CROSSSD Study – You Can Help with Vital Research!

logo-CROSSSD (2)

I recently came across an interesting research project, whilst browsing on Twitter. The purpose of the study was to help develop the research of treatments of single-sided deafness (SSD), making it easier and quicker to find out which treatments work best and why.

As someone with SSD, who has been unsuccessful in finding an aid to help overcome the difficulties imposed by this type of hearing loss – namely challenges in localising sounds and understanding speech in noise – I was keen to do whatever I could to help support this research project.

The study is part of a PhD being undertaken by the audiologist and researcher, Roulla Katiri, and is supported by the National Institute for Health Research (NIHR), Nottingham Hearing Biomedical Research Centre (BRC). I wasn’t sure whether I would be able to participate since I am currently living in Spain and the project is based in the UK. So, I sent a message to Roulla to see if there was anything I could do to help. Roulla’s reply was simple and clear – since I have been diagnosed with SSD over 12 months ago and have trialled a hearing aid, I was a perfect candidate to take part in the consensus.

Here’s a little bit more about the study…

The purpose of the study is to develop a common set of ‘outcomes’ to help researchers decide whether a treatment works. In the field of treating SSD, ‘outcomes’ are the things that should be measured when deciding if a hearing aid or an auditory implant is effective.

Examples of ‘outcomes’ are:

  • The ability to localise sounds
  • The impact of SSD on quality of life
  • The ability to hear in noisy places such as restaurants

Different research studies often measure different outcomes, meaning it can be difficult to compare or combine measurements. This makes it hard to identify which treatment works best. If all future studies measure the same common set of ‘outcomes’, research can be moved forward faster.

This is all explained really nicely in this short video (2:19 running time):

The information gathered from this study will help others with SSD; and audiologists, like Roulla, to be able to recommend the best treatment for SSD, when considering the individual requirements of their patients.

My experience completing the study…

As a participant, I was provided with very clear information about the purpose of the study, how to complete it, and how my information would be used.

The survey is comprised of tables of outcome statements like the one shown below:

Snapshot 1

All I had to do was score the outcomes as to how important I felt they were to measure, for SSD treatments according to my own experience. To do this I was required to select a score on a 1 – 9 importance scale, by simply clicking on the relevant part of the table.

Before completing the study I was a little concerned. This is a cause I am very passionate about, and I was worried about making the wrong selections. However, I soon realised that there couldn’t be an incorrect answer – my opinions were all that mattered. I was also slightly worried I might change my mind about some of my scores, after submitting the survey. But, should this be the case, there was going be a second round of the study, where I would have the opportunity to view a summary of the other participants’ scores for each outcome. If I wished to change any of my scores, after reconsidering my initial decision, I would be able to do so in Round Two. I really couldn’t go wrong!

The phrasing of the outcomes was easy to understand and the survey took approximately half an hour to an hour to complete. If I felt particularly strongly about any of the outcomes, I also had the opportunity to add a comment. If I had needed to take a break, there was the option to save my progress and to continue when I had time.

Who can take part?

You can help if you are:

  • A member of the public with severe-profound SSD for over 12 months
  • A healthcare professional with experience of SSD, such as: 
    • Audiologists
    • ENT doctors
    • Funders, relevant charities workers e.g. Ménière’s Society, researchers around the world who work in the field of SSD

If you don’t satisfy any of the above criteria, you can still help by increasing awareness of the CROSSSD study. You can share this blog post, or the relevant information, on your social media platforms. Or, you can simply mention the study to friends or family members who have SSD, or who know someone who does.

It is an international study. The more diverse the applicants, the better the overall representation of people will be – from all walks of life, all ages, and from around the world. If the survey is completed by people from a wide variety of different backgrounds, this will give researchers a better understanding of the key outcomes that will help provide effective treatment for the greatest amount of people.

A final note…

It’s so great that this research is being conducted and I am really happy to be able to help contribute to this study and to give my opinion on what really matters regarding treatment for SSD.

The unique challenges that come with living with SSD are not limited to hearing difficulties. People with SSD may also be living with other related issues such as tinnitus, sound sensitivity and fatigue. Those affected may experience psychological and social issues due to difficulty following conversation, which can make communication at social events exhausting, causing stress, anxiety, and reduced self-esteem. Hearing difficulties and mental health issues can also put stress on professional and personal relationships. And, possibly the most difficult issue is that SSD is invisible; people with SSD may feel alone and isolated in their daily struggles.

Please, take a moment to share this post or the information below. And, if you satisfy the criteria to participate, please take the small amount of time to complete the study. It’s quick. It’s simple. Your help could vastly improve the lives of people with single-sided-deafness.

For more information, visit the following website: www.nottingham.ac.uk/go/CROSSSD

Or contact Roulla to register your interest: roulla.katiri@nottingham.ac.uk

The study will close beginning of November 2019.

