African Americans have a higher cardiovascular morbidity and mortality than Caucasians and Mississippi African Americans exceed the national average. Focusing on an all African American cohort, the Jackson Heart Study (JHS) is the largest longitudinal cohort study (N=6500) that explores the manifestations, natural history and risk factors to seek answers for the excessive cardiovascular disease (CVD) burden of this ethnic group. Answers to this excessive CVD burden can be obtained only if adequate numbers of African Americans can be recruited. Obtaining African American participation in clinical and genetic research is recognized as a significant challenge. Since the days of Tuskegee, recruiting African Americans into medical studies has met with justifiable resistance and skepticism. In general, recruitment strategies for non-minority groups have been employed to recruit African Americans to research studies. Few data exist on recruitment methods that are successful in the African American population. Fewer still use data from African American participants and recruiters to examine research participation issues.
Prior research with the JHS-eligible African American community identified barriers and facilitators to participation and provided a basis for designing recruitment approaches in the JHS. Culturally derived strategies for building community partnerships (Friends of the JHS), recruiting and retaining participants (Gathering the JHS Family), and generating trust with culturally sensitive language and study protocol (Safeguarding Community Concerns) were developed from the common meanings identified by potential JHS participants. A Community-Driven Model of Recruitment that challenges traditional approaches to recruitment was designed based on the Heideggerian hermeneutical analyses of interview data. This model cultivates respectful and co-equal partnerships among researchers, participants and community. Researchers and community partners trained recruiters using the research report containing community voices revealing novel strategies of recruitment as a manual. This study reports recruiter experiences using a community-driven model in this landmark study and offers potential for furthering the state of the science of recruitment of African Americans to studies that can address continuing health disparities.
Objective: The objective of this study was to chart the recruiters' and participants' experience of enacting a Community-Driven Model of Recruitment in the JHS. This study explores the common experiences and meaning of using this model for recruiting African Americans.
Design: This study employed an interpretive phenomenological design using Heideggerian hermeneutics.
Population, Sample, Setting, Years: The population for this study was ten recruiter/interviewers with experience in recruiting participants for the JHS and twenty JHS participants. Recruitment for the JHS occurs in the tri-county area surrounding Jackson, MS continuous from September 2000 through March 2004. This study examines the common experiences of recruiters and participants during the first year of recruitment.
Concept or Variables Studied: The major concepts studied derived from the Community Driven Model of Recruitment: trust, gathering practices, effective strategies of gathering research participation and community involvement.
Methods: Data was collected during bi-weekly sessions where recruiters read stories of their experiences of recruitment and from participant interviews. Recruiters co-participated in interpreting their stories. Transcribed participant interviews were likewise interpreted for themes. Cycles of interpretation were employed beginning with interpretation of individual stories to reading across stories to identify common patterns using an interpretive phenomenological approach described by Diekelmann.
Findings: The theme Inviting Not Interviewing: Gathering Participants in a Community Driven Model emerged as a major pattern. While soliciting participation and obtaining data for any participant in an epidemiological study is important, the line between people feeling they are data givers or engaged participants in a worthwhile study is a fine one. Recruiters too often experience the same. The community-driven model calls attention to this fine line. Perhaps the key to recruiting African Americans in epidemiological cohort studies lies in the nuanced skills of the recruiters and the participation of the recruiters in the study design and related research activities.
Conclusions: Field experiences through the eyes of recruiters and participants provide a rich and valuable resource for discerning effective strategies to recruit African American participation in a cohort study of CVD and revisioning the partnerships among recruiters, researchers and participants.
Implications: The participation of African Americans in clinical and public health research is essential to overcoming health disparities. The concept of trust is central to the conduct of research and gathering participation with African American families. The results of this study offer some suggestions to increase participation in longitudinal cohort studies that may ultimately enhance participation of African Americans in necessary research to decrease health disparities.
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