Cultural and linguistic adaptation of a hypospadias decision aid for Hispanic/Latino communities
Kelsey E. Binion, PhD1, Krista M. Perreira, PhD2, Laura Villa Torres, PhD, MSPH3, J. Tommy White, MPH2, Guadalupe C. Hernandez, BA2, Martin Kaefer, MD4, Rosalia Misseri, MD4, Sherry Ross, MD5, Katherine H. Chan, MD, MPH5.
1Indiana University, Indianapolis, IN, USA, 2University of North Carolina, Chapel Hill, NC, USA, 3University of North Carolina, Chapel Hill, IN, USA, 4Indiana University School of Medicine, Indianapolis, IN, USA, 5University of North Carolina School of Medicine, Chapel Hill, NC, USA.
Background: Hispanic/Latino, Spanish-speaking patients are more likely to experience decisional conflict and regret about healthcare decisions than non-Hispanic, English-speaking patients. Culturally adapted, Spanish language decision aids (DA) are important to address disparities. Few are available for urologic conditions. Our objective was to adapt the Hypospadias Hub, a rigorously developed and tested DA, for Hispanic/Latino, Spanish-speaking parents. Methods: We completed Barrera’s four-stage process of cultural adaptation guided by the Ecological Validity Model (EVM): 1) information gathering, 2) preliminary adaptation design, 3) preliminary adaptation test, and 4) adaptation refinements (Figure 1). In stage 1, we obtained recommendations for cultural adaptation from a focus group with bilingual members of our institution’s Latinx Community Review Board (CRB) and interviews with pediatricians with Hispanic/Latino-focused practices. In stage 2, we made preliminary cultural modifications, translated the Hub into Spanish, and convened a second CRB focus group to review the revised tool. In stage 3, we conducted interviews with Hispanic/Latino, Spanish-speaking parents of healthy boys ≤ 5 years old to identify usability issues with the Hub. In stage 4, we revised the Hub based on parents’ feedback. Interviews and focus groups were audio recorded and professionally transcribed. Two coders conducted a thematic analysis to identify areas of revision. Changes were applied iteratively. Results: Participants included CRB members (n=3), pediatric providers (n=3), and parents (n=5). All CRB members and parents were Hispanic/Latina women. CRB members’ mean age was 48.3 (SD=21.2). Parents’ mean age was 34.0 (SD=1.26). Providers consisted of two women and one man, none identified as Hispanic/Latino, and mean age was 49.6 (SD=9.1). Participants recommended: 1) featuring video testimonials from Hispanic/Latino families and including Spanish voice-overs/subtitles; 2) diversifying racial/ethnic/geographic representation and including extended families in photographs; 3) adding information about health insurance coverage and circumcision, 4) reassuring parents that the condition is not their fault, 5) considering cultural values (e.g., machismo, reliance on expert advice), and 6) recognizing diverse meanings of Spanish-terms based on country of origin (Figure 2). Feedback related to four EVM dimensions: concepts (e.g., circumcision is not widely practiced in the Hispanic/Latino community), content (e.g., use various skin tones for illustrations), context (e.g., Hispanic/Latino parents typically defer to providers for information), and strategies (e.g., dub videos in Spanish). All participants found the Hub informative and helpful in the decision-making process about treatment. Conclusions: We implemented cultural modifications to the Hub and applied user-centered design methods to iteratively test and revise the tool. The final product is a culturally adapted DA for Hispanic/Latino, Spanish-speaking parents. Next, we will test the efficacy of both English and Spanish language versions of the Hub intervention using a randomized controlled trial to improve the quality of shared decision making, decrease decisional conflict and regret, and increase decision-relevant hypospadias knowledge.
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