Abstract
This paper presents a process evaluation of a culturally targeted narrative video about hereditary breast and ovarian cancer (HBOC) for Latina women at risk for HBOC. Spanish-speaking Latina women at risk for HBOC participated in a single arm study (n = 40). Participants watched the video developed by the authors and responded to surveys. We used mixed methods to assess theoretical constructs that are hypothesized mediators of narrative interventions (i.e., transportation or engagement, identification with characters, emotions) and implementation outcomes (e.g., acceptability). Descriptive statistics summarized theoretical constructs and implementation outcomes. We conducted Mann–Whitney U tests to assess the differences in theoretical and implementation outcomes between participants who were affected versus. unaffected and participants with different levels of education and health literacy. We used the consensual qualitative research framework to analyze qualitative data. Participants’ mean age was 47.1 years (SD = 9.48). Most participants were high school graduates or less (62.5%). Acceptability of the video was extremely high (Md = 10.0, IQR = 0.2, scale 1–10). Most (82.5%) suggested video dissemination be through social media. Participants were highly engaged (Md = 5.7, IQR = 1.5, scale 1–7), strongly identified with the main character (Md = 8.7, IQR = 2.6, scale 1–10), and reported experiencing mostly positive emotions (Md = 9.5, IQR = 2.8, scale 1–10). Participants with low health literacy and affected participants reported a significantly higher identification with the main character (p<.05). Qualitative data reinforced the quantitative findings. Women reported gaining knowledge, correcting misconceptions, and feeling empowered. Our culturally targeted video is highly acceptable and targets mechanisms of behavior change for narrative interventions. The video is easily disseminable and can be used as an education tool for patients including affected and unaffected women and patients with different education and health literacy levels. Future studies should test the impact of the video in enhancing genetic counseling and testing uptake.
Keywords: breast cancer, education, genetic counseling, hereditary breast and ovarian cancer, latinx, underrepresented populations
1 |. INTRODUCTION
BRCA1/2 variants are the most prevalent genetic variants identified in hereditary breast and ovarian cancers (HBOC) (Easton, 1999). Women with pathogenic BRCA1/2 variants have a significantly increased risk of developing breast and ovarian cancers, (Antoniou et al., 2003; Chen & Parmigiani, 2007; Litton et al., 2012) and secondary contralateral breast cancer compared to those without pathogenic BRCA1/2 variants (Valachis et al., 2014). National guidelines recommend referral to genetic cancer risk assessment for individuals at high-risk for HBOC (Carlson et al., 2009; U.S. Preventive Services, 2013). Unfortunately, Latinas are less likely to receive genetic testing compared to non-Hispanic Whites (NHW) (Cragun et al., 2019; Dean et al., 2015; Hall & Olopade, 2006; Levy et al., 2011) due to a myriad of barriers (e.g., cost, suboptimal referrals, lack of Spanish education materials, emotional concerns) (Canedo et al., 2019; Gammon et al., 2011; Glenn et al., 2012; Hann et al., 2017; Sussner et al., 2013, 2015). Compared to NHW, Latinas have lower genetic counseling and testing (GCT) awareness (Mai et al., 2014). This is particularly true for Latinas with low acculturation, low education, and low health literacy (Cruz-Correa et al., 2017; Vadaparampil et al., 2006).
Evidence suggests that narrative health education materials can be used to effectively communicate information about cancer (Baezconde-Garbanati et al., 2014; Dillard et al., 2018; Green, 2006; Kreuter et al., 2010; Larkey & Gonzalez, 2007; Ochoa et al., 2019), especially for populations with low health literacy (Baezconde-Garbanati et al., 2014; Kreuter et al., 2010; Larkey & Gonzalez, 2007; Ochoa et al., 2019). Narrative stories help viewers engage with and understand complex information, while eliciting cognitive and emotional responses that may initiate behavioral changes (Green & Brock, 2000). Theoretical mechanisms, including transportation (being highly involved or engaged in the story), identification with characters, and elicitation of emotions, have been shown to mediate the impact of narratives (Dillard et al., 2018; Green & Brock, 2000; McQueen et al., 2011; Murphy et al., 2011, Murphy et al., 2013; Yoo et al., 2014). Developing narratives that can successfully target these constructs is important. We are unaware of any prior research that has used a narrative video approach to raise awareness about HBOC among high-risk Latinas.
