"Meet us where we're at:" Towards engaging and inclusive research with young adults with a lived experience of cancer.

Abstract

Background/objective: Meaningful engagement with young adults (YAs) with a lived experience of cancer is important for conducting impactful research on issues that matter to them, and ensures their voices are central to shaping cancer research outcomes. This preliminary study explored barriers and facilitators to participation in research to identify strategies for making cancer research more inclusive and responsive to the needs of YAs.

Methods: This qualitative study involved twelve YAs (aged 21-43 years at time of interview) with a lived experience of cancer, who participated in a focus group or interview. Participants were recruited via multiple cancer charities/organizations and social media platforms. Data were analyzed using thematic analysis.

Results: Barriers to research participation were Person Specific (health and wellbeing, logistical and practical challenges, knowledge, understanding and confidence) and Systemic (lack of advocacy, social and cultural influences). A multi-pronged approach to engage YAs in cancer research should include framing research to make it more relatable, using accessible language, and showcasing its potential value and impact. Incentivising participation and offering flexible engagement formats, (e.g., online surveys and videos), to meet individuals where they are, can aid participation. Collaboration with trusted organizations, ensuring diverse representation in recruitment materials, and using social media platforms were recognized as effective ways to reach a broader audience and ensure inclusivity.

Conclusions: We provide practical strategies on how to implement these approaches. From a researcher perspective, early consideration of funding allocation (e.g., dedicated person for social media engagement, time of Patient and Public Involvement) is key to support these strategies and enhance engagement.