This explanatory qualitative case study (19–21) examined patients’ perceptions of PC services in Tanzania.

The study was conducted in five tertiary hospitals that are capable of managing and caring for PC in Tanzania. These are Ocean Road Cancer Institute (ORCI) and Muhimbili National Hospital (MNH) in the Eastern zone, Mbeya Zonal Referral Hospital (MZRH) in the Southern Highlands, Kilimanjaro Christian Medical Center (KCMC) in the Northeastern zone, and Bugando Medical Center (BMC) in the Lake zone. Three tertiary hospitals (MNH, ORCI, and MZRH) are public facilities, while KCMC and BMC are owned by faith-based organizations. They all receive patients referred from lower-level facilities and have different payment mechanisms including health insurance, out-of-pocket payment, or patients’ exemption by policy. These facilities can provide oncology and urology services (22, 23).

Patients with PC who have been on treatment for not less than 6 months were eligible to participate in this study. A purposive sampling strategy was used to select PC patients who had consented to participate.

Semi-structured interview guides were developed in English and translated to Swahili for in-depth interviews (IDIs) regarding the patient’s perception of PC services and experience of the treatment pathway. The interview guides were reviewed and pretested through a consultative process involving experts in qualitative research. The research team consisted of five experienced health professionals including a urologist who has been attending patients with PC with little knowledge of qualitative research, a medical doctor, two nurses, and one public health specialist with experience in conducting qualitative studies. The research team was trained on the study objectives and ethics so that prior assumptions and beliefs could not influence the perception or interpretation of findings.

The data were collected in November 2023. IDIs lasted approximately 15–30 min each and were conducted by the first author assisted by one experienced qualitative research assistant. The interviews were conducted in Kiswahili, a common language spoken by a majority of Tanzanians.

Patients with PC were recruited for IDIs purposefully based on the willingness to participate in the study and also the duration of treatment for PC. Nurses and urologists/oncologists working at urology or oncology clinics of the respective hospitals were informed by hospital administration about the study. The research team explained the purpose of the study and requested for the required support from participants based on the inclusion criteria. Recruitment of study participants was interactive based on the schedule of clinics in which the clinic staff could call the research team upon receiving the patients who meet study criteria taking into consideration the participants’ values.

They were conducted in consultation rooms within the urological or oncology outpatient clinics. We used a digital audio recorder for the interviews after obtaining informed consent. Moderation and field notes were taken by the principal investigator and one member of the research team.

We used verbatim transcription of the IDIs before coding. The transcripts were translated from Swahili to English. For data security, we converted recorded information into a code using a free tool for encryption to prevent unauthorized access, protected with a password, and stored in a locked cabinet before and after analysis. Only the principal investigator and one research assistant had access to the data. Participants and the five tertiary hospitals were assigned numbers for anonymity. Participants from each hospital were given a range of numbers.

We adopted the six stages of thematic analysis employing both deductive and inductive approaches (24–26). A line-by-line coding of the interviews was done to assist the ownership of the data including making sense of patterns, connections, and the bigger picture from the data by the principal investigator. Quality check was done by one research assistant who is a nurse specialist experienced in qualitative research (27). Further analysis involved collapsing multiple codes that share a similar underlying concept or feature of the data into one single code (25). A code that turned out to be representative of an overarching narrative within the data was promoted to a sub-theme or even a theme. We used NVivo 14 software in the analysis to generate codes, sub-themes, and themes.

Four themes emerged as a result of responding to questions regarding the understanding, perception, and real experience of PC patients. They were linked to causes of late presentation for PC care, namely, perception of PC, delays of care, perception of quality of life after treatment, and quality of service for PC at tertiary hospitals in Tanzania ( Table 2 ).

Participants were living with PC as part of aging because they perceived it as a disease of elderly people, and they were waiting to die because they knew cancer had no cure. Expectedly, the perception that PC is caused by witchcraft was reported. As a result, patients were treated by traditional healers before seeking hospital care, causing a further delay in receiving effective treatment. Some patients thought that PC is caused by indulging in promiscuity. These perceptions favored self-stigma from the community and late presentation to hospitals. The quotes below reflect the patients’ perception of possible causes of PC.

Prostate cancer is a disease of elderly men.

There is no cure for prostate cancer.

Traditional healers can treat prostate cancer.

