A Literature Review on Pediatric
Communication Gaps
Hanna Shoaamare
1
Introduction
Pediatric HIV/AIDS is a challenging field involved with the testing, care, and
treatment of children and youth. Although it was once a field feared by many health care
providers, breakthrough development and research has led the field of pediatric
HIV/AIDS into a new direction full of promising and favorable outcomes. For instance,
pediatric ART has improved in its access and services making care and treatment more
feasible. Medication has become more palatable and the implementation of PMTCT has
significantly reduced transmission of the virus. Nevertheless, cultural barriers and
misconceptions of the disease in developing countries, such as Ethiopia, have made the
battle strenuous and difficult. One such issue is concerned with the communication flaws
in pediatric ART.
Currently, there are 134,586 children under 14 years living with HIV/AIDS in
Ethiopia1. While it can be expected that more than half of these 67,000 require ART,
only 4,863, fewer than 7% were receiving ART as of March 2008. Without treatment,
75% of HIV infected children will die before their fifth birthday. Major obstacles to
scaling up pediatric care include: lack of human resources and scarcity of pediatric
providers, no systematic effort to identify and follow HIV exposed infants, limited
availability of virologic testing, lack of provider-initiated HIV testing, missed
opportunities for testing children, insufficient advocacy and understanding that ART is
efficacious in children, and limited experience with program implementation to provide
pediatric HIV/AIDS care and treatment.
Pediatric ART communication is a complex and intense topic. As is the case, the
AIDS Resource Center, in Addis Ababa, Ethiopia, has taken an initiative to have a clear
understanding of the communication gaps that influence the quality of pediatric ART
service delivery and uptake. Research on the communication gaps was done in close
collaboration with materials provided from the International Center for AIDS Care and
Treatment Programs (ICAP), the Ethiopian Pediatric Guideline from the Ministry of
Health (MOH), the TSEHAI program of Johns Hopkins University, the Guidelines for
Prevention of Mother to Child Transmission of HIV in Ethiopia by the Federal Ministry
of Health (FMOH), as well as interviews conducted with pediatricians affiliated with
ICAP and the Clinton Foundation. The information gathered has been divided under
several headings that capture essential points of the communication gaps in pediatric
ART. Please refer to the appendix attached for case studies reflecting the facts provided
behind each heading.
Disclosure
For service providers, disclosing HIV status to a patient or a caregiver can be a
very complex process; especially when the patient is a child. One of the greatest fears of
caregivers is that disclosure will unleash a terrible burden upon the child’s psychological
and emotional health2. Parents who transmitted HIV to their children may fear rejection
1
Federal HIV/AIDS Prevention and Control Office Federal Ministry of Health,
Guidelines for Pediatric HIV/AIDS Care and Treatment in Ethiopia (J
uly 2008)
2
from them, once they hear how their parents got infected. When the caregiver of the child
is a parent, guilt about transmission and its correlation with sexual taboos can be
problematic when disclosing3.
The topic of disclosure often causes an emotional outbreak that stimulates and
fuels disagreements within family members4. A mother who wants to disclose her and her
baby’s status to her own mother who also looks after the baby may be restricted by the
father. The mother then continues to give the child its medication only when the child is
under her care. To much dismay the grandmother does not enforce the treatment due to
ignorance of the child’s status. Therefore, “unless the family is prepared to disclose the
child’s HIV status to others, medication administration in these circumstances cannot be
assured.” 3
It is a common ordeal for one to have difficulty coping with an illness, but an
even greater ordeal when one has to care for a terminally ill person. Standard approaches
are initiated to cope with a loved one falling ill. Traditional silence around illness and
disease, limited communication within families, and denial as a coping strategy are some
of the essential mechanisms generally practiced with in Ethiopia3.
Stigma & Discrimination
Stigma and discrimination complicate the adherence process for children as much
as they do for adults. As a result of widespread stigma held against of people living with
HIV in Ethiopia, HIV positive children and their caretakers may hold fears of
abandonment, social rejection, and judgment2. These types of fears make disclosure seem
impossible not only to other family members but to health care providers as well.
