STRENGTHS AND LIMITATIONS OF THIS STUDY

The study was based on a qualitative phenomenological design that allowed us to explore the lived experience of patients with cervical cancer in Addis Ababa.

We triangulated the qualitative data with previous quantitative findings of the same study.

Social desirability bias may have unconsciously biased the women while explaining their experiences.

Some participants might have had limitations in articulating their experiences due to health literacy levels or age factors.

Introduction

Although cervical cancer can be prevented and controlled, the burden of the disease continues to rise, particularly in low and middle income countries (LMICs) where incidence and mortality rates are disproportionately higher compared with other regions of the world. For example, according to GLOBOCAN 2022, an estimated 660 000 women were diagnosed with cervical cancer while 350 000 died from the disease globally, with most of the burden in LMICs.1 This is largely due to barriers, including a lack of high quality screening, and diagnostic and treatment services. Moreover, if the gaps in screening, diagnostic and treatment services in LMICs are not addressed through increased investment and strategic partnerships of public and private stakeholders, the mortality burden will be doubled by 2030.1 In 2022, 8168 cervical cancer cases and 5975 deaths occurred in Ethiopia, accounting for 10.2% of the total cancer cases and 10.9% of cancer deaths in women.1 2

WHO has approved an ambitious global approach to the elimination of cervical cancer. This strategy set three targets that should be met by 2030: 90% of adolescent girls should receive HPV vaccines, 70% of women should be screened for cervical cancer by the age of 35 and 45 years and 90% of women with cervical cancer should be able to receive treatment.3 However, in Ethiopia, accessibility, coverage and uptake of HPV vaccination, cervical cancer screening, and diagnosis and treatment are limited.4–8 Since the introduction of HPV vaccination in Ethiopia in 2018, >6.3 million adolescent (86% coverage of first dose and 75% coverage of last dose) girls have received HPV vaccination in Ethiopia.9 Uptake of cervical cancer screening in Ethiopia is limited, with coverage of <4%.10 Early detection and treatment of cervical cancer is an important prognostic factor for survival.11–13 However, more than two-thirds of patients with cervical cancer were diagnosed at an advanced stage of the cancer, mainly related to patient and provider related delays. Notably, a previous study indicated that about 25% and 75% of women with cervical cancer in Addis Ababa had health-seeking and diagnostic delays, respectively.14

Moreover, a substantial proportion of patients do not adhere to treatment due to several patient and provider related factors, such as failure to recognise symptoms as important, fear of treatment (surgery, radiotherapy and chemotherapy), use of traditional healers, misconception about the importance of conventional treatment and cost of treatment (poverty).15–17 However, as these studies were mainly quantitative, they did not provide an in-depth description of the contextual barriers to early diagnosis and treatment of cervical cancer. Thus this study aimed to explore barriers to early diagnosis and treatment of cervical cancer in Ethiopia.

Methods and materialsStudy design, setting and population

This study was part of an embedded mixed methods (QUANI+quali) study conducted in Tikur Anbessa Specialised Hospital (TASH), Addis Ababa, Ethiopia. The qualitative part of the study was embedded in a larger quantitative study. TASH is a national referral hospital that provides cancer diagnostic and treatment services, including radiotherapy. We included patients with cervical cancer who were receiving care and treatment at TASH and were willing and able to participate in the study. The quantitative data and findings were published elsewhere.14

The qualitative part of the study was based on a phenomenological study design to explore barriers to early diagnosis and treatment of cervical cancer in Addis Ababa. This design is important to describe and explore the lived experience of patients during the diagnosis and treatment of cervical cancer.18 19

We selected the study participants using a purposive sampling technique based on their experience of diagnostic or treatment delays. We included 24 patients with diagnostic delay (patients who were delayed for >120 days before they received diagnostic confirmation of cancer following their symptom recognition) and 16 patients with treatment delay (patients who were delayed for >60 days to initiate treatment following their diagnostic confirmation).14 20 The sample size was determined based on the researcher’s information saturation, which was considered when no new idea or information emerged from the study participants.21 22

