Facilitators and barriers to initiating and completing tuberculosis preventive treatment among children and adolescents living with HIV in Uganda: a qualitative study of adolescents, caretakers and health workers

A total of 50 IDIs were conducted for the selected participants (health workers (N = 10), adolescents (N = 10), care takers (n = 10) until saturation of content was achieved. Table 1 below summarises the demographic characteristics of the study participants.

Table 1 Demographic characteristics of study participantsFacilitators to initiation and completion of TPT among adolescents and children

From the IDIs, we found the following facilitators at individual level. Participants perceiving themselves as being at risk of contracting TB was a key facilitator to initiate and complete TPT. In addition, some care takers highlighted that the TPT will also help the child to have a good life without TB, but if she acquires TB and yet is already HIV positive, the child may be severally affected.

“Apart from the fact that it will help me to prevent TB, it will help me not to get TB and am assured that I will not get TB because TB is very risky, inconvenient and I will protect others because I know I am at a very high risk. So by taking the drugs, at least I know am protecting someone in case I get it, am protecting a family member, a sibling, a sister”. Male Adolescent 15 years.

Further analysis revealed that care takers and participants who were once diagnosed with TB and recovered narrated their agony and the experience of treating TB which they noted that they would not want to experience again. The experience they had with TB disease compelled them to initiate and complete their TPT dose.

“Another reason why I accepted my child to start on TPT is because my child has ever suffered from TB, and given that now we have the drugs for preventing it, I had no reason to resist it. I was afraid the child might acquire it again”. Female carer of 10-year-old adolescent.

The desire to remain free from TB emerged as a facilitator to initiating and completing TPT. The TPT was perceived as a breakthrough strategy to prevent acquisition of TB.

“Since I had an experience of a person with TB that I told you about, I didn’t want to wait until he is affected as it did to the other one I saw. So that forced me to ensure that the dose is completed”. Female caretaker of 14-year-old adolescent.

At the interpersonal level, support, care and encouragement from family, supervision from the caretakers also emerged as important facilitators to initiate and complete TPT. The participants remarked that receiving care and support (reminders) from immediate family encouraged them to complete their treatment.

“Like at home, there is my mother who always reminds me to take my drugs. That helped me to always take my drugs in time”. Female Adolescent, 18 years.

Community level facilitators included guidance and counseling, comprehensive information, mass awareness and sensitization about TPT. Participants mentioned that receiving adequate information and sensitization was helpful for their decision to initiate TPT. Participants reported that they received information from the health workers on how the child should take the medicine and how the treatment works to prevent the disease, something that encouraged most of them to start their children on treatment.

“The encouragement I got from doctors helped me to give treatment to my child for TB treatment which also made it easy for me to start him on TPT. I believe by the time the dose is completed the child will be okay. Doctors also sensitized us about the possible side effects of the drugs and they follow up with phone calls”.  Female care taker for a 7-year old child.

It emerged that information about the TPT made available by the health workers, with opportunities to discuss the treatment with the doctors, and making it known in the community, enabled the care givers to allow TPT to be given to their children and adolescents.

“When people are aware, it makes the services easy to access. Many people talk about other things on TVs and radios but they don’t take about TB. We have to tell people TB is real and a killer disease. You can also inform them in case someone sees the symptoms they should be screened for TB”. Medical doctor 01.

At the institutional and organizational level, participants preferred to have convenient services as a facilitator for the initiation and completion of the treatment. This was in terms of having TPT appointments scheduled on the same days of ART refill so that they can have all the drugs on the same appointment as this will reduce the time spent at the clinic and cost of repeat visits.

“The other issue is integrating those TPT refills with their usual clinic visits and community services so that they can readily receive the drugs at times without even wasting much time and transport to come to the clinic”. Medical doctor 02.

Among the healthcare providers, it emerged that many young people preferred to have the drugs taken to them so that they don’t have any excuses of not coming to the clinic for treatment.

“Also initiating TPT delivery models that reduce the transport costs and avoid missing clinical appointments and doses. Also to make sure their drugs are delivered before they are out of stock”. Nursing officer 01.

Besides the convenient services, health workers recognized mechanisms of following up the patients initiated on TPT or reminding them when to take their treatment as facilitator for the completion of TPT.

“We need to make mechanisms of follow ups when you put someone on TPT, you have to check on them to see how they are doing sometimes when you tell them to take the drug on Sunday it means they will even shift the ARVs to the same date”. Epidemiologist 01.

Health workers also cited frequent and friendly communication with children and caretakers in terms of the health talks at the clinic, calling the patients through the mobile phones and receive their feedback.

“Another thing is when you relate with children they bring out their challenges where you share and help them out. Smoothly they can cooperate and complete the six months’ TB preventive treatment". Study counsellor 01.