Caregivers are nervous that the child might involuntary disclose their status to the general
public consequently exposing the family to stigma and discrimination. They fear that the
family’s status in society may become jeopardized by inevitably being ousted as HIV
positive2. As a result infected children do not get the chance to access and follow up on
care and treatment which puts them at higher risk of dying early from AIDS.
2
International Center for AIDS Care and Treatment Programs, Baseline Pediatric
Training Curriculum: Ethiopia (Trainers’ Manu
al)(2006)
3
International Center for AIDS Care and Treatment Programs, Pediatric Disclosure (2006)
4
International Center for AIDS Care and Treatment Programs, Columbia Clinical Manual Vol.1.0:
Pediatrics(English version)( 2005)
3
Hopelessness
The feelings of hopelessness and despair can be physically and emotionally
debilitating. HIV/AIDS is seen by many as a disease that cripples the body and leaves
one with no hope but death in the near future. The psychological impact of feeling
unworthy and guilty can be detrimental. The feeling of guilt that a mother faces upon
finding out her child is born with the virus is profound. Overwhelmed by the situation, a
devastated mother can retreat into denial and indifference which can put the child’s life in
danger5.
Adherence and Responsibility
Adherence is the key to effective treatment of HIV/AIDS. In the field of pediatric
HIV/AIDS adherence is a major obstacle for both children and their caregivers due to
various reasons: According to an interview conducted with Dr. Tsegaye Awano from
ICAP, women in reproductive ages and mothers are the common caregivers who usually
are bringing children to health services and are directly concerned with PMTCT. If
however, more than one caregiver is involved, both dispensation of ART and monitoring
of adherence becomes complicated; thus leading to missed ART doses6. A child with
several caregivers administering their ART may be taking their medication at different
times of the day depending on their caregiver. In a household with a large number of
occupants, the child’s medication time maybe at jeopardy since the caregiver may have a
tendency to forget while tending to other family members. In addition, a family member
or friend that looks after the child when the caregiver is not around may not be told about
the child’s status and the child may risk missing ART doses. The sex of the caregiver
may also determine the adherence of the child as female caregivers are known to be more
attentive to children, especially if the children are their own.
Some providers may tire of monitoring/supporting adherence if the child
repetitively shows inconsistency in taking their ART6. The service provider may feel that
their effort and hard work are constantly being disregarded and not being taken seriously.
From the child’s point of view, the child may tire of taking their medication as well6.
Especially in young children if the medication is not palatable. Lack of an adherence
buddy or a support group can also have a negative effect. An intense feeling of loneliness
and insecurity in the child can surface leading the child to depression and unwillingness 7.
5
International Center for AIDS Care and Treatment Programs, Pediatric Disclosure (2006)
6
International Center for AIDS Care and Treatment Programs, Columbia Clinical Manual Vol.1.0:
Pediatrics(English version)( 2005)
7
International Center for AIDS Care and Treatment Programs, Pediatric Adherence(2006)
4
During his interview Dr. Tsegaye mentioned several measures that could be taken
to minimize the risk of not adhering. E.g., to improve the quality of counseling and
explaining the meaning of HIV to positive children to support their mental health. Health
care providers need to further stress the importance of adherence to caretakers and
encourage positive mothers to engage in PMTCT. Practicing PMTCT will reduce the
incidence of HIV positive children being born while increasing the number of children
being tested will increase the number of HIV positive children in care and treatment.
Lack of Communication
Communication is an integral component of health care services to achieve
favorable outcomes. In pediatric ART, communication between the health care provider
and caretaker is essential for the child’s health and safety. According to Dr. Tsegaye
there are currently 7,000 children on treatment and 18,000 children who are not on
treatment but are in need of it. Although an effective and open dialogue between care
taker and health care provider is crucial they face various challenges in Ethiopia. Patients
and caretakers often want to please health service providers and may feel uncomfortable
admitting that they do not understand instructions8. They may have questions or mixed
feelings about antiretroviral treatment but hesitate to ask8. The child also may not be
taking his/her medication properly for various reasons but these are not discussed and
turns into a communication obstacle. According to traditional beliefs, health care
providers are considered to be masterminds whose authority should never be questioned
and orders be taken consistently. As a result, a child’s caregiver tends to be deeply
conflicted about sharing their concerns with service providers. The service provider can
also be overwhelmed with sharing pertinent information such as telling a child that he/she
has HIV because of the dual disclosure this requires; that his /her mother is also infected9.
