Rao Sandy, Dimitropoulos Gina, Jardine Rae, Quickstad Julien, Satam Laetitia, Qureshi Mohammad, Bui Thyra, Todorova Antoaneta Alexandrova, Tumaneng Ysabelle, Suthakaran Abitha, Dalley Kaiden, Smith Stacie, Patten Scott B
Faculty of Social Work, University of Calgary, Calgary, Canada.
Mental Health Accessibility and Policy Solutions Lab, Mississauga, ON, Canada.
Res Involv Engagem. 2024 May 8;10(1):45. doi: 10.1186/s40900-024-00576-0.
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.
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.
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.
本手稿由15名有精神健康亲身经历的青年成年患者研究伙伴（PARES）以及加拿大各地参与一项名为“HEARTS研究：帮助实现准入并消除支持患有精神健康相关残疾的青年成年人的障碍”的以患者为导向的研究（POR）的三名机构研究人员共同撰写。在应对POR领域缺乏清晰度、等级结构、内化的能力主义以及可及性挑战等问题时，我们分享了自己的思考、经历和经验教训。为了缓解POR的困难，我们首先通过秉持“平等者中的首位”原则奠定平等基础，以此作为我们方法的根基。通过这种方式，我们从我们确定知晓的事情入手：青年成年人作为平等伙伴所具有的内在价值和尊严，认可他们的专业知识、世界观、创造力以及有意义且有目的地为影响他们生活和未来的研究做出贡献的能力。
该手稿强调有必要重新构想POR中有意义的参与方式，主张从未能解决患有精神疾病的青年成年人所面临的复杂性的传统、有偏见的范式转变。它引入了我们所称的“适应性和差异性参与”，强调根据个人偏好和情况调整参与方式的必要性，同时还引入了一种三方补偿模式，该模式促进研究合作中的公平和全面报酬。然后我们讨论了我们构想的方法，如公平对话、信任架构、社区连续体、多元统一、共同管理和敏捷框架，这些方法共同旨在克服诸如语言威慑、权力不平衡、框架疲劳、咨询倦怠、信任赤字以及系统性歧视和排斥等障碍。该手稿并非试图规定任何通用或标准化的解决方案；事实上，它追求的恰恰相反。相反，它为POR准则提供了深思熟虑且透明的贡献，为渴望参与研究的青年成年人以及有志与他们合作的机构研究人员提供资源。
本手稿是我们集体学习和批判性自我评估的产物。通过将理论见解与实际策略相结合，我们提出了一个以公正为导向的蓝图，用于一种包容和平等的POR方法。我们倡导将POR应用于响应青年成年PARES的个性化背景，确保他们的观点在研究中处于核心地位，并且如果他们愿意，有资源带头开展研究。
