Health care providers
Providers in our sample had an average age of 29 years and an average of 7 years of professional experience (see Table 3). The majority was male.
Women receiving care
Most women receiving care in the sample were either in treatment for cervical cancer or had completed treatment (see Table 4). Women’s average age was 40. Approximately one-third was HIV-positive. Most were married, lived in urban areas or small towns, and were from modest socioeconomic backgrounds.
Overview of themes
The main themes and sub-themes found in the data reflected both our research aims (e.g., barriers to care, sources of delay, low service availability) and emergent trends (e.g., poor provider-patient communication). Themes are summarized in Table 5 and discussed below.
Theme: limited service availability
Sub-theme: no screening or preventative treatment provided
Providers reported that there were few screening, diagnostic, or treatment services offered in East Gojjam Zone outside of secondary referral facilities. When asked about the screening services that they offered, most providers at primary facilities reported that they provided symptom assessment (sometimes accompanied by unassisted visual inspection) and referrals for further screening or diagnosis.
We don’t treat here, and if we suspect the case to be cervical cancer based on the symptoms, we refer to better facilities (Midwife 1, Health Center).
It is difficult to even say [that we do] screening. We review clinical symptoms only and refer them. We don’t have the instruments to screen (Midwife 2, District Hospital)
Providers reported offering VIA at only four of the 14 primary care-level facilities, and only one primary care facility was reported as offering cryotherapy. None offered diagnostic or therapeutic treatment services. The two referral hospitals in our sample did offer a comprehensive suite of preventive and diagnostic services and preventive treatment (i.e., cryotherapy).
Sub-theme: patients leapfrog primary care
Although patients did not mention the lack of services at lower-level facilities directly, most mentioned initiating care either at a secondary referral hospital or in the private sector, indicating that they did not believe that public primary facilities could help them. In addition, their recommendations for improving care centered on increasing services at the community level.
Because if services were available at hospitals close to us, we would not have to incur transportation and other unnecessary costs in addition to all the hardships we face to get to the place of referral. If that was the situation, you see, we could get care close to our homes and be close to our families. In addition, I think it would be positive if more hospitals and health facilities were built and staffed to avoid long waits (Patient 1, Currently in treatment, Interview).
Sub-theme: lack of infrastructure
When explaining the lack of cervical cancer services at their facilities, providers stated that most facilities lacked the equipment, supplies, or private space necessary for screening or diagnosis.
The first [gap] is a lack of a trained workforce. Even the trained ones, like me, are not providing services. In Debre Markos Hospital, they have a separate examination room, instruments are available, and the service is being provided on the spot. Here there are space and supply-related challenges (Nurse 1, Rural Health Center).
Sub-theme: lack of training
Lack of training was another common reason cited for the low level of service provision. Only half of providers interviewed had received in-service training on cervical cancer screening and preventative treatment, and two-thirds said that they had low confidence in their ability to provide these services. Most midlevel providers had no in-service training on cervical cancer. Several providers reported that they learned about cervical cancer on their own by reviewing textbooks and pamphlets.
I have some knowledge based on the clients’ problems that I encounter, but I didn’t have any training (Health Officer 3, Rural Health Center)
I have downloaded some reference documents from the internet. I also use Harrison’s text book [of internal Medicine] shared by my friend. We also download gynecological text books (Health Officer 2, Urban Health Center)
Sub-theme: lack of social support services
In addition to the lack of clinical services for women with suspected or invasive cervical cancer, social support services such as transportation assistance, financial support, or palliative or home care were largely absent from facilities. Only three facilities sampled linked patients to transport, financial or housing funds, and these often seemed to be ad hoc initiatives of individual health care providers rather than systematic programs.
Sometimes, when they can’t get transportation, we facilitate taking them at least to Motta [Town], on their way to Bahir Dar Referral Hospital. (Health Officer 1, District Hospital)
When describing their course of treatment, several women receiving care appreciatively highlighted health providers who went out of their way to provide ad hoc transport, counseling, or other types of support in an attempt to connect them to further treatment.
The health care provider …took me to Black Lion Hospital with his own car and covered the different financial issues that I had. I would like to thank him (Patient 13, Treatment completed, Interview).
However, women’s predominant sources of social support were family, friends, and the MWECS support center.
My children help me a lot and support me with all they have and they took care of me every time I was sick and couldn’t take care of myself. And also my neighbors, they support me like they are my own family (Patient 4, Awaiting treatment, Focus Group).
Theme: weak referral and follow-up systems
Sub-theme: lack of formal feedback and follow-up
Most providers commented on the shortcomings of referral arrangements. Further, they noted that these systems were slow and lacked mechanisms for follow-up and feedback. A third of providers commented on feedback mechanisms, reporting that once they had made referrals, they had no way of knowing whether their patients were able to access follow-up care, let alone what types of care they were receiving. Providers who had referred patients for follow-up care were often exasperated on their behalf.
To begin with, no one sends referral feedback to you from Addis Ababa and Bahir Dar. Forget giving feedback, they do not even answer your phone call! I called a provider two times and on the third call, after he knew my number, he didn’t answer…. Even though I don’t get referral feedback, as the number of my clients is small, I call to them and ask about their status. (Midwife 3, Referral Hospital)
To tell the truth, we didn’t have it as a routine practice to track status of all referred cases. (Health Officer 4, Urban Health Center)
Sub-theme: Ad hoc follow up systems
Informal phone communication was mentioned by several providers particularly those at larger facilities, and, appreciatively, by patients, as a way of following up on referrals.
We exchange telephone numbers with our patients and advise them to communicate with us when they reach there. We also contact the cervical cancer service provider to receive the referred cases by indicating the name of the client and date of the referral (Physician 2, Referral Hospital)
Theme: barriers to care
Sub-theme: low risk perception and lack of knowledge
Providers identified women’s low risk perception and limited awareness of cervical cancer as one of the chief barriers to seeking and entering care.
Due to low levels of community awareness, most people do not come for routine screening and most patients come once the disease has advanced. (Physician 3, Referral Hospital)
The providers’ sentiments were corroborated by the finding that only half the women participating in the study had ever heard of cervical cancer pre-diagnosis. Almost all women initiated care because they were symptomatic. The non-symptomatic women who initiated screening had all received direct health education, either through the community or, more often, from their HIV treatment counselors. Those who had heard of cervical cancer prior to their diagnosis assumed that they were not at risk because they were not sexually active or were monogamous.
I had heard about [cervical cancer] when people from the government came to Hawassa once to call up on us to get checked… But I did not think I would get it as I was not having any sexual relations … (Patient 14, Treatment completed, Focus Group).
I did not think I would have such a disease, you see this girl died from it and I just assumed that she had the disease because she went out with many men. How could I imagine that one could get it just living their lives? (Patient 7, Awaiting treatment, Focus Group).
Notably, although low awareness and low risk perception emerged from patients’ stories as barriers to care no patients directly mentioned their lack of awareness or low risk perceptions about cervical cancer as barriers for entering care.
Patients described stigma as a substantial barrier to care. Patients said that they delayed seeking care because they felt both ashamed and hopeless about their potential diagnosis. They perceived cervical cancer to be viewed extremely negatively by their communities, particularly as it is thought to be caused by promiscuity or to be a punishment from God. Relatedly, some women also indicated that they had been reluctant to initiate treatment due to shame surrounding their condition.
My main barrier [to care] was community perceptions. Until I came here [MWECS support center] and saw other women who had similar problems like me, I had a severe psychological problem after I found out that my problem was cervical cancer; because in my community I never heard or saw such cases before. I was worried that the community would discriminate against me and stigmatize me when they heard about my problem. I felt sadness until I came here and knew there were other women who had similar problems to me. (Patient 11, Awaiting treatment, Interview)
Well, what I want to say a little bit about is the attitude of the community towards cervical cancer. People see cervical cancer as something so different from other illnesses and something that is so terrible, I mean to say that the society has the belief that a person who has this illness is cursed from above and that this person is a sinner who has done something to upset God (Patient 1, Currently in treatment, Interview)
Sub-theme: societal barriers
Some also cited as a barrier women’s need to gain permission from husbands for obtaining care, and the views of some husbands that no care is warranted unless women are incapacitated.
