Caregiver Dependence Is Key to HIV Care in Children: Priscilla Tsondai, MD, MPH

Despite advances in HIV treatment, antiretroviral therapy (ART) uptake remains suboptimal among children. Concluding this discussion with The American Journal of Managed Care^®, Priscilla Tsondai, MD, MPH, technical lead for the pediatric and adolescent program at the International AIDS Society through the Collaborative Initiative for Paediatric HIV Education and Research (CIPHER), addresses strategies to combat treatment nonadherence in children, as well as the structural and social determinants of health that contribute to their access and adherence barriers.

Revisit part 1, where she speaks to improving care gaps in these young individuals and part 2 to learn more about care priorities in children and adolescents living with HIV.

This transcript was lightly edited for clarity; captions were auto-generated.

Transcript

Can you discuss some strategies that might help to improve access and adherence to ART in children?

Caregiver dependence. We need to be making sure we're managing the child, but at the same time being dependent on the caregiver in seeking testing and adhering to treatment and managing with the follow-up. I think we can't talk about that, really, without talking about the social determinants of health that affect a caregiver being able to take care of this child and make sure they are initiated and remain adherent to treatment. But then moving on, I think this has been quite documented in literature in terms of how, for example, lack of resources, how poverty, or how having economic hardship affects families. And I'll say families, because, again, I'm just putting that child in that context that usually they come with the caregiver.

In terms of coming to the health facilities, transportation costs, and then for that child to come, the caregiver has to either not go to work that day or miss a day of work, which usually is not something that they can easily negotiate with probably their employer, and they will then have to miss the salary for that day, for example, or the wage for that day. That makes it a bit difficult for them to miss work for clinic visits to bring the child, and so that affects their ability to seek and maintain regular HIV care for children.

Then also poverty limits access to other resources, such as nutritious food, stable housing, which are essential. We have to look at the child fully, not just looking at 1 component, which is the fact that they're living with HIV. And then access to health care infrastructure, other health care facilities located where the children can access them offering all the services that the child needs to be offered when they have contact. Do they have the health care providers that are comfortable enough to offer HIV treatment to young children, and making sure that when [that] monitoring, in terms of viral load tests, are being done, the samples can be taken to the lab or immediately the results can be provided to the caregiver. And then treatment literacy, depending on the caregiver to fully understand what is being explained to them in terms of the medication, the dosage, the timing, the importance of being adherent and being consistent with the treatment.

Again, stigma and discrimination. I don't think I've not said this in any of your questions, but the fear of social rejection, which can have an impact on how caregivers then access treatment on behalf of their children and adhere to it is an issue in social gatherings. Will the mom or the caregiver be comfortable enough to bring out that bottle at the correct time and measure the medication, etc, so that the child doesn't miss out.

Cultural and religious beliefs, we do know that sometimes they affect how quickly a caregiver then brings the child to the hospital. When an illness is first ascribed to some cultural or religious belief, that delays, and then the child first is sort of managed within the community before they access care and someone offers them HIV testing and the child is put on treatment—so cultural, religious beliefs can sometimes complicate the issue in terms of offering HIV treatment to children.

And then gender dynamics. The power imbalances sometimes can prevent a woman or an adolescent girl from accessing HIV care, and in some cases they will need the consent of their male partner. I come back to those cultural practices before they can take a sick child to the hospital. Even if the partner is away and is not immediately available to give the consent, that also can have an impact. And then adherence to ART needs family involvement; that supportive environment is important as well.

Stable housing for when a client doesn't come back for their medications. Sometimes facilities can actively try to reach out to find out what's going on, so that you know if more counseling is needed or we need to talk about it again—that can happen. But if there's no stable housing, where are you going to find them? Whatever address was put when they first came to the facility, when you go to that address, they've moved or that address is very difficult to find, because it's very informal, that can also affect adherence. Missed opportunities for the health care system to get in touch and reach out where nonadherence is suspected.

I think, in a nutshell, those are the key determinants of health I want to flag.