Original Research

Healthcare workers, caregivers and patients’ insights into the cancer care journey in Lesotho

Motšelisi C. Mokhethi, Molungoa Sello, Maseabata Ramathebane, Mopa Sooro, Lineo Maja, Kabelo Mputsoe

Received: 13 Mar. 2025; Accepted: 06 Aug. 2025; Published: 08 Oct. 2025

Copyright: © 2025. The Authors. Licensee: AOSIS.
This work is licensed under the Creative Commons Attribution 4.0 International (CC BY 4.0) license (https://creativecommons.org/licenses/by/4.0/).

Abstract

Background: Global fear surrounding a cancer diagnosis persists. Recent advances in the medical diagnosis and treatment of cancer have influenced cancer survival rates. The quality of health care service to attain and sustain survival is receiving research attention. Patients’ experience of cancer care is one of the important evaluation attributes of quality health care.

Aim: The aim was to reveal patients’ and caregivers’ insights as well as healthcare professionals views regarding patients’ cancer care experience in Lesotho.

Setting: The study was undertaken at Senkatana Center of Excellence Oncology Clinic in Lesotho.

Methods: A qualitative study used the focus groups method for data collection and content analysis for data analysis.

Results: The study had revealed that the patients’ cancer care journey is challenging. The journey is characterised by unsatisfactory quality of health care service in health centres, the slow referral process, and limited patients’ knowledge constraining smooth care process. Moreover, financial challenges and inefficient support services were found to affect the quality of health care.

Conclusion: The role played by the human element in the delivery of quality cancer care has been highlighted. It is recommended that comprehensive cancer training for healthcare workers in the country be provided. Furthermore, cancer services should be distributed across various districts in the country in order to minimise challenges facing patients.

Contribution: The study has identified the cancer care service gap from primary care level, oncology centre and in the process of the foreign referral of the patients.

Keywords: patients’ experience; quality of health care; health care workers; cancer care; care giver; cancer care journey; patients’ insights.

Introduction

Cancer diagnosis remains one of the scariecst diagnoses worldwide and is perceived as equivalent to death by most patients.¹ In many countries, cancer remains the leading cause of death, to a certain degree, because of a decline in mortality rates as a result of cardiovascular diseases.² Patients face huge challenges in their cancer care journey.³ In many low- to middle-income countries (LMICs), most cancer patients face financial difficulties, which is the main barrier to access oncology care in these countries.⁴ Predominantly cancer is associated with suffering.¹ Cancer survivors, reporting a radical change in their family and social relations after diagnosis, have difficulty with emotional stress, sleep disorders, physical health problems, financial hardships, and fear of cancer recurrence.^5,6 In addition, cancer survivors have criticised the inadequate quality of health services.^7,8

One of the studies pointed out dilapidated health care facilities, traditional beliefs, and misconceptions in families and the community that constrain the provision of quality cancer care service, all combined signalling a need to improve the quality of cancer care.³ Studies have further revealed that patients living in rural areas or far from cancer treatment centres face more significant challenges than those in urban areas when accessing cancer care.⁹ It should be noted that human elements are more important than non-human factors in patients’ perceptions regarding quality of care.¹⁰

Recent advances in the medical diagnoses and treatment of cancer have influenced cancer survival rates.¹¹ However, low- and middle-income countries face huge challenges in supporting patients with cancer, as cancer centres are few.³ Further, patients that go through multiple consultations prior to referral tend to report negative experiences with cancer care.¹² In Lesotho, there is only one oncology clinic and patients have to go through primary care prior to referral to Senkatana Oncology Clinic.¹³ There are likely challenges to result from one oncology clinic in the country that is also accessed through referral from primary care centres. The underlying factors that precisely inform the quality of cancer care for patients in Lesotho are mostly unidentified.¹⁴ The current study intends to explore and uncover the factors that influence the quality of cancer care by examining patients’ experience of their cancer care journey and insights of caregivers as well as health professionals as service quality cannot be assessed from patients’ perspectives alone.^3,10,15 In fact, caring for a patient affects not only the patient, but also the family, the cancer care team and staff involved in the care process.³

Methods

Study design

Two qualitative focus group discussions were conducted. One group consisted of healthcare workers and the other comprised cancer patients and a caregiver. The caregiver was included in the patients’ group to ensure necessary support of the patient taken care of. Also, a one-person group would not meet the minimum size of a focus group.¹⁶ Two researchers conducted the focus group discussions using semi-structured questions, and follow-up questions were guided by the responses of participants.

