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A road map for the future: An exploration of attitudes, perceptions, and beliefs among African Americans to tailor health promotion of cancer-related genetic counseling and testing.
Journal of Genetic Counseling ( IF 1.9 ) Pub Date : 2020-04-15 , DOI: 10.1002/jgc4.1277
Crystal Y Lumpkins 1 , Alisdair Philp 2 , Katherine L Nelson 2 , Lynn M Miller 3 , Keith Allen Greiner 1
Affiliation  

African Americans (AA), the second largest racial/ethnic minority group in the United States (US), carry the largest mortality burden of cancer compared with other racial/ethnic groups (Cancer Facts & Figures for African Americans, 2019–2021, American Cancer Society).One solution to address this disparity is through cancer‐related genetic counseling and testing (CGT). Although CGT is utilized among the general population, it remains underutilized among AA populations. Community‐engaged and community‐driven health promotion programs within faith‐based organizations (FBOs) have been successfully implemented and delivered among AA populations (Israel et al., American Journal of Public Health, 100, 2010, 2094). FBOs are well positioned for cancer‐related health promotion and equipped as conduits of health education and information distribution for cancer prevention. In the present pilot study, a community‐based participatory approach (CBPR) was used to collect exploratory data on attitudes, perceptions, and beliefs toward CGT and uptake among an AA sample in the Midwest. Focus groups were conducted in two churches where respondents (N =34) answered a pre‐focus group survey prior to a discussion. Respondents were largely unaware of CGT and thought of testing as primarily for ancestral discovery and not for an inheritable disease. Themes identified through qualitative analysis included emotional experiences with cancer; perception of cancer risk; different pictures of genetic testing; other things to worry about; trust in the healthcare system/faith in God and the healthcare system; and ideas and insights regarding promotion of CGT. These primary themes showed participants’ perceptions of CGT were shaped by their experiences with cancer, faith, faith communities/FBOs, and cost and access to CGT. Overall, participants within these organizations had positive perceptions about the church as a conduit of genetic testing information but had mixed opinions about the rationale for completing CGT. These findings have implications for genetic counselors, medical providers, and health promotion personnel as to how AA faith populations view CGT and the utility of FBOs as promoters of CGT information.

中文翻译:

未来的路线图:探索非裔美国人的态度,看法和信念,以量身定制促进癌症相关基因咨询和测试的健康。

与其他种族/族裔群体相比,非裔美国人(AA)是美国(US)的第二大种族/族裔群体,其癌症死亡负担最大(《 2019年至2021年非裔美国人癌症事实和数据》,癌症协会)解决这一差异的一种解决方案是通过癌症相关的遗传咨询和测试(CGT)。尽管CGT已在普通人群中使用,但在AA人群中仍未得到充分利用。基于信仰的组织(FBO)中的社区参与和社区驱动的健康促进计划已成功实施并在AA人群中实施(Israel等人,《美国公共卫生杂志》,100,2010,2094)。FBO在促进癌症相关健康方面处于有利位置,并配备了健康教育和癌症预防信息分发渠道。在本试验研究中,使用了基于社区的参与性方法(CBPR)来收集关于中西部AA样本中对CGT的态度,看法和信念以及摄取的探索性数据。焦点小组在两个教堂举行,受访者(ñ= 34)在讨论之前回答了焦点前小组调查。受访者基本上不了解CGT,认为测试主要是出于祖先发现,而不是遗传性疾病。通过定性分析确定的主题包括癌症的情感经历;对癌症风险的感知;基因检测的不同图片;其他需要担心的事情;信任医疗系统/对上帝和医疗系统的信仰;关于推广CGT的想法和见解。这些主要主题表明,参与者对CGT的理解是由他们对癌症,信仰,信仰社区/ FBO的经历以及CGT的成本和获得途径所形成的。总体,这些组织中的参与者对教会作为基因检测信息的渠道有积极的看法,但对完成CGT的理由有不同的看法。这些发现对于AA信仰人群如何看待CGT以及FBO作为CGT信息推动者的效用,对遗传咨询师,医疗提供者和健康促进人员具有重要意义。
更新日期:2020-04-15
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