Communication barriers between caretaker and child are issues that need to be
addressed as well. The lack of effective communication between caretaker and child can
be an impediment to successful adherence of ART. Caregivers have their own reasons to
withhold information from the child. Reasons such as: fear that the impact of disclosure
can be damaging to the child’s emotional health leading to the child going through
depression, the caregiver wants to protect the child from social rejection and stigma and
by telling the child his/her status, the child my disclose to others; the caretaker is
experiencing guilt about transmission and belief that the child will not understand, etc9.
The child, on the other hand, may want to ask and know what is wrong9. They may be
curious as to why they have to take their ART and some cases rebel against taking it.
8
International Center for AIDS Care and Treatment Programs, Columbia Clinical Manual Vol.1.0:
Pediatrics(English version)( 2005)
9
International Center for AIDS Care and Treatment Programs, Pediatric Disclosure (2006)
5
The child may feel isolated from sources of support and may end up finding out about
their illness inadvertently10. Maintaining an effective communication strategy for both
caretaker and child is the key to ART adherence.
PMTCT
Offering HIV testing to all pregnant women is the first step toward preventing
HIV infection in the unborn child. More than 90% of HIV infected children acquire the
virus from their mother during pregnancy, and labor and delivery11. An increased chance
of transmission to the baby is also prevalent when a woman becomes infected with HIV
while she is pregnant or breastfeeding12. Therefore, expediting assessment of
antiretroviral treatment eligibility and antiretroviral treatment initiation is a priority for
HIV infected pregnant women11. Confirmation of a mother’s HIV status can provide an
entry point for the care of the mother, HIV exposed infant, and other members of the
family that could possibly be at risk. The exposed infant then will have the opportunity
for early HIV testing and will be provided with life saving treatment13. Prevention of
mother to child transmission (PMTCT) is an integral component of combating Pediatric
HIV/AIDS. According to JHU TSEHAI, estimates of HIV transmission rates from
women to children are about 20-40%12. The timing and transmission rate of pregnant
women that are HIV positive is as follows:
Figure 1.1: Estimated risk and timing of MTCT in the absence of interventions12
Timing
Transmission Rate
During Pregnancy
5-10%
During Labor and Delivery
10-15%
During Breastfeeding
5-20%
Overall without Breastfeeding
15-25%
Overall with breastfeeding to 6 months
20-35%
Overall with breastfeeding to 18-24 months
30-45%
10
International Center for AIDS Care and Treatment Programs, Pediatric Disclosure (2006)
11
Federal HIV/AIDS Prevention and Control Office Federal Ministry of Health, Guidelines for Prevention
of Mother-to-Child Transmission of HIV in Ethiopia (July 2007)
12
HIV Care and Adult ART: A Course for Healthcare Providers. Courtesy of Technical Support in
Ethiopia for HIV/AIDS Initiative (TSEHAI-Johns Hopkins University), Women: HIV, ART and PMTCT-A
Course for Pharmacists
13
Federal HIV/AIDS Prevention and Control Office Federal Ministry of Health, Guidelines for Pediatric
HIV/AIDS Care and Treatment in Ethiopia (July 2007)
6
Mother to child transmission is the largest source of HIV infection in children
under 1514. In order to reduce transmission as early as possible, ART must be given to
the mother and infant. Research has proven that the usage of HAART (Highly Active
Antiretroviral Treatment) can reduce the risk of mother to child transmission to less than
2%14. ART administration during pregnancy and postpartum to mother and newborn, as
well as maintaining a healthy balanced diet, are fundamental for lowering the risk of
transmission14. Although a national guideline is available by the Ministry of Health for
service providers in regards to HIV treatment, care and support, please refer to the
appendix for a summary of these services.
