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Mieke Priesman

980330670020

Supervisor: Bettina Bock Examiner: Jessica de Koning

Chair group: Rural Sociology group (RSO) BSc Thesis Health and Society

July 2020

Wageningen University and Research

The cult ur al bar r ier s t o t he ear ly det ect ion of

br east cancer in Sub-Sahar an

Afr ica

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Abstract

Introduction. The incidence of breast cancer, in Africa, is low compared to other countries in the world. Nevertheless, Africa has the highest breast cancer mortality rate worldwide. The main reason for this is when women get detected with breast cancer, the disease is in a late stadium already. This research aims to understand the cultural barriers to the early detection of breast cancer among women in Sub-Saharan Africa (SSA), to increase the survival rate of breast cancer in this region. Theoretical framework. The help-seeking behaviour theory was used to show the process of seeking help for breast cancer of women in SSA. The process consists of different stages. The first stage is the recognition of the disease, the second stage is the decision to seek help and the third stage is the choice of care. The different stages are interrelated with each other. Per stage, it was investigated which cultural barriers influence the stage. The symbolic interactionism theory was used to view breast cancer from the point of view of women in SSA and to understand which meaning they give to breast cancer.

Methods. A systematic literature study has been conducted. Two search strings were used in the database Scopus. To find more relevant studies, the snowball technique has been applied.

This led to a total of fourteen useful studies, which met the inclusion and exclusion criteria and quality assessment. Results from those articles were extracted to answer the research question. The cultural barriers found in the articles were ordered by the different stages of the help-seeking behaviour theory. Results. The cultural barriers that influence the recognition of the disease are stigma and the (mis)conceptions about the disease. The cultural barriers that influence the decision to seek help are the male-dominated culture, social support, fear and stigma. The cultural barriers that influence the choice of care are the belief in traditional healing and the influence of others. Discussion & conclusion. Stigma is a prominent factor during the help-seeking behaviour process. Stigma withholds the whole process of seeking help and stigma is interrelated with other cultural barriers during this process. Stigma challenges educational solutions, mentioned in the extracted results and previous studies. For that reason, it would be more effective to address stigma in order to improve the help-seeking behaviour of breast cancer in SSA. Reducing stigma would improve the early detection of breast cancer in SSA and increase the survival rate. However, stigma is complex to address because other cultural barriers maintain stigma and it is not only the stigma around breast cancer, but also stigma on other fronts. Further research should be done to examine what would be the most effective way to address stigma.

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Table of contents

Abstract ______________________________________________________________________________________________ 2 1. Introduction ___________________________________________________________________________________ 4 2. Theoretical framework _______________________________________________________________________ 6 2.1. The help-seeking behaviour theory ___________________________________________________________6 2.2. The definition of culture _______________________________________________________________________7 2.3. The symbolic interactionism theory __________________________________________________________8 3. Methodology __________________________________________________________________________________ 9 4. Cultural barriers and the recognition of breast cancer __________________________________ 10 4.1. Stigma _________________________________________________________________________________________ 10 4.2. (Mis)conceptions about the disease ________________________________________________________ 11 4.2.1. (Mis)conceptions of the disease’s cause ____________________________________________________________ 11 4.2.2. Misconceptions of the symptoms ___________________________________________________________________ 12

5. Cultural barriers and the decision to seek help for breast cancer ______________________ 14 5.1. Male-dominated culture and social support _______________________________________________ 14

5.1.1. Male-dominated culture __________________________________________________________________________ 14 5.1.2. Social support _____________________________________________________________________________________ 14 5.2. Stigma and fear_______________________________________________________________________________ 15 5.2.1 Stigma and (mis)conception __________________________________________________________________________ 16 5.2.2. Fear __________________________________________________________________________________________________ 16

6. Cultural barriers and the choice of care for breast cancer ______________________________ 19 6.1. Belief in traditional healing __________________________________________________________________ 19

6.1.1. Structural reasons _________________________________________________________________________________ 19 6.1.2. Cultural reasons ___________________________________________________________________________________ 20 6.2. Influence from others ________________________________________________________________________ 21 6.2.1. People close to the patient _______________________________________________________________________ 21 6.2.2. Health providers __________________________________________________________________________________ 21

7. Discussion ____________________________________________________________________________________ 23 7.1. Interpretation of findings ____________________________________________________________________ 23 7.2. Reflection on theory _________________________________________________________________________ 24 7.3. Limitations and strengths____________________________________________________________________ 25 7.4. Suggestions for future research _____________________________________________________________ 26 8. Conclusion ___________________________________________________________________________________ 27 9. References ___________________________________________________________________________________ 29 10. Appendix: characteristics of included studies _________________________________________ 35

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1. Introduction

Breast cancer is the most diagnosed type of cancer among women in the world (WHO, 2016).

Although breast cancer is seen as a Western disease, breast cancer numbers are especially increasing in low- and middle-income countries. Reasons for the increasing numbers are ageing and changes to a more Western lifestyle; changes in unhealthier diets and less physical movement (Musau, 2017; WHO, 2016). The incidence of breast cancer in Africa is low compared to the rest of the world, but the incidence cases of breast cancer in Africa will further increase and it is expected that the incidence will be twice as high by 2050 (Vanderpuye et al., 2017). Africa has the highest age-standardized breast cancer fatality rate worldwide (Youngblood et al., 2020). Moreover, breast cancer is the second highest type of cancer that is fatal in Africa (Espina, McKenzie, dos-Santos-Silva, 2017; Joko-Fru et al., 2019).

Sub-Saharan Africa (SSA) has a higher breast cancer mortality rate than North Africa (Ssentongo et al., 2019). For that reason, this study is focussed on women in SSA.

The main reason of the high mortality rate of breast cancer in SSA is that women are too late seeking treatment when having symptoms and get diagnosed when their tumour is already in an advanced stage (Brinton et al., 2014). A study, performed in Uganda, found that poor help-seeking behaviour is the main reason for the late detection of breast cancer (Ilaboya, Gibson, & Musoke, 2018). Early detection of breast cancer can increase the survival rate for one-third of the patients (Brinton et al., 2014).

Women in SSA face different structural and cultural barriers that influence the help- seeking behaviour of breast cancer. Structural barriers include poor financial and physical access to cancer care, poor availability of cancer care and lack of education (Anaman-Torgbor, King, & Correa-Velez, 2017). For instance, mammography screening can detect a tumour before a woman has symptoms of breast cancer, but because of the high costs and technical complexity, this method is barely available in SSA (Black & Richmond, 2019; WHO, 2016).

Besides, in most countries in SSA, there is poor infrastructure and only one, if any, medical cancer centre. This makes it complicated to seek treatment (Kingham et al., 2013). Moreover, the lack of education about the disease is a barrier to the early detection of breast cancer in SSA (Ilaboya, Gibson, & Musoke, 2018).

Limited knowledge is found about the cultural barriers to early detection of breast cancer in SSA. Research is done about the cultural barriers to early detection, but for other diseases or around cancer in general. For example, a study of Nakanjako et al. (2013) about the socio-cultural barriers to HIV/AIDS prevention, care and treatment among women in SSA.

This study found that women are more vulnerable to HIV/AIDS infection than men because gender inequalities enable men to have control over women. This hinders women to make their own decision in their health behaviour. Besides, the pressure on women that they adapt to the prospects of society restricts women in effective prevention, care and treatment (Nakanjako et al., 2013).

Additionally, some research is done about barriers to breast and cervical cancer screening. The focus is not only on cultural barriers, but they do include cultural barriers as well. For example, a study from Dodo, Sykes and Powell (2016) among Nigerian women, includes personal, socioeconomic and sociocultural factors that influence the healthcare- seeking behaviour to breast and cervical cancer. Some socio-cultural factors that hinder the healthcare-seeking behaviour, mentioned in the study, are; lack of social support from their husband and family, the belief that getting cancer is God’s will, the belief that only prayers

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5 can cure cancer and the common habit that you just go to the doctor when you notice symptoms. Moreover, a study among Ugandan women about the barriers to the early detection of breast cancer found that the most common barriers were poor knowledge, economic barriers to the access of breast cancer care, fear and a lack of social support (Sharp et al., 2019). The latter two barriers are considered as cultural barriers.

At last, research has also been done concerning the cultural factors that influence breast and cervical cancer screening. However, this was done among Korean American women and not among women from SSA. This study (Lee, 2015) found that fatalism was the most mentioned barrier to engaging breast and cervical cancer screening.

There is knowledge about cultural barriers to early detection, but that mostly covers other diseases and not specifically breast cancer or women in SSA. Moreover, only some research is done about barriers to the early detection of breast cancer in countries of SSA.

However, these studies do not explicitly cover cultural barriers. One can learn from the information that the above-mentioned studies provide. Nevertheless, more research is needed to investigate whether the same applies to women with breast cancer in SSA.

This research aims to understand the cultural barriers to the early detection of breast cancer among women in SSA, to increase the survival rate of breast cancer in this region. This will be investigated by answering the following research question:

“Which cultural barriers influence the different stages in the help-seeking behaviour of breast cancer among women in Sub-Saharan Africa?”

This research question will be answered with the following sub-questions:

- Which cultural barriers influence the first stage of the help-seeking behaviour: the recognition of the disease?

- Which cultural barriers influence the second stage of the help-seeking behaviour: the decision to seek help?

- Which cultural barriers influence the third stage of the help-seeking behaviour: the choice of care?

The research question will be answered based on a systematic literature review. This systematic literature review is supported by the help-seeking behaviour theory and the symbolic interactionism theory, which will be discussed in the next chapter: the theoretical framework. The third chapter describes the methods that were used to conduct this research.

Chapter four, five and six present the results of the research. The results are divided over the sub-questions, the different stages of the help-seeking behaviour. Lastly, chapter seven and eight consists of the discussion and conclusion, which gives an overall answer to the research question and suggestions for future research.

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2. Theoretical framework

The help-seeking behaviour theory was used to look at the cultural barriers that emerge per stage of the help-seeking behaviour process. ‘Cultural barriers’ is a comprehensive concept that will be clarified. The cultural barriers will be looked at from the symbolic interactionist point of view. The symbolic interactionism theory will be explained at the end of this chapter.

2.1. The help-seeking behaviour theory

The help-seeking behaviour theory is a model that shows the pathway of an individual to seek help. That process of seeking help consists of several stages. Various schematic models for help-seeking behaviour exists and different models use different stages. The schematic model that was used, in this research, is mainly based on the schematic model of Liang et al. (2005).

Choice of help-seeking behaviour model

Other models, compared to that of Liang et al. (2005), were considered less suitable to use for the help-seeking behaviour for breast cancer in SSA. The help-seeking behaviour model of Momeni and Rafii (2019), for example, was considered as too comprehensive because it consists of five different stages. Moreover, it has several side branches, such as the influence of attributes and factors, and it shows different possible outcomes for early and delayed help- seeking. The model of Eiraldi et al. (2006), on the other hand, was perceived as too simple, because it only shows the stages and does not show factors that influence the stages or the interrelation of the different stages.

The model of Liang et al. (2005) was considered as the most accurate model to use for this study because this model uses a suitable amount of stages for the help-seeking behaviour for breast cancer. Besides, it shows that help-seeking behaviour is extensive because the stages are interrelated with each other and the stages are influenced by different factors.

Liang et al. (2005) use the model to explore the help-seeking behaviour among intimate partner violence victims. They use three different stages that are influenced by individual, interpersonal and sociocultural factors. In the help-seeking behaviour model, applied to breast cancer in SSA, only cultural influences were considered. For this research, the concept ‘cultural barriers’ was used that influence the different stages.

Explanation stages

The stages were based on the conditions of the help-seeking behaviour model of Cornally and McCarthy (2011) because they were perceived to give the most distinct explanation of the different conditions. They mention that the following conditions are needed to be present for a help-seeking behaviour to take place: the problem recognition and definition, the decision to act and selecting a source of help (Cornally & McCarthy, 2011). Selecting a source of help is preceded by the decision to seek help and problem recognition and definition (Cornally &

McCarthy, 2011).

The different stages of the process used for the help-seeking behaviour of breast cancer in SSA are the recognition of the disease, the decision to seek help and the choice of care. The recognition of the disease makes the person aware of the need to seek help (Cornally & McCarthy, 2011). The decision to seek help is dependent on the perceived personal costs and benefits, of an individual, to seek help. This stage shows someone’s willingness to seek help (Cornally & McCarthy, 2011). The choice of care describes which

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7 treatment a person believes to be effective (Helman 1984). All three stages are influenced by cultural barriers (Figure 1).

Interrelation stages

The different stages are interrelated with each other. In Figure 1, a schematic approach of how the different stages are related to one another can be seen. The double-headed arrows between the different stages display the interrelation and the comprehensive process of help- seeking behaviour (Liang et al., 2005). Help-seeking behaviour is a continuous interaction of stages. The interaction means that the cultural barriers of a certain stage influence the cultural barriers of another stage. An arrow to a previous stage means that the cultural barriers of that stage influence the cultural barriers of the previous stage and the other way around.

Figure 1. The help-seeking behaviour model for breast cancer.

2.2. The definition of culture

The different stages of the help-seeking behaviour model are influenced by cultural barriers.

‘Cultural barriers’ is a comprehensive concept that needs further clarification.

Culture and illness

To understand how people respond to an illness, it is important to understand the culture they inherited or acquired (Helman, 1984). Culture shapes the feeling of being ill, the behaviour towards disease and help-seeking behaviour (Kortman, 1995). Culture influences how people perceive health and illness, which diseases are stigmatized, how illness is expressed and which treatment they believe to be effective (Canadian Paediatric Society, 2020).

