Parent support

Burnt Out, ASN, RN · Oct 26, 2003

I am not a NICU nurse, but last year after my son was born and in the NICU...they did not have a support group for the parents. I think this is a great idea.

Ginger

kitty29 · Oct 27, 2003

And I see you're baby is a Real cutie! Thanks for your comment from your perspective esp.!

I'm surprised more nurses haven't commented yet....maybe this is an issue in the NICU that Really needs attention! We have a unit counsil and I think I will submit the idea and see what kind of a responce I get.

Now when having such a thing....what do think....should one have a topic maybe at the start of the month with a staff member. If a staff member is there should it be other than nursing? I wouldn't want to have parents feeling uncomfortable to talk because a staff member was there...ya know?

So If you had an intial topic meeting and than parents could meet on their own as they wanted....weekly or whatever. Than in have another meeting with a topic/staff member......and so on???

What do you think?

Burnt Out, ASN, RN · Oct 28, 2003

I think having a monthly meeting would be good. If possible, I think one of the NICU nurses should be there for a little bit to answer question and probably someone from Social Services be present to act as a facilitator.

As with any support group.."what is said in group, stays in group."...No hard feelings if a parent has an issue with a particular nurse or MD.

NICU_Nurse, BSN, RN · Oct 28, 2003

I think this is a wonderful idea; we don't have such a thing but I can definitely see us doing something like this in the future.

One thing to consider is that you'll constantly have new moms joining- babies are born every day, and that should be kept in mind when deciding which topics to discuss.

I have led preceptor-attended therapy groups for anger and depression management at a health center- we worked with mentally ill people, general depression, and in conjunction with the HIV clinic for those who were recently diagnosed with HIV/STD's or those coping with those types of illness, both with their family members and/or themselves. I also worked with a group of amazing women at a local shelter here (this was long before I started nursing school, when I was investigating my options) in a group held weekly to deal with issues related to domestic abuse and addictive relationships/emotional behavior.

I've found that it's not difficult to get things started if you stick to basic, universal topics- specific interests will come up as you go along. It's new to them (the group) and it's new to you, and there's no shame in saying that out loud. I always tried to remain flexible- sometimes we would start out with one topic on the board and end up moving to something entirely different by the end of the sessions, and this is okay. Groups are not for those bound by structure! :)

What you might want to do, to gauge interest, is get permission from the higher-up's to hold a test session. Design a questionnaire, hand it out to new mom's when they're in PP, perhaps mail a few to mom's you've had in the unit who might be interested in such a thing. You'll have to figure out how many people might be interested- it makes a huge difference in the structure when you're dealing with 10 moms and a moderator vs. 50 moms and only one moderator/leader. For larger groups, it might help to break into smaller groups, each with a leader. Eventually you may want to appoint moms to lead the groups with the assistance of one leader (peer-led groups vs. staff-based groups) that have been ok'd to represent the hospital.

So, hand out your questionnaire. Gauge the responses- how many people are interested? How likely are people to come out to the hospital vs. holding them for inpt. moms primarily (who are already AT the hospital and thus won't need to travel for the meetings?). You're going to find a lot of diversity in the types of things that people will want to talk about- some will want to talk about losing a baby, some will want to talk about the particular disability their child may be affected by, some will want to just reach out to other moms for support having a new baby in a household, etc. They're all going to have different needs, so you'll need to have a scope as to how much and what type you can fit into a single session. Your first session could be as simple as gathering new moms together while they're inpatient and spending an hour asking them questions and encouraging them to talk about their experiences with the hospital, what their needs are, etc. Take those answers and then work on your next session- maybe pick four topics with a lead topic to start with and then you'll just have to wing it.

The only problem with having a group with discharged moms is that they have to find a sitter and have the time off to spare to come out to the hospital. This can be impossible for some, so I'd say you're safer (to start, anyway) just focusing on the inpt moms and maybe putting up a general notice saying that others are invited to come as they wish. That way you won't have a problem with no one showing up for the group that you've scheduled. Most new moms are eager, anyway, to meet each other, brag about their babies, and do something besides sit in their room while they're inpt. If nothing else, you're providing a wonderful opportunity for them to network (I've seen other hospitals hold new mom lunches/brunches/coffee and cake services where the general public as well as inpt moms are invited to come and chat with each other and socialize with their babies).