The pregnancy outcome goals for service providers involved in PMTCT should
include having an uncomplicated pregnancy, a healthy uninfected infant, and a healthy
mother who has not compromised her future options for HIV therapy14. Many PMTCT
programs may not be effective at start up, which can be frustrating and difficult for
providers and others involved in implementing services. Potential gaps that indicate low
program efficiency and service improving actions that can be taken in health facilities
and communities can be found in the appendix.
Recommendations
Prior to 2002, Pediatric HIV care was limited to the provision of cotrimoxazole
preventative therapy and other supportive care. Between 2002-2003, free ARTs were
made available in a few private institutions and government hospitals; selected pediatric
HIV/AIDS cases were treated with crushed tablets15. Then in 2005, free pediatric ART
formulations were available expanding pediatric ART service to many health
institutions15. Nevertheless, barriers to care and treatment still exist in technical and
developmental aspects. Diagnostic challenges, relative failure of effective PMTCT,
infrastructure, and human resource requirements are some of the barriers encountered15.
Diagnostic challenges fall in the line of identifying exposed infants, complexity
of HIV testing technology, and specimen requirements (whole blood vs. dried blood
spots). Failure of effective PMTCT is observed when health centers have low PMTCT
uptake and follow-up due to a lack of proper implementation and monitoring.
Infrastructure barriers occur when trying to transform health systems accustomed to
acute, episodic care into systems capable of providing chronic care15. Human resource
requirements are a significant problem due to high staff turnovers, resulting from
underpayment and work overload, as well as lack of proper training. Lack of pediatric
comfort amongst providers is also a human resource issue that requires urgent attention15.
This is perhaps due to pediatric training not being very thorough. Nevertheless, during
the interview with Dr. Tsegaye, it was mentioned that national one month service
provider training has extended their training on pediatric HIV/AIDS to two weeks. This is
a great improvement in pediatric care and treatment since it used to be a one day training
only.
14
HIV Care and Adult ART: A Course for Healthcare Providers. Courtesy of Technical Support in
Ethiopia for HIV/AIDS Initiative (TSEHAI-Johns Hopkins University), Women: HIV, ART and PMTCT-A
Course for Pharmacists
15
International Center for AIDS Care and Treatment Programs, Pediatric HIV/AIDS Overview 2009
7
In order to overcome these barriers, ICAP has provided some mechanisms to
tackle and overcome these challenges16. These mechanisms are as follows:
-Expanding and strengthening the entry point for pediatric services through
establishing a strong linkage between PMTCT and ART service, taking a family centered
approach, making an effective linkage with orphanage and community, and service
delegation and roll out.
-Expanding early infant diagnosis by enhancing case findings and referral, linking
PMTCT to infant follow-up, and ensuring follow-up and comprehensive care for exposed
infants.
- Implementing an effective PMTCT program by engaging mothers and their
families in comprehensive care and treatment, point of service testing for pregnant
mothers, and providing HAART for eligible mothers and effective prophylaxis for
mothers who are eligible.
-Increasing pediatric care and treatment through providing minimum standard of
care for all HIV-infected children, provision of HAART for all eligible children, family
support and psychosocial support, and increasing availability of and access to pediatric
ART.
In relation to adherence, some working group recommendations have been
presented by the National Institute of Health and partners to help service providers
maximize adherence among their patients17. The recommendations are as follows:
-Service providers should discuss developed strategies to maximize adherence prior to
initiation of antiretroviral therapy and again at the time of changing regimens.
-Adherence to therapy must be stressed at each visit, along with the continued exploration
of strategies to maintain and/or improve adherence.
- Multiple methods of determining adherence to antiretroviral therapy should be used
simultaneously (e.g. quantitative self-report, pharmacy, refill checks, pill counts).
- A non-judgmental attitude and trusting relationship will foster open communication and
facilitate assessment of adherence.
