Table 2 Themes of facilitators and barriers to Kaposi’s Sarcoma treatment adherence and completion, illustrated with representative quotes.
Themes | Quotes | Type of Theme | Incidence Density Number of quotes per theme |
|---|---|---|---|
Structural—Policy | |||
Facilitators | |||
National Health Insurance Fund | “[The doctor] knows very well that I have the active NHIF card so he can do the medication without looking back so I really didn't suffer financially…” (#51, M, 43, Chulaimbo, treatment completer) | Both | High Total: 72 Completer: 39 Non-Completer: 20 Non-Starter: 13 |
Public Health Messaging | “It [public radio messages] helped taking my medication…I heard them say if cancer is properly treated and if you follow through with what you are told by your doctor then it will resolve.” (#63, F, 35, Chulaimbo, treatment non-completer) | Both | Low Total: 4 Completer: 1 Non-Completer: 1 Non-Starter: 2 |
Microfinance Groups | “I do small businesses and God helps me, because when I take the loan, I work hard, and I am able to pay off and take another loan.” (#36, M, 43, MTRH, treatment completer) | Both | Medium Total: 81 Completer: 36 Non-Completer: 31 Non-Starter: 14 |
PEPFAR / AMPATH funding | “I appreciate this AMPATH, I do not know whether it is AMPATH because sometimes when I come here, they reimburse me transport and I find it very easy for me to come.” (#62, M, 35, Chulaimbo, treatment non-completer) | Both | Low Total: 24 Completer: 13 Non-Completer: 8 Non-Starter: 3 |
Barriers | |||
Lack of Affordable Public Transportation | “Like me when I come to Chulaimbo you know they… I used to come by vehicle when I was able to at least walk, but nowadays I have to hire motorbike, so I use over 1500 [Shillings] just to come to Chulaimbo and back” (#34, M, 45, Chulaimbo/Busia, treatment completer) | Both | High Total: 195 Completer: 52 Non-Completer: 74 Non-Starter: 69 |
Poverty | “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) | Both | Medium Total: 70 Completer: 13 Non-Completer: 6 Non-Starter: 51 |
Food Insecurity | “I think just those ones, planning for visiting the hospital also, you have to plan, like there is no money in the house then you are telling people that you are going to hospital, where is the money? There is no food, food is not there, you want to attend the clinics, it's a challenge, aah” (#34, M, 45, Chulaimbo/Busia, treatment completer) | Both | Low Total: 25 Completer: 6 Non-Completer: 5 Non-Starter: 14 |
Lack of Disability Insurance | “I was employed …You know every company has its own regulations, they give you specific period of time to see if you will recover, then they keep adding but if you are not recovering you are retired on medical grounds, yeah…because if you are not able to do the job, then they is no need for them to maintain you, that is what happened.” (#44, M, 46, Busia, treatment completer) | Both | Low Total: 2 Completer: 2 Non-Completer: 0 Non-Starter: 0 |
High Cost of Chemotherapy | “No, not because I had cancer, the money that was needed for my treatment was a lot, and they wondered what I would sell for my treatment.” (#54, M, 40, Busia, treatment non-completer) | Both | Medium Total: 80 Completer: 4 Non-Completer: 15 Non-Starter: 61 |
Lack of National Health Insurance Fund | “Whenever I came, the doctor would ask if I enrolled into NHIF, I told them I hadn’t, they would just write it down. I kept wondering what NHIF was…If I had tried it earlier on, I would have recovered by now.” (#79, F, 53, Kitale, treatment non-starter) | Both | High Total: 118 Completer: 28 Non-Completer: 40 Non-Starter: 50 |
Structural—Community | |||
Facilitators | |||
Community health worker | “Nyamrerwa (community health workers in his mother tongue), those people, they are supposed to come the way we are seated and teach you on this and that, but there are those whom you have to go to their houses. So, it is required that they also visit every village and know that who and who is sick and maybe someone is sick but fears to go to the hospital.” (#43, M, 40, Chulaimbo, treatment completer) | Both | Low Total: 30 Completer: 12 Non-Completer: 6 Non-Starter: 12 |