“With the care takers, it is just a matter of explaining to them. It will not be hard for them if they have understood the importance of TPT and even the challenges will be less. The information should be explained in a way which is understood.” TB community linkage facilitator 01.

At the structural level, what emerged was having national policies and good performance indicators at the health facilities that are developed to create demand for the TPT among CALHIV has a great advantage and facilitates TPT uptake.

“Demand creation, tasking health workers. We have our weekly performance review and TPT is among the many indicators we track. Ministry of health asks us how many people are on TPT which helps the health worker to improve on performance and this will facilitate the uptake of TPT”. Medical officer 01.

Regular auditing and identifying the challenges and weaknesses at the facilitate level in relation to the prescription of the treatment emerged as a key facilitator for the uptake of TPT among CALHIV.

“We have reached that level where we appreciate if you find your health workers are not performing well, sit down as a unit and ask yourself on the weaknesses. If you planned to start 56 participants on TPT this week what happened, open the file and do file audits. You will discover interesting things other than patients missed to come or ask the pharmacist why were you not prescribing the drugs when there was even an alert”. Epidemiologist 02.

The following themes emerged as barriers to TPT initiation and completion at patient-level, structural, community and interpersonal levels.

We found the following individual-level barriers to TPT initiation and completion. One of the emerging barriers to initiate or complete their TPT was the stigma associated with taking TB or HIV drugs. The fear of being seen taking many pills on a daily basis was cited as affecting their emotional well-being and mental health.

“Stigma will always be there and I think it’s a reason why so many kids out there fear. Personally before, I didn’t have any problem taking my medicine. So when the stigma started I stopped taking medicine, I stopped caring, it really caused me a lot of mental damage and trauma”. Male Adolescent 18 years.

Where there is limited privacy, taking the treatment would be difficult. Participants also mentioned that they would fail to come for their HIV clinic appointments, for fear of being identified as HIV patients or TB patients.

“…the main challenge is the stigma of HIV which is a leading factor in the community. Some of them fail to come for their appointments because of stigma. They don’t want to be identified as HIV or TB-positive”. Medical officer 03.

The fear of drug-related side effects was reported as a key barrier to starting TPT. Participants expressed their fear of taking TPT treatment for fear of side effects based on their past experiences with different drugs. At TPT completion, experience of side-effects like dizziness and nausea emerged as barriers to TPT completion.

“It would make me feel nausea or feel like vomiting, headache and dizziness. Me I decided not to take them anymore… I even didn’t tell anyone”. Male adolescent, 12 years old.

High pill burden coupled with poor drug adherence also emerged as key barriers reported by the participants, especially if the child was also on ART regimens.

“Another issue is about the pill burden because these are people who are already on ARVs and then they are added more pills for TB so it becomes a lot for them”. Nursing officer 3.

“The biggest barrier is adherence because it’s still a challenge to even those that are HIV negative. There are clients who are not used to taking treatment and if the treatment is for six months there will be a challenge of commitment to take the drugs every day.” Medical officer 03.

Among the caretakers, it emerged that pill fatigue created by taking tablets when a person is not sick with TB, caused many adolescents to miss their doses and some did not complete, even though they reported taking the drugs when it is not true.

“Some children fear taking drugs and time comes when the child is tired and no longer wants to take the medicine. … the child can pretend to be taking the medicine when it is not true because the child got tired of taking the drugs”. Female Caretaker of 8-year-old child.

“That the medicine was a lot, and the child got tired of it, so she didn’t complete. “Sometimes she could say, “it is just for prevention, I will not take it”. The fact that the child didn’t have TB, she could not care at all”. Female caretaker of 15 years adolescent.

Caretakers expressed the discomfort of children taking pills with a bad smell, big size, unpleasant color and poorly packaged. Participants said that a pill with no smell, small size and attractive packaging would be easier to swallow.

“One, the smell of the medication might not be really good to the child, the pill size can be too big, you even see and say ooh! Female caretaker to 13-year-old adolescent.

It emerged that some adolescents and their caretakers are “engaged in demanding jobs that may not allow time to collect their medication or they may forget to take it”. Community Health linkage officer 01.

Forgetting to take the additional drugs also emerged as hinderance to complete the TPT.

“…when you work a lot and do not get time, because you are not used to it like ARVs, the busy schedule can also cause you from not taking the drugs. Male adolescent-18 years.

“She is so forgetful. You always have to ask her whether she has taken the medicine. If you are not around, I just know she has not taken and that’s why she didn’t complete”. Female caretaker to a 16year-old adolescent.

At the interpersonal level, the change of caretakers and lack of support mainly from parents also emerged as key barriers to the completion of TPT.

“Some of them like children depend on their caretakers and sometimes we experience changes of the caretakers”. Nursing officer 04.

