title: Perceptions of participation in an observational epidemiologic study of cancer among African Americans.
abstract: OBJECTIVE
  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.
  
  
  CONCLUSIONS
  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.
authors.affiliation: Department of Epidemiology, University of North Carolina at Chapel Hill, 2101 McGavran-Greenberg Hall, CB#7435, Chapel Hill, NC 26599, USA.
authors.forename: Kyna M
authors.initials: KM
authors.lastname: Gooden
authors.forename: Lori
authors.initials: L
authors.lastname: Carter-Edwards
authors.forename: Cathrine
authors.initials: C
authors.lastname: Hoyo
authors.forename: Jabar
authors.initials: J
authors.lastname: Akbar
authors.forename: Rebecca J
authors.initials: RJ
authors.lastname: Cleveland
authors.forename: Veronica
authors.initials: V
authors.lastname: Oates
authors.forename: Ethel
authors.initials: E
authors.lastname: Jackson
authors.forename: Helena
authors.initials: H
authors.lastname: Furberg
authors.forename: Marilie D
authors.initials: MD
authors.lastname: Gammon
mesh_terms: D000328:Adult; D001741:Black or African American / Q000523:psychology*; D000368:Aged; D001294:Attitude to Health; D002986:Clinical Trials as Topic; D016021:Epidemiologic Studies; D005260:Female; D017144:Focus Groups; D006801:Humans; D008297:Male; D008875:Middle Aged; D009369:Neoplasms / Q000453:epidemiology / Q000208:ethnology*; D010342:Patient Acceptance of Health Care