Join now

Already a member? Sign in

Welcome to Inspire!

What - Inspire is a place where you can connect with people who share your health concerns and find information and advice in groups sponsored by organizations you know and trust.

Why - As a member you can use Inspire to let friends and family know how you're doing, contact others who share your health concerns, receive personalized updates and information about participating in surveys and clinical trials, and more.

How - Joining Inspire is completely free and usually takes less than a minute. Join now!

corner corner corner

NICU Social Worker- Ideas wanted!

dmnicu
3 Recommendations

I am the social worker for a level 3 NICU in Atlanta. I'm in the process of starting a support group for our mothers and was hoping to receive from feedback about what you think would be helpful to address during this support group.

What was helpful (or would have been helpful) to you while your baby was/is in the NICU?

Also, any suggestions on other supports I can provide to our parents?

Any suggestions are greatly appreciated-it is important to me that I provide our parents as much support as possible!
Thanks!

Explore topics in this discussion:

Pain Child development

28 replies

babyalex

Another preemie mom and I are starting a N.I.C.U. Parent Support Group. Our first meeting is going to be Thursday, November 13TH. Our meetings are going to held during the evening shift change. We will serve food, have door prizes, and a guest speaker. Our plan is share our experience's, have discussions, and the let the guest speaker's talk. For our first meeting we will have someone from Early Intervention from Arkansas and Oklahoma. We have also invited the Social Workers from the hospital.

We have been in contact with the states March of Dimes. They have been wonderful in getting us literature.

I hope this helps.

Christina
www.christinastengel.weebly.com

2inoneyear

This is probably not quite what you are looking for, but I really wish that the social worker in my NICU had been more informed about follow-up services. Our social worker never discussed early intervention or any other local support programs for our babies once they left the NICU. In fact, she never even spoke to me because I did not qualify for WIC or medicaid so I guess in her mind, I didn't need any help.

I work in early intervention so I was able to get the services I needed for my girls, but I was alarmed by how many families probably fall through the cracks in our community because the NICU social worker does not provide that information. The nurses mentioned EI to me, but did not give me any handouts (they did not know that I worked in EI so that was not the reason). In actuality, the information provided by the nurses about our state's EI program was incorrect. I do not blame the nurses- I feel that is the social worker's job.

When you are in the NICU, you are completely overwhelmed. Parents need information in their hands so they can review it later. Simply telling them something once or even twice is not going to stick in many situations. Especially with the very complex babies- many of those parents are focused on medical appointments, not child development so they need to be reminded not to let the EI side get pushed aside.

This is really not the social worker's area, but I am sure it will come up in your support group- the concept of adjusted age. I am shocked by how many preemie moms I meet through EI who never had the adjusted age formula explained to them in the NICU (or they don't remember because they were being told 100 other things that day). Maybe you could just prepare your families for the fact that their babies probably won't look like typical 3 month olds or 6 month olds and that people will ask them questions about "why their baby is behind."

I know that I am focusing on issues that come up after NICU discharge, but in reality, I think that is when most families need a lot of help. When you are in the NICU, you usually have a lot of resources available- medical professionals answer your questions, family members tend to be pretty supportive, you can (maybe) get a full night of sleep. However, when you leave the NICU, you are pretty much on your own and I think that is when a lot of moms feel even more overwhelmed. They need to feel prepared and have resources in place and/or available for that time.

Mambo1106

My son was in the NICU for three months, when I was still in recovery the hospital had the social workers going around to talk to the mothers. To be honest, I still haven't made up my mind whether this was a good strategy, being that I am a social worker myself I guess I understand the perspective but being the person lying in the hospital bed I also felt uncomfortable.
My outlook of it began to change for the better once I was back on my feet and completely concentrating on my son. My social worker would come by once a day to check on us. A Preemie Parent Support group was started and we would meet once a week.
What I found so helpful was that it was so inviting, there was refreshments and it was always based on what the parents wanted to speak of, so although the social workers had agendas they were always flexible to change of topics.
While my son was in the NICU, support group was held on Thursday in the early afternoon, because the parents (usually the mothers) were there but when we were about to be discharged the social workers were beginning an evening support group that was catered to the fathers because men tend to handle these kinds of things differently, which I thought was fantastic.
Another important factor was that my social worker provided good case management as well, she was extremely helpful with aftercare services as well, E.I., visiting nurse services, preemie groups and websites, NICU follow- up clinic, WIC and disability information.
I wish you much luck with your support group.

