Exploring the Psychological Impact of Retinoblastoma: A Path to Bespoke Interventions for Young People  

While significant progress has been made in diagnosing and treating Retinoblastoma (RB), little is known about the long-term psychological impact it has on individuals, particularly young people. Nicola O’Donnell, a health psychologist in the final year of her Ph.D. program in the UK, has taken up the task of developing an evidence base to understand the psychological implications of having RB. With the support of the Childhood Eye Cancer Trust (CHECT), Nicola aims to create a bespoke intervention program that assists young individuals in transitioning from childhood and navigating the profound impact of life after RB.

Despite being one of the most common eye cancers affecting children, there is limited research on the experiences of young people who have had RB. Nicola’s work sheds light on this crucial aspect and emphasizes the urgent need for intervention programs to support individuals affected by RB. In collaboration with experts such as Helen Jenkinson Birmingham Children’s Hospital and Cat Duncan from the Royal London and Great Ormond Street Hospitals, Nicola has embarked on a comprehensive qualitative study involving conversations with 32 teenagers and young adults. These conversations focus on understanding the emotional experiences of teens and young adults with RB, regardless of whether they have unilateral, bilateral, hereditary, or sporadic forms of the condition.

Nicola’s research project also encompasses an in-depth review of existing psychological interventions in the context of childhood cancer survivors. Working closely with Victoria Willard and Daniel Mulroney from St. Jude’s Children’s Research Hospital, as well as Dr Leila Ellis from the University of Bristol, Nicola aims to create a framework of support for individuals and families affected by RB. By analyzing the psychological interventions available and gathering insights from the experiences of 32 young individuals, Nicola hopes to identify effective strategies that can be integrated into her intervention program.

By examining the psychological effects of RB in different age groups and populations, Nicola and her team aim to determine if experiences are similar or vary across contexts. The knowledge gained from these studies will contribute to the development of tailored interventions that address the specific needs of individuals at different stages of life.

 As Nicola’s findings progress, plans are underway to publish a comprehensive article on Nicola’s journey by the end of the year. The publication aims to raise awareness about the psychological impact of childhood cancer, specifically RB, and to advocate for more targeted support for affected families and individuals.

We look forward to watching Nicola’s work progress and hope to share more soon about her published results as she works to help guide the way to providing tailored support for families and young individuals navigating life after an RB diagnosis.