Socio-demographic characteristics
Twenty five patients and health care providers participated; 12 breast cancer patients and 13 healthcare providers. Patient age ranged from 26- 65 years. Health care providers included an oncologist (1), gynaecologist and obstetrician (1), general surgeons (3), public health officers (2), and nurses (6) who were involved in diagnosis, treatment and management of breast cancer patients. (See Supplementary File 2 for details).
Themes and sub-themes (categories) identified
Two main themes emerged from the narrations of the participants regarding the barriers to early diagnosis of breast cancer - patient- and health system-related barriers. Five sub-themes were identified. Within the theme of patient-related barriers, three sub-themes were identified - lack of awareness and knowledge about breast cancer, beliefs in traditional and religious treatments, and lack of financial and social support. Within the theme of health system-related barriers, two sub-themes were identified - services rendered by healthcare providers and the functioning of the health care facilities.
Patient related-barriers
Lack of knowledge and awareness about breast cancer
. Almost all patients described a general lack of awareness and knowledge about risk factors, signs and symptoms of breast cancer as well as a general lack of community activity and attention given to early detection of breast cancer. Most patient participants were unaware of breast cancer before diagnosis and had limited knowledge about the disease, and this had great impact on when they sought medical attention. Most sought medical intervention once the disease was advanced. Most patient participants explained that they detected abnormalities on their breasts accidentally when they were in bathroom or when undressing before bed. None had a history of breast self-examination or clinical check-ups.
“I never heard about breast cancer before. I saw the swelling four years back but I did not inform to anyone in the family since it was painless but later becomes large and produce discharge.” (45 year old patient)
“I did not check my breast before. I saw the swelling accidentally. I did not go to health facility for check-up of my breast.” (26 year old patient)
Patients’ perceptions that their initial symptoms were harmless delayed them seeking medical care. Many failed to seek early medical care unless the symptoms interfered with their day-to-day activities. Some did not give attention to early symptoms.
“I saw the swelling on my breast 4 years ago. But I was not going to any health facility since I was healthy for a long time and it was painless.”(37 year old patient)
Patients also explained that the painless nature of a swelling or mass led them to perceive the breast change as a common and self-limiting problem, and this resulted in delays seeking medical care. Many patients explained they did not initially think their symptoms could be cancer and all patients sought medical care at least 12 months after they first noticed symptoms. Patients from rural areas described delays in seeking healthcare due to distance, transportation challenges, cost of care, but mostly due to lack of information related to the disease.
Beliefs in traditional medicine and religious practice for treatments
All patients interviewed delayed seeking medical care in favour of using traditional and spiritual treatments (holy water) because there is a preference to go traditional healers as the first choice of treatment rather than to heath care facilities; many also believed that swelling could be healed or treated by applying herbal medications. Patients stated that limited knowledge led them to perceive their illness with the same traditional beliefs pervasive in many villages.
“I was using traditional treatment like onion, Tena Adam and other leaves. I thought it was the disease given from GOD. ” (55 year old patient).
“I went to traditional healer and I took herbal medication for a long time since I thought it as 'Bigunji' (local name to swelling with pus) and continued to use the traditional treatment. Finally I came to hospital when the disease becomes sever and sever. ” (45 year old patient)
The patient interviews further revealed different beliefs that contributed to delays in seeking medical care for breast cancer. Losing a breast (mastectomy) was described as taboo. The fear expressed was that if a woman loses her breast due to surgery, she might die, could not give birth, or she would be divorced by her husband. As a result, most women hid their problem and sought medical care as a final option only after trying all traditional or cultural treatment approaches. Again, patients shared that most of people are not aware of the disease or its treatment, and therefore don’t advise women to go health facilities. Swelling in the breast is not perceived as a treatable medical problem, but rather as “God's punishment”. This ailment commonly called “Meksefit” in the community is locally believed as a disease related to demonic/ witchcraft.
“My community does not support the medical treatment related breast cancer since they perceived that……..if it is touched by scissor or syringe it will spread and kill the patient.” (26 year old patient)
“I did not think that cancer has any treatment in the hospital since my community perceived that cancer is killer and does not have any treatment in the hospital. But we believe on herbal medication and holy water.” (45 year old patient)
Lack of financial and social support
Many patients explained they did not have financial resources to afford the treatment and transportation costs; thus contributing to delays in care and a barrier to early diagnosis. Those individuals with economic means were better positioned to get early diagnosis and treatment. Patients described borrowing money from a neighbor, friend, or family to get medical care, but explained how this was not easy in their communities where everyone had limited economic recourses. Patients also felt their family responsibilities and a general lack of social and family support prevented them from seeking early medical care; and even after seeking medical care almost all patients face economic hardship with little money to pay for medical costs. To amass money for care patients engaged in borrowing, begging on streets, or selling their land, cattle, or other property; and during that time interval the disease is untreated and progresses.
“I have family responsibility since my husband is died. My breast problem starts before two years. But I could not come early to health facility because I did not have money for transport and treatment service requested, there is no anyone who supports me.”(60 year old patient).
“I had no money for medication and transportation since my husband was died and all the family responsibility is on me. Even now I was not paid the money for surgery. I came to this hospital after selling my farm land and borrowing some money from my families.”(35 year old patient)
Health system related barriers
Health care provider related barriers
Similar to patient accounts, providers also described poor breast self-awareness and knowledge regarding importance of recognizing breast changes, and early signs and symptoms of breast cancer.
