Corresponding author: H A Moore ([email protected])
Dr Hazel
Ann Moore is a general practitioner based in Khayelitsha, Cape
Town, South Africa
As part of my work at a primary care clinic in Khayelitsha, I started the paediatric arm of the antiretroviral therapy (ART) service in our clinic six years ago. When I first started, many children were being cared for by family members or foster carers because their mothers had died. This is now the exception, as most mothers receiving ART survive. Today, the numbers of patients are still relatively small compared with those in many other programmes, although there are now over 210 children, with a further 10 - 15 adolescents having graduated to the adult ART section. Over time, this had the advantage of allowing me to get to know the families and essentially to function as their general practitioner. In terms of the model of care, a doctor (myself) starts all the small children on ART and then passes their care on to the nursing sisters when they are stable and about 3 years of age; I continue to see the children with clinical problems until they are stabilised. This approach is obviously not possible in many parts of our country, but has had many advantages.
Some of my reflections on spending time in primary care services for paediatric HIV include:
I have cared for a lot of
children from a local children’s home who have made a brilliant control
group, as they are all suppressed as a result of getting their
medication on time every day. This demonstrates the importance
of adherence to treatment regimens. I have even used the home
temporarily for children who were failing their regimens – once suppressed, they were
returned to their families, who had in the meanwhile been
educated to ensure better adherence. One child, placed there
voluntarily by her mother because of concerns about carer
adherence, continued to show a detectable viral load. Having
proven that it was not due to a lack of adherence, we could
confidently place her on treatment with second-line drugs; she
subsequently suppressed, indicating that she had developed
resistance.
Disclosure is often
a problem, by the mother to her family as well as disclosure to
the child. I believe that we need age-appropriate support groups
to assist in this. Small children grow up into big children and
adolescents, and they need progressive disclosure so that they
are fully informed about their status well before puberty.
Disclosure is often a particular problem with the very young
mother (who may be scared to tell her own mother her status), or
the working mother (who may not want her employer to know and
does not want to take time off work to come to the clinic; the
family may be dependent on her work income and so she does not
want them to worry about her health status).
In contrast to previous years, the prevention of
mother-to-child transmission (PMTCT) of HIV programme is now so
effective that few babies become HIV-positive; but those who do
frequently pose real problems. They are often born to young
mothers who have not disclosed their status and/or have poor
home circumstances. These mothers need intense counselling and
support, especially for the first few months, as there is a high
drop-out rate, especially if they have not yet disclosed their
status to their family. Mothers often have difficulty accepting
the positive status of their child, as they no longer expect it.
We serve a very mobile population who constantly transfer in
and out of the clinic, with or without informing the clinic.
Often clients are called away unexpectedly (e.g. to a funeral in
another province) and they do not think about, or do not have
time to come to the clinic for medication before departure. The
National Health Laboratory Service (NHLS) is sometimes a good
resource when trying to ascertain a client’s previous history,
as we can track where blood samples have been taken! I have
found this helpful when trying to find out more about an
abandoned child. This, however, illustrates the need for a
national database or a Medicalert-type card where clients could
voluntarily access their medication anywhere. They would also
then be recorded as compliant by collecting their medication.
The computer programme that we utilise (TIER.net) has a system
for following up defaulters, but in practice this is not well
implemented for various reasons. One reason is the delay in data
capturing. It would be helpful if each clinician had a desktop
computer, to allow data to be updated during the consultation. I
have kept my own computer records on my laptop, as well as an
appointment book for consultations, which has helped me to keep
track of my patients. I have found that I received a good
response from those mothers/carers whom I texted personally
quite soon after they defaulted (one week later) and I think
this was partly because they felt a sense of personal interest
from ‘their doctor’. Once they have defaulted for a long time,
they are often too embarrassed to return, but a text message,
even at this late stage, may give them a reason to return to the
clinic without losing face. It certainly does not help to get
angry with defaulters as there is usually a very valid reason
for defaulting, such as problems in the family, and these need
to be dealt with as part of the greater model of care.
Seeing the same clinician at each visit has many
advantages. If possible, this is a much better
system as it leads to good clinician/patient/family
interaction and usually results in better adherence. It can be
organised to an extent by making appointments on certain days
for specific clinicians.
The neurological side-effects of HIV are considerable. Children
with major impairment are appropriately referred to special
schools, but those with minor impairment (and this is a large
proportion of children receiving ART) remain in mainstream
education with little, if any, assistance. There seems to be
very little in place to help the children with minor impairment
and this will need to be addressed urgently by educational
authorities.
This would be of considerable value for stable children. Maybe,
one for pre-schoolers, one for primary school and one for high
school/teenagers. Occasionally, it would be helpful to have
carers and children together, and sometimes to have them
separate. In this way, issues such as progressive disclosure
could be dealt with in an age-appropriate manner, together with
other issues that affect the specific age groups. Teenagers are
a particular challenge. They need lots of support and
interaction to prevent them from defaulting, as well as lots of
input about sexuality and their responsibilities in this regard.
Teens at school find it difficult to miss school to come to the
clinic. A possible solution would be to evaluate the stable ones
clinically only four times a year (in the school holidays) with
their carer collecting their medication in between.
I have found it very helpful to treat both mother and child in the same consultation, essentially offering a one-stop-shop. This way, the mother’s time in the clinic is minimised and the clinician gets to know the family circumstances. This is an essential part of treating patients as their social circumstances have a considerable impact on how they perform on treatment. In one particular case, I treat both parents and their child.
It has been interesting and stimulating to be in the field of
HIV medication, particularly with regard to treatment in
children. The management has come a long way, but it is an
evolving field and there is a long way to go yet.
S Afr J HIV Med 2014;15(1):22-23. DOI:10.7196/SAJHIVMED.1020