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

doi:10.1016/j.annepidem.2009.01.002

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

Health Policy and Management

Research output: Contribution to journal › Article › peer-review

15 Scopus citations

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 language	English (US)
Pages (from-to)	484-493
Number of pages	10
Journal	Annals of epidemiology
Volume	19
Issue number	7
DOIs	https://doi.org/10.1016/j.annepidem.2009.01.002
State	Published - 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.

Keywords

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

UN SDGs

This output contributes to the following UN Sustainable Development Goals (SDGs)

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@article{129b06ef1c7f46169f8208a53e6f7a54,

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 A.} and Bonnema, {Sarah M.} and Almquist, {Julka R.} and Smith, {Christina M.} and Beebe, {Timothy J.} and Jacobsen, {Steven J.} and Vachon, {Celine M.}",

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.",

year = "2009",

month = jul,

doi = "10.1016/j.annepidem.2009.01.002",

language = "English (US)",

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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 A.

AU - Bonnema, Sarah M.

AU - Almquist, Julka R.

AU - Smith, Christina M.

AU - Beebe, Timothy J.

AU - Jacobsen, Steven J.

AU - Vachon, Celine M.

N1 - 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.

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

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SN - 1047-2797

VL - 19

SP - 484

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JO - Annals of epidemiology

JF - Annals of epidemiology

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ER -

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

Abstract

Bibliographical note

Keywords

UN SDGs

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