This moment is met with great joy combined with a bit of fear and dread, since suddenly now you will be on your own with your NICU baby at home.
After the NICU
Follow up or Aftercare is monitoring the health and well being of the NICU family after the NICU admission. 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)What I didn't realize at the time and did not discover until I was researching for the articles for Neonatal Nework is that NICU Parents are at an increased risk for experiencing a variety of disorders and responses...after the NICU.
NICU Parents are at risk for experiencing depression, post partum depression, post traumatic stress disorder (PTSD), anxiety disorders and a prolonged grief response.
Concerns about Follow Up
Since finding out the NICU parents are at risk for developing several different conditions and reflecting on our own NICU follow up, I have been very concerned about the aftercare (or lack of aftercare) that NICU parents receive following a NICU admission. As noted in the recent article on PTSD and the NICU by New York Times author, Laurie Tarken:
Experts say parents who are at risk for post-traumatic stress should be identified ahead of time and given help to prepare them for dealing with the initial trauma. But many hospitals are focused on saving the infants, not the emotional crises of the parents.Research has been done demonstrating that organized family support program could aid in maintaining family stability during the newborn’s intensive care hospitalization. Other studies have shown that new NICU mothers paired with former NICU parents had less anxiety and depression, and more social support, than mothers who did not have a NICU parent 'buddy.'
So what can be done about providing aftercare for NICU parents?
Aftercare for NICU Parents
From my perspective as a primary care physician and former NICU parent aftercare for NICU parents should be provided by any professional seeing a parent or a baby in follow up from the NICU hospitalization.
There are many different physicians and other health care providers who might see NICU babies and NICU Parents in follow up. The health care providers include pediatricians, obstetricians and gynecologists, urgent care physicians, emergency room physicians, internists (adult medicine), nurse practitioners, nurse educators, physician assistants, social workers, mental health counselors and clergy.
The key is getting the word out to the right groups. As I wrote in the NICU article that was published:
NICU physicians and nurses may be aware of the research supporting preventive or postnatal intervention, but they generally are not the ones following up with the family. Conversely, the obstetricians/gynecologists, pediatricians, family practitioners and nurse practitioners who are providing the follow-up appointments may not be aware of these NICU studies.Those who may see NICU parents in follow up, the the obstetricians/gynecologists, pediatricians, internists, family practitioners and nurse practitioners need to know about the risks that NICU parents are at for different.
Articles like the recent one in the New York Times will go a long way in helping get the word out to main stream, so NICU parents and friends of NICU parents will be more likely to know about the risks that can occur, after the NICU.
I'll be looking at other ways to help NICU parents in a later post.
Dyer KA. 2009. When to Seek More Help: How NICU Parents Can Recognize PTSD Symptoms. 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. 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).
Image: Home-Sweet-Home Glass Plaque. Available on Amazon.