A focus group was used because it facilitates interaction of participants, consequently shaping the opinions of members as they listen to each other.¹⁷ The interactions of participants offer the extent of consensus and diversity among participants.¹⁸ The method was useful for this exploratory study, as it will provide insights, not generalisations about the phenomenon.¹⁸

Study site

The study was conducted at the Senkatana Oncology Clinic at the Botshabelo complex in Maseru. Patients come from all over the country to Senkatana Oncology Clinic for care, treatment, through referral once diagnosed with cancer.

Study population

Convenience sampling was employed. On the day and time the centre allowed researchers on-site, patients, caregivers and healthcare workers available and giving signed consent were included in the focus groups. Four cancer patients, one caregiver and four healthcare workers on site gave consent.

Data gathering process

Focus group discussions were conducted in Sesotho for patients and the caregiver and in English for healthcare professionals. Discussions were recorded using an electronic device where consent was obtained. The study collected data from different sources for triangulation;¹⁹ however, the limitation of the amount of data from only two groups is acknowledged.

Data analysis

The researchers who collected data translated the discussion from the local language to English. Thematic content analysis was undertaken by researchers individually guided by literature.¹² The researchers made inferences based on the patterns.²⁰ The four themes which were identified include the quality of healthcare centre where service is obtained, the quality of the process of referral, the quality of exposure and knowledge of cancer, and the quality of the support services.

Ethical considerations

The focus group discussions were held as part of a larger study, where ethical approval was granted by the Lesotho Ministry of Health, National Research and Ethics Committee (NHREC) (reference number: ID 04-2023). Permission to conduct the study was also sought from the study centre, which is Senkatana Centre of Excellence (CoE) Oncology Clinic. All procedures such as questions used in the study were approved by the ethics committee. The informed consent forms (ICFs) were filled out by patients who were interviewed. Data collectors and researchers also ensured confidentiality throughout the research process. Data recordings are kept safely where there is restricted access, and transcribed data are associated with codes that cannot be linked to the participants and are still secured in a password-protected file.

Results

Demographic characteristics

Table 1 reflects the demographic characteristics of participants comprising of four patients, one caregiver and four healthcare workers.

Themes of the study

Patient experience refers to any visible process, both subjective and objective, that mirrors a set of elements of care from the patient’s perspective.¹¹ A review of quantitative studies documented how patients’ experiences may vary with a number of factors such as primary care, disease prognosis, socioeconomic status, health provider communication, sex, age and ethnicity, among others.¹²

A scoping review, on the other hand, identified the key components of cancer patient experiences.¹¹ The key components are patient-provider communication, care coordination, access to care, and patients’ perceptions of care quality. The review identified, among others, a gap in understanding how patients describe care quality. The insights from this study will focus on how the patients define cancer care quality.

The following themes describe how respondents view the quality of cancer care they receive in Lesotho. The quality of care is identified through the care journey they go through, translating into four themes, namely, the quality of healthcare centre where service is obtained, the quality of the process of referral, the quality of exposure and knowledge of cancer, and the quality of the support services.

