"That's All Anyone Needs Really, Support":A Content Analysis of Retinoblastoma Survivors' Psychosocial Support Needs

Retinoblastoma (Rb) is a rare intraocular malignancy that affects one in 23,000 children born in the UK each year. This cancer can impact survivors across their lifetime, with the specific psychosocial challenges affecting this group becoming increasingly understood. Despite this, there is no current evidence-based intervention to support their needs across the lifespan, particularly during the transition from childhood to young adulthood. A retrospective content analysis was conducted using data collected in our previous work, drawing on focus groups with teenagers and interviews with young adults. 32 participants were recruited via the two UK Rb treatment centers and the Childhood Eye Cancer Trust. Key themes included concerns about physical appearance, mental health, relationships, and reproductive issues. Findings highlighted a significant demand for tailored interventions that address these specific areas, emphasizing the importance of accessible psychological support to enhance the quality of life for this unique group. Participants expressed a strong preference for peer support and workshops, indicating that shared experiences can foster resilience and coping strategies. Findings also highlighted the barriers to accessing support, such as feelings of isolation and the perception that others have more severe challenges. Ultimately, the study underscores young peoples' views on the necessity for early intervention, suggesting that support programs should be initiated at a younger age to build essential coping skills before the onset of adolescence.