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January 2, 2002

Providing Information to Parents of Extremely Premature Newborns—Reply

Author Affiliations

Copyright 2002 American Medical Association. All Rights Reserved. Applicable FARS/DFARS Restrictions Apply to Government Use.2002

JAMA. 2002;287(1):41-43. doi:10.1001/jama.287.1.40

In Reply: These letters focus on information transfer to parents, particularly the acute knowledge gap that must be bridged in such a short time after the birth of an extremely premature infant, under the worst of circumstances. I agree that it is our duty to assist parents, and to avoid paternalism while taking responsibility for helping them avoid needless overload and anxiety.

Ideally, such information should be specific to the infant, factually accurate, readily accessible, understandable, and frequently updated. In addition, it should be delivered in a personal and supportive fashion, clearly differentiating the vital facts from the mass of details. No single source fits all of these criteria. Attending physicians may provide accurate and balanced updates, but their accessibility is limited. House officers may serve this role, but require close supervision to avoid inaccuracies and jargon. Experienced primary nurses and nurse practitioners are well positioned to gauge parents' needs and to offer frequent updates, but they may be hesitant to discuss long-term prognosis or ethical choices. Social workers play a vital role both in access to nonmedical information as well as skilled emotional support.

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