To address gaps in science regarding use of narrative intervention approaches for mitigating disparities in awareness about and uptake of genetic risk assessment among Latinas at risk for HBOC, our team developed an 18-min culturally targeted narrative video about HBOC. Details about the video development process and the content have been published elsewhere (Hurtado-de-Mendoza, et al., 2019). Briefly, we collaborated with filmmakers to develop the script and video. The video was informed by extensive formative research (Gomez-Trillos et al., 2019; Hurtado-de-Mendoza, et al., 2018), evidence-based risk communication strategies (Fischhoff, 2019; Morgan et al., 2002), and health behavior models (Ajzen, 1991). The video tells the story of Rosa, a Latina breast cancer survivor who learns about her risk of carrying a variant associated with HBOC and wants to make a decision regarding counseling and testing. The video depicts Rosa’s interactions with her oncologist, family, genetic counselor, and friend. Rosa overcomes barriers to attend genetic counseling by talking with her family about her options and calling her mother to gather a detailed family history. After Rosa makes the decision to attend genetic counseling, her daughter Camila accompanies her to support her. The video briefly shows part of the discussion with the genetic counselor providing education as well as illustrating the testing process. The final scene shows Rosa recommending genetic counseling and testing to a friend.
The goal of the video was to enhance psychosocial outcomes such as knowledge and attitudes and ultimately to increase GCT uptake. We piloted the video in a convenience sample of 40 at-risk Latinas in the United States (U.S.) and found preliminary evidence that the video improved knowledge, attitudes, and intentions to participate in genetic counseling, among other psychosocial outcomes (Hurtado-de-Mendoza, et al., 2019). In the present mixed-methods paper, we highlight details of participants’ reports of transportation, identification with characters, and the emotions they experienced. We assess video acceptability and participants’ suggestions for dissemination and implementation.
2 |. METHODS
2.1 |. Participants
Women were eligible if they self-identified as Latina/Hispanic, spoke Spanish fluently, were ≥ 18 years old, met 2018 National Comprehensive Cancer Network (NCCN Clinical Practice Guidelines in Oncology (NCCN Guidelines®) (2018)) guidelines for HBOC genetic assessment based on personal or family history, and had never received genetic counseling nor testing.
2.2 |. Procedures
We recruited participants through two community-based organizations (CBOs), community outreach, and from participants from a prior study who agreed to be recontacted (Hurtado-de-Mendoza, et al., 2018). Research Assistants (RAs) assessed eligibility, explained the study, and scheduled an in-person meeting. During the in-person meeting, RAs obtained participants’ verbal consent, administered a pre-video baseline survey, showed the video, and administered a post-video survey. The RAs also conducted a short semi-structured interview. Participants received a $30 gift card. Participants interested in obtaining genetic counseling were referred through patient navigators at the partner CBOs. Georgetown University Institutional Review Board approved all the study procedures. Data were collected from May 2018 to September 2019.
2.3 |. Measures
2.3.1 |. Sociodemographic and clinical factors
Sociodemographic factors included age, race, country of birth, years in the United States, education, marital status, income, and insurance status. We measured health literacy with a 5-point Likert scale item that assessed womens’ confidence in their ability to fill out medical forms on their own (Moran et al., 2016). Participants were categorized as having low health literacy if they reported feeling not at all/kind of comfortable and they were categorized as having high health literacy if they reported feeling pretty/really/extremely confident. Clinical factors included personal and family history of breast or ovarian cancer diagnosis (Yes/No).
2.3.2 |. Quantitative measures
Transportation
We administered nine items from the Green and Brock (2000) transportation scale and adapted them for video viewing (versus. story reading) to assess level of engagement or involvement with the story (e.g., ‘I could imagine myself in the scene of events portrayed by the story’). Response options were 7-point Likert-type scales anchored at 1 = not at all and 7 = very much. Higher scores represent higher levels of transportation. Since the Cronbach’s alpha for the 9-item version was low in this sample (alpha =0.5), we followed prior studies/approaches (Murphy et al., 2013) and used a 6-item shorter version that excluded the reverse coded items and one item with low loading (alpha =0.7).
Identification with characters
We assessed four components of identification on a Likert-type response scale from 1 = not at all to 10 = very much including: liking, similarity, parasocial identification (feeling like they know the character), and wishful identification (wanting to be like the character) (Murphy et al., 2013). We averaged the scores of the four identification items. Higher scores represent higher levels of identification. Participants rated the extent to which they identified with the main character, Rosa, a women diagnosed with breast cancer (alpha=0.74), and Paula, Rosa’s friend, a woman without cancer who has a family history of ovarian cancer (alpha=0.76). Participants also had to name the character with whom they most identified.
Emotions
We adapted a scale developed by Murphy and colleagues (Murphy et al., 2013) in which participants rated the extent to which the video made them feel different emotions on a Likert-type response scale ranging from 1 = not at all to 10 = very much. Higher scores indicate higher positive ratings of each emotion. Instead of measuring the six basic emotions like the original scale (i.e., anger, disgust, fear, happiness, sadness, and surprise), we assessed a larger representation of positive emotions (i.e., happiness, hope, and calm; alpha=0.64) and other emotions deemed to be important in prior research (i.e., distress, sadness, and fear; alpha=0.84) (Yoo et al., 2014).