Broad definition

Culture is a comprehensive concept and it is difficult to draw the line between cultural and structural barriers. Cultural and structural barriers are interrelated, because culture generates in a structure, but also shapes the structure (UK Essays, 2019). For example, lack of knowledge exists partly because of lack of access to educational programmes about breast cancer and partly because of stigma about the disease. Moreover, the belief in traditional

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8 treatment is culturally dependent, but also structurally dependent because there is a great amount of availability of traditional healers compared to medical doctors.

For that reason, a broad definition of culture was used for this research. The concept culture, in this study, is explained in terms of health behaviour and can be defined as the shared beliefs, values and practices of a group of people that are directly affiliated to a health- related behaviour (Egede, 2006). Cultural barriers are the obstacles that are created by values, attitudes, beliefs, practices, norms and social roles (Li, 2017). Cultural barriers create misunderstanding about the disease and lead to ineffective health outcomes (Li, 2017). In the case of breast cancer in SSA, cultural barriers result in a late-stage detection of breast cancer (Lannin, 1998).

2.3. The symbolic interactionism theory

The symbolic interactionism theory is a theory that was used as a tool to look at cultural barriers. The Symbolic interactionism is a sociological theory developed in the early twentieth century and emerged as a prominent theory in the mid-twentieth century (UK Essays, 2018).

The theory is coined by Herbert Blumer and is based on the studies of George Herbert Mead, a professor at the University of Chicago (Sociology Group, 2019).

Explanation theory

The symbolic interactionism theory zooms in on the viewpoint of the other. With this theory, breast cancer can be viewed from the point of view of the patient and this theory can be used to understand which meaning women from SSA give to breast cancer (Bezerra et al., 2018).

The meaning a person gives to something is derived from the social interaction a person has with others (Bezerra et al., 2018). Society is constructed through the interactions between people and through social interaction a culture is shared and created (Carvallo &

Pelham, 2006). During the process of social interaction, people create and modify those meanings they have (Bezerra et al., 2018).

Relation theory and culture

The symbolic interactionism point of view is closely related to culture because the culture is seen as the ‘lens’ through which people are perceiving and understanding their world and is considered as a system of giving meaning (Helman, 1984; Kortman, 1995). Besides, reacting properly to cultural barriers means trying to comprehend a group’s belief (Li, 2017). Cultural factors affect the meaning women give to breast cancer and this shapes the behaviour towards the disease (Kagawa-Singer, 2000). The behaviour towards the disease is, in this case, women from SSA waiting to seek help.

Cultural differences affect the different meanings people give to breast cancer, so various cultures act differently to the disease (Kagawa-Singer, 2000). Diverse societies have different visions of reality that are seen as true, but there is no objective truth. Every vision of reality is an interpretation of reality, a subjective reality (Berger & Luckmann, 1900). People in SSA look at breast cancer differently compared to people living in the Western world, for example.

According to symbolic interactionists, health and disease are intersubjective constructs. The intersubjective reality is based on a shared culture. This means that people within a culture share a common subjective reality (Berger & Luckmann, 1900). A subjective reality, in terms of health, means that a health condition is considered healthy or ill only if it is defined like that by society (Barkan, 2014).

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3. Methodology

A systematic literature study was done to examine the cultural barriers to breast cancer detection in SSA. The online database, Scopus, was used to conduct the study. The following search strings were used in Scopus: TITLE-ABS-KEY (“breast cancer” AND Africa AND barrier OR obstacle OR difficult* AND “early detection” OR screening OR prevent*) and TITLE-ABS- KEY (“breast cancer” AND Africa AND cultur*). The first search string led to 44 results and the second search string led to 81 results.

The documents were filtered using included and excluded criteria. Before reading the title and abstract, articles published before 2000 and articles not written in English were already excluded. By reading the abstract and title more studies could be excluded;

documents about women living outside SSA and documents about other diseases than cancer. Only one article about women from SSA living in the United States was used, because it was clearly about people born in SSA and the information found in the research was regarded as useful. Besides, documents about structural barriers, in which no cultural barriers were mentioned, were excluded. Moreover, articles discussing only the epidemiology of breast cancer or just the prevention and not the cultural barriers were also excluded.

Articles that have been included are documents considering all regions in SSA and documents about breast cancer as well as cervical cancer. This decision has been made since cervical and breast cancer is comparable. Both cancers occur mostly among women and the mortality rate of both cancer types is high because women in SSA start looking for help when the diseases have significantly developed already (Brinton et al., 2014). Besides, articles often combine breast cancer and cervical cancer. Documents about other forms of cancer or cancer, in general, were only included when ‘breast cancer’ was mentioned in the abstract. Eighteen articles met the inclusion and exclusion criteria after reading the title and abstract.

After skimming the text of those articles, twelve articles were considered to be useful.

On top of that, the snowball technique has been applied; through references to those articles, different articles were found that were also considered to be useful to conduct the study. In total this resulted in nineteen documents.

The quality of the nineteen documents has been assessed by looking whether the articles provided the following information: the publication year, location, aim of the study, study design and sample use. Based on the quality assessment, eventually, fourteen articles were considered of sufficient quality for this systematic literature review. An overview of the characteristics of the included articles is shown in Table 1, which is attached as appendix.

With the remaining fourteen documents, the systematic literature study was conducted. The fourteen articles have been read critically and per article information about the cultural barriers of different stages of the help-seeking behaviour were extracted. The cultural barriers found in the results of the articles were ordered by different stages. Based on these results, the research question was answered. The other five documents were sometimes used to support the articles used for the systematic literature review.

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4. Cultural barriers and the recognition of breast cancer

This chapter includes the cultural barriers that cause delay during the first stage of help- seeking behaviour. The first stage covers the recognition of the disease when the first signals of symptoms are noticed and interpreted (Kohler et al., 2017). Recognizing the disease makes people conscious of the need to seek help (Cornally & McCarthy, 2011).

Within this stage, women move from noticing and acknowledging particular sensations towards interpreting the sensations as potential disease symptoms. Based on this process, the cultural barriers could be classified into two categories, including stigma and the (mis)conception about the disease. Stigma is a barrier that results in that women do not even allow it to notice and interpret the symptoms of the disease. Moreover, the stigma around breast cancer results in silence about the disease. This has an impact on the (mis)conception about the disease, in which women interpret the symptoms as disease symptoms.

4.1. Stigma

Different studies found various approaches to the stigma that influences the recognition of the disease. Stigma is a negative attitude or a bad reputation towards something created by society, which make people disgrace it. Stigma is related to shame. If there is a stigma around something, people think it as something to be ashamed of (Cambridge Dictionary, 2020). The stigma, in the studies, concerns expressing pain and touching yourself. Moreover, it is about the stigma that leads to silence about the disease, which indirectly influences the recognition of the disease.

In most Sub Saharan African countries, it is a taboo to openly express pain or suffer (Tetteh

& Faulkner, 2016). Especially for men, it is seen as being weak, but women, as well, are expected to stay stoic and resilient (Tetteh & Faulkner, 2016). Because of the heavy workload of women in SSA, women do not want to disrupt the household, with a result that they endure their disease (Tetteh & Faulkner, 2016). That is why the threshold of the disease is high for women in SSA and women do not readily admit the pain (Tetteh & Faulkner, 2016).

Besides, Sheppard, Christopher and Nwabukwu (2010) found that it is a taboo to touch yourself. Religion was mentioned as an underlying cause. Especially in the Muslim religion, touching yourself is thought to be a sexual act and not seen as appropriate to do, even in private situations. Because of this, women in SSA did not feel comfortable performing breast self-examination.

Additionally, stigma indirectly influences the recognition of the disease. Because breast cancer is a taboo, women do not talk about the disease. The taboo leads to silence about the disease and, as a consequence, less knowledge and experiences are shared about the disease (Sheppard, Christopher, & Nwabukwu, 2010).

The taboos around touching yourself and expressing pain already withhold women from recognizing the symptoms. Additionally, the lack of knowledge, related to the stigma, influences the (mis)conception about the symptoms of breast cancer and about the cause of breast cancer (Bonsu & Ncama, 2019), which will be discussed in the next subchapter.

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Different (mis)conceptions about breast cancer, that influence the recognition of the disease, emerge in the studies. A conception is an idea or understanding about something and a misconception is a wrong idea or understanding about something (Cambridge Dictionary, 2020a). (Mis)conceptions about the disease are obstacles for recognizing the disease or interpreting the symptoms as cancer. Those (mis)conceptions are caused by reliance on traditional knowledge and are women’s persuasion about their disease, that sometimes does not even make them think they could get ill. Based on the studies, those (mis)conceptions are divided into (mis)conceptions of the disease’s cause and (mis)conceptions of the symptoms of the disease.

4.2.1. (Mis)conceptions of the disease’s cause

In the studies, four different (mis)conceptions about the cause often emerge. Those (mis)conceptions are that the disease is a punishment from God or others, that the radiation of the phone or money causes breast cancer, that breast cancer is a white woman’s disease and that someone could only get breast cancer when it is occurring in the family. The latter two (mis)conceptions, make women feel protective by their ethnicity or because they do not have family members with the disease.

Punishment from God or others

Many studies found that women in SSA see breast cancer as a sin or punishment and as a disease they cannot control. African cultures emphasize interconnectivity to other people, the ancestors and the earth (Maree & Wright, 2010). Good health is considered as a good harmony between supernatural or ancestral powers and social relationships, and diseases are seen as a disruption or conflict with it (Olopade, Falkson, & Williams, 2010; Tetteh & Faulkner, 2016). This influences how a disease is experienced (Tetteh & Faulkner, 2016).

Bonsu and Ncama (2019) conducted a qualitative study and interviewed eleven Ghanaian women. They found that breast cancer is ascribed to immoral choices in life. It is seen as a result of the punishment of God, evil spirits and spiritual incursions (Bonsu, 2019).

Most of the interviewed Ghanaian women ascribed breast cancer to supernatural powers and believed that breast cancer is an assault of a family member through supernatural forces with the intention to damage her (Bonsu & Ncama, 2019). This is in line with findings of Opoku, Benwell and Yarney (2012), who also conducted a qualitative study among Ghanaian women, in which respondents attributed spiritual powers to the disease. In their eyes, everything that happens has a cause. Because nobody knows the cause of breast cancer, it would not be out of place to ascribe breast cancer to supernatural powers (Opoku, Benwell, & Yarney, 2012).

This can be supported with a quantitative survey study among 225 Tanzanian women, in which 70.2% agreed with the statement that breast cancer is the will of God and 33.3%

believed that breast cancer was a consequence of an enemy attack (Morse et al., 2014).

A study of Rayne et al. (2017), among South African breast cancer patients, explored that all different religions (Christian, Muslim, Hindu and other) equally believed breast cancer was a punishment or a curse from their God.

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12 Radiation of the phone or money

Moreover, different studies found that women incorrectly mention putting money in the bra as a risk factor for breast cancer. Opoku, Benwell and Yarney (2012) examined that 20%

believed that putting coins in the bra would increase the risk of getting breast cancer. The quantitative survey study among 225 Tanzanian, showed more striking results; 82.2% of women believed that putting money under brassiere could cause breast cancer (Morse et al., 2014). A qualitative study of Grosse Frie et al. (2018) confirms this, it indicates that women have been told that putting a phone or money in the bra could induce breast cancer.

White-woman’s disease

Several studies point out that women in SSA do not even expect to get ill, because they consider themselves as not belonging to the risk group. With, as a consequence, poor recognition of the symptoms, because of not paying attention to it. Diverse studies found, for example, that women believe that cancer is a white woman’s disease and thus that they are not vulnerable to getting breast cancer themselves. In a quantitative study among Nigerian women, 55.3% interpreted breast cancer as a disease that occurs only among Caucasians (Amosu et al., 2011). This is in line with a qualitative study of Sheppard, Christopher and Nwabukwu (2010), among women born in SSA. They mention that women never thought they would be prone to breast cancer because they saw it as a white person’s disease.

Family history

Also, the belief that women are only at risk when breast cancer is occurring in the family, results in that women do not expect to get ill. Bonsu and Ncama (2019) found that there is a strong belief that if cancer is not occurring in family history, that someone is not at risk for developing breast cancer. Even though Ghanaian women had a positive family history, they did not feel being at risk, because they mentioned they did not have a personal connection with those family members (Bonsu & Ncama, 2019). Or because they still see the disease as a spiritual attack (Bonsu & Ncama, 2019). Opoku, Benwell and Yarney (2012) also found that women consider themselves as not belonging to the risk group because breast cancer is not occurring in the family. 5.1% gave the absence of a family history of breast cancer as a reason for not participating in mammography screening.

4.2.2. Misconceptions of the symptoms

Many studies mention that women in SSA were not able to ascribe their symptoms to breast cancer. Those (mis)conceptions about the symptoms were because of lack of knowledge about the symptoms (Kohler et al., 2017). Only 1.51% of 1194 Nigerian women were able to correctly associate the major possible symptoms of the disease with breast cancer (Amosu et al., 2011). This is in line with a survey study, among a low-income neighbourhood in South Africa, that indicates that more than 80% was unaware of the symptoms of the disease (Brinton et al., 2014). Likewise, Grosse Frie et al. (2018) found that Malians barely associated the discovered symptoms with breast cancer. Many women confused breast cancer with other breast diseases because the symptoms experienced sounded abnormal for breast cancer or might relate to very advanced stages of cancer (Grosse Frie et al., 2018).

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13 Different (mis)conceptions

Different types of (mis)conceptions about the symptoms were described in the studies.

Kohler et al. (2017) found that Malawian women ascribed their symptoms to their pregnancy.

Some other women ascribed their symptoms as swollen breasts because of milk that is clogged in there or the lump was seen as a boil, which could be removed. Just at the moment that she tried to remove it, she realized it was hard and that it was not a boil (Kohler et al., 2017). Also, in the study of Sheppard, Christopher and Nwabukwu (2010) the lump was seen as a boil by many women in SSA, which was associated as a result of stress or a punch.

Association breast cancer and pain

Many qualitative studies found that women in SSA strongly associate breast cancer with pain and that if there is no pain experience that there is no disease in their opinion. In a qualitative study among Ghanaian women, they examined that most women perceived a breast lump not as a disease and not severe if it was not painful (Bonsu & Ncama, 2019). Only when women were experiencing pain, the women perceived the breast lump as something serious and were stimulated to do something with it (Bonsu & Ncama, 2019). A qualitative study among breast cancer patients in Mali, showed that even when women were aware of the symptoms, they were confused if the symptom was a disease or not, because it was not hurting (Kohler et al., 2017). That made it complicated to recognize that the symptom was a sign of breast cancer. The pain was often mentioned as a sign to seek help (Kohler et al., 2017). This can be confirmed with a qualitative study, that showed that Ugandan breast cancer survivors gave a painless breast as a reason for their delay going to the doctor (Meacham et al., 2016).

Nevertheless, quantitative studies show other results. For example, the study of Sharp et al. (2019) shows that 86.4% of 337 Ugandan women disagreed with the statement: “I do not need a breast exam because I feel fine”. Besides, the study of Morse et al. (2014) indicates that 70.2% correctly identified a painless breast lump as an early symptom of breast cancer.

Conclusion

Recognizing the disease is about noticing and interpreting the symptoms of breast cancer.

Stigma and (mis)conceptions about the disease influence the recognition of the disease.

There is a stigma around expressing pain and touching your breasts, which hinders the recognition of the disease in the first place because it withholds women to even allow themselves to notice the symptoms. Besides, the stigma around breast cancer influences the conception of the disease. The stigma around the disease results in silence about the disease, which influences the (mis)conceptions of breast cancer.

Those (mis)conceptions are (mis)conceptions about what causes breast cancer and (mis)conceptions about the symptoms of breast cancer. Many of the (mis)conceptions given in the studies are conceptions that breast cancer is beyond their control. Those (mis)conceptions negatively influence the recognition of the disease.

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5. Cultural barriers and the decision to seek help for breast cancer

The fifth chapter covers the cultural barriers that cause delay during the second stage of help- seeking behaviour. The second stage is the decision to seek help, which concerns the observed costs and benefits to seek help. Based on the cultural barriers mentioned in the included studies the barriers could be classified into four categories, namely male-dominated culture, social support, fear and stigma. Because many of the barriers are interrelated, some barriers are taken together; male-dominated culture is taken together with social support and stigma with fear. Those relations are described in the subchapters.

5.1. Male-dominated culture and social support

A considerable group of women depend on their family, friends and husband in their decision to seek help. Maree and Wright (2010) found that 20.7% of 565 South African women needed permission from their parents or spouse to seek care (Maree & Wright, 2010). The male- dominated culture influences women’s dependency on their spouse. Besides, the male- dominated culture causes female diseases to be undervalued. The undervalue of the disease, that is associated with the male-dominated culture, could impact social support. However, most studies found that women feel supported by their husband in their decision to seek help.

5.1.1. Male-dominated culture

In African culture, men dominate women and males have a higher priority in society than women (Maree & Wright, 2010; Opoku, Benwell, & Yarney, 2011). Studies mention the male- dominated culture as a barrier to the decision to seek help, in different ways. Maree and Wright (2010) found that patriarchy makes women financially and socially dependent on their partner. It influences the right of women to decide about their own body and women do not consider their health as important and do not prioritize it (Maree & Wright, 2010). This is supported by findings of Tetteh (2016), who found that women’s status is associated with her health status. Women’s status impacts access to health care because women need confirmation of their partner to seek care (Tetteh, 2016).

Additionally, Opoku, Benwell and Yarney (2010) indicate that the male-dominated culture results in that female related diseases, like breast cancer, are undervalued. Breast cancer is underfunded and the importance of treatment and screening of the disease is not recognized (Opoku, Benwell, & Yarney, 2011).

5.1.2. Social support

The undervalue of breast cancer, that is related to the male-dominated culture, could influence the social support women can generate. For that reason, it is important that men are involved in educational programmes about breast cancer to support their wives in going to the doctor after recognizing breast cancer symptoms (Opoku, Benwell, & Yarney, 2011).

Two studies, from Sharp et al. (2019) and Ekortarl, Ndom and Sacks (2007), found that poor social support was a barrier to the decision to seek help. Sharp et al. (2019) indicate that 24% gave poor social support as a reason to not seek care. Besides, Ekortarl, Ndom and Sacks (2007) point out that women were dropped out of the hospital by their family because of financial reasons. Nevertheless, those studies do not indicate that the undervalue of the

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15 disease impacts the social support from husbands and the studies are not particularly about support from their husbands.

There are, however, studies that point out that women were supported by their social environment. Meacham et al. (2016) indicate that social support, especially from husbands, family and breast cancer survivors, can be a helping hand in the decision to seek care. This study shows that many Ugandan women had supportive spouses that triggered them to see a doctor. Almost all participants immediately informed their family or husband after recognizing the symptoms. For many women, this resulted in support for seeking help (Meacham et al., 2016). This is in line with findings of Bonsu and Ncama (2019), who found that exposure of their disease to family, husbands and pastors encouraged women in seeking care. They have been told by them to see a doctor and even got financial support. Those findings are supported by a quantitative study that found that 61.3% of 565 Ugandan women had the feeling that their spouses or family encouraged them to seek treatment (Maree &

Wright, 2010).

Sheppard, Christopher and Nwabukwu (2010), however, found that because of the stigma around breast cancer, women would not share their disease with people outside of their close family and thus received no social support from people outside of their family. The stigma about the disease, that influences the decision to seek help, is further explored in the next subchapter.

5.2. Stigma and fear

The feelings of fear towards breast cancer are related to feelings of shame and stigma. It is about the fear that the disease is incurable and the fear to lose their husband after mastectomy. This influences the decision to seek help. In the previous stage of the help- seeking behaviour, stigma leads to (mis)conceptions about the disease, which influences the recognition of the disease. In this stage, stigma also influences anxiety about the disease; the treatment and the ability to be cured. At the end of this subchapter, it is shown that fear about breast cancer is not only influenced by stigma, but that fear about the disease also influences stigma (Figure 2).

