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).
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