‘That was a major Blindspot for me’: Navigating survivorship after radiotherapy treatment for Hodgkin’s lymphoma in Ireland

PURPOSE: This study aimed to identify the informational needs of Adolescent and Young Adult (AYA) survivors to support self-management of their health during the survivorship period following radiotherapy (RT) for Hodgkin's Lymphoma (HL). METHODS: A qualitative narrative approach was used to explore the experiences of AYAs who had completed RT, either alone or as part of Combined Modality Treatment (CMT). Data were collected through a group discussion and individual interviews. Thematic analysis was conducted to identify key themes. RESULTS: Twelve survivors of AYA HL participated in the study. Thematic analysis identified six key themes surrounding navigating life after treatment highlighting the physical, social, and emotional challenges faced by AYA survivors: (1) Identity transformation and cancer's impact, (2) Long-term recovery and physical effects, (3) Striving for normality and control, (4) Uncertainty and fear of recurrence, (5) Seeking information and support, and (6) Navigating work, education, and relationships. CONCLUSIONS: AYA survivors of HL experience physical and psychosocial challenges during and after treatment. A tailored knowledge resource to support self-management should address not only the medical aspects of survivorship to navigate life post-cancer with confidence and autonomy, but also the emotional, social, and practical challenges unique to AYA survivors. PLAIN LANGUAGE SUMMARY: Life after cancer treatment can be hard to manage. This study spoke with young people who had radiation treatment for Hodgkin lymphoma using interviews and group talks. This study found that survivors described lasting physical effects, emotional worries, and challenges with work, school, and relationships, along with a strong need for clear guidance and support. This matters because better information can help people feel more confident and supported as they move forward after cancer.