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.

Admission rates to the neonatal intensive care unit (NICU) increased by 37% from 2008 to 2018.¹ While in the NICU, intensive medical treatment occurs over days, weeks, or even months depending on the infant's gestation and underlying condition. During this time, critically ill infants may experience pain and other symptoms that are difficult for healthcare providers to assess,² and for parents to comprehend, causing distress for families.³ Compounding this issue, are racial and ethnic disparities that are known to affect the quality of care delivery, communication, decision-making, and survival among diverse infants and families.^4–10 However, assessments that are appropriate for use in the NICU and translated into languages other than English are limited. Thus, the purpose of this article is to describe a rigorous translation—backtranslation methodology to adapt measures for use in research with Spanish-speaking families in the NICU through a process called transcreation. Transcreation not just includes the word-for-word translation of materials from English to Spanish, but also incorporates the linguistic and cultural adaptation of the translation for Hispanic/Latinx audiences (ie, Spanish-speaking populations of Spanish or Latin American origin),¹¹ such that the messaging is adapted from one language to another while maintaining the original intent and context. We describe the planning, preparation, and action phases that were completed with the aid of a community advisory board (CAB) to prepare and transcreate study materials for future pilot testing and use in adequately powered research studies that are designed to capture the perspectives of Spanish-speaking participants.

BACKGROUND

In general, little is known about the experiences of Hispanic/Latinx families and the processes underlying racial and ethnic disparities in the NICU.¹⁰ In comparison to non-Hispanic/Latinx, White infants, admission rates of Hispanic/Latinx infants born in the United States have been climbing in recent years.^1,12 Racial and ethnic disparities in the quality of care delivered to Hispanic/Latinx infants in the NICU have also been documented.⁴ It has been reported in primarily White parent samples that their perceptions of infant symptoms may also influence how they view their infant's suffering or quality of life, as well as guide their decision-making about medical management and end-of-life care, including withdrawing or withholding life-sustaining therapy.^13–15 Perceptions of Hispanic/Latinx parents' are underrepresented,¹⁶ yet differences have been noted in the rituals of different cultures, especially in times of critical illness and death.¹⁷

In study conducted by Witt et al,¹⁶ Hispanic/Latinx mothers described stressors in individual, hospital, and community domains. As individuals, mothers reported feeling overwhelmed and having postpartum complications, previous stressful life events, and competing priorities. In the hospital, they perceived poor quality of care, communication issues with providers, and difficulties with transportation and parking that presented challenges in getting to the hospital to see their infant. Finally, in the community they reported a lack of support and financial resources, as well work challenges.¹⁶ An approach that considers the importance of a supportive personal care environment and community involvement for Hispanic/Latinx women in the NICU may be important for the participation of Hispanic/Latinx women in research studies.

The inclusion of Hispanic/Latinx infants and their parents in research is crucial to obtain diverse perspectives and expand upon existing knowledge of health disparities in the NICU. The adaptation of study measures into Spanish ensures that infants who meet eligibility criteria can be enrolled into the study regardless of whether their parents speak or read English. Having materials accurately transcreated in multiple languages is the first step to obtaining the important perspectives needed to close major knowledge gaps and achieve health equity in the field of neonatal care. This allows for the collection of alternative viewpoints regarding the NICU experience, which can better inform the development of assessment tools and targeted interventions.

Notable problems have occurred with measures translated through the common method of literal translation and backtranslation without incorporating additional steps to address these problems. This process often results in idioms and colloquialisms being lost in translation; a lack of conceptual equivalence for the target culture; a lack of accounting for differences, especially in vocabulary, among cultural subgroups; as well as an array of other methodological issues.^18–22 These problems indicate that the standard translation–backtranslation method commonly used in research is insufficient.

What This Study Adds

• A thorough and detailed description of the process of developing and utilizing a community advisory board for NICU symptom research.
• Suggestions for making active efforts toward employing inclusive research methods and reducing barriers to research participation for diverse families to achieve health equity.

