Parents may not understand or recall risks associated with children's surgery

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Lighthouse77

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March 15, 2010 Parents of children undergoing ear, nose and throat surgery do not appear to remember all of the risks of the procedures explained to them by clinicians, even when detailed surgical risk counseling and data sheets are used, according to a report in the March issue of Archives of Otolaryngology-Head & Neck Surgery.
Parents may not understand or recall risks associated with children's surgery

-- I'm guessing this would include Cochlear Implant because this is coming from ENT
 
That is very sad to learn that parents have no regard of why there is a chance of risks for children going under the knife (surgery), if there is no emergency at all. It is as if it is ignorance or parents refuse to believe there is no risk in the surgery. That is why there should be no surgery until the doctors need to talk with the clients if the patients are aware about the risk of surgery. As for babies, the babies are soooo cute and beautiful to have surgery just to have CI in their head. It just make me feel like throwing up :)barf:) when this happen to children. Children are precious and special, but not to the expense of fixing the child with surgery unless it is an emergency to repair (meaning if there is an accidents or serious complications to their health. I would love to see children be natural as best as possible until they grow up later to decide if they want CI or not. But that is another story all together. (sigh)
 
Nope. This study has NOTHING to do with CI's. These were children having tubes put in or tonsils taken out. It is unrelated to implants.
 
Lighthouse77 said:
They are talking about surgeries. Cochlear implant is a surgery.
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They are talking about a small group (10-12, I think) of parents whose children were having these specific surgeries. They were asked to write down as many of the 9 possible complications from surgery and most could remember some (average was just over half) but not all.
 
This SMALL study seems to be aimed at the "informed consent" delivery by medical personnel. Conclusions about the parent's carelessness or the magnitude of any risk factors really can't be drawn from it.
 
OTOH much larger research studies have shown that medical information booklets usually gloss over the risks of any surgery, and don't really tell you what they mean in practical terms. Many times I have had surgery (abdominal) where they have said there is a risk of "bladder damage" - now what does bladder damage mean in practical terms, that I will need some stitches and will get better with a few extra nights in hospital or that I will be lifelong urinary incontinent or perhaps a stoma and bag will be required? So you can be informed of the risks without having any idea what the risks are.

Similarly when they inform you of risks that there may be "dizziness" do they mean that at a few points in the day you may feel a little lightheaded or do they mean you will have to surrender your driving license because you can no longer figure out which way is up?

Studies repeatedly show that if the doctor is in favour of an operation he/she will make it sound glorious and without appreciable risk and if they are against it then they will make a meal out of the possible ill effects. A good example is a small-scale unpublished study for the use of ventilation tubes in children with OME only and children with mixed deafness. In children who expect to be "cured" of their hearing loss by the tubes the operation is presented as virtually risk free, quick, easy, magical, successful in 2 out of 3 cases and might make your child a bit grumpy for a while but oh what an improvement in their general outlook. If a child will continue to be in need of a hearing aid afterwards, however, the operation is risky, will lead to infection, fails 1 in 3 times (same stat but stated in the negative) only lasts a few months and you are back to square one. It's the same truth, and the only objective difference is that the child inserting hearing aids has a slightly increased infection risk over the one who does not, but in general it was the doctors' own perceptions that the OME-only children stood to be "mended" by the op and the mixed children would "still be broken" afterwards that made them describe the same operation very differently to the two groups.

Doctors are also people, they are not immune to psychology, and when you have a doctor and a parent both in favour of CI then the doctor under-emphasises the risks and the parent under-remembers the risks, watering down the risks considerably. As a parent who is against vent tubes I can recite the risks very well! I'm not sure I would have remembered them so clearly if I had wanted my daughter to have this operation.
 
It sickens me to see parents put their kids under the knife just to " cure " the child's deafness. That is very selfish on the parents part. The parents SHOULD LEARN sign language and not put their kids under the knife for a NON threatening "illness " Having a hearing loss is not a death sentence !!!
 
SouthFella said:
It sickens me to see parents put their kids under the knife just to " cure " the child's deafness. That is very selfish on the parents part. The parents SHOULD LEARN sign language and not put their kids under the knife for a NON threatening "illness " Having a hearing loss is not a death sentence !!!
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It's not quite as simple, since my daughter is not "deaf enough" to qualify for communication support at school, so I can sign to her at home, I can take her to the deaf nursery, but come school age she will not qualify for the deaf school, she will not qualify for an interpreter, they may even decide she doesn't need a radio aid, since she has already been refused a visiting teacher from the hearing impaired service because her hearing loss doesn't hit the required number of decibels.

So what to do? I am trying to kick the system up the backside as hard as I can for as much as I am worth, but she's never going to get BSL from them thus she needs other strategies. I'm not going to include surgery in that unless she is at risk from an uncontrolled blow-out of her ear drum that would result in more damage than an artificial puncture, but failing that we'll take the non-invasive option every time. Doesn't seem popular, though, nobody seems able to understand why we wouldn't want to "cure" her and don't we want "the best" for her. We can alleviate her hearing difficulties with adaptations to our communication methods and hearing technology, why knock her out and cut bits off?
 
I know a few ones, but the ones i know that doctor mistakely performed on one. This person was in pain for almost two years of trying to tell audiologist. At last, this person went back to ENT and took a test. Dr found that there were some error things in this person's inner ear. THen they have to perform it all over again by cutting and drilling it again to get it fixed right. Thank god this person is alright now.

i can't image about babies, how can they communicate with them if they can't express if they are in pain. What if they thought babies cry and will grow out of it. That's all i can say.

surgery is a big major one. I do consider csection is a major one.
 
