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.

When to Seek More Help: How NICU Parents Can Recognize PTSD Symptoms

NICU Admissions are a stressful time and even a terrifying experience for all of those involved. Trying to figure out how to manage in a the strange NICU world can be overwhelming for many NICU Parents.

Many parents are able to cope with the additional NICU stressors with a little help, by doing things like becoming an empowered NICU Parent, finding healthy strategies for dealing with NICU stresses and discovering ways of interacting with their NICU newborn.

Some parents continue to find the NICU experience to be an overwhelming one. As noted by former NICU Parent, Kim Roscoe:

The NICU was very much like a war zone, with the alarms, the noises, and death and sickness. You don’t know who’s going to die and who will go home healthy.

NICU experiences can even continue to haunt them once they have returned home with recurring flashbacks and a hypervigilant state. Researchers are slowing realizing (and documenting) that having a child in the NICU puts parents at risk for developing PTSD or Post Traumatic Stress Disorder.

In a recent article by Laurie Tarkan for the New York Times, she summarizes three different types of traumas that NICU parents experience with put them at risk for developing Post Traumatic Stress Syndrome (PTSD):

1. Having an early, often unexpected delivery.
2. Watching your own infant and witnessing other infants enduring traumatic medical procedures and life-threatening events.
3. Receiving serial bad news.
   

The NICU adventure is more like the war zone and unlike other single traumas (like an accident), because the bad news can keep coming again and again, re-traumatizing parents every time there is a setback in their NICU baby's health.

Recognizing PTSD (Post Traumatic Stress Disorder)
The National Center for PTSD reports that there are four types of symptoms for PTSD: reliving the event, avoidance, numbing, and feeling keyed up.

1. Reliving the event (also called re-experiencing symptoms) - Bad memories of the traumatic event can come back at any time resulting in feeling the same fear and horror you did when the event took place. Nightmares and flashbacks may also occur. A flashback is a feeling like you are living through the event again.
   
2. Avoiding situations that remind you of the event - Avoiding situations or people that trigger memories of the traumatic event, even avoiding talking or thinking about the event.
3. Feeling numb - Find it hard to express your feelings.
4. Feeling keyed up (also called hyperarousal) - Feeling jittery, or always alert and on the lookout for danger.

For even more information on PTSD symptoms check the National Center for PTSD Article or the one from the Mayo Clinic.

When to Advise Seeking More Help
Any parent feeling or showing any of the following:

• Prolonged agitation or anxiety
• Depression or extreme hopelessness
• Impaired daily activities or job function
• Suicidal thoughts or ideas
• Extreme physiologic or psychological reactions
• Substantial guilt
• Substance abuse either alcohol or drug use
• Psychotic states
• Uncontrolled rage
• Prolonged, inhibited or absent grieving

Any NICU parent experiencing signs of PTSD or the other concerning signs above for more than a month should seek out their health care provider for further evaluation to help get your life back under control.

Screening for PTSD
A helpful screening tool for determining NICU parents at risk is the Perinatal Posttraumatic Stress Disorder (PTSD) Questionnaire (PPQ) designed by researcher and former NICU Parent Dr. Michael Hynan. This tool can help determine if the NICU Parents might need some additional support once the family is discharged from the hospital.

Resources
Dyer KA. 2009. NICU Admission Puts Parents at Risk for PTSD. NICU Parent Support Blog.
National Center for PTSD. What is PTSD? National Center for PTSD.
Mayo Clinic Staff. 2009. Post-traumatic stress disorder (PTSD) Symptoms. Mayo Clinic.
Tarkan L. 2009. For Parents on NICU, Trauma May Last. New York Times.

Images:
Chris Sternal-Johnson. The NICU Pod. Creative Commons License.
Sanja Gjenero. Helping Hands. Royalty Free Use.

NICU Admission Puts Parents at Risk for PTSD

Former NICU Parent and NICU Researcher Dr. Michael Hynan has been one of the researchers looking at the possibility PTSD (Post Traumatic Stress Disorder) in parents after the NICU. I wondered about the possibility of NICU admissions putting parents at risk after our NICU adventure in 2002, having studied PTSD in other settings.

In the article "Identifying, Understanding, and Working with Grieving Parents in the NICU, Part I: Identifying and Understanding Loss and the Grief Response" published in Neonatal Network in 2005, I expressed some of my thoughts based on the research up to that time:

Hospitalization of a child can be a traumatic stressor for the family. NICU parents are at increased risk of having impaired relationships with the infant along with developing depression and anxiety-related disorders, including post traumatic stress disorder. The ability of parents to cope with the NICU crisis and its aftermath can directly affect the infant’s development.

Parental stress in the NICU has a short-term impact on the establishment of the parent-child relationship, with potential repercussions on the child’s long-term development. Many articles document the psychological, medical, and economic benefits of considering the emotional needs of parents with children in the NICU or PICU.

(See the Neonatal Article for full citations)

Thankfully the research seems to be supporting what parents have known all along about the stressful and traumatic nature of having a newborn in the NICU.

New Findings Acute Stress, PTSD and the NICU
An article published in Psychosomatics in Spring 2009 looked at "The relationship between acute stress disorder and post traumatic stress disorder in the neonatal intensive care unit." The research conducted by physicians and researcher at Stanford University School of Medicine investigated the number of parents experiencing PTSD four months after the birth of their premature or sick infant. They also looked at the relationship between PTSD and acute stress disorder experienced by parents immediately after birth.

At the end of their study they concluded:

The relatively high levels of psychological distress experienced by parents coupled with the potential negative outcomes on the parent and infant suggest that it is important to try to prepare parents for the expected psychological reactions that may occur in the event of a NICU hospitalization and also to support parents during the transition to home care.

Another recent study published in Journal of Developmental and Behavioral Pediatrics was conducted at the Children's Hospital in Los Angeles (University of Southern California). Researchers in this study investigated acute posttraumatic stress symptoms among urban mothers with newborns in the neonatal intensive care unit. They discovered that "having a newborn in the NICU had a significant association with the number of mothers' acute posttraumatic stress symptoms." These PTSD symptoms experienced by the NICU mothers were not fully explained by their symptoms of depression or prior lifetime history of traumatic events.

Ways to Help NICU Parents
Key findings of ways to help parents from the Stanford Study are:

• Preparing NICU parents of what they might experience.
• Supporting NICU parents in the transition home.

The Children's Hospital Los Angeles concluded that addressing acute post traumatic stress symptoms (or education) may enhance interventions to help families of NICU infants, in particular urban families.

So two of the ways to help prevent NICU parents from getting PTSD appear to be through education and support. NICU parents need to be educated about what to expect while in the NICU and what to expect once they are home. In addition NICU parents need to be supported both in the NICU and once they are home.

Sources:
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 May/June 24(4):35-46.

Shaw RJ, Bernard RS, Deblois T, Ikuta LM, Ginzburg K, Koopman C. 2009. The relationship between acute stress disorder and posttraumatic stress disorder in the neonatal intensive care unit. Psychosomatics. Mar-Apr;50(2):131-7.

Vanderbilt D, Bushley T, Young R, Frank DA. 2009. Acute posttraumatic stress symptoms among urban mothers with newborns in the neonatal intensive care unit: a preliminary study. J Dev Behav Pediatr. Feb;30(1):50-6.

Holditch-Davis D, Bartlett TR, Blickman AL, Miles MS. 2003. Posttraumatic stress symptoms in mothers of premature infants. J Obstet Gynecol Neonatal Nurs. Mar-Apr;32(2):161-71.

Image Source: Modified Microsoft Image.