COMMUNITY-BASED RESEARCH

To mitigate some of the problems in the standard translation–backtranslation process, it is beneficial to utilize elements of a community-based participatory research (CBPR) approach.^23–25 A CBPR approach actively seeks to incorporate the input and recommendations of bilingual native Spanish-speaking research team members and community partners as part of the translation process. Recently, a team composed of university researchers and community partners described a 5-phase model for conducting translations into Spanish within a CBPR framework, involving planning and preparation, followed by action, pretesting, and finalization.²³ In the planning and preparation phases, university researchers and community partners worked together to identify translation resources and to review and refine English versions of materials to prepare them for translation into Spanish. In the action phase, a professional translation company completed the standard translation–backtranslation process, and the researchers and community partners reviewed the Spanish versions for accuracy and made suggestions to enhance the relevance of vocabulary and phrases used based on the backgrounds of the local Hispanic/Latinx populations. In the pretesting phase, the Spanish language materials were piloted with family members, acquaintances, and additional community partners, and feedback from the pilot testing was used to revise the Spanish measures. In the finalization phase, the Spanish and English versions were compared for consistency between the 2 languages. Community partners were involved in all stages of the process and were particularly helpful for increasing the appropriateness of the translation for the specific Hispanic/Latinx populations enrolled in the study.

Alongside CBPR, the use of CABs in health research is rising. CABs are comprised of people from communities of interest and provide structure to CBPR academic–community partnerships by offering community members a leadership role and involvement in all stages of research,²³ especially program development and implementation.²⁶ CABs play the important role of liaison between the community of interest and the study team to create a valuable partnership.^27,28 They often include a range of community members, who build trust and networks between the community and the research team, advise protocol and program design, and assist with recruitment, research dissemination, and program implementation.²⁸ The use of CABs and advisory panels in the transcreation of study measures is also becoming more prominent, and research utilizing this method reflects its value. For example, CABs can offer continuous review of study measures throughout the entire translation process and improve cultural accuracy and sensitivity, maintain intended meaning and literacy levels, and advise the inclusion of additional items or changes in the research protocol.^29,30

Community-informed NICU research has also focused on program/study development and implementation,^31–33 but several studies have incorporated versions of CABs (eg, review committees) in the translation of NICU measures, composed mainly of medical and/or research experts.^34–37 Although most studies pilot test translated measures with the target population, few use advisory boards composed of imbedded community members that are not involved in research or medicine. Additionally, NICU research that thoroughly describes and reflects on the transcreation process and experience is lacking. The translation of NICU measures, to our knowledge, has primarily been conducted outside of the United States,^33–35 which presents cultural limits in using those versions with non-English-speaking families living in the United States. Thus, this article describes the phases of a CBPR approach to adapt and transcreate study materials for use in research with Spanish-speaking families in the NICU with the aid of a CAB.

PLANNING PHASE

During the planning phase, activities related to selection of research team and community team members, as well as review and revision of existing study materials, were undertaken. Institutional Review Board approval was obtained. This process took approximately 6 months and is explained next.

Identifying Study Team Members and Hiring a Bilingual Hispanic/Latinx Project Coordinator

Building trust and rapport with study participants is crucial. The inclusion of a bilingual and/or bicultural Hispanic/Latinx research team member who is familiar with both the language and culture of the specific subgroup(s) under study is important to enhance cultural sensitivity and understanding in interactions with research participants.³⁷ Thus, the research team released targeted advertisements of a research assistant position to several forums to identify potential bilingual Hispanic/Latinx candidates to coordinate the project. This position also included an application for a National Institutes of Health–funded diversity supplement grant to provide financial assistance for professional development activities, such as mentored training, conference presentations, graduate school entrance examinations, and shadowing experiences with the goal of advancing diversity in the workforce.

