BACKGROUND
African American women with hereditary breast cancer risk are less likely to undergo genetic counseling and testing compared with non‐Hispanic White women. Inequities in the use of precision cancer care are likely to exacerbate racial disparities in cancer outcomes. A culturally sensitive multimedia narrative intervention was developed to motivate African American women at risk for hereditary breast cancer to engage in genetic counseling.
METHODS
Development of the intervention was grounded in the Integrative Model of Behavioral Prediction using a phenomenological, deductive approach and employed multiple qualitative methods for data collection, including 1‐on‐1 interviews and story circles with members of the target audience to identify salient themes and lived experiences. Focus group testing was then conducted with members of the group of focus, primary care providers, and community stakeholders.
RESULTS
Six themes that mapped to the theoretical model were identified. Lived experiences were abstracted from story circle data to create a narrative storyline. Educational content and motivational messaging derived from the 6 themes were embedded into the script. Focus group testing with stakeholder groups was used to refine the intervention. Testing of the final multimedia narrative with focus groups indicated that the intervention was culturally sensitive and authentic, and the messaging was effective.
CONCLUSIONS
Multiple qualitative data collection methods and a robust theoretical framework of health behavior were key elements for this study to develop a culturally sensitive, narrative intervention that reflects lived experiences and motivates underserved African American women with hereditary breast cancer risk to engage in genetic counseling. This strategy can be applied to mitigate racial inequities in the use of other genomic approaches for personalizing cancer care.
Background
Despite the benefits of genetic counseling and testing, uptake of cancer genetic services is generally low and Black/African American (Black) women are substantially less likely to receive genetic services than non-Hispanic White women. Our team developed a culturally sensitive, narrative decision aid video to promote uptake of genetic counseling among Black women at risk for a hereditary breast cancer syndrome that can be incorporated in conjunction with population-based cancer risk assessment in a clinical setting. We report here a pilot study to demonstrate changes in intention to access genetic counseling and intervention satisfaction.
Methods
Black women who were personally unaffected by breast cancer and were recommended for genetic counseling based on family history screening in a mammography center were recruited at the time of the mammogram. A prospective, pre-post survey study design, guided by theoretical constructs, was used to evaluate baseline and immediate post-intervention psychosocial factors, including intention to participate in genetic counseling and intervention satisfaction.
Results
Pilot recruitment goals were met (n = 30). Pre-intervention, 50% of participants indicated that they were extremely likely to make a genetic counseling appointment, compared with 70% post-intervention (p = 0.05). After watching the intervention, 50% of participants indicated that the video changed their mind regarding genetic counseling.
Conclusions
This study demonstrated cultural satisfaction with a decision aid intervention designed to motivate Black women with hereditary breast cancer risk to attend a genetic counseling appointment. Our study showed that intention may be a specific and key construct to target in interventions designed to support decision-making about genetic services. Study results informed the design of a subsequent large scale, randomized implementation study.
Trial registration
Trial registration: Clinicaltrials.govNCT04082117.
Registered September 9, 2019.
Retrospectively registered.
African American women are disproportionately impacted by breast cancer and its associated effects. They have the highest breast cancer mortality rate of all racial and ethnic groups in the U.S., yet, many high risk African American women do not follow-up with genetic testing despite, having a shorter survival rate and more likely to develop malignancies or aggressive forms of breast cancer than white women. Purpose: This review explored breast cancer genetic follow up and barriers among African American women and made recommendations for designing tailored high risk breast cancer programs. Method: The Integrative Model of Behavioral Prediction framework provided the framework for the review. PubMed, PSYINFO, CINAHL and Cochrane Collection Plus databases were searched for articles published from 2007 to 2017 that focused on attitude and beliefs that influenced genetic testing follow up among African American women. Three reviewers independently reviewed and appraised articles. The quality of the articles was assessed to determine the evidence level and overall recommendations using the Joanna Bridge Institute grading criteria. Results: Sixteen of the 2275 articles reviewed met the inclusion criteria of which, seven showed statistically significance changes related to family concerns, medical mistrust and cost barriers; decreases in breast cancer worry and perceived risk after genetic counseling; and higher education level and diagnosed early increased genetic testing. Conclusions: This systematic review provides greater understanding of how the social determinants of health influence decisions about genetic testing and treatment to determine why African American women who are at risk for breast cancer, do not progress to genetic testing. It provided recommendations for designing sensitive curriculum content for African American women and providers to increase genetic follow-up and reduce breast cancer disparity. The results of this review could be used to design comprehensive, tailored interventions to address the identified barriers, increase breast cancer awareness and early detection, and help minority women make informed, value decisions about genetic testing and treatment options. Recommendations: Future research is required to examine the role communities, agencies and policy makers play in improving clinical outcomes for minorities.
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