Objective To understand mothers' and counselors' perceptions of their roles in decision making for 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. The interview included closed and open-ended questions about the content, tone, and directiveness of the pre-delivery counseling, and satisfaction with the decision making process. Demographic data were collected for the mothers, infants, and counselors. Simple descriptive statistics described demographic characteristics of mothers, counselors and infants. Pearson's correlation co-efficient was used to determine individual mother-counselor pairs agreement about the content of counseling and the decision making process.
Results Thirty-three counselors and 15 mother-counselor pairs were interviewed. The majority of mothers (66.7%) stated 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 they had made a recommendation, saying instead that they had described the treatment plan or offered options. Counselors felt that mothers were given a treatment choice in 57.6% of encounters. Specific mother-counselor pair comparisons showed little correlation in impressions of whether or not a treatment recommendation had been made (R2 = 0.0) or whether a choice had been given about resuscitation (R2 = 0.07). Despite this lack of perceived choice, mothers generally felt that they were included in treatment decisions (66.7%) and were satisfied with the amount of influence they had on treatment decisions (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 for delivery room treatment in order to incorporate them into the treatment plan, as counseling is considered directive by mothers even when it is not intended to be directive.
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