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

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.

Key Words: Focus Groups, Participation, Epidemiology, Recruitment, Social Cognitive Theory, Breast Cancer, Mammography, Qualitative

Selected Abbreviations and Acronyms: HIPAA, Health Insurance Portability and Accountability Act, MMHS, Mayo Mammography Health Study, SCT, social cognitive theory