‘It sounds like footsteps.’
That’s how one child described the noise in his ears to me, which were particularly scary at night.
While many children experience noises in their ear, aka tinnitus, most children don’t volunteer that they hear noises, perhaps because for them it’s an everyday experience, perhaps they’ve been brushed off when the person they tried to talk to was too busy, or because they’re worried what others might think if they say they’re hearing imaginary noises.
But it’s important to let a child talk about things that bother them. As in the case above, tinnitus can feel quite a sinister sound for anyone to have, let alone a small child, when trying to get to sleep.
It is more widespread than people might think. The Avon study, a longitudinal study of a sample of 11-year-olds, found that one in 30 suffered with tinnitus. That’s roughly one child in every classroom and that’s just among 11-year-olds.
Traditionally, parents of children with tinnitus were told ‘there’s nothing you can do’, when they asked their doctors, which apart from being inaccurate, left clinicians feeling helpless and children and their parents feeling lost and abandoned by the healthcare system.
The thing is, many doctors don’t feel confident about managing children’s tinnitus and there’s the feeling that you create more of a problem by asking children if they have tinnitus but that couldn’t be further from the truth.
It’s much better to get things in the open, address any worries or concerns or even just to explain to those curious about the noises so that they don’t develop worries.
The key is to find ways to encourage children to describe and discuss the condition. If you think they might have tinnitus, just ask them, listen to what they say and how they feel about the noises.
Children have great imaginative skills that we can harness in developing strategies that will be meaningful for them. In this case the child felt the footsteps could also sound like someone dancing or playing the drums which made it much less frightening.
What led me towards the work on these leaflets was when the assessment of tinnitus was identified by the James Lind Alliance Tinnitus Priority Setting Partnership in 2011 as being one of the top ten research uncertainties.
After that, myself and some colleagues set about addressing the deficiency and formed a working group within the BSA (British Society of Audiology).
In 2015, with the support of the BTA (British Tinnitus Association), the BSA Practice Guidance for working with children with tinnitus was published.
Before our practice guidance, there were no national guidance or global guidance available.
However, I realised more was needed because there was no information available for doctors and audiologists to explain the condition to their young patients.
Instead, they were being directed to adult resources which didn’t speak to them in a language they could understand. The other point is that when it comes to a consultation, children’s concerns aren’t necessarily going to be the same as the parents – so while a parent may worry that the child has mental health issues or a brain tumour, the child will want to know what the noises are and how to stop them from being scary, stopping the noises from affecting them at bedtime or in class.
That was how the leaflets came about. Authored by Nic Wray and Sandra Lawrence and illustrated by Kate Smith, they were written to help explain to children as young as five and right up to teens, what tinnitus is and how they can use different ways to manage it. Crucially, these leaflets and workbooks help children to articulate their worries.
While the BTA has been always been incredibly supportive of clinicians in the field, the patient information award makes me really proud of the work we’ve done because it recognised the value and child friendly nature of these resources to help children with tinnitus. There was definitely a sense of accomplishment which boosted our enthusiasm within the BTA to develop more resources. We’ve since had other countries wanting to use our leaflets.
Veronica Kennedy is a consultant audiovestibular physician who works full time in paediatric audiology at Bolton NHS Foundation Trust. She was the lead clinical adviser on the series of information leaflets about tinnitus, which were recognised at last year’s BMA patient information awards.
For more information visit The British Tinnitus Association and the James Lind Alliance