# Understanding the Experiences of Adolescents and Young Adults Diagnosed with Cancer During Higher Education—An Exploratory Interview Study

## TL;DR

This study explores how cancer diagnoses affect young adults in higher education and highlights the need for better support systems to help them continue their studies and enter the workforce.

## Contribution

The study provides new insights into the specific challenges AYAs face in education and work transitions after a cancer diagnosis.

## Key findings

- AYAs value education beyond academic attendance and strive to minimize interruptions.
- They face reduced performance, financial difficulties, and challenges in disclosing their diagnosis.
- AYAs experience a lack of adequate support when navigating healthcare, education, and social systems.

## Abstract

The number of Adolescents and Young Adults (AYAs) living with/after cancer is increasing. Research shows that AYAs often start their careers later, experience negative work-related outcomes, and require occupational support. However, the impact and specific challenges posed by a cancer diagnosis on AYAs enrolled in higher education are poorly understood. This interview study aimed to explore the experiences of AYA students to inform the development of tailored support programs. Our results highlight that education is important for AYAs beyond academic attendance. They also strive to minimize interruptions and delays while coping with reduced performance and age- or context-related challenges, such as financial difficulties or questions around what to disclose about their diagnosis. AYAs experienced a lack of adequate support when navigating healthcare, education, and social systems, suggesting system-level failures and highlighting the need for tailored programs to help AYAs resume their studies and enter the labor market after a cancer diagnosis.

Background/Objectives: Adolescents and young adults (AYAs) with cancer often begin their careers later in life and are at risk of negative work-related outcomes. Research into and tailored support programs for AYAs diagnosed during higher education remain limited. An improved understanding of AYAs’ experiences is essential in guiding the development of age-appropriate support programs. This study explored the impact of cancer and the challenges AYAs face in educational participation and the transition to work. Methods: A qualitative study was conducted with thirteen AYAs diagnosed with cancer during higher education. Participants were interviewed using a semi-structured guide. In collaboration with patient experts as co-researchers, data were analyzed via thematic analysis. Results: Eight analytically derived themes reflected AYA students’ experiences: (1) Meaning and importance of education, (2) Reduced performance, (3) Recovery and expectations, (4) Interruption and delay, (5) Transition to work, (6) Disclosure, (7) Challenges related to the context of students, and (8) Experienced lack of support. The themes were clustered into four overarching thematic categories: Meaningful participation, Impact on performance, Academic progress and career transition, and Challenges in navigation. Conclusions: Our findings provide greater insight into the significance of educational participation for AYAs. AYA students encounter challenges stemming from both diagnosis-related changes in functioning and from contextual factors tied to their roles as students and new starters in the labor market. Navigating the healthcare, education, and social systems is complex and AYAs often lack adequate support when resuming their education or transitioning to work. Tailored support programs in healthcare and educational settings should be developed to help AYAs harness their strong motivation to resume studies, enter the labor market, and achieve their full potential.