We conducted five FGDs with 30 caregivers and seven providers between December 2018 – February 2019. The number of participants in each caregiver FGD ranged from 4-11. The caregiver FGDs lasted over two hours on average and the provider FGD was conducted over five hours in two sessions. The median age of caregivers was 37 years (IQR 32-45) and 21 (70%) were female (Table 1). Most caregivers (68%) interviewed were biological parents of the children tested. In the main B-GAP study (89%) of indexes offered testing for children in their households had been diagnosed with HIV over a year prior to being offered testing and only 9% had not initiated antiretroviral therapy (ART).
Table 1: Participant demographics
Caregivers
N=30
|
|
n (%)
|
Age Category a
|
18-25
|
2 (6.7)
|
25-50
|
20 (99.7)
|
>50
|
7 (23.3)
|
Sex
|
Male
|
9 (30.0)
|
Female
|
21 (70.0)
|
Site
|
Rural
|
15 (50.0)
|
Urban
|
15 (15.0)
|
Test Location
|
Facility based
|
11 (36.7)
|
Community based by provider
|
15 (50.0)
|
Caregiver provided self-test
|
4 (13.3)
|
Relation to child b
N=78
|
Biological parent
|
53 (67.9)
|
Grandparent
|
18 (23.1)
|
Other relation
|
5 (6.4)
|
Non-relation
|
2 (2.6)
|
Providers
N=7
|
|
n (%)
|
Age Category
|
18-25
|
1 (14.3)
|
|
25-50
|
6 (85.7)
|
|
>50
|
0 (0.0)
|
Sex
|
Male
|
2 (28.6)
|
|
Female
|
5 (71.4)
|
Site
|
Urban
|
4 (57.1)
|
|
Rural
|
3 (4.3)
|
a Missing data for 1 caregiver
b Caregivers had different relationships to children that were tested in their households
Three key themes were identified that explain caregivers’ uptake of testing and the decision-making process around index-linked testing: i) inadequate emphasis on paediatric HIV information in routine adult care ii) the relational nature of index-linked HIV testing of children and iii) limited access to facilities once the decision to test has been made. Additional provider perspectives that were unique to those voiced by the caregivers included logistical challenges in locating homes for community testing, follow up and indirect refusals through the provision of wrong addresses and phone numbers.
Inadequate emphasis on paediatric HIV in routine adult care
Caregivers felt confident about understanding the implications of their own HIV infection, but not how HIV infection would affect their children. Although they had children in their care, for some caregiver’s literacy about paediatric HIV was poor, particularly understanding of perinatal HIV and testing for children. This information was not given much emphasis in their routine care, and some caregivers only became meaningfully aware of the need for testing children and the possibility and benefits of testing through their involvement in the B-GAP study. Caregivers reported that the way information was provided in B-GAP enabled them to understand the need to test.
“We had only seen posters about free testing and if you are infected, you start on your medication. However, we had not heard about taking your children for testing, we heard this for the first time from B-GAP” [Caregiver #26, Male, 54]
Participants reported that while information about paediatric HIV testing in routine care is an important first step in encouraging the testing of children, information alone insufficient. A critical step to encourage caregivers to take up testing was being able to apply the pertinence of this information to one’s personal situation. This required more nuanced and individualised information that would enable caregivers to accurately assess their child’s risk.
“With younger children, the ones that you are talking about, maybe those who are 7 and below, their parents were a bit hesitant because they would say; “Where would they have gotten the HIV from?”” [Provider#1, Female,30]
Without adequately tailored information, testing is often not taken up, with delays justified by an incorrect assumption that it is unnecessary. In such situations, testing tends to be done reactively only once illness has developed.
“As for me, I had never really heard it as such, that children can get tested. But…. my child was constantly sick. So, I thought to myself that it would be best if I brought in my child for testing.” [Caregiver #13, Female, 31]
As such, the provision of tailored information provided within the B-GAP intervention was influential in encouraging the uptake of testing. Many caregivers noted that the B-GAP providers explaining the rationale for testing reassured them and resulted in the caregivers having courage to take up testing. Caregivers valued the time that the providers took to convey information and to help them apply it to their individual context. Caregivers emphasised the benefits of allowing time to discuss and listen to their concerns. For some, these conversations extended over more than one encounter.
