Download Paediatric HIV Lit Review - Factors Affecting ART Uptake

Summary of New Findings
Literature Review Prepared by Johns Hopkins Center for Communication
Programs – Baltimore, 2010
Background
In this review we will firstly present a summary of the WHO and UNICEF guidelines and
recommendations with regard to pediatric HIV treatment and diagnosis, and then we will
present the national Ugandan guidelines and objectives related to pediatric HIV. We will also
show relevant finding on uptake of HIV treatment and services from national Ugandan surveys.
Finally we will discuss the barriers and facilitators of uptake of HIV treatment and services in
Uganda.
WHO guidelines for Pediatric HIV diagnosis and treatment
In 2010, the WHO published its recommendations for the diagnosis and treatment of infants
and children with HIV (10). Those recommendations were based on a public health approach
to HIV considering the most efficient and cost effective way to tackle pediatric HIV. To
establish diagnosis in infants and children WHO strongly recommends that(10):
1. Diagnostic HIV serological assays have a minimum sensitivity of 99% and specificity of
98%, and that the tests be performed by a quality-assured, standardized and validated
laboratory.
2. Diagnostic HIV virological assays (usually at or after 6 weeks of age) have a sensitivity
of at least 95% (ideally greater than 98%), and specificity of 98% or more, and that the
tests are performed by a quality-assured, standardized and validated laboratory.
3. HIV virological testing be used to diagnose HIV infection in infants and children less
than 18 months of age.
4. HIV DNA be used on whole blood specimen or dried blood spots (DBS) HIV RNA on
plasma or DBS ultrasensitive p24 antigen (Up24 Ag) on plasma or DBS in infants and
children undergoing virological testing
5. All HIV-exposed infants have HIV virological testing at 4 to 6 weeks of age or at the
earliest opportunity thereafter.
6. In infants with an initial positive virological test result, it is strongly recommended that
ART be started without delay and, at the same time, a second specimen be collected to
1
verify the initial positive virological test result. Do not delay ART, while waiting for the
results of the verification of the first positive virological result test.
7. Test results from virological testing in infants be returned to the clinic and
child/mother/carer as soon as possible, to enable prompt initiation of ART.
8. All infants with unknown or uncertain HIV exposure have their HIV exposure status
ascertained.
9. Well, HIV-exposed infants undergo HIV serological testing at around 9 months of age
(or at the time of the last immunization visit). Those who have reactive serological
assays at 9 months should have a virological test to identify infected infants who need
ART.
10. Infants with signs or symptoms suggestive of HIV infection undergo HIV serological
testing and, if positive (reactive), virological testing.
11. Children aged 18 months or older, with suspected HIV infection or HIV exposure, have
HIV serological testing performed according to the standard diagnostic HIV serological
testing algorithm used in adults.
12. In sick infants in whom HIV infection is suspected, and virological testing is not
available, HIV serological testing and use of the clinical algorithm for presumptive
clinical diagnosis of HIV infection is strongly recommended.
In addition to the above recommendations for pediatric HIV diagnosis, the WHO 2010 report
also includes the latest recommendations on:

When to start antiretroviral therapy in infants and children

What to start − recommended first-line ART regimens for infants and children

Clinical and laboratory monitoring

First-line regimen treatment failure; when to switch regimens

Choice of second-line regimens in the event of treatment failure

Considerations for infants and children with tuberculosis and HIV

Considerations for the nutrition for HIV-infected infants and children

Adherence to ART
2
The detailed recommendations on each of the above can be found in the WHO report
(reference 10). It available for free download from the link:
http://www.who.int/hiv/pub/paediatric/paed-prelim-summary.pdf
WHO guidelines on PMTCT include (2009): (3)





