We spoke to Nicola O’Donnell about her CHECT-funded research, ‘Understanding how having Rb affects how you think and feel’:
Retinoblastoma is a rare eye cancer affecting 40-50 UK children a year. Although it is highly curable, this experience can leave some people feeling complex emotions, including worry, anger, or sadness. These feelings can occur when they are least expected, sometimes even many years after their diagnosis and treatment. At the moment there isn’t much targeted support to help teenage and young adult Rb survivors with these feelings, and we want to do something about this. This support needs to be both backed up by scientific evidence and reflective of the wants and needs of real people affected by Rb, which is how my PhD was developed.
To achieve this aim I have spent the last 2.5 years conducting three research studies. These will provide a proposal for the design and testing of the intervention which we will develop, which I will secure funding to do when my PhD ends in September 2024. The first of my PhD studies looked at understanding the experiences of teenagers and young adults who have had Rb. This study is important because it will help us to understand some of the challenges that young people face, and therefore inform what support they want and need.
To make sure that I spoke with a variety of different individuals, I worked with both of the Rb treatment centres in the UK; The Royal London Hospital shared with GOSH and Birmingham Children’s Hospital, as well as CHECT. People eligible to take part were teenagers aged between 13-19 years, and young adults aged 20-29 years, who had been diagnosed with any form of Rb at any stage of their childhood. Overall, 32 young people enrolled in the study: I conducted interviews with 17 young adults between mid and late 2022. In addition, I hosted online focus groups with 15 teenagers during 2022 and early 2023.
Using a type of analysis called ‘reflexive thematic analysis’, experiences were categorised into three themes and eight subthemes.
- Childhood ‘the legacy of trauma’
Subthemes: a) family experiences and survivor guilt, b) memories from treatment, c) the long-lasting impact on personality
- Adolescence ‘when you’re a teenager, you feel like everything is the end of the world’
Subthemes: a) psychological impact, b) identity, c) ‘normal’ for me
- Adulthood ‘it’s not meant to be for life, but it carries on’
Subthemes: a) acceptance, b) doing ‘the work’
Young people shared their experiences of dealing with medical trauma from their childhood, including feelings of survivor guilt, and strong memories from their treatment (even from when they were so young, other people believed they wouldn’t remember). They shared difficulties faced during adolescence, including struggles with identity, and trying to adjust to late effects of their cancer while still seeking a sense of normality. Lastly, as they grew older, self-acceptance involved seeking out support and information to cope with the long-term effects of cancer.
These insights, combined with a review of existing research into cancer wellbeing interventions, form the evidence required to develop a tailored support tool for this group of young people.
Excitingly, I have received a lot of interest in this work and the first academic paper which summarises the findings has now been published in the British Medical Journal. However, not everyone wants to or can read an academic paper, especially if you are very young or if you are living with impaired vision or blindness. Therefore it was important to me to disseminate the findings of the study, and the powerful words of the young people who shared their experiences with me, more widely. For this reason, I recently got a group of Rb survivors together and hired a podcast studio in Birmingham. CHECT’s support worker Sarah Turley and I met with James, Yoadey, Yuri, Tom, Katie, and Kieran (none of whom knew each other previously) to make my research as accessible as possible. Together with some illustrations of young people’s experiences that I had commissioned by illustrator Natalie Harney, the young people recorded the audio for a video summarising the research findings. They also sat down as a group (without Sarah and I) to create a podcast about what it is like to be a young person who had Rb. I think that you’ll agree that the group did an excellent job, and hearing their voices explaining the study as well as sharing their experiences was incredibly powerful. It’s important to say that none of the young people who created the video and podcast were participants in the research; it is incredibly important to keep participants’ identities private, and it is such a privilege to be able to highlight their experiences in order to improve Rb support in the future.
Throughout my PhD and in all of my research moving forward, it is incredibly important to me to work side-by-side with young people with lived experience. As someone who has not had Rb myself, it would be remiss to assume that I know how survivors feel. My stance is always that I hope that by working with individuals who have been through Rb, they can bring their lived experience and combine it with some of my skills as a researcher. By doing this, I hope we capture the wants, needs, and views of the very people who this research affects most, meaning that when we develop our intervention it will be both acceptable and helpful for them.
If you need support in any issues raised by this research, please contact our support team by emailing support@chect.org.uk or calling the team at 020 7377 5578. We want to extend a huge thank you to all the participants who took part in this project.