“I would say that the B-GAP team were an experienced team, who were well taught about their program because they would approach you in a way that make you feel free. One person will approach you and explain what they are doing in a good way that helps you to open up and tell them your status and the team was well trained and open.” [Caregiver #22, Male, 52]
The relational nature of index-linked HIV testing of children
Participants illuminated the complex relational webs that HIV so perniciously affects. Caregivers viewed HIV testing of children not as a “one-off” event but as a process with potential consequences on multiple people and relationships.
They described living with HIV as a lifelong burden which the child experienced from a young age. Index-linked testing would also inadvertently reveal their own status to other family members, and they would have to confront this both with the child and others. Many caregivers who had kept their HIV status a secret from others in their household feared that they might lose the control they had exercised over disclosing their own status.
“I still remember, there was this case uh, of this particular lady who said; “Living with HIV is already a burden to me. It’s quite difficult. So, if you come into my home and test these children, and they come out positive, the assumption will be that I am the one who infected them and that will certainly disturb my family; the makeup of my own particular family”. [Provider #4, Male, 34]
Other reported concerns that would follow a positive HIV test were having to support the medication-taking throughout childhood and disruption of care for other children. Caregivers were living with HIV themselves and for many the potential additional responsibility involved in managing their child’s HIV care alongside their own was undesirable, but testing would at least facilitate access to care. Often caregivers would take time to make this decision and reach a point where they are willing and ready.
“This one lady; she had initially refused, then I had shown her my office because I usually screen them where she was. So, she came in later, she said; “I realised that in as much as I do not want my child to be tested, but I am already on ART, and it is really helping me. I have seen other people die when they are not taking ART. So… I would rather have my child tested so that we know the way forward than to stay in the oblivion age where he/she doesn’t know what is going on” [Provider#6, Female, 24]
Caregivers stated that these factors would impede uptake of HIV testing for children but, importantly, they emphasized that they needed both time and support to work through these concerns and reported that feeling under pressure to quickly move to testing was not conducive to uptake.
The relational dynamics between caregivers were an important determinant of uptake of index-linked HIV testing for children. Caregivers demonstrated that index-linked HIV testing for children requires negotiation with, and the involvement of, different individuals. In some instances, the decision to test had to be a joint decision between two caregivers such as biological parents. In the B-GAP study most indexes were women, who sometimes sought the permission of their husbands for testing of their children. Beyond the relational nature of the decision, there are extensive ramifications that could follow a positive HIV test result, including who is deemed responsible for HIV transmission as well as for supporting treatment.
“Where the father lives in South Africa, those mothers may not accept the idea of testing the child on their own in the absence of the father of the children because when he returns, he may want answers about where the child got HIV.” [Caregiver #11, Female, 37]
While indexes may have been the primary caregiver, they were not always the biological parent of the children living in their households. Caregivers who were not the biological parents, expressed concern about their right to link a child to testing and care and the negative impact that HIV testing of the child would have on their relations with the biological parents.
“If my brother receives a call from me telling him that his child got tested and is now on ARVs, the next time we meet he will certainly kill you” [Caregiver #23, Male, 58]
Regardless of relation to the child the issue of bearing the additional emotional and financial cost of supporting someone who was not their biological child was raised. However, while acknowledging these issues, many caregivers felt they were liable to make the final decision because they provided day to day care of children. There was variation in how caregivers handled the decision-making, a process which would likely take time to resolve sometimes together with biological parents.
“If you are saying that if the children are under your care you would first need to inform a parent in South Africa, what if the child gets sick and needs to be admitted in hospital? What would you do then? In my view, whether the biological parent wants or not I will get the child tested!” [Caregiver #19, Female, 42]
“I live with my grandchildren; my child lives in South Africa. If anything happens to those children, I am responsible. But I am expected to first inform my child, and if she refuses… I would rather tell her after the fact that I did this and that.” [Caregiver #14, Female,53]
“Sometimes we have to take a stand and make the effort to have an open discussion with the biological parents so that it does not become a problem in future. Because it is also a burden to have this opportunity and yet decline to have those non-biological children tested. It is also difficult. So, I need to discuss with the biological parents and inform them of their children’s statuses. I need to be open about it” [Caregiver #10, Female, 65]
In addition to needing to inform biological parents about testing for their children; caregivers who were not the biological parents of the children to be tested noted that the inadvertent disclosure of the HIV status of biological parents was a critical factor to consider in the testing process for non-biological children. Caregivers had to weigh up the importance of testing the child versus the unwelcome risk of doing so potentially revealing the mother’s HIV status, which she may not have wanted to share.
