CIICA News News

Cochlear Implants and Deafness: A Global Case Study to increase policy awareness and action on an under-resourced health issue.

We are delighted to share with you that a study of the development of CIICA (Cochlear Implant International Community of Action) as an international health network has been published by the International Journal of Audiology (IJA) at https://www.tandfonline.com/doi/full/10.1080/14992027.2023.2231634(Paywall). The paper places the development of CIICA in the context of other health networks and provides some lessons to be learned in how to establish health networks. It also reviews the research with users of CI and other stakeholders which led to CIICA’s establishment, develops some general learning about best practices in advocacy and provides evidence of the early impact of CIICA as a health network.

Many of you have taken part in either the research or our activities and we at CIICA are really grateful for your support, without which the establishment of this growing network in over 60 countries would not have taken place.

The IJA is an internationally respected journal and this will help spread the news of CIICA’s work and impact even more widely.

We would of course like you to promote the paper via the public (paywall) link. With many thanks again for all your support for CIICA, and we look forward to our future developments

Patient advocates in this field are the best conveyors of messages around the impact and severity of not addressing hearing loss and the benefits of taking action. From a public health perspective messaging about access to communication and the right to be able to hear resonates well within a human rights framework and offers an important basis for network development and building coalitions between groups with different circumstances.

Lamb, B, Visiting Professor, University of Derby, UK (Corresponding Author). brian.publicaffairs@gmail.com

Archbold S, CIICA, UK. sue.archbold@outlook.com

Zheng Yen Ng, School of Health and Rehabilitation Sciences, The University of Queensland, Brisbane, Australia. zhengyen.ng@uq.net.au

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CIICA News News

Quality standards for Rehabilitation in Children with CI

Leo De Raeve was one of the leading authors of a recent published article on “Quality Standard for Rehabilitation of Young Deaf Children Receiving Cochlear Implants”.

It is one of the outcomes of the European KA202 Erasmus+ project ‘VOICE’, Ref. No.: 2020-1-RO01-KA202-080059.
The article has been published recently in ‘Medicina’ as part of a Special Issue on ‘Current Trends in Otorhinolaryngology and Head and Neck Pathology’ and is available online:
Website: https://lnkd.in/djBSDVe4
PDF Version: https://lnkd.in/dVyJcxbD

You can also download the Quality Standards for rehabilitation of young deaf children receiving CI’s from the project website:https://lnkd.in/dBuri3qA . At this website you can also download a handbook for therapists, you can follow an e-training course on rehab and there is a lot of information available for parents.

It is essential that we think about the rehabilitation needs of young deaf children with CI. You can also download the CIICA resource about Deaf Children with CI. 01027_CIICA CHILDRENS BRIEFING_4PP

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CIICA AT ESPCI 2023

CIICA was delighted to be mentioned in the opening speech by Prof Emmanuel Mylanus at the European Symposium on Paediatric Cochlear Implantation in Rotterdam, where he thanked Sue Archbold for her inspiration and support. The conference had a great atmosphere- exchanging inspiration after so long!

We met many friends and members at our stand – and attracted more! Many visitors came to learn about our advocacy services -and take our resources…

Stuart McNaughton, Rihab Alikalil, Brian Lamb and Sue led a stimulating session on Sustainable CI Services – why and how do we deliver them? Manu from Brazil shared her challenges in everyday life, and Qais shared what he would like from his CI service – accessibility. Interacting with the delegates was easy with the Chatbox…

Qais talks about what he wants from his CI services

Manu talks about the biggest challenges as a deaf person

Five young people with CI shared their experiences in an inspiring session, led by Rob Beenders, himself a CI user. A young doctor could hear a mother’s heartbeat with a special stethoscope with blue tooth. These young people had a great time socialising too – at the network event!

Brian Lamb shared CIICA’s Spend2Save work in looking at sustainability for CI services –

managing hearing loss well actually saves society money as well as changing lives.

Our adult survey includes responses from young adults, implanted as a child, and Sue shared these too – including the comment:

I’ve always heard through a cochlear, it’s all I know.

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Young deaf people with CI meet up in London to share advocacy stories

The Malala Foundation and Cochlear Foundation brought together five young people with CI from across the globe to London to share their advocacy stories and inspire each other to further action. These young people represented 163 others who had responded to Achieve Anything programme and are examples of the first group of young deaf people growing up with CI. They were inspired by meeting Malala herself and Shelly Chadha of WHO who dialled in from Geneva provided further inspiration.

Leo De Raeve, Chair of CIICA: This group of inspiring young deaf people demonstrates what can be achieved with early intervention, education, and the right, cost-effective, support.

Mahrukh Zaidi, a young doctor from India: This early detection and subsequent support I received helped me thrive at school, providing the opportunity to study medicine.

Qais Khan then led discussion to begin a CIICA consultation about what these young people need to secure their future to be independent and succeed. More to come!

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Deaf Cochlear Implant User advocates at the United Nations for inclusive cities for all

The United Nations Youth Forum gave Qais Khan, a board member of CIICA, the unique opportunity to advocate as a young deaf person with a CI – and to ensure that people listened to what is needed to make cities accessible and sustainable and safe for all. Thanks to Bowen Tang and International Federation of Hard Of Hearing Young People for the opportunity!