The quality of health care centres where service is obtained

The perceived quality of healthcare services provided by some healthcare centres in Lesotho especially with regard to the human element was considered unsatisfactory. One patient indicated that:

‘[H]ealthcare workers seemed to have limited diagnostic knowledge with regard to cancer and were not bothered to make laboratory tests to ensure a proper diagnosis.’ (P1)

There were contradictory opinions regarding this as one of the respondents indicated that they have had good experience in the different health centres in the country inclusive of Senkatana CoE. The respondent had this to say:

‘I started at facility one, and then was referred to the second one and progressed to the third one until being referred to Senkatana CoE. In all these facilities I have been receiving good service. Even here at Senkatana CoE I am still getting a good service with regard to cancer.’ (P2)

The quality of the core services at Senkatana CoE was considered good, but respondents pointed out weaknesses at Senkatana CoE regarding the support services (laboratory, imaging, etc.) due to their complete absence. As a result, the patients go to various places to access the services, often resulting in delayed medical intervention. The caregiver indicated that travelling to seek care from one provider to the other was challenging especially for the patients. She indicated that:

‘… At some point they [patients] won’t even be able to walk, we then have to walk again to other areas to get support services, that’s the hardest thing.’ (CG1)

One of the health workers, in support of the care giver indicated that:

‘[T]here is need for one-stop-service for patients, right now they have to go to Queen II to go and pay after being served here and that is cost for the patient.’ (HW4)

The healthcare workers were also concerned about poor conditions of the accomodation facility that patients use when they return from their check-ups from a foreign country.

‘[T]here is no nurse at the facility, patients take care of each other day and night, there are cases where they even share medication with a view that they are helping each other. Generally the Hostel Management is bad.’ (HW4)

‘[A]nother health professional indicated that Senkatana CoE should have some arrangement with mortuary services so that in case of loss of life the body can be kept safely unlike at present where the body remains with other patients until the next of kin are located to make arrangements.’ ‘In her view this traumatizes staff and patients.’ (HW4)

Another patient had a negative perception of cancer services attained from outside the country as follows:

‘When we enter the facility from Lesotho, you will see from the facial expressions that they are not happy.’ (P2)

One nurse even commented:

‘Oh!! that’s you!! you are overburdening us, we already have our own patients in our country and here you are bringing extra load.’ (P2)

According to the patient, around two to three ‘sprinters’ (a name referring to a vehicle with a capacity of 15–20 people) leave to the foreign country hospital for treatment at a time.

The quality of the process of referral

Patients reported a long process of diagnosis and referral. The opinion is that cancer sometimes takes longer to be diagnosed. Patients believe that healthcare workers in other hospitals in the country seem to be not equipped to diagnose cancer at the early stages. One of the patients recalls the journey she travelled for the diagnosis of cancer of the throat. The health worker had given her pills, having diagnosed the lump as tonsillitis and when there was no change, she returned and was referred to a referral hospital in the country. According to her, the healthcare workers were very sarcastic and said:

‘You seem to want to be operated, so we will refer you so that they perform an operation which you seem to want.’ (P3)

The referral hospital gave the same pills the prior hospital had given. As the health condition did not improve, she strongly requested a surgery to be performed, but had to wait for around 6 months. Finally, the surgery was conducted, but thereafter she came to know that the lump was discarded without sending it for biopsy. She requested that it be tested.

‘The nurse was sarcastic and said, “Oh!! You want to know what caused the tonsillitis, there is no problem, I will go fetch the lump and test it.” Are you aware they were not interested to find out? They did fetch it and sent it to the laboratory … When the results came back, they showed that the lump was cancerous. Imagine!! what would have happened because I would be content that it was operated and I am healed!! It is this negligent attitude of not being curious of what has caused a disease in the first place that I think is important to address.’ (P3)

Another patient also had a bad experience of delayed breast cancer treatment. She said she felt a lump when it was still very small and went to the nearby hospital in 2015. They performed a clinical breast examination and indicated that the lump did not have the characteristics of cancer. They further tested her for cervical cancer, received negative results, and were reassured that she had no cancer. The lump continued to grow, and 5 years later in 2021, the patient got concerned and went for another check-up, where she was found to have breast cancer.

