Study collaborators

This study was informed by the research team and two partners from a community-based organization (hereinafter referred to as the study team). The work of our academic and community partners focused on cancer prevention and control, which made them valuable collaborators in the study. The study was deemed exempt from review by the Institutional Review Board at the National Cancer Institute.

Development of the fotonovelas

Fotonovelas were created to raise awareness of GCT among Latina women at risk for HBOC. The content of the fotonovelas was drawn from an existing culturally targeted narrative video, “Is my Cancer Hereditary? Rosa visits a Genetic Counselor” (Hurtado-de-Mendoza et al. 2019, 2020). This 18-minute video shows a story about Rosa, a Latina and breast cancer survivor diagnosed under 50 years of age. Rosa learns about her risk of HBOC and overcomes barriers to attending genetic counseling. The video shows four main scenes, one in which Rosa learns about HBOC from a doctor, a genetic counseling visit, another in which she shares the information learned with her family, and another with her friend. Further details on the theoretical framework and formative work that guided the video development are presented elsewhere (Hurtado-de-Mendoza et al. 2020). Of note, the term “genetic counselor” was translated into Spanish for the film as “consejera genetica,” and this term was used throughout the fotonovelas. However, the term “asesora genetica” is commonly used throughout Latin America.

Multiple iterations of screenshots from the video were selected (varying angles, close-ups, faces, dialogue, etc.) for the fotonovelas until three final scenarios were agreed upon by the study team as a base to create three distinct fotonovelas. Following the primary scenes of the video, the first fotonovela emphasizes the doctor-patient relationship, where Rosa goes to a doctor’s office and learns about GCT (referred to as the doctor fotonovela). In the second fotonovela, Rosa has dinner with her husband, children, and sister, and shares what she learned about genetic counseling (family fotonovela). The third fotonovela depicts a friend-to-friend conversation about cancer, where Rosa tells a friend about GCT (friend fotonovela). The study team felt that these three scenarios represented the most natural conversations to occur for a newly diagnosed patient. In addition, the conversation with the genetic counselor would have required a longer explanation because the counselor would have gone into detail about the patient’s family history of cancer before making a recommendation for testing.

With the overall goal of increasing knowledge about GCT, the fotonovelas had the same educational content. Specifically, the fotonovelas aimed to cover the following topics: hereditary cancer, genetic testing, the importance of knowing one’s family history of cancer, and understanding that a genetic counselor may recommend genetic testing based on a family history of cancer. In addition, the fotonovelas aimed to discuss common barriers to genetic counseling, such as concerns about cost and insurance coverage. The fotonovelas also aimed to explain the meaning of positive and negative genetic test results and to clarify that genetic testing is not a cancer diagnostic test. Also, that a Pap test is different from a genetic test. The fotonovelas were formatted in a comic book style, each ranging from 3 to 4 pages long (English and Spanish versions of the fotonovelas are available in Appendix 1).

Participant eligibility criteria and recruitmentCancer patients/survivors

Cancer survivors (hereinafter referred to as patients) were recruited as the primary audience of the fotonovelas. Following the 2019 National Comprehensive Cancer Network breast cancer screening guidelines, participants were eligible if they either (1) had been diagnosed with ovarian cancer at any age or (2) had been diagnosed with breast cancer at age 50 or younger or (3) had been diagnosed with triple-negative breast cancer at age 60 or younger or (4) had been diagnosed with breast cancer at any age and had one or more family member diagnosed with breast cancer before age 50, or (5) ovarian cancer, or (6) male breast cancer, or (7) pancreatic cancer. In addition, to be eligible, participants had to be 18 years of age or older, be able to read in Spanish or English, and have no prior participation in GCT.

Relatives of cancer patients

Family members of cancer patients were also recruited as a target audience of the fotonovelas. To be eligible for the study as family members, participants needed to (1) have a family history of breast or ovarian cancer, (2) could not have participated in GCT, and (3) could not have been diagnosed with breast or ovarian cancer. All participants in the role of family members were relatives of the participants in the role of patients, were 18 years of age or older, and were able to read in Spanish or English.

Health workers

Health workers (HWs) were recruited to be part of the study as knowledge experts of the patient/provider interaction in the topic of GCT to provide feedback on the content of the fotonovelas. Therefore, the eligibility criteria for health workers were about their work experience and knowledge of GCT. To be eligible to participate in the study, participants had to (1) be working as health workers for over a year, (2) worked with Latina patients with breast or ovarian cancer, and (3) reported having some knowledge of GCT (self-rated knowledge). Health workers also had to be at least 18 years of age and able to read in Spanish or English.

Recruitment process

Eligibility screeners were developed in English and translated into Spanish for each participant group/role (Appendix 2). The screeners included a brief description of the study and a series of questions for the recruitment team to ask potential participants to determine eligibility. The participant recruitment was led by the partnering community-based organization, which provides navigation and support to Latina women with cancer. A flyer was also developed by the study team in English and Spanish. The staff at the community-based organization shared the flyer at community meetings and called families they had worked with in the past to inform them of the study. Individuals who were interested in the study were screened for eligibility over the phone (i.e., screening call). Additionally, participants’ self-reported age and sex were collected during the screening call. After the screening calls, all interviews were done in-person at various locations. Participation in the interviews was voluntary, and informed consent was provided verbally by phone before the interviews.

Interview guide

The study team developed interview guides to facilitate the semi-structured interviews. The interview guides for patients and relatives included quantitative scales for willingness to discuss cancer with the family and perceived knowledge of GCT (e.g., self-rated knowledge). The interview guide for health workers did not include questions about willingness to discuss cancer with family or knowledge of GCT. All the interview guides also included open-ended questions about the fotonovela (e.g., initial reactions, feedback, and fotonovela comparative questions/narrative preference), the questions are available in Appendix 3.

