gene mutations are the most commonly identified mutations that increase the risk of hereditary breast and ovarian cancer (HBOC) [1
]. Women with the mutation (carriers) have up to 70% and up to 40% lifetime risk of developing breast and ovarian cancer, respectively [2
]. Breast cancer survivors with BRCA1/2
mutations are three times more likely to develop contralateral breast cancer than non-carriers [5
]. National guidelines recommend referral to genetic cancer risk assessment for all women at high risk of HBOC based on personal and family history [6
]. Genetic cancer risk assessment typically includes meeting with a genetic counselor and considering the option of genetic testing if recommended. A positive BRCA1/2
gene test result impacts treatment choices in women diagnosed with cancer and risk management in women with and without a cancer diagnosis [8
], including an uptake of risk-reducing surgeries [9
]. Risk-reducing surgeries can reduce breast cancer risk by over 90%, ovarian cancer risk by 85–90% [10
], and increase life expectancy among mutation carriers [12
Breast cancer is the most commonly diagnosed cancer and the leading cause of cancer death in Latinas [13
]. Among Latinas in the U.S., the population prevalence of BRCA1/2
mutations is at least double that of the general population. [14
] Despite their high mutation prevalence, Latinas are significantly less likely to participate in genetic counseling and testing (GCT) compared to NHW [15
]. Underuse of GCT limits Latinas’ access to information that can inform their risk management and treatment choices, thereby improving their health outcomes [15
Disparities in GCT awareness are pervasive [19
]. In a population registry from the National Health Interview Survey, the percentage of Latinos (21%) who reported awareness of cancer genetic testing in the year 2000 was lower than Whites (50%). This gap remained stable over the 2000–2010 decade [20
]. Studies have also found low GCT awareness among Latinos at risk of HBOC [21
]. Awareness is even lower among Latinos with low education, low English proficiency, low acculturation, and those who are foreign born [24
]. Additionally, Latinos have low to moderate knowledge about HBOC and GCT [19
] and lower GCT knowledge compared to NHW [26
]. Thus, developing interventions to increase awareness about the availability of GCT services and knowledge about HBOC risk in Latinos is a key step to reducing persistent gaps in awareness and GCT utilization.
Ensuring that complex genetic information is understandable and culturally appropriate is critical, especially for the most vulnerable subgroup of Latina immigrants with low education, low health literacy, and limited English proficiency. Substantial evidence documents at-risk Latinas’ preference for interventions and education materials in Spanish that include plain language, visual aids, and a narrative format [27
]. Evidence suggests that narratives can be an effective strategy for cancer-related communication, especially for populations with low education and health literacy [30
]. Studies conducted with Latinos suggest that narrative interventions are more effective than non-narrative interventions in enhancing outcomes related to cervical cancer screening [33
], breast cancer screening [32
], and colorectal cancer screening [34
]. For instance, a culturally narrative film produced greater increases in cervical cancer knowledge and higher uptake of cervical screening compared to a non-narrative film. Importantly, the culturally targeted narrative film eradicated baseline disparities in Pap smear uptake between Mexican Americans and non-Hispanic Whites [33
We developed a culturally targeted Spanish-language narrative video for at-risk Latinas. The development process is reported elsewhere [35
]. Briefly, our multidisciplinary team collaborated with filmmakers from an actor training studio program to develop the script and video. The 18 min video illustrates the GCT process with the story of Rosa, a Latina breast cancer survivor who learns about her risk for HBOC, overcomes barriers to attend genetic counseling, and attends a genetic counseling appointment. The script was informed by extensive formative research, evidence-based risk communication strategies, and health behavior models [35
]. For instance, the video sought to elicit emotions, to convey information to address knowledge gaps (e.g., age at breast cancer diagnosis as a risk factor), and to clarify misconceptions identified in our formative research (e.g., the misconception that Pap smear is a screening test for ovarian cancer) [35
]. The video also targeted psychosocial outcomes from the Theory of Planned Behavior (TPB) [37
], including attitudes, subjective norms, perceived control, and behavioral intentions.
In addition to TPB constructs, we targeted other constructs that have emerged from prior literature. Prior research suggests that once informed, Latinos tend to hold positive attitudes towards GCT [28
]. However, studies also show that Latinos have negative attitudes related to concerns about cost, cancer stigma, discrimination, and anticipation of negative emotions [39
]. This suggests that Latinos may feel ambivalent towards GCT (holding both positive and negative attitudes) [40
], which reduces the association between the TPB constructs of attitudes, intentions, and behaviors [41
]. Although not always included in the TPB, anticipatory emotions (emotions felt right now when thinking about a future behavior) [43
] are powerful determinants of health behaviors, and they have proven to enhance the predictive capacity of health behavior models [43
]. Emotional concerns about GCT include fear and worry about obtaining a positive test result, guilt about passing a mutation to children [21
], and may also include shame toward obtaining a positive result [39
This paper presents psychosocial outcomes from a pre-post pilot study of the culturally targeted video described above. Guided by the key psychosocial variables within the expanded TPB, we assessed change in knowledge as a primary outcome and change in attitudes, subjective norms, perceived control, behavioral intentions, anticipatory emotions, and ambivalence as secondary outcomes. We hypothesized that, after viewing the video, women would exhibit increased knowledge, subjective norms, perceived control, and behavioral intentions toward GCT and more positive attitudes compared to their reports immediately before watching the video. We also hypothesized that watching the video would enhance favorable anticipatory emotions and reduce ambivalence towards participating in GCT. The goals of this paper are to (1) report immediate pre-post differences in knowledge and other psychosocial outcomes and (2) explore whether education and health literacy were related to changes in knowledge.