Mgnsmom

During Megan's NICU stay, I would have loved to just talk to the other parents in the NICU. Just have an open discussion about feelings, what our kids are going through and how we are coping. I did have an opportunity to have coffee with one of the other NICU Moms and we ended up talking for 4 hours. It made such a difference for both of us!

We did have an awesome social worker at our hospital that tried to hold a group, but my husband and I were the only ones that attended the meetings!

At one of the meetings she had the NICU OT talk to us about development in the NICU - bottle feeding, changing positions in the isolette, etc. She also talked a little bit about post-NICU development - tummy time, head preferences, EI, etc. That was one of my favorite meetings as it was very informative.

As a first time Mom, I would have loved to have suggestions / ideas of what activities to do with Megan during her awake time. What toys would benefit her development? How long can I play with her before she becomes over stimulated?

One of the meetings we talked about how to make her NICU stay more personal - bringing in her own clothes, having a picture from home by her bed, bringing her own blanket to drape over the isolette, etc.

dmnicu

Thanks so much for your input-this is all very helpful! It's important to hear what parents have found helpful from their NICU social workers (and what other information would have been helpful).

Thanks for taking the time to help me!

Diane127

My daughter was born at 24 weeks at Gwinnett Medical and they had posted a meeting about a preemie parents support group but when I inquired about it, they said because they had a new social worker starting they were not holding the meetings. Even if they change the social workers I think they should continue to have the meetings. My daugther had many problems in the NICU and was there for over four months and I would have loved to have someone to speak to about it.

Mama_Cyndi

Our NICU had a group that "taught" little classes like "what to do when you take your preemie home" or "infant massage" (which I found totally out of place in the NICU since most of the babies could not be "massaged" because of their skin sensitivities and a mother who can't caress her baby without causing pain is already feeling horrible). I would have liked to have seen more "let's get together, have a cup of decaf and just talk about how we're feeling".

I would also have like to have seen more info on what was actually available as far as help with gas. We were there 91 days and in the last 3 weeks was the first time I heard that there was monetary help available for gas.

On a different note..we were urged to apply for SSI on numerous occasions. Luckily, I called before I went and got enough info from the rep to let me know we didn't qualify so I saved myself a lot of time that otherwise would have been wasted and stolen from my baby. For the sake of giving moms all the time with their babies as possible..give them a handout saying "If you make over ??? amount, you do not qualify", "if you own property, you do not qualify", etc. I know they were trying to be helpful, but more info would have been great.
I did however, enjoy talking to our social workers and chaplains, who were very available for conversation. It was nice to have that person expressing concern or giving that hug. I was concerned though that they had the run of the NICU and could have brought unwanted bacteria and/or viruses into the environment. I had to remind them to use the cal-stat and wipe their chairs down when they left.

calebony

Ditto to the suggestions about aftercare services such as Early Intervention, Respite Care, SSI, etc. I also liked that in my group there was not really a structured agenda. Each week the nurse/sw would ask us how our babies were doing. We could ask questions about procedures (e.g. laser treatment, those horrible eye exams, picc lines, placing feeding tubes/vents, etc.) We didnt have to talk if we didn't want to. We cried, we laughed. We got totally off subject so many times about the news, husband/boyfriend issues, nurses and doctors. That was great because it took our minds off how sick our babies were for just a minute. She also empowered us and let us know our rights as parents in the NICU. You feel so helpless/powerless at times and it was good for someone to let us know that we were important decision makers for our babies. Hope this helps!

29weekevan

My social worker did not give me enough information to succeed at home. I had one social work visit 3 days post-op/delivery. I was groggy on pain pills and mag toxic. I asked questions about my "million dollar bill" and how much of that was true, how much I would have to pay, etc and was told to call my insurance company and ask. To every question I even thought to ask she gave me a phone number of someone to call since she didn't know the answers. Then she said I qualified for SSI, maybe, she thought so, and it would not be based on income, maybe, since my son was born below a certain birthweight that she said was, maybe, 2grams. That if we did qualify, maybe she thought, they wouldn't look at income for 6 mos and I would get about 700$/month during this time and then I wouldn't qualify after that because it would be income based. I had 2 insurances so she said that when you qualify for SSI, you automatically qualify for Medicaid, but I didn't need it.
I went to the Social Security dept at the DMV, and he told me all of my information was incorrect. I did qualify for SSI while my son was in the hospital but it would be reviewed monthly and we wouldn't qualify when we got home. The payment while Evan was in the hospital would have been 30$ not 700$ and would only apply to the one month we had left in the NICU, not for the current month. He said most people apply to get the medicaid and that does last 6 months before they re-eval and look at income. But, I said, I already have insurance, I was hoping the 700 would help me with childcare. He said he couldn't help with that, so I left. I figured my time and all the paperwork wasn't worth 30$ I found out at a post-hospital Pulmonology appt that Medicaid would have payed all my childcare for 6 mos, but since I had left the hospital, we would have to qualify for assistance to get it. I was Really mad. This is thousands of dollars of assistance I would not get because my social worker never "knew" enough to help me. Maybes and I thinks don't help. I ended up getting a social worker to see me while at pulmonology who hooked me up with EI and they helped me fill out an aged and disabled income waiver to qualify for medicaid and Evan was accepted based on medical disability. Many sleepless nights later, I now start back to work Monday and Mediciad is paying a nurse 22$/hr to watch Evan for me in our own home.
My greatest suggestion is to know the facts, know the rules about assistance in your area. Help make those phone calls. Help gather the facts to help take away all that extra worry. I had enough to worry about without all the financial problems.
I hope your patients won't have all these same problems because you knew enough to ask us moms that have been through this "what can I do better".

