Ways to Help NICU Parents After the NICU

One of the biggest problems for NICU parents is starting to processes the experience and cope with their NICU experience after they have left the NICU. Dr. Holditch-Davis, professor at Duke University School of Nursing noted in a recent NY Times article,

It may be several months later when they’re ready to process what they experienced, but at that point, family and friends don’t want to talk about it anymore.

Once parents are home from the NICU and the daily activities become more routine, this is the time when many parents finally start processing their NICU experience. Researchers are starting to recognize parents with depression, anxiety and PTSD after the NICU, as noted in the blog post, NICU Admission Puts Parents at Risk for PTSD.

Helping NICU Parents After the NICU

There are several ways to help NICU parents after the NICU to reduce their risks of developing problems after a NICU admission.

• Education: Parents
• Education: Physicians and Health Care Providers
  
• Identifying Symptoms
  
• Support for Parents after the NICU
  

Education: Parents

Part of my hope for the NICU Parent Support Site is that by writing about different topics and different issues facing NICU parents, they will understand more about the normal response NICU parents can face when dealing with the many losses that result from a NICU admission.

Education: Physicians and Health Care Providers As noted in the blog post on After the NICU: Aftercare for NICU Parents, "There are many different physicians and other health care providers who might see NICU babies and NICU Parents in follow up."

The key here is educating all of the different health care providers who see NICU parents in follow up to be able to identify those parents who may be at risk by checking to see that the parents are doing well after they are home from the NICU.

Identifying Symptoms
Researcher and former NICU Parent Dr. Michael Hynan designed a helpful screening tool for determining NICU parents at risk. The Perinatal Posttraumatic Stress Disorder (PTSD) Questionnaire (PPQ) can be easily administered. This tool can help determine if the NICU Parents might need some additional support once the family is discharged from the hospital.

If I was able to do so, I would see that all NICU parents take a PPQ (or similar) screening questionnaire to make sure they are doing well once home from the NICU.

Support for Parents after the NICU - Hospitals
Support for NICU parents can vary greatly depending on the hospital and depending on the nature of their newborn's health. Some hospitals offer good programs after the NICU with support groups, education and follow up. Others (like our hospitals) may be focusing on just getting parents through the initial ordeal.

Often the follow up ball is dropped by the hospitals, because parents are no longer in the NICU and their regular health care providers don't know, or don't think to make sure they are still doing o.k. several weeks or months after the NICU.

Support for Parents after the NICU - March of DimesSome hospitals have a NICU Family Support Specialist from the March of Dimes to help offer NICU parents support and help in navigating the confusing NICU. Their NICU Family Support website offers information, resources and online communities 24/7 online.
Support for Parents after the NICU - OnlineIn addition to the March of Dimes, Share Your Story, there are other online resources available for NICU Parents. These are the main ones that I've found below.

• Share Your Story - Community Center
• Preemie Support Group
• NICU Parents/Preemies Group
• Preemie Community Forum

If you know of others, please add them in the comments section and I can add them to our list of recommended forums.

Resources:

Dyer KA. 2009. After the NICU: Aftercare for NICU Parents. NICU Parent Support Blog.

Dyer KA. 2009. NICU Admission Puts Parents at Risk for PTSD. NICU Parent Support Blog.
Tarkan L. 2009. For Parents on NICU, Trauma May Last. New York Times.
Definition of aftercare. 2007. In Merriam-Webster Online Dictionary.
Dyer KA. 2007. Reflections on NICU Aftercare: Who should following up on NICU parents? NICU Parent Support Blog.
Dyer K. 2005. Identifying, Understanding, and Working with Grieving Parents in the NICU, Part II: Strategies. Neonatal Network. 24: 27-40.
Hynan MT. Perinatal Posttraumatic Stress Disorder (PTSD) Questionnaire (PPQ).

Image: Modified Microsoft Clipart.

Reflections on NICU Aftercare: Who should following up on NICU parents?

According to the Merriam-Webster Online Dictionary, Aftercare is

the care, treatment, help, or supervision given to persons discharged from an institution (as a hospital)

The NICU baby is seen by a pediatrician and possibly specialists depending on the level of care needed. I have often wondered after our NICU adventure, "Who is responsible for the aftercare of the NICU parents following a NICU admission?"


Reflections on Our Lack of Aftercare
Our situation may have been unique because we were patients of one hospital system and transferred to another hospital system, so when all was said and done, the first hospital, not the discharging hospital was responsible for follow up. It could be that we got lost in the follow up.

The situation might have also been unique because I was a physician, but I was still left wondering:

Who should be monitoring the health and well-being of the NICU family and providing aftercare?

This was a question I posed in Part 2 of an article that was published on working with NICU parents. In our situation, we followed up with the pediatrician and a specialist for my daughter and I followed up with the OB/Gyn, however no one asked how we were doing, how we were adjusting to being home or what we were doing to cope. As a former primary care physician, I felt that these were obvious questions that were being omitted.

I became even more concerned, when I started looking at the research and discovered that NICU parents are at risk for experiencing unresolved, prolonged grief and also at an increased risk of developing depression and anxiety-related disorders, including PTSD (Post Traumatic Stress Disorder). My experience left me wondering just how many NICU parents might be slipping through the cracks?

After our NICU experience and because of my background in primary care, I believe that health care professionals need be screening and if need be further evaluating women who have had a baby admitted to a NICU for depression, anxiety, and PTSD symptoms.

A Patient/Parent NICU Support Coordinator
Children's Hospital of Illinois created a new position, the Parent Pathfinder to help NICU parents understand their child's life-threatening disease and care plan and also to get acclimated to what is a strange and unique environment.

The Parent Pathfinder is a similar concept to the Parent Support Coordinator idea suggested by former NICU Parent and Researcher Dr. Michael Hynan. Initially the Parent Pathfinder or Parent Support Coordinator is the person who considers the well-being of the family and supports the NICU parents through their NICU admission. Ideally, this person's role would not end when the baby is dischared, but would continue on for sometime after the admission to ensure that parents are doing well once they are home from the NICU.

This might also be the person to screen NICU parents, with something like Dr. Hynan's Perinatal Posttraumatic Stress Disorder (PTSD) Questionnaire (PPQ) to determine if they might need some additional support once the family is discharged from the hospital.

Sources:
Dyer KA. 2007. NICU Parent Pathfinder - Helping Parents Navigate the NICU. NICU Parent Support Blog.
Dyer KA. 2005. Identifying, Understanding, and Working with Grieving Parents in the NICU, Part I: Identifying and Understanding Loss and the Grief Response. Neonatal Network. 24: 35-46.
aftercare. 2007. In Merriam-Webster Online Dictionary.
Swiech P. 2007.New position will help parents at Children's Hospital. Pantagraph. July 5, 2007.
Dyer K. 2005. Identifying, Understanding, and Working with Grieving Parents in the NICU, Part II: Strategies. Neonatal Network. 24: 27-40.
Hynan MT. 2001. Assisting the trembling hands that hold the tiny hands: Helping high-risk parents improve neonatal outcomes. Paper presented at the annual meeting of the National Perinatal Association, University of Wisconsin Milwaukee. December 2001.
Hynan MT. Perinatal Posttraumatic Stress Disorder (PTSD) Questionnaire (PPQ).