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

Abstract

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.

How do Clinicians View the Process of Shared Decision-Making with Parents Facing Extremely Early Deliveries? Results from an Online Survey

“…Prior studies have shown that both language and cultural differences between providers and parents represent a significant barrier to SDM. 10 19 In this study, 12% of physicians reported cultural backgrounds being less of a barrier (moderately/minimally difficult) and 51% reported language differences being less of a barrier. These data demonstrate that clinicians perceive a larger cultural barrier well beyond that produced by language.…”

Evaluating the Use of a Decision Aid for Parents Facing Extremely Premature Delivery: A Randomized Trial

“…The themes we identified in mothers' comments agree with previous studies and further inform how clinicians should approach the antenatal consultation encounter. 1,10,12,16,22 In this study, many mothers in the DA arm found graphic outcome statistics understandable, and many in routine counseling suggested a visual aid would have helped them. This supports that clinicians should explore parents' desire for information and tailor counseling to parental needs.…”

Decision aids available for parents making end‐of‐life or palliative care decisions for children: A scoping review

“…It was modified and then embedded in a guideline, which was assessed in a qualitative study . It was also adapted into video format, translated into Spanish and tested in a randomised controlled trial (RCT) …”

“…While DAs should be broadly applicable to the population of interest, most studies used a convenience sample as part of the development and evaluation process, thus leading to decreased generalisability . Although DAs are meant for point‐of‐care use, participants involved in the development were families who had previously made the decision that was the focus of the aid or who might be faced with that decision in the future . Only the Prematurity Decision Aid and Indomethacin Therapy in Low Birth Weight Infants Decision Aid were used in real time with parents currently making a decision.…”

“…The exclusion criteria limited citations to English publications. The Spanish version of the Prematurity Decision Aid was included because the article was in English; however, the aid was not assessed for quality. Our definitions of EOL and PC decisions were purposely broad for inclusivity.…”