The CPT1A Arctic variant: perspectives of community members and providers in two Alaska tribal health settings.
The CPT1A Arctic variant: perspectives of community members and providers in two Alaska tribal health settings.
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CPT1A 北极变体：两个阿拉斯加部落卫生环境中社区成员和提供者的观点。
DOI：
10.1007/s12687-023-00684-6
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发表时间：
2023
影响因子：
1.9
通讯作者：
Dillard,DeniseA
中科院分区：
文献类型：
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作者：
Beans,JulieA;Trinidad,SusanBrown;Shane,AliassaL;Wark,KyleA;Avey,JaedonP;Apok,Charlene;Guinn,Tiffany;Robler,SamanthaKleindienst;Hirschfeld,Matthew;Koeller,DavidM;Dillard,DeniseA
在阿拉斯加新生儿筛查包括筛查肉毒碱棕榈酰转移酶1A （CPT1A）缺乏。cpt1arctic variant是北极地区土著人中非常普遍的一种变体。在这项研究中，我们试图引出阿拉斯加原住民（AN）社区成员和服务AN的医疗保健提供者对cpt1aarctic变体的知识和观点。2018年10月至2019年1月期间，在阿拉斯加的两个地区举行了社区成员和医疗保健提供者的焦点小组。主题分析用于识别反复出现的构念。对cpt1aarctic变体及其健康影响的认识和理解各不相同，参与者有兴趣了解更多。建议对医疗保健专业人员进行额外的教育，以提高提供者与家庭护理人员就北极变异进行沟通的能力。与AN社区成员的接触确定了通过多种方式为提供者和护理人员提供关于北极变体的教育推广的机会，这有助于增加文化相关的指导，避免污名化、过度担忧和不必要的干预。对cpt1aarctic纯合子婴儿和儿童的护理进行教育和指导，可以改善护理，减少负面的社会心理影响。
Newborn screening in Alaska includes screening for carnitine palmitoyltransferase 1A (CPT1A) deficiency. TheCPT1AArctic variant is a variant highly prevalent among Indigenous peoples in the Arctic. In this study, we sought to elicit Alaska Native (AN) community member and AN-serving healthcare providers’ knowledge and perspectives on theCPT1AArctic variant. Focus groups with community members and healthcare providers were held in two regions of Alaska between October 2018 and January 2019. Thematic analysis was used to identify recurring constructs. Knowledge and understanding about theCPT1AArctic variant and its health impact varied, and participants were interested in learning more about it. Additional education for healthcare professionals was recommended to improve providers’ ability to communicate with family caregivers about the Arctic variant. Engagement with AN community members identified opportunities to improve educational outreach via multiple modalities for providers and caregivers on the Arctic variant, which could help to increase culturally relevant guidance and avoid stigmatization, undue worry, and unnecessary intervention. Education and guidance on the care of infants and children homozygous for theCPT1AArctic variant could improve care and reduce negative psychosocial effects.