Having a project coordinator who would be a valued member of the research team was a hiring priority. The research team attempted to identify candidates with similar dialects or countries of origin as the target population but prioritized those that were native Spanish speakers. Building trust and rapport with study participants is a crucial element for all NICU research studies because of the sensitive nature of working with this vulnerable population, which is at high risk of critical illness and complications. Empathy, compassion, patience, and understanding are all necessary qualities for any study team member who recruits, enrolls, collects data, or performs other activities with NICU families. These families are under enormous stress related to the admission of their infant to the NICU and the disruption of normal parent–child bonding activities. Often these admissions come as a surprise to families who must quickly pivot to perhaps be at a distance from home while trying to work or to care for other children. It is important to note that these families may experience societal stressors, which could further limit or disrupt parent–child bonding (ie, quarantining, visitation restrictions, and masking while holding their infant). Research teams must be flexible and welcoming to establish trust and rapport with all families. Minoritized (eg, groups that are marginalized and/or are designated “minority status” in specific societal contexts due to social constructs³⁸) families may need additional support to feel comfortable participating in research due to mistrust and discrimination.³⁹ Having study team members who can bring their own lived experience and cultural and/or experiential awareness and sensitivity to the conduct of a study is invaluable for the inclusion of diverse families in research.^40,41 In this study, having a native Spanish-speaking Hispanic/Latinx team member who could work with bilingual CAB members, as well as Spanish-speaking study participants, contributed to ensuring that interactions with participants were culturally and linguistically appropriate and sensitive, and that community perspectives were amplified during research meetings.

Selecting a Translation Company

The translation company was selected at the early stage of seeking grant funding for the project following recommendations from previous clients and discussions with company representatives to learn about translation process and services that would be utilized.

When identifying a company, it was important to consider the translation methodology that would be utilized, the rigor of the translation process, the length of time needed to perform the translations, the cost, expectations for the frequency of communication with the company, and the receipt of a certificate of translation. The translation company chosen for this project provides translation and interpretation services for industries and organizations across many areas, including healthcare, education, business, legal and social services, and government agencies.⁴² Expert linguists employed a rigorous and accepted methodology for the translation and backtranslation and cultural acceptability of translated documents.^42,43 The company also could provide a Certificate of Translation that was required by the Institutional Review Board, and assigned a project manager to the study that was in frequent contact with the principal investigator (PI).

PREPARATION PHASE

Once funding was received for the project, the team moved into the preparation phase, which included hiring of a bilingual Hispanic/Latinx project coordinator, assembling the CAB, revising the materials for review, and preparing for CAB meetings using a focus group approach.

Assembling a CAB

We assembled the CAB with funding from the Community Engagement program in a Midwestern university Center for Clinical and Translational Science and colleagues at our institution, who had professional contacts with local Hispanic/Latinx groups. Initial discussions were productive; however, challenges securing firm commitments were encountered related to remote working, which hindered communication during the COVID-19 pandemic. We continued to contact various Hispanic/Latinx groups until we secured one community member. Using a snowball approach, we then asked for their recommendations of other community members who would be interested and available. We were intentional about which community members were contacted from these recommendations to ensure that the advisory board was composed of people from various sectors of the community. CAB members were also selected to be generally representative of the Hispanic/Latinx population admitted to the NICU, which according to hospital data, originates mainly from Mexico and Central America. This procedure continued until 6 community partners were successfully recruited. The PI on the project communicated with each potential member to describe the purpose of the research and how the CAB would provide expertise throughout the first phase of the study. CAB members attended 2 meetings to review study materials and assisted in the translation process. Community partners included 2 men and 4 women involved in law enforcement, education, mentorship, and outreach. Most were native Spanish speakers who immigrated to the United States from Costa Rica, El Salvador, or Mexico. One member was born in Puerto Rico, and another was a native Spanish speaker born second-generation in the United States. Almost all members completed a graduate program, and 2 members earned a bachelor's degree. All members had experience either teaching Spanish or working with Spanish-speaking families in the community, such as working with an organization that promotes empowerment and leadership in young Latina women. One member had translation experience in a school setting. An honorarium was provided to all CAB members to compensate them for their time spent reviewing materials and participating in 2 virtual meetings ranging from 1 to 2 hours.