Antiretroviral therapy for all HIV-positive pregnant women with a CD4 count
below 350 or WHO stage 3 or 4 HIV disease, with treatment to begin without
delay
Longer provision of antiretroviral prophylaxis for HIV-positive pregnant women
who are not in need of ART for their own health
Where mothers are receiving ART for their own health, infants should receive
prophylaxis with nevirapine for six weeks after birth if the mother is
breastfeeding, and prophylaxis with either nevirapine or AZT for 6 weeks if the
mother is not breastfeeding
Giving antiretroviral therapy to the mother or child throughout the breastfeeding
period, with the recommendation that breastfeeding and prophylaxis should
continue until 12 months of age if the infant is either HIV-negative or of unknown
status.
Where mother and infant are both HIV-positive, breastfeeding should be
encouraged for at least the first two years of life
UNICEF priorities for preventing HIV among mothers and children (3)
1. Accelerate the scale-up of PMTCT services and early infant diagnosis to contribute to
the elimination of HIV transmission to young children.
2. Support and empower adolescents, particularly girls, to identify and respond to
their own vulnerabilities.
3. Protect the rights of adolescents and young people living with HIV to receive
good quality support and services.
4. Ensure that adolescents who are in situations of the greatest risk are reached by
HIV prevention, treatment, care and support services.
5. Scale-up child-sensitive social protection, a necessary part of the response for
children affected by AIDS.
6. Strengthen the community capacity to respond to the needs of children affected
by AIDS by preventing the separation of families and improving the quality of
alternative care.
7. Strengthen whole systems so that gains made on behalf of women and children
affected by AIDS can be extended and sustained
8. Improve data gathering and analysis to achieve results for children, and identify
gaps in equitable coverage of and access
3
In 2006, the national PMTCT policy guidelines with respect to infant feeding for HIV
positive mothers in Uganda include:

Mothers living with HIV and their partners will be counseled on infant feeding,
within the context of HIV infection to enable them make an informed and
appropriate choice. Adequate support will be given to them to facilitate practice of
the chosen method.

A mother should opt for replacement feeding if it is Affordable, Feasible,
Acceptable, Sustainable, and Safe

