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Table 3 Thematic analysis results with supporting quotations from healthcare and community leader interviews

From: Gluteal fibrosis, post-injection paralysis, and related injection practices in Uganda: a qualitative analysis

Kumi Wakiso
Consensus: Inappropriate intramuscular injections are the perceived cause of GF & PIP
 • “The outcome has always been attributed to quinine. The mother's report that on the onset of injection, the child gets paralyzed. The leg will just be stiff. Others get gluteal fibrosis, failing to squat on knee bend.” (Kumi, Public Village Health Worker)
 • “[Gluteal intramuscular injections given frequently to children include] …quinine, gentamycin and penicillin.” (Kumi, Public Nurse)
 • “[there’s an] epidemic, of intramuscular injections….And quinine itself was toxic to the muscles. Some of them ended up with a fibrosis much later because quinine was probably not properly diluted. Not everyone was giving the correct dilution of quinine for the muscles so I think there was quinine toxicity in the muscles that led to the healing by fibrosis.” (Kumi, Private Physician)
 • “When penicillin is given IM to children, it causes fibrosis. And as time goes on sometimes the child gets an abscess…If they hit the wrong site then the child can develop paralysis.” (Kumi, Public Nurse)
 • “Now, if they inject a kid in the buttocks in the wrong position it will automatically cause that nervous effect in the buttocks and it brings that paralysis.” (Kumi, Private Nurse)
 • “For the paralysis it is mostly due to an injection that is causing a swelling that compresses the nerve or an injection directly into the nerve that can cause a paralysis. So, any medicine injected in the wrong place which targets the nerve can give you a paralysis. What you’re giving doesn’t matter for the injection… In terms of the fibrosis, there are a few documented agents or drugs that can cause tissue necrosis. Something which is less observed or something that is bound to cause after injection can in the long run cause fibrosis. It is toxic.” (Kumi, Public Pharmacy Worker)
 • “A number of [children with gluteal fibrosis] start by getting an abscess. And then that abscess will not be managed properly. In the healing process there is fibrosis.” (Kumi, Public District Officer)
 • “So we also need to look at what effect does it have with the number of different injections. Maybe it is a cumulative effect. Or there are trigger factors, that when you keep pricking the buttock it triggers something.” (Kumi, Public District Officer)
 • “…in the rural setting, in those clinics, some of them rarely have the weighing scale…It is guesswork. The weight is guessed….Maybe I have too high a dose….we have children who have received injections. Could be the child has fallen sick 3 times in just two weeks. So when the child goes there they get injections each time.” (Kumi, Public Nurse)
 • “I strongly feel that there’s a causative agent but also host factors must be responsible because in this region, with this genetic stock of people, [these disabilities] are quite common around Teso region. Because I’ve worked in western Uganda, they’ve also given injections, but we haven’t seen these injections injuries…So, I think [injections are] a precipitating factor, but there must be host factors…The type of collagen maybe we have here might be different from the collagen other people have because in addition to the gluteal fibrosis, we also see a lot of old men here with urethral stricture disease, urethral fibrosis…So, there might be a genetic component. Maybe the collagen.” (Kumi, Private Physician)
 • “The problem is many people don’t know it. Like I also thought then that it was probably to do with exaggerated femoral anteversion or retroversion or something like that…Some of them think it may be a form of muscular dystrophy. Some of them think it’s cerebral palsy. It’s being misdiagnosed. The problem is many people do not know about it.” (Kumi, Private Physician)
 • “The only thing I've seen being given in the buttocks [in Wakiso] of late is diclofenac. I've not seen anyone with gluteal fibrosis.” (Wakiso, Private Physician)
 • “There is no specific drug, the cause is that the drug is injected by nonprofessional injecting it in a wrong site which brings paralysis.” (Wakiso, Public Nurse)
 • “They give an injection and it’s not sterile. Sometimes I might find some kind of infection after injection, and then the formation of fibrosis.” (Wakiso, Private Local Practitioner)
 • “They don’t dilute. It is very toxic to the muscle. In the healing process of the muscle there is fibrosis.” (Kumi, Public District Officer)
 • “Even if you are injected from a normal position, you’re getting 3 - 4 injections in 24 hours times 5 days…” (Wakiso, Public Nurse)
 • “You see, not everyone [who has intramuscular injections] gets [gluteal fibrosis]. Maybe it's something that these particular children have, either their healing is compromised…People who get keloids and have hypertrophic scars that run in families. The individuals may have a particular risk factors that make them prone to these disabilities.” (Wakiso, Private Physician)
 • “The few patients I’ve seen…either they’re coming from the north or the east. I haven’t seen any patient from Wakiso.” (Wakiso, Private Nurse)
 • “Yes I have heard of gluteal fibrosis, in the northeast.” (Wakiso, Public Village Health Worker)
Theme 1: There is limited access to healthcare
 • “The number of personnel that are trained is not enough. There is not a big number, but there are a lot of people who need care.” (Kumi, Public Pharmacy Worker)
 • “When you go to the hospital, you go in the morning and you come back in the evening. It is a long distance…Most of them don’t have that time. You might even come back without treatment.” (Kumi, Private Drug Shop Worker)
 • “It is a huge population so [drug stockouts] commonly happen…[The private clinics] purchase when they need. But for us, we wait. The government hospitals have to wait for the national medical council to deliver.” (Wakiso, Public Physician)
Theme 2: Gap in care provision has led to frequent use of private clinics
 • “You go to the health unit and they say there are no drugs, go and buy. So people tend to fill in that gap. So instead of you going very far, why not just go [to the private clinic]. And then when you go there you are given things you want.” (Kumi, Public District Officer)
