EMDR May Be Effective for Treating Parents’ PTSD

Marisa Wexler, MS avatar

by Marisa Wexler, MS |

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PTSD and sanfilippo syndrome

Eye Movement Desensitization and Reprocessing (EMDR) can help to ease symptoms of post-traumatic stress disorder (PTSD) in parents of children with Sanfilippo syndrome, a case study suggests.

The study, “Reducing posttraumatic stress in parents of patients with a rare inherited metabolic disorder using eye movement desensitization and reprocessing therapy: a case study,” was published in the Orphanet Journal of Rare Diseases.

PTSD is a mental health condition characterized by an extremely strong emotional reaction to a stressful or frightening event that persists long after the event. Common symptoms include flashbacks, nightmares, severe anxiety, and uncontrollable thoughts about the event.

Being the parent of a child with a severe health condition such as Sanfilippo syndrome is inherently stressful. The process of living with a disease is riddled with potentially traumatic events, from the moment of diagnosis to needing to make difficult decisions about what care to provide.

In a recent study in the Netherlands, more than one in five (22%) parents of children with Sanfilippo syndrome met the diagnostic criteria for PTSD. For comparison, the rate of PTSD in the overall population of the Netherlands is 3.8%.

EMDR is an established treatment for PTSD that involves having patients focus on traumatic memories while undergoing rhythmic back-and-forth eye movements, under the guidance of a mental health professional. The therapy aims to change the way traumatic memories are stored within the brain, making them less vivid and emotion-triggering, to ease symptoms.

“Over 30 randomized controlled trials (RCT) have demonstrated the efficacy of Eye Movement and Desensitization and Reprocessing (EMDR) in reducing symptoms of posttraumatic stress,” wrote the team of researchers based in the Netherlands who authored the new study.

“Studies on the clinical utility of EMDR for parental PTSD have, however, not yet been conducted,” they added. “This is remarkable, as parental PTSD also has a significant influence on the psychosocial wellbeing of the child.”

The researchers reported on two parents (a mother and a father from different families) of children with Sanfilippo syndrome who underwent EMDR for PTSD related to their experience of parenting a child with a serious health condition. Both parents’ children were about 10 years old, and had been diagnosed at age 3 or 4.

Both parents experienced extreme emotional reactions related to stressful events in the past — like remembering when their child was diagnosed — as well as “flash forward” events, which is imagining stressful things that are likely to occur in the future. Specific emotional symptoms included abnormal irritability, difficulty concentrating, sleeping problems, and extreme sadness.

EMDR is typically given in weekly sessions, but since weekly scheduling can be logistically difficult — especially for these care-giving parents — the two participants underwent a modified therapy schedule consisting of two 1.5-hour sessions per day for two days.

Both participants reported subjective improvements in their psychological well-being following EMDR.

The father, “felt less easily irritated, tolerated bright light and loud sounds better and was more able to concentrate at work,” according to the researchers. He also expressed feeling “resilient and competent to face future difficulties related to the disease of his child.”

Meanwhile, the mother, “felt more cheerful, was less easily irritated, was able to stop binge eating and managed to finish tasks … and was able to enjoy the interaction with her children,” the researchers wrote.

Both participants also experienced a clinically significant decrease in posttraumatic stress symptoms, as assessed with standardized measurements. The significant decrease was maintained at assessments done several months after EMDR.

No adverse side effects related to EMDR treatment were reported.

“A maximum of four sessions of EMDR scheduled over two subsequent days resulted in a significant decrease of posttraumatic stress symptoms and comorbid psychological distress in both [parents],” the researchers concluded.

They added that the “size and persistence of the effects at follow up in our study are remarkable, especially in the context of the progressive and grim course of [Sanfilippo syndrome], generally causing ongoing daily stress for the whole family.”

The researchers acknowledged this was a very small study, so it’s difficult to draw definitive conclusions. Nonetheless, the results, “should stimulate future studies such as RCTs [randomized controlled trials] to validate the efficacy of EMDR for traumatized parents of children with rare progressive disorders,” they said.