Acceptability
To evaluate the overall acceptability of the video on a 10-point Likert scale (ranging from 1 = not at all to 10 = highly) (alpha=0.80), we used three items from a prior scale (Baezconde-Garbanati et al., 2014) to assess how much participants liked the video, enjoyed watching the video, and thought the video was interesting. We added one more item to capture overall satisfaction. Additionally, we developed eight face-valid items to evaluate participants’ perceptions about specific aspects of the video (e.g., length, usefulness of the information). The 5-point Likert response scale ranged from 1 = strongly disagree to 5 = strongly agree (alpha=0.81). Higher scores indicate higher acceptability.
Dissemination and Implementation Suggestions
Participants answered two multiple-choice questions about strategies to implement and disseminate the video (e.g., social media, hospitals) and preferred contexts to watch the video (e.g., alone, with relatives). Participants could select multiple choices from the list and add others if needed.
2.4 |. Qualitative data collection
The semi-structured interview explored participants’ immediate reactions, feelings, what they liked the most/least, whether the information was easy to understand, what they learned, perceptions about the characters, suggestions to improve the video, and suggestions on ways to implement and disseminate the video. The interviews lasted 9 min on average, ranging from 3 to 26 min. Interviews were audio-recoded and transcribed verbatim in Spanish by bilingual RAs.
2.5 |. Data analysis
2.5.1 |. Quantitative
Quantitative analyses were performed using SPSS version 25. We used descriptive statistics to summarize the sociodemographic data, theoretical constructs, and implementation outcomes. The data for the constructs of acceptability, transportation, identification with characters, and emotions were not normally distributed. Therefore, we conducted Mann–Whitney U tests, to compare acceptability, transportation, identification, and emotions while watching the video between different categories of participants based on demographic and clinical characteristics: diagnosed with cancer (n = 12) versus. unaffected (n = 28), high school or less (n = 25) versus. some college or more (n = 15), and low (n = 16) versus. high (n = 24) health literacy.
2.5.2 |. Qualitative
To analyze the interviews, we combined an inductive approach in which themes emerged from the interviews, with a deductive approach guided by the theoretical constructs. Three bilingual team members read five interviews and independently developed a list of codes. Then, they reconciled their codebooks to develop a master codebook. Throughout the entire coding process, the codebook was adjusted and refined. Using the Consensual Qualitative Research Framework (Hill, 2005), three RAs independently coded the interviews in Spanish with two RAs coding each interview using qualitative analysis software (Dedoose). Disagreements in coding were reconciled by consensus through discussion between the two coders. Then, the Principal Investigator (AHM) (a) reviewed all the codes and generated themes by combining similar ones (e.g., understanding and ability of video to provide information) and splitting other codes (e.g., aspects they liked), and (b) reviewed the data to ensure themes provided an accurate representation. Four members of the team selected quotes representative of themes.
3 |. RESULTS
Participants (N = 40) had a mean age of 47.3 (SD = 9.5) and had lived on average 16 years in the US (SD = 9.2). Most were born in El Salvador (52.5%), were married (60%), had an annual household income ≤ $40,000 (65%), and were uninsured (77.5%). Additionally, 40% had low health literacy. Most had high school or less (62.5%); with 17.5% completing 6th grade or less and 20% completing between 7th and 11th grade. Most were unaffected with cancer (70%) (see Table 1 for more details).
TABLE 1.
Sociodemographic and clinical factors
| Sociodemographic and clinical factors | N (%) |
|---|---|
| Marital status | |
| Married/living as married | 24 (60) |
| Divorced/separated/widowed/never married | 16 (40) |
| Country of birth | |
| El Salvador | 21 (52.5) |
| Peru | 6 (15) |
| Guatemala | 4 (10) |
| Mexico | 4 (10) |
| Bolivia | 3 (7.5) |
| Chile | 1 (2.5) |
| Venezuela | 1 (2.5) |
| Annual household income | |
| $40,000 or less | 26 (65) |
| More than $40,000 | 10 (25) |
| Preferred no to answer/Missing | 4 (10) |
| Health insurance | |
| Insured | 9 (22.5) |
| Uninsured | 31 (77.5) |
| Health literacy | |
| Not at all comfortable | 9 (22.5) |
| Kind of comfortable | 7 (17.5) |
| Pretty comfortable | 12 (30) |
| Really comfortable | 9 (22.5) |
| Extremely comfortable | 3 (7.5) |
| Education | |
| No Education to 6th grade | 7 (17.5) |
| From 7th grade to 11th grade | 8 (20) |
| Completed 12th grade | 10 (25) |
| Completed some college | 10 (25) |
| Graduate school | 5 (12.5) |
| Cancer diagnosis | |
| Affected (breast/ovarian) | 12 (30) |
| Neved diagnosed (unaffected) | 28 (70) |
3.1 |. Quantitative analysis
3.1.1 |. Transportation, identification with characters, and emotions
Participants reported feeling highly transported by the video (Md = 5.7, IQR = 1.5). There were no statistically significant differences in transportation based on affected status (p>.05), education (p>.05), or health literacy (p>.05).
