Knowledge,misinformation,stigma,and disclosure hesitancy among women receiving curative treatment for cervical cancer at a tertiary hospital in South Africa

Abstract

The high prevalence and burden of cervical cancer in low- and middle-income countries have spurred much research into preventing and screening for the disease. However, little research has focussed on the experience of living with the disease and undergoing treatment in South Africa. Our aim was to explore knowledge, misinformation, stigma, and disclosure hesitancy among women receiving curative treatment for cervical cancer at a tertiary hospital in South Africa. We conducted semistructured interviews with 15 women who completed curative treatment for cervical cancer at an academic hospital in South Africa. Interviews were audio-recorded, transcribed, and analysed using thematic analysis. In this article, we describe participants’ knowledge and understanding of cervical cancer, their experience of misinformation and stigma and hesitancy to disclose their illness to others. Participants reported little knowledge about cervical cancer. They reported many sources of misinformation, such as family members and even medical professionals, which at times contributed to delays in seeking diagnosis and treatment. Furthermore, participants reported feeling stigma associated with their diagnosis. We highlight the central role that communication can play in increasing knowledge, reducing stigma and misinformation, and facilitating disclosure among women with cervical cancer. We include recommendations for health care practitioners and researchers.

Cervical cancer is the second most commonly occurring cancer diagnosed in women in South Africa (SA) (Sabulei & Maree, 2019; World Health Organization, 2019). Studies in SA indicate that women report poor knowledge about cervical cancer (De Abreu et al., 2013; Hoque & Hoque, 2009; Maree & Wright, 2010; Mosavel et al., 2009). For example, a survey among 532 women in a rural setting in SA found that participants were unaware of the risk factors and symptoms of cervical cancer (De Kubber et al., 2011). Similarly, focus groups conducted among 21 women from informal settlements in SA identified the lack of knowledge regarding screening for cervical cancer as a key barrier to treatment (De Abreu et al., 2013). However, knowledge of cervical cancer and cervical cancer screening among HIV positive women attending a health care centre in Johannesburg, SA was higher, with 79% reporting that they had heard about cervical cancer and 63% being able to identify the purpose of a pap smear (Maree & Moitse, 2014). The difference in knowledge between these samples may be due to sample differences, with the former two samples recruited from a community and the latter recruited at a health care facility where they would have had access to information from health care providers. Lack of knowledge of cervical cancer is not limited to women in SA as studies in Tanzania (Weng et al., 2020), Saudi Arabia (Jradi & Bawazir, 2019), and China (Yuanyue et al., 2018) also indicate poor knowledge of cervical cancer.

Accurate information about cervical cancer prevention and treatment must be accessible and suitable to specific target populations (Mosavel et al., 2009; Pillay, 2002). The choice of wording must be appropriate for effective messaging. For example, researchers conducting a study in South African found that women were not familiar with the word ‘cervix’ and therefore struggled with the concept ‘cervical cancer’ (Mosavel et al., 2009).

Misinformation is another factor identified in research contributing the knowledge gaps regarding cervical cancer. Researchers conducting a study in Zambia found that participants attributed cervical cancer to factors such as bewitchment, oral contraceptive use, or as divine punishment (Chirwa et al., 2010). Myths and beliefs such as these may negatively impact treatment adherence (Learmonth et al., 2015) and attitudes towards the disease (Mosavel et al., 2010) were associated with stigma (Chirwa et al., 2010).

Sources of information about cervical cancer should be reliable, considering the ramifications of misinformation. Community members play an influential role in shaping attitudes and beliefs about cervical cancer (Maree & Wright, 2010; Mosavel et al., 2009). Research among university students found that students relied on community health workers, health care providers, the media, and peers for information about cervical cancer (Hoque & Hoque, 2009). In the study conducted among HIV positive women reported earlier, participants identified doctors and nurses as their primary source of information about cervical cancer (Maree & Moitse, 2014). A study among 900 women in Uganda found that 82% reported that they had heard of cervical cancer. Most of these women stated that the radio was their primary source of information (Mukama et al., 2017). These studies indicate that there may be multiple sources of information, but that access to these differs among populations.

