title: Healthy women's motivators and barriers to participation in a breast cancer cohort study: a qualitative study.
abstract: OBJECTIVE
  This focus group study describes motivators and barriers to participation in the Mayo Mammography Health Study (MMHS), a large-scale longitudinal study examining the causal association of breast density with breast cancer, involving completion of a survey, providing access to a residual blood sample for genetic analyses, and sharing their results from a screening mammogram. These women would then be followed up long term for breast cancer incidence and mortality.
  
  
  METHODS
  Forty-eight women participated in six focus groups, four with MMHS non-respondents (n = 27), and two with MMHS respondents (n = 21). Major themes were summarized using content analysis. Social cognitive theory (SCT) was used as a framework for interpretation of the findings.
  
  
  RESULTS
  Barriers to participation among MMHS non-respondents were 1) lack of confidence in their ability to fill out the survey accurately (self-efficacy); 2) lack of perceived personal connection to the study or value of participation (expectancies); and 3) fear related to some questions about perceived cancer risk and worry/concern (emotional coping responses). Among MMHS respondents, personal experience with cancer was reported as a primary motivator for participation (expectancies).
  
  
  CONCLUSIONS
  Application of a theoretical model such as social cognitive therapy to the development of a study recruitment plan could be used to improve rates of study participation and provide a reproducible and evaluable strategy.
authors.affiliation: Behavioral Health Program, Mayo Clinic College of Medicine, Rochester, MN 55905, USA. sinicrope.pamela@mayo.edu
authors.forename: Pamela S
authors.initials: PS
authors.lastname: Sinicrope
authors.forename: Christi A
authors.initials: CA
authors.lastname: Patten
authors.forename: Sarah M
authors.initials: SM
authors.lastname: Bonnema
authors.forename: Julka R
authors.initials: JR
authors.lastname: Almquist
authors.forename: Christina M
authors.initials: CM
authors.lastname: Smith
authors.forename: Timothy J
authors.initials: TJ
authors.lastname: Beebe
authors.forename: Steven J
authors.initials: SJ
authors.lastname: Jacobsen
authors.forename: Celine M
authors.initials: CM
authors.lastname: Vachon
mesh_terms: D001943:Breast Neoplasms; D015331:Cohort Studies; D003625:Data Collection; D005260:Female; D017144:Focus Groups; D006801:Humans; D008875:Middle Aged; D009042:Motivation; D010358:Patient Participation / Q000523:psychology*