3.1.1 Poor taste.

The poor taste of the pediatric ART was a salient theme among both caregivers and providers. Participants described how the bitterness of ART contributed to poor adherence, child refusal of the medication (running away/hiding, spitting out, vomiting) and ultimately strained the relationship between the caregiver and child. If the child vomited or spat out the ART, some caregivers discussed not knowing how much medication the child received and questioned whether they should add an additional dose.

“The palatability is not good, and as you know, children love tasteful things and when you give them drugs that are not tasteful, they spit it out. It becomes difficult to administer the drug, so you don’t even know whether the child or children have gotten the correct dosage.” (KII_ODS_KII07)

Because of the medications poor taste, administration was often described as a “battle”, with children refusing to take the medication, getting anxious around times of medication administration, and spitting out the medicine because of its poor taste. Many described how their child would run, hide, fight, or cry due to the unease around ART administration. “It reaches within a point where if the child sees the mother taking the bottle, he/she will just run away crying that the medication is bitter and that they don’t want it.” (Hosp3_KII08).

Caregivers also described how the process of drug administration not only stressed their child but also caused them stress, anxiety, and guilt and strained the child-caregiver relationship.

They lose control and become unhappy for a very long time to the extent that I could also shed tears because after giving the drugs the baby becomes sullen and sad which makes me question what kind of life my child is going to have. That used to disturb me a lot. It is challenging. We are giving them drugs, but it is challenging. (Hosp2_FGD2_ID04)

To increase palatability, many caregivers mixed the solution with porridge, honey, sugar, or the syrup formulation, but “sometimes the doctors recommend we put it in milk or porridge, and when they notice it’s in the porridge, he won’t take it. And when dissolved in milk, he won’t even take a sip.” (Hosp1_FGD1_ID01). Caregivers described how adding sweeteners helped ease anxiety around administration, but they could not always afford the mixers, making administration even more difficult when they were unavailable: “She only likes tea, and it becomes hard for us, sometimes we don’t have sugar, because of lack of money and the child has to take the medication so this one is usually a challenge.” (Hosp2_FGD1_ID03).

Caregivers also described different ways in which they could enhance their child’s cooperation through bribes or threats. Caregivers used instant rewards like sugar, honey, and phone time, or future rewards to motivate medication adherence: “I have to entice the child with a promised gift. I have to promise her that after taking medication, I will buy for her French fries” (Hosp2_FGD3_ID08). Although many caregivers utilized bribes, some discussed how bribes can be counterproductive if they cannot be maintained and provided every day, as their child would refuse to take the medication without the bribe.

“I don’t like giving mine honey… because when I don’t have the honey and I must give the medicine, she will ask for honey… .” (Hosp1_FGD2_ID06)

A handful of caregivers explained that their child responded best to threats of either physical violence or restriction of leisure activities: “The child usually starts crying once he sees the medication so I have to scare the child by holding a cane so that they can take the medication.” (Hosp2_FGD3_ID09). The caregivers who use threats during administration expressed an increase in their anxiety around ART but continue to do it, as it was an effective way to increase cooperation.

3.1.2 Complex preparation and administration.

Caregivers described how the process of preparing and administering pediatric ART could take up to an hour to complete, twice a day, which placed a large burden on them. Tablets were described as the most complex to prepare, requiring them to first cut and crush the tablet then measure, dissolve, and mix the formulation. Each of these steps introduced opportunities for error.

“I prepare porridge and then crush the medication then I take porridge and pour on the bottle cup and add the medication I had crushed, once I do this, I add porridge on top then give the child, I divide the medication into two, I give the first half first then the rest again with porridge, because when taken like that it is too bitter, so that is what I do.” (Hosp3_FGD1_ID06).

When a child was too small to take a full dose, caregivers were required to cut the tablet to give the proper dose. Although the tablets have marks indicating where the tablet needed to be broken, it did not always break in the proper spot, forcing the caregiver to choose whether to underdose or overdose because “Sometimes it breaks wrongly, forcing you to give ¾ instead of a ½ the tablet and …You just give it like that.” (Hosp1_FGD1_ID03)

After measuring the proper dose, the tablet was crushed and dissolved in water. However, tablets were described as difficult to crush and did not dissolve well, leaving the mixture sticky and layered: “It is hard for him to swallow and when chewing it sticks on his teeth. Sometimes he even spits the tablet. (Hosp1_FGD1_ID04)”

Given it’s complexity both caregivers and providers preferred medication administration to be done by the same person each day. Occasionally caregivers described how they must delegate the task to a trusted family member, friend, or older sibling that was aware of the child’s HIV status. They explained how the complexity of medication preparation and administration led them to “think that they might not give the drug well, so I have to call and confirm that the child has been given medication. (Hosp2_FGD3_ID09)” Providers specifically noted that children living with HIV with primary caregivers who rely heavily on secondary caregivers, tend to have higher viral loads at checkups. This can be due to knowledge gaps, forgetfulness, and complexity of administration: “knowledge gap is there since the grandmother is not that learned so maybe sometimes reading the instructions is not easy for them, and they also have other priorities to attend to (Hosp2_KII04).”

Caregivers across all focus groups expressed a strong desire to keep their child’s HIV status private from those in the community, only disclosing the status to close friends and family, due to the stigma surrounding HIV. Fear of disclosure due to complex medication administration process made traveling difficult for children with HIV and their caregivers, as their caregivers struggle with how to carry the medication and properly prepare and administer it discreetly. Caregivers explained that traveling regularly made them question whether they should delay medication administration or risk disclosing their child’s status.

“When there is a funeral at home and you attend it, when it comes time to give the child medication and there are some relatives who are unaware of your status, when you take out the medication to give to the child, they ask a lot of questions. It forces us to skip giving the child their medication to avoid the questions.” (Hosp2_FGD2_ID03)

Furthermore, this complex preparation and administration sometimes interfered with daily schedules, especially in situations where caregivers worked early mornings or late evening or if the children were in school. In the morning, the difficulty came if they needed to re-administer the medication if the child vomited, and in the evening, the difficulty was with getting home at the proper time to administer the medication.

“I also had a challenge with the timing, especially if the child is going to school…you find that to administer the drugs, the child needs to eat, and sometimes the child will vomit after taking the drug… where you’ll have to wait for a while, before re-administering the drug…. and maybe you are running late.” (Hosp1_FGD2_ID01)

Together, the need to administer medications twice daily, the complex process of preparation and administration, and the “battles” that occurred at medication administration times, presented multiple opportunities for participant’s HIV status to be discovered by neighbors and family members. Caregivers explained many ways ART administration can inadvertently disclose their child’s status including: the sound of the pill bottles rattling in their purse, traveling monthly to refill medication, not allowing visitors in the house in the evenings, and having the child repeatedly question why they need daily medication.

“So, when I want to give the baby the drugs, I always like to be alone and when I hear footsteps approaching; I’d want to know who it is. I just tell them I’m a bit busy and tell them to wait a while until I’m done. Personally, I’m not scared but this is my child’s life and her privacy.” (Hosp2_FGD2_ID04).

As caregivers begin the process of HIV disclosure to their child, either in part or in whole, it allowed the children to take part in their health and hold some responsibility. Once children understood the importance of the medication, the caregivers explained how it aided in the process of administration, even if their children still refused to swallow tablets whole.

I told mine that his body is invaded by viruses, and the drug is meant to make them inactive. If he does not take his medication, the virus will become active and affect him. He is well informed and aware that he can get sick if he does not adhere to his medication. (Hosp1_FGD2_ID03)

Caregivers with older children explained how the process of administration got easier with age. Not only were the challenges of taste and cooperation were minimized among older children who were able to swallow pills whole, but caregivers explained the children as young as six or seven had begun taking responsibility for their own or their sibling’s medication adherence.

Since one is 7 years old and can read, she is even able to administer the medication to the younger sibling, as she takes hers.

3.1.3 Storage.

Of the medications discussed, all required a storage environment that was cool, dry, and away from direct sunlight, with the syrups specifically requiring refrigeration. Providers discussed how improper storage of the medication led to a decreased efficacy of the drug. “So actually, that has led to high viral loads because they are taking medication that not… that is not well stored. The condition has been compromised, the quality.” (Hosp2_KII08).

When caregivers did not have access to a refrigerator in their home, they described how they improvised cool areas to store the medication. Caregivers stored the medication in a cool jug of water or in a sandy hole in the ground. Each of these storage methods required frequent attention to ensure the medication environment does not get too warm and will not be discovered by young children or visitors.

