This theme included emotions of fear, anxiety and distress from families during severe mucositis episodes. It also included complex emotions of parental guilt around cancer treatment side effects. Families found the pain from mucositis to have a really significant impact, and managing this pain was challenging. Many children and families reported negative experiences of toothbrushing when they had severe mucositis.

Finally, for many families the severity of mucositis was unimagined. Healthcare professionals told us that they found it difficult to describe mucositis to families, and prepare them for it, without increasing their fear. 

This theme included the experiences of families of being prevented from being at home when they had severe mucositis. For most families, this was a negative thing, but some families preferred to be in hospital when their child had severe mucositis. Children and young people described losing their ability to communicate. They described this as “like being chained up”. Many of them told stories of having to use a pen and paper or sign language to communicate with their families and healthcare teams. Children were also removed from their normality in terms of their oral health.

They struggled with changes in their diet and toothbrushing when their mouth was painful.

For some of them, these challenges continued even after the mucositis had stopped.

The impact of mucositis on eating was complicated and was biological, psychological and had social impact (biopsychosocial). Children and young people struggled with pain when eating and lost their ability to eat, chew, and swallow food. As a result, many families struggled with managing nutrition. Most children and young people disliked feeding tubes and tried to avoid these if they could. But for many children, feeding tubes were needed because of their difficulty eating. Socially, children and young people missed the normality of having mealtimes and tasting their food. Parents reported missing their role as being a “feeder” and being able to provide comfort for their children by cooking their favourite meal for example.

When children and young people have severe mucositis, with lots of painful mouth ulcers, this was found to have an effect on their experiences of cancer treatment. It impacted them being able to progress through to the next stage of treatment and increased the complications they experienced. Severe mucositis was also found to place a compounding burden on hospital services. Healthcare professionals described this knock-on effect of severe disease with the need for nutrition, pain-relief, and need for specialist services. All of these things added to the feeling of adding strain to services and families. Finally, families and healthcare professionals told us that they didn’t feel there were any effective options for managing mucositis. Children and young people struggled with mouthwashes and gels. Healthcare professionals wanted treatments to stop mucositis from happening that children cold tolerate.