Our culturally targeted narrative video constitutes one of the few psychoeducational interventions about HBOC targeted to Spanish-preferring, at-risk Latina women [29
]. The video showed promising findings in improving knowledge and other important psychosocial outcomes including attitudes, anticipatory positive emotions, ambivalence, and intentions to participate in genetic counseling.
At-risk Latina women are significantly less likely to use GCT services compared to NHWs [16
]. Increasing awareness about GCT and HBOC risk is a logical first step in closing this gap. Similar to prior studies [21
] and despite being an at-risk population, our sample had extremely low awareness and low to moderate levels of knowledge at baseline. Watching our culturally-targeted video had a large and robust effect on knowledge gains reflected by three distinct measures. This is important, given the documented associations between knowledge and GCT uptake [61
]. Importantly, participants with low education and low health literacy also experienced significant increases in knowledge. This finding supports prior studies, which suggest that the use of narratives is a particularly effective way of conveying health information for populations with low health literacy [33
]. Our culturally targeted video has the potential to raise awareness and knowledge of a complex health topic in a large population of Latinos that are especially vulnerable.
In addition to knowledge gains, our video enhanced other psychosocial outcomes that have been associated with GCT uptake [19
]. Although most participants were unaware of genetic counseling at baseline, similar to prior studies [19
], most participants reported favorable attitudes when they received a brief explanation. Despite a noticeable ceiling effect on positive attitudes, positive anticipatory emotions, and intentions to participate, the significant increase in these constructs suggests that the change may be potentially due to an increase in tangible knowledge about GCT and HBOC risk, rather than potentially due to social desirability bias.
Study participants had moderate levels of ambivalence at baseline (i.e., I have doubts; I feel bittersweet about participating in GCT), but watching the video significantly reduced ambivalence towards GCT participation. It is important to highlight that the relationship between attitudes-intentions-behavior is weaker for people who score high on ambivalence [41
]. The positive effects that watching the video had on reducing cognitive ambivalence are indicative that the increase in knowledge diminished the doubts about GCT. In the affective pole, the decreased of mixed feelings could be explained by the changes in anticipatory emotions after the narrative; the video generated an increase of positive emotions and did not vary the negative effects; this differential influence could have reduced the affective ambivalence.
The emotional reactions after the video are important, considering that the affective components are especially relevant when studying health-risk behaviors [65
]. Future-oriented emotions constitute important proximal antecedents of behaviors associated with health [66
]. Our positive results on emotional reactions constitute a hopeful way to promote GCT. Perceived threat is associated with defense mechanisms such as avoidance, denial, or reactance that reduce the efficacy of the message [68
]. The video did not produce intense unpleasant feelings or extreme negative attitudes, a result that facilitates to attend the recommendations included in the message. The decrease of the level of ambivalence (cognitive and affective), in addition to the increase in knowledge, favorable attitudes, intentions, and anticipatory emotions, suggest that the video can help participants develop stronger and more favorable reactions towards GCT.
Results from this study also highlight the potential of the video to target historically identified barriers that Latinas in the U.S face for reception of GCT, including language barriers and suboptimal referrals [16
]. Few education materials are available in Spanish, and very few genetic counselors speak Spanish in the US [70
]. Spanish-speaking Latinas diagnosed with breast cancer are almost five times more likely to report unmet needs for genetic testing discussion with their providers compared to their non-Latina counterparts [72
]. In our sample of at-risk Latina women, only 10% were referred to genetic testing, and none had been referred to genetic counseling. Our culturally targeted video in Spanish can reach the U.S Latino Spanish-preferring population that has the largest information needs and may be able to prompt conversations with providers. Additionally, our video can be easily disseminated through the Internet, and it can be viewed across various platforms, including computers and mobile devices, thus multiplying the potential reach to underserved Latinos.
Strengths and Limitations
This culturally targeted narrative video constitutes one of the few psychoeducational interventions about HBOC targeted to at-risk Latina women. Our video contributes to and expands prior interventions for at-risk Latinas such as flip charts, or presentations that had only been piloted in small focus groups [13
]. We piloted the video in an underrepresented sample of 40 Latina immigrants and assessed a novel and comprehensive list of psychosocial outcomes, including constructs such as ambivalence and anticipatory emotions.
Despite the strengths, the study also has some limitations. The small sample size precluded us from conducting multivariate analysis and may have impacted the power to detect significant differences. Future studies with larger samples are warranted. The completion of the pre and post surveys at the same study visit could have resulted in a response burden. However, the use of a less cognitive burdensome mode of administration (in-person, interviewer administered, in participants’ native language) [73
] and the fact that all participants finished the pre and post surveys and no concerns about survey length were raised minimizes the potential for participant overburden. The psychosocial outcomes were only measured before and immediately after the video. Thus, future studies should include a longer follow-up to assess if changes in psychosocial outcomes are maintained. Six of the 40 participants were related (one pair of sisters and two mother–daughter pairs). Although related, participants completed the study at the same time, individually in different rooms, and the pairs of relatives had no contact with each other during the study procedures. However, it may still be possible for the changes in the outcomes of the related participants to be correlated. Due to the exploratory nature of this pilot study, we have not performed an adjustment for multiple testing. The study was conducted with a small convenience sample of Latina immigrants from Central and South America recruited from urban settings. Thus, findings may not generalize to other Latino populations from rural settings, from other regions (e.g., Caribbean), or to second-generation Latinas. Although we found preliminary evidence of the video in improving psychosocial outcomes, the study did not include a comparison arm. Future studies should evaluate the efficacy of the video in a larger randomized controlled trial. Future studies should also examine the best strategies to implement the video in clinical practice if proven to be efficacious as well as the best strategies for dissemination.