Figure 2. Relation between stigma and fear.

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16 5.2.1 Stigma and (mis)conception

Because breast cancer is often detected in a late stadium in SSA, the treatment is often surgery and it is more likely that people will die after treatment. This results in (mis)conceptions that the disease is incurable and that women always have to have a mastectomy when treating breast cancer. Those (mis)conceptions are, as in the previous chapter, related to stigma.

In Uganda, 75% of the time the treatment is surgery because breast cancer is detected in a late phase. 93% of those surgeries were mastectomies and 7% lumpectomy (Kingham et al., 2013). However, mastectomy could be prevented by detecting the disease on time (Sharp et al., 2019). Besides, when women are treated in an advanced stage of breast cancer, chances of survival are lower (Sharp et al., 2019). This corresponds to findings of Opoku, Benwell and Yarney (2011), who mention that Ghanaian women associate surgical intervention with dying. A reason for this is that many women undergo a surgical treatment when their cancer is already in an advanced stage and when the chance to die is high (Opoku, Benwell, & Yarney, 2011). This results in (mis)conception about the consequences of the disease: that breast cancer can only be treated with mastectomy and that breast cancer is incurable. Amosu et al. (2011) found that 33.9% of 1194 Nigerian women believed that the disease is incurable.

(Mis)conceptions about the disease are, as in the previous stage, related to stigma. As mentioned in the previous chapter, Sheppard, Christopher and Nwabukwu (2010) found that stigma and shame contribute to the belief that breast cancer should be kept silent. The disease should be kept private and should not be shared with people outside their close family (Sheppard, Christopher, & Nwabukwu, 2010). Women even visited the hospital with a false name (Sheppard, Christopher, & Nwabukwu 2010).

However, Clegg-Lamptey, Dakubo and Attobra (2009) and Meacham et al. (2016) both show that sharing the breast cancer experiences of breast cancer patients could prevent those (mis)conceptions about the disease and thus reduce the fear. Meacham et al. (2016) found that the fear was there because they did not know anyone who recovered from it.

Knowing that cancer was curable and survivable reduced the anxiety and helped women to overcome stigma about the disease and encouraged them to seek care (Meacham et al., 2016). This is in line with findings of Clegg-Lamptey, Dakubo and Attobra (2009). They indicate that fear could be taken away to expose the patients to breast cancer patients who survived after mastectomy.

The share of positive experiences of breast cancer from others would reduce the (mis)conceptions and thus the fear, while at the same time fear of the disease is associated with shame about the disease, which hinders sharing of experiences. Like this, stigma and fear perpetuate each other (Figure 2).

5.2.2. Fear

Many studies give fear as a barrier to the decision to seek help. The fear of breast cancer, mentioned in the studies, is fear of mastectomy and fear of dying. The fear of mastectomy, because they are afraid their husband will leave them after mastectomy. Moreover, fear of mastectomy also exists because they are afraid they will die because of it. Besides, fear of death leads to the idea that it does not make sense to seek help. The fear of dying and fear of mastectomy both lead to denial of the disease (Figure 3).

Sharp et al. (2019) indicate that 37% of 401 Ugandan women gave fear as a reason to not seek care. Clegg-Lamptey, Dakubo and Attobra (2009) found that 34.8% of 66 breast

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17 cancer patients in Ghana gave fear of mastectomy as the main reason for the late detection of breast cancer and 25.8% gave fear of death as the main reason for the late detection (Clegg- Lamptey, Dakubo, & Attobra, 2009). Besides, 28.8% of 66 Ghanaian breast cancer patients gave ignorance of the disease as the main reason for the late report of breast cancer (Clegg- Lamptey, Dakubo and Attobra, 2009). Those quantitative findings are supported by other studies, discussed in the paragraphs below.

Fear and denial

Bonsu and Ncama (2019) and Opoku, Benwell and Yarney (2011) both give fear as a reason for the denial of the disease, both with different fears as the reason. The perception that cancer is a deadly disease and that it cannot be cured resulted in denying the disease (Bonsu

& Ncama, 2019). Ghanaian women avoid going to the doctor, so they cannot be told they have breast cancer and be confirmed they will die. The ignorance of the disease is as a coping mechanism for them (Bonsu, 2019). Also, in a study of Opoku, Benwell and Yarney (2011), ignorance was mentioned as a consequence of fear, but in a different way than was mentioned in the study of Bonsu and Ncama (2019). Opoku, Benwell and Yarney (2011) indicate that fear of not be accepted by their husband after mastectomy led to the denial of breast cancer and made women avoid going to the doctor.

Breasts are not only seen as a sensual organ or as a beautiful part of a woman’s body, but breasts are also associated as part of their identity. Losing a breast is losing a part of their identity as a wife and as a mother (Ilaboya, Gibson, & Musoke, 2018). This also applies partly to Western countries. However, in SSA it is common for men to have several wives and men leave their wife when she is not good enough in their opinion (Chic African Culture, 2019). For that reason, women in SSA, in particular, attach great importance to their breasts in order to be a good wife for their husband. Removing the breasts would impact their marriage and they preferred to die instead of living without their breasts (Opoku, Benwell, & Yarney, 2011).

Meacham et al. (2016) found that it is usual that men leave their sick wives. It is seen as a waste of time to stay with their sick wife; they cannot do childbearing and household tasks anymore and are thus perceived as unhelpful. This is supported by findings of Clegg- Lamptey, Dakubo and Attobra (2009), they indicate that married women were significantly more likely to cease before and during treatment.

Besides the indication that married women were more likely to quit treatment, this study also combines fear of mastectomy with fear of dying. Namely, Clegg-Lamptey, Dakubo and Attobra (2009) indicate that fear of mastectomy was because of the (mis)conception that women would die from a mastectomy. This is in line with findings of Opoku, Benwell and Yarney (2011), they mention that women fear to die after surgical treatment (as explained in

‘stigma and (mis)conception’).

In a study by Kohler et al. (2017), ignorance of breast cancer was also mentioned as a coping mechanism to symptoms. However, when symptoms got worse, women became more scared and their risk perception increased. This led to a visit to a doctor sooner (Kohler et al., 2017). A certain amount of severity faced with the disease led to less denial and quicker help- seeking.

Fear and uselessness to seek help

Different studies found that women in SSA thought it did not make sense to seek help. The fear that breast cancer is incurable, in combination with the belief that breast cancer is inevitable (see ‘(mis)conceptions about the disease’ in the previous chapter), makes going to

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18 the doctor senseless in women’s eyes. Ekortarl, Ndom and Sacks (2007) indicate that the fear to die and the belief that the disease is unavoidable results in people not seeing the benefit of seeking treatment. This is supported by a study of Sheppard, Christopher and Nwabukwu (2010), they show that the belief in that the disease is inevitable, makes women believe that nothing can be done about breast cancer.

