Surviving a Child’s Death

There may be no greater strain on a family than the death of a child.

Yet hospitals, doctors, and nurses are often ill equipped to help surviving family – mothers, fathers, brothers, sisters and grandparents – cope with the overwhelming emotions and stress.

In fact, FIU nursing professors JoAnne Youngblut and Dorothy Brooten found during their clinical nursing careers, hospital staff often ignore, fail to address or inadvertently increase a family’s pain instead of pointing its members toward healing.

“There was one family I remember where a pediatrician told a mother whose 3-year-old had just died, ‘You should forget about this child. You’re young and you can have more,’ ” recalls Youngblut, who spent her clinical nursing career in the pediatric intensive care unit. “She had a hard time dealing with that.”

Divorce, suicide, mental illness and other suffering are common in families whose child has died.

“Having a child means many things to parents, representing a piece of themselves and their legacy,” notes Brooten, whose clinical roots are in high-risk pregnancy and high-risk newborns. “For some who have worked hard to become pregnant, who dreamed about the child’s future, and now are faced with a dead or dying newborn, the situation is devastating.”

As faculty in the College of Nursing and Health Sciences, Youngblut and Brooten have been awarded more than $5 million in funding from the National Institutes of Health to enable three related studies that aim to understand how the loss of a child affects families. Brooten and Youngblut anticipate their findings will help to improve the national and international standard of care.

“This body of research will provide direction in who needs help most, what type of help and when,” Brooten says. Youngblut adds, “We expect our findings from this study will help communication among family members and with healthcare providers.”

Bala Totapally, associate director of pediatric critical care at Miami Children’s Hospital, says the research is crucial.

“Although we have reduced the mortality of pediatric patients, unfortunately still kids sometimes die,” he says. “Nobody expects their child to die before them. That has a lot of psychological effects on a family. This research will help us understand how families deal with that and help us mitigate their pain.”  

Brooten and Youngblut’s latest study has identified 188 families whose children died in a neonatal or pediatric intensive care unit at four Miami-area hospitals, including Miami Children’s. Researchers interviewed each family soon after the death and remained in touch with them over a 13-month period to study their bereavement process, mental health and such aspects of daily functioning as family interaction and communication, parenting and handling household responsibilities. They also looked for behaviors or other warning signs hospital staff can observe as earmarks of families likely to have particular trouble.

“We are reading through the qualitative data now,” says Youngblut. “They are very in-depth interviews of individual parents. Some of them are two or more hours long. It’s a body of work that no one else has. Most research in this area has been a collection of isolated studies relying heavily on parents’ recall of memories years after the death and without follow-up over time. With these studies, we can provide a better picture of what happens over time.”

After analyzing the data, the researchers will publish their findings in scientific journals, where their work can benefit other researchers and help to change practices in hospitals.

“Once the findings are published, we will present recommendations for care of families at conferences and share them with healthcare providers in hospitals and other settings,” says Youngblut, adding that the work will inform education for nurses, physicians, psychologists, social workers and others who provide care to parents who have lost a child.

Before joining FIU’s College of Nursing and Health Sciences, Brooten was dean of the School of Nursing at Case Western Reserve University, where Youngblut was associate dean for research. In 2001, the two began a private research consultation company, of which FIU was a client. While visiting campus for that work, they both saw huge opportunities at FIU and ultimately agreed to join the faculty.

“When we came here and saw the research potential in [what was then the] School of Nursing, the university and the area community, it was very exciting,” says Brooten. “We were being recruited by other institutions in the area and decided FIU was where we wanted to be.”

South Florida is an ideal place to conduct the research, they add, because of the racial and ethnic diversity of its residents. They are conducting interviews with families in both English and Spanish and have NIH research funding to examine a diverse group of families and determine the role of cultural factors in families’ responses to a child’s death.