Our research projects cover the whole cancer journey from learning about how cancer cells grow to improving everyday life for patients and survivors.
Living with treatment-related hearing loss: Experiences of survivors of childhood brain cancer.
- LEAD INVESTIGATOR: Dr Carmen Soto
- INSTITUTION: Great Ormond Street Hospital (GOSH)
- AMOUNT AWARDED: Approx £14,600 (funded by CCLG's Late Effects Project Grant)
Hearing loss is a recognised side effect of some cancer treatments, like chemotherapy and radiotherapy, and children and young people who are treated for brain tumours are at particular risk of developing hearing loss, because of both the disease and the treatments that are used. Treatment-related hearing loss can develop during the treatment or afterwards – sometimes after many years.
Research has shown that hearing loss in childhood is linked to a number of problems including language, school performance, 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, who help them to overcome some of the problems linked to it in childhood.
We understand a little about the effect of hearing loss on children who have been treated for a brain tumour, like how they seem to have the same difficulties as other children with hearing loss. We know hearing problems during childhood can make some things harder – such as developing language skills, managing at school, or making friends. But we don’t really know what it’s like to live with this hearing loss if you’re also dealing with growing up after brain tumour treatment. This is really important because having a brain tumour in childhood can lead to lots of other complications or challenges, like problems at school, or poor eyesight. Children and families also have to deal with managing ‘normal’ life after cancer, and coping with other late effects of treatment.
This research study is hoping to find out what it’s really like by speaking to children, young people and their families about their experiences and the challenges they face in everyday life – and also the solutions that they’ve found. We know that they are experts in finding ways of making everyday life work for them, even when things get really tricky, and we think this is true for those children and young people living with treatment related hearing loss as well.
We want to learn from their experiences so that this expertise can be shared with other families in a similar situation – rather than them having to work everything out themselves. We can also make suggestions for how things could work better, based on real experiences.
Interested in learning more?
If you’re interested in learning more or in taking part in the study, please email carmen.soto@nhs.net for more information (participants have to be
From Contact magazine issue 94 - Spring 2022