The majority of participants (65%) identified most with the main character, Rosa (a breast cancer survivor), followed by her daughter, Camila (17.5%), friend, Paula (undiagnosed with cancer but with a family history of ovarian cancer) (7.5%), and the genetic counselor (5%). Women highly identified with Rosa (Md = 8.7, IQR = 2.6). Affected women had a statistically significantly higher identification with Rosa compared to unaffected women (p<.05). Women with low health literacy also had a statistically significantly higher identification with Rosa compared with women with high health literacy (p<.05).
The video triggered mostly positive emotions (Md = 9.5, IQR = 2.8) while negative emotions were rated relatively low (Md = 2.2, IQR = 4.5). The highest rated positive emotions were being hopeful and calm. Among the negative emotions, sadness had the highest rating. There was a tendency for participants with low (versus. high) health literacy to have higher ratings of positive emotions (p = .07). There were no statistically significant differences in emotions between affected and unaffected women, nor between women with low and high education (see Tables 2 and 3).
TABLE 2.
Theoretical constructs and implementation outcomes
| Theoretical constructs | |
|---|---|
| Transportation (scale 1–7) | Md (IQR) |
| Transportation | 5.7(1.5) |
| Identification with characters(scale 1–10) | |
| Rosa | 8.7 (2.6) |
| Paula | 3.6 (3.4) |
| Emotions while watching the video | Md (IQR) |
| Positive emotions (scale 1–10) | 9.5 (2.8) |
| Hopeful | 10.0 (2.0) |
| Calm | 10.0 (2.0) |
| Happy | 9.0 (3.0) |
| Negative emotions (scale 1–10) | 2.2 (4.5) |
| Sad | 3.0 (6.0) |
| Distress | 1.0 (5.0) |
| Scared | 1.0 (4.0) |
| Implementation outcomes | |
| Acceptability | Md (IQR) |
| General acceptability (scale 1–10) | 10.0 (0.2) |
| General Satisfaction (scale 1–10) | 10.0 (0.0) |
| Found the video interesting (scale 1–10) | 10.0 (0.0) |
| Liked the video (scale 1–10) | 10.0 (0.0) |
| Enjoyed the video (scale 1–10) | 10.0 (0.0) |
| Specific acceptability (scale 1–5) | 5.0 (0.2) |
| Acceptable length (scale 1–5) | 5.0 (0.0) |
| Information easy to understand (scale 1–5) | 5.0 (0.0) |
| Helpful information (scale 1–5) | 5.0 (0.0) |
| Appropriate level of details (scale 1–5) | 5.0 (0.0) |
| Learned a lot about HBOC (scale 1–5) | 5.0 (0.0) |
| Useful to understand my risk (scale 1–5) | 5.0 (0.0) |
| Would share with other at-risk women (scale 1–5) | 5.0 (0.0) |
| Had problems understanding information (scale 1–5) | 1.0 (1.0) |
| Dissemination and implementation | N (%) |
| Social media | 33 (82.5) |
| Youtube | 21 (52.5) |
| Hospitals | 16 (40) |
| Community centers | 15 (37.5) |
| Church | 15 (37.5) |
| DVD | 7 (17.5) |
| Context for watching the video | N (%) |
| With relatives | 31 (77.5) |
| With friends | 26 (65) |
| With other at-risk women | 15 (37.5) |
| Alone | 10 (25) |
TABLE 3.
Median differences in theoretical constructs and implementation outcomes by education, health literacy, and cancer diagnosis
| Outcomes | Education (Md, IQR) |
Health Literacy (Md, IQR) |
Cancer Diagnosisa (Md, IQR) |
||||||
|---|---|---|---|---|---|---|---|---|---|
| Low | High | P | Low | High | P | Yes | No | P | |
| Transportation | 6.0 (1.6) | 5.5 (1.5) | >.05 | 6.0 (1.5) | 5.5 (1.7) | >.05 | 5.4 (1.8) | 6.0 (1.7) | >.05 |
| Identification with Rosa | 9.2 (2.0) | 8.2 (2.5) | >.05 | 9.6 (1.4) | 8.2 (2.4) | .01 | 9.4 (1.4) | 7.7 (2.5) | .03 |
| Positive Emotions | 10.0 (2.5) | 8.7 (2.7) | >.05 | 10.0 (0.9) | 8.7 (3.2) | .07 | 9.8 (2.5) | 9.0 (2.7) | >.05 |
| Negative Emotions | 3.0 (5.8) | 2.0 (2.7) | >.05 | 2.7 (6.3) | 2.0 (4.0) | >.05 | 1.7 (2.0) | 2.0 (4.3) | >.05 |
| General Acceptability | 10.0 (0.0) | 9.9 (0.7) | .07 | 10.0 (0.0) | 10.0 (0.5) | >.05 | 10.0 (0.0) | 10.0 (0.5) | >.05 |
| Specific Acceptability | 5.0 (0.1) | 5.0 (0.2) | >.05 | 5.0 (0.1) | 5.0(0.3) | >.05 | 5.0 (0.0) | 5.0 (0.3) | >.05 |
Cancer diagnosis indicated as Yes/No for women with a personal diagnosis of cancer (Yes) and without a personal diagnosis of cancer (No).
