Research about teenagers with CI

[R2D2]

I found this the other day (I'm a research study junkie) and I thought the parents would be especially interested to read this. It was done by the National Deaf Childrens Society in the UK, which is a well thought of organisation there. 29 teenagers were interviewed and they were implanted as children. It contains some of their feedback, which I think would be very helpful for those parents starting out so that they can be aware of difficulties etc.

On a positive note, none of the teenagers were angry with their parents for implanting them as children. It's in PDF format so you will need Acrobat to read it.

http://www.ndcs.org.uk/document.rm?id=2302

 

[rick48]

I found this the other day (I'm a research study junkie) and I thought the parents would be especially interested to read this. It was done by the National Deaf Childrens Society in the UK, which is a well thought of organisation there. 29 teenagers were interviewed and they were implanted as children. It contains some of their feedback, which I think would be very helpful for those parents starting out so that they can be aware of difficulties etc.

On a positive note, none of the teenagers were angry with their parents for implanting them as children. It's in PDF format so you will need Acrobat to read it.

http://www.ndcs.org.uk/document.rm?id=2302

R2D2,

Great find! This is a must read for any parent considering the implant for their child. It is also extrememly representative of my experiences with the ci teens that I know. When you read the comments of these teens, one sees the tremendous impact it has had upon their lives and the respect they have for their parents. I thought the line in there that what was important to them was to be able to communicate and not the method of communication pretty much summed up their approach to life!

Once again, thanks for sharing it with us.
Rick

 

[flip]

National Deaf Childrens Society(should be "National Parents of Deaf Childrens Society") did this one cooperation and with resources raised by Ear Foundation in UK. It's a "national UK charity to support and to provide activities, courses and resources for deaf children, young people and adults with cochlear implants, their families and supporting professionals."

Too often papers praised by pro-CI folks are labelled with "research", while no higher learning centres have been involved, and money are raised from CI/oralists organizations. I am happy the ASL society don't have to go this low, and can do a lot of scientific research favoring sign language.

Nothing new here really, just another advertisement brochure, let's move on.

 

[Drew's Dad]

National Deaf Childrens Society(should be "National Parents of Deaf Childrens Society") did this one cooperation and with resources raised by Ear Foundation in UK. It's a "national UK charity to support and to provide activities, courses and resources for deaf children, young people and adults with cochlear implants, their families and supporting professionals."

Too often papers praised by pro-CI folks are labelled with "research", while no higher learning centres have been involved, and money are raised from CI/oralists organizations. I am happy the ASL society don't have to go this low, and can do a lot of scientific research favoring sign language.

Nothing new here really, just another advertisement brochure, let's move on.

I don't consider providing people information on how CI kids feel about their implants "low".

 

[ismi]

Too often papers praised by pro-CI folks are labelled with "research", while no higher learning centres have been involved, and money are raised from CI/oralists organizations. I am happy the ASL society don't have to go this low, and can do a lot of scientific research favoring sign language.

To be fair, most of the research into ASL comes out of Gallaudet - which, you may note, is hugely involved in promoting the use of ASL. That alone doesn't make the research illegitimate; these topics are niche (and polarized) enough that any research done will be funded by people who have an interest in the subject.

All that means is that the researchers have to be very conscientious about publishing not only their results, but their methods and raw data.

 

[flip]

To be fair, most of the research into ASL comes out of Gallaudet - which, you may note, is hugely involved in promoting the use of ASL. That alone doesn't make the research illegitimate; these topics are niche (and polarized) enough that any research done will be funded by people who have an interest in the subject.

All that means is that the researchers have to be very conscientious about publishing not only their results, but their methods and raw data.

Just want to add that Gallaudet is involved in speech, and for example, cued speech comes from Gallaudet. Gallaudet also have many students with CI, and professonials in the pathological part of hearing loss. You can experience pure speech, SEE, PSE and ASL at Gallaudet. There are even some who thinks Gallaudet is using too much resources on speech and CI/HA.

We also have a lot of research in foreign sign languages and deaf education in other universities, and they are seldom funded by deaf organizations, they simply don't have money to do so. For example in United Kingdoms, Germany and Scandinavia.

Papers should only be labeled research when it's done like you said. The paper in this thread is labelled "research", and gives an impression it's describing methods, and raw data, while it really not is. It's far from first time I see "research" coming from CI organizations, and parents should be very sceptical to this kind of advertisements.