A mother living with HIV will continue to breastfeed the infant who tests HIV
positive for as long as possible
In Uganda, the Campaign to End Pediatric HIV and AIDS (CEPA) developed four
objectives to build the Uganda National Advocacy Action Plan (NAAP): (4)
1. Family-Centered Care and Nutrition. Expand access to PMTCT+ and pediatric
treatment, care, and support, including nutrition services, and integrate child and
family services with other health services in order to improve survival rates and
health outcomes for children, HIV-positive mothers, and their families.
2. Early Infant Diagnosis and Treatment. Expand access to early infant diagnosis
and earlier and improved pediatric treatment in order to improve survival rates
and health outcomes for children.
The 2008 global WHO guidelines on care for infants born to HIV positive mothers
provide for;
 HIV antibody testing at birth, and again at 6, 12 and 18 months of age,
 HIV/PCR at 4 weeks and again at 4 months
 ART (TMP+SMX) from 4 weeks until there is confirmation of HIV
negative status
 Vitamin A 100,000 IU at 9 months, 200,000 IU every 6 months until the
age of 5 years
3. Access to Appropriate Medications. Reduce distribution barriers and increase the
global supply of high-quality, low-cost lifesaving medicines for children and their
families, including ARVs, drugs to treat opportunistic infections, and first and
second-line regimens to ease dosing and administration.
4. Full Funding to Eliminate Pediatric AIDS. Secure the financial resources needed
to facilitate country-level scale-up of PMTCT+ and pediatric and maternal
treatment programs.
4
Adherence to ARTs:
Adherence rates exceeding 90% are desirable in order to maximize benefit. Adherence in the
first days and weeks is critical for long-term success. Non-adherence in the first few weeks
may lead to the development of the premature development of drug-resistant virus. (1)
Uptake of HIV services in Uganda
The 2007 National Pediatric HIV/AIDS Survey found great disparities in access to HIV services
among children in Uganda. Specifically, the findings showed that (5)
 There is disparity of distribution of services between rural (9.8%) and urban
areas (90.2%).
 Overall the proportion of Children under ART is low (only 8.3%)
 The Eastern region appears to have high numbers of children enrolled – probably
because good record keeping. Low access in the Mid-Northern data set could be
due to poor record keeping or real difficulties in acces
 Research centers are seen to cater for more children under ART (19%) while
lower level units fair poorly in ART catering for children.
According to the 2006 UDHS (2) only 18 percent of women who gave birth in the two years
before the survey were counseled, tested for HIV, and received their test results.
In response to these findings, the 2007 National Pediatric HIV/AIDS Survey
recommends strengthening the Pediatric HIV services at the lower level Health Units,
rural areas and Mid-Northern region which had the smallest numbers of children under
care and on ART. This can be done by training more Health workers, sensitization of
the public and increasing PMTCT services which are a good entry point
To improve access to ARTs, Uganda is currently scaling-up all basic HIV care
programs. Partner support for scaling-up paediatric care has increased (PEPFAR,
UNICEF, EGPAF, Clinton Foundation). In addition, Over 2000 health workers have
been trained in comprehensive HIV/AIDS care including ART management. (9)
5
Barriers to ART adherence and HIV service uptake
Drug related barriers and facilitators to adherence in children include: (1)
1. Lack of pediatric formulations (1) (7) Because of the lack of appropriate pediatric
formulations for certain drugs, caregivers of pediatric HIV patients may break or crush
tablets meant for an adult patient in an attempt to produce child-size doses. With tablets
that are asymmetric or not scored, this may lead to administration of erratic and
inappropriate doses.(12)
2. Poor palatability, especially with liquid formulations Bad-tasting drugs are a wellrecognized factor in treatment failures in children and lead practitioners to try many
approaches to improve palatability of ARV drugs for children (12). Sometimes clinicians
resort to insertion of gastrostomy tubes for medication administration (12)
3. High pill burden or liquid volume Many drugs are now being coformulated into tablets
that contain 2 or 3 different ARV agents. These fixed-dose combinations (FDCs)26–28
are easier to prescribe and dispense, which minimizes errors. A lower pill burden may
enhance patient adherence to therapy. Developing FDCs that are appropriately
formulated for children should be a high priority for pharmaceutical companies. (12)
4. Frequent dosing requirements: Simplified dosing guides have been developed by the
WHO and are readily available to clinicians who care for children and adolescents with
HIV infection in resource-limited settings (see www.who.int/hiv/paediatric/en/index.html).
These guides will increase the accuracy of dosing and dispensing ARV medications to
these patients. (12) (13)
5. Dietary restrictions: Unlike antiretroviral agents developed earlier in the HIV epidemic,
many antiretroviral medications that have been approved in recent years have
sufficiently long half-lives to allow for once-daily dosing, and most also do not have
dietary restrictions (14)
6. Side-effects such as metabolic complications and lipodystrophy can adversely affect
adherence (13)
7. As the child health improves, the impetus to continue therapy decreases.
Individual level barriers and facilitators to adherence include:
1. Knowledge that antiretroviral drugs can reduce the risk of MTCT. (2)
6
2. Knowledge that ARVs taken during pregnancy can reduce the risk of HIV transmission.
According to the 2004-05 UHSBS (2) Knowledge of ARVs is fairly low in North Central
(29 percent of women and 35 percent of men), one of the regions with the highest HIVprevalence in the country.
3. Peer support groups are particularly beneficial for mothers with young children (1)
4. Knowledge about the availability of preventative services: the 2004-05 UHSBS showed
that 77 percent of men and about half of women know of at least one source for male
condoms. Young people in urban areas are much more likely to know a source for
condoms than those in rural areas.
Health provider level barriers and facilitators to treatment adherence and service uptake
include:
1. Commitment and involvement of a caregiver: this may be difficult if the family is
disrupted due to health or financial conditions (1)
2. Knowledge and skills of the provider: Inadequate knowledge and technical skills of
service providers in management of HIV/AIDS in children was found to contribute to the
disparity in accessing HIV medications between children and adults. (7) The great
majority of the health workers had not had any training in an HIV/AIDS management
area. Over 300 staffs have to be trained in each of the key HIV/AIDS care and treatment
services. The training needs were uniformly distributed across all regions. (6)
3. Knowledge and skills of providers in psychosocial support: HWs reported barriers to
Provision of psychosocial support were: (5)