Figure 3: Zoomed in on the influence of fear.

Influence fear on stigma

Fear also influences the stigma (Figure 2). Sheppard, Christopher and Nwabukwu (2010) found that fear has an impact on shame towards the family. The fear that the disease is a curse and a fatal disease, results in that women in SSA are ashamed to have the disease and that it is perceived as shameful towards the family (Sheppard, Christopher, & Nwabukwu, 2010). Besides, the fear to bring the disease into the family is related to stigma (as mentioned in the previous chapter, breast cancer is strongly associated with a family history) (Meacham et al., 2016).

Conclusion

The decision to seek help is about the observed costs and benefits to seek help. The decision to seek help is influenced by the male-dominated culture, social support, stigma and fear. The male-dominated culture makes the decision to seek help dependent on their husband and causes women’s diseases, like breast cancer, to be undervalued. Besides spouses, women also depend on their family and friends in their decision to seek help. People close to a woman are a supportive factor in this decision.

Moreover, stigma is related to fear. Stigma around breast cancer influences (mis)conceptions about the consequences of the disease: the (mis)conception that mastectomy is unavoidable when treating breast cancer and that the disease is incurable. In combination with the (mis)conception that the disease is inevitable, those (mis)conceptions result in fear towards the disease. The fear to lose their husband after mastectomy and the fear to die. For that reason, women avoid the disease and see it as useless to seek care. This contributes to the decision to not seek treatment.

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6. Cultural barriers and the choice of care for breast cancer

The cultural barriers that influence the third stage of help-seeking behaviour will be discussed in this chapter. The third stage is the choice of care, which is about which treatment women believe to be working. Based on the cultural barriers mentioned in the included studies the barriers could be classified into belief in traditional healing and influence from others.

Different reasons are given for the belief in traditional healing. Those reasons are partly cultural and partly structural constructed. Traditional treatment is not effective in treating breast cancer. However, even when women sought medical care, this was not always efficacious because of malpractice by medical doctors. Other people, people close to the patient and health providers, have an influence on which treatment women choose.

6.1. Belief in traditional healing

Many women in SSA believe in traditional healing instead of medical healing. Seeking traditional treatment causes women to stop treatment earlier and to detect breast cancer later. In the studies was found that the belief in traditional healing is a barrier that has both a structural and cultural background.

Clegg-Lamptey, Dakubo and Attobra (2009) show the reasons from 66 Ghanaian women for the late report of breast cancer; 19.7% because they sought herbal treatment, 19.7% because they sought prayers and prayer camps, 9.1% because they sought other spiritual care, 9.1% because of use of food supplements, 1.5% because of homoeopathy and 1.5% because of Chinese Acupuncture. The same reasons as for the late report were found for the reasons for quitting breast cancer treatment (Clegg-Lamptey, Dakubo, & Attobra, 2009). Obrist et al. (2014) found that breast cancer patients who sought traditional treatment were more likely to get detected late with breast cancer and more likely to not complete their treatment.

6.1.1. Structural reasons

Structural explanations for the choice of traditional treatment are about the availability of traditional treatments, the costs and the procedure of medical treatment.

Traditional healers are more available than medical specialists in SSA. Per 500 people, there is one traditional healer, compared to 1 medical practitioner per 40.000 people (Nortjé

& Albertyn, 2015). 80% of people in SSA make use of traditional remedy when seeking care for an illness (Nortjé & Albertyn, 2015). This is supported by Grosse Frie et al. (2018), they found that for Malian women it is easier to choose traditional treatment because there are limited specialized cancer health care services in Mali.

The good availability of traditional healers was found in a study of Bonsu and Ncama (2019). They found that the wide range of choice to private health facilities and complementary and alternative treatments is a reason that many Ghanaian women make use of alternative treatments, instead of medical treatment. Ghana has a pluralistic health care system with pluralistic consultations. Alternative treatments are spiritual care, private health facilities, praying camps and treatments by religious leaders and herbalists (Bonsu & Ncama, 2019). Spiritual leaders and traditional herbalists are meaningful for Ghanaian women for the diagnosis of breast cancer (Bonsu & Ncama, 2019). Those alternative treatments are used in all stages of breast cancer, also in the pre-diagnosis stage (Bonsu & Ncama, 2019).

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20 Further, the way to a breast cancer diagnosis is difficult, because there are no standardized instructions on how to recognize breast cancer symptoms (Grosse Frie, 2018).

That makes it plausible that women lose themselves during the process and quit medical treatment and seek traditional treatment (Grosse Frie et al., 2018).

Lastly, Ekortarl, Ndom and Sacks (2007) give financial reasons for the choice of traditional treatment. The lower costs of traditional healers are a trigger for women in SSA to seek alternative treatment (Ekortarl, Ndom, & Sacks, 2007).

6.1.2. Cultural reasons

Besides the structural explanations, studies give cultural reasons for the use of traditional healing. Cultural explanations are related to the beliefs about the cause of the disease and the fear that the disease is incurable (as discussed in the previous chapters).

Ekortarl, Ndom and Sacks (2007) give the traditional belief in the cause of death as a reason for alternative treatment. The alternative treatment fits with their cultural belief. This is supported by a study of Opoku, Benwell and Yarney (2012), who mention that herbalists say that breast cancer cannot be treated by physicians and only by spiritual forces because it is a supernatural disease. This is in line with findings of Sheppard, Christopher and Nwabukwu (2010), they indicate that the spiritual belief withholds women from seeking care by medical practitioners. Regardless of their educational level, in times of vulnerability, women in SSA have strong beliefs in supernatural powers and resort to herbalists and prayer camps (Clegg- Lamptey, Dakubo, & Attobra, 2009).

Moreover, because breast cancer is perceived, by many women in SSA, as an incurable disease, it is in their eyes ineffective to undergo medical treatment (Olopade, Falkson, &

Williams, 2010). It is seen as a waste of time to undergo a (painful) screening and traditional healing is their way to still get hope (Olopade, Falkson, & Williams, 2010).

Women only went to seek medical care when they realize that the traditional treatment was not helpful or when they are about to die soon (Ekortarl, Ndom, & Sacks, 2007). This is confirmed by Meacham et al. (2016), who indicate that if symptoms got worse or stayed the same, women sought medical care.

Malpractice by medical doctors

Even when women sought medical treatment, this was not always effective. Several studies show that doctors handle a breast cancer patient incorrectly. The malpractice by medical doctors is because of poor communication with the patient and because of medical errors.