I agree it's not a "low" thing when kids tell their CI are great, but it is a low thing to present this as research. I can't help it, but it almost looks like a fraud. It's also an interesting question why they are doing this.

 

[dreama]

I agree with Flip.

I had a friend who had a coclear implant done on her. Actually I knew a few people from the deafblind community that have had them but I've only actually known 2 people before and AFTER their coclear implant. One of them was a success. She seemed happy with it although there was nothing she could do that she couldn't do before. It didn't make her any more independant or happier then she was before. Sadly she died from the drugs she had been given for her Arthritis.

The other girl I knew before was very laid back when I knew her at college. Her hearing aid was broken at the time but she didn't seem to be bothered by the fact. When I next met her after her coclear implant she seemed a differant person. She was a little neurotic. Complaining a lot about all the noises she was hearing that were bothering her. She still prefered manual communication. To me it seemed the worst of both worlds.

I find it very suspecicious if everyone is supposed to be happy with their implant as this doesn't seem to fit with the reality as I see it.

 

[rick48]

Just want to add that Gallaudet is involved in speech, and for example, cued speech comes from Gallaudet. Gallaudet also have many students with CI, and professonials in the pathological part of hearing loss. You can experience pure speech, SEE, PSE and ASL at Gallaudet. There are even some who thinks Gallaudet is using too much resources on speech and CI/HA.

We also have a lot of research in foreign sign languages and deaf education in other universities, and they are seldom funded by deaf organizations, they simply don't have money to do so. For example in United Kingdoms, Germany and Scandinavia.

Papers should only be labeled research when it's done like you said. The paper in this thread is labelled "research", and gives an impression it's describing methods, and raw data, while it really not is. It's far from first time I see "research" coming from CI organizations, and parents should be very sceptical to this kind of advertisements.

I agree it's not a "low" thing when kids tell their CI are great, but it is a low thing to present this as research. I can't help it, but it almost looks like a fraud. It's also an interesting question why they are doing this.

Why are they doing this?

Perhaps to answer some of the common questions that parents investigating the ci for their children frequently ask and want to know. Perhaps to also dispel some of the common myths and misinformation frequently spread about cis. Perhaps to publish the results of their research so that others can benefit from it.

They have a number listed, why not call them and ask them that question?

I do not discount something merely because it comes from Galluadet but while there may be some ci users at Galluadet and it is "involved" in speech, its primary focus has been and is the promotion of ASL. Perhaps a healthy dose of skepticism should be applied to their "research" as well.
Rick

 

[R2D2]

National Deaf Childrens Society(should be "National Parents of Deaf Childrens Society") did this one cooperation and with resources raised by Ear Foundation in UK. It's a "national UK charity to support and to provide activities, courses and resources for deaf children, young people and adults with cochlear implants, their families and supporting professionals."

Too often papers praised by pro-CI folks are labelled with "research", while no higher learning centres have been involved, and money are raised from CI/oralists organizations. I am happy the ASL society don't have to go this low, and can do a lot of scientific research favoring sign language.

Nothing new here really, just another advertisement brochure, let's move on.

The NDCS is a neutral organisation - we used to receive their magazines when I was a child in the UK and effort was made to represent all deaf children. If you look at their website you will notice that they provide articles on learning how to sign.

While I appreciate that you would rather that the NDCS collaborated with a more neutral organisation, I think that if the methodology is sound then there shouldn't be an issue. As I understand it, the research is being prepared for publication in a peer reviewed journal and usually the methodology is examined before publication is undertaken. I would tend to agree that as the sample size was quite small, that further research needs to be conducted into the issue to see if the hypothesis continues to stand.

There is very little research on the views of teenagers currently, so when this one came up I thought it would be of interest to some people here. It's interesting that many of the respondents know how to sign and identify themselves as "deaf". Surely those are positive findings?

 

[shel90]

Why are they doing this?

Perhaps to answer some of the common questions that parents investigating the ci for their children frequently ask and want to know. Perhaps to also dispel some of the common myths and misinformation frequently spread about cis. Perhaps to publish the results of their research so that others can benefit from it.

They have a number listed, why not call them and ask them that question?

I do not discount something merely because it comes from Galluadet but while there may be some ci users at Galluadet and it is "involved" in speech, its primary focus has been and is the promotion of ASL. Perhaps a healthy dose of skepticism should be applied to their "research" as well.
Rick

There shud be a balance between ASL supported and speech supported research.

I will have to read this research when I get home.

 

[flip]

Why are they doing this?

