J Canc Educ DOI 10.1007/s13187-014-0765-0

Narrative Message Targets Within the Decision-Making Process to Undergo Screening Colonoscopy Among Latinos: a Qualitative Study Marie Oliva Hennelly & Jamilia R. Sly & Cristina Villagra & Lina Jandorf

# Springer Science+Business Media New York 2014

Abstract Colorectal cancer (CRC) is a preventable yet leading cause of cancer mortality among Latinos in the USA. Cultural targeting and narrative messaging are two strategies to increase the low screening colonoscopy rates among Latinos. This study identifies key messages for educational interventions aiming to increase screening colonoscopy used among Latinos and proposes a model to understand the relationship between factors involved in colonoscopy decisionmaking. Individual in-depth interviews were conducted with 12 Latino participants primarily of Puerto Rican descent on the topics of CRC knowledge, barriers and facilitators to colonoscopy use, and the use of narrative in colorectal health messaging. Knowledge about colorectal anatomy and the anesthesia component of colonoscopy procedure is low. Fear of procedure-related pain and fear of treatment-related burden following a cancer diagnosis are significant barriers to colonoscopy. Fear of disease-related suffering and death following a cancer diagnosis and fear of regret are strong facilitators and can be augmented by cancer narratives. Storytelling is commonly used in Latino culture and is an acceptable method to educate the Latino community about CRC screening via colonoscopy. Machismo is a unique barrier to colonoscopy for Latino men via homophobia and reluctance to seek healthcare. A preliminary model to understand factors in colonoscopy decision-making among Latinos is presented. Counseling practices and educational interventions that use culturally targeted narrative health messaging to mediate fears and increase colonoscopy knowledge may increase screening colonoscopy use among Latinos.

M. O. Hennelly (*) : J. R. Sly : C. Villagra : L. Jandorf Department of Oncological Sciences, Division of Cancer Prevention and Control, Icahn School of Medicine at Mount Sinai, One Gustave L. Levy Place, Box 1130, New York, NY 10029, USA e-mail: [email protected]

Keywords Narrative health messaging . Storytelling . Cultural targeting . Culture . Health disparities . Latino . Hispanic . Cancer . Cancer screening . Colonoscopy . Colorectal cancer

Introduction Colorectal cancer (CRC) is the second-most commonly diagnosed cancer among Latinos [1], the fastest-growing minority group in the USA [2]. Although national rates of breast and cervical cancer screening tests among Latinas are comparable to those of their white counterparts [1], the rate of CRC screening among Latinos is lower than that of whites [3]. Consequently, later stages at diagnosis contribute to a disproportionate burden of CRC mortality in Latinos in the USA [4]. Numerous barriers have been reported among Latinos that are specific to screening colonoscopy, a procedure considered the gold standard for CRC screening, as it allows for simultaneous detection and removal of cancerous and precancerous lesions and decreases CRC incidence and mortality [5, 6]. Barriers include structural inequities (e.g., unequal access to care, language barriers) [7], culture-specific beliefs (e.g., medical mistrust, fatalism), and emotional and attitudinal variables (e.g., fear, worry) [8, 9]. Despite interventions on patient, provider, and structural levels that have attempted to address the known barriers [10], this screening disparity persists. Narrative-based health promotion, in which narratives of cultural group members address group values through culturally adapted health messages, is a cultural-targeting strategy increasingly used to encourage healthy behaviors among people of color [11, 12] and has increased cancer screening use in people of color as compared to nonnarrative didactic approaches [13–15]. Fotonovelas, picture-based story books, have traditionally been used in Latino culture for

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entertainment as well as health education. Among Latinos, narrative-based health education tools such as fotonovelas that entertain, engage, and transport the reader into the lives of characters modeling positive health decision-making have increased intent and use of healthier CRC-preventative lifestyle behaviors and screening tests [16–18]. Despite this, no narrativebased low-cost print intervention has yet been designed and studied to increase use of screening colonoscopy among Latinos. In preparation for the development of a culturally targeted, narrative-based fotonovela educational tool to increase screening colonoscopy adherence in a population of low-income, urban Latinos, we conducted in-depth interviews with participants who had and had not completed screening colonoscopy to (a) describe key beliefs that exist about screening colonoscopy, (b) generate a theory of colonoscopy decision-making using a category approach, and (c) identify possible targets within the decision-making process for stories to be used to encourage a reader to complete a screening colonoscopy.

