A total of 30 community members and 20 healthcare providers participated in the study. Participant characteristics are summarized in Tables 1 and 2. Following the PRECEDE-PROCEED model, we organized our findings into two broad categories: (1) barriers and (2) facilitators of CRC screening, and an additional subsection that includes implementation strategies that were suggested by the participants. Additionally, each barrier and facilitator was classified within a level of the SEM. Figure 1 summarizes our findings of the perceived barriers and facilitators for participation in a CRC screening program in this community at the different levels of the SEM, where all levels interact with each other. Representative examples of participants’ quotes for the most relevant codes are presented in Tables 3 and 4.
Perceived Barriers to CRC screening
Health policy barriers
Barriers at this level were identified only by healthcare providers employed at the Endoscopy Unit at INCan, who reported numerous barriers to the expansion and sustainability of INCan’s current CRC screening program. One of the main barriers mentioned was the lack of interest from decision makers. “This kind of program could fail due to the lack of support of decision makers. I see that many authorities are not interested in colorectal cancer. They don't think for a minute about the possibility of having a prevention program. Some authorities in our hospital are aware of the relevance of this, but not all…” (Endoscopist) Other barriers included budget constraints, insufficient promotion of CRC screening, and dissemination of inaccurate information about CRC in mass media campaigns.
Social context barriers
Poverty was the most commonly perceived barrier to uptake of CRC screening, as reported both by community participants who would be the targets of screening and the primary healthcare providers who serve this population. Participants in all groups consistently brought up concerns about costs of tests and described living conditions that prevail in the area and the daily difficulties that patients face to cover basic needs (e.g., drinking water, food, and medicines). Among elderly male participants, most complained about the challenges of finding work at an advanced age. Among the female participants, several reported being completely dependent on government programs for food and medical care.
Belief systems about cancer, health in general, and medical treatments were identified as another social context barrier. For example, community participants spoke about the commonly shared fatalistic view of cancer as a “death sentence” accompanied by suffering, pain, and expensive treatments that have a negative economic impact on the family. They also spoke about a common attitude of carelessness towards one’s health, reflecting the perception that many take health for granted. They shared the observation that many do not prioritize preventive healthcare and postpone health service utilization until symptoms are severe. Moreover, the role of gender with regard to beliefs about health was consistently mentioned by participants from all groups, with the shared impression that men are less likely to utilize healthcare services than women. Many attributed this to men being less concerned about health than women. Additionally, community participants thought that having a colonoscopy would be harder for men to accept due to the anal penetration associated with the procedure, with possible sexual associations. In the words of one of our male community participants: “For men my age and older, it is very difficult that they will agree (to having a colonoscopy), because they are going to say that they are being raped. They will say: at this age they are going to rape me with the finger? No, you are crazy, I tell you the truth…”
One more barrier related to gender beliefs that could potentially affect the uptake of colonoscopy by women in Mexico is machismo or a sense of masculine pride that includes control over the female partner. Some participants described the possibility that some men may forbid their wives from seeking medical care, particularly if the doctor is a male and the consultation could require a woman to show intimate parts of her body. “We are far from many things, because first we start under the assumption that us women are destined to be nothing more than a housewife, and if you have a controlling and jealous husband, forget it, how do you think you are going to go get this test done?” (Female community participant).
Numerous participants in all groups perceived the lack of knowledge about CRC and CRC screening among community and primary healthcare participants as a relevant barrier. In particular, community participants lacked even basic knowledge about CRC and saw lack of knowledge as a barrier to participation in screening. Few community participants had heard of colonoscopy and knowledge of the procedure was limited. None of our community participants had heard about FIT as an option for CRC screening. The primary healthcare personnel possessed little knowledge about CRC and options for screening.