Perhaps to answer some of the common questions that parents investigating the ci for their children frequently ask and want to know. Perhaps to also dispel some of the common myths and misinformation frequently spread about cis. Perhaps to publish the results of their research so that others can benefit from it.

They have a number listed, why not call them and ask them that question?

I do not discount something merely because it comes from Galluadet but while there may be some ci users at Galluadet and it is "involved" in speech, its primary focus has been and is the promotion of ASL. Perhaps a healthy dose of skepticism should be applied to their "research" as well.
Rick

You seems to be a bit unclear why they are doing this, too. That's good. That is why I think it is an interesting question why they are doing this. Asking this question, makes it easier for parents to understand the problems with this kind of information. If someone have enough curiousity actually call, it could be interesting if the reply was posted here.

I am not sure what you mean with "research", but this paper that you think is so "must read", is in it's current state, an advertisment brochure, not some valid scientific research. Please stop using the word "research", until you understand what it means.

I do not know why you say that Gallaudet only is "involved" with speech. For example, Gallaudet have:

31 faculty in Audiology
5 faculty at Cochlear Implant Center

compared to

10 faculty in ASL/Deaf Studies

Yes, more in audiology than ASL/deaf studies

Gallaudet also have clinical services like audiology and speech at the Clerc Centre.

Aren't we just making up things here, Rick?

 

[flip]

The NDCS is a neutral organisation - we used to receive their magazines when I was a child in the UK and effort was made to represent all deaf children. If you look at their website you will notice that they provide articles on learning how to sign.

While I appreciate that you would rather that the NDCS collaborated with a more neutral organisation, I think that if the methodology is sound then there shouldn't be an issue. As I understand it, the research is being prepared for publication in a peer reviewed journal and usually the methodology is examined before publication is undertaken. I would tend to agree that as the sample size was quite small, that further research needs to be conducted into the issue to see if the hypothesis continues to stand.

There is very little research on the views of teenagers currently, so when this one came up I thought it would be of interest to some people here. It's interesting that many of the respondents know howto sign and identify themselves as "deaf". Surely those are positive findings?

I agree with much of what you say, and thank you for sharing this website! Allways interesting to read about what is going on other places.

I find various and different statements on identifying and language use in this paper(none about sign language). But it's great to see deaf kids portraited in a happy mood Worrying about deafness is not the way to go, and that's a positive thing here.

 

[rick48]

You seems to be a bit unclear why they are doing this, too.

Aren't we just making up things here, Rick?

No, I am very clear as to why they published the results of their research: to share it with others so maybe it may be of some assistance to them. I am not going to argue Galluadet's mission, if you think it is primarily the development of oral language and the use of cochlear implants based on number of faculty, fine that is your opinion and you are entitled to it.

This thread was started to share with us the published results of research showing how teenagers with cis felt about them. It is helpful, especially to parents, who may be making this ci decision for their child. Is it the only research they should rely upon, of course not but it is infinitely better then unsubstantiated opinions repeated by many.

If you want to discuss the research fine but I am not going to help move this thread away from its intended topic.

It is great to read positive reports about any teenagers who are happy with themselves and the decisions their parents made for them. That in this case happens to be about how they feel about their cis, makes it even more relevent for this forum.
Rick

 

[Drew's Dad]

You seems to be a bit unclear why they are doing this, too. That's good. That is why I think it is an interesting question why they are doing this. Asking this question, makes it easier for parents to understand the problems with this kind of information. If someone have enough curiousity actually call, it could be interesting if the reply was posted here.

I am not sure what you mean with "research", but this paper that you think is so "must read", is in it's current state, an advertisment brochure, not some valid scientific research. Please stop using the word "research", until you understand what it means.

I do not know why you say that Gallaudet only is "involved" with speech. For example, Gallaudet have:

31 faculty in Audiology
5 faculty at Cochlear Implant Center

compared to

10 faculty in ASL/Deaf Studies

Yes, more in audiology than ASL/deaf studies

Gallaudet also have clinical services like audiology and speech at the Clerc Centre.

Aren't we just making up things here, Rick?

I don't detect Rick being "unclear" on anything, but I do detect sarcasm on his part with his "perhaps" "questions".

Look up the definition of research, and then perhaps you'll understand that the word is used to refer to both scientific and non-scientific types of gathered information [was it really necessary to get rude with Rick?]. This booklet is clearly not claiming it is scientific research.

It's obvious what the purpose of the booklet is, which is to let people know what a sampling of teens with CI's think about them. I don't see any problems whatsoever with this information - except that we don't know the backgrounds of these kids to know why they feel so positive about their CI's.

