Sharing initial data from our survey of adults with CI: thanks to you all!

Adults with CI – what services do you get and what would you like?

Thanks to you all, our survey of adults with CI, in collaboration with York Uni, Toronto, had an amazing 1238 respondents from 40 countries. This work was supported by grant 892-2021-1077 from the Social Sciences Humanities Research Council (SSHRC) of Canada. We have begun sharing the initial data and you can look here. We have much more to do with such rich data and replies!

Sue and Connie introduce the survey

At the HEAL meeting in COMO, June 2022, Professor Connie Mayer, of York Uni, Toronto, and Dr Sue Archbold, Coordinator of CIICA shared the rationale and the first demographic data. The survey asked adults with CI what services they get currently, and what they would like.

You can find the PDF of the presentation here.

The Rationale for the survey :

Current global guidelines (Buchman et al, 2020) do not address the lifelong care necessary for both rehabilitation and technical support to maximise benefits of cochlear implantation

Goal to increase understanding of the requirements of adults who receive CIs from the perspective of the user

No previous investigations focused on the user view

Share knowledge globally with professionals, policy makers, funders, user and advocacy groups to improve practice and provision

Who responded?

1238 respondents agreed to participate in the survey, Representing 40 countries

Highest numbers of respondents from Germany, Australia, Brazil, United States, United Kingdom, France and New Zealand  but good global coverage§

Ranged in age from 18 to 91 years; 10% under 30 years of age; Largest percentage (47%) between the ages of 55 and 75  

Most (94%) reported a bilateral hearing loss ; Only (37%) used two implants ; Of 771 using one CI, 55% use a hearing aid in the other ear

The interesting factors in decision making

Have a look at the initial summary to see more interesting information -and also see what we are now planning. The figures are interesting, but the rich free responses will give us a real insight into what life is like for Adult CI users, and will enable us to provide a powerful report to influence policy and practice.

Thanks to all – and we look forward to more help from you!

“I am very satisfied, however it is not perfect – so I wasn’t sure how to answer.” (from a CI user)

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CIICA NETWORK MEETS AND PRESENTS AT HEAL CONFERENCE, COMO

For the first time for four years, we were able to meet again at this unique conference, on the shores of Lake Como, thanks to Professor Grandori.

The meeting started with Dr Shelly Chadha, of WHO, sharing the World Report on Hearing and the great initiatives by WHO in Ear and Hearing Care. Delegates were delighted to meet face to face again, and it showed us what we had missed in the past couple of years.

Leo De Raeve, our Acting Chair, introduced CIICA to the delegates and Brian Lamb and Sue Archbold shared the achievements of CIICA in its first year, with CI advocacy members in 53 countries.

CIICA presented on the initial results of the adult survey in collaboration with York University, Toronto, with Professor Connie Mayer and Dr Sue Archbold highlighting the early data from the 1283 respondents. See these results in www.ciicanet.org/news.

As is so often the case, captioning wasn’t available until Lidia Best, President of EFHOH, and Founding Member of CIICA, with the help of the excellent AV team, organised it by link from UK for Saturday morning. So useful not only for hard of hearing but for those with English as a second language, and those troubled by the air conditioning!

Lidia with the excellent captioning

A great opportunity for CIICA networks to get together for the first time in person.

The discussions and plans went on until Saturday lunchtime with a great vibe, thanks to Prof Grandori and his team and the enthusiastic delegates!

Meeting up!

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Thanks to all who completed our unique global survey! 1,200 responses from 40 countries!

Cochlear Implants in Deaf and Deafened Adults: A Global Consultation on Lifelong Aftercare

Now closed!

We are fortunate to have received a grant from the Social Sciences and Humanities Research Council, Canada  to carry out a survey of adult Ci users about the services that they receive and would like after implantation. The Principal Investigator is Prof Connie Mayer, York University, Toronto.

This is the first global survey of its kind, and we had a great response. It was in English, German, French, Spanish and Italian.

With many thanks for your help and we look forward to sharing the results!

With your help we can produce the first global report on what services adult users of CI receive at the moment and what they would like! Thank you!
Connie Mayer

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25th February 2022: Our First Anniversary and International CI day! See videos from our network on the impact of the pandemic.

We are proud to be celebrating our first Anniversary  on CI International Day, 25 February 2022 with so many messages and videos from around the world. See below!

With our 77 organizations and 350 individuals  we can make a noise about action for CI – increased access, and lifelong services.  You can access here our media messages, our shared evidence base, logo , banner, messages to share and use.

