Table 5 Illustrative quotes by caregivers and health workers on FCCM challenges

Attending clinic visits as a family

“It becomes impossible, of which some families they have never came together as a family. A child comes in alone to the teen club, parents come in by themselves mid-week to the facility, of which we then don’t meet goals of FCCM. FCCM says we need to see them at least twice a year together but we couldn’t do all that.” (Healthcare worker, health centre)

“The other thing is this FCCM is new to us. Children are used to coming to the facility on their own. The challenges we encountered when we first started the program were that kids get the medication according to their weights, refills for 1 month depending on how the kid has taken the medication and then increase to 2 months. That made the caregivers not to understand why they were now given 1 month instead of 3 months. Since the FCCM was introduced, every caregiver is entitled to a month [of medication]. We try to explain all that to them as we more concerned about the kids’ health and to know what is going on; is there any improvement, we try to monitor everything on the child as she is the brighter future of the nation. (Healthcare worker, hospital)

“The challenges that we always come across are that at times in the family there will be a certain individual who will always send others to pick his/her medication, yet we need to do her/his Labs (tests) if they are already due. As much as you need to see that particular patient, it then becomes a bit difficult for us as health care workers and as for FCCM it was meant for family people to be seen together or schedule the appointments at the same time.” (Healthcare worker, health centre)

Participation of male family members

“I think he knows it, but he does not want to take ART because he ran away even in this facility because they wanted to test him because they know my status and the status of the child.” (Female caregiver, age 32, of girl age 10)

“Males or some males don’t want to come, they don’t want to come with their children or maybe as a family they want to come alone. Others will tell you they work very far in South Africa, so they come on the schedule date, they want their own date so that they come alone. They don’t come as a family.” (Healthcare worker, health clinic)

Health care work service provision challenges

“At times you find it difficult as there are some instances whereby you cannot just ask questions of a caregiver in front of the kid if you will need to fill in the chronic care file, asking a man or woman about things like STI [sexually transmitted infection] screening and family planning model, it is not easy to ask such questions in front of kids.” (Healthcare worker, hospital)

“I think FCCM just needed nurses that were specifically for the program not doing FCCM, refills or everything else. So, we really needed a nurse specifically for FCCM. I just feel like FCCM needed attention, so we really could not focus on FCCM because we also have other things to do in the facility and you find that the people that are not on FCCM they are not taken care of like those who are in the program.” (Healthcare worker, hospital)