Adherence preparation is also vital for caregivers and for service providers. The
who, what, when, and how of medication administration should be addressed in the
manner of18:
-Who will administer the medications?
- Everyday? Weekdays and weekends?
-What medications will be given?
-Familiarity with medication
-When will medications be given?
-Establish specific times and routines
-How will medications be given?
-Details of administration: using syringes or measured spoons, cutting and
crushing tablets, with or without food, mixed with beverage, mixed together, etc.
16
International Center for AIDS Care and Treatment Programs, Pediatric HIV/AIDS Overview
17
Comprehensive, up-to-date information on HIV/AIDS treatment, prevention, and policy from the
University of California San Francisco, Antiretroviral Management –U.S. Guidelines
18
International Center for AIDS Care and Treatment Programs, Pediatric Adherence(2006)
8
Pediatric Communication Barriers and Strategies—Uganda
The following information was obtained from the Pediatric Communication
Strategy developed in Uganda19.
Studies conducted in Uganda have shown similar challenges and obstacles
encountered in Ethiopia. Many providers still lack knowledge about specific pediatric
ART issues, and do not have the skills to communicate with caretakers and clients around
complex and sensitive issues such as disclosure, dealing with stigma, and the very real
challenges of adherence. In addition, there are few “child/adolescent” friendly services
where young people can feel at ease and have their needs addressed. Linkages between
PMTCT services are still limited, leading to missed opportunities for follow-up and
getting children on treatment. Strategies for facilitating access to services call for:
scaling up early HIV diagnosis and care; strengthening family planning services for HIV
positive women; availing convenient pediatric formulations (tables, syrups); and,
strengthening linkages between PMTCT and other HIV services.
Caretakers of children who may need ARVs face many barriers to getting the
children linked to services and started on ARVs. These may be financial (cost of
transport to get the drugs, competing demands like food expenses); lack of awareness that
services exist and are free; frustration with services where there are long lines, delays in
receiving test results; and untrained counselor; and a host of inter-related psychosocial
issues revolving around disclosure, stigma and resulting discrimination. Uptake has been
shown to increase when caretakers are aware of HIV testing, care and treatment services
and believe accessing them will make a difference in the children’s lives as well as their
own.
Barriers to adherence for caretakers of children include: drug fatigue; feeling it is
too difficult/not worth it/don’t care; stress of timing drugs all the time; being too busy;
not involving others – alternative caretakers and health workers; and, concerns about
disclosure and stigma.
Treat For Life (TFL) Campaign
The Pediatric ART Communication Campaign is a second phase of “Treat for
Life”, a campaign aimed at educating the public about AIDS treatment and giving hope
to those living with HIV and AIDS. Key messages of the campaign are: ART is a
lifetime commitment; people can live long and healthy lives with the right combination
of drugs; ART is medically supervised treatment; not everyone who has the virus needs
to go on ART right away; people who are not ART can still infect others and get reinfected; ART is not a cure for HIV/AIDS; get tested early.
Below is a detailed explanation of the Pediatric ART phase.
19
Joint Clinical Research Centre, Pediatric ART Communication Strategy (2007)
9
Audience: caretakers of children and adolescents at risk of HIV
(Includes HIV positive parents and caretakers of children who were orphaned by AIDS)
Desired Behaviors:
 Get children tested for HIV
 If HIV positive, get the child enrolled in ART clinic care (e.g. find out if eligible
for ARVs, get started on medication if eligible, and get counseling)
Reasons why they are not currently taking children for testing and ART services:
 Living in denial: Many caretakers are in denial about their own status and do not
want to confirm it by having the child/children tested.
 Stigma/rejection: Stigma is still prevalent in many families and communities and
a positive diagnosis could subject them to stigma and discrimination, rejection
and gossip that follows. The stigma may stem from the child’s or their own status
being revealed.
 Lack of awareness that HIV tests and treatment are available for children: There
has been relatively little communication around the services that are available for
children and many caretakers do not know they exist and are free. Additionally
with few linkages between PMTCT and testing, care and treatment for children,
many families have “gotten lost in the system.”
