Knowledge, Beliefs, and Attitudes About Breast Cancer Screening in Latin America and the Caribbean: An In-Depth Narrative Review.

Purpose Breast cancer (BCA) is the most common cancer and leading cause of cancer mortality among women in Latin America and the Caribbean (LAC), and the number of deaths from BCA is expected to continue to increase. Although barriers to care include the physical accessibility of screening resources, personal and cultural barriers must be explored to understand necessary next steps to increase access to preventive care. The purpose of this in-depth narrative literature review was to explore empiric literature that surrounds the knowledge, attitudes, and beliefs toward BCA screening practices among women in LAC. To our knowledge, this is the first literature review to include articles from all countries and national languages (Portuguese, English, and Spanish) that pertain to this topic. Methods OVID Medline, CINAHL, and Web of Science/SciELO were used to identify articles. Thirty-five articles were included according to inclusion and exclusion criteria. Results Themes identified in the literature included knowledge about screening procedures and cause of cancer; knowledge sources; catalysts and deterrents for screening, such as family support, family history; social support or taboo, fear, self-neglect, cost, and transportation; and the perception of the screening experience. Conclusion In addition to physical availability of resources and health care personnel, there is a necessity for culturally competent community educational interventions across all aspects of BCA screening and prevention. In light of the barriers to preventive health care, providers such as nurses and community health workers are uniquely qualified to provide culturally appropriate and individualized health education to address cultural and psychological barriers to BCA screening.

INTRODUCTION

Breast cancer (BCA) is the most common cancer and leading cause of cancer mortality among women in Latin America and the Caribbean (LAC),[1] and the number of deaths from BCA is expected to continue to increase.[2] Despite who screening recommendations that outline the need for mammography and clinical breast examination (CBE) every 2 years for women age 50 to 69 years,[3] women in low- and middle-income countries may not be able to comply with recommendations because of limited availability of preventive services.[2,4]

Barriers to care are not limited solely to physical accessibility of screening resources; personal and cultural barriers must be explored to take necessary next steps to provide preventive care to women in LAC. The purpose of this in-depth narrative literature review was to describe empiric literature about the knowledge, attitudes, and beliefs toward BCA screening among women in LAC. To our knowledge, this is the first literature review on this topic to include articles from all countries and national languages (Portuguese, English, and Spanish).

METHODS

Search Strategy and Selection Criteria

OVID Medline, CINAHL, and Web of Science/SciELO were searched in March 2017. Searches were conducted using individual and combined keywords and subject headings. MeSH terms were used in PubMed. SciELO was searched using keywords only. MeSH terms used were BCA, breast neoplasms, breast, cancer, cancer screening, Latin America, Latin, America, Central America, Central, America, South America, South, America, Caribbean, Islands, West Indies, West, and Indies. Individual names of each LAC country were also included in the search. References from key articles were hand-searched to ensure inclusion of pertinent studies. Studies were reviewed in the original language in which they were published.

Included article types were limited to peer-reviewed scholarly articles. Articles were excluded if the study was located outside LAC, including US territories; was unrelated to BCA only; was not original research, including reviews, conference posters or presentations, and best-practice guidelines; involved men, health science students or professionals, epidemiologic studies, or genetic screening; was not published in Spanish, English, or Portuguese; or was not specifically related to knowledge, beliefs, and attitudes. This search had no date limits.

RESULTS

The initial search retrieved 744 citations; 105 duplicates were removed. Then, 639 citations were reviewed by title and abstract by the two principal authors and the librarian using the criteria listed in the Methods section. Overall, 431 citations were excluded. The full texts of the remaining 208 articles were reviewed by the principal authors, which resulted in 35 articles in the final analysis after whole-text review and hand search (Fig 1). Article inclusion and exclusion were reviewed independently by two authors (A.L.D. and E.M.M.) for consistency. Of the 35 articles[5-39] included for review (Table 1), references to each screening type varied: breast self-examination (BSE; n = 19), CBE (n = 9), and mammography (n = 22; Fig 2). There were 19, 11, and five articles in English, Portuguese, and Spanish, respectively (Fig 3). In cases when an article addressed more than one screening modality, that article is represented more than once.

