Experiences of Spanish-speaking families with a remote neurodevelopmental assessment

Abstract

U.S. Hispanic families with limited English proficiency experience barriers to autism diagnosis, such as lack of Spanish-speaking providers and assessments. Remote assessments in Spanish have the potential to address some of these barriers. This study explored the acceptability and feasibility of a remote developmental assessment (Parent Administered Neurodevelopmental Assessment, i.e., PANDABox) for Hispanic infants at high likelihood for autism. The PANDABox was translated into Spanish by two independent groups, synthesized, and reviewed by 10 native Spanish-speakers. Thirteen Spanish-speaking families completed the PANDABox-Spanish with their infant at high likelihood for autism. Remote developmental measures that exist in Spanish were administered for comparison. Families then participated in semi-structured interviews to explore their experiences, which were analyzed in Spanish using an inductive, grounded theory approach. Translation reviewers revealed the need to adapt peekaboo and storybook activities, build in dialogue addressing caregivers' concerns, and add visual supports. PANDABox families valued communicating directly to a Spanish-speaking specialist, felt that the translation was clear, and that, overall, the administration was easy. Families had mixed preferences for in-person or remote assessments, with some families valuing the accessibility and comfort of the PANDABox and others expressing concerns about the validity of remote versus in-person options. Families also discussed barriers related to literacy and confidentiality. The PANDABox-Spanish is a promising option for increasing accessibility to laboratory-grade neurodevelopmental assessment. More broadly, providers need to consider families' familiarity with common assessment activities, access to information about early identification, and concerns related to confidentiality.