Methods Background/Theory This study was designed to inform the development of a narrative fotonovela intervention based on Theory of Planned Behavior (TPB), a theory used to explore the likelihood of performing a specific behavior based on individual motivating factors [19]. To understand colonoscopy decision-making among Latinos, an interview guide was developed based on grounded theory [20] to assess screening colonoscopy decision-making and storytelling (see Table 1). Participants were asked about their personal beliefs, beliefs of other people in their community, and factual information about CRC and colonoscopy, as knowledge has been associated with completion of colonoscopy in our prior studies [21]. Recruitment and Data Collection Eligible participants included those who were Latino/Latina, were age 50 or older, and had participated in a previous patient navigation intervention study for screening colonoscopy at the study site, an urban hospital located in a community with a high proportion of people of Puerto Rican descent. A theoretical sample of 12 participants was chosen for their previous engagement with the opportunity to schedule and complete a colonoscopy. Participants who had (n=6) and had not (n=6) completed a screening colonoscopy were included in the study. Following an exempt institutional review board (IRB) approval, potential participants were contacted and interviews scheduled by phone. Twelve in-depth, individual interviews were conducted in person over two one-month periods by a single interviewer. The semi-structured interviews were guided by an interview outline (see Table 1) and lasted 45 minutes on average. Open-ended questions were asked in English or in Spanish based on participant preference; probing led to

additional questions about participants’ beliefs and experiences. Before the interview, each participant reviewed an IRB-approved research information sheet; each participant received US$20 in cash at the end of the interview. Interviews were audio recorded and transcribed. Participant characteristics were reported from the paper surveys collected during the previous patient navigation intervention study [22]. Analysis Transcribed interviews were analyzed for all 12 participants by two independent coders (MOH and JRS) by hand and with NVivo software using triphasic methods similar to open, axial, and selective coding of Strauss and Corbin’s grounded theory [20]. The coders met multiple times to discuss the coding strategy for the first half of the interviews, to discuss and resolve any coding discrepancies prior to coding of the remaining interviews, and again to resolve any remaining discrepancies in coding or analysis. All repeated or salient participant beliefs and experiences were collected as in vivo codes during transcription. These were consolidated and sorted into descriptive and values-based code labels upon multiple readings of individual transcripts. Transcript portions illustrating each code were reorganized by gender and colonoscopy adherence, and major trends among groups were summarized into categories, from which a central phenomenon emerged. Categories were first arranged diagrammatically as barriers or facilitators around the central phenomenon; when between-category relationships and between-group differences affirmed the suitability of the TPB model, categories were further framed within each knowledge, attitudes, subjective norms, and perceived behavioral control (see Table 2). Finally, categories were rearranged around the central phenomenon according to relationship and chronology supported by the data, from which a visual representation of the hypothesized model was produced (see Fig. 1).

