England and America are two countries that are separated by a common language, irish playwright George Bernard Shaw once said. According to a new study by the John Hopkins Children’s Center, that common language may also be the divide standing between moms of severely ill babies and the professionals treating them.

A lot of miscommunication between mothers and doctors was commonly found in the study, published in the Journal of Perinatology. However, when they started talking about the severity of the baby’s illness, there was even worse of a communication breakdown.

Even if both the mother and the clinician thought that their conversation went smoothly, misunderstanding was still common. According to the authors, this might be because both parties are unaware of any problem.

Renee Boss, M.D., M.H.S., senior investigator and a neonatologist at Hopkins Children’s Center, pointed out:

“One thing that we, clinicians, must always keep in mind is that talk doesn’t equal communication, and just because we spoke with a parent we cannot assume that our message got across.”

New mothers are already in a fragile medical state, so having a miscommunication with their doctors can lead to serious issues. For example, it can affect critical short-term and long-term treatment decisions or add even more stress.

Stephanie de Wit, M.D., lead author, a former neonatologist at Hopkins, and now an attending neonatologist at MedStar Franklin Square Medical Center, said:

“Poor understanding of a baby’s prognosis can lead to maternal frustration and dissatisfaction with the treatment plan, which ultimately undermines the goal of teamwork between families and clinicians.”

After surveying 101 clinician-mother pairs, results showed, according to de Wit, how important it is for doctors to make sure that the mothers fully understand the complexity of a baby’s condition, to keep communication up to date, and to help caregivers have a more meaningful involvement in their child’s care.

Clinicians, such as nurses, neonatal nurse practitioners, respiratory therapists, and physicians, and English-speaking mothers filled out questionnaires regarding the infant’s condition and prognosis. All babies were treated at The John Hopkins Hospital neonatal intensive care unit (NICU).

Results showed that 92% of mothers and 89% of clinicians said their conversations went well. However the actual results on the surveys showed a big gap between a mother’s understanding and a clinician’s perception about the complexity of the infant’s illness.

The experts explained that even if both parties agree the conversation was productive, it does not mean that the communication was actually effective.

The majority of moms (94 of 101) named one or more of the baby’s diagnoses and treatments. However about half (45%) did not agree with the doctor’s perception of the severity of the disease. Around 63% of moms said their baby was not as sick as the doctor believed.

The mothers of children with very severe or life-threatening illnesses even minimized the complexity of it by saying their children were “not sick,” “pretty healthy,” or “somewhat sick.” De Wit said, “When it comes to discussing a critically ill newborn’s condition, parents and doctors often seem to be speaking the same, yet different, languages.” The author explained how the word “sick” can have very different meanings for doctors and moms. For example, clinicians refer to a “sick” child as one who has a serious illness or disease. However moms tend to say their kids are “sick” only when they see them vomiting, in discomfort, or having a fever.

In order to ensure there is no miscommunication, the experts suggest that NICU doctors and nurses follow the steps below:

  • Be direct and precise about the baby’s illness, treatments, and prognosis
  • Be sure to talk with parents regularly and update them immediately of any changes
  • Define even the simplest terms and diagnoses as specific as possible
  • Stay away from doctor speak, medical jargon, and complex terminology
  • Be sympathetic and warm, they will in turn give their trust
  • Ask mom questions or ask them to summarize after the conversation to make sure they fully understand

Failure to communicate clearly causes all misunderstandings, researchers caution.

Boss concluded, “We cannot exclude the possibility that the sheer force of hope fueled unrealistically optimistic expectations, even when mothers fully grasped the objective reality of their child’s condition.”

Written by Sarah Glynn