Other members in community with KS | “My sister brought in some guy who had had the sarcoma, exactly the same condition and him it was even worse because the two legs were affected equally, then he had recovered…He said, no you just continue. In fact, I was planning to…, because they told me that chemotherapy is the one that clears my blood, then I was planning to abscond the other the other sessions, then he told me, no, don't do that, you go for them you are going to heal. I thought, actually if this guy healed and he was like this, he was describing exactly what I feel, then I when I got out of hospital I didn't want to wait, I just wanted to continue with my chemo.” (#34, M, 45, Chulaimbo/Busia, treatment completer) | Initiation | Low Total: 6 Completer: 4 Non-Completer: 2 Non-Starter: 0 |
Community social support | “Its only people from my church that raised 1000 shillings for transport the first time I came. Its them that raised the money.” (#35, M, 50, Chulaimbo, treatment completer) | Both | Low Total: 22 Completer: 13 Non-Completer: 9 Non-Starter: 0 |
Barriers | |||
Low knowledge of KS in community | “I didn’t, I didn’t because I just only knew somebody who has this elephantiasis and when this things started appearing on my skin, I thought that maybe it is that disease that is starting to appear then when I came here, they told me that this is different from that one I thought, that it was Kaposi’s.” (#62, M, 35, Chulaimbo, treatment non-completer) | Initiation | Low Total: 21 Completer: 4 Non-Completer: 0 Non-Starter: 17 |
Lack of community social support | “People just came the first time, but they didn’t come the second time. They just came to plan but did not show up on the day of the fund raiser.” (#33. M, 34, Chulaimbo/Busia, treatment completer) | Both | Low Total: 21 Completer: 3 Non-Completer: 5 Non-Starter: 13 |
Community stigma | “That can help, it can help since when many people are…when they see someone’s health has gone down, they think that since they ever heard that that person is positive, they take as if they stopped medication or they continued… having unprotected sex, people think of things like those, yes.” (#75, F, 38, MTRH, treatment non-starter) | Both | Low Total: 9 Completer: 3 Non-Completer: 2 Non-Starter: 4 |
Structural—Health Centers | |||
Facilitators | |||
Social Worker | “At Eldoret, I pleaded and told them [social workers] I have just acquired my NHIF card just help me instead of just going home without any treatment, so they helped me and told me next visit make sure you come with money or have that NHIF card.” (#79, F, 53, Kitale, treatment non-starter) | Both | Low Total: 5 Completer: 0 Non-Completer: 0 Non-Starter: 5 |
Free chemotherapy at health center | “This treatment is costly, people spend millions to get treatment, we don't have that kind of money, but since treatment has been offered for free, you have to go.” (#54, M, 40, Busia, treatment non-completer) | Both | Low Total: 6 Completer: 0 Non-Completer: 2 Non-Starter: 4 |
Barriers | |||
Difficulty in finding transportation to oncology centers | “Ok that one is a challenge to me since at times am told to come to the hospital even at a date like today and from where I come from, I don’t have transport to come with, so if I totally lack transport then I would not come,” (#69, M, 27, Chulaimbo, treatment non-completer) | Both | Low Total: 5 Completer: 1 Non-Completer: 3 Non-Starter: 1 |
Far distance to oncology centers | “What I would like to request is that you could open another branch …the patients will not face the challenges of transport” (#48, M, 34, Busia, treatment completer) | Both | Low Total: 16 Completer: 9 Non-Completer: 6 Non-Starter: 1 |
Limited treatment days/Inconvenient appointment times | “At times you come, and you don’t find the doctors…I did not find them, but I found a guy that told me to come the following Thursday when the doctors are around.” (#69, M, 27, Chulaimbo, treatment non-completer) | Adherance | Low Total: 4 Completer: 2 Non-Completer: 0 Non-Starter: 2 |