Stigma is another factor that influences patient experiences and willingness to test for the disease. Cervical cancer’s association with the Human papillomavirus (HPV) results in stigma against women with the disease (Shepherd & Gerend, 2013). The stigma associated with cervical cancer can impact health-seeking behaviour and adherence to treatment and may play a role in potentially diminishing social support for women with cervical cancer (Maree et al., 2014; Nyblade et al., 2017). In a study among 153 women diagnosed with cervical cancer, researchers concluded that cervical cancer symptoms and stigma contributed to social isolation (Sabulei & Maree, 2019). Stigma and misconceptions around cervical cancer can be reduced by the dissemination of accurate information via health care providers and social networks within communities (Momberg et al., 2017).

In this article, we report on the knowledge, misinformation, stigma, and disclosure hesitancy among women receiving curative treatment for cervical cancer at a tertiary hospital in Cape Town.

Method

Participants

Participants were recruited from the Radiation Oncology department of the largest hospital in the Western Cape. The department receives patient referrals from clinics and hospitals in the surrounding areas. Patients are mostly Afrikaans-speaking, which reflects the predominant language spoken in the Western Cape.

Participants between the ages of 28 and 49 years. The majority were unmarried (n = 9), Four were married, and two were widowed. Most had biological children (n = 13). The highest level of education varied among participants, with nine reporting that they completed high school and six reporting that they did not complete high school. Nine participants stated that they were employed and six stated that they were unemployed at the time of the study. Household incomes varied among participants, with eight participants reporting a household income of less than R5000 a month and six disclosing that their household income was greater than R10 000 a month. One participant did not disclose her income.

Data were collected with semistructured interviews among women receiving curative treatment for cervical cancer at an academic hospital in SA. Participants were recruited using purposive sampling. Inclusion criteria included being between the ages of 18 and 50 years and having undergone curative treatment for invasive cervical cancer, which resolved no more than 18 months prior to interviewing.

Instruments

Demographic questionnaire

Participants completed a demographic questionnaire by reporting information such as their age, marital status, highest education, living situation, and work situation.

Interview schedule

We used an interview schedule to explore participants’ psychosocial experiences of cancer diagnosis and treatment. Examples of questions were: ‘Please describe what you knew about cervical cancer before you were diagnosed’, ‘Can you describe what you were thinking when you were diagnosed?’, ‘What did you feel when you were diagnosed?’ and ‘Please describe the treatment you received’.

Procedure

Staff assisted with participant recruitment by informing the data collector of which patients met the criteria for inclusion. The data collector approached these women in the waiting room individually and invited them to a private consultation room where she explained the study to them. Interviews were scheduled with those who were interested in participating in the study at a time and place that was convenient for them.

Participants were interviewed either in a private consultation room at the hospital or their homes. Interviews were conducted in English or Afrikaans as there was no funding for translators. Participants who were not able to converse in either language were excluded from the study. Interviews lasted between 20 and 70 min. Interviews were audio recorded and participants received reimbursement for travel and a shopping voucher as a token of appreciation for their participation.

Ethical considerations

This study was approved by the Health Research Ethics Committee of Stellenbosch University and permission to access patients at the hospital was granted by the relevant health authority. Participants were informed that participation was voluntary and that the research was independent of their treatment at the hospital. Pseudonyms are used when reporting any data. All participants provided written informed consent. Participants were also provided with free psychosocial support if they indicated a need. All data will be destroyed 5 years after completion of the study.

Data analysis

Recorded interviews were transcribed, and Atlas.ti software was used to manage the qualitative data. We used the guidelines for conducting thematic analysis from Braun and Clarke to analyse the data and search for themes (Braun & Clarke, 2006, 2019). This included familiarising ourselves with the data, coding and code refinement, and developing themes.

Results

We present our findings as four themes namely knowledge and understanding of cervical cancer, misinformation, stigma, and disclosure hesitancy.

Knowledge and understanding of cervical cancer

Most participants reported that they knew little about cervical cancer, its causes, symptoms, diagnosis, and treatment. Many reported that they knew of cancer in general or were familiar with breast or ‘womb’ cancer, but not cervical cancer. Few participants reported that they had heard of the term ‘cervical cancer’ but did not know anything else about the disease. Eva described how she only knew of cancer in the broadest sense:

In fact, I didn’t know anything, I just knew cancer was cancer I didn’t even know there were different types of cancer . . . to me, cancer was cancer and, to me, it was like a big story because, obviously when you hear that cancer name, then you think you’re dying. (translated from Afrikaans)

In the above statement, Eva reflects on strongly associating cancer with death. This was an association made by all participants and was central to their experience as participants reported that this belief was prominent in their communities. Associating cancer with death therefore played a prominent role in shaping their cancer experiences.

Much of the knowledge that women reported to have known about cancer was based on experiences of family members who had cancer. Participants reported that they heard of pap smears but could not describe what pap smears were used for, indicating little knowledge of cervical cancer screening. This lack of understanding of the purpose of pap smears could be a barrier to disease screening.

In addition, most participants attributed their cervical cancer to genetic factors with some stating that they thought that cancer was inevitable for them. Other causes of cancer among participants related to behaviours such as smoking or sexual activity, perhaps due to associating the cervix with female sexual organs but none reported knowledge of HPV.

Interestingly, three participants stated that they did not want to know about the disease because knowing too much made them feel anxious. For example, Nina provided the following rationale for her approach:

Yeah I know a little bit about what’s going on and stuff . . . don’t want to chase too many ghosts because I feel it makes you more paranoid and stuff, I just want to know enough that I know what the situation is about and, a be a little open minded that it will not be cured overnight and stuff. (translated from Afrikaans)

Most participants indicated that more knowledge made them feel empowered and less fearful of their treatment prospects. Women stated that they wanted more information about cervical cancer and were interested in how to prevent recurrence of the disease. Some participants reported that they sought information to improve their lifestyles at home from online resources during treatment. Here they found information of diet and exercise. Women also reported that they desired knowledge about cervical cancer so that they could inform their children and hopefully prevent them from contracting the disease. In the following statement, Sandra describes how Facebook became an important source of information for her:

They (medical staff) never told me for example, what I just saw on Facebook. They (Facebook) say you should try to avoid sweets and that type of stuff. They (medical staff) didn’t tell me anything like that. They (medical staff) didn’t tell me the, the, things of ‘don’t eat and drink that, don’t do that, don’t do that, it makes cancer even faster.’

Although women in this study knew very little about cervical cancer, most desired to know more to care for themselves and prevent their family members from contracting the disease. However, a few participants felt safer not having too much information.

Misinformation

Participants stated that cervical cancer was not a topic spoken about within their families and communities. This meant that there was little information shared about cervical cancer. Despite this, women reported that they encountered some misinformation and that in some cases this led to delays in seeking a diagnosis. Sources of misinformation included family members, community leaders, online information, and health care professionals. For example, Nobomi consulted online sources when she experienced heavy bleeding and pain for more than 12 months. The online information seemed to indicate that her contraceptive could be the cause of her symptoms, resulting in a further delay of almost another year before she sought medical attention for a diagnosis.

Two other participants, Felicia and Fundiswa, reported receiving misleading information, this time from health care professionals after they screened positive for cervical cancer. Felicia reported that she felt distressed when a health care professional informed her that a diagnosis of stage III cervical cancer was not treatable, even though her cervical cancer was not yet staged at the time. Fundiswa was told by health care professionals that cervical cancer could be attributed to abortion. This type of information may act to propagate stigma around a disease that is not openly discussed. In the following statement, Fundiswa described her experience with the health care professional:

They were talking about consequences of doing abortion, they said it could lead you to cancer.

Participants stated that they felt strongly about sharing accurate information about cervical cancer with others, especially their daughters. Women stated that they were keen to raise awareness of cervical cancer, particularly the symptoms and screening practices to dispel misinformation. There was a sense among participants that sharing their experiences would also reduce stigma about the disease within their communities. In the following statement, Elsabe described feeling empowered as she learned more about the disease during her treatment:

I feel I got enough . . . I can talk about myself now, and I can talk about my experience and everything and I can maybe, give a little more information if they don’t know now because I know more now. (translated from Afrikaans)

Stigma

Participants initially reported that they did not know much about cervical cancer or perceptions about the disease prior to diagnosis but as interviews progressed, they shared their experiences of stigma. One prominent negative perception that they encountered was the association of cervical cancer with promiscuity. For example, cervical cancer was referred to as a ‘skande’ (translated: scandal) by Anna, a single mother. Nobomi described her friend’s reaction to her diagnosis in the following quotation that highlights this stigmatising idea:

She asked what cancer I have . . . so I said cervical. So, she was like, it can only mean you were sleeping around. You know . . . And then I really believed that, I really did believe that maybe I had slept with the wrong people in my past.

Other participants reported similar experiences and were disappointed that in many cases those close to them held these beliefs, leading them to experience feelings of shame and isolation. These feelings resulted in women reporting that they hid their diagnosis from people to avoid feeling judged by others.

Another prevalent stigmatising idea was the notion that cervical cancer was contagious, and this idea led to women reducing their contact with other people. Women reported that they experienced shame and fear because of this idea and that limiting their social circles during treatment meant that they received little social support and contributed to feelings of isolation. In the following interview extract, Maria described the impact of perceiving cervical cancer as a contagious disease:

I thought, oh, I’m not going to have any friends anymore, and so, because it’s sickness, and for me it was almost like, now it’s a contagious disease that I have and hmm. I thought about all these things because I, I was embarrassed because, it almost felt like it was a contagious disease. (translated from Afrikaans)

Disease stigma may have led to women experiencing feelings of shame and secrecy around their diagnosis and therefore increased feelings of isolation and non-support. The limited knowledge that participants had about cervical cancer may have fuelled these stigmatising ideas, as they were not confident to speak about their experience with others.

Disclosure hesitancy

Overall, participants seemed hesitant to disclose their diagnosis. Once again, this could be attributed to the lack of knowledge about cervical cancer, both among patients and people who they interacted with.

Only three participants reported that they felt comfortable disclosing their diagnosis to others. These participants may have been less concerned about others’ opinions and did not experience shame and stigma in relation to their diagnosis. A common theme among these participants is that they attributed their cancer diagnosis to an external source and viewed themselves as having very little control over the disease. For example, Maria accepted her cancer and attributed it to an external source:

It’s a God-sickness, I can’t help it crossed my path. (translated)

Those who stated that they felt comfortable disclosing their diagnosis to others also shared that they felt a responsibility to create awareness about the disease and educate others.

However, most participants reported that their feelings of shame and their fear of being judged by others led them to conceal their diagnosis from others. While these women felt comfortable in disclosing their diagnosis to their partners, they struggled to decide who else to disclose their diagnosis to. Participants reported that when they disclosed their illness to others, they felt relieved and supported. For example, in the following interview extract, Tasha described her hesitancy to disclose her diagnosis:

I didn’t want to [disclose] . . . because many people have this notion in the head that okay, if you do have cancer, you’re going to die. The same as me, same as what I thought. So, I didn’t want that, you know, so I just kept it to myself and, yeah.

Women reported that they were concerned about how others would react to their diagnosis and had no control over others’ reactions. This uncertainty played a role in their disclosure hesitancy.

Some participants who were employed reported that they felt as though they did not have the option to keep their diagnosis from their work colleagues. Many considered their diagnosis as a private matter but were forced to disclose some details of their illness at work due to the impact of their treatment on their physical health and an increase in work absenteeism. Eva described her experience at work in the following statement:

Sometimes you don’t know how to talk to your work people . . . all your illness secrets. You don’t know how people are going to act towards you . . . and then she [manager] asked me why I didn’t tell her? Then I said I just didn’t think it would get to that point [where she had to disclose] because I just felt, my privacy and my illnesses are my illnesses, my business is not anyone else’s. (translated from Afrikaans)

Fortunately, Eva’s disclosure resulted in increased social support from her employer and was therefore beneficial.

Some participants reported that they had young children and that they kept their diagnosis a secret from these children because they did not want their children to worry. This action was underpinned by the association of cancer with death. Some of these women stated that they thought that their children were too young to understand the disease and its treatment. Those who disclosed their diagnosis to their children reported that their children reacted with fear and confusion and were worried about losing their mothers to cancer. Children’s age seemed to impact their reaction to their mother’s diagnosis. For example, Elsabe revealed that her younger child did not understand and did not seem concerned, whereas her older son (7 years old) was curious and asked many questions:

He asked, ‘what is cancer?’ I don’t think he had a clue what it is . . . My cousin explained to him that it’s just where you get sick and then you have to go to the hospital to get healthy. . . she did not go into details . . . and obviously he would not have understood. (translated from Afrikaans)

Participants who were single parents did not want to share their diagnosis with their children. Although women were hesitant to disclose their diagnosis to their children at the time of being interviewed, many stated that they felt that it was important to share their diagnosis with their children at some point in the future and to educate their children about cervical cancer.

Discussion

Participants in this study reported that they did not have much knowledge about cervical cancer, encountered misinformation and stigma about the disease, and were hesitant to disclose their diagnosis with others.

Knowledge about a disease can play an important role in patient behaviour, as it may prompt health-seeking behaviour (such as regular screening; see Shneyderman et al., 2016), improve adherence to treatment (Jankowska-Polańska et al., 2016), and help patients to cope with their illness. Searching for information about a disease is considered a form of active coping (Carver & Scheier, 1994). Most participants in the present study indicated that they wanted to know more about their cancer, but a few participants stated that knowing too much about their cancer made them anxious. The factors underlying the belief that too much information leads to anxiety should be explored in future research, as evidence suggests that there is no relationship between online health-seeking behaviour and anxiety in patients diagnosed with colorectal cancer (De Looper et al., 2021).

The finding that information needs vary is similar to that of a study conducted among cancer patients in the United Kingdom, where all patients wanted basic information on diagnosis and treatment, but only some wanted additional information at all stages of their illness (Leydon et al., 2000). Furthermore, some participants stated that they actively avoided new information and cited their faith in their doctors’ expertise, and limited knowledge about cancer and medicine as reasons for their avoidance (Leydon et al., 2000). The finding that information needs vary between patients can be challenging to health care providers working with cancer patients. More research is needed to understand factors driving variation in information needs among cancer patients to assist health care providers with delivering tailored information that match patient needs. However, until we have this information, we recommend that health care providers enquire from patients about their information needs and adjust the information they share with patients according to the individual patient.

The lack of understanding of cervical cancer was evident when participants reported limited to no understanding of the disease. For many, the diagnosis was associated with death, and this was a central part of their patient experience. Participants seemed to know of cancer in general, but not cervical cancer. Most of the participants attributed their cancer to genetic factors, and none of the participants reported any knowledge of HPV. This is aligned with the findings of a quantitative study conducted in North West Ethiopia, which found that more than 80% of women surveyed did not know that HPV caused cervical cancer (Mengesha et al., 2020). Although the current study sample was small, the lack of knowledge was similar to those reported in larger studies in SA (De Abreu et al., 2013; De Kubber et al., 2011) and globally (Jradi & Bawazir, 2019; Weng et al., 2020; Yuanyue et al., 2018). Participants did not attribute their disease to bewitchment, oral contraceptive use or divine punishment (Chirwa et al., 2010).

Considering that participants reported no knowledge of HPV and many reported that they did not know what pap smears were for, it is evident that information about these factors have either not been communicated to patients or have not been successfully communicated. This indicates a failure in cervical cancer education at the community and primary health care levels, which had far reaching consequences for these participants. Other researchers have stated the importance of suitable and accessible information on cervical cancer, its diagnosis and treatment (Mosavel et al., 2009; Pillay, 2002), and this finding in our study reiterates this need for accessible information to improve knowledge about the disease.