Lack of Pediatric Counseling skills especially disclosure to children.
Counseling space is not adequate, thus compromising on confidentiality and
privacy. For instance, in Tororo Hospital, they counsel people under trees. In
JCRC Fortportal, sometimes two people are counseled by one counselor in
the same room because of lack of space. Generally counselors have a heavy
workload.
In some centers, Counselors are volunteers and they need motivation
4. Communication abilities of the care givers: cultural and language barriers are barriers
for good communication between providers and patients. Training of providers and
patients in this regard is recommended (13).
5. Having a secondary (back up) informed caregiver (1)
7
6. Understanding of how the developmental stage of the child influences cooperation with
treatment: this helps in planning and support for the process (1)
7. Beginning support early, before the initiation of treatment (1)
8. Developing an adherence plan (1)
9. Offering education to the child and the caregivers (1)
a. Initial education should include:
i. Basic information about HIV and its natural history
ii. The benefits and side effects of the medications
iii. How the medications should be taken
iv. The importance of not missing any doses
v.
If the medication is taken with food, the consumption of all food is
necessary to ensure the intake of the full dose
vi. For younger children it is also important to: practice tasting the medicine,
practice measuring the liquids, and train the child in pill swallowing
10. Adherence is facilitated by providers who: (1)
a. Use practical aids: e.g. calendars, blister packs, labeled syringes or other
facilitating presentations of drugs.
b. Use Fixed Dose Combinations (FDCs)
c. Fit the ARTs into the child’s and/or the caregivers lifestyles
d. If possible, match the drug regimen for children to the drug regimen of the adults
in the same family
e. Are prepared for non-severe side effects.
11. Adherence is facilitated by providers who know how to measure adherence. Methods to
measure adherence include: (1)
a. Quantitative methods: asking children or caregivers how many doses have been
missed in the past3, 7, or 30 days. But this may be problematic as children or
caregivers may learn of the social desirability of reporting complete adherence.
8
b. Qualitative methods: can be more effective in identifying barriers to adherence
but can also be more time consuming.
c. Review of pharmacy records
d. Pill counts
e. Viral load measurements can be used to assess adherence but is expensive in
low resource settings.
12. Providing ongoing support for adherence (1). Adherence should be evaluated at each
visit and any identified barriers should be addressed (11)
13. Using Directly Observed Therapy (DOT) (1)
14. Availability of child counselors: All Units are deficient of Child counselors
although most of them counsel children (5)
Health facility level barriers and facilitators to treatment adherence and service
uptake include:
1. An uninterrupted supply of the ARTs in the facilities and the house is essential. This can
be ensured by developing a well-functioning system for forecasting, procurement and
supply management (1)
2. Lack of appropriate referral: although 29% of the facilities reported providing community
based HIV/AIDS services through Home Based Care or Community Based HIV
Counselling and Testing, only 17% had a formal functional referral mechanism in place
and only 11% had links with other organizations for ancillary services. (6)
In order to improve early diagnosis and treatment of children, linking of children from
PMTCT to care has to be strengthened. This calls for more recruitment and training of
Staff (5). In 2007, the National Pediatric HIV/AIDS Care Survey on linkage with PMTCT
and HIV services (5) found that:


Only 17 (58.6%) reported linking of HIV exposed children with HIV care
services.
Only 55% of government and 85.7% of PNFP reported linking exposed
children to care.
3. The availability of youth-friendly services (YES) (2): Youth-friendly services are
characterized by:
9
a. Staff who are sensitive to youth culture, ethnic cultures, gender, sexual
orientation, and HIV status
b. Flexible hours, convenient locations, and walk in appointments
In 2007, the Uganda Service Provision Assessment (USPA) found that: (2)

Only 5 percent of facilities offer youth-friendly HIV testing services. However, among
facilities with an HIV testing system, 22 percent offer youth-friendly HIV testing services.

Youth-friendly HIV testing services are most common in hospitals and HC-IVs and in
facilities in Kampala. Of the facilities with any YFS, 77 percent have at least one
provider trained to provide youth-friendly services.

Far fewer (13 percent) facilities have appropriate guidelines on site.
4. Inadequate and inappropriate health infra-structure: has been noted by Baylor
International (7) as a contributing factor to the disparities in ART provision
between children and adults with children receiving significantly less service.
5. External partnerships: In Uganda, the HC IV and III which were able to provide
good services were depending on external support from partners. Therefore,
partnerships with different organizations should be encouraged in order to
improve services. PMTCT program needs to extend to the PFP Health Units
(5)page 31 of the 2007 National pediatric HIV/AIDS Case Survey.
6. Lack of appropriate infrastructure and equipment: Infrastructure and equipment:
The majority of the facilities had consultation rooms (60%) with visual and
auditory privacy but in most cases, the counseling rooms shared the same space
with other services. Over half of the facilities had separate rooms for HIV patients
or run the other services on different days from the HIV clinic days. However,
55% did not have adequate space to accommodate examination tables and other
patient furniture. The recommended clinical equipment was available in less than
15% of the facilities including the following; tape measure, weighing scale, height
measuring instruments, Blood Pressure machine suitable for children,
thermometer, dispensing equipment, or a light source (a torch). Thirty six percent
had an accessible hand washing facility in the HIV clinic. (6)
7. Having clinical guidelines in the facility: (6)The following clinical care guidelines
were lacking in more than 50% of the health facilities; WHO clinical staging,
PMTCT, cotrimoxazole management, ART care and Opportunistic Infection
management. Relevant patient education materials were available in only 24% of
the facilities, especially so in the eastern and south-western regions.
10
8. Availability of Laboratory services: All the assessed health facilities were
providing some laboratory services, including the rapid HIV test, TB sputum,
malaria screening, HB, urinalysis etc. however, the majority (93.9%) were not
providing all the necessary laboratory monitoring tests for HIV care. Although
Routine Counseling and Testing (RCT) in the wards is key to identification of
children infected with HIV/AIDS, only 7 facilities were providing it at the time of
the assessment. Similarly, although the staffs knew about the Ministry of Health
system for processing DNA-PCR tests, only a few were actually implementing it.
The facilities lacked CD4 count services, total blood count/CBC machine, viral
load count and chemistry machines. About 50% did not have basic laboratory
equipment like microscopes, centrifuge and refrigerators and the overwhelming
majority of the labs were grossly understaffed and lacked laboratory data capture
tools for the services provided. Accessibility to HIV laboratory test and monitoring
services is further limited by lack of essential utilities like hydro-electric power
source as was the case at Kihihi Health Centre IV. For laboratory services not
readily available at the facility, there were no reliable patient referral
mechanisms; patients were just referred and they never got feedback. (6)
9. Information, Education and Communication (IEC) for clients: The majority of the
IEC materials were either on adult HIV care or in inappropriate languages for the
local communities.(6)
10. Rights of clients: (6) Over 75% of the facilities had no support groups; post test
clubs, youth clubs, caregiver clubs etc. and 76% stated that they did not provided
a convenient services to clients. Only 12% displayed their sign posts to show the
range of services and hours of operation and only 6% had a mechanism in place
to regularly get clients views on the quality of its services.
11. Community linkage: (6)There was poor linkage between the facilities and the
existing community based care groups with only 30% of the facilities reporting
some formal linkages with PHA groups for psycho-social support and group
counseling activities either at clinic or community level. Indeed over 75% of the
facilities did not involve PHAs & Community Volunteers in the mobilization &
delivery of community based services like Home Based Care (HBC). Only 4
health facilities had a community based services programme like HBC or Home
Based HIV Counseling and testing Service and only four had trained community
based agents to provide integrated home based management of paediatric HIV
care and treatment services. Only 2 facilities Kalongo Hospital and Bukinda had
mapped the HIV/AIDS needs as well as socio-economic needs of CLHIV for
purposes of referral or linkages. The roles and responsibilities of community
support groups were defined in Kagadi Hospital only.
12. Availability of data capture tools: It was noted that the majority of the facilities had
the right tools but were not filling them in properly. Facilities in eastern Uganda
11
have comprehensive data capture tools while in the North, North eastern,
Western and south western regions tools are available but the capture of
pediatrics variables is not done well. The commonest weaknesses as noted by
the assessment teams included; stock-outs of data collection tools like the ART
card, MOH Pre-ART and ART registers; duplications in the patients’ registration
numbers due to poor sequencing/numbering in the registers; and some register
were too old possibly due to poor handling with some pages missing. WHO
staging was particularly noted to be irregularly filled and where done it would be
with inconsistencies. (6)
Quality of pediatric HIV services:
The 2007 National Pediatric HIV/AIDS Survey (5) used the Ten-Point-Package as the standard
against which to examine the quality of HIV services care in Uganda. The 10 points and the
findings were as follows:
1. Early confirmation of HIV: early diagnosis facilitates timely access to treatment and
social and emotional support. In Uganda;
a. Although HIV testing is widely available, some Health Units fail to make early
diagnosis because they run out of the test kits
b. Most of the DNA/PCR is not done on site, leading to delays in getting the results.
c. Poor linkages to care from PMTCT are a hindrance to early diagnosis. Even
where linkages exist, there is high loss to follow up due to lack of male
involvement and stigma.
d. Other problems with PMTCT reported included staff shortages, lack of training,
lack of guidelines and stock out of test kits and drugs for prophylaxis
2. Monitoring of child growth and development:
a. Research Centres were the best in monitoring and monitoring went down with
the lower levels. By type of facility,
b. PFP Units were not doing well in growth monitoring. Most of them use weights
only.
c. Developmental Assessment was mainly done in research centers.
d. Low use of growth charts for growth monitoring in facilities (Less than 40%)
12
e. Low level of food demonstrations while educating clients – apart from research
sites.
3. Immunization according to recommended national schedule:
a. Generally all levels and levels of Health Units were deficient of immunization in
the clinic but PFP was the worst.
b. Having a section on immunization in the Clinical notes is a good reminder for the
HWs to identify those who need it. However, this was found in only 8 (22.2%) of
the Health Units.
4. Provision of prophylaxis for opportunistic infections
a. All the Health Units reported giving Cotrimoxazole prophylaxis to HIV exposed
and infected children. However, some reported that they give it to only confirmed
HIV infected children.
b. INH prophylaxis was lacking at all levels and types. Only 5 units reported
identifying children who needed INH prophylaxis while only 3 give it. These
included Kawempe Health Centre PIDC satellite, Bwizibwera HC IV and
Kangulumira HC IV
5. Actively looking for and treating infections early
a. All the Health Units treat opportunistic infections. However, health workers
complained about irregular supply and limited spectrum of drugs. They also lack
Pediatric formulations.
6. Counseling the mother/care taker and family on optimal infant feeding, personal
and food hygiene, and when child should be followed up according to the WHO
recommendations
a. Counseling on infant feeding reduced with the level of Health Unit
b. Of the 27 Health Units which counsel about feeding, only 18 reported that
the person who teaches them is trained in infant feeding or nutritional
counseling. Only 9 of them conduct food demonstrations while educating
clients.
c. Feeding assessment took place in 20 out of the 36 Health Units involved
in the survey.
d. Other problems encountered include few trained staff in infant feeding/
nutrition and lack of logistics for follow up
.
7. Conducting disease staging for the infected child:
13
a. Most of the Health Units in the survey stage children’s HIV disease. Only 3
Government HC IIIs do not stage
b. Regular staging was less in the HCIII and HCIV Units.
c. Twenty seven (75%) of survey Health Units stage regularly, while 5 stage
only at the first visit
8. Offering ARV treatment for the infected child (when needed)
a. On average it is observed that over 50% of the facilities (including HC II)
possess Nevirapine – probably in relationship to PMTCT program.
b. Over 60% of the research, regional and district sites have both the syrup
and tablets. This picture is similar
c. With Zidovudine, is noted to be significantly less available in regional sites
with the syrup at regional sites (50%), and HC III for both syrup and
tablets only in 16.7% of the facilities.
d. Stavudine syrup is readily available in the higher level facilities. The lower
level health facilities
e. There is less stocks of alternate combinations – Kaletra (less that 50%),
tenofivir, and didanosine paediatric preparations.
f. These trends are mirrored by ownership – with the ARV supplies being
more prominent among the PNFP compared to both government facilities
and PFP.
9. Provision of psychosocial support to the infected child and mother
a. Only 27 (75%) Health Units counsel children
b. Only 69% had counseling guidelines and 21 (58%) had counseling notes.
Based on the above findings from the Ten-point package of quality of care, The 2007 National
Pediatric HIV/AIDS survey recommends the following:




The quality of services generally reduced with the level of Health Unit. There is a
need for training Health workers about the standards of HIV Care among children
in order to improve the quality of services.
Dapsone should be made available in all Health Units for children who are
sensitive to Cotrimoxazole.
Immunization services need to be available in the Paediatric Clinic on all clinic
days. A section on immunization in the clinical notes for children under 5 years
would help pick up all those who need it.
Ministry of Health should ensure regular flow of test kits and drugs in order to
avoid stock outs especially of ART.
14

Advocacy for Pediatric Formulations and variety of drugs for OI treatment is
needed
Facts for life (2010) developed 10 key messages that every family and community has the right
to know about HIV. These 10 messages are: (8)
Message 1: HIV (human immunodeficiency virus) is the virus that causes AIDS
(acquired immunodeficiency syndrome). It is preventable and treatable, but incurable.
People can become infected with HIV through (1) unprotected sexual contact with an
HIV-infected person (sex without the use of a male or female condom); (2) transmission
from an HIV-infected mother to her child during pregnancy, childbirth or breastfeeding;
and (3) blood from HIV-contaminated syringes, needles or other sharp instruments and
transfusion with HIV-contaminated blood. It is not transmitted by casual contact or other
means.
Message 2: Anyone who wants to know how to prevent HIV or thinks he or she has HIV
should contact a health-care provider or an AIDS centre to obtain information on HIV
prevention and/or advice on where to receive HIV testing, counseling, care and support.
Message 3: All pregnant women should talk to their health-care providers about HIV. All
pregnant women who think they, their partners or family members are infected with HIV,
have been exposed to HIV or live in a setting with a generalized HIV epidemic should
get an HIV test and counseling to learn how to protect or care for themselves and their
children, partners and family members
A pregnant woman infected with HIV needs to know that:
 starting HIV-exposed newborns on cotrimoxazole or Bactrim between 4 and 6
weeks of age and continuing it until HIV infection can be definitively ruled out can
help prevent ‘opportunistic’ infections (infections that take advantage of a
weakened immune system)
 there are various infant feeding practices, each with advantages and risks
Message 4: All children born to HIV-positive mothers or to parents with symptoms, signs
or conditions associated with HIV infection should be tested for HIV. If found to be HIVpositive, they should be referred for follow-up care and treatment and given loving care
and support.
To achieve this it is important to know that:


The earlier a child is tested, diagnosed with HIV and started on HIV treatment,
the better the chance of his or her survival and living a longer and healthier life.
The health-care provider should recommend HIV testing and counseling as part
of standard care to all children, adolescents and adults who exhibit signs,
15







symptoms or medical conditions that could indicate HIV infection or who have
been exposed to HIV. HIV testing and counseling should be recommended for all
children seen in health services in settings where there is a generalized HIV
epidemic.
A child whose mother is known to be HIV-positive should be tested for HIV within
six weeks of birth or as soon as possible. Infants have their mother’s antibodies
for several weeks after birth, and therefore standard antibody tests are not
accurate for them. A special polymerase chain reaction (PCR) test is required to
tell if an infant has the virus around 6 weeks of age. If positive, the child needs to
begin treatment immediately. The health-care provider can help the family set up
a feasible and appropriate antiretroviral therapy regimen for the child. The
parents should receive counseling and social services.
An important part of HIV care and antiretroviral treatment (ART) for children is
the antibiotic cotrimoxazole. It helps prevent ‘opportunistic’ infections related
to HIV, especially PCP (pneumocystis pneumonia). This treatment is called
cotrimoxazole preventive therapy, or CPT.
Children with HIV should be given ART in fixed-dose combinations. These can
be prescribed by a trained health worker, who can also provide follow-up support.
If the child is going to school, the school can also provide support to make sure
that the child takes the medicines while at school.
It is critical to encourage children taking ART to keep taking the medicines on the
recommended schedule. This will help ensure the treatment remains effective.
Children need a healthy, balanced diet under any circumstances, but when they
receive HIV treatment, ensuring proper nutrition is especially important
HIV or opportunistic infections may cause reduced food intake due to decreased
appetite, difficulty swallowing or poor absorption. Therefore, extra attention
should be given to the nutrition of children who are HIV-positive to make sure
they receive high-quality, easily digestible foods. Without proper nutrition, their
growth and development can be hindered. This could lead to more opportunistic
infections that further deplete children’s energy and increase their nutritional
needs.
Once children who are HIV-positive are old enough to understand, they need to
be involved in decisions about their medical care and support. They also should
be made aware of the importance of prompt care and treatment of infections.
This is a critical part of developing their ability to make healthy decisions in the
future.
16
Message 5: Parents or other caregivers should talk with their daughters and sons about
relationships, sex and their vulnerability to HIV infection. Girls and young women are especially
vulnerable to HIV infection. Girls and boys need to learn how to avoid, reject or defend
themselves against sexual harassment, violence and peer pressure. They need to understand
the importance of equality and respect in relationships.
Message 6: Parents, teachers, peer leaders and other role models should provide adolescents
with a safe environment and a range of life skills that can help them make healthy choices and
practice healthy behavior.
Message 7: Children and adolescents should actively participate in making and implementing
decisions on HIV prevention, care and support that affect them, their families and their
communities.
Message 8:Families affected by HIV may need income support and social welfare services to
help them take care of sick family members and children. Families should be guided and
assisted in accessing these services.
Message 9: No child or adult living with or affected by HIV should ever be stigmatized or
discriminated against. Parents, teachers and leaders have a key role to play in HIV education
and prevention and in reducing fear, stigma and discrimination.
Message 10: All people living with HIV should know their rights.
Current interventions for pediatric HIV care in Uganda include: (9)
1. Capacity-building
 Adaptation of training materials for IMCI HIV course
 More training planned in paed. HIV care and counselling (MoH, PIDC)
 Regional paediatric mentors/supervisors have been trained (support from
EGPAF and Regional centre for Quality of Care)
2. Early Infant diagnosis
 HIV counselling policy has been revised to address paediatric counselling
challenges
 A countrywide program for DNA PCR currently is being rolled out
3. Access to early HIV care
17
 Septrin for prophylaxis is recommended for all children born to HIV positive
mothers and other HIV positive children
 Strengthening of linkages between HIV care clinics and PMTCT services
(EGPAF support
Current challenges for pediatric HIV in Uganda include: (9)
 Human resource and capacity-building constraints
 Few health workers trained to handle paediatric HIV care
 Few paediatric counsellors
 Low public knowledge on availability of services for children
 Adherence issues
 Coverage for early Infant HIV diagnosis is still low
 Lack of appropriate replacement feeding for HIV exposed infants (80% of mothers opt to
breastfeed, 20% replacement feeding)
 Linkage of infants and families identified under PMTCT to comprehensive HIV care is
still limited
 Child/adolescent friendly services limited to centres of excellence (Mildmay, PIDC)
 Inadequate family/community support and follow-up for HIV positive children and their
families
Current areas that require focus in pediatric HIV care in Uganda include: (9)
 Scale-up capacity-building efforts for paediatric HIV care and ART (IMCI HIV course,
PIDC-Baylor training)
 Facilitate access to HIV care
 Strengthen linkages between PMTCT and HIV care clinics
 Scale-up Early infant HIV diagnosis and care (DNA-PCR)
 Avail convenient paediatric formulations - tablets, syrups
 Improve paediatric HIV care services (child/adolescent friendly)
18
 Community mobilization and sensitization
 Use of more effective regimens for PMTCT
 Use of family-centred approach to HIV care, strengthen family and community support
for children
 Strengthen family planning services for HIV positive women
References
1. Antiretroviral therapy of HIV infection in infants and children in resource-limited
settings: towards universal access. Recommendations for a public health approach.
WHO 2006.
2. Uganda Service Provision Assessment Survey (2007). Key findings on HIV/AIDS
and STIs.
3. HATiP. HIV & AIDS Treatment in Practice (2009). New WHO treatment
guidelines.150.
4. Uganda National Advocacy Action Plan. Campaign to End Paediatric HIV and AIDS.
5. Tagoola A and Nabukeera N (2007). National Pediatric HIV/AIDS care survey.
6. Baylor-Uganda National Expansion Program (2008). A needs assessment Report for
32 health facilities assessed for readiness to start integration of pediatric and family
HIV/AIDS in routine services Children’s Foundation
7. Baylor International Pediatric AIDS Initiative Last Updated: June 10, 2010.
http://bayloraids.org/uganda/hiv.php
8. Facts for Life. 4th edition (2010).
9. Elizabeth N. key national issues on pediatric HIV and ART. STD/AIDS Control
Program, MoH.
10. Antiretroviral therapy for HIV infection in infants and children: towards universal
access (2010). Executive summary of recommendations. Preliminary version for
program planning.
11. Schuval SJ. Pharmacotherapy of pediatric and adolescent HIV infection.
Therapeutics and Clinical Management (2009) 5: 469-484.
19
12. Committee on pediatric AIDS, section on international child health. Increasing
antiretroviral drug access for children with HIV infection. American Academy of
Pediatrics (2007) 838-845.
13. Shah C. Adherence to high activity Antiretroviral Thearapy (HAART) in pediatric
patients infected with HIV: issues and interventions. Indian Journal of Pediatrics
(2007); 74(1): 55-60
14. Panel on clinical practices for treatment of HIV infection. Guidelines for the use of
antiretroviral agents in HIV-1 infected adults and adolescents. Department of Health
and Human Services (DHHS), December 1, 2009. Available from URL:
http://AIDSinfo.nih.gov. Accessed on August 25, 2010.
20
List of Acronyms
AIDS
Acquired Immune Deficiency Syndrome
ART
Anti Retroviral Therapy
CEPA
Campaign to End Pediatric HIV and AIDS
CPT
Cotrimoxazole Preventive Therapy
DOT
Directly Observed Therapy
DBS
Dried Blood Spots
EGPAF
Elizabeth Glaser Pediatric AIDS Foundation
FDCs
Fixed Dose Combinations
HBC
Home Based Care
IEC
Information Education and Communication
HIV
Human Immunodeficiency Virus
PCR
Polymerase Chain Reaction
PEPFAR
The President's Emergency Plan For AIDS
PMTCT
Prevention of Mother to Child Transmission
PCP
Pneumocystis Pneumonia
RCT
Routine Counseling and Testing
UDHS
Uganda Demographic and Health Survey
UHSBS
Uganda HIV/AIDS Sero-Behavioral Survey
UNMICEF
United Nations Children’s Fund
USPA
Uganda Service Provision Assessment
WHO
World Health Organization
YES
Youth-friendly services
21