For example, there are families of farmers and the husbands will not allow his wife to leave her work and go anywhere. So long as she is able to walk he will not be convinced that she is sick. For him to believe that she is sick she must be unable to walk or be bedridden, so he will ask her why she is asking to go to the hospital when she is able to walk around. So if you are from a family of farmers or an illiterate family, the only time you come to the hospital is when you are really sick and you cannot move or are bedridden. (Patient 2, Post-screening, asymptomatic, Interview)
Women perceived their compatriots as facing high hurdles in justifying their need for care to their husbands. However, when women talked about their own husbands, most reported that they had been supportive of them receiving care.
Sub-theme: cost for receiving treatment in Addis Ababa
While cervical cancer screening and treatment services are free in Ethiopia for insured and low-income women (upon proof of status), women described the costs of laboratory tests, drugs, as well as of transport to and housing in the capital, as a significant barrier to care. Two-thirds of women receiving care mentioned finances as a barrier, citing lack of money as a reason for delaying treatment and for being forced to undergo substandard care options.
My big problem was financial problems—‘My pocket was empty’—I did not have cattle and farms for harvesting. I earned money from selling different drinks like coffee, tea and ‘tella’ but after I got sick and becomes bedridden, I did not have any source of income. My younger child suffered with me. He borrowed money from different people to treat me (Patient 13, Treatment completed, Interview).
The medication that I had prior to radiation was so expensive. One dose cost a 1550 birr and it could only be bought from abroad. So I was willing to pay for one or two doses, but they told me it had to be six consecutive doses and it could not be interrupted. So I told them I could not afford it and they changed my treatment to radiation. (Patient 1, Currently in treatment, Interview)
Unless women had a provider or relative advocating for them and connecting them to social support services, they often went without care, as was the case for this patient:
They told me to go to Addis Ababa and told me they were not able to help me there [at the facility]. And I have no money or energy to go to Addis Ababa… I just want to feel better and be healed here because I cannot go to where they referred me to and I wanted them to at least take pity on me and help me here. (Patient 9, Awaiting treatment, Interview)
Women expressed a strong preference for receiving care close to where they live, especially given their compromised health. This patient’s statement reveals her fatigue and desire for emotional support from providers.
Theme: sources of delay in accessing appropriate treatment once care is initiated
Patients and providers identified multiple sources of delay for patients in receiving care once they had initiated care.
Sub-theme: misdiagnosis and improper treatment
A notable source of delay was that many women were misdiagnosed during their initial assessments and had to make repeated visits, often to private facilities, before being correctly diagnosed.
I …had stabbing pain on my waist and my lower abdomen. I was busy with work…so I just went to the pharmacy … he told me that it was nothing serious and he sold me Amoxicillin. I tell you it is these pharmacies that kill people. (Patient 6, Treatment Completed, Focus Group)
Approximately 40% of women reported receiving an incorrect diagnosis or treatment. Some women reported being given medication such as antibiotics or analgesics during their initial visits rather than a referral.
My doctor was also telling me I have a kidney infection and it was the case manager who was a friend who told me to go to Woliso hospital. So there was a lot of delay. (Patient 7, Awaiting treatment, Focus Group)
Provider mistakes coupled with community stigma led women to feel alone in managing their illness.
Mostly the problem is with the physicians in our area, they immediately give us medication but they do not tell us to go see a doctor as problems like cervical cancer could exist. If they had given us advice and told us what problems we had, we could have taken early action to protect ourselves… It is because of our own strength that we survive. Even the society stigmatizes you. But me personally I have convinced myself that I am ok and I will be ok, that is why I am alive today. (Patient 7, Awaiting treatment, Focus Group)
It is not clear whether these mistakes were due to shortcomings in providers’ diagnostic skills or to providers’ desire to somehow help their patients despite the lack of appropriate treatment options at their facility. A few providers did note difficulties in diagnosing cervical cancer. They described challenges in distinguishing cervical cancer from sexually transmitted infections and noted the challenges in making accurate diagnosis without better training and a steadier flow of patients.
