Barriers and facilitators to paediatric adherence to antiretroviral therapy in rural South Africa: a multi-stakeholder perspective

Figures & data

Figure 1. The four systems of Bronfenbrenner's EST.

Table 1. Examples of the interview and FG question schedule.

FG schedule: Traditional healers

What do you see as the most important factors that act as barriers to caregivers when they provide children with their medications?

What do you see as the most important factors that act as facilitators to caregivers when they provide children with their medications?

Do you generally think that caregivers provide medications in the way that they are supposed to?

Why do you think they might not be providing the medication in the correct ways?

FG schedule: Caregivers

Please tell me about your experience with giving medicine to a child as their caregiver.

How would you describe your relationship with the child?

What difficulties do you think the child has in taking their medications?

What are the main problems that you have when administering medication to the child?

Interview guide: Health care providers (nurses and doctors) and HIV counsellor FG

Please tell me about your experience in treating children with HIV.

What do you think is the hardest part for children in taking their medication?

What is your experience of the role of caregivers in paediatric adherence?

Probe: interactions at clinic and home (do children listen to them; take medication when supposed to?)

Following regimen at home?

Knowledge of regimen and health literacy (do they struggle to understand how to administer the medication?)

Table 2. Characteristics of caregivers (n = 11).

Age of caregiver
Mean (SD) years	32.9 (16.3)
Caregivers relation to child	N (N = 11)	Per cent
Mother	7	63.6
Grandmother	3	27.3
Relative	1	9.1
Gender of child
Male	3	27.3
Female	8	72.7
Caregiver marital status
Single	8	72.7
Married or living in significant marriage-like relationship	2	18.2
Widowed	1	9.1
Highest level of education of caregiver
No formal education	1	9.1
Attended high school but did not complete Grade 12^a	7	63.6
Completed Grade 12	2	18.2
Graduated from university, college or technikon	1	9.1
Employment
Unemployed	11	100
Income
No income	1	9.1
Less than R12000 per month	3	27.3
More than R12000 per month	1	9.1
Grant R280 per month	4	36.4
Grant more than R280 per month	2	18.2
Received paediatric pre-ART HIV education
Yes	9	81.8
No	2	18.2
Viral load (VL) status of child
Suppressed^b	6	54.5
Unsuppressed^c	2	18.2
New enroller^d	3	27.3

^a Grade 12 is the final year of secondary school; ^bVL < 400cps/ml after 12 months on ART; ^cVL > 400 cps/ml less than 12 months on ART; ^dOn ART < 6months- not yet received first VL.

Table 3. Themes and sub-themes identified through thematic analytic techniques.