Results Participant Characteristics Participants were aged 51–65 and self-identified US-born Puerto Rican except two participants from South America who have lived in the USA for over two decades. There were six women and six men. Six participants, three women and three men, had completed a screening colonoscopy in the previous year; of the six nonadherent participants, half was male and half was female. Half of the participants completed high school (50 %), and most fell into a lowincome bracket (83 % with annual income below US$20,000). While all participants endorsed having a regular primary care provider (PCP), adherent participants reported attending their current clinic for less time (mean 3.3 years vs. 7.2 years), having better self-reported health status, and attending fewer doctor visits in the past year than nonadherent participants. All

J Canc Educ Table 1 Interview outline and questions on colonoscopy decision-making, colonoscopy experiences, and the use of storytelling in colonoscopy decision-making CRC knowledge 1. When you hear “colorectal cancer”, what do you think? 2. What do you know about colorectal cancer? 3. What do you know about the different methods to screen for colorectal cancer? Screened participants Screening colonoscopy decision-making factors 1. When was the first time you hear about colon cancer screening tests like colonoscopy? What were your first impressions? 2. Whose idea was it for you to get a colonoscopy, originally? 3. How did you make the decision to get a colonoscopy? Was there anybody or anything that particularly encouraged or inspired you to get a colonoscopy? Was there anybody or anything that made you hesitant about getting a colonoscopy? 4. There are many reasons people don’t get colonoscopies. What are the reasons you’ve heard among your friends and family that people don’t get colonoscopies? Discussed fear, anxiety, medical concerns, family influence, friend influence, lack of provider referral, information about colorectal cancer and colonoscopy. 5. What might encourage people to get a colonoscopy? 6. Have you talked to anybody such as friends or family about your decision to get a colonoscopy? What do they think? Tell me about those conversations. 7. Do you think: a. People from different countries have different views about CRC? Having a colonoscopy? b. Men and women have different views on having a colonoscopy? c. People who are more optimistic have different views on having a colonoscopy? Screening colonoscopy experience 1. Tell me about your experience getting a colonoscopy. 2. How would you describe the process of preparing for the colonoscopy? 3. How did you feel after you had completed the colonoscopy? Unscreened participants Screening colonoscopy decision-making factors: unscreened participants 1. There are many reasons people don’t get colonoscopies. What are the things you’ve taken into consideration in the decision to not get a colonoscopy? 2. Do you think that’s the same for others? What are the things other people who have not gotten a colonoscopy take into consideration? 3. What might encourage you to get one? 4. Have you talked to anybody such as friends or family about your decision to not get a colonoscopy? What do they think? Tell me about those conversations. 5. Do you think: a. People from different countries have different views about CRC? Having a colonoscopy? b. Men and women have different views on having a colonoscopy? c. People who are more optimistic have different views on having a colonoscopy? Storytelling 1. Now I would like to ask you about ways that we can share colorectal cancer screening information. One way to tell others about this health information is through stories. Stories have been used to convey health messages. Because we might use storytelling to teach patients about colorectal cancer screening via colonoscopy, we are currently interested in your opinion about this idea. 2. Have you ever heard of using storytelling to promote a health message? 3. Does a story about getting a colonoscopy sound like something you would want to listen to? 4. Do you think both men and women would want to listen to a story about getting a colonoscopy? Do you think the story should be written differently for men vs. women? 5. How long do you think a story about getting a colonoscopy should be? 6. What should the story have in it that would encourage people to decide to get a colonoscopy?

Attitudes “It’s better to know than to not know because if you • Fear of cancer diseasewait too late then you’re going to have to go through related pain and suffering expensive chemo. I’ve seen what my brother goes • Fear of regret through [with cancer], and I’m not going to go • Desire for peace of mind through that. I’m a coward to go through that.”— • Optimism (to overcome adherent 55-year-old male fear of procedure and “I don’t want to wake up one day saying, ‘God, I possible diagnosis) should have did that test’.”—nonadherent 64-year-old male “If there’s something there, it’s curable. If not, at least you know.”—adherent 57-year-old male “You should be optimistic on everything. There’s going to be fear always, but you have to overcome that.”— adherent 52-year-old female Perceived behavioral “I do my mammogram, I do my PAP smear, I do control everything.”—adherent 52-year-old female • Personal identity “If a doctor tells you to do it, you have to do it. It’s associated with mandated. You’re obliged to do it.”—nonadherent 54proactive health year-old male maintenance • Belief that colonoscopy is an accessible healthcare procedure • Colonoscopy perceived as mandated by physician

