Four thematic areas on challenges facing cervical cancer care emerged: (i) patients and community related barriers; (ii) individual healthcare professional’s challenges; (iii) health facility related barriers; and (iv) health policy challenges. Across the data, the challenge of increasing number of cervical cancer patients and late stage at presentations was reported.
The majority of respondents reported challenges that included lack of awareness and knowledge on cervical cancer and available services, inability to pay for screening and diagnostic services, invasion of privacy during pelvic examinations, inadequate psychosocial and family support to patients, and patients’ perceived stigma related to foul smelling vaginal discharges.
Lack of knowledge and awareness about cervical cancer and available services
The women were perceived to be unaware of cervical cancer symptoms, risk factors, and available services for the disease; the women would thus wrongly interpret and attribute the symptoms of cervical cancer to other conditions. Subsequently, they engage in treatment for those perceived conditions and end up reporting to hospitals late when cervical cancer is advanced and treatment outcomes poor.
“. . . you know, it is only when the women know about how cervical cancer presents that they can come to the hospital early and we make the diagnosis and manage them”,
(Gynecologist, 10 yrs)
Women reportedly have inadequate knowledge of cervical cancer symptoms, course and progression. This was thought to influence their help-seeking behavior. Respondents thought that women would report earlier if they knew the symptoms of cervical cancer and believed in the effectiveness of modern medicines in management of cervical cancer.
“The women do not have correct ideas about the cancer. Patients come not knowing they have cervical cancer”,
(Registered Nurse, 8 yrs)
.
Lack of awareness as a barrier was cited by almost all the respondents irrespective of their level of training and hospital of practice, and respondents suggested community awareness campaigns using mass media including the FM radios as a remedy.
“For the way forward, we can have radio programs; the government can sponsor people to go on the radio and have discussions with the community. We also need to do outreaches on cancer and we tell people where to go and what signs to look out for,”
(Comprehensive Nurse, 5.5 yrs)
.
However, some respondents were concerned that radios may not reach the target group - the women.
“We have to use appropriate means for reaching mothers; things like radios are a property of a man in a home, and have been found to not be a good way of giving messages for women in the villages. In the villages, men own the radios and women do not have access to the radios”, ( Registered Nurse / Midwife , 19 yrs ).
Late stage cervical cancers
The majority of cervical cancer patients reportedly present very late when the available treatment modalities cannot help. Late presentations occur for several reasons;
“They say they come late because of lack of money; on the other hand they do not suspect any problem when they are bleeding because women bleed throughout their lifetime. They may relate even abnormal bleeding with their usual bleeding - even if they are above the age of menstruation. But also most health workers miss the diagnosis and giving treatment at early stage, while most hospitals lack medical officers with specialized skills to provide the specialized services,” ( Senior Consultant Gynecologist , 25 yrs ).
Health workers in the peripheral units were reportedly not well equipped to screen and diagnose cervical cancer and may contribute to delaying diagnosis of cancer.
“What I have seen is that the patients first go to the clinics and medical centers where there are no such things as cervical screening for early detection. Also, in the clinics, when someone comes may be with like bleeding, health workers mistake it for something else and he/she treats that. By the time the patients come here, the cancer is in late stage,” ( Comprehensive Nurse , 5 . 5 yrs ).
On the other hand, patients reportedly do not attribute the symptoms they get to cervical cancer but to other common diseases for which they seek care in small health units, clinics and drug shops which are operated by personnel who are not competent to make diagnosis of and manage cervical cancer. In addition, lack of money may prevent patients from promptly seeking care in hospitals with symptoms.
“I interviewed some cervical cancer patients. I found that they have always ignored the early signs such as post coital bleeding and discharges and when you ask them, they say ‘well I did not know it is a sign of a big problem.’ Poverty also makes people go to small health units where those running cannot even detect cancer,” ( Consultant Surgeon , 22 yrs ).
Perceived inappropriate exposure during pelvic examinations
Respondents reported that patients were sometimes deterred from seeking care in hospitals because they would be asked to undress completely, to lie in the lithotomy position (lying on the back with the legs put up and spread apart) and because they were concerned about pain from internal examinations.
“Women do fear exposing their private parts during examinations. That is the fear of undressing themselves and undergoing examination. They also have a fear that the vaginal speculum is very painful”, ( Senior Nursing Officer , 22 yrs ).