Of course, if I was anti-CI, I would hate the booklet because it's another piece of information out there that may lead parents to decide that a CI is best for their child.

I can't speak about Gallaudet and speech because I have no knowledge of it, but I do know that if they are one of the premier places for people with CI's to go, they should probably do a better job of spreading that word. From the experiences I have had in only the last few months with the strong believers in ASL, I would have been scared to set foot on the campus if I had a CI. If it is a welcoming place for CI people, that's definitely good news.

 

[shel90]

I don't detect Rick being "unclear" on anything, but I do detect sarcasm on his part with his "perhaps" "questions".

Look up the definition of research, and then perhaps you'll understand that the word is used to refer to both scientific and non-scientific types of gathered information [was it really necessary to get rude with Rick?]. This booklet is clearly not claiming it is scientific research.

It's obvious what the purpose of the booklet is, which is to let people know what a sampling of teens with CI's think about them. I don't see any problems whatsoever with this information - except that we don't know the backgrounds of these kids to know why they feel so positive about their CI's.

Of course, if I was anti-CI, I would hate the booklet because it's another piece of information out there that may lead parents to decide that a CI is best for their child.

I can't speak about Gallaudet and speech because I have no knowledge of it, but I do know that if they are one of the premier places for people with CI's to go, they should probably do a better job of spreading that word. From the experiences I have had in only the last few months with the strong believers in ASL, I would have been scared to set foot on the campus if I had a CI. If it is a welcoming place for CI people, that's definitely good news.

It should be cuz when I went there for events and stuff, there were several students with CIs.

 

[shel90]

That is nice to read about children who can fit in both worlds and not be ashamed about their deafness and not be ashamed of wanting a tool to help them in the hearing world.

 

[jillio]

To be fair, most of the research into ASL comes out of Gallaudet - which, you may note, is hugely involved in promoting the use of ASL. That alone doesn't make the research illegitimate; these topics are niche (and polarized) enough that any research done will be funded by people who have an interest in the subject.

All that means is that the researchers have to be very conscientious about publishing not only their results, but their methods and raw data.

An equal amount comes out out the University of California-Berkley.

 

[jillio]

The NDCS is a neutral organisation - we used to receive their magazines when I was a child in the UK and effort was made to represent all deaf children. If you look at their website you will notice that they provide articles on learning how to sign.

While I appreciate that you would rather that the NDCS collaborated with a more neutral organisation, I think that if the methodology is sound then there shouldn't be an issue. As I understand it, the research is being prepared for publication in a peer reviewed journal and usually the methodology is examined before publication is undertaken. I would tend to agree that as the sample size was quite small, that further research needs to be conducted into the issue to see if the hypothesis continues to stand.

There is very little research on the views of teenagers currently, so when this one came up I thought it would be of interest to some people here. It's interesting that many of the respondents know how to sign and identify themselves as "deaf". Surely those are positive findings?

Ihave to agree with you on this point: small sample size. It will generally be note in published results that findings are not generalizable to an entire population due to small sample size. What that means is, while the hypothesis was supported in this study, chances are significant that it will not be supported in a more respresentative sample.

 

[jillio]

While this was a very nice powerpoint presentation, there was no information on how this data was obtained or measured. This really can't fall into the category of research at all. Whether it is qualitative or quanitiative, there are certain guidelines. If this prjuect is accepted by a scholarly journal, I would be interested to see how data was collected, a description of the instrument, how responses were measured, what statistical procedures were used to analyze the data, what the hypothesis and the null hypothesis were, and the final interpretation. As it stands, this is simply anecdote. Doesn't even qualify as a case study.

 

[Boult]

While this was a very nice powerpoint presentation, there was no information on how this data was obtained or measured. This really can't fall into the category of research at all. Whether it is qualitative or quanitiative, there are certain guidelines. If this prjuect is accepted by a scholarly journal, I would be interested to see how data was collected, a description of the instrument, how responses were measured, what statistical procedures were used to analyze the data, what the hypothesis and the null hypothesis were, and the final interpretation. As it stands, this is simply anecdote. Doesn't even qualify as a case study.

it does not say it is a powerpoint presentation. it said it is a booklet on the research they had done.

See page 1, below the table of content, it mentioned the word "research" "The research in this booklet was..."

On page 3, it tells why they produced the booklet.

On page 17 in that booklet, it shows you the details of the study.