'It makes you feel like your role is important,' mom says of her NICU care of twins

A Canadian-led study proves that keeping parents close to their newborns in the intensive care unit improves the wellbeing of infants. And mom and dad benefit, too. 

The neonatal intensive care unit (NICU) is a place for the sickest and most vulnerable infants. Now a randomized trial testing a program piloted in Toronto proves the benefits of having parents as part of their care team.

The study was published in the medical journal The Lancet Child & Adolescent Health. Dr. Karel O’Brien of the pediatrics department at Sinai Health System and her colleagues across Canada, Australia and New Zealand compared when parents participated versus standard NICU care.

Baby Jackson

Baby Jackson in the neonatal intensive care unit at Toronto’s Mount Sinai Hospital. He was born at 23 weeks and five days. (Craig Chivers/CBC)

They measured:

  • How newborns gained weight.
  • How long infants exclusively breastfed.
  • Parental reports of their own stress and anxiety.

“Parents should really not be seen as visitors in NICUs but as an active part of the care team,” O’Brien said, because parents provide such a constant and secure environment for infants, even in the NICU.

Amy, who did not want her last name used, and her twins, Jackson and Paisely, are in a family integrated care program at the hospital.

‘Means a lot to me’

“It makes a huge difference,” she said last week. “I haven’t been able to really do very much. But being able to do those things, it makes you feel like your role is important.”

Amy says tasks such as changing diapers, taking temperatures and measuring oxygen levels gives her a sense of purpose, instead of just sitting in a hospital room.

Dr. Karel O'Brien

Parents shouldn’t be seen as visitors in the NICU but active members of the care team, says Dr. Karel O’Brien. (Craig Chivers/CBC)

“Being proactive at the same time in an environment where you have little control this is like the one thing that we have so it means a lot to me.”

Amy’s experience helped to spot an early infection. She alerted medical staff.

The researchers say the findings should challenge the existing dogma that says parents should stay on the periphery of their infants’ care in the ICU.

“Initially when I approached mothers to participate in the study, the mothers would always say, ‘You want me to be a mother? You want me to be a parent?,’ O’Brien recalled. “I would look at them and say, ‘But you are a parent.'”

To participate, parents had to commit to spend at least six hours a day, five days a week at their infant’s bedside to give extra tender, loving care to their baby.

Baby Jackson's hand

Parents were encouraged to chart their infant’s growth and progress. (Craig Chivers/CBC)

Hospitals needed to provide families with a place to sleep, comfortable reclining chairs at the bedside, free parking, and have nurses trained in family support.

As part of the research, some parents also performed activities such as giving oral medications and changing dressings. They were also encouraged to participate in ward rounds and to chart their infant’s growth and progress.

Important beneficial effects

At 21 days, infants in the integrated group had put on more weight and had higher average daily weight gain (26.7g compared with 24.8g), compared to those in the standard care group.

A journal commentary, titled “Family integrated care for very preterm infants: evidence for a practice that seems self evident?” commended the researchers for achieving a “remarkable feat” in testing the care program in such a robust manner.

Chris Gale of Chelsea and Westminster Hospital at Imperial College London said the benefits are important but they need to be interpreted cautiously since factors such as parental commitment could be important and weren’t measured.

The next step is to look at longer-term outcomes for the children, perhaps at school age, O’Brien said.

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