Barriers and facilitators to chemotherapy initiation and adherence for patients with HIV-associated Kaposi’s sarcoma in Kenya: a qualitative study

57 participants underwent semi-structured interviews. Participants were median age 37 (IQR 32–41), majority male (68%), and were interviewed at a variety of health centers and one referral hospital throughout Western Kenya (Table 1). Most themes within the sIMB model applied to both chemotherapy initiation and adherence, as described below and outlined in Table 2 and depicted in Fig. 2.

Table 1 Interview participant characteristicsTable 2 Themes of facilitators and barriers to Kaposi’s Sarcoma treatment adherence and completion, illustrated with representative quotes.Fig. 2figure 2

Major themes for initiation of and adherence to chemotherapy, structured within the Situated Information, Motivation, Behavior (sIMB) framework as developed by Amico et al. [12]

Situated—economic/political/societal

There were multiple overarching situated barriers and facilitators which influenced chemotherapy initiation and adherence. One of the most common barriers was not having the financial resources to afford transportation to chemotherapy, chemotherapy medications, or food, with one patient reporting “My parents said let us sell this cow for you to at least get one injection…I told them not to because I was wondering what will happen to my younger siblings… I felt like I will leave them in poverty.” (#86, M, 36, MTRH, treatment non-starter) Transportation in particular was very costly for many patients, who often had to travel long distances to reach one of few centers providing chemotherapy.

A prominent facilitator to chemotherapy initiation and adherence was having the Kenyan government sponsored National Health Insurance Fund (NHIF) health insurance, which paid for the majority of patients’ treatment. A few patients also had work-sponsored sick leave or disability insurance to cover loss of income while receiving treatment. Additionally, some patients were part of microfinance groups, often either through HIV support groups or faith-based networks. Lastly, external funding sources such as through AMPATH or private donors who sponsored the cost of KS treatment was another notable facilitator. As one patient reported, “My NHIF card helped me…When I went to Webuye, they first asked me if I had an NHIF card. I told them I had one. So whenever I came here, I would only incur cost of transport, but treatment and everything else was covered by NHIF.” (#52, M, 34, Webuye, treatment completer) In particular, at the AMPATH center, Chulaimbo, all chemotherapy was provided free of charge for a period of time during this study through a donor sponsored program.

Situated—community

At the community level some patients reported limited community social support and in fact reported a large amount of stigma after being diagnosed. Some patients believed this stigma was related to having visible skin lesions, while others believed the stigma was more related to the diseases processes itself including HIV and cancer. As one patient stated, “In the village… someone could come to visit you at home, but his intentions are to spy on you, when they go away, you get to hear other things. You hear them say that so and so has bewitched you. They are not of any help; they come to visit you but are not of any help.” (#43, M, 40, Chulaimbo, treatment completer) A few patients additionally reported that they were the first person in their community to be diagnosed with KS, which they felt limited community support and understanding of how to proceed with treatment. This was often a barrier specific to chemotherapy initiation rather than adherence.

In contrast, there were many themes relating to facilitators for starting and adhering to chemotherapy. Multiple patients found social support in their larger community, including meeting other patients in the community with KS or having community, often faith-based fund raisers for treatment. For example, one patient stated, “The church too supported me…The also came to visit me and pray for me, if I told them I did not have transport to the hospital, they could contribute and give me, and they also encouraged me that I should go to hospital.” (#63, F, 35, Chulaimbo, treatment non-completer) Some patients also found community health workers who would monitor their HIV care an important source of advice and support.

Situated—health centers/system

Within the health care system, many larger barriers and facilitators influenced a patient’s access to chemotherapy initiation and adherence. Prominent barriers within the health system were relatively limited sites from which patients could obtain chemotherapy, which led to issues with transportation. Furthermore, many sites only offered chemotherapy every week or every other week on a specific day, leading to frequent scheduling conflicts, as one patient described “I wasn't happy at all… I am a widow, I have children and I don’t have anyone supporting me, and my appointments are very close, after every two weeks. Looking for that transport is very hard. So, it can discourage you and you can stop the medication.” (#71, F, 33, Chulaimbo, treatment non-completer).