Fig 1

Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA) diagram of the literature search strategy, including hand search, resulting in 35 reviewed articles..

Table 1

General Attributes and Findings of Included Articles

Fig 2

Distribution of screening type by country. Articles and countries are represented more than once in cases when more than one screening type is mentioned.

Fig 3

Distribution of article origins by country.

Breast Health Knowledge

The reviewed articles revealed the range of women’s knowledge about BCA and prevention, including the finding that knowledge seems to be related to the degree to which screening and diagnosis are delayed.[20] A study found that Nicaraguan women who were more knowledgeable about breast health were significantly more likely to have a CBE[12]; in Mexico, most women in one study reported having received vague information about BCA and were most knowledgeable about physical changes associated with its presentation.[26] Women in Brazil, when questioned about specific screening tests, revealed that approximately 77% were aware of at least one screening modality, but nearly 40% were not able to correctly name the examination, and approximately 20% were not aware of any examination.[31]

In Mexico, women were more knowledgeable about CBE and mammography guidelines than about BSE.[10] In Trinidad, nearly 90% were aware of the need for regular mammography,[16] though, in Brazil, only approximately half were aware of when screening should begin.[33] Education is a known factor in BCA and screening knowledge: studies from Trinidad[16] and Brazil[24] note associations between education and BCA detection knowledge.

Family History and Cause of Breast Cancer

There is inconsistent evidence about the relationship between family history (FH) and BCA or BSE knowledge. Women in Nicaragua and Brazil with positive FH tended to be more aware of BCA risk factors[28] and to perform BSE.[12] More than three quarters of Trinidadian women knew that FH is a risk factor for BCA.[16] However, according to one article from Brazil, this knowledge was not always associated with BSE knowledge or practice.[27] Although research in Nicaragua pointed to a positive association between FH and BSE, more than half of women studied believed they did not have a personal BCA risk,[12] although the converse was found in a study from Chile, where participants overestimated their risks.[7]

Several studies reported a misperception that trauma causes BCA, from compression of the breast, possibly from the mammogram machine[16,17] or radiation from mammography[17]; to physical trauma, such as blows to the chest that cause injury and produce internal bleeding or incorrect healing that leads to cancer.[17,19,29] Those who believed compression was a risk factor tended to be women with the least education.[16] However, this belief was a motivating factor for some to have mammograms.[29] Other misperceptions were that not having children or breastfeeding were BCA causes and that age did not increase BCA risk.[19] Only 30% of 314 Trinidadian women studied were aware of obesity as a risk factor, and only 12% knew that alcohol consumption increased risk.[16]

Attitudes Toward Cancer Screening

Regarding attitudes toward mammography, one study[8] showed a 97% positive attitude among Brazilian women. Several articles from Brazil show ranges of knowledge, from 7.4% with adequate general knowledge[8] to 94% who have heard of mammography.[6] Seventy-eight percent from another study did not agree that one needs a mammogram instead of a CBE,[20] and 16% considered mammography unnecessary.[23] A major reason for nonperformance in 38% of a Brazilian sample was lack of knowledge of its use to detect asymptomatic cancer.[33] Less than one third of Chilean women viewed mammography as effective for prevention[29]; in Trinidad, although nearly 65% knew mammography could detect nonpalpable masses, less than 50% knew that mammograms were not always capable of detecting cancer.[16]

A sample of Peruvian women had positive attitudes toward the importance of CBE as an issue in their communities.[19] For all examinations, in Mexico and Chile, studies showed that the perception of the clinical experience (competent staff, being treated with dignity, having correct equipment, reasonable waiting times in clinic and until receiving results) was an important factor for use of services.[10,29] In Barbados, some women felt frustration with their clinic experience, because they felt they were not provided enough time or information to make informed decisions.[17]

Facilitators for Care-Seeking Behavior

In addition to positive attitudes about clinic experiences, other factors that encourage care-seeking behavior include the perception of available care: in one study, more than 80% of Brazilian women reported wanting a mammogram if it was available.[24] Despite findings of inadequate mammography knowledge and belief that it was unnecessary, cancer screening was nevertheless the main motivation in 65% of Brazilian women who had mammograms, followed by 16% for existing breast pain.[15] Similarly, more than half of Brazilian women interviewed in one study had mammograms because of existing health concerns, though nearly 40% reported that they would have it if recommended by a physician. However, half cited lack of medical recommendation as a reason for nonperformance, followed by the belief that they would not develop BCA (23%) and lack of symptoms (19%).[31]

