Summary

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.

Challenge

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.

Objectives

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.

Solution

We initially thought about getting two patients together to share experiences and teach each other about artificial eye care. This concept then developed into a group session to service more patients and provide family-centred care. We felt in the initial stages that it was important to cover the cost of travel as patients live all over the country. To market our group we used our retinoblastoma cartoon characters to create a fun mascot for the group, to get the children excited about coming and make it feel like a real ‘club’. Rules of the club were developed and every child was required to take an oath and learn the secret handshake before decorating their t-shirts with reasons why they are special and watching an artificial eye teaching video. The children then split into groups mixed with teachers and learners to participate and practice at their own pace. To reward the children after the clinic session we needed a fun activity that everyone could participate in and provide a lunch that they looked forward to. Local companies donate the pizza and bowling lanes. At bowling the clinical team catches up with parents on the progress that the child made in the club and discusses any additional support needed. We announced the club on the Children’s Eye Cancer Trust (CHECT) Facebook support page and recruited from patient appointments. We organised for the CHECT support worker to be present at every Eye Club to provide support to parents while children are in with the clinicians and pick up any problems or issues that needed to be relayed to the retinoblastoma team. 

Results

Since starting Eye Club in August 2013, 123 children have attended and there is a waiting list. The impact is felt across clinics and theatre lists with the reduction in GAs and increased compliance in outpatients’ clinic. Parents feel supported and the children benefit from being shown how to remove and insert their eye from another child who has one. The most evident impact of Eye Club is when a learner who had no confidence with his or her eye comes back as a teacher to a subsequent Eye Club and is able to show off his or her new skill and help other children who are anxious and in the situation he or she was once in.

Learnings

Evaluation

We have been running Eye Club since August 2013 (123 patients). Eye Club is evaluated through patient satisfaction questionnaires. These are completed anonymously and used to ensure the group is meeting the needs of the patients. We have never received a negative evaluation form.