"It takes a village": multilevel approaches to recruit African Americans and their families for genetic research
"It takes a village": multilevel approaches to recruit African Americans and their families for genetic research
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DOI：
10.1007/s12687-014-0199-8
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发表时间：
2015-01-01
影响因子：
1.9
通讯作者：
Erwin, Deborah O.
中科院分区：
文献类型：
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作者：
Ochs-Balcom, Heather M.;Jandorf, Lina;Erwin, Deborah O.
在患有乳腺癌的非裔美国家庭中寻找新突变的一个障碍是有效招募受影响家庭和未受影响家庭的亲属参与基因研究的挑战。我们采用基于社区的参与性研究 (CBPR) 为导向，通过迭代方式整合了几种基于证据的方法，以招募非裔美国人进行乳腺癌遗传流行病学研究。我们的综合方法使我们能够成功招募来自 127 个家庭的 341 名非裔美国女性（其中 247 名患有乳腺癌，94 名亲属未患乳腺癌）。 29% 的参与者是通过国家见证项目 (NWP) 网站招募的，11% 来自 NWP 成员的面对面接触，34% 来自妇女之爱大军，24% 来自之前的流行病学研究，2% 来自支持小组。在人口统计方面，我们通过不同的招募方法/来源获得了非裔美国女性样本，这些样本在教育、吸烟、体重指数以及家庭规模等几个社会人口因素方面有所不同。为了成功招募非裔美国家庭参与流行病学研究，调查人员应将社区成员纳入招募过程，灵活采用多管齐下、迭代的方法，并就潜在参与者的潜在利益提供明确的沟通策略。我们的结果增强了我们对与各种招聘方法相关的潜在好处和挑战的理解。我们为未来研究的设计提供了一个模板，并建议通过使用多管齐下的方法可以更好地实现普遍性。
One barrier to searching for novel mutations in African American families with breast cancer is the challenge of effectively recruiting families-affected and non-affected relatives-into genetic research studies. Using a community-based participatory research (CBPR) orientation, we incorporated several evidence-based approaches through an iterative fashion to recruit for a breast cancer genetic epidemiology study in African Americans. Our combined methods allowed us to successfully recruit 341 African American women (247 with breast cancer and 94 relatives without breast cancer) from 127 families. Twenty-nine percent of participants were recruited through National Witness Project (NWP) sites, 11 % came from in-person encounters by NWP members, 34 % from the Love Army of Women, 24 % from previous epidemiologic studies, and 2 % from a support group. In terms of demo-graphics, our varied recruitment methods/sources yielded samples of African American women that differ in terms of several sociodemographic factors such as education, smoking, and BMI, as well as family size. To successfully recruit African American families into epidemiological research, investigators should include community members in the recruitment processes, be flexible in the adoption of multipronged, iterative methods, and provide clear communication strategies about the underlying benefit to potential participants. Our results enhance our understanding of potential benefits and challenges associated with various recruitment methods. We offer a template for the design of future studies and suggest that generalizability may be better achieved by using multipronged approaches.