Exploration of the artificial eye process in children with Retinoblastoma: addressing the psychological impact and potential for technological advancement.

Abstract

Background: Retinoblastoma (Rb) is the result of genes becoming mutated and can be hereditary (predominately unilateral and unifocal) or non-hereditary (predominately bilateral and multifocal). 70% of unilateral Rb requires enucleation and thus a lifetime supply of artificial eyes. Aim: To explore the artificial eye process in children with a diagnosis of Rb to address the psychological impact and potential technological improvements that can be made to the current process. Methods: A qualitative approach was used consisting of one study and three components. Firstly, a qualitative questionnaire of artificial eye prosthetists (AEP) perspective of the process. Secondly, an Interpretative Phenomenological Study (IPA) to understand the lived experience of the fitting process of artificial eyes in 13-16 year olds and parents of children with a diagnosis of Rb. Thirdly, a transfer of knowledge between the equipment and tools used in the assessment stage by AEP’s and maxillofacial prosthetists (MP). Findings: Component 1 highlighted the distress of the process experienced by the child patient and their parents as well as the role of parents and the AEP which can act as a barrier and facilitator to the process. Component 2 revealed a potential link between the way artificial eyes are fitted and the psychological wellbeing of the patient and their parents. Component 3 suggested that the tools and equipment used by MP’s have the potential to be utilised in the artificial eye process. Conclusion: This thesis demonstrates an original and significant contribution to knowledge in exploring the psychological impact of the artificial eye process in children with a diagnosis of Rb and the continual need to investigate the capabilities of technology for its potential incorporation into the process. The common theme running throughout this thesis was that of an intrinsic link between human and technological factors in creating an effective service. The findings contribute to both the Rb and ophthalmology literature: highlighting the needs and requirements for the progression of artificial eye services and the treatment and care of children with a diagnosis of Rb.