 • “In the villages we don’t have trained health workers reaching to those hard to reach areas, but there are people who need treatment…So what do they do, they improvise, they find somebody that can give [them treatment]…You see our country is still primarily rural. There are so many places that are hard to reach…And you know whenever there is a gap there is always people that will fill the gap. So we have a number of private clinics in those hard to reach areas. They’re actually handled and open by untrained persons.” (Kumi, Public Pharmacy Worker)
 • “So there’s a problem with the health care service provision. There is no qualified doctor to give the right route of administration in the rural setting. So these quacks get ahold of this drug and they give it…People go to the [private] clinics because the distance.” (Kumi, Private Physician)
 • “Most of these [private] facilities are run by nursing assistants or somebody who maybe did some lab work or somebody who has ever worked at a hospital…They start up clinics, and they give all those kind of medications.” (Wakiso, Private Nurse)
Theme 3: The private clinics predominately utilize unqualified clinicians who are not trained to give IM injections
 • “In the rural settings…people have gone ahead to open up [private] clinics, and they are not trained in the techniques on how to inject. And most of these people end up getting those problems when they are injected in the clinics.” (Kumi, Public Nurse)
 • “There are people masquerading to be nurses and doctors in the villages who are going to inject. They do it in the wrong sites and find that kids end up with a problem.” (Kumi, Public Physician)
 • “Some of them might not knowing even the sites [or sterile techniques], because they are not qualified personnel.” (Kumi, Public Nurse)
 • “They say we are failing to get the vein. So let’s inject [the quinine]. But the initial right route is through IV. In the private practice, not all people are trained, there is a lack of knowledge that they’re supposed to give IV and some are not trained on how to do it.” (Kumi, Public District Officer)
 • “They are not trained enough. Some of these nurses, they have difficulty finding the vein and sometimes they may learn how to do it, but not enough training still. It is easier to give an injection. You just prick. While finding a vein is difficult.” (Wakiso, Public Village Health Worker)
 • “We have a very serious gap. [We are] good at developing the policies, launching them, but not dissemination…They are disseminating the policies mainly to public facilities, leaving these people from the private facilities without continued education.” (Wakiso, Public District Officer)
 • “I have attended workshops before when I was still working at the government hospital; I was working there and could attend them. Private clinicians are not invited.” (Wakiso, Private Local Practitioner)
Theme 4: The private clinics have misaligned economic incentives increasing utilization of IM injections
 • “…you cannot place a doctor in the village. How will you pay him, and do you have enough people to come to that clinic? You resort to taking these ordinary untrained people, so long as you have showed him how to treat then they will work there. Of course, the outcome will be the patient to suffer because the person is not actually trained.” (Kumi, Public Social Worker)
 • “…people they can sell [injections] to get more money than with oral medications.” (Kumi, Private Local Practitioner)
 • “Most of them have an understanding that when you’re given the injection in the buttock it’s faster [than intravenous]. So when they are giving injections, the other one is doing a business and gets more. They give them what they want. They get more business, more money, more injections.” (Kumi, Public Nurse)
 • “In those private clinics, they have better customer care unlike in public hospitals or facilities where there are lines and you can go and sit there for hours. In the private clinic they know this is a business. They know if they don’t give good customer care they lose.” (Wakiso, Public Community-Based Rehabilitation Worker)
Theme 5: There is inadequate community education regarding appropriate quality healthcare delivery
 • “The people in the village cannot distinguish who is a qualified health person and who is not. So they just go to where they think there is a service.” (Kumi, Public District Officer)
 • “They prefer an injection. For most of them, they think the injections act faster. They think injections get to the bloodstream faster than tablets.” (Kumi, Public Physician)
 • “Then those people don’t have a lot of knowledge to know that this one is qualified or not. They think anyone with a white gown is qualified.” (Wakiso, Public Nurse)
 • “People associate quality with money…Where you pay money, the quality must be better than where it is free, not knowing that the government is paying.” (Wakiso, Public District Officer)
 • “We need continue the campaign on the dangers of giving and receiving injections. Because in most cases the person that comes in thinking if you don’t give me an injection I won’t get well.” (Wakiso, Public Community-Based Rehabilitation Worker)
Theme 6: There is a lack of necessary regulation/enforcement for injection practices
 • “Well the laws are there, but the enforcement is poor.” (Kumi, Public District Officer)
 • “The officer tries to monitor. But there are many of them [private clinics].” (Kumi, Public Nurse)
 • “The chance of getting someone trying to do something wrong within Kampala is lower [because] it is easier to report them. When they’re far deep down in the village, the practices there are least monitored.” (Wakiso, Private Drug Shop Worker)
 • “ In the urban areas they fear inspection, but in the villages, rarely someone goes to check on these facilities. If anybody will check, [the clinic workers] will be alerted, people coming around, close their facility…The monitoring mechanism is very poor. We’ve got so many health centers in Uganda, private and the public, but really you find no one is following up on the clinicians or the nurses. No one is doing that routine follow-up to see how are they doing their work; are they doing the right things or not?” (Wakiso, Private Community-Based Worker)