New Approaches Needed to Reduce Stress in Parents of Babies With Cardiac Defects

Researchers look for ways to reduce parent stress after neonatal surgery

shafere1 [at] email.chop.edu (By Emily Shafer)

Even under the best circumstances, bringing home a new baby can be stressful. Now imagine bringing home a baby who underwent neonatal cardiac surgery and requires extensive care after discharge from the hospital.

Researchers at Children’s Hospital of Philadelphia studied the effects of an intensive telehealth home monitoring program for infants recovering from cardiac surgery on their parents’ stress levels. The REACH intervention included daily text messages inquiring about the infant’s status, and twice-weekly videoconferencing with an advance practice nurse (APN) for four months after hospital discharge.

“We did not make a difference to the parents’ stress, and the reason was pretty simple: We couldn’t decrease stress when the stress was continuous,” said Barbara Medoff Cooper, PhD, RN, a nurse scientist at CHOP and a professor of Nursing in Pediatrics at Perelman School of Medicine at the University of Pennsylvania. “We were able to help decrease stress in the moment when there was a problem, but the stress relief did not last.”

The study, which appeared in Pediatrics, included 219 parent-infant dyads who were enrolled at three university-affiliated pediatric cardiac centers from 2012 to 2016. The dyads were randomized to the intervention group or the usual care group. All families were discharged from the hospital with a digital scale, pulse oximeter, and access to an online educational website. The caregivers measured their infant’s weight, caloric intake, oxygen saturation, and heart rate daily.

The APNs at each site were notified automatically by text when participants in the REACH intervention group reported the infant data. If the data included “red flags” that indicated a significant change in the infant’s status, the APN contacted the parents.

The study team found that at four months after hospital discharge, there was no difference in parental stress between the groups, and the same percentage of parents (18%) in each group met criteria for post-traumatic stress disorder. Infant growth in both groups was also suboptimal – overall, 30% of infants exhibited growth failure at the end of the study, and there was no difference between the treatment groups. In addition, more infants in the intervention group (66%) were readmitted to the hospital compared with the control group (57%).

“It was discouraging that we could not change the outcomes of some babies, and that there was still post-traumatic stress despite the fact that we were talking to the parents twice a week,” Dr. Medoff Cooper said. “One of the other outcomes is the knowledge that we need to think about other ways to help parents deal with the stress of having a baby in the ICU, and then going home with all of the issues that these parents have to deal with.”

Amy Jo Lisanti, PhD, RN, a postdoctoral nurse scientist in the Cardiac Center who Dr. Medoff Cooper advises, is looking at biological markers of stress to see whether it is possible to identify which parents are at higher risk for stress. She is also measuring depression in these parents. In addition, Dr. Medoff Cooper is looking to see if the REACH model would help the families of children with cancer deal with stress.