You'll have to see what your hospital/unit is willing to put up for this- will they have a space for you? How big is it? Is it free? Will they provide food? Coffee? Can you get it sponsored by someone? Is this for education (where you could have specific topics and handouts) or for socialization? Contact your education department and see how they run their other groups (many hospitals hold AA, OA, AL-Anon, etc. meetings- you could sit in on a couple of these to get a feel for how they go, and then ask the leaders of those groups for suggestions).

NICU_Nurse, BSN, RN · Oct 28, 2003

Oh, one more thing- if your hospital doesn't go for it, there is absolutely no reason that you cannot do this on your own. Check out the YMCA or local community spaces (parks/playgrounds that have rooms for rent for a small fee), call the March of Dimes or other local volunteer organizations, and tell them what you want to do. Often they are full of ideas and always welcome people interested in helping the community. Then, once it is established, you could have your unit approve a flier to give to new moms telling them about it and when and where they meet. This way you are not directly representing the hospital (you could say "led by an RN" but not "led by a Such-n-such Hospital RN" or not "affilliated with Such-n-such Hospital"), and that would eliminate (I think) the whole privacy issue. You could simply have a volunteer list at each group where people could sign up to have their information given out to new moms, or let them handle it on a one-to-one basis.

kitty29 · Oct 30, 2003

Thanks guys....I'm doing copies of all your suggestions....in order to submit stuff and work on it more formally.

fergus51 · Oct 30, 2003

We have parent group meetings once a week, run by a nurse whose only job is parent resource person (she does not work on the unit). We also have a buddy program with past moms and dads and new ones in similar circumstances.

The parent group has weekly topics (like developmental care, taking your baby home, etc). It is great for education and most parents enjoy them. There are some negative aspects I hope you'll consider and plan for better than we did. For example, parents need a medical person to explain things to them FULLY. Our parent group was told about ROP and oxygen, which is fine. But then some of them were so focused on ROP that they would freak out if a nurse turned the O2 up on a baby who was satting 62 and not coming up alone (we have to remind them that brains are just as important as eyes). If you are going to give them information, it can't be only part of the picture like this or it causes trouble. The same thing happened when infection control told them that babies get infections because nurses don't wash their hands enough:( You need to make sure that the info going out is appropriate, honest and complete.

kitty29 · Oct 31, 2003

Good points....it's very helpful to learn of the struggle factor....Thank you....

NicuGal, MSN, RN · Nov 5, 2003

We have one that meets once a month. It is run by one of our social workers and our CNS. With our demographics it isn't very successful.

eor'spal · Jan 24, 2004

We have a wonderful parent support network that is run by parents. I worked with them while I was in school, and am planning to undergo training as a support parent (we had a 35 weeker). They go to all of the local NICUs, and set up interested parents with a family who underwent similar experiences. (Multiples, high-risk pregnancy, bed-rest, same gestational age infant, young parents, single parents, professional parents, etc etc). It is a fantastic group, and I think part of the reason it works so well is that the parents talk only as often as they need to! For example, if the baby(ies) is having a particularly rough day, the parent may need more support than if it's a good day. There is no set meeting time they must make it to, and above all else they are talking to someone who has been there! It's called the Neonatal Parents Network, and they also do fundraising and support for staff, physicians, etc. The questionairre is in every baby's discharge folder, but I wish more of our nurses presented it early on! Good luck! :)

LauraF, RN, ASN, CNA, LPN, RN · Jan 24, 2004

I am a mom of a former 24 weeker. There was no sort of support group at the hospital I was at either. What I found that helped me the most of a group of parents online. I now actually moderate the board. It is http://groups.yahoo.com/group/preemiesorg/ I have found so much support there. I am now able to give more support back to the new mom's. It is so very overwhelming once you get your preemies home, and for the most part you are on your own, with noone to turn to. I remember right after I brought my daughter home she weighed 3lb 10oz. They told me if she started filling her ostomy bag too fast she need to get to the ER. Well to go to the ER I had to get authorization to go. I called the "special care doctor" who was suppose to be taking care of her. They said "oh we can't page her, you have to wait for office hours." So I ended up going through my pediatrician who had not even seen her yet. It is a very stressful time. :eek: