Abstract

This article aims to map the global scientific production on social or cultural representations and breast cancer in Public Health and discuss how it is presented in the literature. We conducted a scoping review guided by the question: “How are cultural or social representations in the context of breast cancer described in the global scientific Public Health production?”. We searched for works in five scientific literature sources and included 45 studies. The analytical process followed the content analysis technique in the thematic modality. The analyzed collection can be thematized into the following categories: (1) Compromised body image and interactions, (2) Spirituality, (3) Loss of control over life, (4) Going on with life, and (5) Association with ethnic-racial issues. Despite advances in biomedicine, we observed that representations of breast cancer still have metaphors associated with cancer in the last century. We conclude that, among other aspects, care for women with breast cancer cannot be guided only by biomedical and epidemiological approaches since this disease is traversed by knowledge that competes with these approaches.

Key words:
Breast cancer; Cultural representations; Social representations; Symbolic dimension

Introduction

Breast cancer is the disease with the highest incidence among women in Brazil and worldwide. According to the National Cancer Institute, more than 73,000 Brazilian women were diagnosed with the disease in 2022¹1 Instituto Nacional do Câncer (INCA). Dados e números sobre câncer de mama: Relatório anual. Rio de Janeiro: MS; 2022.. More than 2.2 million women are affected globally, representing more than 11% of all cancers in the world population. Understanding breast cancer not only as a disease located in the organ but as a systemic disease has broadened the biomedical view of the treatment.

In this field, surgery to remove the tumor is no longer the fundamental stage of therapy but one of the many stages the individual will have to cross. Chemotherapy, radiotherapy, and hormone blockers are, for example, additional treatment modalities to surgery that have achieved significant improvements in survival curves and progression-free time over the years.

Besides the biomedical perspective on breast cancer, we should take a look at how this disease stands in the Brazilian population. Based on epidemiological studies, the Ministry of Health²2 Instituto Nacional do Câncer (INCA). Fatores de risco [Internet]. 2023 [acessado 2023 jul 8]. Disponível em: https://www.gov.br/inca/pt-br/assuntos/gestor-e-profissional-de-saude/controle-do-cancer-de-mama/fatores-de-risco.
https://www.gov.br/inca/pt-br/assuntos/g... asserts that environmental factors are associated with at least 80% of cancer incidence, and genetic factors account for 5-7% of its etiology. This percentage reaches 25% when it appears before the age of 35.

Along with the biomedical and epidemiological aspects of Public Health, understanding the representations that coexist with medical advances in this disease can be important for the policy, the organization of health services, and cancer care.

One way of achieving this understanding is through studies on cultural representations. Cultural representations underpin social representations and affect the subjectivity of a social group through characterizations, allowing people to address the world around them. They consist of mental and public representations of a specific group in a community and can be positive (xenophilic) or negative (xenophobic) in a rejection of the other social group³3 Rubenfeld S, Clément R, Lussier, D. Lebrun M. Auger R. Second Language Learning and Cultural Representations: Beyond Competence and Identity. Language Learning 2006; 56(4):609-632..

Female breast cancer representations can be socially constructed through meanings related to cancer in general, the female body in specific, and from the experience of living with this pathology⁴4 Gomes R, Mendonça EA, Pontes ML. As Representações sociais e a experiência da doença. Cad Saude Publica 2002; 18(5):1207-1214.. Thus, we understand that knowledge marginal to traditional science can interfere with producing scientific knowledge. However, it is ultimately up to the former to define what is or is not scientific knowledge⁵5 Nascimento GC, Córdula EBL. A produção do conhecimento na construção do saber sociocultural e científico. Rev Educ Publica [periódico na Internet] 2018 [acessado 2023 jul 8]. Disponível em: https://educacaopublica.cecierj.edu.br/artigos/18/12/a-produo-do-conhecimento-na-construo-do-saber-sociocultural-e-cientfico.
https://educacaopublica.cecierj.edu.br/a... .