Nevaeh-113

I wish I would of been made aware of the online support. I was online here and there to pay bills or look up medical stuff. I actually had no idea I could get clothes online that would fit my two pound baby. I wish I would of know what services were out there for me and what to expect. In the NICU your very overwhelmed and these things could of been helpful to me. This site alone I wish I knew about it would of been a great help. I also agree with all the other parents and still know nothing about respite care. I am sure there are other things I still should look into.

NateAndTimsMom

Help with finding (free, low cost, or any) shelter, food, and transportation for those of us from out of town. Making sure we see our babies as soon after they are born as possible--or having a picture (or pictures) brought to Mom ASAP. I think the main thing would be a palce to talk, share experiences, and find out about hospital routines and what to expect. A safe place to vent, cry, laugh, or whatever would have been great! What I would not expect would be someone to fully know the ins and outs of all possible services after discharge--or even some of the ones while the baby is inpatient since many of these programs are very complicated. Simple support to get by from one day to the next is invaluable!

AshSW

I am also a social worker in a NICU. Recently I began a parents support group. The group has been running for about 3 months now. A parents support group has been started at my hospital several times, but has failed due to lack of parent participation. My hospital is in an urban setting and many parents that I work with feel uncomfortable talking about their problems/feelings. In order to have a successful group many ideas were brainstormed. I decided on a NICU Parents Scrapbooking Group. Every Tuesday afternoon our group meets and parents scrapbook while talking about their babies in the NICU. During the meeting I provide them with other information, such as SSI, Early Intervention, community resources, WIC, etc. All our supplies for scrapbooking have been donated by local craft stores. Refreshments are served and parents really seem to enjoy it.
Good luck with your group. I look forward to hearing about it in the future!

FlorinsMom

This is probably not something you can arrange, but I always though that having a massage therapist around would have been the most helpful. A fifteen minute massage after hunching over the isolette and breast pump for hours, day and night, would have helped a lot.

With now massage therapist onsite, our nurses were quite generous with the heated blankets though, they would often bring one for me as well as the baby.

LoveMyBoys

Hi dmnicu - I wanted to ask you which hospital you are at. I had my son at 28 weeks at CLH and was a SW at EUH up until we moved a year ago. I definitely have some input and would love to hear your experiences/ideas. I still have some contacts at EUH which may or may not come in handy... feel free to email me!

ShellyNel

I am an Clinical Social Worker and my twins were 27 weekers. I think a packet of info and deadlines for parents applying for medicaid etc... would be helpful. Individual appointments to help them as well.

I love the idea of your support groups and think our parents here have given great suggestions. Guest speakers at info groups and maybe an Intro to the NICU group would help as well. I felt confused about IF I could talk with other parents, it felt ridiculous to me that I was 3 steps away from another family for 2 months and was not supposed to talk with them. Then when I moved to the lower level NICU, I felt like I lost something (my home where my girls were) excited they moved, but then had to spend two more months getting to know new people, new neighbors, etc...

Also, I was confused about NICU rules. My husband was briefed, but I was bedridden for 9 days after giving birth only on the 10th day did I get to go see my girls. I was in no shape to be proactive...I wish someone would have given me some kind of intro to the NICU, instead I kinda fell between the cracks. I heard of no support groups, no direction to find support either.

I would also have loved to meet the staff that watched over my children. I had one Dr. who was doing a rotation through the NICU who called me to intro himself, and called me from thereon in 1 time a week just to check in. I liked all my other dr. but when they rotated through, I never knew who to contact when I had a question.

Don't get me wrong, I had great nurses and great dr and did find support there. I just think a little more structure would go further to help NICU parents understand what is going on.