Knowledge • Preventive nature of asymptomatic screening colonoscopy

“You can avoid it… It can be treatable if you catch it on time.”—adherent 52-year-old female

Barriers and facilitators to colonoscopy among Latinos

Facilitators to colonoscopy

Table 2

“Colonoscopy is important to look for infection, inflammation, holes in the stomach… Sometimes people don’t fall asleep and they can feel the camera inside, and that hurts.”— nonadherent 54-year-old male “[I want] more positive proof that it’s not going to harm you and they’re not going to scrape you and make you bleed.”—nonadherent 51-year-old male “I’m afraid to find that out… because I don’t know how I’m going to deal with it… I don’t want no more pressure.”—nonadherent 54-year-old female “People who are optimistic believe their bodies are fine and so they don’t need any colonoscopies or any exams.”—nonadherent 64-year-old male

Subjective norms “Especially if they’re macho, [they think,] ‘Ain’t • Homophobia, via machismo nothing going up my butt’.”—nonadherent • Reluctance to see physicians, including 64-year-old male via machismo “Men are punks about going to the hospital… • Negative opinions of colonoscopy from strangers Their feet could be falling off and they say ‘No, I’m not going to the hospital. I can fix it’.”—adherent 52-year-old female Perceived behavioral control “It’s calling them to make those appointments • Anticipated difficulty making colonoscopy because [they put you on] hold then you’re waiting appointment and waiting, then they want to tell you the next available • Anticipated difficulty and discomfort appointment is in five months. I’m not waiting five completing fasting and laxative months. I’m not waiting three months. If you want this done, let’s do it now that you’ve got me.”—adherent 55-year-old male “I used it as an excuse, saying I’m not going to take laxatives… [But] I’m a Christian man—of course I’ve fasted before. And I take laxatives every ten months.” —adherent 57-year-old male

Attitudes • Fear of procedure-related pain and discomfort • Fear of cancer treatment-related healthcare burden and suffering • Embarrassment about body exposure during procedure • Optimism (invincibility to disease)

Knowledge • Lack of understanding of colonoscopy procedure • Lack of understanding of anesthesia protocol and effects

Barriers to colonoscopy

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J Canc Educ Fig. 1 A potential model for colonoscopy decision-making among Latinos

Awareness

Colonoscopy decision-making process Atudes

Subjecve norms

Behavior

Perceived behavioral control

Barriers to colonoscopy Opmism Fear of cancer treatment-related healthcare burden Fear of procedurerelated pain

Homophobic associaons Reluctance to see physicians

Ancipated difficulty making colonoscopy appointment

Higher-priority health issues

Knowledge about colorectal cancer screening

Belief in accessibility of screening resources

Cancer narraves

Scheduling of colonoscopy appointment

Opmism

Paent navigaon

Fear of cancer disease-related suffering and death

Proacve health maintenance identy

Fear of regret Desire for peace of mind

Colonoscopy compleon

Physician recommendaon as mandate

Facilitators to colonoscopy

but one participant had at least one friend or relative with a prior cancer diagnosis. Adherent participants reported more friends or relatives with both all-cancer and CRC-specific diagnoses or death than nonadherent participants. One nonadherent participant had been personally diagnosed with non-colorectal cancer. All participants reported knowing others who had completed colonoscopies, including two nonadherent participants who each reported over ten relatives who had completed screening colonoscopy. Knowledge and Beliefs About CRC and Colonoscopy Participants described learning about CRC and colonoscopy primarily from relatives, friends, and television shows. While all participants reported at least one discussion with their PCP about having a colonoscopy, none knew of alternate methods of CRC screening, such as fecal occult blood test (FOBT). Nonadherent patients had particularly low knowledge of colorectal anatomy and the purpose of the procedure, e.g., colonoscopy was confused with digital rectal exam or thought to search for stomach pathology. While adherent patients described receiving full anesthesia, nonadherent patients were concerned with feeling significant discomfort from the colonoscope: “Sometimes people don’t fall asleep, and they feel the camera inside, and that hurts,” stated a nonadherent male. Lack of understanding about the details of both the colonoscopy and anesthesia portions of the procedure was expressed to be a barrier to colonoscopy adherence. Attitudes: How Do I feel About Getting a Colonoscopy? Fear contributed as both a barrier and facilitator to colonoscopy adherence. Specifically, fear of procedure-related pain (e.g.,

