“Our Beauty Is in Our Breasts”: A Culture-Centered Approach to Understanding Cancer Perceptions in Kwa Zulu Natal,South Africa

Abstract

Breast cancer is an incapacitating physical illness. It was once reported predominantly by patients in developed countries. With the advent of globalization, it is increasingly becoming a major health concern in developing countries such as South Africa. Breast cancer researchers have continuously advocated for original studies that address this condition from a sociocultural perspective. Consequently, in this article I examine the perceptions of breast cancer patients from underprivileged parts of Kwa Zulu Natal (KZN). Thirty semi-structured interviews were conducted with Zulu women at a tertiary hospital in the region. A culture-centered approach was utilized to gauge their perceptions of life as breast cancer patients within the conservative Zulu community. The findings revealed that this ailment is generally misunderstood, which has adverse implications for the patients. Furthermore, there is a dire need for breast cancer communication interventions that can acquaint the Zulu community with this condition.

Keywords

breast cancer communication culture-centered approach perceptions developing country Zulu South Africa qualitative

Introduction

Breast cancer is a colossal health concern worldwide. “According to the 2015 Global Burden of Disease (GBS) study, of the 17.5 million cancer cases globally, breast cancer accounted for 2.4 million new cases and 523 000 deaths in 2015” (Breast Cancer Prevention and Control Policy, 2017, p. 10). It affects both genders. However, in this article, I examine it solely as it pertains to females (Daly & Olopade, 2015). Research studies have consistently indicated that women from developing countries had a lower risk of developing breast cancer than their counterparts in the developed world (Abuidris et al., 2013; Newman, 2015). In fact “incidence rates vary from 19.3 per 100 000 women in southern Africa to 89.7 per 100 000 women in Western Europe, and are high in developed regions of the world and lower in most of the developing regions” (du Plessis & Apffelstaedt, 2015, p. 43). Various reasons were cited for this reality. For example, researchers hypothesized that women from developing countries led a healthy lifestyle, which has benefits such as promoting breast feeding and delaying menarche (Tetteh & Faulkner, 2016). It was assumed that these advantages acted as “protective factors” that reduced their risk of developing breast cancer (Tetteh & Faulkner, 2016, p. 148). It is now theorized that influences such as globalization have lowered the efficacy of these protective elements. As a result, women in developing countries are increasingly being diagnosed with breast cancer. In fact “in South Africa, breast cancer is the leading type of cancer affecting women” (Reddy et al., 2017, p. 10). Furthermore,

the determination of accurate cancer statistics remains a challenge . . . largely due to the lack of resources to establish and maintain national cancer registries. It is therefore likely that there is an underreporting and underestimation of the burden of cancers in this region. (Reddy et al., 2017, p. 10)

Despite the unavailability of exact statistics, it is now accepted that breast cancer “is the main cause of cancer-related death in women in less developed regions and the second most common cause in developed countries” (Ngidi et al., 2017, p. 595).

Evidently, there is copious data about the scientific aspects of breast cancer. However, previous researchers have called for new studies that address this issue from a sociocultural perspective (Forte, 1995; Kline, 2007; Kreuter & Mclure, 2004; Mdondolo et al., 2003). Scholars such as Tetteh and Faulkner (2016) have previously stated that “we need to research breast cancer not only from a biomedical perspective but also from a sociocultural perspective, which considers how social, cultural and economic factors impact the presentation and experience of the disease” (p. 147). Acquiring knowledge about this illness from a people-oriented perspective, instead of an exclusively clinical one, is important because the aforesaid factors “influence cancer care in resource-limited settings” (Tetteh & Faulkner, 2016, p. 147). Furthermore, these insights can be utilized to create “culture congruent health education campaigns on early detection and treatment of breast lumps” (Mdondolo et al., 2003, p. 87). My Zulu heritage is another reason for my interest in this subject matter. I am a Black, Zulu woman, who was born and raised in the Kwa Zulu Natal (KZN) province. My awareness of breast cancer was once mainly anecdotal, because it was derived from informal observation. To enhance my knowledge of the disease, it was important to transition from haphazard conjecture to concrete, evidence-based research.

In this article, I heed the previous researcher appeals by examining the breast cancer perceptions of women from underprivileged areas in Kwa Zulu Natal, South Africa. The central question that I aim to answer is, “How do Zulu breast cancer patients perceive this disease?” Culture informs how people navigate every aspect of their life (Kline, 2007). Therefore, I adopted a culture-centered theoretical approach to grasp the nuances of their views of life as breast cancer patients in the Zulu community. Structurally, I begin the article with a succinct overview of the Kwa Zulu Natal (KZN) province. I briefly summarize Zulu people’s history and their defining traits. In so doing, the reader can appreciate the core values that are intrinsic to this group and their cultural milieu. I then outline previous perceptions of disease in general and breast cancer in particular among the Zulu. Data analysis is embedded in Mohan Dutta’s Culture-Centered Approach theoretical framework, which accounts for the often disregarded sociocultural variables that shape people’s perceptions. I conclude the article with a recapitulation of the study’s most pertinent findings. I present original data which may be enriching to researchers who are eager to gauge a conservative community’s perspective of life with a debilitating illness.

