The long- term psychosocial impacts and consequences of being diagnosed with Retinoblastoma

Written by Nicole Beddard, Senior Psychology Technician at Teesside University, Centre for Applied Psychology Science, Health and Well-being Theme. Email: 

Dr Grant McGeechan, Senior Lecturer in Psychology at Teesside University, Centre for Applied Psychology Science, Health and Well-being Theme

Dr Jill Taylor, Senior Lecturer in Psychology at Teesside University, Centre for Applied Psychology Science, Health and Well-being Theme

Dr Katherine Swainston, Senior Lecturer in Psychology, Practitioner Health Psychologist at Teesside University, Centre for Applied Psychology Science, Health and Well-being Theme

Following on from researching parents’ experiences of having a child diagnosed with Retinoblastoma (Rb), Nicole, is now embarking on a PhD examining Rb from a patient perspective with a supervisory team led by Dr Kath Swainston here within the Centre for Applied Psychological Sciences at Teesside University. Nicole’s MSc Health Psychology research was published in the European Journal of Cancer Care and was presented at the British Psychological Society Division of Health Psychology 2019 conference.

Rb is a malignant form of cancer that develops within the retina of the eye. It is the most commonly diagnosed tumour in children typically between birth and five years old. Signs and symptoms that may indicate the development of Rb include a red or swollen eye, white glow, iris colour change, squinting, and a deterioration in sight. Treatment options range from localised treatments such as laser therapy and cryotherapy (freeze treatment) to intravitreous chemotherapy and removal of the eye (enucleation).

Biomedical research focusing on clinical outcomes and management, treatment side-effects, and genetics dominate the literature in this area. Parent’s perspectives of having a child diagnosed with Rb, the understandings of and barriers to living with an artificial eye from the perspectives of parents, children and teachers and to a lesser extent, sibling experiences are emerging, but this remains an under-researched area. This PhD project aims to add an original contribution to the research base on the biological, psychological, and social effects of living with and beyond cancer, and specifically the longer-term consequences and management of Rb.

This project will explore the subjective lived experiences of Rb by those in late adolescence and adulthood and identify the impacts, effects, and management of Rb within their everyday lives. Areas of specific concern and decision-making that is a direct result of Rb will be examined. This may include fertility and associated decision-making, genetic testing, ongoing visual concerns, and confidence issues.

The work will include a systematic review of the literature and a working group comprised of adults with Rb, parents who have a child with Rb, and relevant healthcare professionals will be set up to enable co-production to ensure that the project addresses the needs of those living with the consequences of Rb. A qualitative design using a phenomenological approach and semi-structured interviews will be used to explore their lived experience. Thematic analysis will be the method of data analysis and quality measures will be implemented throughout the project.

Support needs and effective strategies and interventions to facilitate support will be reported. We are aiming to uncover times at which an intervention would be of the most use. The work will aim to develop practical guidelines, support material, and resources that can be used by adults in the UK who live with Rb as well as healthcare professionals, families of patients with Rb, and employers. We hope that this could be utilised by further and higher education institutions to inform the development of student educational support plans and will help to inform relevant charities about the support needs of young people and adults affected by Rb and its treatment.

Understanding health and illness, promoting wellbeing and supporting individuals with the psychological and emotional impacts of illness are at the core of health psychology. This PhD not only illustrates the application of this rapidly growing field but also showcases one student’s journey at Teesside University from undergraduate student to MSc Health Psychology and now a PhD…following a passion for improving the lives of individuals with Rb.