Finally, there were characteristics of the community members that primary healthcare providers perceived as barriers for a successful implementation of a CRC screening program. The health workers perceived the population they serve as poorly educated. They described it as challenging for community members to understand instructions for participation in diagnostic tests, management and follow-up of chronic conditions (e.g., diabetes). “The patients have low levels of school education, people with maximum 3 years of primary school, so we face many complications because they do not understand how to take the treatment or how to take samples for lab tests and therefore for adhering to treatment and follow-up…(Primary care doctor). Also, the primary healthcare providers perceived the community as accustomed to participating in health programs in response to incentives (e.g. food parcels), which is a common practice with the delivery of social programs in Mexico. The primary care participants also described street violence as a barrier to providing outreach in certain neighborhoods. They also commented on the community’s cultural diversity, with migrants from different ethnic origins, which in their view further complicates the primary care personnel’s usual outreach activities. Finally, primary care providers reported high community turnover due to migration from and to other states in Mexico or even change of residence within the city as a factor which could pose challenges to successful follow-up of individuals with positive FIT results.
Health service organization barriers
Community participants perceived the following potential barriers to participation in CRC screening: (1) previous experiences of patient abuse or mistreatment in healthcare; (2) poor quality of health services; and (3) challenges in doctor-patient communication. Several participants, including primary care physicians, shared negative personal experiences as patients in public health services that have subsequently prevented them from seeking care. These included perceived poor quality of care as well as stories of patient abuse where participants felt they were discriminated against due to their low-income status or appearance. “It is true that security guards (at hospitals) are sometimes very bad, completely inhuman, right? They say: you are not from around here, you need to show me your health service identity card, if not then look elsewhere... If it is already a hardship to get to one hospital, then imagine having to move from one place to another?...” (Male community participant).
Finally, community participants complained about not getting satisfactory explanations from healthcare providers about their health conditions, details for the rationale of medical recommendations related to screening and treatment, and wording that is easy to understand. Also, they said they wished doctors were more empathetic towards their life experiences.
At the primary care clinic level, the most prominent barriers perceived by our two groups of health care personnel participants (primary care and endoscopy unit) were: (1) lack of CRC knowledge among the primary care providers; (2) work overload in the primary care clinic; (3) insufficient infrastructure, personnel, and supplies; and (4) resistance to or lack of interest among primary care personnel in participating in new programs. The second barrier listed appeared to be a central issue: a majority of healthcare providers identified work overload as a significant problem, articulating that it would be very difficult to recommend screening during patient visits due to numerous competing medical priorities, short consultation times during patient visits and a high administrative workload. ”It's only one nurse, one doctor, one social worker and a lot of people, so obviously you cannot cope with the attention for all the patients. You have to organize your times, because there are so many activities. If a procedure gets a bit complicated or takes you a little extra time, you will not be able to perform two or three pap smears. I would like to be able to organize my activities, but there is so much to be done by one person, and also there is so much administrative work...” (Primary care doctor). Additionally, healthcare personnel referred to the daily challenges of doing their job in the midst of insufficient infrastructure, lack of supplies, and inadequate staff. Also, they perceived the lack of interest among staff and their resistance towards participation in new programs as an expression of fear regarding impact on an already heavy workload.
Finally, community participants described as potential barriers (apparently based on previous experiences), the long waiting times for referrals to other hospitals. “And then, you have available appointment slots for consultations at the hospital in more than a month’s time. Now, for example, there are no slots available until March of next year, there are no available slots since October.” (Male lay participant) Additionally, they mentioned complicated administrative procedures, and long distances for transportation to the health services could be barriers for screening completion. Although INCan is located only 10 km away from the community, distance was perceived by the community population as a barrier specific to getting a colonoscopy at the Endoscopy Unit of INCan, as public transportation is limited and can take much longer than private transportation.
At the interpersonal level, one of the endoscopists mentioned that negative colonoscopy experiences among peers might influence the uptake of this procedure. “Well, it's fear, right? Fear of the procedure. More if a neighbor or relative tells them that colonoscopy is very painful. I think that would be a barrier…” (Endoscopist). Among our community participants, nobody knew anyone who had previously undergone a colonoscopy; however, one female participant narrated to the rest of the group a horrible experience with the sedation of her son during an endoscopic procedure and expressed her fear of submitting herself to something similar.
