Khalil Amani, Yatcilla Jane, Christie Niamh, Zhou Xiang
Department of Educational Studies, Purdue University, West Lafayette, IN, 47907, USA.
Information Studies, Purdue University, West Lafayette, IN, 47907, USA.
J Racial Ethn Health Disparities. 2025 Aug 5. doi: 10.1007/s40615-025-02555-x.
Caregivers play an essential role in early help-seeking and intervention for children with Autism Spectrum Disorder (ASD). Caregivers, therefore, provide a crucial role in helping to address the racial and ethnic disparity identified in accessing ASD intervention and diagnostic services (Bejarano-Martín et al., Journal of Autism and Developmental Disorders 50(9), 3380-3394, 2020). Unfortunately, racial-ethnic minority caregivers of children with autism (CCA) are less likely to contact a physician or healthcare professionals about their concerns and more likely to delay their contact to have their child evaluated (Zeleke et al., Journal of Autism and Developmental Disorders 49(10), 4320-4331, 2019). However, little evidence exists to explain why such a gap exists in the help-seeking behaviors between White and racial-ethnic minority CCA. To address this knowledge gap, we conducted a systematic literature review to identify articles that have studied barriers in help-seeking for racial-ethnic minority CCA. A broad literature search across four databases was conducted (i.e., PubMed, PsycINFO, Education Resources Information Center, and Child Development and Adolescent Studies). The coding team identified 17 articles on help-seeking barriers for racial-ethnic minority CCA. A thematic analysis was used to narratively synthesize the help-seeking barriers identified across these 17 studies. Four themes emerged from our findings: logistical barriers, provider competence, ASD literacy, and cultural stigma. We also provided clinical recommendations for healthcare providers working with families with racial-ethnic minority CCA.
照顾者在自闭症谱系障碍(ASD)儿童的早期求助和干预中发挥着至关重要的作用。因此,照顾者在帮助解决自闭症干预和诊断服务中存在的种族和族裔差异方面发挥着关键作用(贝哈拉诺 - 马丁等人,《自闭症与发育障碍杂志》50(9),3380 - 3394,2020)。不幸的是,自闭症儿童的种族和族裔少数群体照顾者(CCA)不太可能就他们的担忧联系医生或医疗保健专业人员,并且更有可能延迟联系以让孩子接受评估(泽莱克等人,《自闭症与发育障碍杂志》49(10),4320 - 4331,2019)。然而,几乎没有证据能解释为什么白人和种族及族裔少数群体的CCA在求助行为上存在这样的差距。为了填补这一知识空白,我们进行了一项系统的文献综述,以确定研究种族和族裔少数群体CCA求助障碍的文章。我们在四个数据库(即PubMed、PsycINFO、教育资源信息中心和儿童发展与青少年研究数据库)中进行了广泛的文献搜索。编码团队确定了17篇关于种族和族裔少数群体CCA求助障碍的文章。我们使用主题分析对这17项研究中确定的求助障碍进行了叙述性综合。我们的研究结果出现了四个主题:后勤障碍、提供者能力、自闭症知识素养和文化耻辱感。我们还为与种族和族裔少数群体CCA家庭合作的医疗保健提供者提供了临床建议。