3.1.2 |. Acceptability
Participants rated the general acceptability of the video as extremely high (Md = 10.0, IQR = 0.2). There was a tendency for women with low education versus. high education to have higher ratings of general acceptability (p = .07).
Participants also had very favorable perceptions of specific aspects of the video, including appropriate length, usefulness of the information, appropriate level of details, how much they learned, usefulness to understand their risk, understandability of the information, and willingness to share with other at-risk women (Md = 5.0, IQR = 0.2) (see Table 2). There were no statistically significant differences in specific acceptability by affected status, education, or health literacy (see Tables 2 and 3).
3.2 |. Recommendations for dissemination and implementation
Most participants reported that the best strategy to disseminate the video for the Latinx community would be through social media (82.5%) and YouTube (52.5%). Participants reported that the best context for watching the video would be to watch it with relatives (77.5%) or friends (65%) (see Table 2).
3.3 |. Qualitative analysis
Participants expressed positive perceptions of the video and felt that the video was targeted to Latinas because it portrayed their culture and was filmed in Spanish. Women praised the video’s narrative style and reported that they identified with the characters. Specifically, participants highlighted the portrayal of family relationships. Women reported feeling a variety of emotions while watching the video. They also mentioned that they learned new information and felt empowered to act on the information. Finally, women also expressed a desire to share the video with the broader community and offered suggestions on strategies (see Table 4 for exemplary quotations).
TABLE 4.
Exemplary quotes from the qualitative analysis
| Selected Quotes from Interviews | |
|---|---|
| Transportation | ‘It’s much better, it’s more colloquial because if it’s presented like a documentary it tends to be boring for the people, “I have to understand terms and history and remember names.” But no, they have made it like a scene in a telenovela so it captures my attention to see what is going to happen’. (ID: 109, 52 y/o, No diagnosis) ‘Well, to be honest, it greatly impacted me because I felt as if I was in there. I liked it a lot because sometimes I have felt – as if – that I am going through that same process’. (114, 47 y/o, No diagnosis) |
| Identification | ‘Well, I didn’t expect a video like that. It was beautiful, it was like everyday life, a normal person as it happened to me (…) It was clear, fast and simple (…) and I liked that it was not boring’. (128, 52 y/o, Breast cancer diagnosis) ‘What I liked the most… that the family supported each other. Everybody. The father, the mother and the children were supporting each other’. (116, 44 y/o, No diagnosis) |
| Emotions | ‘My first reactions – being happy, more reassured and leaving behind the fear of having cancer…the genetic test, for me, represents a lot of knowledge if it comes out positive, prevent it, which is the message of this video’ (ID 133, 58 y/o, No diagnosis). ‘I liked that the lady took it easy. With peace, what was happening to her and she was very determined to continue on the right path to take this with peace and hope’ (123, 52 y/o, No diagnosis) |
| Information learned |
‘I thought it was the same thing.(…) I mean counseling or the genetic test, that one would go directly into the genetic test. I thought it was interesting that one has genetic counseling first, where they explain the process and then the genetic test, if the person decides to do it or not to do it. I had no idea’ (ID: 111, 43 y/o, No diagnosis) ‘First, I did not know that breast cancer and ovarian cancer were related. Nor was I informed that by having more information we can be prepared (…) and to be able to help both our children and our family members’ (124, 38 y/o, Breast Cancer diagnosis) |
| Empowerment and motivation for action | ‘Thank you for this video because it has helped me to – to understand it and take from it strength that one can do it – one can move forward with the obstacles and sicknesses that come in one’s life’. (ID: 114, 47 y/o, No diagnosis) ‘It feels a little more confident in the aspect of knowledge. Well, you have more options to find means to informs yourself about cancer’. (104, 39 y/o, No diagnosis) |
| Sharing video with Latino community | ‘I believe like things like Facebook and things where people are always [connected] especially I think that the Latino community is always on social media like on Facebook. That is how they see information- then they will see more information, like being their own vet. Like reading the articles on google and wanting to know more information’. (110, 23 y/o, No diagnosis) ‘Well, For example, at the dentist, in different types, not only in oncologist offices. In every type of medical consultant office because people are always waiting, and I have gone to appointments, many appointments with my mom, and have learned about nutrition while sitting and waiting’. (109, 52 y/o, No diagnosis) |
| Other Suggestions for Improvement | ‘I did not like the mom because (…) instead of supporting her, the mom was very negative. I don’t think that should be the role of a mother. The role of a mother is to support her children in good and bad times. And overall, in this sickness we need words of encouragement, not negativity’. (132, 50 y/o, Breast cancer diagnosis) |
3.4 |. Transportation, identification with characters, and emotions
Participants enjoyed the narrative style and liked that the video resembled a telenovela, because they were engaged with the story, which made them think about their own relatives and personal experiences. As one participant stated:
It’s like transporting yourself to someone else’s life and seeing yourself there at that moment because I transported myself there and put myself in the place of the lady and thought of my daughters, my niece (106, 39 y/o, No diagnosis).
