Parents of infants undergoing treatment in hospital intensive care nurseries feel their role in the therapy decision-making process could be improved through more communication and use of simpler terminology, according to a new international study.
Researchers from the University of California, San Francisco headed the study, which included data from seven Pacific Rim countries: United States, Malaysia, Taiwan, Japan, Singapore, Hong Kong, and Australia. In all countries, parents expressed strong interest in wanting to be involved in treatment and resuscitation decision-making for their infants. They also said they felt a joint process was preferable to decisions made solely by the physicians or themselves.
Findings were reported here today (May 14) at the joint meeting of the Pediatric Academic Societies and American Academy of Pediatrics. Study co-directors are Colin Partridge, MD, and Alma Martinez, MD, UCSF specialists in infant care who are based at San Francisco General Hospital Medical Center. Study participants were 361 parents whose infants had been patients in a neonatal intensive care nursery (NICU). All the infants weighed less than 3.3 pounds and had been born prematurely. The U.S. participants were in California.
The research focused on the level of satisfaction that parents experience in their interactions with physicians and other staff in the NICU, how parents view their role in regard to decisions about treatment, and if parents feel their participation in this role could be improved.
"As neonatologists, we need to be more sensitive to parents' rights in the nursery and involve them more along the way in the care choices about their child. That's what this is all about," said Martinez.
The researchers chose to include several Pacific Rim countries in order to assess cultural variations in physician counseling with parents and in decision-making for infants born at the margin of viability, according to Partridge. In particular, the research team was interested in the East-West differences in countries with NICU technology that offers the possibility of life support for extremely premature infants, he said.
Study results showed the majority of parents in all countries felt that discussion on the important aspects of therapy was adequate, but they also suggested communication could be improved through:
- More interaction between NICU staff and parents.
- More information using simpler terms about their infant's condition, treatment interventions, and potential outcomes; language interpreters if necessary; and availability of written information on diagnoses and outcomes. Other study findings include:
- After participating in physician-counseling, the majority of parents said they expected some type of complication to occur, perceived their infants' outcome better than previously thought, and understood the prognosis.
- Even after physicians counseled parents about the improved survival rates for very premature infants, a significant proportion feared their child would die in the NICU or at home after discharge.
- In Singapore and Malaysia, parents more frequently reported discussing religious issues with physicians during counseling.
- Parent-physician discussions in California, more than in other countries, were more likely to address the process of disease and the emotional attachment between parent and infant.
- Medical factors and parental emotional attachment influenced resuscitation decisions, while financial or religious concerns rarely did.
- In all countries, actual decision-making typically involved some physician-parent collaboration. In Japan and Australia, however, a majority of parents perceived that decisions were made solely by physicians.
This is the third phase of a research project in these seven countries. Previous studies looked at the mortality and morbidity of infants in NICUs and how physicians view their interactions with parents and the degree that they involve parents in treatment decision-making.
Study co-investigators were N.Y. Boo, University Kebangsaan Malaysia, Kuala Lumpur, Malaysia; J.H. Lu, Veteran General Hospital, Taipei, Taiwan; H. Nishida, Tokyo Women's Medical College, Japan; K.W. Tan, Kandang Kerbau Hospital, Singapore; C.Y. Yeung, University of Hong Kong; and V. Yu, Monash Medical Center, Clayton, Australia.
The study was funded by the University of California Pacific Rim Research Program.
Note to the media:
The joint meeting of the Pediatric Academic Societies and the American Academy of Pediatrics will take place May 12-16 at the Hynes Convention Center in Boston. The Press Room phone is 617-954-2521.
For assistance in arranging an interview with Dr. Colin Partridge or Dr. Alma Martinez, contact Corinna Kaarlela in the UCSF News Office at 415-476-3804.