AUSTIN, Texas—A new method to strengthen parent-professional collaboration when making difficult decisions about how aggressively to treat extremely premature infants has been successfully tested by a University of Texas at Austin nursing researcher.
Dr. Joy Penticuff
Concluding a five-year National Institutes of Health study, Dr. Joy Penticuff found that most parents of extremely premature infants in neonatal intensive care units have difficulty comprehending complex medical facts and feel they are not to able to make informed decisions about high-tech neonatal intensive care.
As part of the research project, some parents participated in an intervention, filling out their own infant progress charts and attending care planning meetings. The intervention was created by Penticuff to help parents better understand their infants’ condition and participate more effectively with medical professionals in the decision-making process.
The intervention group was more satisfied with the process of medical decision making and with the amount of decision input they had than were parents in the usual care group. The intervention group also had less decision conflict and fewer unrealistic views and uncertainty about their infants’ medical condition.
“Parents who have extremely premature infants at the margin of viability often have many questions about their infants’ survival and normal development,” said Penticuff, who is teaching two health care ethics courses this semester. “But it usually is difficult for parents to be informed enough to have input into decisions about aggressive high-tech treatment.
“Those of us in the professional area need to listen to parents and see how we can really help them understand their baby’s condition.
“Parents routinely are given a myriad of technical details about their infants’ current treatments and responses to therapy, but lack an organizing framework within which to interpret this information,” said Penticuff.
Scheduled Care Planning Meetings provided opportunities for parents to discuss medical information, treatment options and probable outcomes with their infant’s neonatologists and neonatal nurse practitioners.
Results of the study also will have significance for other areas in health care like those involving the treatment and care of critically ill adult patients, said Penticuff.
“Changes in the structure of health care are making it increasingly important for lay persons to participate in health care decisions and to understand medical information required to make informed choices,” she said.
Parental input into treatment decisions for their extremely premature infants in neonatal intensive care units (NICUS) is both a legal and ethical imperative, said Penticuff, adding that some premature babies are in the hospital for up to nine months at a cost of $1,000 a day.
The area of decision-making in a neonatal intensive care unit has gone largely unexamined until now, said Penticuff.
“In fact,” she said, “there has been no systematic study of the process by which parents and professionals collaborate in face-to-face discussions about infant treatment in NICU.”
The study, funded by a grant from the National Institute of Nursing Research of the National Institutes of Health, was conducted at the Seton Medical Center Neonatal Intensive Care Unit and Children’s Hospital of Austin Neonatal Intensive Care Unit.
Holder of the Lee and Joseph D. Jamail Endowed Professorship in Nursing and member of the university’s Academy of Distinguished Teachers, Penticuff has presented preliminary findings from her study at the New York Academy of Medicine conference in New York City. She is announcing final conclusions this month.
“Survival rates of extremely premature infants have increased dramatically in the last 10 years,” said Penticuff. “But, for some of these infants, aggressive medical technology merely prolongs dying, and for others, survival is accompanied by significant developmental impairment.”
In her research, Penticuff worked with parents, nurses, physicians and administrative personnel to find better ways to enhance parents’ abilities to participate with professionals in treatment decision-making. A tri-ethnic sample of parents of 154 infants was recruited and the impact of psychological, sociological, cultural and ethical factors was examined.
Half of the parents were in the usual care group and half participated in the new intervention where babies were significantly smaller and sicker than in the control group. The mean birth weight for control group infants was two pounds, six ounces as compared to one pound, 14 ounces for the intervention infants.
In designing the Infant Progress Chart for the intervention group, Penticuff wanted to increase parents’ understanding of relevant medical information. Parents learned the meaning of medical treatment terms such as jet ventilation, oxygen by hood, gavage feeding, hyperalimentation and medical complications terms such as bronchopulmonary dysplasia and apnea. Parents used a structured graphic format that allowed them to chart their infants’ responses to treatment across all major organ systems.
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