It was acknowledged by healthcare workers that cancer is not an area of speciality for many practitioners; hence, they lack knowledge about cancer and may not be sensitive enough to respond to patients with symptoms suggestive of cancer, resulting in prolonged non-cancer targeted-interventions that cause delayed cancer diagnosis presenting at an advanced stage.

The primary care service providers do not communicate or provide enough information to patients. He says that:

‘When patients are transferred from district health centers sometimes they do not know why, what the doctors are suspecting, meaning we need cancer campaign/education in the country.’ (HW4)

The quality of exposure and knowledge of individuals about cancer

One of the patients in the focus group discussion reported that she could have been transferred for treatment much earlier, but she has been avoiding treatment herself, as she was frightened by friends when telling them about the diagnosis. She indicated that she panicked and decided not to go back to the hospital following diagnosis:

‘I actually fled from the country and went to [another country] to get another opinion. I got the same results … then I returned to Lesotho to get operated at home.’ (P1)

The patient was afraid to undergo the operation, as she felt she would not survive it. The patient decided to be operated on in hospitals in Lesotho so that she would ‘die at home’. She lamented that:

‘I nearly killed myself by denying myself treatment. I am okay now and ready … they “my friend” nearly killed me with their advice.’ (P1)

Healthcare workers attribute patients’ denial to the emotional trauma of the fear of cancer diagnosis because there is a lack of information in the communities regarding cancer. Health workers have this to say:

‘Patients are afraid of chemotherapy because of the stigma they hear from the community that people die from it [misconception].’ (HW4)

‘Most cancer patients come late for diagnose and there is still a dilemma that it is a death sentence for patients. When a patient is diagnosed he/she feels alone in the family and society.’ (HW3)

‘Some patients ask why me? Is God going to help them? How much time left to live?’ (HW2)

‘Consequently, patients in denial spend time using home remedies and present to the oncology clinic with an advanced disease state, sometimes beyond medical intervention.’ (HW4)

The quality of support services

One of the patients (P4) indicated that he has been undergoing cancer care treatment for a long period, as the cancer has been resurfacing. According to the patient, cancer care could be improved by addressing some logistical challenges such as transportation. The patient and healthcare workers are in agreement that the vehicle taking patients to a foreign hospital where they are referred leaves late, around 8:00 in the morning, and arrives at times when some patients’ appointments have passed. As a result of the delay in transportation, healthcare workers in that foreign hospital become furious and lose interest in them and reschedule them for appointments much later.

The caregiver had this to say:

‘As you know we are coming from far, so there is a big problem with the transport and lodging as we have to sleep over at Maseru to be served at Sankatana.’ (CG1)

Patients cannot afford the transport costs. They mentioned transport costs from the different areas to be unbearable:

‘I am from Quthing I get hit mostly by transport to come to Senkatana CoE Oncology Clinic, I am from very far.’ (P1)

Another patient residing about 34 km from Senkatana CoE Oncology Clinic is also complaining about transport costs because cancer care entails frequent check-ups at both Senkatana Oncology Clinic and outside the country:

‘After every two weeks, I have to go for some check-ups … I mean transport to come here … Senkatana CoE Oncology Clinic not even outside the country; one cannot afford the costs … worse when one has to go outside the country when there is need to pack food for the trip.’ (P2)

‘Transport costs is major, because for food one may eat simple porridge only and drink water before leaving home, as for transport, without it one cannot move and get to the clinic, and when we have missed a check-up it is very difficult to resume treatment for fear of how one is going to explain to healthcare workers and there is likelihood of giving up for good and possibly resorting to traditional cure which certainly will have worse effects.’ (P2)

Healthcare workers agree that transport is a major expense as cancer care demand frequent visits to health centres. Consequently, there is a high defaulter rate since a patient may first come with a district or regional facility ambulance from far away districts. When they have to come by themselves for check-ups, transport expenses become a problem, and they default. One of the health workers indicated that:

‘… my main concern is quality of life, people had to be taken care of emotionally, spiritually and physically. At the moment there is no total quality of life that we offer our patients. Some default as they are unable to pay for transport to Bloemfontein. Application to Ministry of Social Welfare take a long time and to get a grant takes forever and as patients miss their appointments when they later come the cancer has advanced, every 8 weeks the stage advances if untreated.’ (HW4)

Another health worker concurred that transport costs are a challenge. She indicates that:

‘[I]n fact I can say poverty of patients, people come from all districts and find it hard to come and go back to their homes … On some occasions staff members contribute to assist patients to return to their homes after they have been served. At times there could be some luck if an ambulance from the district to the clinic could coincide with the return of the patient.’ (HW1)

Financial challenges also affect the recommended diet that patients are advised to follow for better outcomes. As related by one patient:

‘The second issue is the challenge of food, we cannot afford to eat recommended type of food … because the type recommended, we cannot afford.’ (P1)

‘Buying food is also a problem. BIM is check at every visit and “Ensure” [some form of supplement] is provided if someone is below required BIM, but now it’s not available, patients cannot afford it as it is expensive to supplement their food, so you can see we are not coping.’ (HW4)

Healthcare workers further stated that diagnostic tests and other medical examinations are very expensive for most patients, and they cannot pay for these services. For example, an immunohistochemistry test and computed tomography (CT) scan cost a patient around M4000.00. A biopsy costs about M5300.00, and this hinders the continuity of care for patients who cannot afford to pay for such services (1 USD is equivalent to 19 Maloti).

Discussion

The study explored the patients’ cancer care experiences as a measure of the quality of cancer care from the perspective of patients, caregivers and health care workers. The patients’ experiences differ with regard to the capabilities of cancer care centres. The experience received at the primary level varies as some patients reported that they received satisfactory service. Those who reported unsatisfactory experience of cancer care at primary care level attribute the poor service to the limited diagnostic knowledge of health care workers who do not even make an effort to investigate the illness in depth. Further, the study revealed that health workers at the foreign facilities where patients are transferred to are not welcoming. Prior studies have shown satisfaction of patients to be attributable to healthcare workers’ qualities, knowledge, and good communication skills, including kindness, honesty, and a cheerful attitude. Staff’s interpersonal skills, attitude, and performance play a major role in influencing patients’ satisfaction.^21,22,23,24

The Senkatana Oncology clinic is criticised for limited support services. The patients have to move to various places to obtain a full cancer care service during their visit to the clinic. The results support prior studies, as they reflected that high-quality cancer services contribute to patients’ positive perception. According to Ashmore et al., the benefits of the One-Stop Clinic (OSC) approach to cancer include reduced anxiety related to awaiting results and time taken to diagnosis. At the same time, it shows improved patient satisfaction and throughput of patients in the pathway.²⁵

The process of referral takes too long because the health workers at primary care level are not skilled enough to notice symptoms suggestive of cancer. Also, there is poor communication between primary care level health workers and the patients as at times patients are transferred without being told what doctors suspect.

The results support Macleod et al.’s findings that determined that lags in patient presentation can be influenced by knowledge.²⁶ The study further confirmed that cancer remains the scariest diagnosis.¹ The results showed that cancer diagnosis created fear in patients as well as their friends and family, and fear contributed to delayed presentation. Some patients need time to believe, realise, and accept the diagnosis as they cling to the hope that the initial diagnosis was a mistake or misunderstanding.²⁷ Denial is a clinically relevant concept in cancer patients. In an explorative review by Vos and Haes, the prevalence of denial of diagnosis in cancer patients ranged from 4% to 47%.²⁸ As expected, denial of the patients in the study diminished over time, and the patients accepted starting treatment.²⁵ However, delays can irreparably break the patient–healthcare worker relationship at a time when medical support is most required.²⁶

Support services such as transportation are a challenge to patients.²⁹ Patients miss check-ups because sometimes they cannot afford transport costs. The transportation provided by Senkatana Oncology clinic to foreign facilities is not dependable, as it fails to meet scheduled appointment for some patients because it always leaves late from Lesotho. The delayed departure results in re-scheduling of some appointments that delays treatment.

