By Dr Deanna Gibbs, Research Consultant for Nursing, Midwifery and Allied Health Professionals at Barts Health NHS Trust and Principle Investigator of the research project.
From reports and feedback from parents, we recognised that there was a gap in the support and information provided for families whose child experiences a diagnosis of retinoblastoma and enucleation.
In order to improve services, this research project, funded by the Childhood Eye Cancer Trust, aimed to explore some of the experiences of children and parents who have experienced enucleation, and identify what strategies work to instil confidence and coping.
These experiences have been analysed and loosely grouped into themes.
The importance of specialist support
Parents identified a range of elements they perceived assisted them and their children. These included accessibility of staff to clarify information and seek support as needed; developing relationships with members of the team; and receiving specialist procedural preparation and support for their child.
A family learning to cope
Families spent time adjusting to the ongoing care and follow-up for their child following their enucleation. For many, this was focused on the practical management of their child’s eye with both the initial conformer, and ultimately with prosthesis fitting.
Entry into the world of retinoblastoma
Parents shared experiencing a range of emotional responses – including fear, anxiety, shock, denial, self-blame, and distress. Parents were conscious of the stress that this event placed on them, often needing to make treatment decisions in a quick time frame. The speed of the process of the diagnosis and surgery meant that once the initial medical intervention had passed, they focused on trying to regain a sense of normality for their family.
Parents described concerns about both the practical management of the prosthesis if it came out at school/nursery, and managing the social-emotional response of their child and their peers in relation to the artificial eye. Some parents directly used the information provided by the retinoblastoma team to shape and support their conversations with their child’s teacher/school. Others sought direct contact between the Rb team and the school to ensure adequate transfer of suggestions and resources, or to address emerging concerns.
The importance of preparation and play
Most of the children were too young at the time of their enucleation to recall their experience, and their memories focused on the importance of play programmes and preparation that they received throughout their hospital journey.
Positive reinforcement and hospital support
The children expressed the value of positive reinforcement for adjusting to living with their artificial eye – both from an internal (making their parents feel proud) and external (participating in the ‘wishes programme’) perspective. Having the opportunity to meet other children living with an artificial eye was also highlighted as a positive benefit.
Support and openness at home
Children described how they managed their eye at home. Some families focused purely on the practical issues, such as when the artificial eye needed cleaning, while others talked more openly about the eye in general and feelings surrounding this. Some of the children and their families approached their artificial eye in a light-hearted way, and helped to make this a normal and accepted part of their daily life.
The importance of good school support
All of the children talked about challenges that they faced at school which included concerns about their eye falling out, when to clean it, who to go to if something happens and support from their peer group.
They also spoke about comments from other children – some had a level of resilience and managed these as jokes, while some were more upset and took the comments personally. The children placed importance on knowing who to go to and feeling support at school, especially when they knew there was a plan in place.
Finally, parents also shared how they and their child had adapted to their treatment so far, and challenges they anticipated arising in the future.
We are currently collaborating with parents to identify innovative ways in which we can develop resources and the retinoblastoma service to provide the best possible support for children and their families.
Options to be considered in the future include child-designed, co-written and directed short films describing various stages of the hospital experience (eg hospitalisation, prosthesis fitting); development of an app to enable easily accessible information about living with an artificial eye for children and families; and enhancing our current physical resources (eg eye-care kits, procedural support toys etc) based on feedback and suggestions.
The research team for this project comprised Deanna Gibbs, Tara Shea and Laura Reynolds at Barts Health NHS Trust. The full final report will shortly be available at chect.org.uk/research