Difficulty with Navigation | “It was hard because I was going there, and I didn’t know anyone. I only knew the doctor that took the biopsy, that the only person I knew, we communicated on phone till I got there.” (#33, M, 34, Chulaimbo/Busia, treatment completer) | Both | Low Total: 5 Completer: 1 Non-Completer: 3 Non-Starter: 1 |
Referral Issues | “I did hear them saying that when you go to Referral you should first book an appointment, then come back and wait for the day to be treated and that you cannot just go and be treated the same day without an appointment.” (#63, F, 35, MTRH, treatment non-completer) | Initiation | Low Total: 4 Completer: 1 Non-Completer: 2 Non-Starter: 1 |
Long lines | “Ok I always know that here in referral it is a must that you queue the whole day and even go home without any doctor helping you.” (#75, F, 38, MTRH, treatment non-starter) | Both | Low Total: 29 Completer: 14 Non-Completer: 8 Non-Starter: 7 |
Information | |||
Facilitators | |||
Understands chemotherapy can improve/cure KS | “Yes, when I started treatment, there is a doctor that told me that if I have money, if I start treatment early it will clear since it was not bad, yeah, that encouraged me, it encouraged me to come to Chulaimbo as they had advised me, it made me work hard. Then because I know my children are young and they still have to study, I had to come so that I can go back to normal so that I can push for my children to have a normal life.” (#70, M, 39, Chulaimbo, treatment non-completer) | Both | Low Total: 11 Completer: 8 Non-Completer: 1 Non-Starter: 2 |
Understands / accepts side effects | “It was…, according to how I was feeling, it was just as a result of the chemo, because what I was being told at the beginning, I came to realize [the side effects] at the 4th cycle.” (#37, M, 40, Chulaimbo, treatment completer) | Both | Low Total: 14 Completer: 7 Non-Completer: 3 Non-Starter: 4 |
Understands / accepts chemo regimen/schedule | “For the first cycle when I get the injection, every month, I came twice, meaning that for the injection, I always took four months to come in, because every month twice; after two weeks, after two weeks, then after that they gave me a period of two months for taking blood for the test for that disease if it’s still continuing or it is not continuing. I went to the lab; they took the HB then they told me to come back for another treatment for GEMSA.” (#62, M, 35, Chulaimbo, treatment non-completer) | Both | Low Total: 44 Completer: 25 Non-Completer: 17 Non-Starter: 2 |
Knows where to obtain chemo | “There is a nurse at Bungoma who told me there is a clinic; AMPATH at Referral where I will be given injections and these things will get better, so she is the one who encouraged me.” (#48, M, 34, Busia, treatment completer) | Initiation | Low Total: 3 Completer: 3 Non-Completer: 0 Non-Starter: 0 |
Barriers | |||
Chemotherapy is deadly | “Interviewer: Mmh…but in your own opinion, do you think that the medication led to early death?” “Respondent: Yes, it quickened.” (#82, F, 55, MTRH, treatment non-starter) | Initiation | Low Total: 14 Completer: 5 Non-Completer: 1 Non-Starter: 8 |
Knowledge of chemotherapy side effects | “That these drugs, if you have already started them, they will turn your body black and will shave the whole of your hair with pain, the stomach will swell, you know what I hear from people, that the stomach will swell, your hair will fall of like someone who has shaved with a razorblade and walking will be a problem.” (#41, M, 38, Chulaimbo, treatment completer) | Both | Low Total: 24 Completer: 14 Non-Completer: 7 Non-Starter: 3 |
Does not know what chemotherapy is | “Oooh those drugs, I have never gotten time to understand what those drugs are…yeah now that I was sick and what I wanted was to receive treatment and get well so I have not gotten time to ask what they are maybe I will ask once am healed.” (#69, M, 27, Chulaimbo, treatment non-completer) | Initiation | Medium Total: 71 Completer: 35 Non-Completer: 22 Non-Starter: 14 |