One of the most evident barriers was lack of awareness about CRC among community participants. A majority of participants openly acknowledged not knowing anything about CRC and were unable to identify the location of the colon. Once information on CRC, FIT-based screening, and colonoscopy was provided, the most commonly reported barrier was fear. Participants discussed the fear of finding out they have a serious disease like cancer. Three additional kinds of fear came up in relation with colonoscopy: (a) fear of pain; (b) fear of not knowing what to expect during the procedure, even dying because of it; and (c) fear of embarrassment regarding the actual colonoscopy procedure, particularly among the male participants. Some of our participants perceived it as a dangerous procedure: “That study is dangerous, right? You can die there or something? ... Because they put a tube all the way up to here... I'm afraid I could die…” (Female lay participant).
Community participants also reported lack of time for utilizing health services due to personal obligations and daily life activities. Male participants mentioned fear of losing their jobs, and female caretakers consistently put their families’ needs before their own. Respondents explained that community members have too many competing responsibilities, and preventive health care is not a priority.
According to participants, preferences for traditional rather than allopathic medicine, particularly among people who migrated from rural areas to Mexico City, were identified as a potential barrier to participation in CRC screening. Reluctance to use health services due to distrust of healthcare providers was consistently reported. In the voice of one of our community participants: “Why go to IMSS (main public institution available for the formally insured)? If they don't give an adequate answer to one’s illness, then why see them? It's better this way. I prefer to look for a doctor close-by. Even if I have to pay, it is better quality and it doesn´t take all day long to get an appointment.” Other barriers that were mentioned were lack of self-care, low self-esteem, procrastination, disinterest in health, and low perceived risk of CRC.
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Perceived facilitators for participation in CRC screening
Social context facilitators
Health workers at the primary care clinic perceive that the population they serve has been highly engaged in other health programs offered in the past. They perceive that this openness of the community to participate in health programs could facilitate uptake of CRC screening.
Health service organization facilitators
Facilitators perceived by our community participants at this level were having good doctor-patient relationships, satisfactory communication skills among doctors and having history of positive experiences with health service utilization.
Primary care personnel commented on the need for appropriate work environments. A majority reported that motivation of the primary care personnel to participate in the CRC screening program was key to successful implementation of the program.
Some community participants reported that knowing someone affected by cancer, particularly a family member or a close friend, would be a motivation to participate in cancer screening. Social support was also considered an important facilitator. Many reported that it would be easier for them to participate in screening if a family member or friend encouraged them to do so or shared with them a personal positive experience. “The family sometimes encourages you. Family support is important to encourage you” (Female community participant)
Almost all participants expressed that access to information on CRC and the benefits of screening is an important facilitator. The community participants were very interested in receiving more information about CRC screening and prevention. The information they received in the focus groups made them feel at risk for CRC (risk perception) and in control of detecting it early (perceived benefit of screening test); several mentioned this information as a motivation to participate in CRC screening. Other potential facilitators were that the participants perceived sample collection for the FIT test and return of the kit to the health center as simple procedures. Knowing that the test could be done at the privacy of their homes was seen as an advantage. “The test is not difficult. I can do it by myself and nobody will know, nobody will notice. I take my test where I have to and done” (Female community participant). Finally, having personal experiences with serious illnesses came up as a facilitator. Some participants reflected upon their own negative health experiences and said that they were willing to participate in any screening activity that would prevent them from additional suffering due to health issues.
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Perceived useful implementation strategies to promote CRC screening
Participants also mentioned several implementation strategies that could enhance CRC screening uptake. All types of participants recurrently mentioned that for CRC screening participation to be successful, FIT tests and colonoscopies should be offered at no cost. Additional suggestions for implementation strategies highlighted the importance of involving community-based clinics, including: (1) promotion of CRC screening at local community clinics; (2) recommendation of CRC screening to all patients older than 50 years by primary care physicians; (3) availability of the FIT kits at the local clinic; and (4) ability to receive completed FIT samples at the local clinic. For uptake of colonoscopy, several community participants suggested the procedure be done by a physician of the same gender. Health workers at the Endoscopy Unit suggested mass media campaigns to inform the general population about the benefits of CRC screening and who should be screened. In order to improve their CRC screening knowledge and communication skills, primary care personnel suggested the use of short informative videos. Also, they commented on the importance of observing others to learn medical procedures, which could also be applied to learning to more effective communication skills to explain and promote CRC screening.