Kwa Zulu Natal: An Overview

Kwa Zulu Natal (KZN) is an expansive, densely populated region of South Africa. The country has an estimated population of 56.5 million and 11 million originate from KZN (Statistics South Africa, 2017, p. 7). The province is commonly regarded as the “Kingdom of the Zulu” and marketed according to this mantra by the South African tourism sector (Whitelaw, 2008, p. 47). The province’s name literally translates to “home and birthplace of the Zulu” (Whitelaw, 2008, p. 47). KZN is actually a consolidation of various smaller clans that were usurped by King Shaka Zulu during the 18th century (Laband, 2008). They gradually evolved into a unitary homogeneous tribe. Zulu acquired a reputation as a tenacious and deeply spiritual leader. These traits persevere in present-day KZN and have endowed it with “its own identity, body of memories and traditions” (J. Wright, 2008, p. 36). Despite this prolific history, KZN is burdened by various structural difficulties such as poor infrastructure, transport systems, and land development complications (KZN Provincial Growth & Development Strategy 2035 [KZN PGDS], 2016). These issues are particularly pronounced in the rural areas (KZN PGDS, 2016). KZN also has a 47.8% poverty rate (Socio-Economic Review and Outlook [SERO], 2017). Furthermore, it has a considerable number of people who are living with easily communicable diseases such as HIV/AIDS. Currently, “about 52.6 percent of HIV positive people have been placed on anti-retroviral (ARV) treatment in the province” (SERO, 2017, p. 26). Thus, breast cancer is often a secondary priority because KZN’s health budget is utilized toward containing these easily transmissible diseases (Reddy et al., 2017; Stefan et al., 2013).

Older Factors That Influenced Breast Cancer Perceptions

Previous breast cancer literature indicates that there are a myriad influences that inform how South African women perceive this disease. They may seem inconsequential, however upon closer examination, their significance becomes evident. Financial constraints are an example. A study that was conducted at the Groote Schuur Hospital revealed that the patients perceived breast cancer and its treatment as an expensive endeavor (S. V. Wright, 1997). This is because actively pursuing treatment—even at a public hospital—caused them to “lose working hours . . . pay for child minders and public transport” (S. V. Wright, 1997, p. 1543). In a low-income country such as South Africa, seemingly minor expenses are actually a massive financial burden. According to Dickens et al. (2014) “public-sector patients usually travel by public” (p. 2174) transport (privately run fare-charging minibusses) or by walking. Transport costs represent more than 10% of monthly household expenditure for the poorest quintile of the population.” In this way, we can appreciate how breast cancer could reasonably be perceived as a costly health issue.

Another factor that has affected conceptions of breast cancer and possibly made it a challenging subject to engage in is the marginal status of women in South Africa. Perceptions of their subservience are reportedly more pronounced within the Zulu community. To this end, Mncwango and Luvuno (2015) assert that “Zulu men argued that in Zulu culture women are inferior to men . . . in Zulu custom a woman is often regarded as a child even if she is the eldest at home” (p. 246). These pervasive cultural dictates limit a woman’s expressiveness about everything, including the diseases that compromise her health. Other previous studies also suggest that Zulu women may experience difficulty with formulating accurate breast cancer opinions because of the paranormal connotations their community attaches to it. According to Leclerc-Madlala (2001), the Zulu believe that “the female body is the acknowledged site of male sexual pleasure and the “nest” within which new members of the patrilineage are nourished and grow, and from which they are brought forth” (p. 541). However, this only applies to the healthy female body. Once it is compromised by disease, it is considered a site of “umnyama (darkness)” until such time that the illness invading it is extracted (Leclerc-Madlala, 2001, p. 541). The patient is then quarantined via a process known as ukuzila (Ngubane, 1977, p. 274). The prospect of being evaluated in these punitive terms and eventually isolated by one’s community may possibly create negative breast cancer perceptions. This assertion is further verified by a study of South African breast cancer survivors (whose diagnosis coexisted with another illness), which determined that “the women who struggled the most were those whose social worlds had eroded along with their illnesses” (Bosire et al., 2020, p. 924).

Finally, “in South Africa, especially within rural communities, cancer is sometimes believed to be caused by witchcraft” (Dickens et al., 2014, p. 2180). This trend of viewing disease through a supernatural lens appears to be prevalent among the Zulu. According to Brown et al. (2018, p. 2),

Zulu patients typically engage in cultural health beliefs and practices that are in contrast to the Western medical model, within which medical training is housed. They may conceive illness as resulting from displeasing the ancestors, witchcraft or troublesome social relationships.

Essentially, the Zulu community believes that diseases either have a “proximate” or “ultimate cause” (Mills, 2005, p. 132). The former is regarded as fairly negligible, as it is the physical presentation of the disease that can be treated with medication (Mills, 2005). The latter is conceived as the core cause of disease, because of its spiritual origins (Mills, 2005). Treating it is regarded as more arduous as it requires liaising with the ancestors and eliminating the illness out of the body (Decoteau, 2013; Henderson, 2005; Thornton, 2002). Appeasing the ancestors is achieved through sacraments or gifts (Decoteau, 2013). “Cleansing or purging unwanted toxins or infections calls for drinking medicines that will induce vomiting or diarrhea or steaming the body with herbal infusions to sweat out the infections” (Decoteau, 2013, p. 63). Researchers generally regard all the aforementioned elements as contributors to women’s comprehension of breast cancer. Further in the article, the findings gleaned from actual breast cancer survivors reveal whether the researcher sentiments are accurate.

Theoretical Framework: The Culture-Centered Approach

The overarching purpose of this article is to document the perceptions of breast cancer survivors from a traditionalist community, which has limited resources. Consequently, I chose the culture-centered approach as a theoretical framework to guide data examination and discussion because it is all-encompassing. It considers the disregarded constituents that are present in all sociocultural settings. Briefly, it was developed primarily by Mohan Dutta. Other health communications scholars such as Collins Airhihenbuwa (1995) and Deborah Lupton (1994) recognized the need for cultural sensitivity in this field. They were instrumental in popularizing the culture-centered approach. Dutta and fellow proponents of this framework recognized that many specialists and interventions favored theoretical models that were incompatible with developing countries. Consequently, their efficacy was greatly reduced. For any intervention to resonate with its intended audience, it needs to consider their particular way of life. It is my view that the culture-centered approach meets this criterion. The key tenets which make it an appropriate theoretical lens with which to support this article’s findings include the following:

The culture-centered approach is concerned with illuminating how social structures inform how people relate to each other (Dutta, 2008; Dutta-Bergman, 2005). In this instance, the term “structures” refers to a community’s “organisations, processes and systems” (Dutta, 2008, p. 62). For the purposes of this article, I am focused on understanding how structures affect people by creating “conditions of stigmatization which continue to construct those at the margins as inferior, primitive and passive” (Dutta, 2008, p. 62). Social structures such as hospitals are titanic entities that all community members depend on. Perceptions of illness are inevitably shaped there and the culture-centered approach is useful for gauging them.

The culture-centered approach is particularly sensitive to examining how values influence people’s conception of health problems (Dutta, 2008, 2012). Values are those deeply ingrained principles that people regard highly (Airhihenbuwa, 1995). The sociocultural environment is a potent force that actively constructs values (Dutta, 2008). The culture-centered approach emphasizes the need for researchers to recognize and appreciate the unique values of diverse social contexts. It underlines the importance of respecting and not condemning the values of every community (Dutta, 2012). It was useful in helping me to unearth some of the Zulu values that influenced the study participant’s breast cancer perceptions.

Furthermore, the culture-centered approach concerns itself with examining how context impacts people’s health experiences, particularly those who are located on the borders of society. “Context refers to the local and immediate surroundings within which cultural members make choices” (Dutta, 2008, p. 63). It is the geographic site where people undergo their health crises and strategize about appropriate routes to wellness. It should also be noted that “localised contexts surround health meanings, health values, health beliefs, and health practices, exist in a continuous flux with the broader structures surrounding them” (Dutta, 2008, p. 63). This means that the perceptions of health—or lack thereof—change constantly. Furthermore, they fluctuate according to the changes that occur within the community at large.

In addition, the culture-centered approach criticizes the understated yet destructive biases that are inherent among all health care and health communication practitioners. As this is a study that is conducted with patients who are in constant contact with this group of professionals, they may have been subjected to their biases. Therefore, it was important to utilize a theoretical lens that makes identifying them easier. They include the status quo bias which refers to the propensity of health structures to prioritize their needs and operating patterns over those of sick people (Dutta, 2008). Then there is the decontextualized bias where specific behaviors are viewed outside of the social setting in which they occur (Dutta, 2008). For example, late breast cancer consultations may be isolated and viewed as irresponsible behavior by health care staff. However, while making this observation they may neglect the factors that cause this, such as the sociocultural implications of a female admitting that she has breast cancer (Alicikus et al., 2009; Koon et al., 2013). The cognitive bias criticizes health communication researcher’s proclivity for understanding health behavior solely at the intellectual level (Dutta, 2008). The justification for this is that furnishing people with correct information is sufficient for altering their negative behavior patterns. The culture-centered approach highlights the inaccuracy of this assumption. It recognizes the influence that variables such as cultural norms have on behavior. Overall, the culture-centered approach is a perspective that underscores the importance of acknowledging the array of factors that are inherent in every social setting, as they control peoples’ views on health.

Method

Research Design

As aforesaid, prior to embarking on this study my knowledge of the subject matter was limited. Therefore, the entire project was exploratory as it employed “an open, flexible and inductive approach . . . to look for new insights into phenomena” (Terre Blanche & Durrheim, 1999, p. 39). Consequently, I adopted a qualitative approach to gathering data because it lends itself to “description, analysis and interpretation” (Wolcott, 1994, p. 9). Furthermore, it is a method that permits comprehensive data analysis. Thirty semi-structured interviews were conducted. These types of interviews ensure that communication between the researcher and participant is reciprocal (Wolcott, 1994). The participants can respond without restrictions and the researcher can probe them further, if need be (Wolcott, 1994). An hour was allocated for each interview. However, participants could leave at any time, without any negative repercussions.

Research Site

The hospital in which the study was conducted is located in Kwa Zulu Natal, South Africa. Its precise identity has been withheld to protect the participants. However, it is considered as one of the most technologically advanced health facilities in South Africa. Furthermore, it is a referral hospital. This means that patients from the smaller public health institutions are referred there for various treatments. Consequently, it harbors the largest pool of breast cancer patients in the Kwa Zulu Natal region.

Participant Details

The 30 participants were selected purposefully (Terre Blanche & Durrheim, 1999). Their ages ranged from 22 to 82 years. Being flexible with the age stipulation was intentional. It allowed me to gauge how breast cancer affects women who are at varying stages of life. The participants identified as Zulu and were all from underprivileged sections of Kwa Zulu Natal. The younger participants (45 years old and under) had a basic education and English comprehension skills. The older participants (45 years and above) were illiterate and were fluent solely in Zulu. Half of the participants had minimum wage employment such as domestic work and flag personnel at road construction sites. The rest of the group were either completely unemployed or had been forced to resign from work after commencing chemotherapy. No negative cases were sought.

Inclusion/Exclusion Criteria and Recruitment Procedure

The inclusion and exclusion criteria were largely determined by the research aims (Robinson, 2014). As stated previously, one of the major objectives of this study was to understand breast cancer from a Zulu female perspective. Therefore, the primary inclusion criterion was that the participant be currently living with breast cancer and receiving treatment at the research site. A secondary criterion was their identifying as Zulu. Prospective participants were excluded if they had been diagnosed with a different type of cancer (for example, cervical), as that would have deviated from the study’s goals (Robinson, 2014). The participants were recruited with the assistance of the hospital staff. The nurses on duty asked for volunteers and emphasized that participation was not mandatory. All the participants were given breast cancer–themed toiletry packages at the end of their interviews.

Data Collection and Instruments

Data collection began in 2016 where 15 participants were interviewed. It continued in 2017 with 15 more interviewees until saturation was reached (Fusch & Ness, 2015). This was determined by the similarity in the participant’s responses to the questions. In addition, the rich data that were obtained was adequate for future replication (Fusch & Ness, 2015). The data were captured with an audio recorder and later transcribed from Zulu to English. The data were obtained through the aforesaid semi-structured interviews, which were guided by an “interview schedule” (McIntosh & Morse, 2015, p. 5). This document consisted of three main questions that were designed to

ascertain the participant’s general or scientific knowledge of breast cancer prior to being officially diagnosed,

understand the positive and negative changes that occurred after their diagnosis, and

understand the accessibility of breast cancer information and support during their treatment.

The three central questions were the following:

How did you discover that you had breast cancer?

How has your life changed since your breast cancer diagnosis?

What or who was your source of breast cancer information prior to your diagnosis?

Additional probing questions were integrated into the interview schedule. Examples of these are the following:

Please talk me through your treatment journey?

How often do you talk to your family about breast cancer?

How can breast cancer information be altered to resonate with a Zulu patient?

Ethics

Gathering data without infringing on the participants’ rights was imperative. Therefore, a gatekeeper letter was obtained from the Kwa Zulu Natal Department of Health (DOH). Also, the hospital (research site) management forwarded a letter of support. Once these two documents were secured, the Ethical Clearance Board at the University of Johannesburg (UJ) granted permission to embark on the study. The participants were furnished with informed consent letters written in both Zulu and English. This was done to accommodate the younger patients who had an elementary understanding of the latter language. Their names were substituted with numbers to protect their identities.

Data Analysis

Data were analyzed by means of a thematic analysis. This is a “form of pattern recognition within the data where emerging themes become categories for analysis” (Fereday & Muir-Cochrane, 2006, p. 4). There are six steps to successfully conducting a thematic analysis. Braun and Clarke (2006, p. 87) outline them thus:

Familiarize yourself with your data

Generate initial codes

Search for themes

Review themes

Define and name themes

Produce report

Essentially, I methodically read data that were generated by the participants. I selected the most commonly cited themes. These were condensed even further for a more nuanced analysis. After this careful review, they are presented and discussed in the section below.

