Communicating the retinoblastoma experience

‘Your child has cancer’ are words that no one wants to think about, let alone hear. Annually, around 50 children in UK families will receive a diagnosis of retinoblastoma. Although treatable, many children end up having an eye removed or experience lifelong facial changes.

Having had and being treated for any childhood cancer can lead to emotional challenges. For individuals who have had retinoblastoma (Rb), these are unique and wide-ranging; some may pass on a faulty gene to future children, others are at risk of developing further malignancy, and most are likely to experience some distress.

Once in remission from cancer, individuals and families can be left ‘in limbo’. With this in mind, I developed an installation that aimed to capture both the survivorship journey towards life without retinoblastoma or its treatment, and also any potential impact on wellbeing. Little is known about the psychological challenges experienced by young people with Rb, and my research aims to co-develop a novel intervention informed by their experiences.