“How I view the world”: Generating evidence to inform a psychoeducation intervention for young people who have had Retinoblastoma

Retinoblastoma (Rb) is a rare eye cancer typically diagnosed between 0-5 years. Rb can be heritable due to a genetic mutation, or non-heritable, arising from spontaneous mutations. The heritable form carries a higher risk of second cancers and can be passed on to future generations. Survival rates are good in high-income countries but vary globally due to differences in access to medical care and public health resources.

This thesis aimed to understand the experiences of teenage and young adult (TYA) Rb survivors, to generate evidence for a future psychologically informed intervention. Existing research has highlighted that survivors can experience high levels of lifelong distress, yet there are no specific, evidenced-based tools to address the condition’s nuances. This thesis is grounded in qualitative methods, highlighting the value of survivors’ voices and Patient and Public Involvement. Study one was a reflexive thematic analysis that considered the experiences of survivors. Study two, a systematic review, considered interventions for wider childhood cancer survivors, enabling assessment of the components that are evidenced to be beneficial. The third study was a retrospective content analysis of desired Rb intervention content. These studies generate robust evidence to inform the design of a future psychosocial intervention.

This work found that there is a gap in psychological support for this specific group of cancer survivors within existing healthcare systems. It identified psychosocial needs and challenges faced by Rb survivors, their views on any support received, desired interventions content and tools and will be used to inform future interventions. Findings emphasise the necessity for integrated psychosocial support in routine long-term follow-up care, aligning with the NHS long-term plan. This considers the potential for international collaboration and implementation, and application of the findings to other conditions, with the goal of improving psychosocial care for young survivors of cancer and genetic conditions globally.