Amidst the concurrent global crises of coronavirus disease 2019 (COVID-19), uprisings against Anti-Black racism and police brutality, as well as anti-Asian racism and violence, the field of medicine found itself simultaneously called upon to respond as essential workers in the public health devastation of COVID-19, and as representatives of healthcare institutions wrought with the impacts of systemic racism. Clinicians, researchers, and advocates in adolescent and young adult (AYA) oncology, must come together in authentic activism to begin the work of creating structural change to advance antiracist approaches to patient engagement in AYA oncology research and advocacy. Critical review of existing practices is needed to ensure that ethical and effective research methods are employed when engaging with racial and ethnic minority AYA patients with cancer, who may be particularly vulnerable and exploited in the current context.
163 Background: Cancer can be a setback for young active-duty military patients, with potential implications for their financial well-being, early career paths, and young families. Despite the assumption of sufficient material support for military patients, cancer and its treatments still result in substantial out-of-pocket expenses and lost-opportunity costs that can lead to financial hardship. Although prior cancer survivorship studies have put forth a material, psychosocial, and behavioral conceptual framework for describing financial hardship following a cancer diagnosis, it is unknown whether this framework adequately depicts the experience of financial hardship among military adolescent and young adult (AYA) patients. The primary aim of the current study was to extend this conceptual model of financial hardship following a cancer diagnosis for application among military AYA patients. Methods: Using Gale and colleagues’ Framework Method for qualitative multi-disciplinary health research, the investigator team conducted focus groups and key informant interviews (n=24) with active-duty AYA cancer patients, cancer care providers, and commanding officers at both a military medical center and a military post in Hawaii. Subsequently, content analysis and thematic abstraction produced results that were sorted to characterize the material, psychosocial, and behavioral domains of financial hardship. Finally, investigators employed health behavioral change theories to construct a conceptual framework. Results: Data analysis revealed that young active-duty military patients’ experiences of financial hardship following a cancer diagnosis occur within material, psychosocial, and behavioral domains that are uniquely situated within the environments of AYA development and military culture. Hence, we elaborated upon an existing conceptual framework of the financial hardship of cancer, by extending it to capture two meso-level contexts that emerged from our findings: (1) life course development and (2) occupational culture. Conclusions: Differentiating individual experiences of financial hardship within the contexts of life course development and occupational culture, may enable the development of interventions that are informed by the aspect of financial hardship most impacted by cancer care for this special population. Future research should further explicate the meso-level contexts in our study, and investigate the associations among and between factors within these social and environmental contexts.
12136 Background: In the thick of the ongoing global crises of the COVID-19 pandemic, uprisings against anti-Black racism and police brutality, and anti-Asian racism and violence, Black, indigenous, and people of color (BIPOC) adolescent and young adult (AYA) cancer patients may be particularly vulnerable and exploited. Whilst embroiled in sociopolitical complexity, BIPOC AYAs are increasingly called upon to contribute as patient advocates in AYA oncology research and advocacy. Researchers, clinicians, and advocates in AYA oncology must dismantle long-standing racism and create meaningful structural change. The purpose of this study is to derive vital best practices for implementing antiracist patient engagement in AYA oncology research and advocacy that are co-developed by BIPOC AYA cancer patients and oncology professionals. Methods: We utilized a modified Delphi technique with a panel of BIPOC AYA cancer patients (n = 32) to build consensus opinions on professional recommendations from a prior study ( Cheung et al., 2021 ), and to generate antiracist best practices in patient engagement. The Delphi study was comprised of three consecutive and iterative survey rounds over the course of 8 months in 2021; participants were BIPOC AYAs diagnosed with cancer between ages 15-36 years. Results: Results detail best practices for the implementation of antiracist patient engagement across all research activities within the Patient-Centered Outcomes Research Institute’s (PCORI) Framework for Patient Engagement. For example, BIPOC AYAs agreed with oncology professionals’ high priority recommendation for including BIPOC AYAs at the highest levels of decision making in research topic selection. As such, a best practice is for researchers to ensure that such representatives not only hold BIPOC AYA identity, but also hold direct experience with the particular oncology diagnosis, issue, or other outcome of interest. Additionally, BIPOC AYAs concurred with oncology professionals’ high priority for “transparency, honesty, and trust” as a core principle for best practices in patient engagement. They further explained that trustworthy relationships are especially important when collaborating with teens and young adults, who are developmentally just coming into their own. When describing successful experiences of inclusion, participants ranked “build collaborative relationships with BIPOC AYA communities and listen to patients not usually heard” and “recruit a diverse range of BIPOC patients and let them give actual input into the study” as the highest priority best practices. Conclusions: Findings from this study are instructional for AYA oncology researchers, clinicians, and advocates to prevent harmful tokenism and implement genuine antiracist inclusion to advance health equity. Future research should investigate best practices within unique clinical settings.
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