Age and gender differences between patients and health workers
Respondents reported that some older women do not like to undress and have their genitals examined by young doctors, particularly young male doctors. They would prefer an older doctor, especially a female doctor to do cervical screening. Even some health workers in the study hospitals reported that they had not had cervical screening because they did not wish their male counterparts to conduct intimate examinations when they do not have any symptoms and there is no risk to life in contrast to pregnancy and delivery when they did not mind male doctors examining them.
“If it is an elderly patient she may not accept the young person to look at her so you find it difficult to convince this lady to get her up the coach and undress; to get her undress when the doctor is a male. But if it is the youths, they are easy,” ( Comprehensive Nurse , 5 . 5 yrs ).
This view was shared by the senior doctors as well;
“They say when they come to hospitals they meet their sons, and daughters. They feel embarrassed to undress before these young doctors”, ( Senior Consultant Gynecologist , 25 yrs ).
Inadequate emotional and financial support for women
Men’s lack of emotional and financial support to women reportedly hinders both cervical screening services and early help-seeking with symptomatic cervical cancer and other diseases affecting women.
“The men should know the health issues concerning women; they should know that this can be a problem to my wife. . . . sometimes instead of going to screening, they want the wives to be going to the garden - so they have to be made aware that this is a serious issue and if the service is there, you allow your woman to go! Or if it is very far, then ride her on that bicycle! Men should support their wives. They should provide transport, give them permission to go screen and should give them the money needed; they should also accompany the wives to the screening centers,” ( Registered Nurse / Midwife , 19 yrs ).
Awareness programs should target men as well so that they have more knowledge about cervical cancer;
“Men need to be sensitized on issues of cervical cancer so that they do not look at children as source of wealth alone but also the risks it carries with it. They should be talked to about this issue of many and frequent child bearing which to men is a source of wealth. In this way they will also help the women fight cervical cancer”, ( Enrolled Midwife , 5 yrs ).
Cervical cancer patients are reportedly often abandoned in the hospitals by relatives.
“The cervical cancer patients also face neglect by their relatives; sometimes when they are having offensive discharges and they have broken the news to the relatives, for them they just say – ‘aah this one is just going to die, why should we care about!’ They end up leaving that patient in the hospital. Maybe because of the fear of the smell, they don’t want to stay nearer to the patient; the patient is just left alone” ( Enrolled Comprehensive Nurse , 2 yrs ).
The belief that cervical cancer is contagious and the prolonged course of cervical cancer were perceived to sometimes explain in part relatives’ abandonment of patients.
“I see these patients are many times neglected by their relatives especially if their cancer is already advanced. Most of the relatives think cervical cancer can transfer when they are nursing the patients. But you know this illness also takes long, so when people are nursing you for long people get tired,” ( Enrolled Midwife , 35 yrs ).
Refusal to consent
Three respondents reported circumstances when cervical cancer patients with early stage operable cancers refused to provide written informed consents for operations to remove their uteri (hysterectomy), with associated significant delays in providing the required care.
“. . . when they come sometimes they don’t want operation. They are like, ‘I don’t have a child or let me first consult my husband.’ Last week there was a forty five years old lady who refused hysterectomy. When we explained to her that the operation is to remove her uterus, she said ‘no, no, no. I don’t have a child, how can you remove my uterus?’ I have seen so far three such cases in the last six months,” ( Comprehensive Nurse , 5 . 5 yrs ).
However, the patients reportedly eventually accept the hysterectomies after discussions with their husbands and family members.
Individual health care professional challenges
The majority of respondents reported that many health professionals, mainly in the lower level health facilities lack specialized training, knowledge and skills for cervical screening; lack the clinical astute to diagnose cervical cancer early based on symptoms and signs.
Inadequate knowledge of healthcare professionals on cervical cancer and care
In both study hospitals respondents were concerned that their colleagues in the other hospitals and lower level health facilities lacked up-to-date knowledge on cervical cancer and the management options.
“The knowledge is lacking across the board. The study of Mutyaba in Mulago hospital showed that health workers have very poor knowledge of screening for cervical cancer. But you know even some gynecologists do not have the correct knowledge on cervical cancer screening and management! I can count for you gynecologists in this country who can do cryotherapy and LEEP well!” ( Gynecologist , 10 yrs ).