From delivering speeches and meeting young leaders from around the world, these images show Qais networking at United Nations Youth Forum.

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WORLD HEARING DAY 3 MARCH!

EAR AND HEARING CARE FOR ALL: LET’S MAKE IT A REALITY
Many resources to help you. https://www.who.int/campaigns/world-hearing-day/2023

#worldhearingday #hearingcare

World Hearing Day 2023 highlights the importance of integrating ear and hearing care within primary care, as an essential component of universal health coverage

Key messages

Ear and hearing problems are among the most common problems encountered in the community.
Over 60% of these can be identified and addressed at the primary level of care.
Integration of ear and hearing care into primary care services is possible through training and capacity building at this level.
Such integration will benefit people and help countries move towards the goal of universal health coverage.

On this day, WHO launched a new training manual – Primary ear and hearing care training manual. The manual will be accompanied with trainer’s handbook and other community resources and needs to be shared widely in primary care services. Down load at https://www.who.int/health-topics/hearing-loss#tab=tab_1

Launch of the World Hearing Forum website

Ahead of World Hearing Day on 3 March, the World Hearing Forum launched a website under the banner ‘Ear and hearing care for all!’. Created by the Forum’s ‘Changemakers group’, the site contains powerful stories of high-profile supporters and everyday “Changemakers” – people from around the world living with hearing loss. We hope their stories will help generate awareness while driving action on hearing loss. Collectively, our voices are stronger. We invite you to visit the website, read the stories and share with others.

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Celebrating INTERNATIONAL CI DAY and CIICA’s Second Birthday!

25 February is International CI Day and CIICA’s Second birthday!

EURO-CIU began International CI Day in 2009 to commemorate the first CI on February 25, 1957 in France. Since 2009, this day has been celebrated all over the world, sponsored by EURO-CIU. Throughout Europe there are more than 500,000 people who have received cochlear implants, 60% are adults and 40% are minors, at the time of implantation.

Now February 25 was also CIICA’s birthday and CIICA’s network is celebrating CI round the globe!

CIICA celebrated with their CIICA LIVE event on 23 February: Delivering Person and Family Centered Care in CI Services. Members from across the globe discussed this vital and neglected topic. Go to https://ciicanet.org/events/ciica-live-delivering-person-and-family-centred-ci-services/ and see the pdfs of the presentations – and the videos with captioning up soon!

A cake for all of us from Georgia!

EURO-CIU have chosen the theme for this year:

Proud to be me. Hear me now.

Members of EURO-CIU made videos to share on this theme – see some of the videos here with great messages:

Moving to Australia: CICADA hosting celebratory picnics!

We in Queensland Australia are celebrating with a picnic at Bribie Island, a day to enjoy chatting and enjoying the company of those that have had the cochlear implant journey, a special day. Other venues include Sydney Harbour…. we look forward to sharing the photos! CICADA Queensland www.cicadaqld.org

More details about the event

and to PINDROP, New Zealand

The Pindrop Foundation is proud to honour some of the exceptional individuals in the cochlear implant community in Aotearoa NZ this International CI Day. These individuals have been unwavering in their efforts to advocate for those in need of this life-changing technology and have brought hope to many. Join us as we celebrate their achievements and contributions to the community https://www.pindrop.org.nz/community/ci-day-2023/

and to Latin America

From Patricia Faletty: “On February 25 we celebrate International CI DAY and also we celebrate CIICA anniversary with all Advocates and Cochlear Implant communities in Latino America. As a Founder member I’m pround of this initiative and share with all you after the 25 some pics for CI recipients that are proud and happy and Toast wishing CIICA A GREAT Anniversary.”

and in Ecuador celebrations too:

and in Spanish for Argentina Celebrations!

and to Czech Republic

Suki are working on a campaign “1+1 is more than 2” about binaural implantation with ENT doctors. There will be several radio and television interviews (between 25.2. – 3.3), leaflets with personal stories of bilaterally implanted adults, press release, and finally, an event (March 3) called “SUKI děkuje” (SUKI thanks to…) where we will award three personalities that supported significantly the wellbeing of CI users. The logo reads Hey can you hear me?

and to Austria

Tobias Fischer tells us that The Austrian group, ÖCIG, are planning an open day in the premises of the medical self-help centre in Vienna. We have received information from the CI manufacturers and our members will be available to answer any questions. Tobias Fischer also has a great lecture at https://earbook.online/pora/ru/en/presentation/oecig/. for the Lehnhardt Foundation. He was the first child to have an implant at the Hannover programme.

and to Mexico

Teresa Scorzi writes:

We started with an image of my daughter Paola at the foot of the Popocatepetl volcano in Mexico #PosOye, with the phrase “sound is the vocabulary of nature. Sound is the vocabulary of nature…..
Congratulations on all your commemorations

https://www.facebook.com/ScorzaICJ?_rdc=1&_rdr https://m.facebook.com/story.phpstory_fbid=pfbid029MzmuCDVPjTNMvvn86AYpJMLFNoPWiq6TV1onrD7P8ky6NrcAJAuFcw1azqpavyyl&id=100064492042086&sfnsn=scwspwa&mibextid=VhDh1V

and to South Africa

Where Jenny Perold sends us information from the team at Tygerberg Hospital who are continually striving to provide optimal outcomes for those living with hearing loss in under-resourced, rural communities.

