Purpose: Greater parental autonomy in decision-making at lower limits of neonatal viability warrants effective communication of complex information at a time of high stress. Transparent decision-aids may assist this goal. Our objective was to develop and pretest a decision-aid to help parents facing extreme premature delivery during counseling regarding delivery room resuscitation.
Method: Semi-structured interviews were conducted until saturation was reached, to define the content and presentation formats of a decision aid. Interviews with health care professionals and with parents of premature infants <26 wks GA identified items and formats of information valued by parents when making resuscitation decisions. Standard methods of item development, selection and reduction distilled items into a novel decision aid. Validity was evaluated by testing the hypothesis that an effective decision-aid would improve knowledge in two groups: Parents with a history of extreme prematurity ("experienced") and healthy women without prior knowledge of prematuirty ("naïve"). Sample size estimations were 10 per group (power 90%, α 0.05, with clinically relevant knowledge increment of 30%)
Result: 31 health care workers (nurses, neonatologists, obstetricians) and 30 parents were interviewed to obtain saturation of themes. Interviewees felt visual formats to present complex information on survival, short-term morbidities, and long-term outcomes facilitated their own preparation, recall, and understanding. Parents also stressed a need for numeric figures. Accordingly, a decision-aid as a set of cards with pictures and horizontal pictographs to show survival rates and complications were designed. Pictographs depicted survival rates from 22+0 to 25+6 wks and risk for the individual components of neurodevelopmental impairment at 24 months. Pre- and post-test knowledge in a simulated counseling session showed significant improvement in 13 "experienced" parents (p=0.04); and an even greater improvement in 11 "naïve" (p<0.0001). Moreover, in a 5-question survey, most participants found the cards useful and easy to understand.
Conclusion: A decision-aid for parents facing extreme premature delivery may improve their understanding of complicated information during antenatal counseling.