Question for parents of chronically ill children - Mothering Forums

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Old 09-10-2008, 04:41 PM - Thread Starter
 
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I am in the process of getting my doctorate in Clinical Psychology and am creating a program for chronically ill children. It would apply to either children who are spending a large amount of time in the hospital or those who are outpatient. This would be a 10-18 week program, meaning that the child would be in a group with other chronically ill children for one hour, once per week. The group would focus on helping children deal with and understand their illness. It would be less education and more therapy related. Each week would have a different focus or task, but with the main goal of reducing stress and creating well-being. I am still in the process of creating this program and my questions to you are:

What would you want your child to get out of a program like this?
What are they dealing with emotionally that they need help with?
Would you have the time to bring your child to a therapy group like this, once per week?
Would you be interested in a group like this for yourself and/or your spouse or your other children?


Thank you for reading and responding!!
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Old 09-10-2008, 04:44 PM
 
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I'm blessed with two healthy kids, but I do have a question.
How would infection control be handled? If I had a kid with CF, for example, I wouldn't want to risk getting my kid sicker in a group designed to help him/her.
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Old 09-10-2008, 05:41 PM - Thread Starter
 
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That is a good question. Typically this group would be for children who are not in isolation, so children who could safely be around other children.
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Old 09-10-2008, 06:56 PM
 
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Linden's still pretty young, but I think it could be cool. Right now our biggest issue is he wants to eat but can't. He doesn't understand why he's the only one that can't and I can't figure out how to deal with it. So it would be helpful with stuff like that. But mainly, I'd want my kid to have something like that so that he could see other kids like himself.

I would worry in winter months about infection and illness, so we would probably skip out during the winter.
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Old 09-11-2008, 02:03 AM
 
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I would love for my 10 yr old to participate in something like that. He is just now starting to be affected emotionally by his medical issues (that he is different from other kids, he feels guilty and that we are mad at him for being sick, that other people think he is using illness as an excuse) and I think it helps to see that other people are going through things too. At his age, I am not that concerned with infection control - he is in school so he is exposed to everything anyway.
I would want to him to met other kids with medical problems, learn some stress reduction techniques and talk about his feelings around his illness. I would also love to be part of a group with other parents.
Good luck!
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Old 09-11-2008, 02:22 AM
 
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Originally Posted by Freud View Post
What would you want your child to get out of a program like this?
What are they dealing with emotionally that they need help with?
Would you have the time to bring your child to a therapy group like this, once per week?
Would you be interested in a group like this for yourself and/or your spouse or your other children?


Thank you for reading and responding!!
My daughter is still young at only 2.5 but has multiple chronic medical problems that have necessitated about 8 hospital stays over the last year. The belief is that this will continue and not necessarily improve as she gets older but at this point I can only speak to what we see her going through emotionally with all of the change and instability in her life. I wish she could speak and tell me what goes on in her head but her body language can tell me a lot even at her age.

I would love for my daughter to be involved in something like that during the non-flu/RSV season. I already see a lot of confusion and emotional turmoil whenever she's hospitalized, surrounded by all the new faces, harsh treatment and lack of sleep. Having others she could talk with about how she feels and to know that she's not the only one would be very helpful. Just knowing how to sort through her emotions really.

And yes I would enjoy a group like that. My husband not so much but he's not a big group person.
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Old 09-11-2008, 12:40 PM
 
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What would you want your child to get out of a program like this?
My son is 4 1/2. He has severe Hemophilia. He has had a mix of very, very serious emergencies and surgeries, and then just regular, consistent hospital intervention, and then the psychological strain of having limits other kids wouldn't have, and then he has lots of medical care at home -- I've learned to access his veins with an IV needle, for example, and do so at home at least twice a week, sometimes more. The transition from me being the comforter during needle sticks to the inflictor of needle sticks has been hard for him. It's also been empowering.

I would love for him to feel like there was a setting where talking about all that stuff and experiencing all that stuff was normal. Even if he didn't want to talk, I'd love him to have a social set where stories like that would be understood, and seen as part of life. I would love for him to feel understood by other kids. He gets that a little when regular folks have hospital visits or surgeries, but I want him to have it more consistently.

