The Impact of the Pandemic on CI Services: summary of our CIICA Conversation.
20 October 2021, led by Anita Grover.
Attendees: Robert Mandara, Finland, AnnCharlotte Gyllenram, Sweden, Helen Cullington,UK, Filiz Aslan,Turkey, Darja Pajk, Slovenia, Guita Movallali, Iran/Canada, Siobhan Darian, Wales , Sue Archbold,UK, Brian Lamb, UK, Maria Orellana, Ecuador.
so great to chat with you all… great meeting…see you next time!
Summary of discussion and themes
Anita introduced the conversation with a little about her experience both as a user:
- MASKS, access to services, using new technology, making connections
and as a service provider:
- changing needs, changing circumstances, uncertainty, thinking differently, not replicating what has been done before
- delivering differently, remote and hybrid working, group connections
She posed the questions to start off:
- What has been your experience?
- What have we had to re-think?
- What have we learned as a result?
- What do we need to do now?
Themes to emerge:
Masks and communication
- An issue in engaging with services; some comments that awareness is improving about the need to remove masks when conversing with someone who has hearing loss/is deaf; in Slovenia a law to enable people to use face shields instead; they still interfere with the auditory signal; clear face masks could be an option, but more researches are needed for protection from the viruses.
Growing waiting lists:
- Operations have been stopped in several countries (eg Ecuador, Iran) for a time: or slowed. Management of COVID in hospitals slows services. Reports of increasing waiting lists for both adults and children; eg in the last year the UK implanted half the usual number – see bcig.org.uk for figures. In Sweden, there is a waiting list of 200 adults. Finland believed to be back to normal rates.
Slowing of referrals for children from Newborn Screening
- Reported in UK, Sweden, Turkey: children being implanted later than in the past. Referrals not coming through as before.
Remote delivery and use of online services
- Pros: people have grown more confident in the use of online services; have made new connections through the increased use of online services; cost savings made for services, organisations and individuals (eg travel); services have developed new ways of working – remote programming, upgrades; telepractice for habilitation; services have begun to share more with families and users – trusting them more to manage their own technology; number of members in the online support groups’ are increased in Iran; the technology has improved eg automatic captioning, access to google translate, remote speech to text captioning became widespread; lipreading or speech reading can be more accessible with online platforms; costs come down – more free services; people (including children) can access education with others online – see teacher more easily and set volume to a good level: people have become more aware of the impact of challenges in communication for those with hearing loss , for example when using masks; example of the law in Slovenia that for communicating with people who are hard of hearing, masks should not be worn; bigger interest in CI; staff developing new skills – a plus.
- Also new ways of contacting members of parliament – more accessible online.
- Cons: lack of face to face support both for families and adults; challenges of access to technology – for those who don’t have it at home for financial reasons, for adults without the technology and/or skills, for those with additional difficulties, for those where Wi-Fi is inadequate or Zoom services are not available (for example Iran); the additional cognitive load required (to follow presenters, slides, captions and other participants simultaneously) concerns whether adults and children are doing as well as would be expected; anecdotal evidence suggests that new CI users may not be reaching the expected levels of hearing outcomes as quickly as pre-pandemic, perhaps due to reduced possibilities for social interaction and to learn to hear in different acoustic environments; research in Turkey shows teachers reporting the children are not doing as well; in lockdown, people working at home etc. may not have had the usual stimulation; school education was challenging for some children via online platforms; remote CI mapping could be difficult for some CI users; and face to face interaction from service providers is required by CI users from time to time.
- Comments on the need to think differently – how to make new ways of working accessible to all who need it; how to combine online and face to face: hybrid provision: need to work out who may need more support and how to provide it. Previous services such as support groups may no longer be available.
- Where services stopped, staff salaries may cease causing challenges in starting up again and for the individuals , for example Turkey
Funding of CI and services:
- Discussion of the “Pandemic debt” everywhere which leads to huge challenges for funding of services. Industry sales hit. Discussed the need to renew the Spend2Save arguments and update them and the resources.
- Services relying on charitable giving have also been hit hard in pandemic globally; in the past this often provided crucial extra services for families and adult users.
“ previously perhaps as clinicians we felt like patients couldn’t do things remotely, we were almost making the decision for them….I think we are much better at letting people try to do stuff before coming into the clinic.” (service provider)
“ before the pandemic began I was absolutely afraid of using online tools, ….a meeting like this would have terrified me. …..now it’s just routine.” (user and advocate)
“The pandemic debt…..when will that be paid? We have to be very aggressive concerning that cochlear implant… saying we want health care.” (Family group advocate)
“ As well as keeping up with the cost of implants, we need to keep up with the cost of lifelong care…” (User and Parent advocate)
“It hit really bad here (Ecuador) the cochlear implant surgeries stop…..they hope to start in January…” (user)
“What I see……. is the lack of speech therapy and lack of guidance for CI users….. when speech therapy completely stopped, I already had the tools. I felt confident that I could keep going with my son’s hearing journey….. I was working with mums who were just having their babies implanted. Having a chat with them and I was seeing with my own eyes that they didn’t have the guidance… Ok they were given this piece of equipment, which is a cochlear implant…. But you need more than equipment. ….
So the cochlear implants, they are being given but the information and the tools that people need is unfortunately not getting out as quick now.” (Parent)
“In Iran we had very good experience with online support groups. And the support groups grew so much in the pandemic, it’s amazing that parents, some professionals and many young adults with cochlear implants are talking over and over and solving their problems online. …… 24 hours a day….” (service provider)
“ I think what’s particularly shocking is the worrying trend for smaller referrals for children. Adults you might have predicted.”
