BIPOC experiences of (anti-)racist patient engagement in adolescent and young adult oncology research: an electronic Delphi study.

Aims: To characterize Black, Indigenous and People of Color (BIPOC) adolescent and young adult (AYA) cancer patients' experiences of patient engagement in AYA oncology and derive best practices that are co-developed by BIPOC AYAs and oncology professionals. Materials & methods: Following a previous call to action from AYA oncology professionals, a panel of experts composed exclusively of BIPOC AYA cancer patients (n = 32) participated in an electronic Delphi study. Results: Emergent themes described BIPOC AYA cancer patients' direct experiences and consensus opinion on recommendations to advance antiracist patient engagement from BIPOC AYA cancer patients and oncology professionals. Conclusion: The findings reveal high-priority practices across all phases of research and are instructional for advancing health equity.

Disparities in cancer care among sexual and gender minority adolescent and young adult patients: A scoping review.

BACKGROUND: Adolescent and young adult cancer patients (AYAs) who are sexual and gender minorities (SGM) are a rapidly increasing population that experiences unmet cancer-related needs. Despite emerging awareness, little is known about cancer care and outcomes for this vulnerable population. The purpose of this scoping review was to explore current knowledge and gaps in the literature on cancer care and outcomes for AYAs who identify as SGM. METHODS: We reviewed empirical knowledge on SGM AYAs by identifying, describing, and critically appraising the literature to date. We conducted a comprehensive search on OVID MEDLINE, PsycINFO, and CINAHL in February 2022. Additionally, we developed and piloted a conceptual framework for appraising SGM AYA research. RESULTS: A total of 37 articles were included in the final review. Most studies focused exclusively on SGM-related outcomes as the primary aim of the study (81.1%, n = 30), whereas others included some focus on SGM-related outcomes (18.9%, n = 7). The majority of studies included AYAs as part of a broader age range (86.0%, n = 32), and only a few studies examined exclusively AYA samples (14.0%, n = 5). Gaps in scientific evidence on SGM AYAs were seen across the cancer care continuum. CONCLUSION: Numerous gaps in knowledge of cancer care and outcomes exist for SGM AYAs diagnosed with cancer. Future efforts should fill this void with high-quality empirical studies that reveal unknown disparities in care and outcomes and are inclusive of the intersectionality of SGM AYAs with other minoritized experiences, thereby advancing health equity in meaningful ways.

Capturing the financial hardship of cancer in military adolescent and young adult patients: A conceptual framework.

OBJECTIVE: Examine whether an existing conceptual framework for understanding financial hardship following a cancer diagnosis captures experiences among military adolescent and young adult (AYA) patients. METHODOLOGICAL APPROACH: Investigators conducted focus groups and key informant interviews (n = 24) with active-duty military AYA cancer patients, their spouses, cancer care providers, and commanders at a military medical center and military post. FINDINGS: Content analysis and thematic abstraction revealed that military AYA cancer patients' experiences of financial hardship occur within material, psychosocial, and behavioral domains that are situated within the contextual influences of AYA development and military culture. Subsequently, investigators constructed an expanded conceptual framework for understanding the financial hardship of cancer to capture these contexts. CONCLUSION: Differentiating experiences of financial hardship into material, psychosocial, and behavioral domains situated within life course development and occupational culture contexts, may inform development of interventions with aspects of financial hardship most impacted by cancer care.

A Thin Line Between Helpful and Harmful Internet Usage: Embodied Research on Internet Experiences Among Adolescent and Young Adult Cancer Patients.

Purpose: The purpose of this study was to expand upon findings from a prior Delphi study of adolescent and young adults' (AYAs') preferences for cancer resources. Utilizing an embodied approach, this study intended to elucidate a deeper and nuanced understanding of the expressed benefits and risks of engaging in cancer-related online interactions. Methods: Using Gale et al.'s framework method for qualitative, multidisciplinary health research and Thanem and Knights's embodied research methods for the social sciences, an investigative team of embodied researchers (AYA cancer patients turned researchers) conducted semistructured in-depth interviews with AYA cancer patients (n = 10) diagnosed between ages 15 and 39 years. To generate themes, researchers identified commonalities and differences within the qualitative data, and indexed codes according to the agreed analytic framework. Furthermore, by fully engaging with personal reflexivity, bracketing, and analytic memos across data collection and analysis, the investigative team elucidated benefits and risks of embodied research. Results: Findings impart evidence on AYAs' needs for internet-based content at the time of cancer diagnosis, use of the internet to fulfill cancer-related needs, perception of gaps in online cancer resources, and advice to other AYA cancer patients accessing internet-based information and support. Content analysis of interview data on participants' descriptions of personal engagement with the internet revealed beneficial themes of empowerment and harmful themes of fear-inducing consequences. Conclusions: In our rapidly evolving context of postpandemic internet reliance, developers of online cancer content should prioritize and respond to the nuanced vulnerabilities of AYAs. Future research must include socioeconomically disadvantaged participants to better understand practical challenges and promote health equity.

A call to action: Antiracist patient engagement in adolescent and young adult oncology research and advocacy.

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.