Perhaps you could do a suggestion or needs questionnaire for current parents in the NICU. Something short and to the point.

I have thought time and again about quitting my current job and beginning an organization for parents of preemie in the NICU. Still mulling it over and I find it encouraging that you are already on this!

One other suggestion, my pump room at the NICU was not very friendly. Perhaps, if you all have one, having previous NICU parents make it over with positive images and quotes would bring a comfort level there not only to help milk supply, but make the NICU parents who are waiting to go in to see their miracles more comfortable.

I have other ideas, probably too much to write now. Feel free to email me! shellynelodom@yahoo.com
Thanks for asking all of us for input!

dmnicu

Thank you, thank you, thank you! All of this information is wonderful and I feel like it will help me to do a better job in the NICU (which is very important to me).

Thank you all for taking a few minutes to share with me and please feel free to contact me anytime in the future!

skywater07

WOW! I thought that I was the only one who had such an experience. I found out about EI through a friend of mine. (After a few months of paying out of pocket.)

aburris1023

I think that a good rule of thumb with the social workers and new parents is to have more than one meeting. My 26 weeker was in the NICU for 74 days. We met with our social worker twice in the initial phase and then on several other occasions throughout our stay. We had two social workers, one who helped with the transition to the NICU and one who helped with the transition to home. I have to say, I have no complaints. Our social workers were both very well informed and kept us informed. We were encouraged to apply for SSI although we did have really good insurance. We did and the Medicaid helped out tremendously. My daughter was born right before the end of the year so we had to start over with out of pocket expenses. Our discharge social worker had a huge packet of information for us when we discharged. They had already made all of her necessary appointments for the next few months and submitted our information to ECI. I guess that is just depends on the NICU where you are as to what help you get.

So, after rambling I think my best advice for any social and support group would to be sure and follow-up with the parents.

1pair-n-1spare

Hi,
And thank you for asking this question... Too many hospitals forget about the "human" factor of the NICU.
After my Julia (a 27 weeker) was born, I mentioned to the nurses that there should be a voluntary parent-peer that new NICU parents could contact if they had questions or fears (who doesn't) and needed to speak with someone who had been there and done that. Two years after Julia "graduated" from the NICU, Parents As Partners was created. There is a database (of sorts) of Graduate Parents that volunteered to have current NICU parents (who may or may not have the same things happening with their children). It hasn't been wildly popular, but those that have utilized the option to call, have found a caring, supportive NICU Grad Parent who is there whenever they need them.

The program that our NICU has instituted that has been wildly successful in function and support, has been our "Once Upon A Time" Program. This is a donation based program that leaves new NICU parents child appropriate books at the "bed side" of each of their preemies. Each of the books has a letter of sorts pasted into the inside cover of the books. The letter (a brief paragraph or two) is from NICU Grad Parents giving hope and telling a bit about their children, then and now.

The books are more wordy than pictoral, and there are any where from 3 - 5 books left at each bedside bound in pink or blue ribbon.

This program has been in existance going on 3 years now. The books come ONLY from donations from former NICU parents, companies and groups like the West Suburban Massachusetts Mothers of Twins Association, RIF, and other local small philanthropic groups.

The donations from the NICU Grad Parents are gathered once a year at our Annual NICU Reunion (now in its 34 year). This also is a terrific event, that many of our Parents of older Grads connect with newer Grad families. Historically, we have had between 100 and 300 families come back to see the Doctors, Nurses, Respiratory Therapists, MFM's, OTs, PTs, and Social Workers, in a safe, fun evironment for their families.

I have few other things that Parents As Partners has accomplished and put into place over the 3.5 years that we have been in existance. But I don't want to take up the space writing about them here. Feel free to email me privately, and I will list them out for you. Lisa.a.richards@comcast.net

Thank you again, for taking the time to ask this all-important question.

Lisa Richards
Director-emeritus Parents As Partners
St. Elizabeth's Medical Center NICU, Boston MA
Mom to 4 preemie girls
1 w/ wings, 1 on wheels, and twins by TAC

evagracemom

In regards to NICU follow-up, no one ever explained to us that many insurance companies (even really good plans ) DO NOT cover NICU-follow-up therapy. They see it like this (my agent explained to me): if there is no damage yet to heal, it is not a medical expense, even it it may prevent deafness, blindness, etc., in the future, they won't cover it b/c it is therapy for a condition that does not yet exist. We still have appeals at our insurance company, and no social worker or anyone told us this! It's so important for our preemies to get this care.

Add to the discussion

Don't have an Inspire account? Join now!

Forgot password?

Group leaders

You