from penetration, internal scraping, or sitting down after the procedure) was described as a strong barrier; this fear was attenuated by hearing of non-painful colonoscopy experiences or by trusting their PCP’s assurance that the procedure is performed while fully asleep. Fear of possible CRC diagnosis as a result of the procedure was also a strong barrier to colonoscopy adherence for nonadherent participants via fear of burdensome medical appointments and extensive treatment, rather than via fear of death. A nonadherent female explained: “I’m afraid to find out because I don’t know how I’m going to deal with it. I don’t want no more pressure.” Conversely, adherent participants were more tolerant of the uncertainty that a colonoscopy may or may not result in a cancer diagnosis; adherent participants focused on the relief they would feel on receiving negative colonoscopy results (peace of mind), the benefits of early diagnosis, and a trust in modern medicine to cure cancer if found. An adherent male explained: “If there’s something there, it’s curable. If not, at least you know.” Fear of cancer disease-related suffering was also found to be a strong facilitator to colonoscopy adherence, and adherent patients described more detailed and extensive suffering of friends and relatives with late-stage cancer as compared to nonadherent patients. An adherent male explained: “It’s better to know than to not know because if you wait too late, then you’re going to have to go through expensive chemo. I’ve seen what my brother goes through [with his cancer treatment], and I’m not going to go through that. I’m a coward to go through that.” Stories of friends’ and relatives’ cancerrelated suffering also augmented fear of regret, another facilitator for colonoscopy adherence among both adherent and nonadherent participants. Optimism was described as both a

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barrier and a facilitator to screening colonoscopy. On one hand, optimistic people were described as tending to believe their bodies will remain fine in the future, and therefore, screening tests are unnecessary; on the other hand, positive thinking was described to attenuate any fear of the procedure and its consequences. Men also expressed embarrassment of exposing one’s body during the procedure as a potential barrier. Subjective Norms: What Do People in my Community Think About Getting a Colonoscopy? Both male and female participants perceived women as more likely to talk about and get a colonoscopy; several male participants shared that they do not discuss health issues with friends and thus would not even know if a friend had previously completed a colonoscopy. Both male and female participants identified two elements of machismo that uniquely prevent Latino men from completing a screening colonoscopy: homophobia and reluctance to see doctors. The use of words such as “penetration” and “lubricate” illustrated the association among Latino men between the colonoscopy procedure and homosexual intercourse. Participants explained that, for some, a man might be considered less “manly” if he gets a colonoscopy: “Especially if they’re macho, [they think,] ‘Ain’t nothing going up my butt’,” explained an adherent male. Reluctance to see doctors was another barrier to colonoscopy described as a common sentiment among Latinos and more so among Latino men. Even among participants with many relatives who have completed colonoscopies, their encouragement was not described as a strong facilitator for colonoscopy adherence by either adherent or nonadherent participants. Conversely, participants readily and vividly recalled negative colonoscopy procedure beliefs expressed by strangers. A nonadherent male said: “I know that I should [have a colonoscopy], but I’m 50/ 50 between… Listening to what people say, people’s negative opinions… makes you wonder, like they can make a mistake or hurt you...” Perceived Behavioral Control: Is Getting a Colonoscopy Up to Me? Both adherent and nonadherent participants believed they could get a colonoscopy if they wanted to. The adherent participants who initiated the conversation about having a colonoscopy with their doctor had knowledge of screening colonoscopy from a source other than a doctor (e.g., due to a family history of CRC). For these participants, getting a colonoscopy was consistent with their personal identity regarding being proactive about their health. The female participants particularly identified themselves as people who would complete a screening colonoscopy because they are the type of people who take care of their health, drawing comparisons to going to routine checkups and being up to date on breast and cervical cancer screening: “I do my mammogram, I do my PAP smear, I do everything,” said an adherent female.