Participants reported identifying with the video characters. Most women identified with Rosa, the main character, praising her calmness, strength, determination, and how she overcomes her fears for her family.
Months before I was diagnosed with cancer, they had deported my children’s father. (…) I said that I have to be strong for my children and try to always be strong in front of them because I am their mirror. So, I identify with her with that strength that if we can, we will give everything (124, 38 y/o, Breast cancer diagnosis).
Women related to the family scenes and reported especially liking the portrayal of emotional support and joint decision making within the family. Participants also felt the video was representative of Latinx families like theirs: ‘It’s a normal, common, and ordinary family like mine, like yours, perhaps. (…) it is any family and it can happen to anyone’. (136, 48 y/o, No diagnosis).
Participants described feeling a range of emotions while watching the video, including feeling calm, confident, and happy. Others described feeling sad as they remembered their own cancer journeys and those of their relatives. Several participants mentioned that the video helped them overcome fear and worry by learning more information and knowing they can take actions to prevent future cancers: ‘The video helps one be positive, to remove the fear one has and know more. It’s really good’ (ID: 106, 39 y/o, No diagnosis). Others explained that the video helped them to understand they should not feel guilty if they were to have a harmful genetic alteration and pass it to their kids. One participant said:
Before watching the video I was a little scared and I felt a bit guilty to know the results (…)I feel a bit more calm and I would like to receive information and not feel as guilty as before (ID: 120, 52 y/o, Breast Cancer diagnosis).
In addition to their emotional reactions to the video, some women commented on the emotions displayed by the characters throughout the story. For example, one participant noted the shifts in Rosa’s emotions as she learns more information:
I found it very interesting because at first she didn’t know much about genetic testing. At first she was afraid of what it could be, but then she felt calmer. And with high hopes that it was not something she already had, but something that she could also prevent (116, 44 y/o, No diagnosis).
3.5 | Information learned
Participants noted that the information in the video was clear and easy to understand. They reported learning new information, as most were unfamiliar with HBOC and GCT prior to watching the video. The video clarified misconceptions that HBOC gene alterations are inherited only from the mother’s side and that genetic testing is different from diagnostic testing, as well as other common misconceptions:
Well [I learned] about genes, that a Pap Smear cannot help you know if you have cancer in your ovaries. That is something that I did not know. Also, about breast cancer in men (ID: 136, 48 y/o, No diagnosis).
Women learned about the connection between breast and ovarian cancer and how GCT information can help relatives. Most were unfamiliar with genetic counseling and they learned about it for the first time while watching the video. Many learned for the first time that there is a genetic test to assess HBOC risk. They learned that the test is simple and not painful and clarified misconceptions about the procedure.
I learned about the test, I had no idea if it was saliva, if it was blood, or if they put me in a machine. More than anything, I thought it was a machine that they were going to put in my brain. Today I realized that it is not like that, it is a very easy thing (ID:122, 73 y/o, Breast cancer diagnosis).
The video made women reflect about their own experiences dealing with cancer or accompanying loved ones through the cancer journey and how they would have liked to have this information when they were making important health decisions.
Well, watching the video my first reactions are that I did not have all the information that I needed to have in my case. I suffer from stage four breast cancer. I am sure that if my doctors would have talked to me the way they talked to Rosa, this story would be different (ID: 132, 50 y/o, Breast cancer diagnosis).
3.6 |. Empowerment and motivation for action
Women reflected on how the video helped them learn that gathering information through genetic counseling and testing could inform prevention strategies for them and their relatives.
The most useful thing is to know that if detecting, through genetics, a problem in the information in your genes, you can prevent cancer- or at least try to take precautions, to take preventative treatments. Because I did not know that. Maybe if they had given me all of that information, then I could have done it at an earlier age because with all my family that I had, from both sides, it gives me a high probability of it being hereditary (ID: 132, 50 y/o, Breast cancer diagnosis).