The problem of cancer prevention and management in Uganda needs more than just continuous professional development; it requires training of more oncology doctors and nurses so that the workloads related to cancer screening, diagnosis and management can be reduced.
“Then I think more people should study more about cancers. In that case, the diagnosis of cancer will be faster. It would also reduce the work load, more cases are seen, more cases are treated and then in total you have more time with the patient than when you have few gynecologists,” ( Comprehensive Nurse , 5 . 5 yrs ).
Similarly, a senior midwife reiterated training need;
“And also I think more health workers should be trained; in particular the health workers should be trained on screening; even those in the villages (rural health centers) so that in every health center all the health workers have the skills and they can mobilize the community for screening so that the people who have cancers are identified early enough,” ( Enrolled Midwife , 35 yrs ).
Hospital and health system barriers
Long distances to health facilities and associated transport costs, few gynecologists in the region, lack of pathology services, lack of chemotherapy and radiotherapy services were reported barriers to help-seeking and quality care for symptomatic cervical cancer patients.
Long distances and associated transport difficulties to health facilities
A barrier frequently mentioned by more than half of the respondents is the long distances patients travel to the few screening and care facilities. They do not only need money to transport themselves but also ample time. Respondents thought that competing commitments such as gardening may compromise time for screening and delay help-seeking.
“Long distances to Gulu town where screening services are available . . . rural women may not have money and they have to take time off gardening to come to town on those specific days when screenings are done in Gulu and Lacor hospitals. Even though they hear about screening, they will not reach may be due to long distances; and inadequate knowledge of services offered by these hospitals since the hospitals are far away from them”, ( Registered Nurse / Midwife , 8 yrs ).
Impassable roads, long distances and lack of money to pay for transport compound the transport difficulty.
“I see there is problem of transport. . .There is no money and also because the place is far. The road is also bad especially when it rains,” ( Enrolled Midwife , 35 yrs ).
Lack of finances for screening and cervical cancer management
Access to care was also viewed from economic perspectives and convenience to clients.
“High charges for cervical cancer services; this prevents some people from coming for the tests. Patients complain of the 5,000 shillings (2USD) they pay to be checked”, ( Registered Midwife , 7 yrs ).
Free cervical screening might circumvent high cost of services which the majority of women cannot afford;
“Maybe the government can take charge and pay for the services. That is, to provide free cancer screening and care,” ( Comprehensive Nurse , 5 . 5 yrs ).
Few gynecologists and lack of pathologists
Timely and quality biomedical care for cervical cancer may require the presence of gynecologists, in-house pathology services and planned follow up care among other requirements.
“As I talk now there is no any gynecologist in Gulu regional referral hospital. The absence of gynecologists and other specialized doctors delay the process of decision making and that gives room for cancer to grow”, ( Senior Nursing Officer , 22 yrs ).
Lack of gynecologists and cancer specialists in the region reportedly account in part for low quality of care, delays in decisions, diagnoses and offering appropriate services, and subsequent poor treatment outcome.
“Sometimes there is delay in diagnosis and operation. For those diagnosed early, if a gynecologist were present, operations would be done and that would make us get better results.. . . Also the cadre of health workers doing the VIA may also make them miss the diagnosis. There should be a gynecologist to supervise and help them with uncertain cases. These lower cadres may misdiagnose cervical cancer as not cancer and the person goes back home with a cancer. There is also a colposcope at the screening center - but there is no one to use the machine! ”, ( Medical Officer , 15 yrs).
During the study period, there were no resident pathologists in both study hospitals and the region. The respondents were concerned that the lack of in-house pathology services has lead to delay in getting cytology/histology results, losses of biopsy samples and or results with subsequent frustrations to the women and their families who may have to travel to pick their results more than twice.
“Without Pap smear you cannot detect much cancer at an early stage . . . you cannot conclude diagnosis.”, ( Registered Nurse / Midwife , 8 yrs ).
Delayed histology results
Respondents were concern with the repeated delay or even loss of histology/cytology results.
“Sometimes the histology takes up to a month; patients come and find no results. Sometimes samples get lost - usually because they are left lying in theater for quite a long time and someone else can mishandle them. Sometimes results get lost and you may have to repeat the biopsy”, ( Registered Nurse / Midwife , 19 yrs ).
