Background
Methods
Study design and setting
Participant selection
Data collection
Data analysis
Results
Characteristics of the study participants
Characteristic | Frequency (N) |
---|---|
Age in years | |
15 to 25 | 4 |
26 to 34 | 10 |
35 to 49 | 16 |
> 50 | 7 |
Sex | |
Female | 29 |
Male | 8 |
HIV Status | |
HIV Positive | 28 |
HIV negative | 9 |
Relationship to Child | |
Biological parents | 25 |
Related to child | 9 |
Well wishers | 3 |
Place of residence | |
Urban | 21 |
Rural | 16 |
Directly Observe Medication | |
Yes | 32 |
No | 4 |
Lives with the Child | |
Yes | 35 |
No | 2 |
Occupation | |
Peasant Farmers | 12 |
Petty Trade | 14 |
Housewife | 7 |
Professional | 2 |
Students | 2 |
Challenges that caregivers face in supporting virally non suppressed children in the IAC program achieve viral suppression
Challenges faced by caregivers in supporting the children to attend and complete the sessions in the IAC program
Theme | Subtheme | Number of respondentsa |
---|---|---|
Individual challenges | Fear of death of the child |
5/37
|
Competing Priorities | 20/37 | |
Discouragement | 4/37 | |
No perceived value of sessions | 10/37 | |
Logistics | 20/37 | |
Health System Issues | Poor quality of counselling | 15/37 |
Long queues at the counsellor’s station | 18/37 | |
Unfavourable appointments for school going children | 23/37 | |
Lack of reminders to the caregivers |
6/37
| |
Early closure of counselling services at the facility | 9/37 |
I usually have fear. Fear that this time round, my child might die. Then when I interact with other mothers, they tell me that this situation can actually be overcome. Then I gain the courage to go and see the counsellor. The biggest problem is fear.
Sometimes you find that we are not self-employed. We have to go out there and look for the children’s school fees, at the same time we have to bring the children to the health facility and you have to seek for a whole day-off from your bosses.
The reason I avoid going to the counsellor is she is always asking the same question why, why, why, so you say, am I going to go back and she asks me the same thing? She makes you feel like you are doing nothing yet you are doing your level best to ensure your child gets better.
When you arrive at the health facility late, they tell you that you have come late when the counselors have already left. So they tell you that they are going to note in your file that when you come for the next appointment, you have to see the counselor first.
Challenges faced by caregivers in supporting the children to improve adherence to the ART medication
When we are home with the children, we take the responsibility to ensure that they swallow their drugs. If we are not home, the children sometimes use this opportunity to miss taking their drugs. They at times throw the drugs away and lie to us that they swallowed them.
Sometimes my son goes on school trips and comes back after 9 pm yet his evening dose is at 7 pm. This affects him.
The children’s drugs are so bitter. One time I was tempted to taste my baby’s syrup and I was shocked to find that it was so bitter. I wondered how my daughter felt every time I gave it to her. I then understood why she sometimes refused to breastfeed or to even take her breakfast after taking the drugs.
The counsellors always advise us to never give the children drugs on empty stomachs. However, I usually find myself in a position whereby it is time for the child to take the drugs but I have no food to give them. Sometimes the food is just not yet ready. Therefore, I wait until it is ready, feed them and then give them the drugs even though it is already past time for them to take the drugs.
Our mother is seriously struggling and it is usually hard for us to get something to eat. Our brother sometimes goes to school without any money to cater for his meals at school and ends up coming back very hungry in the evening. ….One time, our property owner entered our house and put all of our property outside and then wanted to sleep with me so that we do not have to pay rent anymore but I refused.
My child always asks why he swallows drugs every day and yet the others do not. I keep telling him that it is because he needs the drugs to stay alive. I cannot tell him the entire truth because the counselors told me that there is a particular age at which I am supposed to disclose to him.
….my child started on ARVs when he was 6 weeks old. He is now 12 years old, I have struggled to get him to this point. He should be able to ensure that he takes his drugs by himself now.
Much as we attend the counselling sessions, the truth is that we the caregivers do not always put into practice what we discussed with the counsellor during the session… but just continue with what we were doing before.
… they say that they fear taking the drugs while school because their colleagues always talk about them or laugh at them or even ask them why they are taking the pills.
I used to insist that my 12-year-old son takes his medicine despite being tired of the drugs. One day he told me, “Mother you knew you were HIV positive when you were pregnant and you refused to take the drugs, now you infected me and are forcing me to take the drugs.” That was the last day that I ever forced him to take drugs.
Sometimes I look at my child and I ask myself, will my child grow? Will my child become someone? Can he travel the world? I hear they do not give visas to [HIV] positive people. Will he attend good schools? Then I feel sad.
I have three children, all [HIV] infected, I am the mother, father, aunty, uncle and grandparent. My family rejected them when they discovered they were positive. I have to fulfil all their needs.
For me, my child has started refusing the drugs. She says that given the period for she has been taking the drugs, she is tired of them; she asks me why her heart condition will not heal. Then I tell her to swallow her drugs or else she will die. She then says that if her heart condition will not heal she will then stop taking the drugs. She wishes that she would die.
For me, my child is a big man now, he cannot be forced to take his drugs, I can only try but he doesn’t always listen. He has a group [peers] that he listens to more than me.
Support that the caregivers would like to receive in order to help the children suppress their HIV viral load
….the various meetings help the children to understand more of their status and what to do, they get motivated to take their drugs after these meetings.
The health workers should come home with us and help us disclose to our partners and families. This will make it much easier on us and get us the help we need from them. We do not know where to start with telling them we and the children are HIV positive.
The counsellors need to ensure that they create a bond between themselves and the children. This will make it easier for the children to go to the counsellors whenever they are required to.
We the caregivers need to accompany our children to the health facilities for their appointments. The children need parental support. It should not only be about providing them with transport to bring them to the facility, asking if they swallowed their drugs and punishing them if they did not.
There should be some income generating projects started up here at the health center. We can engage in some of these activities when we come here as we wait in the queue since some of us are stay at home mothers. Earning something through these projects could help lift some weight off of our shoulders.
There should be a way of reducing the large pills to smaller ones so that they become more appealing to the children. The sight of six big tablets is so discouraging for a child. The thought of having to take them twice a day worries them a lot.