By advancing the discussion about the counterpoint between biomedicine and breast cancer representations, demythologizing can occur regarding death and female failure. In this discussion, it may be essential to bear in mind that women’s bodies are not just objectified through cultural meanings but are the condition of existence in the world and culture⁶6 Csordas TJ, editor. Embodiment and Experience: the existential ground of culture and self. Cambridge: Cambridge University Press; 1994.. The body allows access to the world. Butler⁷7 Butler J. Bodies That Matter: on the discursive limits of sex. New York: Routledge; 1993. describes bodies as instruments of pain, pleasure, illness, and violence, which, for women, is not a mere representation. A woman who loses her breasts or her hair is exposed to the discredits socially imposed on her. It is a subject incapable of reproducing, being sexualized, and operating in the ways of capitalism through work.

Based on these initial considerations, it is understood that by discussing what the literature has been producing about the representations of breast cancer, there could be a shift from an exclusive focus on the biological model to “preventive practices that consider the subject’s meanings demarcated by their social relationships”⁴4 Gomes R, Mendonça EA, Pontes ML. As Representações sociais e a experiência da doença. Cad Saude Publica 2002; 18(5):1207-1214. (p. 198). In this sense, this scoping review aims to map global scientific production on social or cultural representations and breast cancer in Public Health and discuss how this event is presented in the literature.

Methods

We performed a scoping review based on the methodological framework of the Joanna Briggs Institute⁸8 Wendel S, Secoli SR, Alves V. A abordagem do Joanna Briggs Institute para revisões sistemáticas. Rev Lat-Am Enferm 2018; 26:e3074.. A research protocol was registered with the Open Science Framework (OSF)⁹9 OSF [Internet]. Osf.io. 2023 [cited 2023 jul 8]. Available from: https://osf.io/.
https://osf.io... .

Research question

Question: How are cultural or social representations in the context of breast cancer described in global scientific production in Public Health? We opted to work with an open-ended and broad question to obtain a greater diversity of scientific production on the subject.

Inclusion and exclusion criteria

The inclusion criteria were primary and secondary studies, documents, and reports available in English, Portuguese, or Spanish, which addressed issues related to social and cultural representations of breast cancer in the context of Collective or Public Health. Studies that referred to contexts other than Public Health addressed social and cultural representations outside the context of breast cancer, or were published in languages other than those mentioned were excluded.

The methodological quality of the included studies was not assessed, as it was not part of the inclusion criteria and is optional in scoping reviews⁹9 OSF [Internet]. Osf.io. 2023 [cited 2023 jul 8]. Available from: https://osf.io/.
https://osf.io... . The selected studies were transferred to the Zotero software.

Data sources and search strategies

The key words in the three languages used to access the sources were: “Poder simbólico”, “Representaciones Sociales”, “Social Representations”, “Representações sociais”, “Estigma”, “Alterações de autoimagem”, “Stigma”, “Dimensão simbólica”, “Câncer de mama”, “Neoplasias da mama”, “Câncer mamário”, “Breast Neoplasms”, “Neoplasias de la Mama”, “Breast cancer”, “Saúde Coletiva”, “Saúde pública”, “Public health”, “Salud Publica”, “Etnografia”, “Antropologia”, “Imaginário social”.

The process of identifying relevant studies relied on the journal databases of the BVS Regional Portal, PubMed, Scopus, Web of Science, OASISbr, and Dimensions. These databases have a broad coverage of publications in Health, which justified our selection. The following search strategy was used: Knowledge Translation [Title] OR Translational Medical Research [Title/Abstract]. The authors developed the search strategy.

Data extraction and analysis

The studies selected for this review were organized in an Excel® spreadsheet with the following information: author(s), title, country of origin, and excerpts describing the main results of interest to this review. This stage consisted of summarizing the essential elements of each study, using the descriptive analytical structure to examine the text of each article.

