Nicola is a qualitative researcher working within the Epidemiology and Cancer Statistics Group at the University of York. She is also a PhD student funded by the Childhood Eye Cancer Charity (CHECT) focusing on developing a psychoeducation intervention for young people who have had Retinoblastoma.
Nicola is also completing her clinical doctorate to enable her to practice as a health psychologist, contributing to oncology care as both researcher and clinician. She has over seven years’ experience working clinically and in research within mental and physical health services, including CAMHS, paediatrics, child health, eating disorders, pain management, and oncology. She has experience working across the lifespan and is passionate about Patient and Public Involvement (PPI) and lived experience co-design.
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.
Wakelin, K., Read, R., O'Donnell, N., Baker, M., Satherley, R-M., Stewart, R., & Jones, C. (accepted). Integrating conversations about disordered eating in children and young people into routine type one diabetes care: a practical guide for paediatric diabetes teams. Practical Diabetes.
Zinser, J., O’Donnell, N., Hale, L., & Jones, C. J. (2022). Multi-family therapy for eating disorders across the lifespan: A systematic review and meta-analysis. European Eating Disorders Review, 30:6, 723-745
O’Donnell N.R, Satherley R-M, John M, Cooke D, Hale LS, Stewart R and Jones CJ (2022). Development and theoretical underpinnings of the PRIORITY Intervention: A parenting intervention to prevent disordered eating in children and young people with type 1 diabetes. Frontiers in Clinical Diabetes and Healthcare. 3:822233.
Peer reviewer - British Journal of Health Psychology
"It's not meant to be for life, but it carries on": a qualitative investigation into the psychosocial needs of teenagers and young adults who have had retinoblastoma’ British Psychosocial Oncology Society Conference 2023
Poster presentation ‘It's not meant to be for life, but it carries on": a qualitative investigation into the psychosocial needs of teenagers and young adults who have had retinoblastoma’ Children’s Cancer and Leukaemia Group Annual Meeting 2023
"It's not meant to be for life, but it carries on": a qualitative investigation into the psychosocial needs of teenagers and young adults who have had retinoblastoma’ Division of Health Psychology 2023 Conference
'Inspiring an Outcome Champion, Building an Outcomes-focused service: learning from the UK and Norway', Child Outcomes Research Consortium, 2017