Kinard Jessica L, Lopez-Vazquez Mónica, Robinson Luz E, Moreno-Lizarazo Oscar, Litwin Sophie G, Aguirre Anggie N, Ramirez Chavely Gonzalez, Brooks Luisa, DeRamus Margaret, Grzadzinski Rebecca, Wheeler Anne, Kelleher Bridgette, Okoniewski Katherine C
Carolina Institute for Developmental Disabilities, University of North Carolina at Chapel Hill School of Medicine, 101 Renee Lynne Ct., Chapel Hill, Carrboro, NC, 27510, USA.
Department of Linguistics, University of North Carolina at Chapel Hill, Chapel Hill, NC, 27510, USA.
J Autism Dev Disord. 2024 Sep 18. doi: 10.1007/s10803-024-06538-5.
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.
英语水平有限的美国西班牙裔家庭在自闭症诊断方面面临障碍,比如缺乏会说西班牙语的医疗服务提供者和评估手段。西班牙语远程评估有可能消除其中一些障碍。本研究探讨了一种针对极有可能患自闭症的西班牙裔婴儿的远程发育评估(家长实施的神经发育评估,即PANDABox)的可接受性和可行性。PANDABox由两个独立小组翻译成西班牙语,进行综合整理,并由10名母语为西班牙语的人进行审核。13个说西班牙语的家庭让极有可能患自闭症的婴儿完成了西班牙语版的PANDABox评估。同时实施了现有的西班牙语远程发育测量方法用于比较。之后,这些家庭参与了半结构化访谈,以探讨他们的经历,访谈内容使用归纳性扎根理论方法进行西班牙语分析。翻译审核人员发现有必要调整躲猫猫和故事书活动,加入针对照料者担忧的对话,并增加视觉辅助。使用PANDABox的家庭重视与说西班牙语的专家直接沟通,认为翻译清晰,总体而言评估实施起来很容易。家庭对面对面评估或远程评估的偏好不一,一些家庭看重PANDABox的便利性和舒适性,另一些家庭则对远程评估与面对面评估方式的有效性表示担忧。家庭还讨论了与读写能力和保密性相关的障碍。西班牙语版的PANDABox是增加实验室级神经发育评估可及性的一个有前景的选择。更广泛地说,医疗服务提供者需要考虑家庭对常见评估活动的熟悉程度、获取早期识别信息的途径以及与保密性相关的担忧。