Tuesday, August 16, 2011

No Sh@%!, Sherlock!


In my most recent newsletter from the terrific website epilepsy.com, I read about a study of mothers and their children with epilepsy. Here's the excerpt, and while I need to find the whole study and read it, I can't help but think no shit, Sherlock. What do we do about it, though?


In the August 2011 issue of Epilepsy Research, Doctors Akay and colleagues from the Dokuz Eylul University School of Medicine in Izmir, Turkey present an interesting analysis addressing caretakers of children with epilepsy.  Much attention has been paid  to the quality of life to the individual with epilepsy, but oftentimes it is unclear what impact the diagnosis of epilepsy can have on those who care for these individuals.  In the study conducted out of the department of pediatric neurology, 50 children with epilepsy and their mothers agreed to join the study.  These individuals were  compared to a control group recruited from a local school near the same university hospital.  The study assessed what impact from an emotional standpoint does the diagnosis of epilepsy have on mothers with children with epilepsy as based on their performance on a Beck Depression Inventory, State-Trait Anxiety Inventory, Parental Attitude Research Instrument, and Family Assessment Device. 
The investigators reported that mothers whose children had epilepsy scored higher with depression and anxiety compared to mothers of the control group.    The authors concluded that for mothers of children who have epilepsy, the epilepsy may have an adverse impact on the caretakers’ lives as demonstrated by the higher propensity towards anxiety and depression.
This study is a fascinating one due to the fact it highlights that epilepsy did not just affect the one individual with seizures, but seems to permeate through the entire social support structure for any given patient.  The study is another reminder that in managing individuals with seizures we need to give due consideration to the caretaker’s family members who are also involved in their care so as to make sure that we improve their quality of life as well as the individual with seizures.

19 comments:

  1. Wow. Like a study was needed for this one--just check the Internet, yo.

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  2. Duh.

    Support systems for caretakers are so important, especially when it comes to those individuals who care for others with chronic and unpredictable illnesses. I suspect that if many of these caretakers were tested for PTSD, it would be prevalent throughout the population.

    Love.

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  3. Well, maybe in TURKEY, but here in the good old US of A we caregivers are just dancing through rainbows all the time.

    Or maybe we aren't. Perhaps we need a study.

    P.s. I find it hilarious that my captcha word to post this is "focke"

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  4. What a waste of precious time and one penny spent, on that stupid ass study.

    But I agree with you,what do we do about it? I have surrounded myself with an intimate group of beautiful friends that sure would benefit from a solution.

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  5. Although I totally understand your response, it's important that studies like these are carried out, even though people who are intimately involved with the issue can predict what the outcome will be. However, when it comes time to allocate funds for various projects, the first question that is asked is "how do we know this is really an issue? Has any research been done to demonstrate that it's really a problem?" And then they look around, and find a study like this. In this day and age where money is not flowing freely for special needs issues, it's important to have studies like this to justify the necessary financial support.

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  6. I agree with SK3 - while it often amazing at what sorts of studies do get funded or supported by universities - it's important for these questions to be quantified.

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  7. Oh dear.
    What's next? The Earth is round? Heat rises? The Pope is Catholic?

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  8. now you can cite this study as you fight for benefits in the future. would that it would help!

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  9. Geez, I wonder if other people with other children with special needs. Maybe they should spend a huge with amount of money for a similar study instead of spending it how it studying the children with special needs.

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  10. I believe you summed it up nicely in your title but Angella is right- you can keep that study in your toolbox to pull out and use as needed.

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  11. SK3 -- I know what you're saying, but studies like these HAVE been done and finished years and years ago. Physicians, parent advocates and those who advocate for children with special healthcare needs have been talking about this stuff for decades -- and have quantified it as well. Interestingly, epilepsy and its effect on families is one of the most poorly understood and funded of all diseases -- for a myriad of reasons. I don't hold any hope that money will EVER be allocated for families of children with special needs -- as we speak, any money that has been allocated is not just dribbling but actually gushing away. Obvious studies like this one will probably only serve to affirm what most of us feel -- and that's important. I doubt that they will be able to be used, though --

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  12. Wow. They could have asked any of us moms and gotten that information straight from the horses mouth.

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  13. Quelle surprise!

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  14. Not at all surprising. I did not grow up with the disease. I didn't have my first bout with it until I was 23 so my family didn't have to live with it and I don't think they have actually ever seen me have one. My sister and I are not close and well...long story. I have had a couple boyfriends witness them. That is about it. At any rate, I think it is difficult for anyone who loves a person to see them lose complete control of consciousness. You fear for their well being and their life at every turn. The anxiety for an adult with epilepsy is a daily thing, but you learn to live with it. I think that anxiety is transferred to the parent when raising a child.
    Noelle

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  15. I agree with others that say that it is important to scientifically document things that communities like this one know intuitively. But I also share your frustration. It is such an inefficient way to create knowledge. There is this study that is similar with a little less of the NSS factor. http://www.ucsf.edu/news/2011/02/9431/aging-telomeres-linked-chronic-disease-and-health "In their initial study of caregiver mothers of chronically ill children and control mothers of healthy children in 2004, perceived psychological stress – and the number of years of caring for their chronically ill children – was associated with shorter telomere length and less telomerase activity in these mothers, providing the first indication that stress may have an impact on telomere maintenance."

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  16. Seriously? They spend money on this shit! and studies liike the family that eats together is closer and if you read to your child 15 minutes a day they will have higher academic achievement. I'm sick of these studies. Anxiety. No kidding.Sometimes you don't even realize it like tonight when I called The Teenager and she didn't answer and I called her again and then I thought my God is she having a seizure and go tearing up the stairs. I had no clue how easily the thought triggered massive anxiety apparently always under the surface.

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