Retinoblastoma PhD researcher becomes a finalist in Yorks Talks competition
A Childhood Eye Cancer Trust PhD student who is researching into the psycho-social effects of a cancer of childhood called retinoblastoma successfully became a finalist in the University of York’s PhD Spotlight competition on the 11 January.
The Childhood Eye Cancer Trust offer support, raise awareness, and fund research into retinoblastoma, a rare childhood eye cancer that affects around 50 babies and children in the UK every year. Although 98% of children affected by retinoblastoma survive, most will be left with a permanent visual impairment. Around half of the affected children will lose an eye and a few are left completely blind.
PhD researcher Nicola O’Donnell, worked alongside families that have been affected by retinoblastoma to showcase what it is like to experience retinoblastoma through an interactive installation.
The University of York said, “The York Talks event challenges PhD candidates to articulate their research to a non-specialist audience through an interactive exhibition using a variety of mediums. The process of breaking down their research for this kind of interaction enhances both their communication and presentation skills and also forces them to think about what, why, and how they are conducting their research”.
Nicola explained, “Myself and an amazing small group of individuals/parents of children who have had retinoblastoma came up with an interactive installation as part of the competition. This guided the public through the experience of retinoblastoma by asking the audience to look at photos of children prior to diagnosis to explore what symptoms they can see, listen to a children’s cancer doctor talking to parents about next steps after a diagnosis and experience the intensity of people constantly looking in your eyes. We also came up with the ideas of walking through a ‘sea of thoughts’ about what it is like to be a teenager who had retinoblastoma, trying on visual impairment simulation glasses and trying and do an everyday task, watching a video about individual and parents’ experiences living through a retinoblastoma diagnosis, treatment, and beyond and finally by sharing experiences of cancer.”
Nicola explained, “My take home learning was how much more we need to talk about childhood cancer. Understandably, it’s not a topic people like to consider, it’s sad and scary. Unfortunately, it happens to families every day who must live with the sad and scary.
By having uncomfortable conversations, we can raise awareness, create support, and increase crucial funds: unbelievably little funding goes into childhood cancer.
Nicola added, “I’m aware that I am saying this as someone who has not had cancer. The real experts are the individuals and families with lived experience; this is why I am so passionate about co-production in my PhD and all of my clinical work. I would like to express huge thanks to the co-developers of the installation, all of whom have personally been impacted by Rb, as well as my supervisors. I hope that by having these conversations about childhood cancer I can do my little bit to make changes to support them…and possibly me in the future! Cancer can affect any of us.”
Nicola came fourth in the competition after being picked from over a hundred applications. Retinoblastoma typically affects children and babies under the age of 6, but the effects of the cancer diagnosis can potentially last a lifetime, which is why Nicola and the Childhood Eye Cancer Trust are seeking to look into what psycho-social interventions can help those who have received a retinoblastoma diagnosis throughout their life.
To learn more about retinoblastoma and it’s signs and symptoms, visit the CHECT website here: https://chect.org.uk/
