情况和健康问题的人。所以,在本文中,我们提出了一些新的做事方式,让每个人都得到平等对待。我们称之为PrimusInterPARES:第一。这意味着年轻人在研究中与其他任何人一样重要。我们想改变那些不考虑我们作为有心理健康问题的年轻人的独特经历的旧方式。我们提出了新的想法,如“公平对话”和“信任架构”,以确保每个人都理解研究,并认为他们可以信任这个过程。我们还建议如何确保听到不同的声音,并且每个人都有公平的机会做出贡献。我们不只是提供一个放之四海而皆准的解决方案;相反,我们分享了许多改进研究的方法,以帮助希望参与研究的年轻人和希望与我们合作的研究人员。我们的论文是关于使研究公平,并包括每个人的观点。我们希望这将使每个人的研究更好,特别是对于年轻人。
BACKGROUND: This manuscript is coauthored by 15 young adult Patient RESearch partners (PARES) with lived and living mental health experiences and three institutional researchers across Canada involved in a patient-oriented research (POR) study called the HEARTS Study: Helping Enable Access and Remove Barriers To Support for Young Adults with Mental Health-Related Disabilities. We share our reflections, experiences and lessons learned as we grapple with the field of POR for its lack of clarity, hierarchical structures, internalized ableism, and accessibility challenges, among others. To mitigate the difficulties of POR, we started by laying the groundwork for equality by embracing the principle of Primus Inter Pares: First Among Equals as the foundation of our approach. In this way, we began with what we know for certain: the inherent worth and dignity of young adults as equal partners, recognizing their expertise, worldviews, creativity, and capacity to contribute meaningfully and intentionally to the research that affects their lives and futures.
METHODS: The manuscript underscores the need to reconceptualize meaningful engagement in POR, advocating a shift from traditional, biased paradigms that fail to address the complexities faced by young adults with mental illness. It introduces what we have termed Adaptive and Differential Engagement, underscoring the necessity of tailoring participation to individual preferences and circumstances alongside a Tripartite Compensation model that promotes fair and holistic remuneration in research collaborations. Then we discuss the approaches we have conceptualized, such as Equitable Dialogue, Trust Architecture, Community Continuum, Unity in Diversity, Shared Stewardship, and Agile Frameworks that collectively aim to overcome barriers like language intimidation, power imbalances, framework fatigue, consultation burnout, trust deficits, and systemic discrimination and exclusion. The manuscript does not seek to prescribe any universal or standardized solutions; in fact, it seeks the opposite. Instead, it offers a thoughtful and transparent contribution to the POR canon, providing resources for young adults eager to engage in research and institutional researchers aspiring to collaborate with them.
CONCLUSIONS: This manuscript is a product of our collective learning and critical self-evaluation. By integrating theoretical insights with practical strategies, we present a justice-oriented blueprint for an inclusive and egalitarian approach to POR. We advocate for applications of POR that are responsive to the individualized contexts of young adult PARES, ensuring their perspectives are central to the research with the resources to take the lead should they choose.
Together with a graduate student, co-supervisors, and 15 young people from across Canada who have experience with mental health challenges, this paper looks at how research involving young adults as patient research partners can be better. We feel that the types of research that are supposed to include us are often not clear enough and make it hard to join, especially those with unique life situations and health issues. So, in this paper, we suggest a few new ways of doing things where everyone is treated equally. We call it Primus Inter PARES: First Among Equals. This means young people are just as important as anyone else in research.We want to change the old ways that do not consider our unique experiences as young people with mental health issues. We came up with new ideas like \'Equitable Dialogue\' and \'Trust Architecture\' to ensure everyone understands the research and feels that they can trust the process. We also suggest ways to make sure different voices are heard and that everyone has a fair chance to contribute.We do not just offer a one-size-fits-all solution; instead, we share many ways to improve research to help young adults who want to be part of research and for the researchers who want to work with us. Our paper is about making research fair and including everyone\'s point of view. We hope this will make the research better for everyone, especially for young adults.