family dynamics of disabled children

LydiaNN · Feb 14, 2006

The origins of the word handicapped come from a time when people with disabilities weren't included in society, and could only survive by begging, literally with their cap in hand. It is a very offensive term. I'm sure you don't realize that, but as a pediatric nurse, it would be a good starting point towards developing some sensitivity. Also, it sounds as if you are surprised that the mother would weep at the concept of her family's residence becoming ever less like a home and more like a hospital. That is a very difficult thing for a family to face. Extreme emotion is to be expected. It isn't that she doesn't want her child's care to be easier, it is that she wants her child not to need this care. Every new transition is like the scab on her heart is broken open again. If you do a search for disability awareness and healthcare professionals, you'll pull up lots of hits. As far as what to expect from the family, they go through the seven stages of grief, but rarely come to total acceptance. As a rule, they move betwixt anger, bargaining, depression and acceptance.

ArwenEvenstar · Feb 14, 2006

I wasn't looking to be chastised. Which is how your entire response came across to me.

The family of the child I care for actually uses the term handicapped sometimes. I do not think it is offensive to them, or they wouldn't use the term themselves.

Not everyone in society today is so ultra sensitive about terminology. But in our politically correct age, I know some people are. But that is another topic.

However, thanks for informing me that the term handicapped is grossly offensive to some. I'll try to avoid using it from now on.

Being a private duty nurse in a home is a very unique situation. It is much different than being a hospital nurse or doctor's office nurse or therapist. I was a hospital nurse (non-pediatric) for 14 years before taking this private duty pediatric position. I also have my BSN. But nothing in my education or experience background prepared me for some of the dynamics of working with a disabled child in the home.

I was just being honest in my original post when I said the parent's response surprised me, and I even admitted that my thinking was completely wrong. Not everyone comes from a pediatric or home care background. I want to better educate and inform myself, which is the reason for my original post.

As mentioned in my original post, I am just looking for some professional articles from a nursing (or at least health care) perspective. I have already done web searches using a wide variety of phrases and terms about this issue. I found a lot, but nothing I have found was very helpful or what I was looking for. It was frustrating.

I guess I am looking for information that is both practical and educational. (What kinds of coping/responses is the nurse likely to encounter in the parents of severely disabled children? How can a nurse not get pulled in by the "neediness" of the family but remain compassionate and caring at the same time?)

(If the term "neediness" is offensive to anyone reading this, I apologize in advance. But the family - and I think families of disabled children in general - can be very "needy". This is certainly understandable. But if the nurse was to cave in to all the families expectations/demands/desires, the nurse could be working 100 hours a week. The nurse must set professional boundaries.)

If anyone knows of a specific web site, or specific medical journal, or other specific source that would help me - please do let me know. Feel free to send me a private message.

MissJoRN, RN · Feb 14, 2006

Sorry, I don't know of any specific articles that might help. I know it's not what you're asking for, but I always recommend "Quest" magazine to nurses new to long-term peds. It's published by the Muscular Dystrophy Assoc. and can be subscribed to through their site. Much of the content though is relevant to any type of disability (frankly a term that offends me as much as any, but I'm still looking for the perfect word) You'll find articles written from a parents perspective, and from the perspective of affected people themselves. A glimpse into what bothers them and how they cope. You'll also learn a lot about some of the assistive devices that will be new to you in long-term peds- braces, MAFOs, wheelchair accessible vehicles, adaptive swimming equipment, talkers, lifts... new technology in every house, it can be confusing and exciting!

Back to your journal search- Honestly, anything you find will probably be so caught up in theory that it won't reflect any 'real" famiily. I've seen families range from strong denial that their poor-prognosis, slowly decomponsating child isn't going to get better to families that were so "accepting" and "used" to the prognosis that they didn't seem to realize the child was actually still alive and in in their home wanting attention. Either extreme is difficult to deal with and tragic. Your family is probably in the middle somewhere and some days the individuals may be more accepting or more denying and Mom and Dad will differ to the degrees of what they can cope with today. Unfortunately, I think the skill in dealing with the family is learned over time with you hopefully stating out with a lot of intuition and ready to observe. It is hard to provide the support they need without getting to caught up in persoanl affairs, some families like to pull you in more than others, some manipulate, it's a lot to sort out sometimes. Know when to step in and when to back off but no one can tell you how to know that. Sometimes I come home feeling overwhelmed by what a parent unloaded on me and the responsibility of personal info (esp when it's complaining about individuals I know- other nurses, doctors, aunts) othertimes I wonder- should I have done something... said something... how can I help more?

The bed example... I understand you thinking they might be glad for the equipment- you're new and it's easy to see how hard lifting the child is. They've adjusted to the weight over time. Some families would have reacted differently. You realized you guessed wrong, you listened to the supervisor, you learned. The mistake would have been saying something like "Mrs Smith, you're going to love this new lift, it will make moving Sarah so easy!" Just pause and reflect how she seems to feel, take a cue from her and go back to that old (yes, trite!) nursing school "therapeutic conversation" She'll warm to the idea in time.