The participants in the current study reported that family, community members, online resources, and health care professionals were important sources of information about cervical cancer to them, and these sources of information are congruent with other studies (Hoque & Hoque, 2009; Mukama et al., 2017; Maree & Moitse, 2014; Maree & Wright, 2010; Mosavel et al., 2009). However, participants also stated that some of these sources provided misinformation about the disease. Participants’ accounts of health care workers providing incorrect and sometimes stigmatising information are disturbing and indicate that health care workers may need to be educated about cervical cancer, as their misconceptions about the disease may filter down into the communities where they reside and work as they occupy positions of authority within these communities. This may perpetuate stigma about cervical cancer.

Participants reported experiences of stigma, which is consistent with findings on other studies among women with cervical cancer (Chirwa et al., 2010; De Abreu et al., 2013; Learmonth et al., 2015). Women reported that they felt shame and were confused when confronted with stigmatising ideas. A unique finding in this study was that some women reported that they were concerned about infecting others with the disease and therefore isolated themselves. In this case, they were not referring to infecting others by sexual contact, but rather by being in close proximity to others. This belief shows the urgent need to correct information about the disease. Both the stigma about the sexual nature of contracting cervical cancer and the strong association between death and cancer resulted in women reporting that they were hesitant to disclose their diagnosis to others. This hesitancy to disclose their diagnosis can be contributed to perceptions and attitudes of community members towards the disease (Leser & Francis, 2014). Attitudes and beliefs regarding cervical cancer were often culturally bound within women’s communities and shaped the way that women perceived themselves (Learmonth et al., 2015; Maree & Wright, 2010; Maree et al., 2014; Mosavel et al., 2010). Stigma may therefore be dependent on the environment women find themselves in and can lead to non-disclosure and isolation (Sabulei & Maree, 2019). However, disclosure of the disease may lead to improved emotional support in women with cervical cancer (Carpenter et al., 2010) and can therefore be beneficial to patients.

Women wanted to protect their children from their experiences of the disease and wanted to educate their children so that they do not contract the disease in future. However, some women with younger children kept their diagnosis from their children, to not provoke anxiety in their children. The prevalent association between cancer and death may have resulted in distress in children, and non-disclosure in these instances was meant to shield children.

Communication seems to be an underlying factor in this study. We found that women knew very little about cervical cancer, were misinformed about the disease, and experienced stigma due to erroneous beliefs held by people within their social circles. The silences surrounding cervical cancer may have a large role to play in these experiences. Therefore, communication of accurate and accessible information about cervical cancer is urgently required within communities, health settings, and educational settings. Accurate information can not only reduce stigma experienced by women with cervical cancer and result in greater social support and less distress (Carpenter et al., 2010), but can also lead to earlier diagnosis and better health outcomes.

The lack of knowledge about cervical cancer that participants reported indicates the urgent need to communicate information about the disease, its aetiology, diagnosis, and treatment among women in SA, and specifically, those seeking treatment in the vicinity of the hospital where this research was conducted. Campaigns providing accessible information based in communities and health care settings can play a role in improving knowledge within communities. Further research should be conducted into the stigma around cervical cancer, and interventions should be developed to combat cervical cancer stigma.

We also found that stigma and gaps in knowledge about the disease were perpetuated by health care workers. Therefore, health care workers should receive training about the disease to challenge these existing stigmatising beliefs.

There were several limitations to this study such as the use of convenience sampling, which may have impacted our results. Interviews were only conducted in two languages, meaning that those who were not comfortable speaking English or Afrikaans were excluded. However, it must be noted that no patients were refused participation based on language. Finally, the research was conducted at a public, tertiary hospital and findings do not represent experiences at other facilities in the country.

Conclusion

The women receiving curative treatment for cervical cancer who were interviewed in this study reported that while they had heard about cancer, they had little knowledge about cervical cancer prior to their diagnosis. Moreover, information needs varied among participants. Women also reported that they received misinformation from people they knew, including medical professionals which in some cases resulted in delays in seeking a diagnosis. It is therefore evident that there is a need for campaigns to educate the public and health care professionals about cervical cancer. Finally, some participants reported that they were hesitant to disclose their illness to other, due to stigma around the disease but also out of concern for those closest to them.