Harriet Smith of the Hearing Sciences team at the NIHR Nottingham Biomedical Research Centre

Helping children describe their tinnitus to improve understanding

By Amanda Farah Cox

Tinnitus is known to affect a number of children, both with hearing loss and with normal hearing. However, there is a lack of research and consistency in reports of how children experience tinnitus and the day-to-day problems they face. A new project by Harriet Smith, funded by the British Tinnitus Association, aims to close that gap in understanding.

Smith is currently developing a questionnaire for use with 8 to 16-year-olds to help them self-report the impact of their tinnitus. “It’s looking at impact rather than detecting the tinnitus or assessing the characteristics of the symptom” she says. “Given the multi-dimensional nature of tinnitus, it will cover several domains including sleep, learning, emotional health, taking part in everyday activities, relationships, and hearing.”

The development of the questionnaire is the aim of Smith’s PhD at the University of Nottingham. She is part of the Hearing Sciences team at the NIHR Nottingham Biomedical Research Centre. “The project was developed in response to the recent practice guidance on the assessment and treatment of tinnitus in children released by the British Society of Audiology (BSA). Within that guidance they highlight that there is a need for a questionnaire measure for tinnitus in children to support assessment and treatment approaches.”

There is a misconception that tinnitus is not a problem for children. There are many factors that may contribute to this perception. For example, children won’t necessarily report their tinnitus unless they are asked about it. There is also limited awareness amongst parents, teachers, and even some health professionals, which may affect the chances of children with troublesome tinnitus going on to access the care they need. 

“There was a study conducted in a mixed normal hearing and hearing loss population that suggested that about one in 30 children experienced troublesome tinnitus,” says Smith. “There is a way to go in terms of finding the exact prevalence of tinnitus in children but I think what we can gather is that tinnitus is a problem for a significant number of children and this justifies the need for services. The BSA Tinnitus in Children Practice Guidance advises that in a hearing appointment, children should be routinely asked if they hear noises in their ears or head as part of the clinical history to pick up if tinnitus is there and then to determine from there, is it causing a problem? Adopting this approach would allow for that equity in terms of the care that’s offered to children and the care that’s offered to adults and to allow for the problem to be addressed if it’s there.”

Closing a gap in understanding

The questionnaire will help create consistency in how troublesome tinnitus is measured by asking children directly how they are affected. The data collected can then be used to inform decisions around treatment. Evidence suggests that children aged eight can reliably complete a questionnaire about their health themselves, rather than having to answer questions through their parents.

To develop her questionnaire, Smith interviewed children with tinnitus, both with and without hearing loss, as well as speaking to parents and clinicians. She analyzed these interviews to identify all ways in which children are affected by tinnitus and itemized these problems as candidates to be assessed by the new questionnaire. She further consulted with a panel of experts to design the draft questionnaire and refine the questions included.

From her interviews, Smith noticed that children often had external pressures they were dealing with in addition to their tinnitus and the problems experienced tended to vary according to how old the child was.

“There are usually other pressures going on in children’s lives that are having an effect on their tinnitus as well,” says Smith. “With the younger children, sleep can be a very dominant issue as well as aspects of fear and anxiety around the tinnitus. Younger children will often build a narrative to explain their tinnitus, whether it’s monsters in their head or something else. With the older children, concentration at school and anxieties around exams are more prominent.”

Using My World to explain tinnitus

As part of her interview process, Smith used Ida’s My World tool with children ages eight to 12 to help them articulate specific tinnitus-related problems. Based on methodologies of play therapy and narrative counseling, the board game helps children express their hearing experiences and challenges.  

“I’d usually get them to create their own environment, to create their school classrooms, to pick themselves out from the characters and the key communication partners,” she says. “Then I’d ask for an example of a time when tinnitus has caused a problem and then get them to talk me through what happened, who did they talk to, what was the result of that? That gave me a lot of granularity around the problem that they’d experienced and how that was dealt with and then their feelings around that as well.” 

Using My World helped Smith to get specific information about how and when tinnitus was affecting the children she interviewed.

“Tinnitus isn’t necessarily affecting the children all of the time,” she clarifies. “It’s specific environments and scenarios. It’s much easier for a child to think about a specific scenario that’s actually happened rather than something hypothetical or too broad. The tool was really useful in that way.”

My World is just one interactive method that Smith used to bring out younger children’s experiences with tinnitus. She also incorporated drawing as another low-stress way for children to explain their tinnitus.

“Children might be limited in their vocabulary, language and confidence in explaining what their tinnitus sounds like,” she says. “Some children that are particularly affected by their tinnitus can be quite shy and research interviews are a relatively formal setting. Using these interactive methods really helped the children to open up by allowing them to project their experiences rather than making them feel like they’re put on the spot.”

Smith is preparing to do a larger scale, quantitative validation study of the questionnaire to see if it accurately measures the impact of tinnitus in children. The aim is to have a version of the questionnaire available by the end of the year.