Sources of Knowledge

Relationships and conversations with friends,[16,17,20,23,29] family,[16,17,20,23,29] and coworkers[16,17,20] were important information sources about BCA and screening. In Barbados[17] and Mexico,[26] these sources were family members or others with whom women had close relationships and who had had firsthand BCA experiences. Moreover, studies from Jamaica[34] and Mexico[30] showed that knowing someone who has had BCA improved the mammography experience[34] and encouraged repeat mammography.[30]

In Mexico,[26,39] Peru,[19] Brazil,[20] Trinidad and Tobago,[16,23] and Barbados,[17] media, including newspapers, television, and radio, was an important information source. For women in Mexico,[26] Trinidad[16] and Barbados,[17] especially for educated women in urban areas, the Internet was also used.[26] However, in one study, only 1% of Colombian women used it to obtain BCA information.[35] Other sources included flyers from health centers,[23,26] schools,[20,26] and churches.[20] In one study, barriers seemed much higher: in Barbados, information about mammography was so scarce that women instead turned to resources about other, more popular, diseases, such as diabetes and HIV/AIDS.[17]

The degree to which women reported physicians and other health care workers as knowledge sources varied between articles and countries. More than 75% of Trinidadian women[16] and more than half in one study from Brazil,[8] 84% of women in Colombia,[35] and 76.5% of women in Mexico[39] reported these groups as knowledge sources, but nurses and physicians were referenced by only 22% of Tobagonian women and were not their most important source.[23] Similarly, in Chile, only approximately one third from one study used nurses and midwives as important information sources; physician advice was a more important resource,[29] and women who discussed mammography with physicians and were adherent to screening guidelines were less likely to report access barriers.[38] Articles from Barbaos[17] and Peru[19] also cited physicians and other health services to an unspecified degree as reliable sources.

Family was mentioned as an important influence on mammography performance in two articles. Chilean women whose families recommended mammography had a greater sense of self-efficacy to have one,[25] a factor that also encouraged repeat mammography in Mexico.[30] Although some Peruvian women viewed family support as a positive influence in the tendency to seek care, family also had the capacity to limit this behavior: consideration of one’s family (eg, desire to be able to care for children) was a limiting factor for some Peruvian women.[19]

One article from Argentina did not find any link between social support and BSE or CBE performance, but the study sample may have been too small to observe an effect. One article from Brazil, however, found that women who had greater social support were significantly more likely to perform BSE.[5]

Articles from Peru,[19] Barbados,[17] Colombia,[35] Jamaica,[34] Mexico,[26,39] and Chile[29] showed that women fear stigma from the community from the standpoint of sacrificed personal privacy or taboo associated with the disease. In addition to the desire to withhold details from friends or family, Chilean women in one study would only discuss breast health with health professionals with whom they were familiar.[29] Some Barbadian and Mexican women feared negative consequences of BCA diagnosis or the effects of surgery on intimate relationships with a partner, especially in the absence of financial capacity for reconstructive surgery or prosthetics.[17,26]

Deterrents of Care-Seeking Behavior

Fear.

Fear of finding disease or embarrassment from the exam was also an important factor in Brazil[31-33] and, to a lesser extent, in Chile.[38] Articles from Trinidad and Tobago also noted that fear of finding cancer discouraged screening.[16,23] However, Peruvian women reported that, if their CBE had negative findings, their sense of fear and willingness to discuss breast health would improve, as would their willingness to urge others to have the examination.[19]

Self-neglect and fatalism.

