Thirty-one eligible women were recruited, 4 declined to participate and 9 did not arrive for their scheduled interview. In total we interviewed 18 women, 4 with breast and 4 with cervical symptoms in the rural site, and 6 with breast and 4 with cervical symptoms in the urban site – with only 3 participants in the urban site reporting both breast and cervical symptoms.
Participant characteristics
The median age for women (n=18) was 34.5 years (range 22-58). The majority (n=14) women were unemployed and had either primary or secondary education (only 3 had completed high school). Five women were HIV positive with one woman unaware of her HIV status. Five women were married, 9 were single and 4 separated, divorced or widowed. The majority (16/18) of women had more than one child (see Table 1).
Table 1: Participant demographics n=18
%
|
Age (years)
|
Mean=36.8 (SD=11.1)
|
Median=34.5 (IQR=18)
|
Educational level
|
None
|
1
|
6
|
Primary
|
6
|
33
|
Secondary
|
8
|
44
|
Matric (Grade 12)
|
2
|
11
|
Post matric
|
1
|
6
|
Employment
|
Unemployed
|
14
|
78
|
Employed
|
4
|
22
|
Relationship status
|
Married
|
5
|
28
|
Single
|
9
|
50
|
Separated/divorced/ widowed
|
4
|
22
|
Number of children
|
0
|
2
|
11
|
1-3
|
8
|
44
|
4-8
|
8
|
44
|
HIV status
|
Positive
|
5
|
29
|
Negative
|
12
|
71
|
Unknown
|
1
|
Six broad themes were identified: 1) Perception and impact of bodily changes; 2) attribution of bodily changes; 3) influence of social networks in help-seeking; 4) health messaging; 5) management of bodily changes and 6) barriers to help-seeking. The process of symptom appraisal, attribution, management and help-seeking did not occur in a linear manner, the above-mentioned themes overlapped over the appraisal, symptom attribution and help- seeking process. An iterative process was identified during the symptom appraisal process which included initial symptom recognition, attribution of symptoms, discussing and seeking advice from social networks including family and friends, and perceived risk of breast or cervical cancer. The quotes from the transcribed interview data were chosen to represent and validate the key issues and themes that emerged and to demonstrate a range of participants’ views. All illustrative quotes are provided with age ranges to avoid potentially identifying information.
- Perception and impact of bodily changes
Perception of breast changes included feeling and seeing a breast lump, noting the absence or presence of pain, and visible changes to breast skin and nipples. Some symptoms were intermittent, and women recounted how they initially monitored and evaluated their symptoms prior to seeking help. If symptoms were not persistent women would often wait to see whether symptoms subsided. An older woman described intermittent and changing breast symptoms.
I noticed a lump under my breast, but it disappeared, but then I got other lumps here in my neck, and then they disappeared again. And then my breast started aching, and itch and throbThese things are not treating me well, they come, and they go. I get these lumps and then they disappear again. [rural, age 50-59, breast symptoms]
The following extract suggests how some women noticed their bodily changes and sought explanations for possible causes, in this case, underarm deodorant.
Well, it’s not painful and I noticed it after I had finished shaving my armpits. I noticed the lump. I thought that it’s an abscess, so now I can see, it’s not an abscess; because I can see that it’s not ripening… So, for now I’ve let it be, maybe it’s the roll-on that I was using… [age 20-29, urban, breast symptoms].
In contrast to breast symptom appraisal most women with vaginal symptoms expressed more of a sense of urgency in seeking care, often linked to more obvious, unpleasant and embarrassing symptoms such as odour, bleeding and other aspects of intimate personal hygiene. The impact of cervical symptoms such as smelly vaginal discharge, and bleeding, impacted on women’s daily lives and interpersonal and sexual relations.
A woman with a vaginal discharge, pain and bleeding recounted the impact of her symptoms on sexual relations and when the symptoms did not dissipate, realised she had a problem but was unsure of the cause of her symptoms.
The symptoms, they shocked me because it was my first time encountering them. … I even told my partner that “I have this problem and I want us to stop having sexual intercourse because I’m scared.” And when this blood starts coming out after we have done these adult things, [referring to sexual intercourse]. Then the blood starts flowing heavily, it becomes painful … when it happened for the first time, I thought that he was overpowering me, but as time goes on, I see that is not the case… I have a problem, but I don’t know what the problem is. [age 30-39, urban, cervical symptoms]
- Attribution of bodily changes
Breast symptoms
Breast changes were often attributed to a range of daily activities such as manual labour, wearing tight undergarments, and cancer due to placing money in one’s breast. Attributing a breast lump to a breast abscess was also reported by women.
Daily activities
A woman residing in a rural area attributed lumps under her arm and breast to heavy manual labour.
I didn’t take much note, I didn’t think about what was causing them [lumps in breast and armpit] because I thought that it might be because of gathering firewood, so I thought that it’s because of the heavy loads we carry. [age 50-59, rural, breast symptoms
Wearing tight undergarments was attributed to breast changes.
My nipple has always been like that, but I thought that it’s because of wearing a tight bra, so I thought that it is squashed. But it is itchy and when it’s itchy it ends up becoming red over here and then I get those fine pimples – they look like blisters. [age 30-39, urban, breast and cervical symptoms]
Cancer
Some women in urban areas held beliefs that placing unwrapped money in one’s bra and thus in direct contact with breast skin could cause breast cancer. A woman explained:
Anything that is in the breast is usually cancer, so I was afraid that they might say I have cancer….The thing is I like putting money in my breasts and my mom reprimands me and says that I must wrap the money before I put it in my breasts because it causes cancer. [age 20-29, urban, breast symptoms]
A 33-year-old pregnant HIV positive woman was concerned on discovering an unexpected breast lump associating it with possible breast cancer and sought help.
I just felt the lump out of the blue, I was worried thinking that what if I have this thing, they call cancer. I went to the clinic… I thought that I should report this at the clinic, because I don’t know how it’s going to go away. [age 30-39, rural, breast symptoms]
Breast abscess
Breast lumps were attributed to a breast abscess by most women residing in the urban areas. Women recounted how they initially assumed a breast lump with associated pain was a possible abscess. However, when changes did not fit into their understanding of an abscess (ripening and ability to drain pus) they reassessed and decided to seek help.
With the lump in my breast I first thought that it is an abscess, but I was confused because it didn’t become ripe so that I would be able to pop it. You know what an abscess looks like when it is ripe, you can pop it. So, I was wondering why it isn’t becoming ripe. [age 30-39, urban, breast and cervical symptoms].
Cervical symptoms
Some women attributed their cervical symptoms to a possible cervical cancer, sexually transmitted infections (STIs) and, in some instances, vaginal bleeding was associated with the use of long acting hormonal contraception.
Cancer
Despite framing the interviews within the context of general questions around breast and cervical symptoms, more than half of the women spontaneously linked their symptoms to possible breast or cervical cancer. The fear of cancer was not only a trigger to accessing care, some women also highlighted the importance of early detection and treatment.
Perceived personal risk of cancer, heightened by HIV status, played a key role in the appraisal of cervical symptoms and most participants attributed their symptoms to a possible cancer. A young HIV positive woman with both breast and cervical symptoms was afraid her symptoms could be attributed to cancer underscored by smoking as a possible risk factor.
I thought that it might be cancer, or it might not be. But most of the time it can be cancer because I know cancer and I can contract it easily because I smoke.... It [HIV] does affect it because I’m always thinking maybe it’s cancer, how can I have two things at the same time. [age 30-39, urban, breast and cervical symptoms]
An HIV positive woman thought it was important to have a Pap smear and highlighted the importance of early detection.
Because since I’m not healthy down there, and I’m always wet it might be cancer, it might be cervical cancer, so I thought it’s better to get a Pap smear… because if it’s cancer … at least if they detect it early, that is why I ended up going to the clinic. [age 30-39, urban, breast and cervical symptoms]
Sexually transmitted infections
An HIV positive woman with vaginal bleeding thought her vaginal discharge suggestive of a STI could be attributed to her partner’s infidelity.
I thought that my partner was sleeping around, when it first started happening... so, I told myself that he is the cause because he is the only person I am with. And most of the time he is not around, like he travels for work and then he comes back on weekends. [age 30-39, urban, cervical symptoms]
Hormonal contraception
Changes in bleeding patterns such as intermittent or persistent bleeding were sometimes associated with the use of past or current use of long acting hormonal contraception. A woman attributed her continual bleeding to the sub-dermal contraceptive implant.
I mean that after I’ve been on my periods, I would continue to bleed, so it’s still happening [since receiving implant] Yes I’ve spoken to the nurse, [ re complaints around bleeding] when I was speaking to her I said that I would like to have the implant out…, because this thing [implant] makes me go on my periods continuously. [age 30-39, urban, breast and cervical symptoms]
- Influence of social networks in help- seeking
Social networks played an important role in terms of symptom interpretation and prompts to help- seeking. Overall, most women discussed their symptoms at some point with social networks whether informally or in seeking advice and were encouraged to access a health care facility. Some women with more intimate symptoms were more guarded in discussing their symptoms for fear of stigma and breach of confidentiality. However, for some discussing bodily changes with close confidants was preferable.
Some people think that you are out there [you sleep around], or maybe that you have many partners… That is what they say, or that you contracted something from the men you slept with. I only discuss it with my mother and my sister. So, I don’t go outside where it seems like I’m not okay, so I just share it at home, yes with the people I live with. [age 30-39, rural, cervical symptoms].
Despite some women’s reticence discussing their symptoms for fear of “community gossip” most women did seek advice from those close to them who suggested they access care. A woman discussed her symptoms with her partner who suggested she access a health care facility where she could be further investigated.
The only person I told about my lower region is my boyfriend. … My boyfriend said that I should go to the clinic because what if there is some damage in my womb, so I went to the clinic. And then he asked me if I had done a Pap smear, I told him yes and then he asked me what the results were, I told him that they were clear. [age 30-39, urban, breast and cervical symptoms]
- Health messaging
Health information around breast and cervical cancer symptoms influenced symptom appraisal and attribution but were also triggers to seeking care as women reflected on what they had gleaned via social media (radio) or at primary care facilities and often linked their symptoms to a possible cancer.
A woman who attributed a breast lump to a possible cancer stressed the importance of seeking prompt help further influenced by health information obtained at clinics.
… I noticed the breast lump; and because at the clinic they said that, “If you notice a strange lump in your breast, come to us with it so that we can check it.” I rushed to the clinic to have the lump checked out, and then they found out that it’s just a normal lump and that it’s nothing serious [age 30-39, urban, breast and cervical symptoms]
Similarly, women residing in rural areas were prompted to seek help through information received via the radio suggesting the important role played by radio in raising health awareness.
I listen to the radio, and they speak about cancer on the radio, so when I’m listening in, I realize that no man this might be it…They say breast cancer everyone should see a doctor, to check their breasts. When you feel a lump in your breast go to the clinic as soon as possible, so that you can see a doctor, so I listen to that… As soon I discovered them, these ladies [ recruitment team] showed up at my house, I then registered with them. [age 50-59, rural, breast symptoms]
A few women suggested how health care messaging could be improved at health care facilities with less focus on infectious diseases and more on cancer prevention messaging.
If they were to explain the signs to you at the clinic, you would attend to them very quickly. But what they talk about at the clinic is HIV and other STIs that is all they preach about. They won’t talk about the mouth of the cervix and everything around it… And then that is where we won’t know the symptoms. You might notice your symptoms long after you have been infected, whereas there was something that you could have prevented. [age 30-39, urban, cervical symptoms]
This was also echoed by another participant who reported that health care providers tended to focus on infectious diseases and less on cancer.
We haven’t been taught much about cancer at the clinic, we’ve been taught about HIV and TB. [age 30-39, rural, cervical symptoms]
- Management of bodily changes
Self- management
Most women with breast symptoms reported pain as something unexpected or perceived as abnormal and initially monitored their symptoms or self-treated with pain medication or home- based remedies. However, if symptoms did not resolve they decided to seek help.
A woman who had a prior breast lump initially monitored her symptoms based on prior symptoms and self-treated for pain prior to accessing help.
