My research looks into preventing oral mucositis, the painful mouth ulcers that happen when receiving chemotherapy. We know this is a very common side effect of cancer and stem cell transplant treatments that’s extremely debilitating for children and young people, often making things like eating and talking difficult. We’re researching the use of a light treatment, called photobiomodulation, to help stop this from happening. The treatment works by shining a special red light on the cells inside the cheek and around the mouth. This light energy is absorbed into the cells and helps them to heal, reducing the ulcers caused by chemotherapy. It’s a very safe treatment and it can be used by children and young people of all ages, including babies. We hope this will improve quality of life during their cancer treatment.
What we did
We completed interviews with children and young people, their parents, and healthcare professionals to understand what having mucositis was like. We also asked them how they felt about the light treatment.
We recorded and analysed interviews with the help of families in our research involvement group, and then worked with children and young people to co-create a video to explain what mucositis is like, and what to expect from the light treatment.
How this project will help
Despite mucositis being a very common side effect of chemotherapy, there’s been little research into the experiences of families and healthcare services who have used photobiomodulation. The light treatment is recommended in international guidance for managing mucositis, but it’s not widely used in the UK. Our previous research found this was partly because healthcare professionals didn’t know if children would have it done, or how acceptable it was. This project has shown that families and healthcare professionals are very enthusiastic about the treatment, and that children of a wide range of ages were happy to receive it. By sharing families’ thoughts and feelings about the treatment, cancer centres can use this information to support children when receiving it.
Finding out patients and families’ thoughts
Families felt that mucositis removed them from their normality. Children told us that the light treatment would be like ’freedom’ for them, allowing them to eat, sleep and communicate. One of our main findings was the importance of empowering families in light treatment service design. Children and young people liked that they could deliver it for themselves, choose which areas to have treated, and control where the treatment probes went.
Working together
This whole research project has been delivered alongside our Patient and Parent Involvement Group, supported by Candlelighters. Families have been involved from the beginning, telling us that mucositis prevention is an important area to research. A total of 17 families were involved, helping us to design the study, understand results, and co-create the video with children and young people who have used the treatment, and provide feedback on this. The cocreation process ensured that the video was child-focused and understandable.
In addition, children and young people also helped create a video to explain their experiences of research involvement. They tell us that being involved in research makes them feel that their voice is heard, and their opinions are valued.
Developing light treatment services nationally
My PhD research focuses on how best to set up new light treatment services in different children’s cancer centres, to improve access to this treatment. Our video resources are used in other children’s cancer centres across the country to explain mucositis and the light treatment, and even to support the setting up of new light treatment services.
They’re available at www.lchtv.com/photobiomodulation
From Contact magazine issue 105 | Winter 2024