Articles from Chile[29,38] and Mexico cited the term flojera—self-neglect from laziness or limited time—as a reason for nonperformance. In Brazil, women similarly referred to negligence or laziness as a reason given by nearly half in one study for mammography nonperformance.[33] Women in Mexico and Brazil cited forgetfulness[35,39] and disinterest[39] as additional reasons for nonperformance. A study from Mexico noted other obligations, such as work and family, that led to decreased time for screening adherence.[26]

Another cultural barrier is fatalistic attitude toward the ability to prevent BCA occurrence or mortality. In Tobago, this was the case for many women, regardless of other socioeconomic determinants.[23] In Chile, although a fatalistic attitude was more common in noncompliant women, approximately half of compliant women also shared this quality.[29] Chilean women who had previously had BCA viewed the disease as a programmed death.[29] Opinions of BCA among Barbadian women were that cancer cannot be found until it is too late, that any lump is cancerous, and that every person has a cancer cell.[29]

Physical barriers and availability of technology.

In most cases that mentioned financial barriers, cost was prohibitive to access; these included accounts from Peru,[19] Chile,[38] Barbados,[17] and Tobago.[23] In Barbados, although subsidized mammography is available to women within the public sector, many were not aware and instead deferred to a private service.[17] Similarly, approximately one third of Tobagonian women were not aware that there was no mammography facility on their home island.[23] In only one article, from Brazil,[15] the majority of women did not reference cost of screening as prohibitive.

In addition to monetary cost, time required played an important role, including the opportunity cost of taking time to attend a clinic.[17,23,29,30,38] Articles from Brazil[18] and Chile[29] noted transportation or long travel distances as important barriers. Women from Trinidad reported this difficulty, and approximately one third of interviewed women on Tobago, who must travel to Trinidad for mammography, saw transportation as a major limitation.[16,23] In some cases, perceptions of organizational barriers alone were enough to deter screening.[37] Time and transportation, however, were not always problematic: Although cost made screening difficult, these were not important limitations for women in Trinidad[16] and Chile.[38]

Additional resource-related barriers, such as lack of physician referral for mammography in Brazil, were reported in several articles.[8] General lack of resource availability was also attributed by women in Brazil[22] and Peru[19] to differences between public and private systems, where women were striving to afford private services because of the perception of their superiority.[19] Peruvian women were also less likely to exhibit health-seeking behavior if they had had difficulties previously.[19] Barbadian women reported that whether they saw physicians through public versus private systems was greatly related to their perceptions of physicians.[17]

Perception of the Screening Experience

Before a first mammography, fear of pain or discomfort was a major deterrent in Trinidad,[16] Barbados,[17] Jamaica,[34] and Chile[38]; in addition, 40% of women were concerned about radiation.[16] However, only 2.5% of the 97% in Jamaica who experienced pain during mammography thought this would be a reason not to return.[40] More than 90% of women in Trinidad were willing to repeat mammography, and 70% reported less pain than they had expected.[16] Similarly, only 7% of Tobagonian women felt that CBE was unpleasant.[23] After mammography, approximately half of Chilean women felt a sense of relief and reward for having taken care of themselves.[29] One article found that, when women in Mexico were satisfied with the screening experience, the tendency to return for repeat screening quadrupled.[30]

In addition to the screening experience as a reason to undergo mammography, women will defer detection to the physicians and follow instructions as a result of trust in their doctors. However, many reported that physicians minimized the importance of a clinical finding, sometimes even for years.[26]

Breast Self-Examination

BSE, although no longer a recommended practice,[41] is second only to mammography in the number of articles that addressed women’s knowledge, attitudes, and beliefs about BCA screening. In Brazil, although 90% of one study population had good attitudes about BSE[27] and approximately 80% in two Brazilian studies received information about BCA,[20,24] the literature review showed a range of general BSE knowledge, from approximately 50% to 87% who had some knowledge about the exam and reasons for performance.[13,20,24,27,36] The range in Brazilian women’s ability to perform BSE ranged from no women able to perform all steps correctly despite knowing about the practice in one study[6] to 27% who could perform it in another study.[24]

In addition to studies from Brazil, studies from Colombia, Grenada, Mexico, Nicaragua, and Tobago were reviewed about BSE.[9-12,23,26] Articles from Colombia found that between 34% and 73% of women knew how to perform BSE and that 68% to 96% believed that BSE should be performed by all women[9,35] In Tobago, 60% of the study population had received education on BSE technique, but only approximately 40% regularly performed it. In Peru, some performed BSE only when they experienced an abnormal sensation in the breast.[19] Similarly, in Mexico, although most women who were asked were aware of the purpose of a BSE, most did not know the proper technique because of insufficient information.[26,39]

