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:
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:
- 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: email@example.com
The study will close beginning of November 2019.
This is excellent, Carly. It shows there is some real action taking place to understand this phenomena. Good luck with your participation.
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Yes, you are right – it’s brilliant news that research is being carried out into treatments for single-sided deafness! Hoping I can help spread the word a little at least 😉
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Thanks for sharing this study. I really hope this research leads to more effective treatment and I’m sorry to hear about what you’re going through.
My fiancé has recently gone through something similar. She had an attack of SSHL in her left ear and she has luckily been left with half hearing in that ear. Unfortunately she had two subsequent attacks of SSHL in the right ear which has rendered her completely deaf. Still no proper diagnosis as the types of hearing loss are so different and all other tests have come back fine. Like you, her world has been flipped upside down and doing anything involving background noise, multiple people talking, or noise over a certain level gets too much for her after a certain time. It breaks my heart that she’s no longer able to do things she enjoys/we enjoy together and we are sort of confined to the four walls of our home for the most part. Like you, her CROS hearing aids aren’t doing much for her and the tinnitus gets so frustrating for her at times, almost unbearable.
As you can imagine it’s putting a real strain on our relationship. I wondered what sort of impact has this had on your relationship with your boyfriend? Do you feel like you’re living separate lives? Have you had to compromise a lot on things? Have you managed to work through what you can?
Thanks very much.
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Thank you for your comment.
I am sorry to hear about your fiance’s hearing loss.
I spoke to my boyfriend about your questions, to get his perspective on things about how we have adapted our lives since my hearing loss.
He reminded me how difficult the first six months to a year were for both of us. Neither of us had any hearing loss/deaf awareness and so we both had to learn together to figure out the best ways to communicate in different environments. We also had to accept that there were certain things that we could no longer do together, such as going to noisy events.
Time helped us a lot. Time to understand how the hearing loss would affect our lives and time to accept this.
Dealing with sound sensitivity can be exhausting. It takes a lot of strength and determination. I found that I was able to manage this by going outside and spending time in a place with background noise (busy streets, cafes etc) for short periods of time every day. It took me a long time until I was able to go to a restaurant. I set myself little goals, and gradually noisy environments became a little easier.
It may be difficult for your fiance to go outside for long periods of time in the beginning. I would recommend going outside as much as possible and planning trips to quieter places such as parks or the countryside.
You mentioned that you are no longer able to do the things you used to enjoy together. You may find that, with time, you are able to do these things once you have both have more understanding about how to manage your finances hearing loss. Try to focus on doing something together that you can still enjoy – this might even be something you have never done before. I found it really helpful to make little plans to do things together that I could look forward to – it helped to keep me positive.
My partner told me that when I first lost my hearing, he felt like he couldn’t go to busy or loud events with other people, because I wasn’t able to enjoy these things anymore. He felt guilty. But now, he knows I’m fine with this. It will take an understanding of both you and your partner to cope with this. Good communication has helped us a lot.
When I first lost my hearing, I found it difficult to explain to others how I was feeling, and all the new challenges I was facing – hence the blog. It will take time for your partner to be able to talk about everything she is feeling. Try to be patient with each other. The more she is able to explain, and the more you are able to understand, the easier it will be to move forward together in dealing with this new ‘normal’.
Please, feel free to recommend my blog to your fiance. She can contact me via my contact page if she would like to email me privately. I am more than happy to email ‘chat’ with her.
I hope things start to get easier for you both.
Best of wishes
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