Patients’ financial limitations are a constraint to meeting necessary cancer care expenses. The financial limitations of patients, in addition to failing to meet transport costs, hinder patients from meeting recommended diet and paying for diagnostics test. Winstead found that nearly three-quarters of 380 colorectal cancer patients enrolled in a study faced financial hardships 1 year after enrolment despite having medical insurance.³⁰ On average, cancer patients and caregivers in high-income countries (HICs) spent 16% of their annual income on out-of-pocket costs (OOPCs) related to cancer care, compared with 42% among those in LMICs.³¹ Patients with cancer experienced sharp increases in OOPCs compared with those without cancer.³²

Generally, the cancer care journey of patients is characterised by unpleasant experiences that most likely will have a negative effect on the health-related behaviours. The study has identified gaps in the quality of care that need to be filled in order to improve patients’ cancer care experience. What is important is the human element, that is, health care workers more than non-human factors in the provision of quality care rendered to patients.¹⁰

Implications of the study

The study has highlighted the need for cancer awareness among the public, decentralisation of cancer services to the district, counselling of cancer patients, and capacitating health workers to ease the cancer journey of patients in Lesotho. A follow-up study is necessary to determine whether gaps of quality care have been improved.

Recommendations

There is need for comprehensive cancer training for healthcare professionals. Distributing cancer services to various districts could minimise financial burden for patients.

Study limitations

It was not possible to get a larger population as the study was conducted during coronavirus disease 2019 (COVID-19) pandemic restrictions. Congestion was minimised as much as possible at the centre so it was not possible to gather many patients and health care workers. Senkatane Oncology clinic is an outpatient centre and most patients were still able to attend check-ups unaided hence why only one care giver was available to be part of the study.

Conclusion

The study discussed the cancer care journey in Lesotho from the perspective of healthcare workers, caregivers and patients. The journey is characterised by a long process of diagnosis and referral caused by both patient and providers, limited cancer knowledge by patients and weak cancer care systems. The study highlighted a need for training of health workers and patients and the need to capacitate all cancer care providers in the country. The scary cancer care journey need not be compounded by additional challenges and there is need to expand cancer care facilities in the country as that will minimise too much travel for patients and reduce the financial burden on them.

Acknowledgements

The contribution of Dr Pearl Ntsekhe, Ms Malerotholi Tlebere, Ms Atang Masilo, Mr Leutsoa Matsoso and Mr Tlebere Mpo is highly appreciated. Cancer patients, research assistants, and general staff members at Senkatana CoE Oncology Clinic, your participation in the study cannot go unnoticed.

The authors declare that they have no financial or personal relationships that may have inappropriately influenced the writing of this article.

M.R. was the principal investigator (PI), and prepared the background of the article. The contribution of co-principal investigators varies as follows: L.M. worked on the literature; M.S. was involved in data cleaning and data analysis; M.A.S. was involved in the discussion, while M.C.M. wrote the original draft and ensured that the article’s organisation was in line with the journal requirements. K.M. was responsible for ensuring that the article’s cancer facts are correct.

The study was funded by a grant from Bristol Myers Squibb Foundation – Global Cancer Disparities (Africa) provided to Dr Maseabata Ramathebane at National University of Lesotho. The funders did not have a direct role in the design of the study or the collection, analysis or interpretation of the data.

The data that support the findings of this study are available on request from the corresponding author, M.C.M. The data are not publicly available because they contain information that may compromise the privacy of research participants.

The views and opinions expressed in this article are those of the authors and are the product of professional research. They do not necessarily reflect the official policy or position of any affiliated institution, funder, agency or that of the publisher. The authors are responsible for this article’s results, findings and content.

References