CIICA conversations: learning from people with CI and families on the living guidelines project

Cullington, Helen, Archbold, Sue, de Raeve, Leo and Lamb, Brian (2023) CIICA conversations: learning from people with CI and families on the living guidelines project. 14th Asia Pacific Symposium on Cochlear Implant and Related Sciences, Coex, Seoul, Korea, Republic of. 08 - 11 Nov 2023.

Abstract

Objectives: there is a huge global gap between the numbers of people who have cochlear implants (CI) and those who need them. CIICA, the Cochlear Implant International Community of Action, was established in 2021 as a network focussed on advocacy for the provision of CI and lifelong services.
CIICA was asked to provide the user and family voice to influence the Living Guidelines project, which is aimed at addressing the significant under-provision of CI for adults. The guidelines will help ensure that those who need CI have a consistent pathway for access and care.

Methods: four CIICA Conversations were held between September and December 2022. CIICA Conversations are one hour long, with a maximum of 20 participants, are not recorded, and are live captioned. The transcripts of the facilitated Conversations were analysed, summarised, and circulated for agreement.

Results: 37 people from 20 countries took part. Some key themes for people with CI and families were:
•CI needs to be part of the lifelong hearing journey
•Family and person-centred care is vital for best outcomes
•Regular mapping and rehabilitation is necessary for progress and often not provided
•Ongoing funding is a major issue, which is often not made clear prior to CI
•Peer groups have a key role prior to and after CI
•Outcome measures need to reflect functioning and changes in everyday life. For adults with CI, impact on quality of life is more important than speech perception.

Conclusion: participants in the Conversations were enthusiastic about the potential of the Living Guidelines to improve CI services and about looking at how they could use the guidelines to improve awareness, access, and provision. They were keen to support their implementation and wanted accessible resources to use in advocacy work.

This record has no associated files available for download.

Contributors

Author: Helen Cullington

Download statistics