¿Donde están? Hispanic/Latine inclusion, diversity and representation in the HEALthy Brain and Child Development Study (HBCD)

Florencia Anunziata; Cynthia Cisneros; Maria Isabella Natale Castillo; Alexandra Perez; Valeria Rodriguez; Sheila De La Cruz; Karla Estrada; Abigaile Durbal; Mishaska Jaramillo; Lidia Enriquez Marquez; Janet Nuñez; Myriam Peralta-Carcelen; Jessica Lee Wisnowski; HBCD Spanish Language and Culture Committee

doi:10.1016/j.dcn.2024.101477

¿Donde están? Hispanic/Latine inclusion, diversity and representation in the HEALthy Brain and Child Development Study (HBCD)

Dev Cogn Neurosci. 2024 Nov 14:70:101477. doi: 10.1016/j.dcn.2024.101477. Online ahead of print.

Authors

Affiliations

¹ Department of Pediatrics, University of California San Diego, San Diego, CA, USA. Electronic address: fanunziata@health.ucsd.edu.
² Department of Pediatrics, Children's Hospital Los Angeles, Los Angeles, CA, USA.
³ Division of Newborn Medicine, Boston Children's Hospital, Harvard Medical School, Boston, MA, USA.
⁴ Emory University School of Medicine, Atlanta, GA, USA.
⁵ Center for Health Sciences, Oklahoma State University, Tulsa, OK, USA.
⁶ Center for Human Development, University of California San Diego, San Diego, CA, USA.
⁷ Department of Pediatrics, Children's Hospital of Philadelphia, Philadelphia, PA, USA.
⁸ Substance Use Research and Education (SURE) Center, College of Pharmacy, University of New Mexico, Albuquerque, NM, USA.
⁹ Feinberg School of Medicine, Northwestern University, Chicago, IL, USA.
¹⁰ Department of Pediatrics, University of Alabama at Birmingham, Birmingham, USA.
¹¹ Department of Pediatrics, Children's Hospital Los Angeles, Los Angeles, CA, USA; Department of Pediatrics, University of Southern California, Los Angeles, CA, USA.

PMID: 39561678
DOI: 10.1016/j.dcn.2024.101477

Abstract

The HEALthy Brain and Child Development (HBCD) Study, a multi-site prospective longitudinal cohort study, will examine human brain, cognitive, behavioral, social, and emotional development beginning prenatally and planned through early childhood. Central to its mission of reducing health disparities is the establishment of the Spanish Language and Culture Committee (SLCC) within the HBCD framework, a significant step towards demographic representation and inclusivity in research. By addressing linguistic and sociocultural barriers and embracing the diverse identities of Hispanic/Latine individuals nationwide, the SLCC aims to promote inclusion, equity, and representation of all Hispanic/Latine subgroups, a population that has been historically misrepresented in health research. In this paper we describe the role of the SLCC in advocating for Hispanic/Latine families within the study, ensuring their inclusion from inception. This report also provides an overview of the SLCC organization, workflow, challenges and lessons learned thus far to reduce stigma and improve study outcomes, highlighting recruitment and retention strategies for the Hispanic/Latine population, and expanding outreach to promote inclusion across diverse Hispanic/Latine subgroups in the United States.

Keywords: Early childhood; HBCD; Health disparities; Hispanic/Latine populations; Longitudinal studies; Spanish Language and Culture Committee.