Review of Existing Research Materials Written in English

The research team first reviewed and revised existing study measures that had been previously used in 2 studies with English-speaking families, one of which is not yet published.¹⁴ Additional survey items that were identified through the literature as potentially important to obtaining diverse parent perspectives were added in preparation for presentation to the CAB for review and discussion. Additional items covered cultural differences in care and how language fluency might affect care experiences and decision-making in the NICU. Table 1 presents a list of materials, including recruitment materials, that were developed in English and translated to Spanish. The Supplemental Appendix (available at: https://links.lww.com/ANC/A199) provides a detailed description of each study measure, a detailed description of measure revisions based on feedback from the CAB, and copies of the study measures in English.^44,45

TABLE 1. - Description of Translation Materials

Translated Items	Description of Materials
Recruitment and consent	Recruitment script Missed contact study introduction letter Final family contact letter Informed consent forms
Study questionnaires	Demographic questions Questions about the symptoms parents have observed their infants experience Questions about how parents make decisions for medical care for their infant Questions about perceptions of the care parents received in the NICU
Newly developed questionnaire	Questions about how comfortable parents are with the English language Checklist of experiences in the NICU for Spanish-speaking families Question about advice for medical professionals working with families whose primary language is not English
Cognitive interview	Questions about the experience of completing the surveys and the clarity of words and phrases

ACTION PHASE

During the action phase, study team members conducted a focus group with CAB members to review English materials, sent revised English materials for professional translation, conducted a second focus group with CAB members to review Spanish-translated materials, and finalized materials for the pretesting phase.

Revision of English Versions of Study Materials

Before translating study materials, study team members conducted a virtual focus group with the CAB to review the English versions. The first focus group was led by 2 facilitators who prepared questions in advance. Community partners answered questions, raised concerns not previously identified by the study team, and worked toward a consensus when differences of opinion occurred. The CAB members focused on identifying words and phrases whose meaning would be difficult to accurately translate, reformatting survey answer choices to be more inclusive and culturally appropriate, highlighting language that could be confusing for families with lower literacy levels, and providing advice on the addition of a new measure. For example, community partners suggested combining race and ethnicity into one question because some families consider their race to be Hispanic/Latinx and struggle to comfortably provide a response when these categories are separate. In addition, members advised changing “religious preference” to “spiritual preference,” to be inclusive of Caribbean and Central American cultures with more holistic spiritual views. The study team and community partners also discussed the unique experiences that Spanish-speaking families may encounter in the NICU and collaborated on the addition of a new measure. Community partners endorsed a checklist format for ease and efficiency, and members also suggested adding a space for families to list other experiences and offer advice to providers.

Professional Translations

The translation company was selected prior to the start of the study after discussions ensuring the services that could be provided would meet the research needs, a project manager from the company was assigned, and a formal quote for cost of services was obtained. To start the process, a professional linguist from the contracted company translated the text from English to Spanish, while a second linguist edited the translation. Next, a team reconciled the 2 Spanish versions to ensure consensus. A backward translation of the Spanish-translated version into English was performed by another native English-speaking translator as a third step. Finally, the translation team's review of the backtranslation occurred again to ensure consensus. Throughout the translation/backtranslation/reconciliation process, a project manager from the translation company remained in close contact with the study team.

Review of Spanish Translations

Once certified translations were received from the translation company, the PI and the bilingual research assistant reviewed the materials for formatting issues, missing items, and overall accuracy. The second virtual meeting with the CAB was then scheduled, so community partners could review the translated materials. Community partners focused on tailoring the language to the target population, identifying errors in translation, and adapting language for families with lower literacy levels. For example, community partners suggested restructuring questions regarding education to be more reflective of how schooling is organized in Central American countries. This involved using culturally appropriate phrases for our target population and asking whether each level of education was completed so as not to confuse grade levels in different countries. Meetings were organized as a discussion, in which community partners would raise a concern, discuss among themselves, and propose alternative words/phrases. The PI and the bilingual research assistant moderated the discussion and asked specific questions regarding clarity and integrity of the translation. Questions were developed prior to meetings with the intention of guiding and structuring the discussion when needed. Disagreements among CAB members were resolved as they arose. Changes to the materials were minimal and pertained to using proper grammar and adapting phrases to sound more natural in Spanish.

FUTURE DIRECTIONS

The completed phases outlined earlier have provided adapted materials in Spanish that will be tested with the target population through a pilot study. This study will consist of 20 participating families, with a maximum of 40 parents (20 birthing parents and 20 nonbirthing parents). The purpose is to finalize the transcreation of the study materials into Spanish for use in larger research studies to ensure they can be understood and completed by Spanish-speaking parents of infants in the NICU. Parents will be eligible if: (a) they are at least 18 years old, (b) they have an infant admitted to the NICU, and (c) their primary/preferred language is Spanish (including bilingual participants).

