SciWorks Radio is a production of 88.5 WFDD and SciWorks, the Science Center and Environmental Park of Forsyth County, located in Winston-Salem.
Learning of a pregnancy is usually a joyful experience, but learning of a “lethal fetal diagnosis,” a baby with no chance of survival, can be devastating. For various reasons, some parents make the usually-painful choice of keeping the pregnancy. To help improve patients' experience, Denise Côté-Arsenault, Professor and Department Chair of Family and Community Nursing at the UNCG School of Nursing, conducted a psychiatric phenomenological study of 16 sets of these parents.
This type of study observes the behavior of someone in a particular experience, with a focus on the patient's point of view.
Our goal really has been understanding their experiences during the pregnancy, what it was like for them, interacting with healthcare providers so we can improve healthcare in the circumstance of these pregnancies.
The study found three identifiable phases.
Learning the diagnosis phase: they really were trying to understand what is really wrong with my baby. And, their developmental task, which is really what we were looking for, was trying to comprehend the implications of that diagnosis. So, “why can't my baby live with this diagnosis?” Once they got through that point, they went to the next stage which was Living With Diagnosis. It was continuing being pregnant, going for prenatal care, going to work, knowing that their baby was not going to survive. So what they then needed to do was to revise their goals for pregnancy. They wanted to make the most of the time with their baby, and they did that in a variety of ways: feeling the baby move, watching the baby on ultrasound. As the pregnancy proceeded, there was the reality that they needed to make some decisions. How are we going to deliver this baby, what's the timing of that delivery going to be? What do you want to have happen during that delivery? And what do you want to have happen after the baby is born?
According to Côté-Arsenault, prior to the “Learning the Diagnosis” phase parents are not ready to comprehend the outcome, leading to their own frustration and that of the doctors confronting them with expectations for the end of pregnancy. The study suggests that healthcare professionals can change this dynamic by, surprise . . . listening to the patients.
What we have learned from these parents is to see what their needs are and what their focus is at time, and then match the care. They very quickly move from task to task even within one visit, if in fact the care providers were listening to them and really cared about what their needs were.
When reaching conclusions on their own, all arrived at the same basic needs.
What was really their guiding goal was to have no regrets. and to really feel that they had done the best by their baby. So they prepared by writing a birth plan, by advocating for their baby with integrity based on their their own values and beliefs, with the help of health care providers giving them information.
In the final stages parents were better equipped to deal with this tragic event.
In that last stage of post-death adjustment was the grief and how to remember their baby. Some of it was funeral planning, some of it was what memorial. Many of them put photographs of their babies on the wall with their other children. All of those who knew for sure that their baby was going to die, without any question, went through all these stages and had these developmental tasks that they really needed to follow through. You can't change what's happened with that baby, but you can have a very big impact on the experience of the parents and having this be in many ways a positive experience and a growth experience. Not a totally devastating experience. And we found that many of the families had very joyful births. They were just thrilled to meet their babies. I think that's what care providers need to do. Help them grow from the experience and recognize that their grief is normal but that it's ok to put an ornament with your baby's name on your Christmas tree as a way of honoring that baby and having that baby continue to be part of a family.
This Time Round, the theme music for SciWorks Radio, appears as a generous contribution by the band Storyman and courtesy of UFOmusic.com.
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