Inclusion of Spanish-Speaking Families in NICU Symptom Research Using a Community Advisory Board

Abstract

Background: Admission rates of Hispanic/Latinx families to the neonatal intensive care unit (NICU) are rising, yet knowledge regarding their experiences is limited. Non-English-speaking families are often excluded from research because study measures are not available in their language. The inclusion of these families in NICU research is crucial to understand the impact of cultural and language barriers in infant and family care, and the translation of study measures into Spanish could better ensure that these families' perspectives are included. However, previous research has utilized the standard translation–backtranslation method with which problems have been noted. Purpose: This article describes the planning, preparation, and action phases that were completed with the use of a community advisory board (CAB) to prepare and transcreate research study materials from English to Spanish for pilot testing. Methods: Community members of interest were invited to form the CAB, and 2 meetings were held to review study materials in the English and Spanish versions. Prior to the second meeting, a professional translation company translated study materials from English to Spanish. Results: Feedback from the CAB ensured consistent content and reading levels, and culturally appropriate language usage. The CAB also provided suggestions to the research protocol and advised sensitive methods of recruitment and measure administration. Implications for Practice and Research: More accurate and culturally appropriate transcreation of study measures can reduce barriers to research participation and facilitate better communication with non-English-speaking families in health equity research to better inform evidence-based interventions and clinical practices across diverse groups.

Pilot Testing Transcreated Spanish-Language Study Materials for Symptom Research With Infants and Parents in the Neonatal Intensive Care Unit

“…Race and ethnicity were combined into one category per recommendation from the CAB because some Hispanic/Latinx families consider this classification to be their race and struggle to comfortably provide a response when race and ethnicity are separate. 16 Decision-making and Goals of Care Questionnaire. Because there is no validated measure for decision-making in the NICU, this 28-item instrument was developed by the research team (1 nurse scientist and 2 psychologists) for use in a previous study with English-speaking participants based on the literature and expert input.…”

“…This questionnaire had reasonable reliability (Cronbach α mother = 0.74 and Cronbach α father = 0.90) and is reported fully elsewhere. 16 In the current study, parents were asked about the presence of each of the 6 symptoms and if treatment had been received for the symptom (yes/no) and then ranked on a Likert scale regarding the severity, frequency, how much the symptom bothered the infant, and how much the symptom distressed the parent for each of the symptoms that were indicated by the parent as being present. Infant suffering and QOL were also rated on a 5-point Likert scale.…”

“…A new 23-item measure was created with input from the CAB. 16 Parents were first asked to rate how comfortable they felt speaking, reading, writing, and understanding English on a 5-point Likert scale (0 = Not at all, 1 = A Little, 2 = Somewhat, 3 = Very, and 4 = Completely). Parents were then asked to mark items (18 items to choose from) on a checklist that was representative of their experience in the NICU (Supplemental Digital Content 1, available at: http://links.lww.com/ANC/A269).…”

“…To address this problem, we took a multistep approach toward the inclusion of diverse families in research. First, as described previously, 16 we created a community advisory board (CAB) to review and revise both existing English surveys that have been used in previous studies, as well as provide feedback on newly translated Spanish versions. Second, as this paper describes, these surveys in Spanish were then administered to a small group of Spanish-speaking parents of currently admitted NICU patients.…”

“…The methodology that was utilized to assemble the CAB and study team members, as well as to transcreate the study materials, has been fully described elsewhere. 16…”