Table 4 Illustrative quotes by caregivers and health workers on FCCM benefits

Strengthening of family bond

“…We call each other and remind ourselves that it is 7 and we drink our pills…the child also drinks his pills…We put the pills together on the table one for the child and others for us adults so when we are about to drink we give him his pills.” (Female caregiver, age 34, of boy age 8)

“…The child is able to see that the mother is also on medication and the child will be encouraged because the medication is [kept] in the same place.” (Healthcare worker, health clinic)

“Another thing is that there is no more hiding from each other to take pills on time. Even my child is always reminding us that it is now time to take pills, so we do things together. No one to say, eish…now it is time for medication, the child also knows the dates. Even in January the child will come again for the next visit. The family is always free to do things together. It is like a game to us now because we are happy.” (Female caregiver, age 29, of boy age 8)

Increased HIV status disclosure

“I had some difficulties to talk with my family, I was hiding from my own husband about my son who is also HIV-positive, so I didn’t have a way to disclose about my son’s HIV status to my husband. My worry was that he is not the biologic father of this child. But when I came to this program, they explained a lot of things to me pertaining to health and that is when I came to know some new things, I took a sound decision that we need to be one as a family, myself and my husband and the child) and then we began to live a healthy and happy life.” (Female caregiver, age 29, of boy age 8)

“The children, with those who are not [participating in] FCCM you find that there is a problem of disclosure yet under FCCM the issues can easily be addressed. The viral load is suppressed as compared to the patients who did not join.” (Healthcare worker, hospital)

Better care in FCCM compared with standard of care

“And what I like with FCCM program is that, if there is one member who doesn’t drink the medication or doesn’t adhere, the HCWs are able to correct our mistakes, motivate us and encourage us together as a family.” (Male caregiver, age 40, of girl age 13)

“…in case you have forgotten to come to the clinic, they then call you to find out if you still remember about your next visit date. What I can say is that if maybe it wasn’t for FCCM, no one would remind to come for the medication and then you can default in a way or stop coming for the services.” (Female caregiver, age 28, of boy age 10)

“If I may give an example, once we arrive, the nurse will quickly recognize us and see the young one, she will attend to her [the HCW] ‘Auntie’ or ‘Umshana’ (my child). There is that bond between the nurse and the child as they get to know one another or if they meet every time we visit the clinic.” (Female caregiver, age 28, of girl age 6)

“Under the FCCM you address the identified issues one by one and you come up with a long-lasting solution after you have discussed with them because you will have the caregiver around for [the clinic visits with the child] she will tell you the challenges that she might have.” (Healthcare worker, hospital)