Nicola is a PhD student working with the Martin House Research Centre at the University of York. Her PhD is funded by the Childhood Eye Cancer Charity (CHECT) and focuses on developing a psychoeducation intervention for teenager and young adults who have had Retinoblastoma.
Nicola also works part-time as a research assistant on a Diabetes UK-funded project where she has co-developed a psychoeducation intervention to prevent disordered eating in young people. She has over 5 years’ experience working clinically within children and young people’s services, including CAMHS, paediatrics, child health, and eating disorders.
Developing an evidence-based psychoeducational intervention for teenagers and young adults who have had retinoblastoma
Retinoblastoma (Rb) is a rare cancer of the retina that is diagnosed in approximately 40-50 children in the UK each year. With the majority of cases developing in the first year of a child’s life, treatment involves radiotherapy, chemotherapy, and sometimes surgical removal of the eye. These treatments are largely very effective, resulting in a cure in around 95% of cases. Despite this, treatments can also produce long lasting effects such as reduced vision, facial disfigurement, and secondary cancers. Rb is unique in that around 45% of cases will be inherited through an abnormality in the Rb1 gene. This poses challenges for these individuals, who are more likely to be impacted in both eyes, are at greater risk of developing secondary cancers, and may pass on their faulty gene to any future children.
For all of these reasons it is important to understand the psychological impact of living beyond both heritable and non-heritable Rb. Previous research has indicated that anxieties in this population relate to personal health and survival and impact on family. However little is known about the specific psychological challenges experienced by teenagers and young adults, who are managing the effects of Rb during a time when psychosocial support is crucial. This is in part because of the small number of diagnoses made each year, meaning that there is a lack of knowledge of the particular risks and challenges of teenage and young adult life after Rb.
This research aims to develop a psychologically informed intervention to support teenagers and young adults living beyond Rb. A first study involves a two-phase qualitative process utilising focus groups with teenagers (age 13-19 years) and individual interviews with young adults (age 20-39 years) with a history of Rb. The study aims to explore the experiences of living beyond Rb and views on challenges that they may face as a result. Findings from this study and a subsequent systematic review will be used co-design an acceptable and accessible intervention that addresses the specific needs of this population.