Among female caregivers, denial or restrictions by the husbands to come to the clinic for refills, also emerged as a barrier for TPT completion among their children

“For those that are married, their husbands don’t allow them to come to the clinic since it was not on the program”. Female caretaker 14 years child.

Financial constraints and lack of food contributed to delay in TPT initiation and failure to complete the treatment. Caretakers expressed concerns that certain medications require a specific diet to be effective, but they struggled to provide the necessary nutritional support, particularly for their school-aged children, which in turn impacted their ability to adhere to treatment regimens, as highlighted by one adolescent’s experience

“Ok the major challenge I faced at school is sometimes I don’t take medicine because I have not eaten. I know the medicine is very strong and I know it will affect my stomach. It will affect me so if am to take it on an empty stomach it wouldn’t be possible. So sometimes I just don’t take it because I know it will cause me effects”. Female Adolescent 18 years.

Failure of the caretakers to disclose HIV status to the children was cited as a barrier of children to initiate and take TPT treatment. One health worker noted that most mothers at home have never disclosed the reason why their children take these drugs daily, and when the husband is around they cannot take their drugs.

“There is also no disclosure especially to the children. So you find when the child doesn’t take the drugs because they do not understand why they are taking the drugs”. Medical doctor 04.

This has also been a challenge to trace TB contacts in families where the patient has never disclosed to the family members and as a result, children in these families miss the opportunity to take the TPT treatment.

“Disclosure is the problem when families have not yet disclosed, and someone comes down with TB. It is difficult to conduct contact tracing, for example on what ground are you asking the family about TB. So it is hard”. Epidemiologist 02.

At the community level, misconception about TPT and Community stigma associated to TB were some of the barriers identified. Further analysis revealed that some adolescents are so inquisitive about drugs and the intended benefit of taking the drugs. However, many are confused with the different sources of information about the benefits of the drugs. In addition, they did not understand how it could work to prevent infection. For example, there was a misconception about the dangers of taking medication when you are well. Some perceived that the government would introduce these treatments as a gateway to reducing their life span.

“Adolescents are very inquisitive. They keep questioning depending on the different sources of information they receive. So some of the questions are like, “don’t you think these are the drugs that stimulate our TB?” Most of them have those questions and I don’t know whether it’s propaganda now they keep saying “the government or the health facilities are trying to make us fall sick quickly and we even google some of these drugs kill the cells that could have protected our bodies”. This affects their TPT drug adherence”. Medical officer 02.

Participants also reported that there was stigma related to TB disease at health facilities and in the communities where patients reside. The situation worsens especially for adolescents in schools where students fail to take their medication until their next appointment because of the stigma from their fellow peers.

“Students may stigmatize you, which at times makes you not to take the drugs or hide it from them that you are not taking the drugs”. Female adolescent 18 years.

“Yes, because they disturb you, they say that one is a TB patient, and they talk a lot. This caused me to miss the refill days”. Female adolescent 14 years.

At the institution level, the long waiting-time at the clinic emerged as a barrier to completing TPT. Participants revealed that they preferred quick access to services without having to spend long hours in queues waiting to receive the treatment.

“It’s just embarrassing, it’s just too much. The long waiting really makes me feel like opting out. That’s the truth I can tell you”. Female care takers to a 13-year-old adolescent.

“I come early and leave late. That issue made it hard for me. Sometimes I tell her to go by herself but then I remember that she will not give in her complaints. Sometimes we missed coming”. Female caretaker to a 12-year-old adolescent.

Participants were concerned about the attitude of health workers when they are seeking services. This was viewed as a major barrier because they thought if the health workers are rude to the clients, they might not find it conducive to collect their treatment. This was echoed by some health workers who shared the experience that when patients are mistreated, they fail to come back until they are followed up.

“You may find when the person has failed to come on a clinic visit because he was mistreated by a nurse and has not been listened to. Then the person concludes by saying I will not come back”. When it comes to the next appointment, they don’t come back”. Medical officer 05.

Health care workers forgetting to prescribe the drugs at refill visits emerged as one of the barriers to TPT completion.

“Also to the prescribers, someone might have taken TPT like for three months and when they report back, the prescriber forgets to give the refill to add up the six months. So, a patient ends up missing the three months and restart the treatment again”. Medical officer 01.

Health care workers also commented that health facilities may lack essential medicines, and clients are advised to buy from private pharmacies which hinders completion.

At the structural level, participants reported that if the clinic was not within easy reach, they found it a problem to pick their drug refills. This required them to travel long distances with costly transport.

“Transport also affects us, there is a time when you have to come and get treatment but when you don’t have money and that’s why some people fail to come”. Female care giver to 12-year-old adolescent.

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