Introduction This presentation is being provided for staff who may be starting a veteran parent program to support FICare The narrative on the slide notes is a guide to help you understand the content of the slides

Engaging Veteran Parents: in providing support in a group setting

What can a veteran parent offer An ear Understand parent perspective Relate as a non-clinician Methods of coping Practical tips Hope An end to potential isolation Provide insight to staff

Who are Veteran Parents ARE NOT: Medical experts Psychologists Cure all’s Work horses ARE Listening ears Crying shoulders Resource centers Guides Confident When to pass along to social worker or manager, identify who you are 4

What Veteran Parents need to know before getting started Boundaries of peer support Support is limited to shared common experience Judicious use of self Confidentiality Member of inter-professional team

Parent group How? What? Who? Where? When? The veteran parent may lead her/his own groups, specifically coordinating various activities that enhances support, I.e crafts, picture frame decorating, lunch/coffee, dad’s getting together. Otherwise it is best to co-lead a group with a staff person, they provide the information and you share your experience i.e. discharge planning. Therefore what information, pamphlets, where, in the NICU, in a classroom, parent lounge, best time of day, and how to connect and ensure parents are aware and able to participate. The support offered is based on the parent’s experience of having an infant in the hospital and following discharge. (The veteran parent does not replace the role of staff). .

“Check-in” before a group session Ask the team leader, social worker or ward clerk about any red flags, major changes or losses Only that might relate to you If possible, check the patient board and patient list Checking in with co leader for any red flags . Changes in situations, background information that maybe relevant to group, i.e. loss of a twin 7

How to encourage parents to participate Do “parent check-in rounds” when you first get to the unit. Inform parents of the group topic, location and food Do a second “sweep” 15 minutes before start time to remind them 8

When to approach at the bedside When parents are not engaged with the medical team When parents are not busy with their baby When parents make eye contact and are open; watch body language Timing is everything, watch body language. 9

How to develop a relationship in a group setting Take a moment and release all personal issues Define your role State how you can help State when you are available Assure confidentiality

Participating in a session Your qualifications are your experience and your ability to listen Remember this is not about you Do NOT give false hope or say “don’t worry” Use your experience and support as it relates to the parents participating in the group

How to briefly introduce yourself My name is _____. I am a veteran parent. I had a baby in here ___long ago, now I’m here on ____days to help support parents because place can be pretty overwhelming! I know when I was in here I felt it really helped me when I talked to other parents who had been through it before and to also go to groups for support and information. Introductions in group: Your story as it pertains to the families in front of you Do you have any questions I can help you with?

How to do introductions and “read” the room Start each session with introductions around the circle as much you are willing to share Assure them they can leave at anytime Make sure parents feel involved and heard Be aware of feelings Repeat names ,make sure parents are heard , don’t let one parent dominate, shift the focus, : I know when I was in here I felt so guilty or scared etc , does anyone else feel that way. 13

What are the roadblocks to communication Advising Judging Reassuring Avoiding change Asking too many questions Veteran parents should never advise, judge, reassure, ask too many questions. Listen, support, provide kindness. Provide EMPATHY & UNDERSTANDING 14

What language works best Watch clarity and speed with which you speak Watch the balance between providing information and allowing others to share Use positive encouraging compliments Use appropriate language 15

How to co-lead a group Make eye contact with co-leader Listen Provide balance Provide your insight: I felt scared, guilty, exhausted etc. when I was in here Steer away from negative conversation The first few sessions are learning curves, listen more and watch the group dynamic. Having a co-leader bring you into the conversation helps i.e.: how was that for you when you were here ? Groups are often co-lead with a NICU health care professional. In some cases, very experienced veteran parents may lead a parent group on their own with the support and guidance of a NICU health care professional. Good examples include: Parenting your baby in the NICU, Taking your baby home, and The first few months at home, Coping in the NICU etc. The health care professional should be present at least at the start of the program to help set up and introduce the veteran parent. 16

How to wrap up a group session Give a 10 minute warning before ending Allow time after group for one-on-one Thank them for coming and sharing Clean up the room, offer extra food to parents/staff

How to debrief post group Connect with the co-leader after group during clean up when parents have gone What worked and what did not Ask any questions Give your feedback then or via email Share your comfort level with the session

The most important piece a Veteran Parent can provide is HOPE!

Coordinators responsibilities to Veteran Parents Provide post/pre-debrief Inform of red flags: losses, social issues Beginning sessions - have a topic, i.e. d/c planning, participate until they get comfortable Follow-up via email, give feedback Provide ongoing support; check-in, clarify what was done if a Mom was upset Thanks and acknowledgement Provide paid parking

Staff acceptance is important! Veteran parents need: To feel they are part of the team To be given feedback Debrief after a group session Its not easy to come back to the unit, It is also hard to know if you are doing the right things if you are not a trained professional. Give feedback, debrief, encourage and be open to new ideas for groups.

Veteran parent tips when engaging with NICU parents Train and role play with the social worker ahead of time Listen Smile and make eye contact Give generic but genuine compliments Refer to baby by name & correct gender Give hope, give your truth, but don’t give promises Use appropriate language Don’t judge Do not provide medical information Understand you can’t fix, but you can listen Create a safe environment to share experiences