Published online July 1, 2005
PEDIATRICS Vol. 116 No. 1 July 2005, pp. 104-111 (doi:10.1542/peds.2004-1340)
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Comparison of Mothers' and Counselors' Perceptions of Predelivery Counseling for Extremely Premature Infants

Heather T. Keenan, MDCM, PhD*, Mia W. Doron, MD, MTS*,{ddagger} and Beth A. Seyda, BS§

* Departments of Social Medicine
{ddagger} Pediatrics, University of North Carolina, Chapel Hill, North Carolina
§ Compassionate Passages, Inc, Chapel Hill, North Carolina

Objective. To understand mothers' and counselors' perceptions of their roles in decision-making about resuscitation of extremely premature infants at delivery and to assess mothers' and counselors' satisfaction with the counseling and decision-making process.

Methods. Mothers who delivered an infant between 22 and 27 completed weeks of gestation and their self-identified counselor were interviewed using a structured interview format. Mothers' and counselors' perceptions of the content, tone, and directiveness of predelivery counseling and their satisfaction with the decision-making process were compared. Demographic data were collected for the mothers, infants, and counselors. Simple descriptive statistics described demographic characteristics of mothers, counselors, and infants. Pearson’s correlation coefficient was used to determine agreement within individual mother-counselor pairs about the content and directiveness of counseling.

Results. Thirty-three counselors and 15 mother-counselor pairs were interviewed. The majority (66.7%) of mothers stated that the counselor had made a treatment recommendation, and 60% stated that they had no choice in how their infant would be treated. Only 27.3% of counselors stated that they had made a recommendation, saying instead that they had described the treatment plan or offered options. Counselors believed that mothers were given a treatment choice in 57.6% of encounters. Specific mother-counselor pairs showed little correlation in their perceptions of whether a treatment recommendation had been made (R = 0.0) or a choice had been given about resuscitation (R = 0.07). Despite a lack of perceived choice, mothers generally believed that they were included in treatment decisions (66.7%) and were satisfied with the amount of influence that they had in the decision-making process (73.3%).

Conclusions. The decision-making process in this study conforms most closely to a model of informed assent. Mothers may have been satisfied with this type of counseling because they felt informed and included in the decision-making process. Physicians and nurses need to elicit mothers' preferences to incorporate them into the treatment plan, as counseling about the resuscitation of extremely premature infants at delivery is considered directive by mothers even when it is not intended to be directive.

Key Words: counseling • decision-making • ethics • extremely preterm infants • resuscitation

Accepted Oct 21, 2004.