Data collection procedures

The interview guide consisted of two parts: sociodemographic characteristics of participants and the interview questions were used to guide the in-depth interview (online supplemental file 1). The interview guide was designed in a way to assess patients’ knowledge of the causes of cervical cancer, symptoms, screening, diagnosis and treatment; their lived experience from symptom recognition to diagnosis and receipt of standard treatments, and the challenges they faced in the pathway to diagnosis and treatment, their perceptions towards late diagnosis and its causes, and their suggestions to make an early diagnosis of cervical cancer. To ensure the reliability and validity of the guide, we conducted a pre-test of the guide on five patients with cervical cancer in TASH to refine the guide and check the consistency and appropriateness (sensitiveness) of the interview and probing questions. We also substantiated the content of the tool through a literature review and consultation with experts in the field and, most importantly, we designed the guide in a way to flexibly accommodate any new idea during the interview.

After selecting the participants and getting their consent, a face-to-face in-depth interview was conducted for each participant, privately in the nurses’ office. Data collection was conducted from 1 February 2018 to 30 June 2018. The primary author (ND) conducted the interviews. As this study was part of an embedded mixed methods study, audio recording of the interviews was not feasible. Participant responses to the interview questions were captured in writing as interview scripts. Interviews were conducted in Amharic, the national language, and took 45 min–1 hour. The role of the interviewer was to guide the interview by the interview guide and probe when elaboration was required. During the interview, notes of keywords and observable non-verbal nods and cues were taken in writing.

Trustworthiness and rigour

To ensure the trustworthiness of this study, we had prolonged engagement with the interviewees and checked the consistency of the collected data daily. Moreover, triangulation of the study findings was also considered by collecting data from two approaches (quantitative and qualitative). The findings of the quantitative part were reported in a previous publication.14 We also provided a detailed description of the findings, methods and settings, including descriptive quotes from participants.

Data management and analysis

Verbatim translation and transcription into a Microsoft Word file were carried out by the primary author (ND). ND read texts several times to become familiar with participants’ ideas, and reviewed key terms and their respective transcriptions to ensure a degree of standardisation. The final transcript was imported to Nvivo software to facilitate coding and analysis. Each sentence of the transcript was coded without compromising the central idea of the respondents. Codes were then compared based on their similarities and differences, and sorted into categories. Categories were then grouped into themes. Quotes that best described the various perspectives of the categories or themes were selected and presented in the text.

Patient and public involvement

Patients and the public were involved in the design and conduct of this study. During the design and conduct of this study, patients with diagnostic or treatment delays were approached and participated in the study by providing the necessary information on their cancer diagnosis and treatment journeys.

Results

A total of 40 in-depth interviews were conducted in the study. The age of participants ranged from 38 to 76 years. Most participants were married and literate (table 1).

Table 1

Participant characteristics

Barriers to early diagnosis of cervical cancer

Two broad themes and seven sub-themes to explain the barriers to early diagnosis and treatment of cervical cancer emerged. These themes and sub-themes included patient related barriers (inadequate knowledge, visits to traditional healers and practice of religious rituals as a solution for illness, poor adherence to the treatments and fear of side effects, and financial hardships) and provider related barriers (limited access to diagnostic and treatment infrastructure, inadequate training of healthcare providers and poor quality of care) (table 2).

Table 2

Themes and sub-themes that emerged to explain barriers to early diagnosis and treatment of cervical cancer in Addis Ababa, Ethiopia

Theme 1: patient-related barriersSub-theme 1.1: inadequate knowledge about cervical cancer

Inadequate knowledge about cervical cancer among patients and the general public was described by the interviewees. Patients described that they had never heard of cervical cancer before the diagnosis. The gap in knowledge of cervical cancer was associated with misinterpretation of symptom(s) as sunstroke or ‘Mitch’, a side effect of contraceptives, the start of the menopause, menstrual abnormality, sexually transmitted infection or urinary tract infection. For instance, patients described their situations as follows:

I thought the problem was due to side effects of contraceptives……that is why I delayed seeking healthcare. (Patient 3)

I was busy with household chores….when I noticed vaginal bleeding, I thought it was due to injury resulting from overburdened household work…and did not visit healthcare facility. (Patient 19)

Patients also explained that it was difficult to discuss the symptoms with other members of the family as it was related to their private parts, and they perceived that the symptoms would go away by themselves.