			Interviews (selected quotations)		FGs (selected quotations)
System	Description	Themes and sub-themes	Doctor	Nurse	Counsellor	Traditional healer	Caregiver
Individual	This system involves characteristics specific to the child that influences adherence to ART.	Medication difficulties Palatability and side effects Large volumes of medication and swallowing tablets Blood tests	The children are certainly nervous because they have often had blood tests done and the thought of coming to clinic is often quite worrying for them [Doctor 2].	So that's the, problematic one because they can say children will drink all the other medication but when it's this one they can even identify the bottle and then decide to close the mouth and even when they force them they spit [Nurse 2].	Sometimes they come in there, they're just feeling they don't feel like taking the medication. They can take it and they're doing like vomiting the thing. They spit the thing and you can't see that they didn't swallow that thing and that's a problem [Counsellor 4].	One lady mentioned that the child was refusing to drink the medication so she just opened the capsules and diluted them and the child now drinks without any problems [Traditional healer 1].	The child does drink the medicine. It was just the [LPV/r] that was a problem but then I started mixing it with juice [Caregiver 3].
Micro-	This system involves the child and his/her interactions with all those involved in treatment and care: caregiver, counsellor, nurse, doctor, traditional healer.	Caregiver–child relationship Grandmothers as caregivers Denial amongst fathers Characteristics of the caregiver	Yes because in the Zulu culture the man is the head of the house. Sometimes when the father is around when the mother takes the child home with the medication you'll find that the father will refuse the child taking medication […] and say my child is not sick so they shouldn't be getting this ARV medication. [Doctor 3].	When the weight increases the dose must increase so you have to explain to the granny how to give the medication to the child and sometimes it becomes difficult for them because they are very old so the measurements, how to measure properly for the child. And they usually tell that children usually maybe go away for playing and the child doesn't come back if it's time for the medication [Nurse 4].	and these days we know that most of the children – the caregivers are their grannies who do not understand, you know, the measurement [of the treatment doses] and especially with children another thing is that as the children gain weight, the dosage has to change [Counsellor 3]	Like in one of these days one [caregiver] came to me saying that she does not know how to tell the father that the child is positive. I told her to try and tell him because the child is in trouble, he needs to know [Traditional healer 6].	When I first found out that the child has a problem the mother had not told me and it hurt me that my son could have died without knowing anything so I kind of like hated the mother at first because she had not told me but then when I started giving the child the medication, it came to me that since this was her first child, she didn't really know what to do because she was still young so I forgave her because she is a still a child and her first child is sick [Caregiver 3]
Meso-	This system involves the interaction between all the members of the micro system. For example Caregiver–counsellor relationship.	Caregiver–health care worker interaction Language barriers Multiple caregivers	We try to find out what's happening and you try to you know repeat a question or ask them do you really understand and sometimes they'll say no and you ask the nurses to translate again. Obviously I don't speak any Zulu, I also don't understand any Zulu so whether the translation is correct I also don't know[Doctor 5].	You find that some children their mothers died long ago so they are brought by different people. This month you see this one, next month you see that one so that becomes a problem because what you have talked with this person next month the child is brought by another who doesn't know [Nurse 4].	Even when you tell her – just say ma'am I'm only there for this week and I won't be there the following week. Even if you want to give this person like the proper information but it's useless because it's pointless because this person is not going to be there in a few months down the line you know [Counsellor 10].	Mostly the children are left to be raised by the grannies and they [the mothers] do not make them aware that the children are positive [Traditional healer 2].	Well I have never had a problem with the clinic, actually speaking, those people who work there motivate you and they advise you, some people get offended but at the end they realize that they are getting good advice at the clinic [Caregiver 2].
Exo-	This system involves the influence of the family network and clinic context.	Experience at the clinic Adherence counselling and training	It's all very well we find out the information, but you then have to have … again equip the counsellors with the skills to …' how do you address a case if you hear or A you hear B or C: this is what you might do or you might discuss with the patient [Doctor 1].	This must process [adherence counselling] must be done continuously. It mustn't be once [Nurse 4].	You know, so it's – it's because of I mean I think there should be like a constant like educational sessions in terms of how they should continue, you know taking their treatment [Counsellor 2].		Me for myself, I am also positive and I think 2 classes are enough because I already know about HIV. I didn't know how to drink the medication and that is what I wanted to know so 2 classes for me are enough [Caregiver 3].
Macro-	This system involves the influence of poverty and culture.	Poverty Food insecurity Traditional medicines	So last week I had a lady at the clinic and child had a raised viral load, couldn't get to the bottom of it, … turns out they tend to run out of money from about the 20th of each month so basically for about a third of the month, the child, …, refuses to take medicine if there is no food or hardly any food [Doctor 2].	They said this child is eating more if they're taking this treatment so at home there's no food [Nurses 3].	And there are some traditional healers that they tell the people that if you use my medication you will be cured … [Counsellor 5].	Yes we do give them medication but we ask the care giver on the times when they give them the ARVs and allow 1h30 min for them to take the traditional medication so not to interrupt the process of the ARV's working on the child's system [Traditional healer 6].	Well I have never been to a traditional healer because when the child first started to get sick her body temperature was very high so I just took her to the clinic … [Caregiver 5].