Interestingly, having a strong sense that getting a colonoscopy is not a personal decision, but an act obliged by the doctor-patient relationship, was also a strong facilitator to colonoscopy adherence: participants who viewed a recommendation by their physician as mandate or who did not second-guess their physicians readily made the decision to get a colonoscopy. One adherent female commented that her physician “recommended that it [a screening colonoscopy] would prevent cancer, and since I haven’t done it, it would be great to take advantage of the opportunity now. Instead of going home and thinking about it, everything was done at that time.” All participants agreed that having a physician’s recommendation was essential: most participants said that having a colonoscopy was their physician’s idea, and they would not have independently initiated conversation about CRC screening, citing unfamiliarity with the practice of screening for CRC. Anticipated difficulty making a colonoscopy appointment (both length of phone call required to make the appointment as well as length of time to next available appointment date) was a major constraining factor expressed by both adherent and nonadherent male participants. The scheduling assistance by a patient navigator removed this barrier; two adherent male participants singly credited the patient navigation for their colonoscopy adherence. One said: “Some appointments I don’t want to come to because you have to call [over and over again], and for colonoscopy it’s the same. You’re on hold and you’re waiting and waiting. Then they say we’ve got to wait for your insurance, so I say ‘I’m tired of waiting!’, so I hang up. [But with] the patient navigator, they [schedule the appointment for you] and it helps.” Participants explained that, as fasting and laxative use are common to Latino religious customs and home healthcare, the anticipated difficulty of fasting and taking a laxative may not be true barriers to screening and instead may be used among Latinos as “excuses.” Moreover, these concerns were easily overcome by reassurance from friends with colonoscopy experience, and female participants particularly reported liking the experience of taking laxatives in preparation for a colonoscopy; they reported feeling “cleansed”, “lighter”, and “like a brand new baby”. The Intent-Behavior Gap: Colonoscopy Will Be Deferred for Higher-Priority Health Issues At the time of the interviews, all nonadherent participants expressed intent to complete a colonoscopy. Three of the nonadherent patients cited emergent or highly consuming health issues (e.g., hypoglycemic reaction, panic attack, and a recent month-long hospitalization) as the primary reason preventing them from scheduling a colonoscopy appointment or, in some cases, from completing the intended procedure during previously scheduled colonoscopy appointments. Of note, five male participants (adherent and nonadherent) but no female participants reported making multiple colonoscopy appointments they did not intend to complete.

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One said, “[My girlfriend] said to me, ‘I knew you wasn’t going to go so [that’s why I didn’t] bother you two days in advance [to begin taking laxatives]’. It’s funny, but it’s the truth.” The Importance and Use of Stories in the Decision to Get a Colonoscopy Both male and female participants described the use of stories in daily life—for example, learning practical skills from parents through stories or hearing testimonials at church— and agreed that stories are useful ways for community members to learn how to take care of their health. Participants reported that people learn about screening exams by hearing others’ stories and experiences, and both male and female participants drew the comparison to women learning about breast cancer screening from women who had already received mammograms. All participants expressed personal interest in hearing the story of someone’s experience getting a colonoscopy as well as the belief that both men and women would be equally interested in hearing another’s colonoscopy story. When asked whether she would be interested in hearing a colonoscopy story, one nonadherent female said, “Yes, I would [be]. If you’re going to tell it in a story, it should be a good story to make people understand and maybe change people’s minds.” Participants agreed that the emphasis of a narrative should be on the colonoscopy procedure rather than colorectal cancer, and they also agreed that the protagonist’s gender would not be important in a story about colonoscopy, as the procedure is the same for men and women. While participants agreed that any colonoscopy story should be forthcoming in describing both possible positive and possible negative consequences of the procedure; they also described the importance of describing the benefits of early detection, emphasizing the brevity of the procedure, and including messages of reassurance, such as, “There’s nothing to worry about, it’s going to be quick and easy, and it’s good for you,” as one adherent female offered. Participants also pointed out the educational opportunities of a narrative print format by including illustrations of the procedure and anatomy and providing examples of different diagnostic outcomes of getting a colonoscopy.