Findings among articles reviewed were not consistent about age and women’s attitude toward and tendency to perform BSE: One study found that younger women in Grenada tended to be more motivated to perform BSE[11]; in Brazil and Mexico, though, older women were more likely to know about and practice BSE.[10,13,27] This is contrary to other findings from Brazil that older women tended not to know about or adhere to CBE.[6]

Although one article found that some received information about BCA screening from church in Brazil, church in Grenada could be a deterrent of women’s sense of necessity to perform BSE. However, these women also perceived themselves as more susceptible to BCA, which caused increased perceived barriers to performance.[11] Like the common findings of shame and desire for privacy in articles about CBE and mammography, a sample of Chilean women also identified BSE as a way to maintain privacy for themselves.[29] Two articles[13,27] found that Brazilian women who had more than 4 years of education were more likely to know about and perform BSE; conversely, in Trinidad, there was no apparent relationship.[16] Other sociocultural factors that positively influenced BSE knowledge and performance included living in a city center versus a rural area,[9,13] having a partner or children,[13,27] or being a housewife.[13] As with mammography and CBE, self-neglect was a barrier to performance of BSE.[20]

Two articles assessed the impacts of educational interventions on women’s knowledge about BCA screening. In Nicaragua, authors conducted a training program in the performance of BSE, and results from the program indicated that a majority of women were positive about BSE, were confident in their abilities, and later taught another community member how to perform BSE.[12] In Brazil, through an educational intervention, participants had good improvement in BCA and screening knowledge.[21]

DISCUSSION

This review reveals a diverse picture of the barriers to BCA screening in LAC. Not only are there frequent knowledge gaps about BCA and screening types, but also the reasons for not wishing to attend a clinic or to be screened— including fear, fatalism, and self-neglect as well as the anticipation of discomfort during mammography or CBE—are important factors. Many communities reported difficulty in obtaining services (logistics, time, and cost), and BCA mortality may not subside without proper culturally appropriate education and motivation for seeking care. This education should take into account reported knowledge sources and commonly reported motivations for seeking care.

According to the findings from this review, programs to improve available resources for BCA in LAC will not be sufficient to increase screening and improve outcomes if used alone. In addition to the need for physical availability of resources and health care personnel, there is a need for culturally competent community education about all aspects of BCA screening and prevention, a sentiment supported by many of the articles in this review[6,8,11,12,15-17,20,23,27,30-32,36,38]; for example, there is a potential benefit of pairing screenings for breast and cervical cancer within the same clinic visit.[26] Several articles[10,16,25,29,33] noted the necessity for providers and health centers to offer information related to cancer prevention and to do so in culturally appropriate ways, using providers such as nurses to tailor education strategies to the community and individual.[14]

All databases available at the authors’ institutions were used for this review. This included OVID Medline, SciELO, PubMed, and CINAHL, but the EMBASE database was not an available subscription for this review. In addition, the presence of only one Portuguese speaker on the research team limited the ability of the authors to verify article inclusion and exclusion criteria past the abstract (often translated to English), as was done for articles in Spanish and English. Therefore, this limitation may have introduced bias to the article selection procedure for these articles.

Because this was not a traditional systematic review and because of the volume of citations taken from the initial search results, the professional judgment of the authors was used in lieu of a formal checklist (eg, Preferred Reporting Items for Systematic Reviews and Meta-Analyses [PRISMA]). Though a more in-depth systematic review is warranted in the future, this study elucidates a topic that, to our knowledge, has not been addressed to this point and provides an opportunity to introduce this important topic to the scientific literature.

With regard to limitations within the research articles themselves, there appears to be a need for distinctions to be made between rural and urban communities in some countries, because this has the potential to affect women's attitudes toward screening and physical access. Such distinctions should be addressed in additional research on this topic.

This literature review is, to our knowledge, the first about the knowledge, beliefs, and attitudes of BCA screening practices in LAC that includes articles in Spanish, English, and Portuguese. Of the included articles, nearly half of the information on this topic could have been neglected because of language restrictions that are commonly practiced in literature reviews. In light of the barriers to preventive health care, providers such as nurses and community health workers are uniquely qualified to provide culturally appropriate health education.