“I took a tin of sand and water and kept in in a cool place in my bedroom, so once I had sealed the bottle tightly, I would insert the bottle in the water, so I made sure that I kept on changing the water so that it does not become warm.” (Hosp3_FGD2_ID03)

The strict storage environments also made it difficult in times of travel, as these strategies were not discreet and impossible to maintain on public transport. Tablets, however, could be kept in drawers, cupboards, or even in a handbag while traveling.

3.1.4 ART refill frequency and stockouts.

The frequency of ART refill varied depending on child age and current viral load, because providers utilize medication refills as checkups to monitor weight-based dosing and medication adherence. Younger children and those with high viral loads had 2-week refill appointments, while the others varied from one to two months between appointments. Providers utilized refill appointments to check adherence by pill counts. Providers emphasized that an individualistic approach to each situation was important in determining the frequency of ART refill. The frequent refills posed multiple challenges for caregivers, as they had work commitments and responsibilities outside of the home.

“There was a time that every month, my two girls had to miss their classes because of going for the refills, but it reached a point where I started skipping going with them to the clinic. Whenever they ask, I would tell them that, they were sitting for exams…I came all alone for about 5 months. You know, it even aroused my neighbors’ curiosity, they would always ask; “What’s the matter that makes you take the children to the hospital every month?” (Hosp1_FGD1_ID04).

Many caregivers struggled to get fare required for transport, getting time off from work, and making their child miss school. The caregivers felt obligated to justify why their child was missing school and why they were missing work: “Also, it is very challenging to the school going kids. You will lie to the teacher today, but what will you tell him tomorrow?” (Hosp1_FGD1_ID02).

Providers described how supply stockouts or shortages exacerbated the complexity of ART administration. When a pediatric drug stockout would occur, the providers were forced to hand out adult versions of the medication, which led to prescribing large, bitter pills that were difficult to accurately dose. Supply shortages would require caregivers to (1) increase frequency of trips to the hospital to collect smaller quantities of drugs, (2) seek drugs from private institutions at a cost to them, or (3) skip doses.

“And the challenge we have now … there is low supply or there are no pellets around. What we have remaining in form of lopinavir is now the bigger tablets for the adults. In that situation we are stuck on what to do. Because you cannot resolve to maybe going to the bigger tablets and breaking it. You won’t know the exact quantity that you have given them. So, supplies are a challenge.” (Hosp3_KII06).

In times of supply shortages, children could be prescribed a syrup and tablet at the same time, or to be switched from one to the next at refill appointments. Providers noted that a child on multiple formulations led to confusion and mix-ups on administration. They emphasized that caregivers did the best they can with the time/skill they have, but improper handling of the drugs still led to suboptimal outcomes. For example, certain tablets cannot be crushed, but “here is a situation whereby there is a dilemma between giving a whole tablet and the child will refuse to swallow completely and it would go to waste or you crush it and compromise the effectiveness of drug and at least deliver something to this child (Hosp3_KII10).”

3.1.5 Challenges to adherence: In context.

The many challenges discussed above were accentuated by financial constraints, religion, educational background, work status, and responsibilities outside the home that affected the caregiver’s ability to appropriately administer ART: “Most of these clients you find that from where they come from, they are not financially stable (KII_ODS_Bondo_02).” It was not uncommon for the caregivers to have scarce resources and be forced to choose between whether to spend money on transportation and medication or food: Sometimes the caregiver doesn’t have money to come to the facility and completing tasks of the caregivers. (Hosp2_KII05).

The topic of access to information, education, counseling, and knowledge influenced provision of pediatric ART was a common occurrence in the provider interviews, but not as salient in the caregiver focus group discussions. Providers documented the challenge with proper measuring and administration of medication via primary or secondary caretakers who were illiterate or had a low education level: “I would not say illiterate for lack of a better term, but the level of education determines if they dispense the right volume, so maybe the child is overdosed or underdosed because of lack of knowledge on how to titrate (Hosp3_KII03).”

In addition to challenges with administration, a lack of knowledge about HIV and opposing religious beliefs made it difficult to convince caregivers that their child requires medication. Providers mentioned that these caregivers can go through a denial stage where they do not believe their child will become sick from HIV or need medication until opportunistic diseases takeover: “Some of them will tell you that their church does not accept use of medication, so the child and mother will not use the medication for a long time, so if they notice they have been overwhelmed by opportunistic diseases, that is when the lady or the child is brought back to the clinic, then you start again from there.” (Hosp3_KII01).