Living with treatment-related hearing loss: Experiences of survivors of childhood brain cancer

Children who are treated for brain cancer are at risk for developing hearing loss, because of the disease and the treatments (chemotherapy and radiotherapy) that are used.

We know from research with other groups of children that hearing loss in childhood is linked to problems with: language; school performance; getting on with people (social interactions); emotional difficulties; and quality of life.

Children learn to live with their hearing loss in different ways, supported by family, schools, and healthcare workers. This can help overcome some of the problems linked to hearing loss in childhood. We understand a little about the effect that hearing loss has on children who’ve been treated for a brain tumour – they seem to have the same difficulties as other children with hearing loss. But we don’t really know what it’s like to live with that hearing loss when you’re also dealing with growing up after brain tumour treatment.

This is a really important question because having a brain tumour in childhood can lead to lots of other complications – like problems at school, or poor eyesight. Children and families also have to deal with ‘normal life’ after cancer, and coping with other late effects of treatment. This means that we have to understand what their experiences are like, rather than just relying on what we know from other children with hearing loss.

We will find this out by interviewing up to 20 children and families (parents/carers, siblings) for an hour, about their experiences of living with hearing loss after treatment for brain cancer. We know from other projects that this is a good way of exploring real-life experiences. The results will come from the experiences that children and families share with us.