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

Received 29 July 2008; accepted 6 January 2009. published online 09 March 2009.

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

a Behavioral Health Program, Mayo Clinic College of Medicine, Rochester

b Department of Psychology, Mayo Clinic College of Medicine, Rochester

c Department of Health Sciences Research, Mayo Clinic College of Medicine, Rochester

d Division of Biostatistics, Mayo Clinic College of Medicine, Rochester

e Research and Evaluation, and Southern California Permanente Medical Group, Pasadena

Address correspondence to: Pamela S. Sinicrope, DrPh, Mayo Clinic College of Medicine, Charlton 6-271, 200 First Street SW, Rochester, MN 55905. Tel.: (507) 266-1238; fax: (507) 266-2478.

PII: S1047-2797(09)00013-1

doi:10.1016/j.annepidem.2009.01.002

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