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

Area of Science:

• Oncology
• Psychology
• Survivorship Research

Background:

• Retinoblastoma (Rb) is a rare childhood eye cancer with lifelong implications for survivors.
• Psychosocial challenges faced by Rb survivors are increasingly recognized but lack evidence-based interventions.
• Support gaps are particularly evident during the critical transition from childhood to young adulthood.

Purpose of the Study:

• To identify the specific psychosocial needs of Retinoblastoma survivors.
• To explore preferred support modalities and barriers to accessing care.
• To inform the development of tailored, lifespan-oriented interventions for Rb survivors.

Main Methods:

• Retrospective content analysis of data from previous focus groups with teenagers and interviews with young adults.
• Recruitment of 32 participants from two UK Rb treatment centers and the Childhood Eye Cancer Trust.
• Thematic analysis of participant experiences concerning physical appearance, mental health, relationships, and reproductive health.

Main Results:

• Key themes identified include concerns about physical appearance, mental health, relationships, and reproductive issues.
• Survivors expressed a strong demand for tailored interventions and accessible psychological support.
• Peer support and workshops were favored, with participants noting barriers like isolation and perceived severity disparities.

Conclusions:

• There is a significant need for evidence-based, psychosocial support interventions for Retinoblastoma survivors across their lifespan.
• Accessible, tailored support, particularly peer-led initiatives, can enhance quality of life and resilience.
• Early intervention and support programs initiated in younger years are crucial for developing coping skills before adolescence.