I would also love for him to not feel like the group was *only* for that kind of talk, but just a place where that kind of talk and stories was accepted and understood, in the context of everything else interesting there is in life.

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What are they dealing with emotionally that they need help with?
My son could use help with the challenge of having *us* in charge of medical procedures that have previously had major trauma attached to them -- i.e. needle sticks. He has always been a very, very hard stick, and has had lots of trauma associated with that. Now that we're doing sticks at home, by ourselves without a nurse, the psychological component is very present. We've developed a series of visualizations and dialogues that we do that really help him, and it's become an empowering experience at this point, but he could always use a resource, someone apart from us, who is willing to meet him in those hard places, and who knows about them.

He could use, somehow, an ability to process his relationship with *us* around his medical issues. The limits we set for him are necessarily different, not just because of the hemophilia but because of the recent brain hemhorrage and brain surgery. I think it's hard for him when he sees other parents having less protective relationships with their kids. It's not just the limits, it's the relationship that develops behind the limits.

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Would you have the time to bring your child to a therapy group like this, once per week?
Some weeks yes, some weeks no.

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Would you be interested in a group like this for yourself and/or your spouse or your other children?
Yes, my spouse and I would benefit.

Thanks for doing this! The medical community definitely needs more things like this. You would think there would be more, but we have found that they're all specifically focused on each illness, rather than a general focus on chronic medical intervention and the associated experiences.

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The intuitive mind is a sacred gift and the rational mind is a faithful servant. We have created a society that honors the servant and has forgotten the gift. - Albert Einstein

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Old 09-11-2008, 01:32 PM - Thread Starter
 
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Thank you all for replying! I truly appreciate it, as I want this program to be specifically tailored to the needs/desires of the child and their parents. You have definitely helped me in designing this program! In the not-so-distant future, you might see it at your hospital...my goal is to go public with it.
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Old 09-11-2008, 06:27 PM
 
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That is a good question. Typically this group would be for children who are not in isolation, so children who could safely be around other children.
And what about the children who ARE immunocompromised?? So far on our journey I feel like we are getting the attitude of, "Oh, sorry to hear that, but you are SOL so go get back in your bubble, shut up and deal with it 'cause it's good for you."

We would LOVE to have some sort of activity and/or therapy to do this fall/winter. But since dd is immunocompromised there is nothing except for private lessons or private therapies. But we can't afford any of this because we have medical expenses!!!!

Sorry to vent on you, I know that no one is trying to keep us out. It's just really isolating and hard to hear "Not for You" again.
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Old 09-11-2008, 11:22 PM - Thread Starter
 
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I hear ya. Do you have any suggestions? I would love to be able to design a group for children who are immunocompromised, but so far it seems near impossible, because it is too dangerous for them to be around other children. Would they be safe with face masks and gloves? If so, they could certainly join the group.
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Old 09-12-2008, 12:41 AM
 
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do you konw how contact and droplette precautions work in a hospital? Everyone there would have to scrub in, put on a gown and mask, and there couldn't be any shared items (pens, paper, toys, etc.). And the location would have to be clean. A hospital would not be the place to hold a meeting like that cause they're full of all the uber germs. It would be hard to arrange and you'd have to have a dr's help figuring out all the details and precautions, but I think you could do it.
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Old 09-12-2008, 01:20 AM - Thread Starter
 
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Thanks for the info. I will definitely keep it in mind for my next program development. The current one will have to remain for children not in isolation or who are not immunocompromised, as there are significant parts of it that include play therapy (as play is the language of children). The children will be sharing toys and will be in close contact with one another.
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Old 09-12-2008, 04:32 AM
 
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I think something like this would be great - I'm not sure ind what ways it would benefit my dd, or how much of it she would understand since she has a lot of cognitive and behavioral issues and I would worry that she would be a major distraction...

BUT if she could participate I would love to see the element of medical fear played out with other children who've experienced similar things. She's had a lot of traumatic medical experiences - nothing done intentionally to harm her - but things like the needle sticks, like another poster was talking about, and lots of other scary to her type procedures, like being in a papoose - stuff like that.
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