One Mom has shared the video of her little child who has CP and CI (one) from Rural Eastern Cape – she is trying (with her brother) to imitate the sheep!

and to Uganda, Eddie Mukaaya sends us a message

“The commemoration of the Cochlear Implant International Day 2023 in Uganda which is also the 2^nd CIICA Birthday, gave me a fresh appreciation of how hearing technology can completely change the lives of people living with hearing loss for the better. 12 years ago when we finally made the decision to implant our daughter, we did not know what the results would be but at least we were sure that her life would not be the same if she was given the opportunity to access sounds. Seeing my daughter as the Mistress of Ceremony at such a great event at 16 years gave me great joy

Over the years, Elaine has grown to scale up her potential in the mainstream lifestyle thanks to her Cochlear Implant. Cochlear Implant technology is not a one-time investment but a lifelong journey that transforms the life of CI users on a daily basis. We are yet to find out what this young lady is not capable of with her implants. She has defied the limitations of deafness. To say that Cochlear implants work is an understatement where there are good rehabilitation strategies and maximum family commitment and involvement.”

and to UK

AVUK sends us two videos to celebrate International CI day: Lola and Sam speak for themselves:

Celebrating International CI day with Stuart, The CI Coach

and to USA

HLAA (Hearing Loss Association of America sends us this great blog post – do have a look!

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NEW EHIMA INFORMATION PORTAL: EUROTRAK SURVEYS 2022: EVIDENCE OF LOW AWARENESS OF CI GLOBALLY

The new EHIMA Information Portal http://www.HearingYou.org makes it easier than ever to access their great information and reports on hearing aid use in particular, but some helpful information about awareness of CI.

The 2022 reports from UK, Germany, Italy, Switzerland, New Zealand and France, provide evidence about how little awareness there is even there of cochlear implantation. The MarkeTrak 2022 study for the USA reveals that 4 in 10 of respondents had never heard of CI. It also reveals how few HA owners with severe/profound HL have been informed about CIs by medical professionals.

69% of the population in Germany have never heard of Cochlear Implants.

Only 18% of the HA owners with severe/profound HL have been informed about CIs by a medical professional.

In the UK, 41% of the population haven’t heard of CI

Only 30% of HA owners with severe/profound HL have been informed about CI by medical professional.

EuroTrak is the largest comparative multi-country study on hearing loss and hearing aid usage.

Initiated by EHIMA in 2009, EuroTrak was designed as a means for raising public awareness on key issues of hearing loss and hearing care. It sheds light on hearing loss prevalence as well as on the use of hearing aids and the experience of hard of hearing people with their hearing instruments.

Recent surveys include useful questions on CI awareness, illustrating how little is known about CI even in high income countries.

What are we doing about this? Use this evidence for your advocacy work.

Go to https://www.ehima.com/surveys/

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EUROCIU: XIII SYMPOSIUM WITH OPCI, ONICI

Meeting again after COVID, EUROCIU, OPCI AND ONICI brought together over 200 people in Rotterdam – for an amazing and inspiring conference. A third of the speakers were CI users or parents of child with CI. Accessibility was key with captioning in English, Dutch, German and Spanish; sign language interpretation provided.

Teresa Amat, President of EUROCIU and on the Board of CIICA, welcomed everyone and highlighted the collaboration of EUROCIU and CIICA. Harald Seidler, Vice Chair of CIICA, Teresa and Leo De Raeve, Chair of CIICA and Director of ONICI, and OPCI organisers, Hennie Epping, Peter Helmout and Henk van Rees welcomed us all to this exciting event!

Brian Lamb, Policy Advisor of CIICA, challenged delegates to “stop talking about CI’s as a costly intervention”. Reflecting on the challenge that while globally there are now over one million people with an implant the number should be nearer 20 million if all who could benefit had access. He argued that we should focus on the lost opportunity for the health and social care systems to save money if they do not implant those who could benefit. One of the significant impediments to this goal remains the perceived cost of the intervention. Sharing some of the latest evidence on the cost-benefit of CI’s he demonstrated that the earlier people had access to CI’s the more society would save on other interventions and the greater the benefits would be for individuals’ quality of life. He urged advocates when talking to Governments and health providers to stress the potential savings from investing in hearing care and CI’s not the cost of the intervention.

Download his presentation as pdf

Teresa Amat, President of EUROCIU opens the conference

Brian Lamb of CIICA asked What does (not having) a Cochlear Implant Cost?, Sue Archbold launched the new CIICA Briefing Paper on Cochlear Implants for Deaf Children. (Downloadable in www.ciicanet.org/resources). Anita Grover, AVUK, and member of our Communication Group, inspiring about what is possible.

Brian Lamb – the cost of NOT having a CI

**and great to catch up in real life instead of on the screen!**

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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!

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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