Using a social marketing framework to evaluate recruitment of a prospective study of genetic counseling and testing for the deaf community

Abstract

BackgroundRecruiting 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.MethodsThe 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.Results271 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.ConclusionsThis 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.

Using Social Media as a Research Recruitment Tool: Ethical Issues and Recommendations

“…To date social media recruitment techniques have shown effectiveness for HIV vaccine clinical trials (Sitar et al 2009), occipital nerve studies (Goadsby 2013), pediatric cancer research (Akard et al 2015), depression prevention studies (Morgan et al 2013), and smoking cessation research (Frandsen et al 2014; Heffner et al 2013), among others. Perhaps more striking, they have also shown effectiveness with historically hard-to-reach populations, such as young cancer survivors (Gorman et al 2014), gay Latino males (Martinez 2014), the deaf community (Kobayashi et al 2013), and sufferers of low-incidence diseases, such as spontaneous coronary artery dissection (Tweet et al 2011; Ramo and Prochaska 2012). While unlikely to be the sole remedy for the challenges of recruitment, social media is, and will increasingly become, an important tool in the recruitment arsenal, and therefore calls for ethical and regulatory guidance that can facilitate the appropriate implementation of social media recruitment techniques.…”

Research recruitment: A marketing framework to improve sample representativeness in health research

“…The marketing approach highlighted the importance of learning and adapting strategies through monitoring of recruitment progress. Similarly, Kobayashi, Boudreault, Hill, Sinsheimer, and Palmer () used a reduced Marketing Mix of 4Ps (product, price, place and promotion) to engage a difficult to reach population of deaf individuals to a controversial study involving genomic testing. These researchers supplemented the Marketing Mix with an extra element which they termed “Messaging” (Kobayashi et al., , p. 5) where advertisements were designed to meet the current needs of the deaf community being asked to participate.…”

“…It extends Kobayashi et al's (2013) "Messaging" to start from the functions that participants need research to perform. This framework ( Figure 1) is based on a marketing model by Belch, Belch, Kerr, and Powell (2012).…”

Impact of Genetic Counseling and Connexin-26 and Connexin-30 Testing on Deaf Identity and Comprehension of Genetic Test Results in a Sample of Deaf Adults: A Prospective, Longitudinal Study

“…The research team included board-certified genetic counselors and certified project staff sign language interpreters. Details on the sample, recruitment strategies, study protocol, and research team have been previously published [6] , [36] , [40] , [46] and are described briefly below.…”