It all started like a flu … and then I saw it I was like a lump. While I was monitoring that, I didn’t really give it much attention, now that it has started aching, I was reminded that this breast had a lump before... It got better, and the lump disappeared. Now I can feel that it is starting to become painful again and even I go to buy pain tablets, it only stops the pain for a short while.” I even rubbed it down with saltwater … it felt better but now it’s getting worse. [age 30-39, rural, breast symptoms].
Traditional medicine
We explored whether women had accessed other health care modalities to manage their symptoms. Most participants were sceptical about traditional healers, including their ability to treat their symptoms, for a range of reasons, including their ability to replace conventional allopathic medicine for the treatment of both cancer and HIV/AIDs. Prior experiences with traditional medicine, whether directly or through other’s experiences, further informed their decisions not to seek help from traditional healers.
An HIV positive woman stated that she would not access a traditional healer for her symptoms especially as she was on antiretrovirals (ARVs) and would only access a “qualified doctor” who was trained to understand her health conditions.
A Sangoma [ traditional healer] will lie to me and will give me muthi [traditional medicine], that muthi cause my CD4 count to go down and when your CD4 count is down that is when I die…I don’t want to go to places where that person is not a qualified doctor and he is not certified. [age 30-39, urban, cervical symptoms]
The issue around the efficacy of traditional medicines was further supported by a traditional healer study participant who expanded on the role of traditional medicines in less serious health conditions.
We grew up on them [herbs], they say it’s meant to clean your womb, and to help you when the issue isn’t that serious; because there are some illnesses that we can’t heal, that need a doctor’s attention. And they also taught us at the initiation school that a person should go to a doctor first before you give me them any herbs. [age 50-59, rural, cervical symptoms]
- Barriers to help-seeking
Women reported barriers to seeking health care, ranging from difficulties with social circumstances and accessing care to negative experiences while seeking care at health care facilities.
Social circumstances
Rural women experienced several challenges in accessing care including home care commitments, physical access, personal safety and financial constraints.
An older woman residing in a rural area recounted the dire social circumstances that made it difficult for her to take off time to seek assistance for her symptoms.
My cousin said to me… “Get yourself checked out …and then I said, “Cousin it’s difficult to get myself checked … who is going to gather firewood for me, I don’t have a stove and I don’t have electricity,” … I must gather firewood so that I can have some money and sell it. [age 50-59, rural, breast symptoms]
Transport and access issues
Women residing in the rural areas recounted more transport and facility access issues compared to women located in the urban areas. In rural areas access to health care facilities were inhibited by distance, lack of transport and cost. Whereas, urban women were in closer proximity to health care facilities.
An older rural woman described difficulties accessing the clinic located two hours walking distance away compounded by having to traverse dangerous terrain. These barriers prevented her from seeking care.
There’s no transport that goes there. You must walk there ... and we must cross Makwa River and walk through fields to get there. … and then you hear people saying, “So and so got robbed,” so we are always afraid. [age 50-59, rural, cervical symptoms]
Experiences at health care facilities
Once at health care facilities some women recounted negative experiences which included limited information and counselling, long wait times, shortage of trained staff and judgemental attitudes from clinic staff. However, negative experiences were not uniform and some women, predominantly with breast symptoms, recounted more positive experiences and were satisfied with the treatment and care received.
A woman recounted how she was sent from “pillar to post” and was dissatisfied with the treatment and vowed not to return.
I came here, and they told me that nonsense, I was in so much pain, and that is what they told me. At that point I only wanted pain tablets. In the state that you are in they send you from pillar to post. You must sit in line – they won’t explain things to you before you get to the front, when you get to the front of the line, they tell you something else, they send you elsewhere. I told myself I would never set foot here again. [age 50-59, rural, cervical symptoms]
Judgemental staff attitudes and association of cervical symptoms with promiscuity and unprotected sex was reported by some women leading to reticence in seeking care.
The problem is that they don’t want to listen to the information that you are giving to them, they just assume that you are having sex without a condom…. they shout at you and say that you should use a condom. [age 20-29, rural, cervical symptoms].
However, some participants had more positive experiences and found medication and treatment relieved their symptoms.
I went to hospital and when I got there I was put in a machine and then they said they don’t see anything, and then I came back here. When I got here, they gave me an injection and tablets, and then it felt better, all was fine. …They said they don’t see anything. [age 30-37, rural, breast symptoms]