Discussion The purposes of this study were to further understand the factors that influence the completion of a screening colonoscopy among Latinos and to identify essential targets of culturally appropriate health messages for use in a narrativebased fotonovela intervention to increase screening colonoscopy among Latinos. Overall, once a patient has acquired awareness about CRC screening, for example via a physician referral, there are a number of attitudes, norms, and control perceptions that act as facilitators and barriers to scheduling and completing their colonoscopy appointment. Stories of

others’ cancer experiences can facilitate colonoscopy use by mediating fear-based attitudes. Further, once willing patients enact their intent to complete a colonoscopy by scheduling an appointment, higher-priority health issues may occur that deter completion of a screening colonoscopy. We propose a model (see Fig. 1) to explain how factors that emerged from the in-depth interviews influence the decisionmaking process to complete a screening colonoscopy among Latinos. Consideration of undergoing a screening colonoscopy requires two components of colonoscopy awareness: the knowledge about CRC screening and colonoscopy and the belief that resources are available to get a colonoscopy if wanted. A physician recommendation during a clinical visit often provides both; however, future educational and counseling interventions should consider that some audience members (particularly those with a family history of CRC) may have already decided to get a colonoscopy. Similarly, messaging that increases CRC screening knowledge without addressing access to screening services may be ineffective. The process by which an individual (one with knowledge of and access to screening services) decides to make a colonoscopy appointment is a balance of fears, and it is by mediating this balance that stories influence intent to undergo screening colonoscopy. Familiarity with stories of friends and relatives who have suffered from late-stage cancer may magnify both the fear of cancer disease-related suffering and death and the fear of regret, two strong contributors toward a positive attitude to colonoscopy use. On the other hand, fear of treatment-related burden following a possible cancer diagnosis strongly contributed to a negative attitude to colonoscopy use, but was not affected by stories of others’ cancers. Thus, stories that emphasize cancer-related suffering and regret may be effective tools to encourage and increase screening colonoscopy use. Further, the “fear of cancer diagnosis” is better understood as two fears that function in opposite directions, and this distinction should be applied to the design of future cancer screening studies and messages for Latinos. Fear of pain and discomfort from the procedure itself was also a major concern, highlighting the importance of pairing colonoscopy counseling with anesthesia education in clinical practice. Narrative communication is hypothesized to change beliefs and behaviors through its ability to decrease counterarguing [23]. Specifically, engagement with storyline and identification with characters are elements that have been posited to decrease counterarguing by blocking the reader’s ability to critically reject persuasive messages [24], which may explain the influence of certain stories, but not others, on study participants’ colonoscopy decision-making process. Of possible protagonists, friends and relatives are generally liked, trusted, and perceived as similar and credible—elements that increase identification—and their stories of suffering may evoke stronger emotional responses through both greater identification as well as through experienced physiological reactions, resulting