When patients come with vaginal discharge, it would often be taken as sexually transmitted disease (Physician 1, Health Center)
Clients are usually misdiagnosed even with vaginal discharge; they would go back home after getting managed as an STI case. (Health Officer 6, Health Center)
We diagnose what we know. I may diagnose another disease as I don’t have the knowledge of cervical cancer…There is a knowledge and training gap. No exposure exists and we may misdiagnose cases. There is a fistula-trained expert here. When we are in doubt, we just consult and confirm [with him] for fistula cases. We don’t have the supplies and diagnostics for cervical cancer. We are not practicing screening. We need the training and to have a dedicated expert for that. (Midwife 4, Rural Health Center)
Sub-theme: lack of equipment and resources
Most service delays reported by women receiving care occurred post-screening, during treatment. The most frequent reasons for delay were broken treatment equipment and a shortage of hospital beds. Providers rarely noted the lack of treatment and laboratory resources post-screening as a source of delay.
Yes, it has been 15 days since the chemotherapy machine has been out of order and we cannot get treatment until it is fixed. (Patient 6, Treatment completed, Focus Group)
So that is where they took samples from and then …they sent [the sample] claiming that the equipment is not available here, so I had to wait for 2 months until I received the results. During that time my illness was getting worse and worse and then I had to wait another 3 months to get any kind of treatment after the diagnosis was made…so I waited for 5 months without any treatment. (Patient 1, Currently in treatment, Interview)
Sub-theme: long wait times between appointments
A frequently mentioned source of delay in receiving care was the long wait times for follow up appointments. Providers noted that patients often were not able to attend referral appointments, often due to long wait times at crowded referral hospitals. This inability to make appointments was seen as contributing to delayed care and disease progression, particularly for poorer, rural women.
Referred patients complain that they don’t get care on time. They may have long appointment waits while having advanced disease. I know some referred patients who died without getting the care due to long [waits for] appointments at the referral hospital. (Health Officer 3, Rural Health Center)
Women receiving care also frequently noted the long wait times when asked directly about delays and noted the long times between appointments when describing their care history.
When I am coming to get these treatments, I am given many [appointments] and long [waits between] appointments, and even worse you might not get any service when you come on the date of your appointment … Perhaps what I would have like to be done differently relates to … the lengthy appointments. I actually felt sad and emotional whenever they gave me appointments because I thought the time was too long. (Patient 3, Treatment completed, Interview)
Theme: patient-provider communication
Sub-theme: lack of communication
Not only was quality of care compromised by delayed and inaccurate diagnoses, but women receiving care also emphasized poor provider–patient communication as a source of delay and inadequate care. Although several patients had positive, supportive relationships with providers, most patients described either a lack of communication or poor-quality provider communications around their diagnosis and treatment. Some patients were never directly told of their diagnosis.
R1: The doctor told me that I had to come to Addis Ababa to get the treatment and I knew immediately that what I had was cancer.
I: But did the doctor inform you clearly that it was cervical cancer?
R1: No, when I heard him saying that I had to have radiation treatment I concluded that I had cancer.
I: So the doctor did not say it was cancer?
R1: No he did not, and no one has told me still. (Patient 7, Awaiting treatment, Focus Group)
Sub-theme: power imbalances
As indirectly shown above, both patients and providers mention that patients often do not feel comfortable asking questions. Patients revealed deep feelings of powerlessness and fear in the face of their diagnosis but also of provider authority. Some expressed fear of provider retaliation or provision of substandard care should they ask for more information or about alternatives to provider recommendations.
I wanted to ask (the provider) if I am going to die. And I also wanted to ask if there is another alternative than the operation. … Yes, I am scared to ask questions because if I say something wrong, I am scared he will maybe cut me in the wrong place and not do his best. (Patient 12, Awaiting treatment, Focus Group)
Sub-theme: language barriers
Language barriers also posed a problem for patients communicating with providers among the Oromo women interviewed, and they noted the importance of translators.
At Black Lion Hospital I felt uncomfortable due to the language barrier. We [my providers and I] did not understand each other. Due to this reason there was a 2-month delay for my follow up and therapy. (Patient 11, Awaiting treatment, Interview)
Sub-theme: patient shyness
While many providers acknowledged the difficulty that patients have in asking questions on topics where discussion is socially discouraged, some still placed responsibility on patients to raise issues and direct their own care.
