Development of a culturally sensitive narrative intervention to promote genetic counseling among African American women at risk for hereditary breast cancer

Abstract

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.

Genetic counseling, virtual visits, and equity in the era of COVID‐19 and beyond

“…Considerations for interventions should be across different levels of the socioecological model (Stokols, 1992 ) to ensure that individual‐level solutions and system‐level solutions are examined. Examples of solutions include culturally targeted and sensitive educational materials (Conley et al., 2021 ; Henderson et al., 2021 ), interactive digital programs (Wang et al., 2021 ), and patient outreach and system navigation efforts (Mays et al., 2012 ).…”

Healthcare Predictors of Information Dissemination About Genetic Risks

“… 55 For example, previous research shows that the well-being of breast cancer survivors who identify as AA is tied to a sense of reciprocity in giving back to and sharing knowledge with their social networks; that different forms of social support often translate into personal, interpersonal, and community advocacy for others; and that information sharing with networks is linked to a sense of responsibility and collective experience. 35 , 55 , 56 Thus, increasing the capacity for, quality, and frequency of patient GCT experiences may not only lead to better outcomes – but together, may lead to broader community impact on knowledge about hereditary risk and GCT services. Our study is among the first to suggest that intervention strategies aimed at mitigating racial breast cancer mortality disparities should leverage patients’ medical lived experiences to broadcast knowledge about hereditary risk and GCT services throughout AA familial and friend networks.…”

“… 54 Further, interventions focused on genetic risks that are culturally responsive; can be implemented in community settings; are accessible to diverse socio-economic populations; increase rates of provider referrals, knowledge, and quality of patient-provider communication; and increase availability and cultural sensitivity of trained genetic counselors may help to curtail widening health disparities that may be perpetuated with advances in precision medicine. 56 , 60 , 61 …”

Population screening to identify women at risk for hereditary breast cancer syndromes: The path forward or the road not taken?

“…In our work we found that perceived lack of insurance coverage for genetic counseling and testing was a major barrier to attending a genetic counseling appointment for underserved, racial and/or ethnic minority women with increased breast cancer risk. 13 An interesting randomized trial reported by Pasick and colleagues 20 found that when high-risk women were offered a free genetic counseling session, the uptake rate was 39% if the appointment was scheduled by the research team at the time of initial contact with the patient, compared with 4.5% if patients had to call on their own at a later time to schedule the appointment. This study suggests that removing cost barriers may be necessary, but it is not sufficient to maximize uptake of genetic counseling.…”

“…The design and use of tailored or culturally targeted educational/motivational materials may be critical to address some of the personal determinants to uptake of counseling and testing for breast cancer risk, including knowledge, attitudes, motivation, self-efficacy, and skills. [10][11][12][13] It will be essential to demonstrate whether efforts that result in changes in these personal determinants improve counseling and testing uptake and why.…”