RESUMO
BACKGROUND: Current practices for engaging patients in patient-oriented research (POR) result in a narrow pool of patient perspectives being reflected in POR. This project aims to address gaps in methodological knowledge to foster diversity in POR, through the co-design and evaluation of a series of educational modules for health researchers in British Columbia, Canada. METHODS: Modules were co-created by a team of academic researchers and patient partners from hardly-reached communities. The modules are presented using the Tapestry Tool, an interactive, online educational platform. Our evaluation framework focused on engagement, content quality, and predicted behavior change. The User Engagement Scale short form (UES-SF) measured participants' level of engagement with the modules. Survey evaluation items assessed the content within the modules and participants' perceptions of how the modules will impact their behavior. Evaluation items modeled on the theory of planned behavior, administered before and after viewing the modules, assessed the impact of the modules on participants' perceptions of diversity in POR. RESULTS: Seventy-four health researchers evaluated the modules. Researchers' engagement and ratings of module content were high. Subjective behavioral control over fostering diversity in POR increased significantly after viewing the modules. CONCLUSIONS: Our results suggest the modules may be an engaging way to provide health researchers with tools and knowledge to increase diversity in health research. Future studies are needed to investigate best practices for engaging with communities not represented in this pilot project, such as children and youth, Indigenous Peoples, and Black communities. While educational interventions represent one route to increasing diversity in POR, individual efforts must occur in tandem with high-level changes that address systemic barriers to engagement.
Patient-Oriented research (POR) recognizes patients as partners in the research process, contributing valuable knowledge and lived experience to improve health outcomes and research translation. Unfortunately, POR presently does not represent all patients: patient partners involved in research tend to be white, middle-class women. Limited diversity in POR may limit research impact, in part because health research is not fully inclusive of the people requiring healthcare services and support. Although they recognize the need for diversity, many health researchers do not understand how to foster this. To empower health researchers with tools and knowledge to foster diversity in POR, we coordinated teams that co-created a set of educational modules. These teams included academic researchers and patient partners from seldom-heard communities in health research. The modules were built using the Tapestry Tool, an interactive, educational platform. We evaluated the modules using online surveys of 74 health researchers for three things: quality of module content, how engaging they were, and how they impacted health researchers' views on diversity in POR. Our results show that the modules' content was high quality and engaging. After viewing the modules, health researchers were more likely to feel like they had a role in engaging with more diverse people in their research, and felt that they had the tools, knowledge, and ability to do so. Education and knowledge for health researchers are a first step to increasing diversity in POR settings, but systemic barriers to inclusion also need attention.
RESUMO
Death anxiety is common in advanced cancer due to heightened mortality salience. We tested terror management theory (TMT) in this population (N = 305) by evaluating the buffering effect of the distal defenses (attachment security, meaning, self-esteem) on the impact of physical impairment (a proxy for mortality salience) on death anxiety. Patients with greater numbers of strong distal defenses reported lower death anxiety than those with no strong defenses or one strong defense. These findings support the relevance of TMT in individuals facing the actual threat of death and the need for further TMT research in such populations.