Belief in traditional medicine | “There are better traditional medications compared to chemotherapy…they are more powerful, without side effects like chemo” (#42, M, 43, Busia, treatment completer) | Initiation | Low Total: 2 Completer: 1 Non-Completer: 5 Non-Starter:1 |
Cancer cannot be cured | “No! They didn't say anything, people were just shocked, cancer is shocking! Some said I should start medication, but then i said if it's Cancer I won't start because there's a wife to my brother, who was on treatment for cancer here, but she died, so I said to myself if it's the same as that of XXXX [sister in-law’s name], let me just die…yeah.” (#82, F, 55, MTRH, treatment non-starter) | Initiation | Low Total: 38 Completer: 17 Non-Completer: 15 Non-Starter: 6 |
Motivation—Interpersonal | |||
Facilitators | |||
With medical staff | “The doctors at one time helped me, like you came through for us one time we were stranded. The doctors have helped us on 2 occasions…They have been treating me like their fellow human being.” (#33, M, 34, Chulaimbo/Busia, treatment completer) | Both | Low Total: 7 Completer: 2 Non-Completer: 4 Non-Starter: 1 |
With social network | “I had faith that I would be okay, because by the second week the people who thought that I was dying came home and told me that I would be cured that the doctor who was treating me knew what he was doing.” (#54, M, 40, Busia, treatment non-completer) | Both | Low Total: 7 Completer: 5 Non-Completer: 2 Non-Starter: 0 |
Barriers | |||
Due to medical staff | “No there was none, there was none since it was not explained that I wait for 2 weeks then come back. That is the only thing that was not explained to us…no, when we got a different doctor, they told us a different thing then you come get another one who explains to you. For us to get lost is because all of them did not explain to us how it was…since today you could find one doctor and tomorrow you find a different one…eeh.” (#56, F, 57, MTRH treatment non-completer) | Both | Low Total: 8 Completer: 2 Non-Completer: 3 Non-Starter: 3 |
Due to social network | “Sometimes I call my dad and he tells me that I talk to my in-laws. When I try to talk to them [in-laws] they don’t respond.” (#85, F, 24, Kitale, treatment non-starter) | Both | Low Total: 10 Completer: 1 Non-Completer: 3 Non-Starter: 6 |
Motivation—Intrapersonal | |||
Facilitators | |||
Severity of KS symptoms motivation to be treated | “It was the suffering, and I was motivated…My body was in pain…That is what helped.” (#32, M, 20, MTRH, treatment completer) | Both | Low Total: 31 Completer: 16 Non-Completer: 14 Non-Starter: 1 |
Faith in hospital systems | “When I got to referral, I already had faith that I had been cured…Immediately I saw the hospital I just had faith that I had been cured.” (#58, F, 36 Webuye, treatment non-completer) | Low Total: 4 Completer: 1 Non-Completer: 2 Non-Starter: 0 | |
For family/Wants to support family | “Yes, I wanted so much to be cured, I looked at my young children and I didn’t want to leave them before building their future.” (#53, M, 34, MTRH, treatment non-completer) | Both | Low Total: 11 Completer: 5 Non-Completer: 6 Non-Starter: 0 |
Barriers | |||
Poor health (cannot get to treatment facility) | “Yes, I had challenges getting time, when I came; they asked me why I was delaying in coming on the appointment dates? I told them it was hard to walk from my house to the road…When I tried to board the motorbike, I was unable to, I asked some women to help me, which they did. He brought me here (referring to Kitale AMPATH clinic), on alighting, thank God doctors were here, so they supported me off the bike and they expedited the process. When we finished, they helped me back on the same motorcycle, and I was taken back to my house, and I paid him 200 shillings. I told the doctors that I had taken long because of the illness.” (#79, F, 53, Kitale, treatment non-starter) | Both | Low Total: 9 Completer: 2 Non-Completer: 2 Non-Starter: 5 |
Lost hope | “You just die, the point I had gotten to! I just knew there was no more hope, I had started having bad thoughts because I had suffered a lot.” (#45, M, 31, Chulaimbo, treatment completer) | Both | Low Total: 14 Completer: 9 Non-Completer: 2 Non-Starter: 3 |
