parents book for NICU

NICUNURSE · Dec 5, 2002

Enfamil has a wonderful parent book. The language used is very appropriate and it goes through just about everything that they can expect to see while their baby is in the NICU. What I like is that they use the medical terms that they will hear, but then explains what those terms mean in lay terms. You might want to ask your rep for one and incorporate it into your binder.

On our unit, we have a welcome letter for our parents, telling them what the NICU is, who they will be interacting with (Attendings, residents, RN's, NNP's, etc.), unit policies (handwashing, visiting hours).

Heather333 · Dec 5, 2002

We have folders at the bedside; we call them mailboxes. They are explained to parents on admission and new info is put into them according to what is going on with the babies (ex. hyperbili, reflux, hypoglycemia, etc.) I like it because the parents have concrete info to go by and can use it as a reference at any time. We also have a booklet that we give them when the baby is admitted. It has definitions to terms they might frequently hear while their baby is in the NICU. Also handouts about visitation are given and well as a visitors list for them to fill out.

Heather

Anaclaire · Dec 7, 2002

Although I'm not presently working, I can comment on what we did in the last Level III NICU I worked in did...

On admission we gave the parents a sheet of paper as mentioned by NICUNURSE above which included similar things... visiting hours, names of doctors, NNPs, and explained briefly the roles of our nutritionist, pharmacist, discharge planner, physical therapists, x-ray and ultrasound techs, speech therapists, nurses, and our "Family Representative". We ended up calling our "Social Worker" our "Family Representative" because we had so many parents with "issues" where they immediately thought "they want to take my baby away" when they heard the term "Social Worker". Sad but true. We did however notice a difference when we explained the role of our Family Therapist was to assist the families and their babies in any way we could... from transportation to finding a crib, etc. Our Welcome Letter also included brief information about handwashing, armbands, visitor policies, how confidential information is handled, our phone numbers including the 800 number, how to contact the hospital's patient representative, etc.

We gave as little information as possible at first because the families are generally overwhelmed upon the first meeting... many of them had misplaced the "welcome" letter or hadn't even read it.

We also began a "Baby Book" upon admission. It would be a 1 1/2 inch ring hard back binder with a plastic front where we could insert a paper with the baby's name. Inside, would automatically be placed another Welcome Letter, more detailed information about the hospital (like locations of dining rooms, that security can walk parents to their cars if parents wish, that our NICU has two patient rooms dedicated to parents who live out of town and want to spend a night or two to be near their baby; for breastfeeding moms who need to be there around the clock to nurse; for parents and their babies to spend the night in for a night or two prior to discharge to work out any difficulties they might have before going home with their baby; and for grieving parents of babies who aren't expected to live. (By the way, the "Family Room" was usually never occupied so we could always have a place in case it was needed for grieving families. The second room was called the "Parent's Room" and was used for the other uses mentioned above. Our hospital also had 10 patient rooms on another floor near the adult ICUs for family to spend the night in for a nominal fee... our NICU Family and Parent's Rooms were free of charge.)

Along with this information was a list of terms and definitions. We placed some of those dividers in there to divide the other pages as needed. As soon as something was known about a baby's condition or a baby care item was implemented we'd include a page or two of information for them. (Bili-lights, cord care, UVC-UAC, PICCs, hypoglycemia, breastfeeding and milk pumping, bulb suctioning, gavage feeding, ventillators, CPAP, NC O2, Home Medications, etc. Towards the end the book would receive it's pages on CPR and Rescue Breathing and general first aid when the parents had completed those courses. Each time we had the parents visit we'd somehow work into the conversation a question as to whether they've looked at their "Baby Book" recently and if they had any questions. The parents are told the book is to stay in the baby's bed/isolette/bedside drawer until discharge.

It worked out really well and we had loads of positive comments from the parents. Our Discharge Planner was in charge of the books and each baby was assigned a Primary Nurse on admission. The Primary Nurse would try to be assigned that patient each time they worked but it didn't always work out... anyway, between the Primary Nurse and the Discharge Planner coordinating things with each other and the chart, the "Baby Book" was updated and/or reviewed daily to keep it current. We quickly found out that the parents were reading them cover to cover often and if they came in and found their baby had progressed to gavage feedings and there wasn't a "page" in the Baby Book explaining the feedings, they quickly would let us know and often be unhappy that the information wasn't already in the book. I'd suggest for you to be sure to update the books as quickly as possible to help instill the confidence of the parents... they seemed to think that if we kept the books up to date then we were doing everything care-wise promptly and properly for their baby too. Strange but true.

By the way, we found the book, "Newborn Intensive Care: What Every Parent Needs to Know" by Jeanette Zaichkin, RNC, MN to be very helpful in designing our patient teaching sheets. We referenced the book when using information from it and recommended the book to our parents. It also comes in a Spanish version. It's quite popular and I'd bet you are already familiar with it.

Sure hope your program is as successful as ours was!!!

Please forgive me for writing so much!!!

Warmly,

Anaclaire

nurseiam · Dec 7, 2002

Thanks for the great suggestions! The Baby book sounds like what our manager is wanting. :-)

Anaclaire · Dec 8, 2002

I saw another good looking book that describes things well in lay terms for parents to understand when I was browsing at our local bookstore tonight. I'd seen it before so I wrote the information about the book down to share it with you too. I'd bet you are already aware of it too but thought I'd mention it anyway.

"Preemies: The Essential Guide for Parents of Premature Babies" by Dana Wechsler Linden, Emma Trenti Paroli, and Mia Wechsler Doron, M.D. Published by Pocket Books in August 2000. ISBN# 0-671-03491-X List price is $24.95 It's almost 600 pages long in paperback form.

NICU_Nurse, BSN, RN · Dec 8, 2002

I have to second the recommendation of the 'Preemies' book; I've mentioned it on here more than once, and it has been TREMENDOUSLY VALUABLE to me, as a new nurse, explaining and breaking down typical NICU procedures to parents. It is written so well, in question and answer format, and it is a fantastic help in writing fact sheets or patient handouts for families. ;>) It's my favorite book, and I've bought SO many in the last year. I believe it is also available at the library.

gauge14iv, MSN, APRN, NP · Dec 28, 2002

Go to pediatrix.com. - they have an excellent parents resource there and our parents binder is modeled after this one (We use pediatrix group physicians)

If you can avoid advertising - formula, pharm or otherwise - then this is probably best. Anything with a brand name on it I personally avoid handing to parents unless I personally am specifically and actually recommending that product to a parent. (Which I rarely do!)

:)