Bonsu and Ncama (2019) indicate that doctors do not communicate the diagnosis well with their patients (Bonsu & Ncama, 2019). Sometimes doctors did not tell the patient she had breast cancer but just removed the lump. Olopade, Falkson and Williams (2010) declare this, they mention that the direct exposure of the cancer diagnosis to the patient is seen as inappropriate because it could cause fear by the patient with as consequence worsening their health (Olopade, Falkson, & Williams, 2010). Physicians do not want to harm the patient and to take away their hope. For that reason, sometimes physicians chose to expose the disease of the patient to the family first (Olopade, Falkson, & Williams, 2010).

Several studies point out that doctors do not treat the disease properly. Grosse Frie et al. (2018) indicate that doctors prescribed cream or antibiotics. Even when the patient did not get better, they came back. The doctor called it a ‘furuncle’ and said that antibiotics would stop it from growing (Grosse Frie et al., 2018). Bonsu and Ncama (2019) confirm this. They found that women delayed treatment, because of doctors who misrecognized the symptoms.

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21 Moreover, Bonsu and Ncama (2019) mention that women received, for a period, painkillers from the pharmacy. Kohler et al. (2016) also found that women were given painkillers before they received a referral. Additionally, Opoku, Benwell and Yarney (2012) found that 17.3% did not participate in mammography screening, because the doctor did not refer them.

6.2. Influence from others

The decision which kind of care women in SSA choose is often not made by themselves, but by others. The influence of others is important in the decision about what kind of health care women choose. The choice is dependent on people who are close to the patient and health providers.

6.2.1. People close to the patient

Women need approval from others in which health practitioner they choose (Maree &

Wright, 2010). In SSA, help-seeking behaviour is collaborative. The choice in healthcare is often not made by the patients themselves, but by family or others from the community (Olopade, Falkson, & Williams, 2010). Because breast cancer patients are afraid for refusal of their family and afraid of having a lonely death, it is important for them to please their family and listen to them (Olopade, Falkson, & Williams, 2010).

Different studies support this and point out that the influence of others, mostly family, friends or husbands, had an impact on the action to seek treatment and their decision to seek traditional healers. Bonsu and Ncama (2019) indicate that recommendations of friends and relatives stimulated women to seek traditional treatment, like prayer camps and herbalists (Bonsu & Ncama, 2019). This results in the delay of treatment (Bonsu & Ncama, 2019). This is in line with Grosse Frie et al. (2018), they indicate that when women were supported by their family, it was often in traditional treatment. Additionally, Meacham et al. (2016) mention social pressure to continue with the traditional treatment, because it is culturally more accepted and cheaper.

Most studies mention that patients are supported, by people close to them, to seek traditional treatment. However, Ekortarl, Ndom and Sacks (2007) is the only study that found that the family supported the patient in medical treatment. This study was among cancer patients and not breast cancer patients and it was one out of the twenty cancer patient who mentioned this.

6.2.2. Health providers

Health providers, traditional healers and medical doctors, influence the choice of healthcare of the patient too. Medical doctors often refer patients to traditional healers, but traditional healers do not refer their patients to medical care.

Physicians in SSA often refer breast cancer patients to traditional healers, to give a breast cancer patient satisfaction and hope (Olopade, Falkson, & Williams, 2010). This is supported by Bonsu and Ncama (2019), they indicate that an assistant of the doctor was the only one available in the hospital, because the doctors were on a strike. The assistant proposed a traditional healer to the breast cancer patient. She suggested a herbalist because she had positive experiences with it (Bonsu & Ncama, 2019). Sheppard, Christopher and Nwabukwu (2010) indicate that their decision to seek medical treatment is dependent on their regional leaders.

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22 However, Opoku, Benwell and Yarney (2012) found that traditional healers barely referred their breast cancer patients to a medical doctor, because they felt superior to medical doctors. Traditional healers were convinced that their treatment was the best way to treat breast cancer (Opoku, Benewell, & Yarney, 2012).

Conclusion

The choice of breast cancer care is about which treatment women believe in. The belief in traditional healing and the influence of others are cultural barriers to the choice of care. Most patients choose traditional treatment to cure breast cancer. The choice for traditional treatment is because of structural and cultural reasons. Structural reasons are the large availability of traditional healers and the poor procedure and high costs of medical care.

Cultural reasons are the belief that breast cancer is incurable and that the disease is caused by supernatural forces.

Traditional treatment is not effective. However, even when women sought medical care, this was also not always efficacious. Medical doctors do not communicate well with their patient and do not treat them correctly.

People close to the patient and health providers have a big influence on the choice of treatment and most of the time women are supported by others to seek traditional treatment.

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7. Discussion

7.1. Interpretation of findings

The study aimed to understand the cultural barriers to the early detection of breast cancer among women in SSA, to increase the survival rate of breast cancer in this region. During the help-seeking behaviour, there is a process going on from the recognition of the disease to the decision to seek help to the choice of care.

Stigma is, in the first instance, mentioned as a separate barrier in this study. However, it turned out to be a recurring factor that is interrelated with other cultural barriers during the process of seeking help. Stigma influences other cultural barriers, but other cultural barriers also stigma stigma. Like this, stigma is maintained. Besides, stigma withholds the whole process of seeking help. A stigma around something means that people consider something as a disgrace, which is associated with feelings of shame towards it.

Stigma challenges educational solutions

Stigma challenges educational solutions, mentioned in the extracted results and previous studies. Findings of this conducted systematic literature study show that providing women with information could solve cultural barriers that influence the process of seeking help.

However, stigma challenges this because it is withholding women from receiving information.

The stigma, found in this conducted study, also challenges the educational solutions mentioned in previous studies.

This conducted study showed that the cultural barriers influencing the help-seeking behaviour process could be solved with education. Clegg-Lamptey, Dakubo and Attobra (2009) and Meacham et al. (2016) both show that (mis)conceptions could be taken away to expose the patients to breast cancer survivors. The share of their experiences and knowledge about breast cancer would take away (mis)conceptions of the disease by women and thus the anxiety towards breast cancer. Moreover, Opoku, Benwell and Yarney (2011) indicate that men should be educated about breast cancer so that they could be good support for their wives.

Because stigma is so closely interrelated with those barriers, providing information should also contribute to tackling stigma. However, stigma is at the same time withholding women from receiving information. This hinders educational solutions mentioned in previous studies as well.

For example, Sharp et al. (2019) indicated that educating women during their pathway of seeking help would improve breast and cervical screening. Nevertheless, this conducted study found that shame towards family and husband make women avoid the disease. The avoidance of the disease results in that women simply do not want to hear about it, which withhold women from receiving education.

Besides, a previous study of Nakanjako et al. (2013), about the cultural barriers to HIV/AIDS prevention, indicate that health professionals should be educated in order to take away the judging attitude towards HIV/AIDS patients in SSA. However, this conducted study about breast cancer shows that the avoidance, created by stigma, hinders the effectiveness of educating health professionals. Women do not see a doctor to avoid confirmation of having breast cancer or women seek traditional healers in order to get hope. Like this, women will not be reached by educating health professionals.

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References

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