Pacific Rim Research Program

Pediatrics. 2005 Aug;116(2):e263-71. Related Articles, Links

International comparison of care for very low birth weight infants: parents' perceptions of counseling and decision-making.

Partridge JC, Martinez AM, Nishida H, Boo NY, Tan KW, Yeung CY, Lu JH, Yu VY.

Department of Pediatrics, University of California, San Francisco, CA 94110, USA. cpartridge@sfghpeds.ucsf.edu

OBJECTIVE: To characterize parent perceptions and satisfaction with physician counseling and delivery-room resuscitation of very low birth weight infants in countries with neonatal intensive care capacity. STUDY DESIGN: Convenience sample of 327 parents of 379 inborn very low birth weight infants (65%) of parents in all centers felt that they understood their infant's prognosis after physician counseling. The proportion of parents who expected long-term sequelae in their infant varied from 15% (in Kuala Lumpur, Malaysia) to 64% (in Singapore). The majority (>70%) of parents in all centers, however, perceived their infant's outcome to be better than they expected from physician counseling. A majority of parents across all centers feared that their infant would die in the NICU, and approximately one third continued to fear that their infant might die at home after nursery discharge. The parents' regard for physicians' and, to a lesser extent, partners' opinions was important in decision-making. Less than one quarter of parents perceived that physicians had made actual life-support decisions on their own except in Melbourne, Australia, and Tokyo, Japan (where 74% and 45% of parents, respectively, reported sole physician decision-making). Parents would have preferred to play a more active, but not autonomous, role in decisions made for their infants. Counseling may heighten parents' anxiety during and after their infant's hospitalization, but that does not diminish their recalled satisfaction with counseling and the decision-making process. CONCLUSIONS: Counseling differs by center among these centers in Australasia and California. Given that parents desire to play an active role in decision-making for their premature infant, physicians should strive to provide parents the medical information critical for informed decision-making. Given that parents do not seek sole decision-making capacity, physicians should foster parental involvement in life-support decisions to the extent appropriate for local cultural norms.