Prostate cancer is a sexually transmitted disease.

When asked about what they perceive as the best method for the diagnosis of PC, most of the participants were afraid of going to the hospital because they knew the finger would be inserted into their rectum for diagnosis of PC [digital rectal examination (DRE)]. After probing into the reasons, it was revealed that the digital rectal test is perceived to devalue the sense of manhood. Moreover, patients did not accept the DRE mostly due to self- or community stigma. Participants had a perception that once the community knew they went to the hospital for PC treatment, they would be labeled as hopeless men. Most participants reported preferring prostate-specific antigen (blood test) for the diagnosis of PC. Participants did not understand the concept of complementarity of the two tests to increase sensitivity and specificity. Participants are also worried about getting the results of cancer:

DRE is not accepted.

We received mixed opinions related to quality of life after treatment for PC as supported by different quotes from participants. Some participants reported improvement after treatment. Participants who accepted the diagnosis and treatment sounded to report better improvement regardless of the stage of disease or the type of treatment. Participants were relieved from symptoms after treatment, and this made them have a positive perception of the treatment outcome:

Quality of life improves after treatment for prostate cancer.

Participants reported fear of treatment for PC because they were worried about the side effects. Some participants thought they could die immediately after surgery because cancer is not supposed to be operated on. The type of treatment was reported to devalue the participant’s quality of life especially loss of libido after treatment. Divorce was reported by participants to be linked to treatment for PC, which is accompanied by reduced sexual function. This reflects a lack of sexual partner support for good treatment outcomes. Couple counseling though was not part of the finding, but here, the need cannot be underestimated.

Treatment for prostate cancer can propagate divorce.

Participants had negative perceptions of radiotherapy and surgery for PC. This explains the loss of follow-up after prostate diagnosis due to an unwillingness to start treatment. Participant’s reticence about what is perceived by the community made them very reluctant to radiotherapy and/or surgery for PC. Participants had a certain reticence about radiotherapy and/or surgery because they were afraid that they would die early.

Negative perception on the treatment options for prostate cancer.

The occupation of participants was reported to positively influence the acceptance of treatment; one patient reported that it was easy for him to accept treatment because he is a medical doctor by profession. Couple counseling for the treatment of PC helped the acceptance of treatment, especially in those patients who are below 65 years of age.

Proper counseling is important.

The three causes of delays for PC were reported at different dimensions. Participants reported difficulties in healthcare seeking because hospitals with specialists are far from them, implying that there is a lack of physical access to healthcare for PC. Some participants as mentioned earlier were reluctant to seek hospital care due to negative perceptions of methods of diagnosis and treatment for PC. They further insisted that, in acute conditions, they have difficulty reaching the hospitals and they use traditional healers because they are nearby.

Use of traditional medicines causes delays of seeking hospital care for prostate cancer.

Some patients were reported to have died in villages before they sought hospital care specifically those who were not insured because of financial difficulties (lack of access due to poor affordability). PC is a disease of men, and participants are too shy to tell their children especially their daughters that urine is not coming out. Insurance was reported to cover the cost of PC. Participants suggested insurance be given to all people including those in villages. This was perceived to increase the utilization of hospital services at the early stage of PC for better treatment outcomes.

Treatment for prostate cancer is expensive.

Participants reported delays in receiving services due to staff shortage. Staff are working for long hours, which might reduce their efficiency. Biopsy results were delayed, which increased the anxiety of patients while waiting for their results. Patients explained that the delay in receiving services was sometimes due to a shortage of staff and limited machines. Some patients experienced delay in receiving care and died before treatment due to a long waiting list

Study participants expressed their mixed opinions on the quality of services for PC. Healthcare providers (HCPs) were mentioned as key players in providing quality service through interaction. Some participants reported receiving good support from HCPs that made them feel loved. Good communication and health education were reported by participants to be important for psychosocial support even if there are no formal counseling sessions for PC.

Good interaction.

The study participants did not appreciate the organization of the health system for the provision of PC. PC services were fragmented because tertiary hospitals did not provide comprehensive care for PC. This was reported to cause delays in care and increased cost of treatment. Participants reported a delay in getting services due to an uncoordinated referral system. The health information management system (HIMS) was not integrated. PC services were reported to be centralized at zonal hospitals, but still, they are not patient-centered in service provision.

Lack of patient centered services.