CIICA News research

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 research

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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CIICA News research

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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CIICA News research

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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