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themselves without anyone changing them. Some families see you and they just say to you
‘here is your person’ they leave you to do all the work and they do not help out.”
(Focus group 2, organisation B)
To deal with this challenge, volunteer caregivers sometimes used force to get in to the houses
of those that hid their patients inside. One participant gave an account of a time when they
used force to enter a house of some family members that hid their sick relative in the house:
“Some family members ask us that who sent you? Who told you that there is someone sick in
this house? If we find such people who hide their patients in the house, we do not just leave
them we persist by doing whatever we can to make sure that the person gets help. There is a
house where we went to, we were four of us. The husband had a stroke and HIV positive.
They then locked him inside the room. If you asked the women how they were doing she
would say that they were well. So we decided that this cannot go on. So we went to see this
lady. When she saw us coming she locked up the door. We knocked and there was no answer,
until we sent her child who was playing outside. When she opened for the child, we got in,
she tried to push the door against us, but it was too late we over powered her. We got inside
the house and we asked the patient how he was, he just burst into tears and cried because the
wife had been hiding him for a long time not saying that he was sick. This really helped
because the husband is now better. He went to the clinic to be stretched he even came to
thank us for the good work.” (Focus group 10, organisation J)
Volunteer caregivers also educated the family members how to love, care and support the
patients. They explained their role even to their clients and those who shunned help in order
to try and help family members to stop stigmatising HIV/AIDS patients. They also
encouraged them to go for testing and to seek medication:
“Another thing is we try to work hand in hand with the family. When we get to the household,
we don’t take the whole burden of caring for the person. We explain to the family that the
patient is still a human being, their relative and part of the family; it is not the end of the
world to have HIV/AIDS so they must not stress or feel ashamed to anyone. They should not
leave the patient for us only but he/she is for the whole family also. They must not rest
because we are now here. We have to work together. We teach them how to love and care for
them in the end when they see all this they stop hiding their patients to us and you see them
that they become grateful and happy. They begin to care for their patient and most of the
patients have hope and even recover quickly. So some families change but some they are very
difficult they still leave their patients to die fast.” (Focus group 7, organisation G)
Volunteer caregivers from one community were concerned about some male patients who
shunned help due to fear of being stigmatised. As a result some patients died from infections
that could have been prevented:
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