I feel ashamed to disclose to my family that I have bleeding…as it is not something that you can be comfortable to tell… (Patient 10)

Other patients who thought that the symptoms might be related to cancer have explained that they fear being diagnosed as having cancer as cancer is perceived as a devastating, incurable disease and has no optimal conventional treatment.

Before my cancer diagnosis, I perceived that cancer is an incurable disease and was afraid to be diagnosed with cancer. But now I understand that it can be cured if detected and treated early. (Patient 9)

Sub-theme 1.2: seeking traditional alternatives as a solution for cure

Visiting traditional healers and performing religious rituals as a solution for cure were common among participants. They explicitly showed reliance on traditional healers’ medications and religious rituals, assuming it was better than conventional medical diagnosis and care. Patients perceived that their symptoms might be due to evil spirits and they performed religious rituals before they visited healthcare facilities. Other patients also visited traditional healers as they are easily accessible and trusted by the community. Patients who went to traditional healers were prescribed herbal medications to drink or chew, ointments/creams to apply to the vaginal mucosa and injectable traditional medicine. Those patients who practiced religious rituals used Tsebel (holy water) or church prayer (healing services).

I heard about a traditional healer from my neighbour who treats a similar health problem…I have tried a medication given by a traditional healer before I visited a health facility, but I did not see any improvement… (Patient 3)

…Yes, I believe in God and going to holy water (Tsebel) as a solution for my disease…. (Patient 14)

Patients also described a perception among the community that radiotherapy and chemotherapy treatments can have worse outcomes than the cancer itself. Because of these misconceptions, patients often went to traditional healers as a solution for their disease.

…I heard from my neighbour that there is a traditional healer, who can cure cervical cancer…I visited there and took herbal medication, but my health condition did not improve, rather worsened over time… (Patient 18)

…I have been on Tsebel (holy water) the last 3 months, and the intensity of the disease was somehow decreased…, but not totally cured and I came back to the hospital for follow-up… (Patient 21)

….nothing is being provided as a solution for my disease…my disease is worsening from time to time and I am losing hope and trust in my doctors (Patient 11)

Sub-theme 1.3: financial hardships to cover diagnosis, treatment and transportation expenses

Financial hardships to cover diagnosis, treatment and transportation expenses were noted as barriers to the early diagnosis and treatment of cervical cancer. Patients explained that they are from a low socioeconomic background and cannot afford to pay for diagnostic investigations and treatment services. Furthermore, many patients said that they had to borrow money or sell properties to meet the cost of treatment requested by the healthcare facilities before initiation of treatment, which took them an exceedingly long time. Moreover, patients also complained of multiple and repetitive diagnostic investigations (laboratory work) that threatened their ability to pay for cancer diagnosis.

… repeated investigative modalities are prescribed… The amount of money requested for several laboratory tests is too much…We cannot afford all…Government should consider this… (Patient 16)

…let me tell you truly. I sold my jewellery and household utensils (equipment) to cover my expenses… (Patient 11)

Nearly all of the patients approached described their financial difficulties in covering their medications and transportation. Even those patients who were entitled to free medical services also described the financial difficulties they experienced during cancer treatment. Some patients disclosed a severe form of financial hardship (financial toxicity) during their course of treatment, such as selling their jewellery, cars and household equipment to cover medical expenses.

I received radiotherapy in the private wing, by paying out-of-pocket money. I am not capable of paying money, but I also want to cure from the disease. However, those patients who can’t afford to pay in the private wing should also receive prompt treatment. (Patient 8)

…My financial capacity is not good enough to follow-up with all the investigations being done and the treatment provided…I am even challenged to pay for my transportation to come to the hospital… (Patient 11)

Theme 2: provider and health system related barriersSub-theme 2.1: limited diagnostic and treatment facilities

Patients described that they often presented to the primary healthcare level facilities to seek diagnosis and treatment of their disease. However, primary healthcare level facilities lack important diagnostic modalities (equipment) and an appropriate healthcare workforce.