Pretesting and Practicing Phase

Prior to beginning recruitment, the bilingual research assistant will practice administering the Spanish recruitment script, consent forms, measure instructions, and cognitive interview. Once the research assistant is comfortable administering the measures, recruitment will begin. Upon providing written informed consent, parents will then complete the 4 study measures with help from the bilingual research assistant, if required. Immediately afterward, the bilingual research assistant will conduct a 10- to 20-minute cognitive interview (see the Supplemental Appendix, available at: https://links.lww.com/ANC/A199) to assess the parent's experience in completing and comprehending the study measures. Interviews will be recorded, and the bilingual research assistant will take hand-written notes of any suggested changes.

Finalization Phase

When pilot testing of the Spanish measures is complete, final changes and edits will be made according to feedback from the cognitive interviews. The materials will be examined a final time by the CAB if the PI and the bilingual research assistant have questions about the caregivers' suggestions. Once the Spanish materials are finalized, the research team will compare the English and Spanish versions for consistency in content and format. For any additions that were made to the Spanish materials, the research team will consider the cultural relevance to English-speaking participants and whether the same additions are required for the English versions. If any additional errors are identified at this stage, they will be revised in both versions of the materials.

Incorporating Materials in Future Studies

These measures were transcreated in preparation for an upcoming study at a Midwestern referral center, so they may not generalize to other Hispanic/Latinx populations (eg, South American populations) in the United States. Although these measures could be used in other future studies, investigators should consider utilizing a similar process to tailor study materials to the local Hispanic/Latinx population.

CONCLUSION

Developing and utilizing a CAB to transcreate study materials was invaluable to both the translation and research processes, as detailed below. Although making connections with Hispanic/Latinx community members was initially challenging, once one member had agreed, they directed us to others with the experience needed, as well as interest in participating. This form of snowball recruitment allowed access to community members who are not as easily identifiable or accessible and could provide unique insight into the literacy levels and cultural mannerisms of Spanish-speaking families in the area. The feedback from the CAB members was extremely beneficial and assisted the research team in reorganizing and rewording survey questions and recruitment items to ensure reader understanding and that the data of interest could be obtained. Feedback specific to the Spanish-translated versions ensured that materials were consistent in content and format, contained correct and culturally appropriate language usage in terms of meaning and vocabulary, and maintained reading levels between the English and Spanish versions. CAB members provided additional suggestions to the research protocol and recruitment process by aiding in the creation of a new, cultural-experience-focused measure and advising on sensitive methods of approaching families, building rapport, and answering parent questions during survey administration. The valuable insights of the CAB ensured that more culturally appropriate study materials were ready for pilot testing in the Spanish language.

To achieve health equity, we must make active efforts to employ inclusive research methods and reduce barriers to research participation for diverse families to ultimately affect a change in clinical practice and society as a whole to better foster inclusivity. More accurate and culturally appropriate transcreations of study measures may be one way to facilitate better communication with non-English-speaking families in health equity research, as well as to ensure true autonomy and respect for research participants. Investigators may also consider the use of CBPR and CABs, not just for the transcreation of common study measures into multiple languages, but also to advise the recruitment and engagement of racially and ethnically diverse families in research. The inclusion of diverse perspectives will better inform evidence-based interventions and clinical practices across different racial and ethnic groups.

- Summary of Recommendations for Practice and Research

What we know:	Admission rates of Latinx families to the NICU are rising. Non-English-speaking families are often excluded from research because study materials are not available in their language. The standard translation–backtranslation method currently used for measure translation has various noted problems.
What needs to be studied:	The impact of cultural and language barriers in infant and family care. The feasibility and efficacy of developing and using community advisory boards in neonatal research, especially measure translation. The creation and implementation of culturally appropriate evidence-based interventions across racial and ethnic groups.
What we can do today:	Make active efforts to design and adapt neonatal research studies to be inclusive of non-English-speaking families rather than excluding them from research. Develop a community advisory board before or during study design in neonatal research. Use community advisory boards throughout the entire research process, especially to advise the recruitment and engagement of racially and ethnically diverse families in research. Develop and utilize community advisory boards in the adaptation and translation of any study materials.