A multi-site cultural and linguistic adaptation of a hypospadias decision aid for Latinx communities

Kelsey E Binion; Krista M Perreira; Laura Villa Torres; J Tommy White; Guadalupe C Hernandez; Martin Kaefer; Rosalia Misseri; Sherry Ross; Katherine H Chan

doi:10.1016/j.jpurol.2024.04.002

A multi-site cultural and linguistic adaptation of a hypospadias decision aid for Latinx communities

J Pediatr Urol. 2024 Apr 9:S1477-5131(24)00192-X. doi: 10.1016/j.jpurol.2024.04.002. Online ahead of print.

Authors

Kelsey E Binion¹, Krista M Perreira², Laura Villa Torres³, J Tommy White⁴, Guadalupe C Hernandez⁵, Martin Kaefer⁶, Rosalia Misseri⁷, Sherry Ross⁸, Katherine H Chan⁹

Affiliations

¹ Department of Health Policy & Management, Indiana University Richard M. Fairbanks School of Public Health, Indianapolis, IN, USA. Electronic address: kbinion@iu.edu.
² Department of Social Medicine, University of North Carolina School of Medicine, Chapel Hill, NC, USA. Electronic address: krista_perreira@med.unc.edu.
³ Public Health Leadership Program, University of North Carolina Gillings School of Global Public Health, Chapel Hill, NC, USA. Electronic address: villal@unc.edu.
⁴ North Carolina Clinical and Translational Sciences Institute, University of North Carolina, Chapel Hill, NC, USA. Electronic address: jtommywhite@med.unc.edu.
⁵ North Carolina Clinical and Translational Sciences Institute, University of North Carolina, Chapel Hill, NC, USA. Electronic address: lupe_castillo_hernandez@med.unc.edu.
⁶ Department of Urology, Indiana University School of Medicine, Indianapolis, IN, USA. Electronic address: mkaefer@iupui.edu.
⁷ Department of Urology, Indiana University School of Medicine, Indianapolis, IN, USA. Electronic address: rmisseri@iupui.edu.
⁸ Department of Urology, University of North Carolina School of Medicine, Chapel Hill, NC, USA. Electronic address: sherry_ross@med.unc.edu.
⁹ Department of Urology, University of North Carolina School of Medicine, Chapel Hill, NC, USA; Department of Pediatrics, University of North Carolina School of Medicine, Chapel Hill, NC, USA. Electronic address: katherine_chan@med.unc.edu.

PMID: 38688803
DOI: 10.1016/j.jpurol.2024.04.002

Abstract

Introduction: Latinx, Spanish-speaking (LSS) patients are more likely to experience decisional conflict and regret about healthcare decisions than non-Hispanic, white, English-speaking patients.

Objective: To adapt the Hypospadias Hub (Hub), a rigorously developed and tested web-based decision aid (DA), for LSS parents.

Methods: Guided by the Ecological Validity Model (EVM), a heuristic framework was followed to culturally adapt the Hub (see Extended Summary Figure). In stage 1, recommendations were obtained from a focus group with members of the institution's Latinx Community Review Board (Latinx CRB) and semi-structured interviews with pediatricians with Latinx-focused practices. In stage 2, preliminary cultural modifications were made, the Hub was translated into Spanish, and a second focus group with the Latinx CRB was convened to review the revised Hub. In stage 3, semi-structured interviews with LSS parents of healthy boys (i.e., without hypospadias) ≤ 5 years old were conducted to identify any cultural adaptations and/or usability issues regarding the revised Hub. In stage 4, based on parents' feedback, final revisions to the Hub were made. The focus groups and parent interviews were conducted in Spanish; then, the recordings were professionally transcribed in Spanish and translated into English. Interviews with pediatricians were conducted in English; then, the recordings were professionally transcribed. Three coders conducted a qualitative content analysis to identify areas for revision. Changes were applied iteratively.

Results: Participants included 3 Latinx CRB members (2 women, 1 did not disclose gender; mean age = 48.3, SD = 21.2), 3 non-Latinx pediatricians (2 women, 1 man; mean age = 49.6, SD = 9.1), and 5 Latinx mothers (mean age = 34.0, SD = 1.26). Participants recommended: 1) featuring video testimonials from Latinx families or including Spanish voice-overs/subtitles; 2) diversifying racial/ethnic/geographic representation and including extended families in photographs/illustrations; 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., reliance on expert advice), and 6) clarifying medical terminology. Feedback related to seven EVM dimensions: concepts, content, context, goals, language, metaphors, and methods.

Discussion: Participants perceived the Hub to be informative in guiding parents' treatment decisions. Revisions were reasonable and acceptable for a linguistic and cultural adaptation for LSS parents.

Conclusions: We identified and implemented preliminary cultural modifications to the Hub and applied user-centered design methods to test and revise the website. The product is a culturally appropriate DA for LSS parents. Next, English and Spanish-versions of the Hub will be tested in a randomized controlled trial.

Keywords: Cultural adaptation; Decision aid; Hypospadias; Latinx; Shared decision-making.