Constructing a Culturally Informed Spanish Decision-Aid to Counsel Latino Parents Facing Imminent Extreme Premature Delivery

Objective How Latino parents perceive and understand antenatal counseling for extreme prematurity, < 26 weeks of gestational age (GA), is not clear. We aim to characterize Latino parental perceptions of antenatal counseling in order to construct and validate a Spanish decision-aid (SDA) to improve parental knowledge of prematurity after antenatal consults. Methods This is a three-phased, prospective, multicenter study. First, interviews of 22 Latino parents with a history of birth < 26 weeks GA were conducted. Thematic analysis identified themes valued during antenatal counseling for decisions regarding neonatal resuscitation. Next, we incorporated these themes into the SDA. Finally, improvement in knowledge of prematurity in two Spanish-speaking groups, ‘experienced’ parents with a history of extremely premature birth and ‘naïve’ adult Latino volunteers, was measured using a multiple choice test before and after simulated counseling with the SDA. Result Twenty-two interviews generated seven unique themes. An SDA was constructed that preserved six themes paralleled by those found in a previously studied English population, and addressed a novel theme of “intercultural linguistic barriers” unique to our population. Knowledge scores rose in “naive” volunteers, 41 ± 12% to 71 ± 15% (P < 0.001), after simulated counseling with the SDA. ‘Experienced’ parents had a ceiling effect in knowledge scores, 62 ± 9% to 65 ± 11% (P = 0.22). The SDA was well received by participants. Conclusions for Practice Interviews of Latino parents with a history of premature birth generated similar themes to English-speaking parents, with intercultural linguistic barriers as a novel theme. An SDA for Latino parents facing extremely premature birth may improve comprehension of antenatal counseling.