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

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

Research output: Contribution to journalArticle

13 Citations (Scopus)

Abstract

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
Volume19
Issue number7
DOIs
StatePublished - Jul 2009

Fingerprint

Mammography
Cohort Studies
Breast Neoplasms
Health
Focus Groups
Aptitude
Cognitive Therapy
Self Efficacy
Fear
Longitudinal Studies
Neoplasms
Theoretical Models
Mortality
Surveys and Questionnaires
Incidence

Keywords

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

ASJC Scopus subject areas

  • Epidemiology

Cite this

Healthy Women's Motivators and Barriers to Participation in a Breast Cancer Cohort Study : A Qualitative Study. / Sinicrope, Pamela S.; Patten, Christi Ann; Bonnema, Sarah M.; Almquist, Julka R.; Smith, Christina M.; Beebe, Timothy J.; Jacobsen, Steven J.; Vachon, Celine M.

In: Annals of Epidemiology, Vol. 19, No. 7, 07.2009, p. 484-493.

Research output: Contribution to journalArticle

Sinicrope, Pamela S. ; Patten, Christi Ann ; Bonnema, Sarah M. ; Almquist, Julka R. ; Smith, Christina M. ; Beebe, Timothy J. ; Jacobsen, Steven J. ; Vachon, Celine M. / Healthy Women's Motivators and Barriers to Participation in a Breast Cancer Cohort Study : A Qualitative Study. In: Annals of Epidemiology. 2009 ; Vol. 19, No. 7. pp. 484-493.
@article{72752a1bb4304f878a91ee568beb856e,
title = "Healthy Women's Motivators and Barriers to Participation in a Breast Cancer Cohort Study: A Qualitative Study",
abstract = "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.",
keywords = "Breast Cancer, Epidemiology, Focus Groups, Mammography, Participation, Qualitative, Recruitment, Social Cognitive Theory",
author = "Sinicrope, {Pamela S.} and Patten, {Christi Ann} and Bonnema, {Sarah M.} and Almquist, {Julka R.} and Smith, {Christina M.} and Beebe, {Timothy J.} and Jacobsen, {Steven J.} and Vachon, {Celine M}",
year = "2009",
month = "7",
doi = "10.1016/j.annepidem.2009.01.002",
language = "English (US)",
volume = "19",
pages = "484--493",
journal = "Annals of Epidemiology",
issn = "1047-2797",
publisher = "Elsevier Inc.",
number = "7",

}

TY - JOUR

T1 - Healthy Women's Motivators and Barriers to Participation in a Breast Cancer Cohort Study

T2 - A Qualitative Study

AU - Sinicrope, Pamela S.

AU - Patten, Christi Ann

AU - Bonnema, Sarah M.

AU - Almquist, Julka R.

AU - Smith, Christina M.

AU - Beebe, Timothy J.

AU - Jacobsen, Steven J.

AU - Vachon, Celine M

PY - 2009/7

Y1 - 2009/7

N2 - 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.

AB - 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.

KW - Breast Cancer

KW - Epidemiology

KW - Focus Groups

KW - Mammography

KW - Participation

KW - Qualitative

KW - Recruitment

KW - Social Cognitive Theory

UR - http://www.scopus.com/inward/record.url?scp=66449116142&partnerID=8YFLogxK

UR - http://www.scopus.com/inward/citedby.url?scp=66449116142&partnerID=8YFLogxK

U2 - 10.1016/j.annepidem.2009.01.002

DO - 10.1016/j.annepidem.2009.01.002

M3 - Article

C2 - 19269854

AN - SCOPUS:66449116142

VL - 19

SP - 484

EP - 493

JO - Annals of Epidemiology

JF - Annals of Epidemiology

SN - 1047-2797

IS - 7

ER -