CIICA’s first year hasn’t been an easy one for us all with  a global pandemic. what have we learnt and what has it taught us to take forward?  How can we ensure that Ear and Hearing Care and CI in particular are funded and services provided globally?  We have the evidence – of effectiveness and cost-effectiveness – see here all the messages on these global videos- by users, families and service providers determined to move CI services forward in spite of the challenges.

Let’s not lose this opportunity to improve CI provision!

Downloads:

Video messages from our global network: sharing our experiences, what have we learned?

Helen Cullington
“Happy first anniversary CIICA and thank you so much for everything that you do to raise awareness of and improve access to cochlear implants around the world, we’re so proud to be working with you.”
Patricia Faletty
“We must think about the position of hearing loss in those who have had COVID”
Anita Grover
“It’s been wonderful to see CIICA grow over the last year and to see the impact it’s had in such a short space of time.”
Catherine Birman
“So many people have told me they have been able to hear over zoom and the phone, thanks to their cochlear implants”
Peter Helmout
“I would like to tell you something about the impact of the Pandemic in the Netherlands… it had its pros and cons”
Katalin Gal
“The pandemic taught me how important creativity and resilience is in both therapy and advocacy”
Eddie Mukaaya
(no sound)
Paige Stringer
“I have been so grateful for my cochlear implant in the pandemic”
Robert Mandara
“The pandemic forced me to confront and overcome my fears of video calls.”
Lidia Best
“One of the most important problems is communication – lack of availability of people’s faces and the possibility to lipread has been incredibly hard.”
Barbara Kelley
“The working together has helped us inform the work we do here in the US.”
Qais Khan
“Everyone around you is wearing a mask – you have no idea who is talking..”
Anita Grover
“We’ve also learned a lot from this experience; we’ve found new ways of working, new ways of communicating…”
Vahishtai Daboo
“The impact on mental health of families has been tremendous especially in India.”
Jenny Perold
“Although the pandemic has been such a tough time in so many ways it has taught us about the wonder of online access”
Leo De Raeve
“I would like to tell you about the experience of COVID on the education of deaf children.”
Darja Pajk
“Perhaps more people will understand the problems of people with hearing loss”
Bowen Tang
“Reset, Relearn and Regroup”

Ingeborg Dhooge
“People are resilient, are creative and look for solutions”
Neelam Vaid
“With the right attitude no challenge is insurmountable”

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Living guidelines project: building consistent standards of care for adults with cochlear implants

Building on the publication; Unilateral Cochlear Implants for Severe, Profound, or Moderate Sloping to Profound Bilateral Sensorineural Hearing Loss (Buchman et al.) this project aims to create living practice guidelines that can be adapted and adopted in country, to optimise the care for adults eligible for CI.

The Global Task Force calls for consistent standard of care guidelines for treating adults with cochlear implants : The task force has three Co-Chairs:

Leo De Raeve: Acting Chair of CIICA (Cochlear Implant International Community of Action) and Director of ONICI (Independent Information and Research Center on Cochlear Implantation). ​

Meredith Holcomb: Director, Hearing Implant Program, University of Miami, Miller School of Medicine, Department of Otolaryngology

Ángel Ramos Macías: Professor, University of Las Palmas. School of Medicine, Department of Otolaryngology – Head and Neck Surgery and Maxillofacial

This initiative to create living practice guidelines for CI is significant because it involves key stakeholders from subject matter experts to CI Users across the globe. They will contribute to and support the effective development and dissemination of a set of accurate, consistent guidelines. These practice guidelines can be adapted and adopted in any country, to optimise the care for adults eligible for CI. Leo De Raeve

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CIICA will be part of the project, led by Leo De Raeve, to ensure the user and family voice is heard.

For more information go to Living Guidelines | Adult Hearing

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Nordic Declaration on Adult Cochlear Implantation

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On World Hearing Day, 2022 we are delighted to share the Nordic Declaration on Adult Cochlear implantation : IMPROVING ACCESS TO COCHLEAR IMPLANTS FOR ADULTS.

Only one in ten have access to life-changing cochlear implantation.

Patient organisations in all Nordic countries want to change this and have therefore joined forces to formulate a declaration to be used to politicians and other key stakeholders.

