Life took a different path: Experiences of body, identity and sexuality for adolescents and young adults with a cancer experience

PURPOSE: This study aimed to explore adolescent and young adults with a cancer experience (AYA-CCEs') body, identity and sexuality experiences and their need for hospital-based support during the cancer treatment trajectory, including subsequent outpatient follow-up. METHOD: A qualitative study design with a hermeneutic approach. Twenty semi-structured individual interviews and one semi-structured focus group interview applying autobiography were conducted. The participants were adolescents and young adults (13-29) with completed cancer treatment or in actual treatment. RESULTS: Reflective thematic analysis generated four main themes: (i) bodily changes as reminders of cancer, (ii) falling behind and developing differently from peers, (iii) the impact of cancer treatment on fertility and (iv) the experience of sexuality. Overall, there was a pervasive experience of feeling different from peers. Being restricted or excluded from engaging in activities normally associated with youth affected the development of identity and exploration of their sexuality. CONCLUSIONS: This study provides insights into AYA-CCE' body, identity and sexuality experiences during the cancer trajectory and highlights their need for communication with healthcare professionals. AYA-CCEs experience physical discomfort, affecting their ability to participate in normal youth life and to express or live out their sexual needs. The expected course of youth life has taken a different path due to bodily and psychological changes, making it challenging to engage socially with peers and contributing to a sense of being left behind. Our findings suggest a need for AYA-CCEs to access specialized knowledge in a safe and supportive setting facilitated by healthcare professionals.