Healthy women's motivators and barriers to participation in a breast cancer cohort study: a qualitative study.
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.
Sinicrope
Pamela S
PS
Behavioral Health Program, Mayo Clinic College of Medicine, Rochester, MN 55905, USA. sinicrope.pamela@mayo.edu
Patten
Christi A
CA
Bonnema
Sarah M
SM
Almquist
Julka R
JR
Smith
Christina M
CM
Beebe
Timothy J
TJ
Jacobsen
Steven J
SJ
Vachon
Celine M
CM
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*