 This declaration focuses on adults over 18 years with severe to profound hearing loss, of over 65dB7:

  • All adults with severe to profound hearing loss should be eligible to be evaluated for CI’s.
  • Professionals who see those with Hearing Loss must have up to date information and guidelines for when and how to refer patients to CI teams.
  • For adults eligible for CI’s, access to assessment and treatment should be provided without any unnecessary delay.
  • Established indications and guidelines should be matched with adequate resources and funding.
  • Adults with severe to profound hearing loss should get access to optimal hearing care in both ears, including bilateral implants.
  • CI is a lifelong treatment.
    • For the severe to profound hearing-impaired every technology improvement counts. Hence regularly updating to the latest technology is required, with a minimum replacement every five years.
    • Consumables such as batteries, coils, remote controls, swimming kit for CIs, activation of telecoil, BT/streamers and microphone filters should be funded
  • As a long-term goal adult screening should be introduced routinely from the age of 50 years as per the WHO recommendations for adult screening: (WHO, Hearing Screening handbook, 2021).

By accepting and committing to the declaration, the Nordic region will be set to lead the world in providing comprehensive, sensible and fair cochlear implant provision for adults. Cochlear implants are life-changing sound investments, restoring good hearing to most severely and profoundly deaf adults who strive to hear, comments Robert Mandara, VP EURO-CIU, Finland

DOWN LOAD FILE HERE:

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World Hearing Day 3 March 2022

The theme for World Hearing Day 2022 is To listen for life, Listen with Care!

See Information materials for World Hearing Day 2022 (who.int) for information materials.

The World Hearing Day 2022 with the theme “To hear for life, listen with care” will focus on the importance and means of hearing loss prevention through safe listening, with the following key messages:

  • It is possible to have good hearing across the life course through ear and hearing care​
  • Many common causes of hearing loss can be prevented, including hearing loss caused by exposure to loud sounds​
  • ‘Safe listening’ can mitigate the risk of hearing loss associated with recreational sound exposure​
  • WHO calls upon governments, industry partners and civil society to raise awareness for and implement evidence-based standards that promote safe listening

The exciting day will see activities round the world – view them here: https://worldhearingday.org/event-summary-mapped-by-regions/

and also see the launch of

  • Global standard for safe listening entertainment venues​,
  • mSafeListening handbook​, and
  • Media toolkit for journalists.

EURO-CIU in collaboration the European Parliament as well as several other organizations organised a Virtual Lunch Debate for World Hearing Day – a great opportunity to raise awareness and influence opinion.

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Humanitarian support for Ukraine

As Leo De Raeve said on our Anniversary event on Feb 24th 2022 – it was a sad day to have a celebration. We have World Hearing Day 3 March and so many preparations being made. Things changed so quickly – only recently Ukraine achieved new born hearing screening and two CI’s were made available from the state. How things and priorities change.

See here their video made by Ukrainian CI users for EURO-CIU for International CI day: they haven’t been able to share it because of the situation…..https://fb.watch/btNydcPgZf/

Ekaterine Tortladze wrote to her EURO-CIU friends:

A few days ago we celebrated International Cochlear Implant Day, World Hearing Day is approaching. Both days are known in Georgia and more and more organizations celebrate them. This year, on their own initiative, more parents congratulated each other on International Cochlear Implant Day.

This year we were also preparing and planning. Ukraine was also preparing and planning. This year, for the first time, WHO material was prepared in the Ukrainian language. And it is the effort of our member – Ukrainian association for CI Users and Maks Teriushin.

But today I am powerless. For the first time I feel that all this has faded into the background”

How can we help?? Makc Teriushin (the Ukrainian group) has produced a list of practical needs and batteries are the main objective is to get them to the Polish border. Members of EURO-CIU are working out ways to help there – groups in Romania, Slovakia and Poland sharing their activities. Here is Makc who refuses to give up… working with groups across EURO-CIU – and industry  “thank you – we are distributing aid – it has arrived!” This collaboration is bigger than countries, or groups or industry: keeping communication going in this crisis.

President Teresa Amat of EURO-CIU is working hard with VP Robert Mandara to send what is needed; for example batteries to keep communication going for those with hearing loss. Joan Zamora with AICE is working with implant companies on the provision of batteries too and successfully sending them from Spain to Poland for distribution.

See EURO-CIU message here: https://eurociu.eu/euro-ciu-supports-our-ukrainian-friends/





Katarina Klukova, of the Slovakian CI users group, along with Cosmin of the Romanian Association, Asculta Viata Asociatia, for hearing impaired persons, are preparing to send batteries and resources too. We hear that these have now arrived – and more on the way – its really inspiring to see.

resources arrive!

Maria Rekowska – President of Slyszecbezgranic in Poland writes: “Who better to understand the needs of a deaf person than someone who cannot hear? The money raised will go entirely towards the purchase of bulk quantities of batteries for hearing aids and speech processors for hearing implants. The batteries will go to children and adults in Ukraine and Poland. Go to their website if you wish to help http://www.slyszecbezgranic.pl

Similarly, the Lehnhardt Foundation is very busy helping families and children with hearing loss to keep communicating: see what they are doing and how you can help here. Go to their website Lehnhardt Stiftung – Schenken Sie Kindern Gehör (lehnhardt-stiftung.org) They are working with the Society of Parents and Friends of Children with Hearing Disorders in the Ukraine.

