Perceptions of participation in an observational epidemiologic study of cancer among African Americans

Abstract

Purpose: Recruitment and retention of African Americans in cancer research studies has become increasingly important. However, little is known about factors bearing on recruitment and retention in etiologic observational studies of cancer. We assessed perceptions and attitudes of African Americans towards participation in an observational epidemiologic study of cancer, and attitudes toward the data collection process.

Methods: Five focus groups, each lasting approximately 2 hours, were conducted. Participants were comprised of men and women between 41-65 years of age. A total of 35 adults from three rural and two urban counties in North Carolina participated. Data were analyzed using NVivo software.

Results: Four key themes emerged on the perception of participation and retention in an epidemiologic study of cancer: (1) fear of cancer prognosis; (2) conflicts between mistrust and trust in researchers; (3) comprehension of prospective study purpose, structure, and participation strategies; and (4) the necessity for and obligation to provide feedback.

Conclusion: Results indicate that African Americans would be willing to participate in epidemiologic studies to identify etiologic risk factors for cancer. However, culturally appropriate efforts to thoroughly inform them of study process and progress are deemed essential for successful recruitment and retention.