Most of the studies’ qualitative results were analyzed using the content analysis technique adapted by Gomes¹⁰10 Gomes R. Análise e interpretação de dados de pesquisa qualitativa. In: Minayo MCS, organizadora. Pesquisa social: teoria, método e criatividade. Petrópolis: Vozes; 2007. p. 79-108. and the thematic modality described by Bardin¹¹11 Bardin L. Análise de conteúdo. Lisboa: Edições 70; 1979.. The results are presented descriptively and in tables.

Results

The search retrieved 117 records, and 114 studies remained after excluding 3 duplicates. After reading the titles and abstracts, 69 papers were excluded because they did not include elements relevant to the research question. The full-text article was retrieved for reading by both readers when a study’s relevance was not described in the abstract. We aimed to verify whether they adequately addressed the research question. The 45 studies that remained in the selection were read in full. The most common reasons for excluding studies were that they did not discuss social representations or that they did not address the breast cancer setting. Using the Prisma16 recommendation, a flowchart was drawn up to select the publications in this review (Figure 1).

General characteristics of the collection

The collection of sources analyzed has several characteristics, particularly the place of production, the focus of the studies, and the methodological design (Chart 1). All continents were covered in the 45 articles analyzed: 15 were from North America, 10 were from South America, 8 were from Asia, 7 were from Europe, 4 were from Africa, and 1 from Central America. Six of the South American studies are from Brazil.

The six studies’ objectives or focuses include cultural meanings and social representations. We have women’s experiences, ethnic/racial issues, belief/spirituality, psychological/psychosocial aspects, information/knowledge/awareness; each of these focuses is found in four studies. Regarding methodological design, most studies are characterized as primary studies (36), of which 28 are qualitative, 7 are quantitative, and 1 is quantitative-qualitative. The remaining studies (9) are essays or reviews. Three studies published in the second half of the 20^th century and 42 in the current century.

Mapping and discussion of production themes

Not all the studies address specifically cultural representations or social representations. However, in a more in-depth reading of the studies that do not make these representations explicit, we can infer that the discussions are aligned with the symbolic dimension of breast cancer, which somehow characterizes cultural or social representations.

The literature shows that social representations include concrete themes such as bodily changes, including the diseases’ stigmas, and subjective and abstract themes related to fatalism, spirituality, and aspects of post-cancer survival. Political aspects such as ethnic-racial relationships are also widely cited in breast cancer, which reflects the relationship between this issue and local culture, the laws and customs of the territory, and how women’s bodies are treated.

In summary, the sources appear in five major themes: (1) Compromised body image and interactions, (2) Spirituality, (3) Loss of control over life, (4) Getting on with life, and (5) Association with ethnic-racial issues, (Chart 2). A source can appear simultaneously in more than one theme or sub-theme.

Discussion

Based on the literature, we believe that we need to raise the concept of stigma in order to understand body changes in breast cancer and how this affects women undergoing treatment. Goffman¹²12 Goffman E. Estigma: notas sobre a manipulação da identidade deteriorada. 4ª ed. Rio de Janeiro: LTC; 1988. affirms that there are three types of stigma: physical deformities, individual guilt, and tribal stigmas of race, nation, and religion. The first two types can be inferred in the discussion of the studies analyzed. In this sense, through the stigma of something, that is, a marker of worthlessness, there can be discrediting or distancing from the recognizably ordinary way women with breast cancer will be recognized and treated in this context. The mark of hair loss due to chemotherapy or the mutilation from the absence of breasts evokes the loss of femininity in the face of the expectation of the body as a reproductive, sexual, and appropriate instrument.

In the texts on body changes and how this event is a marker of breast cancer’s social representation, the debate can be broadened to aspects such as “shame at the diagnosis”, “fear”, “threat”, and “self-esteem”. These expressions involve anguish at the physical losses that will affect subjectivities. Although it is not the central theme, the female body as an instrument of control and by modern medicine, its primary surveillance device, reaffirms the extent to which the biologically healthy body should be an instrument of desire and value. Reflecting on body medicalization and fragmentation gives us access to the affections that translate fear, shame, and threat for something that is not the fault of the affected individual¹³13 Foucault M. Vigiar e punir: nascimento da prisão. Petrópolis, Rio de Janeiro: Vozes; 1987.^,1414 Martin E. A mulher no corpo: uma análise cultural da reprodução. Rio de Janeiro: Garamond; 2006.. At this point, we find studies that show precisely how the spouses of people with cancer abandon them, in a demonstration of how the fruits of representations are socially established.