Hearing Me – with a Twist!

hearing me

I am so happy to share an updated recording of the BBC World Service Documentary which I was involved in earlier this year.

This version combines the original audio with a twist at the end 😉

Please note, a transcript is also available through the same link – just scroll down the page to download:

BBC World Service – The Documentary, Hearing me

What does life sound like for someone whose hearing has suddenly changed? (This programme contains audio effects that may cause discomfort to people living with hearing conditions. There is a modified version of this programme, with quieter effects, on this page https://bbc.in/2TrInga) What does life sound like for someone whose hearing has suddenly changed?

 

Please take the time to have a little listen and share. 

I hope you enjoy it!

 

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Living with Single-Sided Deafness

I lost the hearing in my left ear through sudden hearing loss in August 2016. There wasn’t a known cause for my hearing loss, I wasn’t feeling ill and I didn’t have an infection. One day the world to the left of me just fell into silence. The hearing loss was profound which means I have no functional hearing in my left ear, and for just over two and a half years I have been living my life with single-sided deafness (SSD).

People with SSD are able to hear through their ‘good’ ear, yet have a profound hearing loss in their other. I am thankful that I am able to hear with my right ear, yet living with SSD comes with its challenges.

Sound localisation is a skill enabled by having two working ears, and so with only one hearing ear, I have no idea where sound is coming from. I might hear some music or a noise, but I don’t know which way to look to see what has produced the sound. Trying to find a mobile phone that is ringing results in me wandering hopelessly around my apartment with my ‘good’ ear leading the way and looking to see if I can spot it, usually ending up back where I started and realising the phone had been next to me all along. Locating a music source is also a challenge. There was one occasion where I was walking in the centre of Madrid, where I live, and I could hear a busker playing the guitar and singing a Bob Marley song. Whilst gazing around to see if I could find the owner of the interesting staccato-type singing I stopped in my tracks with a jump as I almost fell over the person responsible; who was positioned in my path, undetected by my gazing view and lack of directional hearing.

Thinking that all sounds are coming from my right has resulted in some scary instances when crossing roads when I haven’t realised traffic is approaching from my deaf side. It has also resulted in some, in hindsight, comical moments. One day, I was sitting on a seat at the end of a row of seats, on the metro train. I thought that I could hear someone playing the accordion somewhere far down to the right of the train. I was feeling relaxed, and as I tried to focus on the tune that was being played, I saw the woman opposite looking at something next to me. I turned to my left, to where she was looking, only for me to jump up in my seat as I let out a little yelp; startled to see the accordion player was actually standing right next to me, on my deaf side.

My boyfriend automatically walks on my right-hand ‘good’ side where he knows I will hear him. This prevents me from having to continuously turn to face him with my ‘good’ ear, in attempts to catch some snippets of conversation. With friends, who often forget which is my hearing side, or for those who don’t consider it, I place myself on their left. When they inadvertently change sides whilst crossing a road or when they stop to look at something in a shop window, I find myself dancing around them; trying to position myself as quickly as possible back on their left side.

When I’m on my own in everyday places and situations I sometimes feel vulnerable. I worry about crossing the road, and not knowing which direction to move out of the way when I hear the siren of an emergency vehicle. I worry about strangers talking to me, and not being able to hear them, or even worse failing to acknowledge them; if they have addressed me on my deaf side. I unwittingly ignore people to the left of me and often notice a frown on a stranger’s face, presumably because I have failed to respond to them or to move out of their way. I find myself constantly scanning my surroundings; checking people’s faces to see if they show any sign or clue that they are speaking to me.

With single-sided deafness, I find it difficult to hear when there are other noises present. Our brains are responsible for selective listening, which is more challenging without the help of a second ear. In a noisy environment, it is difficult to focus on a single person’s voice. Socialising can be demanding amongst background noise. In restaurants and bars I have learnt to sit in a corner, or with my deaf ear against a wall and my hearing ear facing the person I am speaking to, in order to have some chance at hearing them in conversation. I have learnt that it is only possible to concentrate on listening to one person at a time.

With my single-sided deafness has come tiredness, frustration, loneliness within groups of friends in conversation, and super-sensitivity and hyper-reactivity; meaning I am startled easily by unpredictable or sudden noises. I also have difficulty multitasking and find it hard to perform another task while listening.

Yet, I have found that being able to see some humour and positives, however small, in some of the situations I find myself in, can help me stay positive. For instance, with single-sided deafness, I can block out sound during the night or when having a nap, just by putting my ‘good’ ear to the pillow. I only need to use one earphone when listening to music, and if there is someone I don’t want to listen to, I can make sure they are sitting on my deaf side.

If you or someone you know is also living with SSD, I’d love to hear from you. Please feel free to leave a comment and share some of your experiences.

 


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