Doctors should diagnose our disease as quickly as possible. There should be machines and equipment to support this….They have to know what kind of problems we may encounter as per our age. I am 55 years old and I visited a healthcare facility with vaginal bleeding, but the doctor said ‘the vaginal bleeding is due to menopause and will stop by itself'. However, the disease has worsened from that time. (Patient 12)

Moreover, patients have described that the treatment modalities were very limited. There was only one radiotherapy machine rendering services for all of the cancer patients at the time of this study. Access to chemotherapy was also limited. Because of limited access to radiotherapy and chemotherapy, patients said that they were being forced to wait for a long period to receive treatments while suffering from the disease. One patient regrettably described the cancer treatment situation as follows:

It has been about 8 months since I came to the cancer centre and booked for the radiotherapy….nothing has been given to me yet….I am suffering by the disease….government should solve this problem… (Patient 15)

Radiotherapy treatment should be expanded….Since radiotherapy is prescribed for almost all patients with cervical disease, the waiting time to receive the treatment is too long. However, the disease is so painful to wait for a longer time. (Patient 5)

Sub-theme 2.2: delays in referrals in the healthcare systems

Patients with cervical cancer in Addis Ababa had misdiagnoses, and unnecessary long consultations and referrals. Patients explained that multiple investigations and unnecessary and uncoordinated referrals made them visit multiple healthcare facilities before the diagnosis of cervical cancer. Whenever they visited different healthcare facilities, the investigations that were done in the previous facilities were often repeated, incurring unnecessary expenses. For instance, patients described the situation as follows:

I went first to a nearby health centre….then they said the problem is related to the menstrual cycle and gave me a medication that I took for a month…but, without any improvement. (Patient 16)

I visited multiple healthcare facilities before I received a final diagnosis of cervical cancer in St Paul Hospital. I went to a nearby private clinic after I noticed foul-smelling excessive vaginal discharge, and they told me that it was a sexually transmitted infection….and gave me medications, but I did not see any improvements in my health…. (Patient 13)

Sub-theme 2.3: poor quality of care

Patients' reflections on the quality of care they received from healthcare providers were mixed. Some of the patients who were followed up in the oncology unit of TASH revealed their disappointment with the quality of care in the centre, while others were thankful for the care they received. The patients who reflected disappointment on the quality of care pointed out that the healthcare provider’s interaction with them was poor and some of the care providers did not communicate well about their worries and did not reassure them. For instance, patients who were followed up at TASH described the following:

Since we are suffering very much from the disease, healthcare providers (starting from the patient record room) should treat us with respect. They should not be annoyed with us. (Patient 12)

Counselling should be provided for cancer patients. We are in a depressed mood. Even when we come for treatment, the settings are not comfortable….caregivers have to serve us with respect… (Patient 11)

I am grateful to the healthcare providers who handled me very well. I am feeling better now… (Patient 18)

Sub-theme 2.4: treatment experience and intolerance

Patients with cervical cancer perceived that the treatments (chemotherapy and radiotherapy) had toxic effects on the body and could cause other severe complications. Thus their compliance (adherence) to the treatments might be compromised.

The disease is so painful. The severity of the pain has increased after I received radiotherapy. It is better not to give radiotherapy if the pain is worsening following radiotherapy. (Patient 14)

…they also referred me to Tikur Ambessa Hospital (TASH) for radiotherapy and chemotherapy. However, the treatment I received has affected my gastric and I am no longer tolerating it…it is a terrible experience…. (Patient 21)

