1. Uterine Fibroids and Reproductive Justice:
Addressing Health Disparities through Community-Based Research
Dionne Bensonsmith Claremont Graduate University, Pomona, CA
Betsy Erbaugh Stockton University, Galloway, NJ
Teni Adewumi Black Women for Wellness, Los Angeles, CA
Introduction
Uterine fibroids (“leiomyomas”) affect the majority of women by age 50, with higher incidence and earlier onset among Black women. Hysterectomy is the most common treatment for fibroids, with a small proportion of Black women receiving alternative, effective treatments. Gaps in community and medical knowledge and barriers to care exacerbate this discrepancy. Efforts to reduce disparities may by strengthened by fuller understanding of:
How Black women use community resources to gather information and make health care decisions
Community organizations’ role in facilitating health communication and access to care
Community-academic partnerships may reopen avenues of communication previously compromised by lack of social trust between medical institutions and Black communities. Community-based research embedded in a reproductive justice framework produces knowledge not present in bio-medical, public health or reproductive rights frameworks.
Results
Knowledge of Uterine Fibroids
Most respondents were aware of the prevalence of uterine leiomyomas among Black women.
However, considerable confusion was evident regarding causes, symptoms and available treatments.
Mental Health
Although questions focused on physical health, respondents across all groups discussed mental health as a major issue related to reproductive health.
Mental health concerns were central to experiences and perceptions of receiving diagnoses, making decisions about care and treatment, and long-term well-being.
Religion
Although focus group questions did not explicitly address religion, participants in all groups addressed religion or religious thinking in relation to reproductive health and well-being.
Participants reported that doctors did not “seem to care” about religion, and expressed concern that discussing religious beliefs with doctors would make them appear “crazy.”
Religious affiliation, beliefs and practices helped respondents cope with reproductive and mental health issues.
Education
Participants expressed a need for more comprehensive education about reproduction, sexual and reproductive health and illness.
Most respondents learned about their bodies from mothers, grandmothers, aunts, sisters and social networks.
Respondents expressed special concern for young women, believing their access to sexual health education leaves them less knowledgeable than needed for good reproductive health.
Recommendations
Provide women and health care providers with additional, accurate information on:
Possible preventive measures and contributing factors to uterine fibroids
Symptoms/indicators of fibroids
The full range of possible treatments and alternatives to hysterectomy
Conduct further research and educate care providers to illuminate interconnections between reproductive health/illness and mental health/illness
Involve community-based organizations (including faith-based organizations) as sites for sexual health education and reproductive health promotion
Recognize the role of religious belief, community and practice in sexual and reproductive health, well-being, information gathering and decision making
Provide comprehensive sexual health education at all levels
Support parents, families, peers and community members as sexual and reproductive health educators
Method
In partnership with Black Women for Wellness, researchers conducted focus groups and brief surveys to investigate how Black women gather information and make decisions about fibroid tumors and reproductive health in general.
Focus groups were conducted on site at Black Women for Wellness in Los Angeles from October to December 2015:
3 focus groups
13 participants
African American and Black women
Ages  
Themes:
Sexual health education
Perceptions of health care and clinical research
Reproductive health experiences:
Preventive care
Diagnoses and treatments for problems
Gathering information and making decisions
Copyright Colin Purrington (
References
Black Women for Wellness:
Luna, ZT and K Luker, “Reproductive Justice.” Ann Rev Law & Social Science 9:
Bower, JK, PJ Schreiner, et al "Black-White Differences in Hysterectomy Prevalence: The CARDIA Study." Am J Public Health 99(2):
U.S. DHHS, “Uterine fibroids.”
Eltoukhi, HM, EA Stewart et al, “Health disparities of uterine fibroid tumors for African American women: A public health issue.” Am J Obstet Gynecol 2014:
Acknowledgments
Stockton University has provided support to this project through Research and Professional Development funds, the Provost Faculty Opportunities Fund, and the School of Social and Behavioral Sciences.
Further information
For more information please contact:
Dionne Bensonsmith: Betsy Erbaugh: