Limited knowledge about breast cancer and early detection.

At the individual level, the majority of the women and their spouses indicated that they had heard of breast cancer. In addition, some participants mentioned that they knew someone with or suspected of living with breast cancer who had a successful or unsuccessful story related to early or delayed treatment. As one woman noted:

People in the villages face many challenges but do not know how to overcome them. As women, our response is very positive because we do not want to suffer more consequences. Another thing is that, we just hear about breast cancer, a few days ago we heard that a student from Itumba Day [secondary school] had a painful breast that was bigger than the other. She is still getting treatment (Woman, FGD participant, Itumba).

Many women attributed their awareness about breast cancer to a breast cancer awareness and screening campaign event that took place somewhat a while ago. In reference to the campaign, one woman stated, “I learned about this disease when doctors from Dar es Salaam came to our district. It was a big campaign. We were informed about their presence at our district hospital. Many women went, they taught and examined us about breast cancer.” (Woman, FGD participant, Isongole). This was also supported by one community health worker (CHW) who stated: “More than five years ago, a group of experts came here. They were stationed at the District Hospital, and women from nearby villages went there for breast cancer investigations.” (CHW, Isongole).

Despite reports on occasional breast cancer campaigns, all participants in the study admitted that limited knowledge was a major barrier to their uptake of breast cancer awareness and early detection strategies. As indicated by one of focus group discussion participants:

“We have no education. We do not know the causes of this disease [breast cancer] and its signs and symptoms. Consequently, it is difficult to practice preventive measures.” (Woman, FGD participant, Itumba).

CHWs and health care providers also presented lack of knowledge as a barrier. As one CHW puts it: “lack of knowledge about breast cancer is a challenge. Most women are not aware of what they need to do to avoid breast cancer.” (CHW, Itumba). In terms of breast self-examination, the majority of women indicated a lack of knowledge and self-efficacy to complete the procedure: One FDG participant indicated: “Most of us do not know and do not do breast self-examination. It could happen by chance when taking bath, one may notice something unusual in the breast; but deliberate attempts to do breast self-examination are almost nonexistent” (Woman, FGD participant, Isongole). Nevertheless, women knew that, if they noticed a change in their breasts, they should go to the hospital for further checkup and not to a traditional healer. Very few women and men were aware of mammography and its role in early diagnosis. Likewise, very few knew about clinical breast examination.

Witchcraft beliefs.

Whereas the health care providers stressed the importance of early treatment in breast cancer control, beliefs such as witchcraft seemed to get in the way for some women, as expressed by one health care provider:

According to my knowledge, I only know about three people who suffer from cancer in this village. After asking them, some of them associated it with superstitious belief but since we are experts, we knew that it was not caused by superstition so if they would have been educated, they would be treated in the health facility. (CHW, Isongole).

Limited male partner support.

It was reported that support of the male partner in facilitating early diagnosis of breast cancer is limited, partly due to lack of knowledge about the disease. Male FGD participants attributed minimal knowledge to limited involvement of men in health campaigns. They cited an example of a breast health campaign that was carried about 5 or 7 years ago, [no one could remember the exact year]. One of the male FDG participant commented: “We have no education about this disease. We men are not involved when it comes to intervention targeting women’s health problems. If we were knowledgeable, we could have supported our spouses better. No man would want to see his spouse suffer.” (Male FGD participant, Isongole).

Age and gender norms.

While most women stated that they had no preference regarding the gender of the CHW who would conduct their screening, some participants indicated a potential concern, especially with male and younger CHW. For instance, one male FDG participant shared the concern as follows:

“It will be much easier for a female CHW especially if a woman is elderly. She might be an elderly woman aged 50. If a woman in her 50’s comes to me, she will not be comfortable but a woman with a woman/grandmother it is okay. She will feel shy when I ask her to undress so that I can examine her breast. The same applies to me if I go to the hospital and find a young lady asking me to take off my clothes, I won’t be comfortable. If you find a person of the same gender like yours, it is okay. There should be two genders so that if a person is not comfortable, they can just switch.” (Male FGD participant, Itumba)

Procrastination.

Procrastination of health screening was a major factor that hindered breast cancer screenings for participants. Female participants cited that women in the village did not have a culture of routine check-up, they did not need to see a doctor if they are not sick. That one would only go to a health facility when she feels unwell. One participant attributed this to low self-esteem (poor sense of self-value) as she said:

We women have tendency of saying to ourselves I am apparently healthy why get bothered. We ignore going to health facility for a check up before experiencing sign of disease. So the constraint I am seeing is low self-esteem. This is what torments us, we women we lookdown upon ourselves. (Female FGD participant, Itumba)

This was corroborated by male respondents who also pointed out that not accessing clinical breast exams is a cultural issue, that people in Africa seek healthcare when they are troubled. Likewise, “apparently healthy” African women are less likely to go to the health facility for breast check-up when there is no obvious outward swelling and there is no pain whatsoever. One FGD participant thus said:

“And our behavior, we Africans when we are not sick, we don’t go to the hospital. That I just leave home, I am physically fit and I decide to leave in the morning and go to the hospital and say “let them examine me” aah I have never seen anyone do that aah I have never seen.” (Male FGD participant, Isongole).

