private duty pediatric home care/family dynamics

[ArwenEvenstar]

I am not exactly sure if I am posting this in the best place or wording it right - but thought I'd try here. I am always so wordy also... no one may even be get through all this...

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 could never go back to the hospital! (Before this I was a traditional hospital nurse.)

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 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 wrong thinking on my part!!

See... 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!!!!!