“I feared that if the child who isn’t mine biologically tested HIV positive, I was going to struggle to inform the child’s real mother. Perhaps the mother is positive, and she has not disclosed this to me. Initially it used to bother me, but I resolved that I would tell her since she is my younger sister and I tested the child because the child lives under my care” [Caregiver #11, Female, 37]
Caregivers highlighted the need to engage children themselves in the HIV testing process, particularly older children who were often reluctant to go to the clinic. In these cases, caregivers expressed a preference for community health workers to go to the household and speak to older children directly about HIV testing.
“This option (home based testing) was very helpful to me because I have an older child who always used to refuse to go with me to the clinic, every time I would ask him to go and get tested at the clinic he would refuse. However, when they arrived, they summoned him, and he could not refuse. And they spoke to him in their way and before I knew it, they were holding hands and they seemed to really click” [Caregiver #2, Female, 36]
For older adolescents, caregivers repeatedly mentioned the need to consider sexual risk rather than solely the perinatal HIV infection assumed by index-linked HIV testing. Caregivers mentioned the fears that adolescents may have about disclosing their sexual behaviour by ways of an HIV test. Older adolescents were felt to be old enough to consent independently.
“It’s because they will be afraid, young people indulge and experiment on a lot of things, then that brings in the fear that leads one to decide not to accept this kind of testing” [Caregiver #30, Male, Age-unknown]
Addressing limited access: Provision of community-based HIV testing options
Once the decision to test has been made caregivers often need to bring their children to a health facility. As has been reported in other studies, this leads to out-of-pocket expenditure and loss of income by taking time off work to make the journey.
“I had always wanted my children to get tested but I didn’t have the time to take the children to the clinic” [Caregiver #29, Male, 25]
To address these barriers, the B-GAP study provided two options for testing in the community, which participants noted was helpful in increasing accessibility of testing for their children.
“We were happy that B-GAP would come home. Taking the children to the clinic using a taxi will be costly since I had 4 children that needed to be tested, so it meant us filling the whole taxi as a family to the clinic and back home, this was going to be too costly and that money would be money that we can use at home for a month, this is what was good about B-GAP.” [Caregiver #28, Male, 39]
Provider perspectives: follow up, logistics and indirect refusals
Explicit contributions from providers included challenges surrounding community testing by providers and follow up for caregivers who chose facility testing. Providers noted that sometimes they had difficulty locating households due to inaccurate or wrong addresses and phone numbers provided by the caregivers.
“When you are asking about directions then someone says you turn to the left and in actual fact they mean turn to the right, so until you are now in the road and you call and you ask you said I should turn left and they say yes turn to the left but you realize the actual turn is to the right,” [Provider#7, Female, 40]
The providers did highlight that in some instances they felt these could be indirect refusals from caregivers who did not want to have the children in their households tested. While the study protocol was that caregivers be followed up at least 3 times in order to complete testing some caregivers would provide false phone numbers and fake addresses.
“I don’t know now because if the number doesn’t go through at all, at all! And the number doesn’t go through, you try for the whole month. You don’t know if this number is some number that belongs to him, but is no longer in use, you know?” [Provider#3, Female, 33]
“I don’t think there is anything that could have been done, why I say so is because someone lies and tells you that I stay at this address and they do not stay there.” [Provider#1, Female, 30]
Despite this, however, there were some caregivers who appreciated the follow up from providers to facilitate testing for the children in their households. This follow up allowed caregivers who were indecisive more time to make the decision to test as well as act as a reminder to caregivers who may have forgotten.
“It is very good to follow up because when you sign up with B-GAP people, they will call you, I was called, and they asked when they should come. And I told them I was in the village, when I got back, I never got back to them, but they called me again. And they asked when they should come and I appreciated that because I had forgotten about it, so I think that the follow ups are good. If they had gone stealth, I also would have forgotten about it. So, the follow ups are good, some need scolding,” [Caregiver #14, Female, 53]
“I think it is a good idea to follow up because at times you just agree to be part of the program because you will in a certain state of mind then you set an appointment but then that fear, on the appointment date you decide not to go to the clinic and the clinic staff sees that someone missed their appointment so I think it is good for them to phone you and it will actually give you the confidence that you are dealing with people who are genuine who remembers to call you for a follow up and at times you would just completed a form so that the person does not continue to bother you and in actual essence you were not serious about it, so if they call you it’s now confirmation that whatever the results these people might actually help since they would have made that follow up.” [Caregiver #29, Male, 25]