Moreover, women expressed intentions to seek additional information, make health decisions, share information with others and encourage relatives to be screened, and pursue counseling and testing.
I would be delighted to do the test to see if I have or have the probability of having cancer…[The video] has the words that one wants to hear and it tells us what we have to do. I am going to be sincere, I am happy and I am thanking you because in this video I learned… It has helped me a lot because now I am curious and want to do the test (ID: 107, 54 y/o, No diagnosis).
3.7 |. Sharing the video with the Latinx community
Participants were eager to share the video and the information they learned with others including relatives, friends, and co-workers. Participants suggested playing the video within doctors offices’ waiting rooms, schools, community organizations, and churches. They also mentioned that the best ways of disseminating the video would be through social media, given its popularity within the community, especially with Facebook and WhatsApp: ‘Over the television, through phones, the whole world use their phones. WhatsApp – Facebook, everything is part of the internet. It spreads like gunpowder’ (ID: 138, 52 y/o, No diagnosis).
3.8 |. Suggestions for improvement
Several participants suggested changing the characters of Rosa’s mother, who came across as too harsh. Additionally, some women did not identify with Paula, Rosa’s friend, because she did not initially prioritize her health. However, they believed that it was good to include that character in the video because it is an accurate representation of some women’s attitudes in the Latinx community.
Some participants recommended clarifying messages, including the cost of testing, how to access counseling, and how to obtain financial support for genetic testing. Although most said that the duration of the video was appropriate, some felt it was too short and that other scenes could be added including the post-testing counseling session, family reactions to the test results, next steps for relatives, and risk management options in case of a positive result.
4 |. DISCUSSION
This mixed-methods process evaluation study showed that our culturally targeted video was highly acceptable, as assessed both by quantitative and qualitative methods. The video also resulted in high levels of transportation, identification with the main character, and positive emotions. It is important to note that most of the participants in this study had an education of high school or lower, with a significant percentage having completed 6th grade or below. The video was acceptable for Latina women both with and without a cancer diagnosis, and for women at varying levels of education and health literacy.
The high level of transportation is important given that transportation is associated with accepting beliefs portrayed in the narrative (Green & Brock, 2000; Green & Sestir, 2017), and it is one of the identified mediators of behavior change (Green & Brock, 2000; Green & Sestir, 2017). Murphy and colleagues found that transportation was the strongest predictor of knowledge, attitudes, and behavior changes after exposure to a lymphoma story displayed on a television drama (Murphy et al., 2011).
The extensive formative work involved in developing the video (Hurtado-de-Mendoza, et al., 2019) and our partnership with professional filmmakers was crucial in developing a story with characters with whom participants could identify. Indeed, our participants appeared to strongly identify with the main character. Social Cognitive Theory suggests that individuals are more likely to adopt attitudes and behaviors modeled by others who they perceive to be attractive or similar (Bandura, 2003). Thus, participants’ identification with Rosa is critical to potentially motivate behaviors related to uptake of genetic counseling and testing. As expected, affected women had a higher identification with Rosa than unaffected women. However, no differences between affected and unaffected women were found in acceptability, transportation, or emotions, suggesting that the video can target both affected and unaffected women.
Participants had high ratings of positive emotions in the survey (i.e., happy, hopeful, calm). In the interviews, women explained that the video helped them overcome fear or guilt and gain calmness to make important health decisions that can help prevent cancer. Emotions play a central role in processing narratives (Nabi, 2017) and predict behavior change over and above transportation and identification (Murphy et al., 2013). Narratives with high emotional content are more likely to have an impact on behavior change (Graaf et al., 2016). The finding that the video did not elicit strong negative emotions, even among affected women, is important since fear has been associated with defensive reactions, especially if self-efficacy is low (Ruiter et al., 2014). Future studies should further examine the effect of different discrete emotions (e.g., hope) (Yoo et al., 2014) as well as the emotional flow (i.e., emotional shifts as a result of the unfolding story) (Nabi & Green, 2015) on behavioral outcomes.
4.1 |. Practice implications
Most participants suggested that the video could be disseminated to the Latinx community through social media. (e.g., Facebook, WhatsApp, and YouTube). Our video can be easily disseminated through the Internet, and it can be viewed across various platforms including PC and mobile phones. Eighty percent of Latinx access Internet with mobile devices (Brown et al. 2016). Nearly three-quarters (73%) of Latinx smartphone owners have used their phone in the past year to search for information about a health condition (Anderson, 2015). Since participants also reported eagerness to share the video with members of their community, the video will likely be able to spark engagement in social media platforms and foster sharing between online groups. Participants also suggested showing the video in different settings, including hospitals and community centers. Future studies should examine strategies for implementing the video within clinical practice if proven to be efficacious in a larger RCT.