In a remarkable united initiative global ENT bodies stand together for Ukraine – as you can see in this link

to ENT and Audiology News.

Lidia Best, herself Polish and President of EFHOH, and who spoke for us last week at CIICA LIVE, says: “EFHOH (European Federation of Hard of Hearing) expressed our solidarity and we are looking for contacts with Ukrainians as well as Polish friends supporting refugees and especially those with hearing loss”.

Ruth Warick, President of the International Federation of Hard of Hearing People (IFHOH) put out the following statement: “The Board of IFHOH categorically abhors war and is greatly concerned for the safety and well-being of our fellow Ukrainians, especially those with hearing disabilities, in this time of crisis. “

Let us know what you are doing and how we can help at this time in the world. Communication is even more important when times are so tough, and those deaf and with hearing loss need to be kept in touch.

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HLAA survey on hearing loss and the pandemic

The Hearing Loss Association of America and Cochlear survey highlights COVID-19’s impact on the community of people with hearing loss in the U.S., including hearing and mental health-related implications.

  • Nearly half of those with hearing loss noticed impacts to other aspects of their health during the pandemic including increased anxiety, isolation and loneliness.
  • 70% are more aware of their hearing loss due to the pandemic; nearly half are more eager to explore hearing loss treatment options.
  • 95% of respondents reported that the use of face coverings impacted their ability to communicate
  • 68% increased their use of technology to communicate
  • 87% of hearing health care providers reported seeing increased signs of loneliness or isolation since the pandemic began.

This is according to a new survey conducted by the Hearing Loss Association of America (HLAA) in partnership with Cochlear Limited. Hearing loss is an invisible disease that affects almost 50 million Americans. The online survey of 1,399 participants sought to find out the pandemic’s impact on those in the hearing loss community, including individuals with hearing loss, their loved ones and their hearing health care professionals.

Have a look at HLAA Cochlear Pandemic Survey – Hearing Loss Association of America

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New figures on educational provision for deaf children in the UK published

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The latest Consortium for Research into Deaf Education (CRIDE) reports into education provision for deaf children in England, Northern Ireland and Wales have now been published by National Deaf Children’s Society (NDCS) and include unique information about those children with cochlear implants which may be useful to you.

The reports can be found online at www.ndcs.org.uk/CRIDE. These reports are a comprehensive and rich source of information on deaf children in the UK education systems including their primary form of communication and take-up of Cochlear Implants. Because the survey has been repeated over time it also provides very useful comparative data. The survey is compiled from specialist teaching services for children with hearing loss and deafness and provides essential data for future planning of services in the UK, which may be helpful for others. 

Looking at the figures for England key points from the research include:

  • 3,907 children known to the services (9% of the adjusted total of all deaf children) have at least one cochlear implant, which is up slightly from 8% in 2019 and 7% in 2017.
  • 2,966 children have a bone conduction device. This is an increase from 2019 when 5% of deaf children were reported to have a bone conduction device. The figure stood at 4% in 2017. Overall there are 6,873 children with a hearing implant known to specialist support services. 

Since 2015, when they last asked about languages used by all deaf children, the proportion using Spoken English has risen slightly from 86% to 88%. The proportion using Spoken English together with signed support has fallen from 8% to 7%.  There are 756 children (2%) using British Sign Language (BSL) as their main mode of communication with 2,667 children using spoken English with signed support. To summarise:

  • 88% deaf children are using Spoken English
  • 7% use Spoken English with Signed Support
  • 2% use BSL

The authors of the report note that ” it can be estimated that 45% of children with severe or profound hearing loss have at least one cochlear implant. If one were to make an assumption that most children with cochlear implants are those with a profound hearing loss, this percentage would rise to 77%. These proportions have risen from 41% and 71% respectively since 2019.”  

It is encouraging to see that there is good access in England for children to Cochlear Implants as a publicly funded service. This does raise the question to what extent schools and settings have enough awareness that children and young people with CI’s need specialist support and advice to be able to fully take advantage of its benefits. We know from other research that this additional support and understanding can be lacking in education systems. As the report points to continuing pressure on the specialist support services and growing caseloads in some areas this suggests the need for further investment in specialist support services to ensure that hearing technology can have more impact on outcomes for children and young people. 

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