‘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.
Interactive experience
My interactive installation was designed to immerse an audience in the experience of the Rb journey. The experience tapped into the five senses; to place individuals in the position of a parent during their child’s diagnosis, to a child being treated, and then a young person living beyond Rb.
The first stage aimed to raise awareness of the symptoms of Rb, asking the audience to look at clinical imagery where Rb is present. These images were kindly offered by parents of the children featured and who had consented to these being shared.
Next, the audience heard an audio of a consultant paediatric oncologist talking to parents immediately after diagnosis. This was through headphones so that anyone could opt not to listen to this highly emotional audio.The sense of touch was drawn upon next, with audience members being given the opportunity to place their head into a large, dark box, where there was a torch flashing to give the illusion of having doctors looking into your eyes. This was designed to highlight how much a child will go through in their treatment, particularly with frequent eye examinations. It also poses the question as to how, as a parent, you explain why this is necessary to your child, and how, as a doctor, you make this the least distressing experience possible. The audience were also encouraged to try out an experience of what it is like to live with monocular vision and reduced vision. This was done by putting on simulation glasses and carrying out simple tasks, such as writing, to better appreciate the visual loss experienced by many individuals who have had Rb.
After this, the audience were transported to adolescence, where they walked through a sea of hanging post-it notes, each displaying the experience of a young person after their Rb had been managed. Experiences included bullying, low self-esteem, health anxiety and worry about developing cancer again.
To finish, the audience viewed a short film of young people and parents speaking about how Rb has shaped them and their family, both positively and negatively. It also highlighted the focus of my research, developing a novel psychoeducation intervention that will support young people through the psychological and social challenges associated with living beyond Rb.
At the end, there was an opportunity for the audience to write a ‘hope’ for the future of childhood cancer or to share their own experiences of cancer. These were pinned up to form a montage of their own, creating a space for childhood cancer, which is so often ignored.
Research
My research is heavily influenced by patient and public involvement; individuals with lived experience are the true experts in this field. I wanted to reflect this in my PhD, which was developed in liaison with a core group of parents, young people, and professionals. This concept was led by them and the experiences provided in the installation were shaped by theirs.
The hope of this installation was to raise awareness of RB and of the Childhood Eye Cancer Trust (CHECT), and to encourage greater funding of research into childhood cancers more generally. It also highlighted the journey of life beyond childhood cancer, a time that is all too often forgotten once an individual goes into remission. My research highlights the challenges that young people experience after Rb, and we aim to co-design a psychosocial intervention to support this. To my knowledge, this will be the first Rb-specific psychosocial intervention and will be led by young people themselves, the true experts. A full discussion of my findings will appear in a future issue of Optician.
- Nicola O’Donnell is a second-year doctoral researcher, Epidemiology and Cancer Statistics Group, York University.