"We Had to Keep Pushing": Caregivers' Perspectives on Autism Screening and Referral Practices of Black Children in Primary Care
"We Had to Keep Pushing": Caregivers' Perspectives on Autism Screening and Referral Practices of Black Children in Primary Care
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DOI：
10.1352/1934-9556-56.5.321
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发表时间：
2018-10-01
影响因子：
1.8
通讯作者：
Nichols, Helen M.
中科院分区：
文献类型：
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作者：
Dababnah, Sarah;Shaia, Wendy E.;Nichols, Helen M.
患有自闭症谱系障碍 (ASD) 的黑人儿童比白人同龄人更晚被诊断出来，更有可能被误诊，并且在三岁时接受早期干预服务或发育评估的可能性较小。使用扎根理论方法，我们征求了患有自闭症谱系障碍的黑人儿童的父母和其他主要照顾者对初级保健中自闭症谱系障碍筛查和转诊的障碍和促进因素的看法。由 22 名女性护理人员组成的社会经济多元化样本参与其中。出现了四个主题。首先，虽然一些护理人员指出他们孩子的主要医疗保健提供者促进了及时的 ASD 诊断，但其他参与者报告说，这些提供者忽视了早期对儿童发育迟缓的担忧。其次，许多参与者认为种族偏见对护理人员与初级医疗保健提供者之间的互动产生了负面影响。第三，法律/保管问题降低了护理人员跟进初级医疗保健提供者转介的能力。最后，护理人员将黑人社区中与 ASD 相关的否认、羞耻和耻辱描述为延迟转诊跟进的可能因素。讨论了基于社会经济地位的差异。需要努力改善所有抚养患有自闭症谱系障碍儿童或有患自闭症谱系障碍儿童的黑人照顾者的以家庭为中心、与文化相关的照顾，特别是对于那些遭受贫困多重影响的家庭。
Black children with autism spectrum disorder (ASD) are diagnosed later than their White peers, are more likely to be misdiagnosed, and are less likely to receive early intervention services or a developmental evaluation by three years old. Using a grounded theory approach, we solicited the perspectives of parents and other primary caregivers of Black children with ASD on barriers and facilitators to ASD screening and referrals in primary care. A socioeconomically diverse sample of 22 female caregivers participated. Four themes emerged. First, while some caregivers noted their child's primary healthcare providers facilitated a timely ASD diagnosis, other participants reported these providers ignored early concerns about child developmental delays. Second, many participants felt racial bias negatively impacted caregiver-primary healthcare provider interactions. Third, legal/ custodial issues slowed caregivers' abilities to follow up on referrals from their primary healthcare providers. Finally, caregivers described denial, shame, and stigma relating to ASD in the Black community as possible factors for delayed follow up to referrals. Differences based on socioeconomic status are discussed. Efforts to improve family-centered, culturally relevant care for all Black caregivers raising children with or at-risk for ASD are needed, particularly for those families experiencing the multiple effects of poverty.