Results

Characteristics of the IDI  participants
The age of the IDI participants ranged from 58 to 78 years. The majority,7/9 participants had attained at least a secondary-level education. Most participants were married, while two were widowed. Additionally, the majority were diagnosed at advanced cancer stages (III and IV) of prostate cancer (Table 1).

Characteristics of KII participants
A total of six health workers participated in the KIIs. Their ages ranged from 31 to 54 years. The majority were female (4/6), and most had attained a bachelor’s degree or higher. All the KIIs had at least six months of experience managing prostate cancer patients at UCI (Table 2). The study findings are presented in four thematic areas, namely: Identification of signs and symptoms, initial care sought, access to treatment and perceived barriers.

Identification of signs and symptoms
Generally, most patients did not understand the initial symptoms of the disease. Most of the early symptoms were confused with other illnesses, such as lower urinary tract infections that mimicked the symptoms of prostate cancer.

“Before I knew what it was, I thought it was just a urinary infection because I kept feeling like I needed to urinate, but only a little would come out, and sometimes it just stopped completely. I even tried taking some herbs, but they did not work”. (IDI, Man aged 71 years).

Additionally, some patients did not differentiate the prostate cancer signs and symptoms from other pains experienced in their daily activities, as expressed by one of the study participants.

“… because I was a great sportsman, whenever I would feel back pain, I never took it seriously because I used to think it was a result of overstretching my muscles. So, I never went to any hospital; I would just massage myselfwith hot water. (IDI; man aged 68).

The majority of the study participants expressed a fear of stigma, which prevented even those who noticed abnormal changes in their bodies from seeking care. Many feared being judged by their communities and preferred to keep their illness private.

“The community doesn’t know that I have prostate cancer; only my wife and some of my children do. You know, some people are not good. If you tell them, they start saying, ‘Ah, this one is suffering from cancer.’ That’s why I decided to keep it to myself. (IDI, Man aged 60 years)

Furthermore, some participants also felt uncomfortable being examined by young female doctors. One participant revealed that some of his colleagues would choose to return home upon encountering female health workers due to fear of being attended to by young female doctors.

“Mutabani [meaning my son], some of these diagnostic tests they do here are so embarrassing. You find a young female doctor like the one who worked on me the other time, squeezing your private parts to test you; this makes you feel so uncomfortable. Actually, some old man went back home the other day because he feared to be seen by that young girl [referring to the female doctor]”. (IDI, Man aged 78 years).

More than three-quarters of the KIIs further revealed that most men do not undergo regular medical checkups, making it difficult for them to recognize the cause of their symptoms early. As a result, many initially relied on traditional herbs and only sought medical care when their condition had become critical.

“…the problem is that most men have poor health-seeking behavior because they get a problem and never mind going to the hospital for a checkup, so this means that by the time they come here, they are badly off. Some of them come when they can’t even walk, and by this time, the disease has advanced to other body organs, so at this time, it’s already too late”. (KI, Nurse).

Initial care sought
Most patients preferred traditional methods for treatment, such as local herbs and prayers, in the initial stages of the disease. They spent the majority of their time using these herbs. They only sought care from the hospital when the herbs couldn’t work anymore, and they were experiencing intolerable pain. More than half of the patients interviewed reported the use of local herbs before the initial stage of the disease. In contrast, others resorted to prayers for spiritual healing, and others used traditional Chinese medicines.

“…when I had started feeling unusual pain, my wife cooked for me mululuza [bitter leaf –used to treat malaria], which I took for about two months. It reduced the pain initially, but it later failed to work, and the pain became too much. I then bought these Chinese herbs which they advertise in town, which gave me temporary relief from the pain”. (IDI; Man aged 70).

“…My neighbor directed me to some pastor here in Kampala whom they said heals all illnesses through prayer. This man prayed for me for almost a year; he could even give me water to use to wash my body parts that had the pain. At some point, the pain became too much, I couldn’t stand or walk, then I decided to go to the hospital, and they found out that I had prostate cancer”. (IDI; Man aged 58 years).

Similarly, healthcare providers noted that many patients first relied on traditional remedies and faith-based healing before seeking medical care, resultantly many of the patients reported to the health facility when the disease was advanced. This was further emphasized by one of the health workers;

“Yes… and also, we get those who are going to church for prayers to be cured. But usually, those are the people who come in the advanced stage. They actually tell you that I took this medicine, I got somehow better, but now it has come back. They tell you; I went, they prayed for me, the symptoms reduced, but now they are back.” (KI, Nurse)

Access to treatment
Generally, across all the participants, both patients and KIIs, it was reported that access to health facilities for diagnosis and treatment was limited in rural areas.  Some patients reported difficulties in accessing health facilities for diagnosis and treatment due to the long distances and associated costs.

“It is too costly to access treatment, especially when I was still getting care from private hospitals. It requires a lot of money to be treated, yet in the village, we no longer have money. I need transport to come from Kayunga to here for treatment, and on each journey, I spend 40,000 Ugandan shillings.” (IDI; Man aged 60)​

Health workers also noted that men rarely go for cancer screening, making early diagnosis difficult. Most key informants stated that men do not attend community health awareness campaigns, where mass screenings are organized, as these are often perceived as gatherings for women.

“Men in the community have poor health-seeking behaviours; they don’t attend screening campaigns organized in their communities. Most of them say these gatherings are for women, so whenever we organize, they always pretend to be busy, and because of this, they never get a chance to be diagnosed early”. (KI, Nurse).

Perceived barriers
Across the interviews, several barriers were identified as significant obstacles to prostate cancer diagnosis and, consequently, treatment. Key barriers included men’s fear of receiving a positive diagnosis, stigma, limited knowledge about prostate cancer, the perceived high costs of diagnostic procedures, and restricted access to healthcare services. Among key informants, stigma was frequently mentioned as a major factor that instilled fear in men, discouraging them from seeking diagnosis. As a result, many opted for traditional herbs from local healers instead of seeking medical care.

“…they [prostate cancer patients] keep in the community taking their local herbs, when these herbs fail to work, that is when they decide to come here [UCI], they waste a lot of time in the community while using these local herbs and come to the hospital when the disease has affected most parts of the body”. (KI, Doctor).

Furthermore, some patients struggled to navigate the healthcare system, encountering challenges such as language barriers, long waiting times, and a lack of clear guidance at healthcare facilities.

“The biggest problem of accessing health services at UCI is that there is no guidance for us to move from one place to another. People end up sitting or waiting at the wrong points and are told to go elsewhere by just pointing towards that direction, yet some of us cannot read. Another problem is that Luganda and English are the mainly used languages, yet some people cannot understand them”. (IDI, Man aged 70).

The key informants further revealed that some prostate cancer patients had cultural myths they associated with prostate cancer, which hindered them from seeking medical care.

“There is this myth about the kanyama [biopsy] in Buganda; people say that once they take off a tissue from you for a biopsy test, it’s the beginning of your death, so most men dodge it; when you tell them you want to do a biopsy test, they disappear and never come back”.( KI, Doctor).

Relatedly, some patients thought that cancer is a result of witchcraft, so they preferred traditional healers to modern medicine. They only seek medical care when they are critically ill.

“…and some people still believe prostate cancer is as a result of witchcraft, they first go to the traditional healers in their villages, keep there for so long and when the things fail to work that’s when they decide to come to the hospital, some of them come when they can’t even walk or stand because the time they come here the disease has attacked most body parts”. (KI, Doctor).