“Majority of the patients are coming late after the disease is advanced. This is because lack of awareness and knowledge about the disease since they did not consider the initial signs and symptoms as serious.” (60 year old Gynaecologist)
“Most of the patients came at advanced stage (Above stage III) and this is due to lack of awareness about the disease. Their awareness about breast self-examination and early clinical check-up is very nil”. (30 years old general surgeon)
Healthcare providers also stated that most women coming from rural areas present at advanced stage disease compared to urban patients. Providers described a perception that lack of access to information among rural women may have to do with lower level of education, literacy rate, working in the home.
“……since there is no information access either through magazines, newspapers or media, the awareness of the rural people is very low. Peoples from the urban areas relatively come early as they feel any changes on their breast.”(34 year old Surgeon)
“I can say almost all patients are used herbal medications before coming to hospital. Some patients also spend most of the time going to holy water in orthodox religion and praying in Protestants since they consider it as a cultural disease. ”(A27 year old nurse
Many patients experienced delays in transitions of care due to poor provider knowledge and misdiagnosis. Patients are often given analgesics or other treatments for several months at primary care facilities before receiving an appropriate referral to a facility for breast cancer care. They describe delays in getting the right diagnosis and how the providers contribute to delays in care. Misdiagnosis and delays in referring patients early to the regional diagnostic hospital were the most frequently mentioned problem leading to patient’s presenting with late stage disease. Almost all patients described a history of misdiagnosis during their initial visits to the health care provider and being placed on some form of prolonged treatment for an incorrect diagnosis.
“I went to private health facility first and they told me as it is other breast problem and they gave me treatment but I was not improved. Then I went to another private hospital and they said me you have breast TB and they gave me TB treatment and I took for 6 month.” (35 year old patient).
“First I went to the private clinic and the doctor told me that do not worry for this. It is the effect of the contraceptive you used before so it would be lost by itself and he ordered me 6 injections. I was hoping him and I wait a long time but the swelling becomes increase and starts to produce bloody discharge then I came to hospital and diagnosed as cancer.”(35 year old patient)
Health care providers also stated that misdiagnosis is a common problem in breast cancer care. This is usually a problem at primary health care facilities since they fail to detect such cases early and refer patients in a timely fashion. Clinical breast examination is not commonly practiced in the facilities unless patients are coming with complaint of breast abnormalities. Patients elaborated on appointment delays, poor attention given to them while in the facilities, inadequate examinations and poor communication between health care providers and patients. These were some of the reasons which led patients not to have additional follow up visits to the health care facilities and instead look to traditional means of treatment.
“Usually there is misdiagnosis of cases especially among the young's as a breast lump or fibro adenoma but after sometime the patients may came again with advanced stage breast cancer. I know a woman who was diagnosed with other breast problem but after a long time she come again and diagnosed as breast cancer.” (32 year old provider).
“The first doctor who has diagnosed me was not good. He said all part of your breast should be removed. He did not reassure me. He made me to worry and frightened then I went to traditional treatment areas but I was not improved of the problem and now the disease is spread to my body.”(30 year old patient).
Health facility related barriers
The patients faced problems with access to health facilities due to long distances of the facilities from their home and high transportation costs. The referral experience was also very poor at health centers and private clinics even in cases when patients presented early for appropriate diagnosis and treatment. All of the patients had a referral history to other health facilities for diagnostic investigations. The most important health facility barrier mentioned by the providers and patients was diagnostic waiting time. They mentioned that the waiting time for getting pathologic lab test results takes usually more than a month, and the absence of the tests in some of the hospitals makes the problem worse. Patients explained they required several visits to health facilities to get their diagnosis. They first went to health centres where drugs were prescribed without proper assessment. When they saw that their situation was not changing as they expected, the patients then went to private clinics. It was after these attempts that the women were then finally referred to the diagnosing hospital. At a minimum, patients visited two health facilities before they got their final diagnosis. The providers similarly explained that the absence of diagnostic tests and treatment options for breast cancer in the hospitals were the main problem contributing to delays in care. Providers described situations when they felt obligated to refer patients to other hospitals for diagnosis and treatments, knowing this could be very expensive for patients and that they quite possibly patients would not be able to afford to go the referral center.
“I wait a month to get my laboratory result but I faced many difficulties when they referred me to this hospital because of distance. Since there is no transport access and the medical care costs are so expensive. I came to this hospital last week but they said me there is no bed and I returned back at that time and now I came again. I visited three health facilities one private and two government health facilities before.”(40 year old patient)
“Our major challenge here is we have no diagnostic tests, standard treatments and a screening tool. So we refer patients to Addis Ababa for pathologic tests and treatments but sometimes they come back without getting the service due to over schedule, so we cannot do anything to them because they have non operable cancer then they will disappeared or die in their home.” (34 year old surgeon)
Patients explained that the absence of screening and health education programs, including skilled professionals, are some of the health system challenges to providing early detection, diagnosis and treatment of breast cancer. Once the patients have already paid for prior (incorrect) treatment, travel, and clinic visits during the referral process, they stated they cannot afford the additional costs of care when they arrive at a facility capable of diagnosing and treatment breast cancer. They mentioned that the surgery itself cost much as 2000 Ethiopian birr, and they also have to consider the cost additional transportation, the hospital bed, diagnostic tests, and medications.
“………..there is no organized way of giving health education about breast cancer in this hospital since there are no skilled professionals on the area.” (30 year old oncologist)
“Cancer treatment is very, very expensive. I have no word to describe the costs. I finished all my money for laboratory, transportation, bed and other treatments. The cost is very much…. not only for the poor but also for the riches. The government should give attention to it.”(40 year old patient)