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 aidto 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 Documentarywhich 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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Learning a New Language with Hearing Loss

Quite surprisingly, I feel that I have developed some skills that ‘hearing people’ may not be as adept at employing in communication as those without full hearing ability; skills that actually help me to comprehend a second language.

I have been living in Madrid for nearly 5 years. During the first two years, I was actively learning Spanish. I was attending evening classes, listening to daily language-learning podcasts on my commute, and was making an effort to converse with Spanish members of staff at work.

My sudden hearing loss happened at the start of my third year in Spain, and since then there has been a marked change in my ability and confidence in learning a second language. Now, over two and a half years following my hearing loss, I still feel like I haven’t addressed this deflated self-confidence.

After I lost the hearing in my left ear, I didn’t return to the evening classes. The sessions were heavily structured around mixing learners together to work in pairs or small groups, requiring them to contribute to the discussion. During each class there would be long periods of time involving many people talking in their groups, which meant overlapping voices, bouncing around the small sparsely furnished classrooms, making hearing and focusing any particular person’s voice very difficult. There were students from many different countries, which would add another obstacle to language learning in a class; with only hearing in one ear comes a difficulty understanding the different intonations and complexities of accents.

As I gradually started to discover mechanisms to manage life with single-sided deafness, I also began to realize that the matter of learning Spanish had been unintentionally suspended during the prior months. And, since returning some focus to my Spanish communication skills, I have realised that learning a language following a hearing loss can present some challenges.

My preferred way of learning Spanish was always through hearing it: by listening to podcasts and eavesdropping on conversations. I continue to be able to recognise Spanish words which I am already familiar with, particularly ones used habitually in conversation. New words, however, pass by quickly in speech, before I have time to think about the way they may be spelt or correctly pronounced. It is now more of a challenge to hear all the phonemes in a word which makes it difficult to identify new words and phrases accurately. Previously I could hear a new word once or twice and be able to spell it. Now, it takes many listens, and sometimes I just can’t hear it clearly.

When learning a new language, it generally takes time to process what has been said in conversation or an instruction, before reacting. Often it has been moments after speaking to someone when I realise what has been said, and by that point, the conversation has perhaps moved on. Similarly, with my hearing loss, it can take a moment to consider spoken information, which I may have only partly grasped, before attempting to decode what has been said. And so, a language learner who also has hearing loss may need extra time for reflection in conversation to enable comprehension.

A pause in dialogue may suggest to a native speaker that they have not been understood when their conversation partner is a language learner. If I ask a Spanish speaker to repeat themselves or if I say ‘pardon’ to signal I haven’t heard what they have said, they often reiterate their words in English, after hearing my accent. They assume it is a matter of misunderstanding due to language ability, rather than a hearing concern. This can be frustrating. I appreciate someone making an effort to speak to me in English with the intention of being helpful, but conversely, it isn’t aiding my language learning or confidence. I know my understanding of spoken Spanish is good, but with the abundance of background noise in public places, there are rarely the ideal listening conditions to facilitate this.

With my hearing loss came a difficulty in gauging the volume of my voice when there are other noises present. If I speak in Spanish and I don’t receive a response, I quickly lose confidence in my words. I usually assume I have pronounced or phrased something incorrectly. But, maybe at times, the issue isn’t my Spanish, rather that I simply speaking too quietly and am not being heard.

Quite surprisingly, I feel that I have developed some skills that ‘hearing people’ may not be as adept at employing in communication as those without full hearing ability; skills that actually help me to comprehend a second language. My hearing loss has prompted me to develop my skills in interpreting tones and in extracting meaning from fragments of dialogue. I am accustomed to filling in gaps left by undetected or misheard words in speech. When someone I know well, such as my boyfriend or my sister, makes a quick comment without first getting my attention, I may hear a collection of tones rather than words. Using my familiarity with their common speech patterns and knowledge of context I can often make a correct assumption regarding what they have said, sometimes without actually hearing a single word. When applied to communication in Spanish, I am able to use this skill to make conjectures, and while this method isn’t conducive to gaining a thorough understanding of a conversation, I am generally able to grasp the essence of a discussion.

I never really appreciated how much I depended on my hearing when learning Spanish. Although it can be challenging and may demand a lot of patience, hearing loss isn’t a barrier to learning a new language. There are many ways to learn a language and there are many resources available, such as phone apps and podcasts with transcripts. I now realise that in order to continue progression in speaking and listening tasks with my hearing loss, I will benefit from focussing more on the written aspects of Spanish. Visual familiarity with new words and sentence structures will help me identify these in dialogue. Perhaps, most importantly, I need to concentrate on building my confidence in continuing to learn a language without full sound.

If you have experience of learning a new language with hearing loss, I’d love you to share your stories and any tips you have. Please feel free to leave a comment.

 

This article was recently featured on The Limping Chicken – the world’s most popular deaf blog! 

 

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