Quantitative scales - sociodemographic factors

Sociodemographic data collected were self-reported age (in years) and sex (male or female). In addition, language preference was measured as the language the participant spoke most often at home (I always speak Spanish, I speak more Spanish than English, I speak Spanish as often as I speak English, I speak more English than Spanish, or I always speak English).

Quantitative scales - primary outcomes

Cancer patients and their relatives were asked two items to assess pre-post differences in (1) their willingness to discuss cancer with their family using a 5-point Likert scale (1 = very unlikely, 2 = unlikely, 3 = neutral, 4 = likely, 5 = very likely), and (2) whether they had heard of genetic counseling or testing (yes or no). If yes, participants were then asked to self-rate their knowledge of GCT (1 = no knowledge, 2 = some knowledge, 3 = very knowledgeable). The participants that reported never hearing of GCT before, were reported as having no knowledge of GCT. These two items were asked again after the participants had read the fotonovelas. Patients and relatives also completed an additional item post-fotonovela readings, inquiring about their likelihood of seeking additional information on GCT, and this was measured using a 5-point Likert scale (1 = very unlikely, 2 = unlikely, 3 = neutral, 4 = likely, 5 = very likely).

Qualitative data

The open-ended questions focused on the participants’ initial reaction, main idea recall, tone, acceptability/initial thoughts, level of engagement/memorability, format, and intention of sharing the information learned (e.g., “What are your initial reactions and thoughts on the fotonovela?”, “What was the main idea the fotonovela was trying to convey?”, etc.). In addition, participants were asked fotonvela comparative questions. For example, “Which fotonovela was the most memorable one?”, “Which fotonovela would you share with a friend or family member?”, etc.

Participant interviews and procedures

Two members of the study team (R.B. and C.B.) underwent moderator training led by ICF International in preparation for the interviews. These researchers, and occasionally a trained volunteer, conducted in-depth interviews from February to March 2019. All interviews were conducted in person and in a variety of locations, depending on the participant’s preference, including a nearby church, a public library, or the office of the community organization that assisted with recruitment. The interviews were conducted in Spanish or English, depending on the preference of the participant. The average length of the interviews was 45 min (ranging from 30 min to one hour). All participants received a $75 gift card.

All participants conducted individual interviews. After introductions, interviewers read out loud a brief description of the study and explained the purpose of the interview. Interviewers mentioned that all responses were voluntary. Participants were then asked if they agreed to have the interview audio-recorded, with the caveat that their names would not appear on the recording. All participants agreed to have the interview recorded. Once the recording began, the interviewer stated the participants’ identification number, the date of the interview, and the time. Following an “emotional greeting”, where the participants and the interviewer shared something about themselves (e.g., their favorite food, a hobby, etc.), the interviewers began with the quantitative scales. Afterward, participants were given one fotonovela at a time to read. The order of the fotonovelas was random. Once the participant finished reading the first fotonovela, the interviewers proceeded with open-ended questions (e.g. fotonovela-feedback questions).

Data analysisData analysis for quantitative data

Quantitative data, including sample demographics and responses for the pre-and post-fotonovela questions, were entered into the Stata MP 17 program. Frequencies were computed to obtain descriptive statistics and the McNemar’s test was used to examine differences in proportions of the outcomes pre-and post-fotonovelas. The level of statistical significance was set at an alpha of 0.05. To increase power in the quantitative analyses, some response categories for the questions were grouped. Specifically, (1) the status of openness to discussing cancer with their family was categorized as unlikely (including very unlikely, unlikely, and neutral answers) or likely (including likely and very likely answers); (2) knowledge of GCT was categorized as no knowledge and knowledgeable (including some knowledge and very knowledgeable). Additionally, descriptive frequencies were obtained regarding the participants’ willingness to seek further information on GCT post-fotonovelas, measured as unlikely (including very unlikely, unlikely, or neutral) or likely (including likely and very likely).

Data analysis for qualitative data

The company ICF International transcribed the interview recordings verbatim and translated them into English, providing copies of the transcripts in both English and Spanish. Interview transcripts were reviewed after all interviews were completed. Data saturation was not assessed during the course of the interviews. To develop the codebook, three members of the study team (C.B., S.S., A.H.) independently reviewed a selected transcript from each of the participant groups to identify initial themes. These themes were then shared in a meeting with additional research partners for input and refinement (S.G.). Next, two members of the study (C.B. and S.S.) reviewed the remaining transcripts in the original language (Spanish) to identify additional themes. The themes revolved around the interview guides, which focused on knowledge of GCT and suggestions for improving the fotonovelas. The selected deductive codes were (1) the purpose and impact of the fotonovelas, (2) acceptability/initial thoughts of the fotonovelas, (3) intentions regarding GCT after reading the fotonovelas (e.g. sharing information learned), (4) suggestions for improving the fotonovelas, and (5) new information learned from the fotonovelas. An additional inductive code emerged from the interviews and was added to the codebook: (6) perceived barriers to GCT. The team agreed on the final set of codes for which parent and child codes were developed and entered into Dedoose qualitative software. Two researchers (C.B. and S.S.) independently coded the transcripts that were in Spanish and met weekly to reconcile and refine the codes as needed. Following the consensual qualitative analysis principles (Hill, Thompson, and Williams 1997), any coding discrepancies were discussed until a consensus was reached. Once all transcripts were coded, two researchers (C.B. and Y.R.) summarized the results according to participant groups.