Stigma as a representation indirectly keeps women away from screening and, consequently, from early diagnosis and proper treatment. It is also a fact that social exclusion prevents this choice for some women, but others who have this right or privilege delay sustained by the denial that can come from what this represents in their trajectory. It is a cycle that increases mortality, brings more stigma because treatments for advanced diseases will be more aggressive, and feeds the imagination that all cancer is devastating and a real threat to life.

When the articles address social representations related to losing control over life, we see the consequences of stigma, which was feared in the previous group. The diagnosis of breast cancer brings relentless reflections: fear of death, fear of the future, fear of rejection, and the debate about fatalism.

Another aspect observed in the review is spirituality as the guiding light for women with breast cancer. While spirituality is not this study’s central theme, using this definition vis-à-vis social representations sometimes works as an antidote: spirituality in facing and dealing with the disease and its consequences and as a coping strategy. We also noticed records of the inappropriate use of spirituality to deny the body’s reality, which is so common in our culture. Women flee to religion in search of something that science should intervene in, which does not mean that spiritual cures are beneficial, but they do not stand in the way of science and pharmacology.

As the selection of articles was not exclusive within the groups analyzed, the most significant number of studies may fit the theme of “getting on with life/survival”. Understanding the symbolic dimension of breast cancer and experiencing resilience in this same context were points where representations were included in the literature. The construction of the sequence of symbolism and resilience, followed by the acceptance of the modified body and the readaptation to work and personal life, shows the trajectory of a group of women who decide and can treat themselves.

Ethnic-racial aspects in the context of breast cancer formed a diverse category, with the possibility of new debates and the need for greater attention in other studies, which is because social representations are also associated with the concept of culture, and we also live in a historically racialized world. In anthropology, culture relates to beliefs and values produced and perpetuated by a social group. In other words, it relates to local values transmitted socially. In this context, autocratic countries, common in the Persian Gulf regions and central African countries, prevent women from accessing health services due to their body’s exposure, the need for their spouse’s consent, and because they live under religious dogma.

In the case of racial aspects, we observed what, from a closer look outside the academic context, already seemed crystallized: Black women are more excluded from health systems than white women, have more advanced diseases, and die more from cancer than white women. Racializing healthcare seems to be an urgent demand in these studies that evoke, among other specificities, the myth of racial democracy, which can undermine doctor-patient relationships and potentiate stigmas of the disease and cancer treatment.

Conclusions

Up until the first half of the 20^th century, in the field of biomedicine, several metaphors were used for cancer in general, such as the fatalistic (“death vestibule”), demonic (“malignant tumor” vs. “benign tumor”) and military (“attack of enemy cells to be fought”) views¹⁵15 Sontag S. A doença como metáfora. Rio de Janeiro: Graal; 1984.. If we look at the representations of breast cancer discussed in this study, we can consider that these metaphors associated with cancer in general still exist.

On the other hand, the representations addressed here are not just based on the metaphors mentioned above. Levels of subjectivity, societal relationships, and the sociocultural dimension of population segments can also configure different lay ways of representing cancer. Regarding evidence, the scope of this review points to issues that exceed the disease of one part of a woman’s body. Breast problems can result in a compromised female identity.

Based on the discussions of the studies reviewed, we underscore that care for women with breast cancer cannot be based solely on biomedical and epidemiological approaches since this disease is traversed by the knowledge that competes with these approaches. In this sense, in terms of training and the work of health professionals, it is necessary to debate the different symbolic layers surrounding cancer representations focused on here.

References

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