Eye Club is a patient-led teaching group supporting paediatric oncology patients who have had one or two eyes removed due to advanced retinoblastoma. The basis of the group is a fun, non-threatening environment with the aim of bringing children and families who have been through a similar experience together. The group is made up of ‘teachers’ and ‘learners’: teachers are children who are confident in removing and inserting their artificial eye, and learners are those who have little to no confidence in any eye-related care. While the children are with the clinical team learning eye care, parents and siblings are treated to tea and coffee with a support worker.
Retinoblastoma (Rb) is a rare cancer, with around 50-60 children diagnosed in the UK every year. It is common that patients may never come into contact with others who have Rb or an artificial eye outside of hospital visits. Survival rate is almost 100% – but living with an artificial eye is something that both parents and children often find the most difficult aspect of their diagnosis. Parents not only have to cope with their child being diagnosed with a life- threatening cancer but also have to very rapidly adjust to the frightening and devastating news of the removal of their child’s eye and the ongoing impact that this has on their lives. So far, all of the focus has been on diagnosis.
To increase patients’ compliance with their artificial eye (cleaning, inserting, removing) and reduce the need for general anaesthetic (GA) to check the socket. To increase the cosmetic appearance of the artificial eye (if child is compliant he or she is able to have a moulded, better-fitting eye). To increase self-esteem, self-confidence and self-worth and to bring together families and reduce parental stress.
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