Validity and Reliability

Ensuring that the study’s findings were valid and reliable was of paramount importance. Conducting quality interviews was among the measures that I undertook in order not to undermine those two research tenets. Consequently, I adhered to Kvale’s (1996, p. 145) qualitative interview evaluation criteria. Number two of the six specifies that “the shorter the interviewer’s questions and the longer the subjects’ answers, the better.” A further indication of a good interview is its capacity to elicit “rich, specific, and relevant answers from the interviewee (Kvale 1996, p. 145). I adhered to these standards by integrating excerpts that were extracted directly from the participants’ interviews. Their richness and specificity is clearly illustrated in the findings section of this article. In addition, as a Zulu woman myself, it was important to practice “radical self-reflexivity” (Cunliffe, 2003, p. 991) to prevent my subjectivities from permeating into my analysis of data. This process was facilitated by the field notes. Initially, I utilized “scratch notes” which were sometimes written in the presence of the participants (Sanjek, 1990, p. 95). These were compiled into a comprehensive report at the end each interview day (Sanjek, 1990). The notes were not included in the article for fear of detracting from the participant’s data. However, they were a vital reminder to commit to constantly challenge my “intellectual suppositions” (Cunliffe, 2003, p. 991).

Findings

Ukudlavuza (Devouring) Versus Ukwamukela (Acceptance)

The interviews revealed that breast cancer perceptions are diverse among Zulu patients. If they were to be captured on a continuum, they would range from moderately optimistic to intensely cataclysmic. The feedback also suggests that perceptions are influenced by age. The participants who were over the age of 45 were generally more pragmatic and accepting of their new reality. The younger women were (justifiably) more pessimistic:

P (denotes participant): It is a deeply painful word. That word umdlavuza is painful. It’s painful to hear someone say umdlavuza.

I (denotes interviewer): Really? Please tell me why?

P: It’s painful to hear someone say umdlavuza. When someone says umdlavuza, you tell yourself that this thing is eating me every day. You just think there’s nothing left to who I am. It’s painful for them to say it out of their mouth.

P: You know what? I grew up in the rural areas, where we had to farm. We had everything. That’s why I say I should’ve been retired by now. At a certain time, we had to plough the soil. If you were a girl, you knew that at a certain time you had to wake up. It’s not like our grandchildren today who sleep. They wake up at 10. Now with that, how do you expect to be healthy . . . Ukwamukela (Acceptance) is what is needed. Let us not make our children sick.

The contrast in perceptions is clear in the above excerpts. The younger participant perceives breast cancer as distressing, while the older patient perceives it as requiring ukwamukela (acceptance). The culture-centered approach’s emphasis on being culturally competent as a researcher motivated me to research the etymological origins of umdlavuza, which is breast cancer in Zulu (Dutta, 2008, 2012; Dutta-Bergman, 2005). I discovered that umdlavuza is a word that vividly conveys the internal mutation of disease. “Ukudla” refers to food or the act of “eating” and to “dlavuza” means to “tear into or apart” or to “devour” (Isizulu Oxford Living Dictionaries, 2017). The participant’s knowledge of the roots of the word is responsible for its triggering effect. It evokes the image of the cancer ravaging her internally. In addition to the physical damage, the participant envisioned the disease consuming the very essence of who she is. The older participant appears to be from the generation of Zulus who maintain the stoic disposition that their community is renowned for (Cooper & Mullin, 2001; Laband, 2008). She appears to be accustomed to hardship, hence her perception of breast cancer as another laborious endeavor that must be endured courageously. It is possible that her years of immersion in the Zulu cultural context have conditioned her to be dispassionate and accepting of challenges. Younger Zulu women lack this grooming, hence their emotionally charged perception of breast cancer.

Breast Cancer as an Entryway to other Illnesses

Data indicated that some of the participants did not satisfactorily understand the specifics of breast cancer or its treatment. They seemed to perceive it as a monolithic illness that gradually triggers other health concerns. This is evident in the following excerpts:

P: [there was] vomiting, diarrhea, your skin changes, your nails may come off, you might become bloated-some people do. They didn’t tell us about that, but some people get swollen feet, they sweat a lot, they have insomnia, your head feels frozen as if it has been placed inside a fridge and so on. It happens to certain people. It just depends on what your body is like. Others are just fine. Their skin doesn’t change at all, they are fine

P: Sometimes things don’t go well in my head. I wasn’t even able to hear things at a certain point. Sometimes I wouldn’t even recognize the people that I know you see? I would just forget them. Even my boy would say “your sickness is spreading even to your min.”

Evidently the participants perceived breast cancer as a physically and psychologically grueling illness. However, both participants appear to associate it with a degree of capriciousness. The first participant’s excerpt outlines the various physical side effects that it induces. She emphasizes that this is dependent on each individual’s physical resilience. The second participant states that the breast cancer affected her mental well-being to the degree that it was noticeable to her family. The first participant explicitly states that they were not adequately informed about all the physical changes that would occur. The second participant’s statement about breast cancer affecting her brain, her eye-sight, and other parts of her body confirms the inadequacy of the information that is provided to patients. While past research verifies the psychological pressure (Odigie et al., 2010) that is associated with breast cancer, there is little evidence of its correlation with weakened eyesight and cerebral instability. The most compelling deduction that can be extracted from both participants is the communicative marginalization that affects their understanding of their condition (Dutta, 2008). Health care professionals are equipped with accurate, scientifically sound information about breast cancer. However, they appear to not convey it to the patients properly. Clearly, it impedes their comprehension of breast cancer.

Breast Cancer as Shame Inducing

Some of the participants perceived breast cancer as a highly stigmatizing and socially ostracizing illness. It drew unsolicited public attention, which made them self-conscious:

P: I am dead, but I’m walking. It’s only that God is still refusing with my spirit. I don’t get any help, I don’t know where to go if I do need help, the community shuns me. You know us cancer patients are bigger outcasts than people with HIV/AIDS, even though I got the cancer from my genes or from bad luck. It’s not like HIV/AIDS. Everyone knows where you get HIV/AIDS from. Rarely do you get it from a car accident. There’s only one way to get HIV/AIDS. But those people are not shunned in the same way that we are. When they look at you . . . [claps hands and mimics a sad face] They say “awu sham.” Others lose it even more by actually asking you: “oh I heard yo’re sick, awu shame.” Saying “sham,” on its own means that it’s over for me. However, people with HIV/AIDS take their pills. “Hawu oh, you have HIV/AIDS gir’?” “Ai i’s alright because of the pills.” With us, the person will start off by saying “awu shame aaaaaah, they say this thing kill.” There’s nothing else that comes out of their mouth. They always start off with: “they say this thing kill”. I don’t want sympathy. I don’t like pity. Even at home, I don’t like it when they keep saying: “how do you feel.” If I’m sick, I’ll say I’m sick. When I am not sick you will see me doing my things the way I usually do them. I don’t way excessive pity.

This finding validates Dutta-Bergman (2005, 2012) claim that social structures heavily influence community members’ comprehension of illness. Evidently, the Zulu community has a hierarchical understanding of health issues. Health conditions that are well publicized and thus familiar to them appear to be at the top of this hierarchy. These include HIV/AIDS. They are normalized and accepted within the community. Diseases that are opaque such as breast cancer seem to not be accepted with the same ease. They elicit a multitude of negative reactions such as excessive pity, assignment of blame for being sick and fear in some community members. This specific excerpt also conveys the participant’s yearning for a changed status quo toward breast cancer and its patients.

Breast Cancer as a Biomedical Health Issue

The previous studies that are cited in an earlier chapter of this article suggest that the Zulu community have a dual conception of disease (Henderson, 2005; Mills, 2005; Thornton, 2002). They maintain that the Zulu believe that its true source is always spiritual and requires traditional healers to mediate with ancestors, on the sick individual’s behalf (Henderson, 2005; Thornton, 2002). According to these older findings, the physical manifestation of disease is merely an indication of this spiritual disconnect and requires a traditional healer to purge it from the body. However, many of the study participants indicated that perceiving their condition in these terms may be antiquated:

P: When the doctor removes this thing, he will know that it is here, it is out now. When you take those muthi (medication) how will you know what is happening, whether it is truly removed? I don’t believe in that. Anyway, in the end you can do it all, but you have to come to the hospital whether you are afraid or not.

P: I have never even tried Zulu muthi. My reason for not trying Zulu muthi is that we were told that if you are on chemotherapy, you shouldn’t drink something that’s going to expel it. Have you noticed that when you visit a person such as an inyanga [tradition healer/herbalist], he usually gives you something and tells you to vomit? As chemo patients, we are not allowed to vomit. We are not allowed to do enemas. You are not allowed to exhaust your body because the chemo is exhausting by itself. So, I haven’t ingested anything. It’s only now that I’m finished with it [chemotherapy] that I’ve started drinking “Foreve.” I buy “Foreve,” [Herbal tonics from the Forever Living Company]. I don’t see what it does, but I drink it anyway.

Both excerpts corroborate Dutta’s (2008) claim that the convictions that are formulated within sociocultural contexts and spaces are incessantly in flux. Evidently, Zulu women no longer perceive their illness as being rooted in spirituality nor that healing it requires divination. They are increasingly viewing breast cancer through a biomedical lens (Mathibela et al., 2015). To this end, the first participant appears skeptical about traditional healers’ level of expertise and precision when treating breast cancer. This is a commonly voiced concern by researchers (Mathibela et al., 2015; Thornton, 2015; Tomaselli, 2011). Rarely is it expressed by a patient, particularly one within a community where traditional healers are abundant. Furthermore, traditional healers once superseded medical practitioners in Kwa Zulu Natal (Mathibela et al., 2015; Thornton, 2002, 2015); this seems to no longer be the case. The participant now perceives consulting them as a futile endeavor because she will inevitably have to go to a hospital. The second participant states that she has never utilized Zulu medication. From this, we can infer that she has never consulted traditional healers who dispense it and placate the ancestors on a patient’s behalf. Her reservations are related to the purging treatments that the healers reportedly provide. In fact, she prefers to drink an herbal supplement by the Forever Living brand, as it hydrates the body instead of draining it of fluids. Overall, data from both participants demonstrates that Zulu spiritual beliefs are gradually becoming outmoded and they do not shape breast cancer perceptions to the extent that they once did.

Breast Cancer as an Invasion of Privacy

Several study participants perceived breast cancer as a secret that is to be safeguarded fiercely. This may indicate that privacy is an important value among the Zulu (Airhihenbuwa, 1995). Two participants justified their decision to keep their condition private thus:

I: Who did you tell at home?

P: I told my boy

I: How old is he?

P: He’s forty-something. He’s from 1969. So, I only told him and nobody else. And I also asked him not to tell anyone else. If I die, let me die.

I: Hawu . . . why?

P: People talk. They go around “plantin.” “You see her? She has cance,”-you see? So I was suspicious

I: Were you telling him because he’s the eldest or-?

P: He’s not the oldest. He was the one closest to me. My daughter does not come near me. I don’t know what I did to her. So, I told him because I know that he’s the one who loves me.

P: Even if I know that I’m going to cover up, there will be someone who knows that “X doesn’t have a breast” and then they will also tell someone else.

Both participants appear to associate breast cancer with a loss of their privacy. They cite concerns with communal scrutiny and gossip as their motivation for hiding their condition. Data also suggest that as a social structure (Dutta, 2008), Zulu society may not be sensitive to women with breast cancer. This hypothesis is moderately verified by the first participant’s justification for confiding solely in her son, because he is secure in his love for her. We can infer that she fears sharing her condition with other community members because their capacity to support her is indeterminate. Overall, we can surmise that fears of the community’s withdrawal of acceptance and emotional support have a considerable effect on Zulu women’s breast cancer perceptions. In addition, they indicate that the Zulu community needs breast cancer interventions that promote compassion and unconditional support for women with this illness.

Breast Cancer as an Expensive Venture

All the participant’s data demonstrated that they perceive breast cancer and its treatment as an exorbitantly expensive undertaking. This finding corroborates an older that has alluded to this (S. V. Wright, 1997). The extent of the costs that are incurred are described in the following extract:

P: I have two children, I buy food, but I need to travel here. When I leave home to go to the hospital in Harding, its twenty-four rand. Right now, it’s late, so I have to stay overnight but when I go home it’s another twenty-four rand. X [Hospital] is better. Here . . . . Think about it, I arrived here [Y hospital] at six. Now we sleep in the wards, but before we slept on the floor. So they would shift some of the patients and we would sleep. Then at three we would wake up and bath. At four the bus leaves and comes here you see?

I: At three? You get up and bath?

P: Or at two. So, we would sleep for a very short time. At quarter to or half past two, you get up, bath and get dressed. You do everything, and you prepare your things. At three you go downstairs and sit at OPG along with many others. They call your names, you get packed lunches and the bus arrives and you go.

I: You get packed lunches?

P: Yes shame, they give them to us

I: Do they come from the hospital?

P: Yes

I: What are those lunches like?

P: Two slices of bread. And an apple. You put it in your bag and go. Then you find a place to sit and eat your lunch.

The extract outlines the factors that contribute to the participant’s perception of her illness as expensive. First, enacting agency by seeking treatment entails deducting funds from the household grocery and child care budget. The particular data point validates the older findings about the costly transport costs that are attached to traveling to health facilities (Dickens et al., 2014; S. V. Wright, 1997). What further increases them is the numerous referrals between various clinics and hospitals. The participant initially traveled to the Harding health facilities as that is where she originates from. This is a rural area that is 383 kilometers (4 hours and 14 minutes) away from central Durban. She was then transferred to X, which is in a different part of Durban and thus requires more transport money. Ultimately she was transferred to the research site, which is located in another part of the city. Her extract indicates that the KZN Department of Health provides transport, lunch, and overnight accommodation. However, this type of support is only extended for the trips to the Durban hospitals. The initial costs that are incurred during the various consultations in rural KZN are incurred by the patients. The National Breast Cancer Prevention and Control Policy (2017) document confirms that the interminable referrals are a challenge and “there should also be engagement with NGOs and government budget to provide navigators to help patients through the referral system” (p. 20). The excerpt also corroborates Dutta’s (2008) observation that communities that are located on the borders of society are subjected to challenges which intensify their experience of disease.

Breast Cancer as a Loss of Femininity

Many of the participants perceived breast cancer as a threat to their femininity. They also communicated their dismay at the hospital’s seemingly apathetic response to their plight:

Our beauty is in our breasts. They must stop playing with us. I’m enraged. I’m full of rage. I’m fed up. I’m fed up for real now. Because if someone tells me . . . they found this thing last year, but it’s been there for a long time. It’s not as if it started lasted year. I’ve had it for a long time and kept coming to them. So, when a person tells me that they can’t operate on it because there’s no space, what am I supposed to do? What am I supposed to do? Wait? If I wait and then they tell me that it’s spread somewhere else?

The excerpt indicates that the participant equates cancer-free breasts with beauty. We can also infer that she perceives diseased breasts as an erasure of her attractiveness and femininity. This association between healthy breasts and feminine wholeness is probably shared by other members of the Zulu, hence the participant’s distress. To some degree, this finding verifies Leclerc-Madlala’s (2001) older assertions about the Zulu community’s phobia of an ailing female body. It has also been highlighted by breast cancer researchers from developed countries (Riba, 2014; Rubin & Tanenbaum, 2011).

Health System Failure

Notably, one participant perceived the hospital and its staff as having delayed her treatment. She sought treatment early, which is the recommended course of action in the regional performance document (Breast Cancer Prevention and Control Policy, 2017). This was done repeatedly, to no avail. The perceived incompetence increased the likelihood of the cancer metastasizing, thus endangering her breasts and possibly her status as an attractive female within her community. Drawing on the culture-centered approach, it is evident that the hospital is a structure that “constrain[s] human action by setting up communicative barriers” (Dutta, 2008, p. 62). In addition, an encounter such as this verifies Lupton’s (1995, p. 158) observations about the communicative power imbalances that are inherent in doctor to patient encounters. These are caused by the doctors’ partiality to a “medical” style of communication, while their patients favor a “lifeworld” one. This means that the doctor focuses on transmitting medical facts about the effects of illness on their bodies. Conversely, the patients are concerned with the impact of the illness on their entire lives. The voices of the patients are instantly subverted because they lack the doctors’ medical education. Consequently, they cannot converse as equals. Notably, the perpetual delays that are cited by participant are valid and recognized in the national breast cancer control policy. This document states that “it is important these are audited to allow for local changes in practice or additional navigation to allow patients to reach appropriate care in timeous fashion” (Breast Cancer Prevention and Control Policy 2017, p. 25). Based on the participant’s data, it appears that this recommendation is not adhered to consistently.

Discussion

Some of the findings corroborate previous research studies about breast cancer survivors. Others are vastly different. However, what makes the insights that were gleaned interesting is that they pertain to underprivileged Zulu breast cancer patients. This group is seldom represented in scholarly works. Therefore, this article contributes to the scarce literature about them. Generally, the participants perceived breast cancer as a disease that was ravaging them from the inside out. The Zulu word for their condition is umdlavuza and merely mentioning it triggered this negative cognitive association. The participants also perceived breast cancer as exorbitantly expensive to treat. Kwa Zulu Natal is a region that is known for its limited resources and even attending to daily basic needs is costly for the average Zulu person. Therefore, a positive breast cancer diagnosis adds to the financial burden. The participants also stated that they perceived this disease as publicly shameful. They expressed their distress at being vilified and treated as outcasts by other community members because of it. Furthermore, they believed that this stigmatizing behavior was unwarranted, as they are not to blame for developing breast cancer. As a result of the mistreatment, some of them were adamant that their condition should remain private until they died. Other participants perceived breast cancer as an erosion of their beauty and femininity. They regarded the poor hospital referral system as a deceleration of the diagnosis process. In this way, it severely curtailed their capacity to prevent the threat to their breasts and their social status as whole women. Notably, it appears that Zulu perceptions of breast cancer are no longer entrenched in spirituality. Biomedical advances are increasingly becoming more influential than Zulu mysticism.

Conclusion

My findings indicate that there is a dire need for breast cancer communication interventions in the Kwa Zulu Natal region. At the least, the existing communication initiatives should be enhanced, because their efficacy is currently questionable. I make this recommendation based on data which demonstrated that the Zulu cultural context is relatively apathetic to the predicament of women with breast cancer. My findings also indicated that this insensitivity may be due to the community’s unfamiliarity with this condition. This lack of awareness causes harsh judgments of the patients. It also creates confusion about whether to opt for traditional healing or biomedical alternatives. If communication practitioners addressed the apparent breast cancer knowledge deficit, it could counteract the Zulu community’s tactlessness. The current adverse perceptions of breast could gradually be eradicated. Importantly, the patients could feel accepted and supported by their fellow community members.

Footnotes

Declaration of Conflicting Interests

The author declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

Funding

The author received no financial support for the research, authorship, and/or publication of this article.

ORCID iD

Duduzile Zwane

Author Biography

Duduzile Zwane is a postdoctoral research fellow at the University of Johannesburg’s Communication Studies Department.

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