Not sure what else to offer you right now... maybe more will come to me...

Editorial Team / Admin · Feb 14, 2006

i posted this in the home health section, but it is also pediatric related. and i thought a pediatric nurse might get me going in the right direction.
i've been doing private duty in a home caring for a severely disabled child since last march. child is 8 years old and this is a permanent disability. (child will not improve or get better.) despite the challenges of working with a severely disabled child, it is otherwise an ideal situation and i love this job!
i am looking for information/professional articles on the "family dynamics" of handicapped children - especially from a nursing perspective. i have searched on the web and found a handful of slightly helpful articles, but definitely not what i was hoping for!
what was i hoping for? articles that deal with questions like:
what kinds of coping/responses is the nurse likely to encounter in the parents of severely disabled children? what is "typical" behavior or stages that parents go through? (especially as the years go by and the disability is severe and long-term) how can a nurse respond? how can a nurse not get pulled in by the "neediness" of the family but remain compassionate at the same time?
i am new to both private duty and caring for a disabled child - and i guess i was hoping for articles/info that would lay out the basics for me.
the child i care for is growing and getting heavier, and we are going to have to get more equipment in the home. (a pediatric lift and a pediatric hospital bed). the mother became hysterical and wept about this! it was quite a scene. my supervisor told me, "it's very difficult for parents of handicapped children to accept that their child has entered another ''level of care''. it often forces parents to face that the child is not getting better and the situation will only worsen as time goes on. this presents such a loss of control that, emotionally, parents are overwhelmed and i think this is what happened to her".
i thought the mom would be glad to have equipment that would make her child's care easier, but that was very wrong thinking on my part!!!!!
this is why i'd love to find some good professional articles from a nursing perspective on this issue. so i will know what to expect and be ready to respond. any ideas where i should look? or how i should "word" a web search? any personal advice? thanks!!!!!

hello, arwenevenstar,

try these links:

http://www.schwablearning.org/articles.asp?r=328

http://www.achildsvoice.net/family.html

http://www.nichcy.org/pubs/outprint/nd11txt.htm

http://www.state.in.us/fssa/servicedisabl/bqis/pcpguidelines.html

http://www.springerpub.com/prod.aspx?prod_id=55812

hope these give you the info you need. i have to admire what you are doing. and, the drive to gather information in order to better educate yourself and in turn, benefit the entire family unit.

good luck.

Jolie, BSN · Feb 14, 2006

Arwen Evenstar,

I'm sorry for the response you received to your inquiry.

As a former NICU nurse, I have discharged many children who required homecare for a variety of conditions. Some who were likely to improve with time, some who were not. I have always admired the nurses who cared for these special children at home, because I believe they have a much more difficult job than we NICU nurses do, as they must help the children and parents to cope with the long term effects of disabilities. And do so independently, without colleagues immediately available to mentor them and offer support and guidance in new situations.

Thank you for all you do! And thank you for trying to expand your horizons in order to serve your families even better!

prmenrs, RN · Feb 15, 2006

Every time a parent of a special needs child is slapped in the face w/more evidence that his/her offspring is not normal and may never be normal, s/he experiences another grief reaction. That's exactly what it is, too. And it reminds the parent of their failure. A reproductive failure, a parenting failure. "if I were a good parent, I could fix this, and my baby would be normal." If we lived in a different culture or a different species, our genetic imperative is to contribute to the species. We didn't do this. A fatal error in Darwinian terms. Harsh, heartbreaking reality.

It's very hard for someone who has not been in those shoes to "get" this mind set. Even the parent cannot necessarily put it into words. But, I'm here to tell you, that's what I've experienced and continue to experience as the adoptive mother of a special needs [now adult] individual.

So, if you think about how grief process goes--denial, depression, etc., and try to understand going through it again and again, each time your child fails to progress as you would hope, you might be able to see where this family is coming from.

Do I have references? Evidence-based protocols. No. I'm just telling you how I experience this journey. First hand, and how I've seen other families deal w/the situation.

The family will, hopefully, "process" their reaction, and decide to accept new conditions.

MissJoRN, RN · Feb 15, 2006

Siri, Thanks for the great links, I'm looking forward to time to check them out.

Jolie, Thanks for the "recognition" on the other hand, when I started as a home health aide then started nursing school my goal was to be a NICU nurse... I was so impressed looking at my kids who were former micro preemies and their photo albums and seeing the progression they did make. Realizing that everytime a preemie has a good outcome the next generation has a better chance through more knowledge. I may never be a NICU nurse but I have an idea of what you do, Thanks for letting me meet some great kids!

