西班牙语家庭接受远程神经发育评估的经历

IF 3.2 2区 心理学 Q1 PSYCHOLOGY, DEVELOPMENTAL Journal of Autism and Developmental Disorders Pub Date : 2024-09-18 DOI:10.1007/s10803-024-06538-5
Jessica L. Kinard, Mónica Lopez-Vazquez, Luz E. Robinson, Oscar Moreno-Lizarazo, Sophie G. Litwin, Anggie N. Aguirre, Chavely Gonzalez Ramirez, Luisa Brooks, Margaret DeRamus, Rebecca Grzadzinski, Anne Wheeler, Bridgette Kelleher, Katherine C. Okoniewski
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引用次数: 0

摘要

英语水平有限的美国西语裔家庭在自闭症诊断方面会遇到一些障碍,如缺乏讲西班牙语的医疗服务提供者和评估。西班牙语远程评估有可能解决其中一些障碍。本研究探讨了远程发育评估(家长管理神经发育评估,即 PANDABox)对于自闭症高风险西班牙裔婴儿的可接受性和可行性。PANDABox 由两个独立小组翻译成西班牙语,并由 10 位以西班牙语为母语的人士进行合成和审核。13 个讲西班牙语的家庭与他们的自闭症高风险婴儿一起完成了 PANDABox(西班牙语)。为了进行比较,还使用了现有的西班牙语远程发育测量。随后,这些家庭参加了半结构式访谈,以探讨他们的经历,并使用归纳式基础理论方法对这些经历进行了西班牙语分析。翻译审阅人员发现,有必要对躲猫猫和故事书活动进行调整,在对话中消除照顾者的顾虑,并增加视觉支持。PANDABox 家庭非常重视与讲西班牙语的专家直接沟通,认为翻译清晰,而且总体而言,管理也很容易。家庭对面对面或远程评估的偏好不一,有些家庭重视 PANDABox 的可及性和舒适性,有些家庭则对远程与面对面选项的有效性表示担忧。家庭还讨论了与识字和保密有关的障碍。PANDABox 西班牙语版是一个很有前景的选择,可提高实验室级神经发育评估的可及性。更广泛地说,服务提供者需要考虑家庭对常见评估活动的熟悉程度、早期识别信息的获取途径以及与保密性相关的问题。
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Experiences of Spanish-Speaking Families with a Remote Neurodevelopmental Assessment

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.

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来源期刊
CiteScore
8.00
自引率
10.30%
发文量
433
期刊介绍: The Journal of Autism and Developmental Disorders seeks to advance theoretical and applied research as well as examine and evaluate clinical diagnoses and treatments for autism and related disabilities. JADD encourages research submissions on the causes of ASDs and related disorders, including genetic, immunological, and environmental factors; diagnosis and assessment tools (e.g., for early detection as well as behavioral and communications characteristics); and prevention and treatment options. Sample topics include: Social responsiveness in young children with autism Advances in diagnosing and reporting autism Omega-3 fatty acids to treat autism symptoms Parental and child adherence to behavioral and medical treatments for autism Increasing independent task completion by students with autism spectrum disorder Does laughter differ in children with autism? Predicting ASD diagnosis and social impairment in younger siblings of children with autism The effects of psychotropic and nonpsychotropic medication with adolescents and adults with ASD Increasing independence for individuals with ASDs Group interventions to promote social skills in school-aged children with ASDs Standard diagnostic measures for ASDs Substance abuse in adults with autism Differentiating between ADHD and autism symptoms Social competence and social skills training and interventions for children with ASDs Therapeutic horseback riding and social functioning in children with autism Authors and readers of the Journal of Autism and Developmental Disorders include sch olars, researchers, professionals, policy makers, and graduate students from a broad range of cross-disciplines, including developmental, clinical child, and school psychology; pediatrics; psychiatry; education; social work and counseling; speech, communication, and physical therapy; medicine and neuroscience; and public health.
期刊最新文献
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