Understanding and overcoming barriers to living with an artificial eye
Research type
Research Study
Full title
Understanding and overcoming barriers to living with an artificial eye.
IRAS ID
123754
Contact name
Deanna Gibbs
Contact email
Sponsor organisation
Barts Health NHS Trust
Research summary
Retinoblastoma is a rare cancer, with around 40-50 children diagnosed in the UK every year. The survival rate for retinoblastoma is extremely high (currently almost 100%). Treatment is primarily to preserve the life of the child, the eye and the vision. However preservation of their eye and vision is not always possible. Parents have reported that the second most stressful aspect of retinoblastoma treatment is the handling and aftercare of artificial eyes (Norgate & Littleton, 2004).
This study aims to understand the experiences of children and their families following enucleation (removal of the eye) in order to develop best practice guidelines regarding clinical management, and promote innovation in the development of clinical resources to support adaptation to living with an artificial eye. By better understanding the scope of the barriers (physical, mental and emotional) that may be encountered by children and young people and their families, the research team can explore the support services and strategies used by children and their families who recently undergone enucleation in order to address these barriers.
The study will involve conducting interviews with three groups: children over four years of age who have experienced a unilateral enucleation; parents of children who have experienced enucleation; and teachers of children who have experienced enucleation. The information obtained will then be presented to a parent group who will be involved in developing recommendations for changes to service provision that can best support children being treated for retinoblastoma and their families. It is anticipated that the findings of this study will increase our understanding of how to provide the most appropriate and research based strategies so that further emotional distress relating to artifical eye problems is minimised for future families.
REC name
London - Bromley Research Ethics Committee
REC reference
14/LO/0533
Date of REC Opinion
16 May 2014
REC opinion
Further Information Favourable Opinion