We interviewed 42 women undergoing cervical cancer treatment of which 64% were living with HIV at the time of diagnosis (Table 1). Median age was significantly lower (p<0.001) in women living with HIV (45 years) compared to those without HIV (64 years). Women with HIV were more likely to present with earlier stage of disease compared to women without HIV, with 47% of women living with HIV presenting with Stage III in comparison to 15% of women living without HIV (p=0.01). Most women interviewed had a primary education level or lower (40%), identified as Christian (90%), and preferred Setswana as their primary language (83%). In comparison to women living without HIV, women living with HIV were more likely to use public transportation (96% vs 80%) and more likely to be single (85% vs 53%) at the time of the interview.
Overall screening rates were low among participants regardless of their HIV status; only 24% reported to ever being screened prior to developing symptoms. At the screening visit most proximal to cancer diagnosis, 60% of participants had symptoms (Table 1). Across participants, it took median 52 days (IQR: 15-176) from their most proximal screen to receipt of cancer diagnosis, with no significant differences by HIV status.
General awareness and knowledge regarding cervical cancer screening was high in both groups, but knowledge about specific risk factors including HPV was low. Only 62% of women knew HPV can cause cervical cancer and only 5% knew that HPV infection can be asymptomatic. In comparison to women living with HIV, women living without HIV were significantly less likely to know that women should be screened even if there are no symptoms (100% vs. 73%, p-value=0.01). Regarding specific risk factors, women living with HIV tended to report higher levels of screening knowledge in comparison to women living without HIV overall (Mean (0-12): 8.9 vs 10.0, p-value=0.05), with only one item reaching statistical significance. Women living with HIV were more significantly more likely to know that vaginal washing (67% vs 27%; p=0.01) did not increase cervical cancer risk than their counterparts. Table 2 outlines all survey measures overall and by HIV status.
Exploring Experiences and Drivers of Delay: Appraisal, Help-Seeking, and Diagnostic Phases
Across the initial three phases of the Model of Pathways to Treatment (Appraisal, Help-Seeking, and Diagnostic Phases), patients reported a variety of individual, community, and system-level factors that both hindered and enhanced access to timely care. Table 3 outlines thematic quotes from various phases in Model of Pathways to Treatment in addition to the sections below.
Appraisal: Screening Awareness and Symptom Assessment
In line with quantitative findings, many participants expressed limited awareness of risk factors that can contribute to cervical cancer, particularly HPV, throughout the interviews. This is exemplified in the response of one participant who stated “Honestly, I cannot talk about HPV because it is the first time I hear the name HPV, and this is what would make it difficult for me to answer.” (Early-50s, Person Living with HIV (PLWH))
Similarly, few participants knew that cervical cancer could be prevented through screening and thus often described screening as a test to find out if they have cancer or if they were experiencing symptoms, as reflected by these two participants:
“I have not heard of anything that causes cervical cancer. I do not know how it can be prevented but I heard people mentioning that for one to know if they have cervical cancer, they have to go for cancer screening.” (Early-40s, PLWH)
“I once heard that when experiencing a lot of unpleasant vaginal discharge, one should check the doctors for cervical cancer screening.” (Late-50s, PLWH)
One participant further explained that she was unaware of the potential severity of cervical cancer, “Now I know the danger of cervical cancer. Back then I did not know. When people talked about cancer and its existence, I never paid attention. I did not know anything.” (Late 40s, PLWH).
Help-Seeking: Undergoing Screening and Diagnostic Evaluation
Many participants expressed individual fears or concerns as barriers to screening and cancer care including fear of going to the hospital. For many women, like these two participants, this fear stemmed from both general avoidance of care and concerns of treatment itself.
“I would often, in my life like I was telling you that I am not someone who visits hospitals regularly, hear people speaking ill of [the local hospital]. As if to say when you go to [this hospital] you are lost.” (Late-60s)
“Sometimes we tend to brush off some issues. We delay [screening] and only become alert when the signs start showing.” (Late-50s, PLWH)
In addition to individual fears, structural factors including limited testing equipment and other resources, added to challenges in screening and diagnosis as noted by this participant.
“I once went to the clinic and for us with HIV. We are supposed to have tested for cervical cancer before seeing a doctor. I went there and when it was my turn we were told that there was no testing equipment... The resources should always be available especially for patients living with HIV because we are too vulnerable to some illnesses.” (Early-40s, PLWH)
Diagnosis: Receiving Results and Follow-up Care
Across the participants, the most substantial driver of delays seemed to be delays in both receipt of screening results and delays in appointments following abnormal screening.
Timeliness of return of screening results to patients varied widely. Many participants stated that they did not receive the results at all, even after multiple screenings. As one woman expressed when explaining why she eventually stopped going to get screened: “I once screened when I went for a six-week ante-natal checkup in [other city]. I always tested but did not receive any results until I gave up.” (Early-40s, PLWH)
Women also reported delays in returning for appointments following abnormal screening, even though they were recommended.
“The [screening] results were not good [in 2016]. I am the one who delayed to go to the doctor… [until 2018 when] I went back to the nurse to say, ‘I have not taken any measures since.’” (Early-50s, PLWH)
Amid discussions of the various challenges that women faced, many women described sources of support and strength that helped them to overcome these challenges. Several women noted that they drew upon their community including their children and their religious community if they were in need. For example, one woman stated,
“I could not accept the results very well, it was so difficult, my children sat me down and explained that cancer is like any other disease, and I could live longer if I go for checkups regularly.” (Late-50s, PLWH)
Other women noted that system-level or community services are available and they can easily access them if they seek them out.
“It is not difficult [to seek healthcare services] because some of us know the illnesses we have and where to go for assistance at the clinic. When you are given something to take for your ailment you also know what to do… It is easy because I have already taken a step towards it. I have not hidden my medical condition.” (Early-50s, PLWH)