Healthy Women's Motivators and Barriers to Participation in a Breast Cancer Cohort Study: A Qualitative Study

Pamela S. Sinicrope, Christi A. Patten, Sarah M. Bonnema, Julka R. Almquist, Christina M. Smith, Timothy J. Beebe, Steven J. Jacobsen, Celine M. Vachon

Research output: Contribution to journalArticlepeer-review

14 Scopus citations


Purpose: 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.

Original languageEnglish (US)
Pages (from-to)484-493
Number of pages10
JournalAnnals of epidemiology
Issue number7
StatePublished - Jul 2009

Bibliographical note

Funding Information:
This work was supported in part through a grant to Dr. Vachon from the National Cancer Institute, R01 CA 97396. The funding sources had no role in the study design, the interpretation of data, the writing of the report, or in the decision to submit the paper for publication. We would also like to thank the study coordinators from the MMHS who contributed to the content of this manuscript and to the recruitment efforts for the MMHS.


  • Breast Cancer
  • Epidemiology
  • Focus Groups
  • Mammography
  • Participation
  • Qualitative
  • Recruitment
  • Social Cognitive Theory


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