4.2 |. Study limitations
The study had some limitations. The use of a small convenience sample limits the generalizability of the findings. The sample only included women from Central and South America with a large representation of women from El Salvador. Therefore, study findings may not generalize to other Latina women born in the Caribbean and in other countries of Latin America not represented in this study. High acceptability ratings may be due to response bias, such as social desirability, especially since the interviews were conducted in person. We ran several statistical analyses but did not correct for the family-wise error rate; therefore, the likelihood of type 1 error is increased. Health literacy was assessed by a single self-report item. Future studies should include objective performance based health literacy measures (Haun et al., 2014) and should include specific genetic literacy measures (Erby et al., 2008). Despite these limitations, the study has several strengths, including the mixed-methods design. The open-ended interviews provided information to triangulate the findings from the surveys and offered a deeper understanding of participants’ perceptions about the video. We assessed several implementation outcomes, including acceptability and suggestions for dissemination and implementation, which can help speed the research process by informing future implementation strategies that can be tested in hybrid research designs (Curran et al., 2012).
4.3 |. Research recommendations
At-risk Latina women have low awareness and use of GCT (Dean et al., 2015; Levy et al., 2011; Mai et al., 2014), limiting their access to critical medical information for themselves and for their relatives. Few culturally targeted psychoeducational interventions have been developed for at-risk Latinas (Joseph et al., 2010; Sussner et al., 2010). Providers and patients have identified the need to develop education materials in Spanish (Gomez-Trillos et al. 2019; Hurtado-de-Mendoza, et al., 2018). Our culturally targeted video can fill this gap as it can be used as an education tool for patients with varied health literacy and education levels. Additionally, our video is easily disseminable and could be shared in social media. Future studies can also assess different implementation strategies in clinical and community settings. For instance, clinics could share the video with women who have scheduled genetic counseling to see whether it improves patient’s engagement. Additionally, the video can be implemented at community outreach events in which genetic counselors could provide additional information and patient navigators could navigate at-risk women to genetic counseling to help them overcome financial barriers. Finally, the present study showed that our culturally targeted video is highly acceptable among at-risk Latina women. The video triggered high transportation, identification with the main character, and positive emotions in participants. Future studies should also examine the impact of these theoretical constructs and implementation outcomes in GCT uptake.
What is known about the topic
Latina women at risk of HBOC have lower GCT awareness, knowledge, and uptake compared to non-Hispanic Whites. Providers and patients have identified the need to develop culturally targeted education materials in Spanish.
What this paper adds to the topic
This paper presents a process evaluation of one of the few culturally targeted interventions developed for at-risk Latinas. The paper found evidence that a culturally targeted narrative video can trigger theoretical mechanisms of behavior change and it can also generate high acceptability among at-risk Latina women.
ACKNOWLEDGEMENTS
The authors kindly thank the National Conservatory of Dramatic Arts for their important role in the development of the video, filmmaking, and production; and to all the women who participated in this trial.
Funding information
This work was supported by the National Cancer Institute (R03CA191543; Hurtado-de-Mendoza and Sheppard, MPIs; Georgetown-Howard Universities Center for Clinical and Translational Science (GHUCCTS) by Federal Funds; the National Center for Advancing Translational Sciences (NCATS); and the National Institutes of Health (NIH), through the Clinical and Translational Science Awards Program (CTSA) (KL2TR001432; Hurtado-de-Mendoza. PI), and by the Ministry of Science, Innovation, and Universities in Spain (PGC2018-093821-B-I00, FEDER, MICINN, Carrera, PI). The content is solely the responsibility of the authors and does not necessarily represent the official views of the National Center for Advancing Translational Science or the National Institute of Health.
Footnotes
CONFLICT OF INTEREST
Alejandra Hurtado-de-Mendoza, Sara Gómez-Trillos, Kristi D. Graves, Pilar Carrera, Claudia Campos, Lyndsay Anderson, Andrés Gronda, Halyn Orellana, Beth N. Peshkin, Marc D. Schwartz, Paula Cupertino, Nancy Ostrove, George Luta, Nathaly Gonzalez, and Vanessa B. Sheppard declare no conflicts of interests.
HUMAN STUDIES AND INFORMED CONSENT
Georgetown University’s Institutional Review Board approved all study procedures. The study conforms to recognized international ethical standards. All participants gave verbal informed consent prior to participation.
ANIMAL STUDIES
No non-human animal studies were carried out by the authors for this article.
DATA SHARING AND DATA ACCESSIBILITY
The authors welcome inquiries from investigators interested in possible collaboration and use of de-identified data from this study. The data have not been placed into a public repository.
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Associated Data
This section collects any data citations, data availability statements, or supplementary materials included in this article.
Data Availability Statement
The authors welcome inquiries from investigators interested in possible collaboration and use of de-identified data from this study. The data have not been placed into a public repository.