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in greater engagement [25]. Greater degrees of identification and engagement may therefore explain that it was the adherent participants who more often recalled cancer stories of friends and relatives, and more vividly described their suffering, rather than nonadherent patients; adherent participants’ screening behavior perhaps results from a decreased ability to resist a PCP’s recommendation for CRC screening. Accordingly, benign stories of friends’ and relatives’ colonoscopy experiences or their increased number of medical appointments during cancer treatment would not be expected to influence colonoscopy beliefs or behavior. This study sheds additional light on how concepts such as machismo and optimism, two known factors in this population [26], are understood among Latinos. Machismo was presented by participants in the context of the male ego and affected colonoscopy decision-making via reluctance to seek medical help and via a socially reinforced concern with homosexual implications. Unlike a previous finding that a more optimistic attitude may encourage colonoscopy adherence [26], study participants expressed more nuanced views on optimism both as a barrier to colonoscopy as well as a strategy to overcome the fear of a cancer diagnosis and thus facilitate a colonoscopy. Future studies involving these concepts should address their multiple components. While encouragement and reassurance from friends and relatives who have completed colonoscopies did not strongly influence participants’ personal decision to get a colonoscopy, the one individual whose opinion about CRC screening is highly regarded is the physician. For some Latinos, a PCP’s recommendation for colonoscopy is understood as a mandate. Interestingly, while this removal of patient agency facilitates colonoscopy adherence, so does the assumption of full control of one’s health: particularly for women, personal identification as a person who takes care of their health (e.g., breast and cervical health) contributed to a positive attitude toward making a colonoscopy appointment. Successful messaging strategies may include appealing to both perspectives. Finally, the anticipated difficulty of making an appointment is a system-level barrier that was particularly concerning to male participants. This underlines the importance of designing health systems to maximize the accessibility of existing healthcare resources, for example, through provision of patient navigation services, which can eliminate this barrier to colonoscopy. However, a scheduled appointment does not always lead to colonoscopy completion. This nonadherence with a scheduled colonoscopy appointment can be understood in two ways. Among patients who desire a colonoscopy, higher-priority health problems (e.g., emergent or consuming) may prevent completion of a colonoscopy. On the other hand, those who do not desire a colonoscopy at the time of appointment are unlikely to participate. Better PCP understanding of a patient’s intent to complete colonoscopy before scheduling may be an important step toward alleviating systemic burden of canceled appointments.

This study has several limitations. First, all participants live in an urban environment, most were US-born Latinos, and all had previously taken part in a patient navigation study at the study site, in which they received education, appointment and prescription assistance, as well as culturally specific encouragement to complete a colonoscopy; results may therefore not generalizable to nonurban, non-navigated, or immigrant Latinos. Second, recruitment to this study did not actively target people of Puerto Rican descent; however, the demographics of the local population resulted in a largely Puerto Rican sample for this study. The findings do not represent all Latino subgroups, and further research with a more diverse sample may be warranted. Third, all colonoscopies were covered by patients’ insurance, so cost was not discussed in the interviews. Fourth, while 12 participants may be a small number from which to draw conclusions about a complex decision-making process, we did achieve saturation; thus, the proposed model is a good starting point but needs further verification. Further, this study was conducted in a site with open access to endoscopy; thus, results may not be applicable at other sites where PCPs are unable to make direct colonoscopy referrals. In conclusion, this study highlighted the influence of a number of known facilitators and barriers to screening colonoscopy among Latinos. Among these, fear of cancer treatment-related burden, fear of colonoscopy procedure especially due to lack of knowledge about anatomy and anesthesia protocols, lack of physician recommendation, and elements of machismo were found to be significant barriers. On the other hand, fear of cancer disease-related suffering, fear of regret, patient navigation, and identity related to adherence to other cancer screening tests such as mammography were significant facilitators. These factors are important targets of health messages for future interventions that intend to increase screening colonoscopy among Latinos in the USA. Finally, as stories have the ability to mediate the fears that influence colonoscopy decision-making among Latinos, the proposed model also offers targets for rational application of narrative health messaging to colorectal cancer prevention strategies in this population.

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