When results delay and or get lost, some clients reportedly may think that they are actually positive for cervical cancer but the health professionals are only withholding the truth from them, and so they get distressed and sometimes never come back for such results.
Lack of blood for transfusion
Two respondents, a nurse and a medical officer emphasized the inevitable delays that often occur in diagnostic and staging procedures such as examination under anesthesia (EUA) because of lack of blood for transfusion.
“Some of the cervical cancer patients come when they are dehydrated; when they have over bled, and they are anemic. So you first have to deal with the anemia and dehydration. But it is very difficult to get blood. Almost every month we experience the problem of lack of blood. Sometimes you reach a point where you have to bring the attendants to donate, which is said to be unacceptable but you have to do it to save the life of the patient,” ( Comprehensive Nurse , 5 . 5 yrs ).
Lack of established palliative care services and inadequate pain control
Two respondents, both nursing staff, were concerned about the frequent lack of oral morphine and the relentless pain that cervical cancer patients undergo.
“Majority of patients prefer morphine but sometimes the drug is lacking or out of stock. We had two patients here that refused codeine and insisted they wanted the other liquid pain killer”, ( Registered Midwife , 7 yrs ).
Lack of food for patients
Some respondents were concerned about inadequate nutritional support by the hospitals to the cervical cancer patients who generally are undernourished, stay in hospitals for long and often deplete their food supplies.
“These patients usually lack nutrition; they are anemic. Patients may not have anything to eat and the hospital also does not provide food yet the cervical cancer patients are very poor and they spent long time in the hospital”, ( Senior Nursing Officer , 22 yrs ).
Health Policy challenges
Respondents in both hospitals were concerned with the lack of enabling policies on key services such as devolution of specialized cancer services to regional hospitals and national roll out of HPV vaccination.
Lack of specialized cancer treatment services and long distance to Mulago
More than two thirds of the respondents were concerned with the lack of radiotherapy and chemotherapy services needed for the care of cervical cancer and other cancer patients in the countryside who spend lots of money to travel to the city for specialized cancer services from Mulago radiotherapy department and the Uganda Cancer Institute (UCI). Such services are supposed to be free or subsided by government so that patients can afford.
“The women with cancers who missed to screen and who now have advanced diseases face a big problem; we need to get for them drugs that can push them somewhere at least. Chemotherapy and radiotherapy should be made available. Radiotherapy should not only be in Mulago. The centers should be many. Let these services be extended into the regional hospitals at least. And they should be cheaper because currently they are not free and that is one reason why patients are not going to Mulago for the radiotherapy. Government should provide free chemotherapy like ART is being given free to HIV clients”, ( Registered Nurse / Midwife , 19 yrs ).
Some cervical cancer patients who are referred for specialized cancer care to Mulago reportedly do not actually go because the patients and families face challenges including unaffordable cost of transport, investigations, and medicines while in Mulago.
“When these patients are referred to Mulago hospital many of them refuse to go because they do not have money for feeding and transport. They also may have fears because they will find strangers there; but when they are in Gulu they can see people from home; people from home can come and visit them but if they are now very far, that will be very difficult,” ( Enrolled Midwife , 35 yrs ).
Devolution of specialized cancer services would mitigate a number of challenges patients from upcountry stations in Uganda face as they travel to the city for specialized care. Devolution of cancer services will also ease on the congestions at the cancer centers in the city.
“For me basically, I would want not to speak about northern Uganda only but the whole of Uganda. We have only one place for treating cancer; why don’t they also regionalize it – east, west, central, north - so that we also have a center for northern Uganda? That will also avoid overcrowding in Mulago. I think it will also reduce on transport cost,” ( Comprehensive Nurse , 5 . 5 yrs ).
Lack of vaccination against the human papilloma virus (HPV)
Respondents discussed the lack of policy on the inclusion of the HPV vaccine into the national immunization program and rolling out of the vaccination program to all districts. Respondents noted that this vaccine is too expensive for most rural community members to afford from the private sector.
“It has taken government about 5 years (since 2008) to roll out the vaccination program from the 2 pilot districts. The vaccination is primary; am putting it number last - not because it is not important but rather because of two reasons - the vaccine is expensive but also because the vaccines available can control only 2–3 types of high risk HPV subtypes, and so vaccination cannot replace the other methods of prevention because it is not 100 % anyway,” ( Gynecologist , 10 yrs ).