SouthFella said:
It sickens me to see parents put their kids under the knife just to " cure " the child's deafness. That is very selfish on the parents part. The parents SHOULD LEARN sign language and not put their kids under the knife for a NON threatening "illness " Having a hearing loss is not a death sentence !!!
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It sickens me that you think you can judge parents without having walked in their shoes. I DO sign. My daughter is fluent in her native ASL. How dare you get on a soap-box and tell me that I shouldn't give my daughter her hearing back? Why would I deny her something that is very useful, and that even you, two-faced as it is, use and benefit from?
 
Lighthouse77 said:
They are talking about surgeries. Cochlear implant is a surgery.
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And I would say that this holds true for all surgeries. I know for a fact that if I have a suicidal child in my office for an interview, the parents hear very different things than I hear. They will always say, "Oh, he/she didn't really mean it. They were just trying to scare us. He/she doesn't need to be hospitalized; its not that serious." They always minimize the risks. They don't want to hear that it is a serious situation. That is one of the reasons that our teen suicide rate is as high as it is.

The same holds true for surgery. Parents will often hear what they want to hear, not what is actually being said.
 
It extends beyond surgery as well. Medication side effects, non surgical procedure risks, riding rides at amusement parks, eating sushi, hot coffee at McDonalds, etc, etc. When the general public is bombarded with risk warnings all day long, they lose their edge.
 
It's not quite as simple, since my daughter is not "deaf enough" to qualify for communication support at school, so I can sign to her at home, I can take her to the deaf nursery, but come school age she will not qualify for the deaf school, she will not qualify for an interpreter, they may even decide she doesn't need a radio aid, since she has already been refused a visiting teacher from the hearing impaired service because her hearing loss doesn't hit the required number of decibels.

So what to do? I am trying to kick the system up the backside as hard as I can for as much as I am worth, but she's never going to get BSL from them
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RoseRed, THAT is rediclous! I do think maybe a good idea might be to ask the people at the Deaf school why she can't go there just b/c she's not "deaf enough" You really need to argue that a mainstream placement with minimal accomondations is TOO "one size fits all"
You know, one way you might be able to get her into "deaf ed" is if she has any speech or language delays. Argue that in a Deaf School she'll be able to improve her speech and language (in some Deaf programs around here there are hearing kids with signficient speech/language delays who use ASL as a primary language) Fight for the placement. Hoh kids have been mainstreamed to the max, for years and years and years and we haven't really acheived all that much (except for the superstars)
 
faire_jour said:
It sickens me that you think you can judge parents without having walked in their shoes. I DO sign. My daughter is fluent in her native ASL. How dare you get on a soap-box and tell me that I shouldn't give my daughter her hearing back? Why would I deny her something that is very useful, and that even you, two-faced as it is, use and benefit from?
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faire jour and other parents considering and/or who have children with cochlear implants:

Do not waste your time and energy on people like southfella for there is nothing you can say or no example of the tens of thousands of children who benefit daily from their cochlear implant that will have any effect upon people like him.

Just keep doing what you are already doing: raising your children with their best ineterests in your hearts and minds as your children are living and loving proof of the tremendous impacts cochlear implants have had, are having and will continue to have upon our children's lives.

To parents considering the implant for their children advice I can give you is to meet as many deaf individuals with and without cochlear implants as possible to get their views and opinions, the same with professionals in the field. In the end you know your child better than anyone and you have your child's best interests, not an agenda, at the forefront of your decision.
Rick
 
Doncha just love it when people are told not to listen to what the deaf adult has to say?:roll:

The deaf adult is the ONLY one who knows what it is to be a deaf child. They have lived the experience.

Hearing parents of deaf children know what it is to be a hearing parent of a deaf child. Only their child has the experience of being deaf. And only someone who has lived that experience know what they are going through.
 
jillio said:
Doncha just love it when people are told not to listen to what the deaf adult has to say?:roll:

The deaf adult is the ONLY one who knows what it is to be a deaf child. They have lived the experience.

Hearing parents of deaf children know what it is to be a hearing parent of a deaf child. Only their child has the experience of being deaf. And only someone who has lived that experience know what they are going through.
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I disagree that you must value *every* deaf person's opinion, just because they are Deaf. (No one here recommends parents listen to Kokonut, do they?) I don't think hearing status necessarily means they are they same life experience. There is such a variety within the deaf-hoh world that, while Deaf adults can provide a wonderful insight into what their life experience was, living with deafness, it won't necessarily translate into what another will experience.
 
faire_jour said:
I disagree that you must value *every* deaf person's opinion, just because they are Deaf. (No one here recommends parents listen to Kokonut, do they?) I don't think hearing status necessarily means they are they same life experience. There is such a variety within the deaf-hoh world that, while Deaf adults can provide a wonderful insight into what their life experience was, living with deafness, it won't necessarily translate into what another will experience.
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Ok but telling others not to listen to someone who is an implant user is ok?
 
shel90 said:
Ok but telling others not to listen to someone who is an implant user is ok?
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I don't think CI or no CI is a factor at all. I think respect for parents and the choices they make is way more important than device or language choices.
 
faire_jour said:
I don't think CI or no CI is a factor at all. I think respect for parents and the choices they make is way more important than device or language choices.
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SouthFella is entitled to his opinion. If one disagrees with him, that's fine but to tell others not to listen to him isnt fair.

Just my opinion.
 
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