This corroborated by another participant who asserted that Africans tend to neglect signs especially when the have low knowledge about the impending consequences:

“I think it is lack of awareness, it is common for Africans not to take things seriously so whenever you see any sign you take it as a part of life. So, when the majority find something unusual, they take no action. They cannot do breast self-examination of the breast for something they do not know, even if has its negative effects. Only a few of them will see something unusual and seek medical attention. For the majority, one may ask herself ‘why do I feel something hard in my breast during bath’ but if she gets used to it, she will take it as normal.” (Male FGD participant, Isongole).

Limited availability of breast health services and resources.

FGD participants pointed out that they were aware of services for cervical screening at the district hospital, but not for breast cancer. This was confirmed by health system managers who admitted that educational and diagnostic services for breast cancer were limited. That the district did not have an organized way of delivering information about breast cancer. During this study, the district had a specific program for early detection of cervical cancer, which did little or nothing about breast cancer. As described by one of the key informants at the district level:

“The screening services we have are for cervical cancer, not breast cancer. For cervical cancer, we conduct outreach programs. However, when a woman presents with a complaint about her breast(s) she is attended to accordingly.” (Health System Manager, Itumba).

Moreover, the district health management confirmed that the district did not have mammography screening services, adding that such services can only be found at the National Hospital in Dar es Salaam, about a thousand kilometers away.

Predominance of curative care at the expense of preventive care.

The managers of health facilities in the study area admitted that they were not aware of existence of the National Guidelines for Early Diagnosis of Breast Cancer and Referral for Treatment [14]. Moreover, there were reports on low priority to women’s breast cancer in the community, which constitutes a hinderance to breast cancer control at the dispensary and community levels. Although it is known that early detection of breast cancer saves lives, it was gathered that efforts towards that direction are minimal. All managers of health facilities admitted that they did not have the current National Guidelines for Early Diagnosis of Breast Cancer and Referral for Treatment [14] for breast cancer care. They further admitted that breast healthcare at the health facilities within the district is mainly curative, that there is no routine breast checkup for early detection of breast cancer. One of the managers succinctly commented:

“We handle patients as per the complaints they come up with. If she does not report about abnormality in the breast, we do not examine it.” (Dispensary In-charge)

Besides, both women and men who participated in this study reported that the health system does not encourage people to engage in preventive practices against breast cancer. One CHW cited that: “We have heard from media that breast cancer exists, but people are not encouraged/interested to go for breast cancer examination.” (CHW, Isongole).

Poverty: Despair due to inability to pay.

It was reported by both male and female FGD participants that women do not access clinical breast examination (CBE) because of despair associated with inability to pay. It is known that health services are not free and, because most women in the rural settings are poor, health checkup including CBE is not prioritized. The respondents argued that because of financial hardship women and most community members decide to seek healthcare and spend their meagre income when they fall sick:

“Life is difficult. It is not easy for a poor woman to spend money on healthcare when she does not feel endangered. She does not go to hospital for routine checkup and our economy is contributing to this fate. When you see you just feel okay, you eat, you are safe, you can’t go. You just say God thank you. Because our rural economy is in shambles, deciding that I should be going for breast health checkup might be considered unnecessary expenditure.” (Male FGD participant, Isongole).

Limited health insurance scheme.

It was reported by both male and female FGD participants that health insurance in the rural settings is failing to meet people’s expectations of accessing “free” services, thereby demotivating them from seeking healthcare including breast health checkup. Some participants argued that there is a mismatch between what people are told when they are being incentivized to become members of the Community Health Fund (CHF) and what they actually experience when they become members. They are told that if they enroll in the CHF, they would not incur extra costs when they fall sick. To the contrary, after they enroll, they realize the CHF does not cover all their health care needs. For instance, the respondents expressed their disappointment on out of stock prescriptions in the district hospital that they had to buy from private pharmacies. As one, the FGD participants stated:

“It is true that people were very motivated to pay for insurance but even if you have insurance, you will often not get all the prescribed medicines. You get some and they tell you others are out of stock, you have to go and buy from the private pharmacy. The problem that I have seen is that when medicines are prescribed if they are 5, you will be given 2 and the rest you will be told to go and buy; and they even show you the shop/pharmacy. All these happen despite having health insurance.” (Male FGD participant, Isongole).