Navigating Long-Term Co-Creative Research With Young Adults Diagnosed With Cancer: A Qualitative Study

Patient and public involvement in cancer research is increasingly recognised as essential for developing interventions that are relevant and meaningful to those affected. However, few studies provide detailed accounts of such collaborations or evaluate its impact. This study aimed to evaluate a long-term, co-creative process to refine and improve an internet-delivered intervention focusing on fertility and sexuality following cancer (Fex-Can 2.0).

This qualitative study evaluates the collaboration between patient research partners and researchers involved in a shared working group. A total of 10 young adults (26-39 years), were recruited for via e.g., social media and patient organisations. Seven shared working group meetings were conducted, during which the content of the Fex-Can 2.0 intervention, and components of the planned evaluation, were revised. Data, including information from impact logs, field notes, and individual interviews with patient research partners (n = 4), were analysed using qualitative content analysis.

Three main categories were constructed. The category Collaborative working process captured forms of collaboration in the shared working group, highlighting the importance of transparency and feedback for effective collaboration. The category Group atmosphere described efforts to create a permissive environment, ultimately fostering emotional safety and engagement. Finally, Concrete impact reflects tangible changes to the intervention and future pilot trial, including revisions to language and content, structure of texts, intervention design elements, recruitment and interview guides.

Through structured meeting formats and an iterative process with continuous feedback, the collaboration fostered trust and inclusivity, with patient research partners feeling cared for and able to contribute meaningfully. Their multifaceted input led to concrete improvements to the Fex-Can 2.0. This study contributes to a growing body of knowledge supporting patient and public involvement in intervention development. Future research should continue to explore long-term involvement, strategies for recruiting underrepresented groups, and transparently report impact on intervention design and outcomes.

A group of young adult patient research partners collaborated with researchers to refine and develop version 2.0 of the Fex-Can intervention. Contributions from patient research partners included co-design of the intervention and involvement in reviewing and discussing results from the qualitative content analysis of the present paper.

Trial Registration: ISRCTN18040643. Registered 12th of December 2024.