Discussion

In this study, we explored patient and provider related barriers that are having pivotal roles in hindering early diagnosis and treatment of cervical cancer in Ethiopia. We found that lack of awareness about cervical cancer symptoms and available treatments, the perception that cervical cancer is incurable, and practicing religious rituals and visiting traditional healers as a solution for their disease were predominant among patients with cervical cancer in Addis Ababa. Financial hardships to cover cancer diagnosis and treatment, lack of diagnostic and treatment facilities, such as pathology service, radiotherapy service and oncologic surgery, and lack of quality services in the healthcare facilities were also barriers to the early diagnosis and treatment of cervical cancer. These findings are consistent with previous studies conducted in Ethiopia and other parts of sub-Saharan Africa.15 23 24 It is important to note that early detection and treatment of cervical cancer is the most feasible and effective approach for optimal outcomes for patients.11 13 25 When there is a delay in the diagnosis and treatment of cervical cancer, the disease will progress to advanced stages, where the option of treatment is limited and costly and the probability of survival is poor.25 26

Consistently, participants in this study reflected that cervical cancer is an incurable disease that is associated with a bad fate. Moreover, patients perceived that taking radiotherapy or chemotherapy would harm their bodies and subsequently kill them. Myths and misunderstandings about the diagnosis, treatment and prognosis of cancer are common in LMICs.27 28 These myths and misunderstandings might be due to the low level of health literacy in the general population of the country.29 30 Health literacy of patients might determine their ability to interpret, filter, judge and evaluate information related to cervical cancer diagnosis and treatment.29 30 This findings of the study have implications for clinical and public health practices. Patients who perceive that cervical cancer is incurable may turn to traditional medicine rather than conventional medical care. Even if they seek conventional medical care, they may feel hopeless and lack the courage to comply with the treatments. Thus it is imperative to consider a holistic care approach—providing psychological, emotional and spiritual care in addition to conventional medical care.31 32

Moreover, patients with cervical cancer had predominant beliefs of considering the symptom as ‘Mitch’ (sunstroke) or a side effect of contraceptive use, or as a problem related to the urinary tract or kidney infection. Abnormal vaginal bleeding was the most common symptom of cervical cancer and yet misinterpreted by patients.14 33 Consequently, patients did not seek healthcare immediately after symptom recognition; rather they practised religious rituals or visited traditional healers as a solution for their disease. Consistent with our study findings, seeking healthcare from traditional healers rather than conventional medical care was indicated to be a common practice in Ethiopia and other sub-Saharan African countries.15 34 35 It was also common for patients to seek prayer or use holy water (Tsebel) as a remedy for their illnesses before turning to conventional medicine.15 36 As a result, most patients with cervical cancer were diagnosed at an advanced stage of the disease in Ethiopia.16 A study conducted in Addis Ababa found that >80% of patients who practised religious activities immediately after symptom recognition were found to be diagnosed with an advanced stage of cervical cancer.16

Our study participants said that they had borrowed money from their neighbours/relatives, or sold their house, car, jewellery or household utensils to cover their cancer care expenses. Financial hardships are known to be a barrier to accessing healthcare for the diagnosis and optimal treatment of cervical cancer, leading to cancer progression, poor quality of life and poor outcomes.37 Consistent with our findings, in Ethiopia and other low income countries, patients with cervical cancer are mainly from lower socioeconomic status backgrounds and are unable to pay for their cancer diagnosis and care.14 38 39 This, coupled with the highly expensive and unavailable therapies, put patients in catastrophic financial difficulty. A study report by Bouberhan et al stated that women with financial hardship were seven times more likely to delay or avoid their cancer care.40 In concordance with the recommendations of the American Society of Clinical Oncology, oncology service providers need to consider discussing the affordability and availability of diagnostic and treatment resources and potential financial hardships for patients and their family members.41 It is also important to incorporate the provision of free diagnostic and treatment services to women with cervical cancer into the government’s strategy for cervical cancer prevention and care.

Consistent with previous studies, our study indicated that the cervical cancer diagnostic and treatment infrastructure and health workforce were highly limited.5 42 Patients who even sought healthcare immediately after symptom recognition had to wait a long time for a diagnosis of cervical cancer, leading to an advanced stage diagnosis of cervical cancer.14 16 Moreover, the limited availability of radiotherapy was one of the prominent barriers to the early treatment of cervical cancer in Addis Ababa. As most patients with cervical cancer are diagnosed with an advanced stage of cancer in Ethiopia,16 radiotherapy is the recommended and effective treatment option, mainly for palliative intent.43 However, there was only one radiotherapy machine until the past year (2022), providing service for all radiotherapy receiving cancer patients in Ethiopia, which is far from the WHO standard.44 Hence every patient who is indicated for receipt of radiotherapy should be registered in the oncology unit and wait for an unacceptably long time. Consequently, cervical cancer progresses to a more advanced stage of the disease and causes potentially avoidable premature death.12 25 26 45 As women die of the disease in their earlier productive ages, the social burden resulting from loss of women could be substantial to family members and society at large. These findings underscore the need to make concerted efforts to scale up radiotherapy services in Ethiopia.