Prmenrs, Your post reminds me of a case I had years ago (as a HHA)- I took care of that little girl 40 hrs a week- more daylight time than her parents got to spend with her and was almost in more af a "nanny" role. One rainy summer day we started cleaning her room- really cleaning- sorting out clothing that was too small and toys that were outgrown. I remember putting her outgrown shoes in a bag and was struck by something being "odd" When I realized that it was how perfect her old shoes were- no scuffs, no wear, no dirt- after all she never walked in them- I was angry, very angry for her. She wasn't even my child but there was a glimpse of what the parents go through. That was a slap in the face moment.

prmenrs, RN · Feb 15, 2006

I just remembered a resource that is really the parent/family point of view: Exceptional Parent.

http://www.eparent.com/

Might give that a look. Good luck in your endeavor.

ArwenEvenstar · Feb 15, 2006

Thanks for all the new posts! Both the personal thoughts and links/references were helpful. The one link was actually for a textbook on this issue (Families Living with Chronic Illness and Disability

Interventions, Challenges, and Opportunities). If there is a textbook, some colleges/universities must offer a class in this... I am going to look into it locally. Quest magazine looks good too - something to at least keep you informed about different aspects/technology of caring for the disabled.

I am new to pediatrics, private duty, and long term disability. Things that might be "common sense" to those with experience are not common sense to someone totally new to it. Knowledge is important to me. Thanks - you have helped me get going in the right direction!

P.S. I also did some web searching on the terms disabled vs. handicapped. My search revealed that there is very mixed opinions/views on which term is best. For instance, the one site said that many disabled people do not mind the term handicapped, and that "politically charged activists" are the ones who are offended by it. (And the family of the child I care for actually uses the term handicapped more frequently than disabled... ) But then, other sources did indeed say that the term handicapped is very offensive!

Maybe I'll stop using both terms and just tell people I care for a child with "congenital anomaly 17 Q". Nothing offensive there, but they will be scratching their heads wondering what in the world I am talking about...HAHA!

LydiaNN · Feb 15, 2006

Thanks for all the new posts! Both the personal thoughts and links/references were helpful. The one link was actually for a textbook on this issue (Families Living with Chronic Illness and Disability
Interventions, Challenges, and Opportunities). If there is a textbook, some colleges/universities must offer a class in this... I am going to look into it locally. Quest magazine looks good too - something to at least keep you informed about different aspects/technology of caring for the disabled.
I am new to pediatrics, private duty, and long term disability. Things that might be "common sense" to those with experience are not common sense to someone totally new to it. Knowledge is important to me. Thanks - you have helped me get going in the right direction!
P.S. I also did some web searching on the terms disabled vs. handicapped. My search revealed that there is very mixed opinions/views on which term is best. For instance, the one site said that many disabled people do not mind the term handicapped, and that "politically charged activists" are the ones who are offended by it. (And the family of the child I care for actually uses the term handicapped more frequently than disabled... ) But then, other sources did indeed say that the term handicapped is very offensive!
Maybe I'll stop using both terms and just tell people I care for a child with "congenital anomaly 17 Q". Nothing offensive there, but they will be scratching their heads wondering what in the world I am talking about...HAHA!

I'd love to see those sources that say there are mixed opinions about this. If you'd like, I can cite you a number of sources that state otherwise. As a matter of fact, I did just that yesterday before editing my post (which has since been removed, with no explanation provided to me) and deciding I would stay out of it. Since you've brought this issue back up, however, I am very interested to know who is saying that 'handicapped' is an acceptable term. Given its origins, that just boggles my mind.

kidsccrn · Feb 15, 2006

Hi,

I'm not sure where to start but here goes.

I have been a peds nurse for 26 yrs. NICU, PICU, Peds ED and homecare.So I have seen a spectrum of reactions with parents of a special needs child. Don't try to analyze how parents react it is so individual just listen- that is worth more then any advice you can give.

I am also the mother of a now 23 yr old (ex-premie ) who is disabled both mentally and physically. She is ambulatory but uses a wheelchair for long distances. At 16 she had complications from a nissen fundoplication and now has G-Tube fdgs at night and nursing at night. She is a beautiful young women and is loved by everyone she has contact with but will always be dependent. I have run the spectrum of emotions and everytime we had to add some kind of support it was a greiving process, you see to us it is just another way we have failed. I still greive for the beautiful women she could have been. I do not want someone telling me how to feel or tell me that I should be over it by now. Every milestone has been a triumph but it has been a long road. I am tired and I now have people to help me but it has taken me a long time to get to that point. I now accept the fact that no matter how much we do she is never going to be "normal" what ever that means.We love her unconditionally and we are blessed to have her, but I also have a right to feel cheated, angry, sad and happy.

Sorry this is so long but you need to know there is not a book of etiquette for parents to follow when they are being told there child has CP etc. Everyone is an individual just listen even if it doesn't make sense. The next day things might seem different after they have a chance to let it sink in.