Department of Human Genetics, University of California, Los Angeles, California, USA.
BMC Med Res Methodol. 2013 Nov 25;13:145. doi: 10.1186/1471-2288-13-145.
BACKGROUND: Recruiting deaf and hard-of-hearing participants, particularly sign language-users, for genetics health service research is challenging due to communication barriers, mistrust toward genetics, and researchers' unfamiliarity with deaf people. Feelings of social exclusion and lack of social cohesion between researchers and the Deaf community are factors to consider. Social marketing is effective for recruiting hard-to-reach populations because it fosters social inclusion and cohesion by focusing on the targeted audience's needs. For the deaf population this includes recognizing their cultural and linguistic diversity, their geography, and their systems for information exchange. Here we use concepts and language from social marketing to evaluate our effectiveness to engage a U.S. deaf population in a prospective, longitudinal genetic counseling and testing study. METHODS: The study design was interpreted in terms of a social marketing mix of Product, Price, Place, and Promotion. Price addressed linguistic diversity by including a variety of communication technologies and certified interpreters to facilitate communication; Place addressed geography by including community-based participation locations; Promotion addressed information exchange by using multiple recruitment strategies. Regression analyses examined the study design's effectiveness in recruiting a culturally and linguistically diverse sample. RESULTS: 271 individuals were enrolled, with 66.1% American Sign Language (ASL)-users, 19.9% ASL + English-users, 12.6% English-users. Language was significantly associated with communication technology, participation location, and recruitment. Videophone and interpreters were more likely to be used for communication between ASL-users and researchers while voice telephone and no interpreters were preferred by English-users (Price). ASL-users were more likely to participate in community-based locations while English-users preferred medically-based locations (Place). English-users were more likely to be recruited through mass media (Promotion) while ASL-users were more likely to be recruited through community events and to respond to messaging that emphasized inclusion of a Deaf perspective. CONCLUSIONS: This study design effectively engaged the deaf population, particularly sign language-users. Results suggest that the deaf population's cultural and linguistic diversity, geography, and forms of information exchange must be taken into account in study designs for successful recruitment. A social marketing approach that incorporates critical social determinants of health provides a novel and important framework for genetics health service research targeting specific, and hard-to-reach, underserved groups.
背景:由于沟通障碍、对遗传学的不信任以及研究人员对聋人不熟悉,招募聋人和重听参与者,特别是手语使用者,参与遗传学健康服务研究具有挑战性。研究人员与聋人社区之间的社会排斥感和缺乏社会凝聚力是需要考虑的因素。社会营销对于招募难以接触到的人群非常有效,因为它通过关注目标受众的需求来促进社会包容和凝聚力。对于聋人群体来说,这包括承认他们的文化和语言多样性、地理位置以及他们的信息交流系统。在这里,我们使用社会营销的概念和语言来评估我们在美国聋人群体中参与前瞻性、纵向遗传咨询和测试研究的效果。
方法:研究设计从产品、价格、地点和推广的社会营销组合的角度进行解释。价格通过使用各种沟通技术和认证口译员来促进沟通,解决语言多样性问题;地点通过包括社区参与地点来解决地理位置问题;推广通过使用多种招募策略来解决信息交流问题。回归分析检查了研究设计在招募具有文化和语言多样性的样本方面的有效性。
结果:共招募了 271 名参与者,其中 66.1%是美国手语(ASL)使用者,19.9%是 ASL+英语使用者,12.6%是英语使用者。语言与沟通技术、参与地点和招募显著相关。视频电话和口译员更有可能用于 ASL 用户和研究人员之间的沟通,而语音电话和不需要口译员则更受英语用户的青睐(价格)。ASL 用户更有可能在社区参与地点参与,而英语用户则更喜欢医疗参与地点(地点)。英语用户更有可能通过大众媒体进行招募(推广),而 ASL 用户更有可能通过社区活动进行招募,并对强调纳入聋人视角的信息做出回应。
结论:这项研究设计有效地吸引了聋人群体,特别是手语使用者。结果表明,在研究设计中必须考虑聋人群体的文化和语言多样性、地理位置和信息交流方式,以成功招募参与者。社会营销方法结合了健康的关键社会决定因素,为针对特定和难以接触的服务不足群体的遗传健康服务研究提供了新颖而重要的框架。
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