At the larger tertiary hospital in particular, some patients found it difficult to navigate among different specialist services, such as from HIV care to oncology care. When patients did manage to navigate to the oncology center, they regularly had to wait for many hours to see a provider and oftentimes there were additional delays for scheduling the chemotherapy start date.

Facilitators to chemotherapy initiation and adherence included an easy chemotherapy referral process and free chemotherapy. Furthermore, at the large teaching and referral hospital there were social workers available to help with costs of chemotherapy and help patients enroll in NHIF, allowing their chemotherapy costs to be covered by insurance.

Information

In addition to the larger structural barriers and facilitators identified, within the ecologic framework there were also multiple individual level themes related to chemotherapy adherence and initiation. The first related to patient’s knowledge of KS and its treatment modalities. Prominent barriers were limited knowledge or false beliefs, including that chemotherapy is deadly, that cancer cannot be cured, and not understanding the purpose of chemotherapy. As one patient stated, “I just know that when you receive chemo, it is death and there is no healing.” (#75, F, 38, MTRH, treatment non-starter).

An additional barrier was the knowledge of chemotherapy side effects—some of which were accurate, and others were likely over-estimations of the negative consequences of chemotherapy. An additional barrier was the use of traditional medicine instead of chemotherapy.

Facilitators were patients understanding the positive impacts of chemotherapy to improve or cure KS, understanding the chemotherapy regimen and timing of doses, and having knowledge about health centers where chemotherapy was available. An additional facilitator was when patients were aware of which chemotherapy side effects to expect, and then were able to tolerate these side effects to continue to return for further rounds of chemotherapy.

Motivation

Patients additionally described multiple interpersonal and intrapersonal motivations related to chemotherapy initiation and adherence. Barriers included having multiple different healthcare providers with inconsistent information, lack of appropriate provider follow up, lack of education from providers about chemotherapy schedule and side effects, general mistrust of the healthcare system, and negative interactions with healthcare workers such as being reprimanded by providers. For example, one patient described “That made me anxious about going to the hospital…because of your status [HIV status], they will not speak to you well… that would make you want to give up.” (#78, M, 35, Kitale, treatment non-starter) Negative motivators from family and friends were stigma surrounding chemotherapy and a cancer diagnosis, as well as lack of support for pursuing KS treatment.

Interpersonal motivation often occurred between the patients and their providers as well as between the patients and their support network. Motivators for chemotherapy initiation and adherence included positive experiences with providers, consistent and accurate provider information, positive experiences with research staff, and both emotional as well as material support from family and friends.

Patients additionally described intrapersonal motivation barriers and facilitators. Intrapersonal barriers to chemotherapy were having poor health, losing hope, being fearful of chemotherapy, experiencing side effects of chemotherapy, and having co-morbid disease processes take priority (ex. Managing HIV care or pregnancy care). Many participants who reported being fearful or the chemotherapy or associated side effects noted this to be a large barrier to chemotherapy initiation.

Facilitator themes were motivation to seek or continue treatment from their severity of KS, faith in the healthcare system, and motivation to support their family. For example, a patient explained “What helped me was the disease that I suffered from…It was smelling…It made me come for treatment.” (#54, M, 40, Busia, treatment non-completer).

Behavioral skills

Lastly, patients either acquired or lacked various behavioral skills which impacted their initiation and continuation of chemotherapy.

The activation skills which facilitated chemotherapy were coping skills, resilience, garnering social support, prioritizing oncology care, acceptance of disease, and accepting some of the hassles of the healthcare system such as long lines and wait times from treatment.

Functional skills which facilitated chemotherapy were setting and remembering chemotherapy appointment times, arranging leave for work for chemotherapy, arranging money for transportation and chemotherapy costs, and communicating concerns and wishes to their healthcare provider. As one patient with many functional skills described “As soon as I clear one [appointment], I start looking for resources for the next [appointment]…So first of all, I make sure the NHIF card is active… and then I look for money for transport.” (#34, M, 45, Chulaimbo/Busia, treatment completer) Some patients lacked these functional skills, which impeded their ability to initiate and adhere to chemotherapy. Themes included challenges planning for chemotherapy, arranging time off, arranging money, managing medications, and communicating with healthcare providers.

Lastly, system navigation skills that facilitated chemotherapy were a patient’s ability to navigate the logistics of chemotherapy and the complex referral system.

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