Fear of chemotherapy | “Ok what made me not to use chemotherapy, according to how I know chemotherapy, after one receives chemotherapy, it is only death there is no healing. So, I thought I was going to die and leave my children, it is better that I use ARVs the way I was told and maybe God will help me to get well and do my duties as normal.” (#75, F, 38, MTRH, treatment non-starter) | Initiation | Low Total: 11 Completer: 5 Non-Completer: 1 Non-Starter: 5 |
Lived side effects of chemotherapy | “It is just that blood, I became dark. And I had a lot of dots on the soles of my feet. Then at that time I lost my appetite seriously. I couldn’t eat. But I used to persevere because I wanted to get well, and I had to continue.” (#71, F, 33, Chulaimbo, treatment non-completer) | Adherence | Medium Total: 67 Completer: 37 Non-Completer: 30 Non-Starter: 0 |
Other co-morbid diseases | “Mmmh, no I had, I was sickly but not necessarily from the cancer, I had other conditions, mmmh, I was sickly, malaria, what, mmmh. Other conditions, mmmh, but I don't know if the cancer was also causing.” (#34, M, 45, Chulaimbo, Busia, treatment completer)) | Both | Low Total: 4 Completer: 2 Non-Completer: 0 Non-Starter: 2 |
Behavioral Skills | |||
Facilitators | |||
Activation skills | “It was, because you do come early, the service providers come late, so we end up taking a lot of time maybe you are coming from far, you started early, even at times without any even breakfast, or maybe you would wish to take but you had only the transport, so you just come minus that. Reaching here you wait, you get hungry, but you just have to wait until you get your turn comes, is when you go back. So that long waiting is also…, is a challenge…it doesn't discourage me because it is my life. I am looking at my life, so whatever…, however challenges, I have to keep on, yes.” (#37, M, 40, Chulaimbo, treatment completer) | Both | High Total: 195 Completer: 120 Non-Completer: 37 Non-Starter: 38 |
Functional skills | “It’s only upon me to remind my supervisor that on a such a date I will be away on the oncology treatment.” (#37, M, 40, Chulaimbo, treatment completer) “I just have to know how much I need for example for transport, food, and medication maybe for other little expenses.” (#42, M, 43, Busia, treatment completer) | Both | High Total: 105 Completer: 61 Non-Completer: 35 Non-Starter: 9 |
System navigation skills: HIC /Oncology care separate, self- advocacy, referral system | “It’s aah, actually, first of all it's a short notice, then you know there is.., there other there other duties, there are other… what can I …, other calls like for example the HIV I have to go for where I am supposed to…, like I am supposed to be coming here [Busia] for my HIV clinics but I don't, and in Chulaimbo what they normally do they just give me the drugs they don't go into…, because they see that is a Busia patient, and then I have transferred from my local …, because of oncology, eeh so those are the challenges. So, the others, it’s like I have now concentrated more on this cancer than on the other on the other treatments.” (#34, M, 45, Chulaimbo/Busia, treatment completer) | Both | Low Total: 11 Completer: 11 Non-Completer: 0 Non-Starter: 0 |
Barriers | |||
Lack of activation skills | “They told me I delayed when I went there on 2nd, I took time to go back there, I was supposed to go on March, but I went there on 2nd May…I just waited because they had told me that they would call me by phone.” (#83, M, 32, Busia, treatment non-starter) | Both | Low Total: 10 Completer: 0 Non-Completer: 0 Non-Starter: 10 |
Lack of functional skills | “And now let us say when you are coming here for your treatment, how will you be planning for your transport?” “Planning?” “Yes, because you’ve said that you are thinking of starting, how will you be planning for your transport” “God knows, I can’t say anything on that. I leave everything to God.” (#84, F, 30, Chulaimbo, treatment non-starter) | Both | Low Total: 2 Completer: 1 Non-Completer: 0 Non-Starter: 1 |