Maybe the difficulty lies with clients who fail to openly discuss health issues around such private body parts. (Midwife 5, District Hospital)
Theme: recommendations for improving care
Sub-theme: expand and decentralize screening, diagnosis, and treatment services
One of the most frequent suggestions by both providers and patients for improving care was to expand screening, diagnosis, and treatment services. Suggestions included having more trained providers and more treatment sites. Relatedly, many patients urged that more comprehensive services, especially diagnostic and preventative treatment services, be located closer to where patients live, rather than at referral hospitals. Providers also expressed frustration that that equipment and training did not reach the lower level facilities and that local and regional health officials did not appear to prioritize cervical cancer.
There is a lack of human resource in the cancer field, you go to the hospital and you see the lobby full of people and only a few doctors to help them. And then these few specialists are always called in to meetings while the sick are waiting and then they are replaced by doctors who are not specialists to look after us and they just call us in and give us another appointment…And also if we could have cancer treatment centers in our regions so that we do not have to come all the way to Addis Ababa, that would be something. … (Patient 14, Treatment completed, Focus Group)
The [local] intervention sites need to be comprehensive with screening, lab confirmation, and treatment [services]. (Midwife 6, District Hospital)
Sub-theme: increase community awareness of cervical cancer
The second most frequent suggestion for improving care, from both providers and patients, was to increase community awareness of cervical cancer and prevention through community health education and outreach.
So I think the community needs to know that cervical cancer is not a punishment from God or an illness of sinners, so creating awareness about the illness is very important to change this wrong belief. … You see the government has not given cervical cancer a lot of focus because it is a non-communicable disease. … It should be given coverage on all media just like other communicable illnesses as well. (Patient 7, Awaiting treatment, Focus Group).
Providers also strongly felt that community education and awareness-raising would diminish stigma and make it easier for patients to talk with them about symptoms and concerns:
“If awareness is created, patients would tell you their secrets, they (would) have trust in providers (Midwife 7, District Hospital)
Patients noted that in order to decrease stigma, health education should include positive (as opposed to fear-based) messages that cervical cancer was preventable and treatable.
It is very important that women are aware that the treatment exists and that they should get screened for cervical cancer now and then before they are really ill and it is too late (Patient 3, Treatment completed, Interview).
Sub-theme: increase leadership on issue
Both patients and providers noted that cervical cancer health education is needed not only for women, but also health care providers and government leaders to increase a sense of urgency around the problem. Providers especially felt that cervical cancer was currently treated as a second-tier concern.
To improve the quality, the region has to support the [cervical cancer] program well. There is no follow up; no one asks how the program is running, what has been done and how it is done (Midwife 3, Referral Hospital)
It [cervical cancer] needs the attention of decision makers. Not only at higher level, but also lower levels (Health Officer 2, Urban Health Center)
I know cervical cancer takes secondary status nationally (Midwife 7, District Hospital)
Triangulation of patient and provider themes
In general, the themes we found were common between providers and patients (see Table 5). The overlap was greatest in the recommendations for improving care. An interesting difference was that providers saw a lack of patient education as the primary barrier to care while patients emphasize their financial difficulties, perhaps reflecting the screening focus of providers, and the treatment focus of the women receiving care. In addition, while providers frequently noted poor follow-up and referral systems, patients did not mention problems with the components of these systems, only the wait times for receiving appointments. Although providers were aware that wait times were long for follow up and referral services, few mentioned the shortages of laboratory services or supplies, beds, and functioning equipment as the reasons for delays as patients did. Perhaps the most striking difference is on the issue of stigma, which patients repeatedly state as their primary challenge in living with cervical cancer and an important barrier for initiating and follow up care. Only one provider mentioned stigma as a patient challenge, and then, only in passing. Finally, on the topic of patient-provider communication, while both patients and providers were aware that patients had difficulty talking about cancer and reproductive health, providers seemed largely unaware of any shortcomings on their own part in communicating clearly with patients. Only one provider mentioned that he had difficulty discussing cancer with patients.
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