As well as the limited availability of the treatment infrastructure and health workforce, participants complained about the quality of services provided in the oncology unit. This was partly due to patients’ disappointment because of long treatment waiting times, suffering due to the cancer pain and predominant feelings of hopelessness and depression. This finding underscores the need for the reinforcement of palliative care, including pain management and psychosocial support, as part of the clinical care of patients with cervical cancer in the hospital. Partly, the poor quality of cancer care by the healthcare providers was due to the overwhelming number of cancer patients in the oncology unit, which might have led to poor communication approaches (eg, disrespectful communication, unclear messages and procedures). Poor quality of care has a substantial impact on the treatment outcomes and prognosis of patients.46 Therefore, it is paramount to give adequate emphasis to enhancing the quality of care in the oncology unit through active engagement of the patients.47

Our study had strengths and limitations. The study was based on a qualitative in-depth interview of patients, which may provide a better opportunity to understand contextual barriers to the early diagnosis and treatment of cervical cancer in Ethiopia. We included patients with diagnostic or treatment delays to explore rich information on barriers to early diagnosis and treatment of cervical cancer in Addis Ababa. However, including newly diagnosed patients might have partly limited the richness of information on the lived experience of the participants. To reduce this, however, we included those women with diagnostic delays (who stayed for >90 days after symptom recognition to receive cervical cancer diagnosis) or treatment delays (who waited >120 days after diagnostic confirmation to initiate treatment). Moreover, we triangulated our qualitative data with previous quantitative data published elsewhere.14

The study had some limitations. The social desirability bias may have unconsciously biased the women while explaining their experiences. The possibility of unintentional researcher bias during the interview of participants and analysis of the findings might have unconsciously affected the interpretation of this study. Some participants might have had limitations in articulating their experiences due to health literacy levels or age factors. We were unable to audio record the interview due to the design of this study, which might have affected the strength of our analysis. However, we captured the participant responses in a comprehensive note, including their non-verbal reactions, nods and cues.

Conclusions

This study revealed barriers to diagnosis and treatment of cervical cancer in Addis Ababa, such as a lack of awareness about cervical cancer symptoms and available treatments, practice of religious rituals and visiting traditional healers as a solution for their disease, financial hardships to cover cancer diagnosis and treatment expenses, lack of diagnostic and treatment facilities, and lack of quality services in healthcare facilities. The findings of the study underscore the need to enhance awareness among patients and the community, ensure affordability and availability of treatments, scale up the screening, diagnostic and treatment infrastructure, and advocate for holistic cancer care in the healthcare facilities in Ethiopia to promote early diagnosis and treatment of cervical cancer. Further studies to assess the impact of delayed diagnosis and treatment on the outcomes of patients might be required.

Data availability statement

All data relevant to the study are included in the article or uploaded as supplementary information. All the data are included in the manuscript and supporting information.

Ethics statementsPatient consent for publication

Not applicable.

Ethics approval

Ethical clearance was obtained from the institutional review board (IRB) of Addis Ababa University, College of Health Sciences (No 005/19/SPH). Eligible patients were informed about the purpose of the study, and they provided written consent to participate in the study. Informed consent was obtained in the Amharic language (local language). The administrative permission to conduct this study was provided by the oncology department of the hospital. All documents were kept private and confidential.

Acknowledgments

The authors thank the American Cancer Society and Addis Ababa University for the support provided to conduct this study. We acknowledge the financial support of the Open Access Publication Fund of the Martin-Luther-University Halle-Wittenberg. The authors are also grateful to the study participants for their participation in the study.