Research on Parents of Children with Medical Complexity and/or Trauma

Many of you who follow this blog know that I have written extensively about my own, personal experiences with our medically complex son. (Some of the posts, for background pertaining to this post are HERE, HERE, and HERE.)

That said, it was so wonderful to read the NY Times article entitled, “Haunted by a Child’s Illness” which reports on recent research that could be very insightful to anyone in the field of pediatrics. It feels like a direct answer to my post: A Request for Research on Parents of Medically Complex Kids.

The article discusses a recent study done by Dr. Kassam-Adams, from the Center for Pediatric Traumatic Stress at Children’s Hospital of Philadelphia. Her study found that about 1 in 6 children and 1 in 6 adults suffer from significant post-traumatic stress symptoms. So, while these kids and parents have made it through their illnesses/traumatic events –many are often reeling from them even years later.

Anne E. Kazak, a pediatric psychologist, makes a very helpful analogy (normally used for parents of children who have fought and beaten cancer, but I think it can apply to anyone who has been through a traumatic medical situation with their child). She compares the event(s) to a war: a battle(s) that the child and/or parent has fought and now they are suffering the post-traumatic stress of those battle(s). Many parents can experience racing hearts, flashbacks, nightmares and the feeling of always waiting for “the other shoe to drop.” This last one, is the one I relate to most. So much so, that my husband has nick-named me Worse-Case-Kate. My son can sniffle his nose and I am instantly making a list of things to take to the ER, seeing what I might have to clear from my schedule, getting out the thermometer and a notebook to chart his temps.

The Times article goes on to discuss another great study that tried various interventions with parents of premature babies to reduce their long-term anxiety and depression.

I can only hope that this kind of research continues and that infrastructures and protocols are established in ERs and children’s hospitals to screen for and/or pre-empt parental post-traumatic stress.

For further discussion of this topic, you may also find interesting:
Can the ICU Cause PTSD?