“ I think increasingly we see those hybrid solutions, where we…..start thinking differently.” (user/service provider)
“tailoring care is crucial, and we probably haven’t been good at that in the past….” (service provider)
“ how do we maximise the various platforms that are there that can best deliver the outcomes we want to see. And do that in a way that works for both user and service provider.” (user and Service provider)
“ We need a balance of… we need to come back to normal after the pandemic. Not to get rid of telepractice but to have a balance between that and meeting patients in the clinic, do both. “ (family Advocate)
23 October 2021
2 Replies to “The Impact of the Pandemic on CI Services: summary of our CIICA Conversation.”
Comments from INDIA, shared by Ruchika Mittal
As we are aware as with other parts of the world covoid 19 had been put in lockdown in India too by the Indian government and it had hammered Post CI services around the globe as did in India.
Going online was the only option. In India before Covoid -19, teletherapy was more popular in educated recipients or/ in families of recipients. The issues that we faced in particular to India dealing with uneducated and / or poor families were:
1. Convincing the families to start online sessions
2. Internet connectivity – internet speed is slow in various parts of the country. Though in many parts of the country we have good connectivity too.
3. Choosing the platform for online sessions – whats app, google meet, zoom, microsoft team. Many parents are uneducated and also with limited resources. Many couldn’t afford an extra electronic device for therapy sessions. The families had many kids and schools also started online classes.
4. Planning the therapy sessions for them. Markets were closed and finances were an issue. Choosing the material from home to complete the goals.
5.Before we enroll the child for the session one of us will take a brief introductory session with the whole family explaining to them about the process and what we expect them to do. We would regularly hold group meetings with families to motivate them.
5. the advantage of online sessions – families got involved in the therapy sessions, recipient / family got empowered and it also increased the attendance. The progress was also in the ascending graph.
I am presenting a research paper in the 6th world congress of cochlear implants in emerging nations under the aegis of annual conference of cochlear implant group of India 2021 – Flexibility of Telepractice in Post cochlear implant – Lessons Learnt.
Hope my mail would be useful to your association and will give you insight on impact of COVID 19 on Cochlear Implant services in developing nations like India.
I thank you for giving me a platform to share my views.
Receiving an implant in the pandemic – Steve’s experience…
It was awesome to see a blog article about the challenges of having a CI during the pandemic. ,,,,,
I had my CI surgery on Dec. 7, 2020 and I had to go through all the pre-op Covid-19 testing and social distancing per medical field safety protocols. You feel like you have the virus because the nursing and surgical staff avoid you and don’t spend much time seeing or talking to you. You are rushed into surgery and are wheeled out masked with very little staff interaction. My wife is a retired nurse and she was real surprised how the social distancing also stifled the nursing and staff interactions with patients.
I had my CI processor activated on Jan. 7th and the audiologists and staff followed strict Covid-19 social distancing while providing and activating my CI processor. Even when it came for the nurse practitioner to inspect the surgical incision a few weeks after surgery, she would not touch me, I had to pull my mask strap off my ear and pull my ear back so she could stand back and take a quick glance at the incision and tell me it looked good.
The audiologist provided me with the CI processor and help me set up my I-phone to control my Nucleus 7 processor and she had 4 programs quickly loaded into it and told me to take it home and try the four programs and to come back in a month to tell her which program I liked best. All four channels were just noise at different horrible pitches the first month. I was not given any listening exercises or instruction from the audiologist and I decided to try to listen to simple audiobooks that had voice pitches that I felt I could hopeful try to work with. I also had my wife work with me with the vowel and short words info I received from Cochlear America materials. I got very little direction or materials from the CI audiologists the first few months ……. The audiologists tried to keep the mapping session short and brief every month at first and I felt they were not doing a good job at testing and improving the CI processor programs
I commented to the surgeon during my nine month surgical follow-up that I was rather frustrated with the progress I was making …….He said I tested at 60% at nine months and that was good. I disagreed based on feedback from other CI people I had networked with.
As I mentioned, the audiologist kept their social distancing for the first 9 months and they tried to make the appointment visits as brief as possible so they could minimize their exposure time with patients. Since I could not get out much in public with the covid restrictions, I did not have very much social activity with others since my CI except with my wife. I had to try TV with CC and try audiobooks to try to get some daily CI stimuli. I asked for apps to help and I wished the apps were offered sooner.
I also networked with local HLAA members that had CI and we had a few valuable virtual meetings to discuss our CI experiences. Some used talk radio, but they all had a lot more pre pandemic social activities that helped them with their CI learning curves. ……I was told by my small local HLAA CI network group to be patient, practice with audiobooks, radio or TV and have a lot of perseverance. Find your daily quite spot and focus and practice listening with your new CI.
At 10 months, I had a new CI audiologist and I had more testing and better mapping from her. We are also well into the vaccination period and that has helped relax the covid fears a little…. And given more time.
The good news is that I am making a little better progress with my CI over the past two months, but I have to be patient as I experience small hearing improvements each month. More daily mask-less social conversation activity would help, but I know that the pandemic is still an major issue and we need to continue to mask and social distance and avoid crowds. The audiologist mentioned to me that the pandemic social distancing and low levels of social interaction might impact how quickly I adjust to the CI. She is correct and I know that I need to try to do my best with my CI stimuli as we tend with the pandemic.
Any similar experiences?