 Perception/belief it won’t make a difference: Many do not believe getting
children on ARVs will make a difference in their lives (the child’s and the
caretaker). Others do not care, as they are overburdened by too many children to
look after, or may be elderly and not have the energy to invest in taking the child
to the clinic.
 Health Workers not adequately trained in pediatric ART: Even if they go for
services, providers may give them misinformation or treat them in a manner that
does not encourage follow-up.
 Lack of Finances: Although HIV testing and ART services are free for children,
many are not aware of this. Even so, the additional costs for transport may be
perceived or realistically too great a burden.
Key Barrier/Constraint to adopting the behavior:
 Ignorance (about available services)
Communication Objective
 By the end of the campaign, all care givers of children and adolescents at risk of
HIV will know about HIV testing, care and treatment services for children and
adolescents and where they can be accessed.
Benefit
 You will feel a sense of relief when you have knowledge about the child’s status
and will be able to act from an informed point of view.
10
Support points
 Locations of HIV testing services (note: available at all TFL sites, but we need to
get clarity on what to say re: MOH services)
 Children can be tested for HIV and its free
 Children can take ARVs and they are free
 Advice on who should be tested – includes: children of parents who tested HIV
positive or where one or both parents died of AIDS; children who are orphaned
and vulnerable due to AIDS; children who are falling sick often.
 Testimonials from parents/caretakers about how helpful ARVs have been
 Facts: there are approximately 25,000 children who are both HIV+ every year and
only 6,000 in total are on ART.
 Without ART, most HIV positive children (66%) will die by the time they are 3
years old; 75% will die before they are 5.
 With ARVs, HIV+ children can live into adulthood and lead productive lives.
Communication Channels and Approaches:
 This audience can potentially be reached by mass media given their numbers.
Radio Diaries can be an option to follow a caretaker and child as they navigate
uptake. Interpersonal communication will also play a key role – tools for
providers to help counsel caretakers and that help caretakers talk to the infected
children can be produced. Option may include a “talking book” or other highly
visual material. Caretakers should be reached where they will most likely be
found, though PMTCT clinics, HIV testing sites, OVC programs, Adult ART
programs, Home Based Care programs and so on. In addition signage that
indicates services are available to children should be clearly displayed.
Audience: caretakers of children on ART
Desired Behaviors:
 To discuss adherence challenges with the health worker and other caretakers and
make plans to overcome them.
Reasons why they are currently not doing this:
 Attitudes concerning Health Worker: Many caretakers do not see the Health
Worker as an ally and are fearful to discuss adherence challenges with them.
They may want to maintain their reputation as a good caretaker and not be seen as
doing a bad job looking after the children. Many counselors are not trained in
pediatric counseling and may not be sensitive to the need of the caretaker or
respond appropriately to their challenges. They may scold them for not taking
better care of the child, which may result in the caretaker being even less open.

Relationship with other caretakers: in many cases there is more than one caretaker
looking after the child. But it may be that no one person wants to take
responsibility for the child, and so there is no consistency of care. All of the
caretakers may not be aware of the child’s status or know about the ART regimen
they need to follow and why. Caretakers may not wish to reveal to others that the
11




child is HIV positive, because of disclosure issues and fear of stigma. Often the
person who goes to the health care worker does not communicate to the other
caretakers. Other times, the main caretaker may not know how to approach the
others or how to improve their adherence behavior. In some cases, cultural
barriers may make it difficult for one member of the family to discuss the issue
openly with other family members. (Example: among the Baganda, daughters-inlaw cannot openly raise issues with their father-in-laws.)
Disclosure to the Child: Although disclosure has been shown to help increase
adherence, many caretakers are reluctant to disclose for fear of the child’s
reaction and because they are not sure how to approach it. They may also be
concerned that the child will disclose to others, and in doing so, reveal their status
as well, subjecting them both to stigma and its negative impact. (Note: the
preference is usually to have the health worker disclose to the child.)
Burden of care: Many caretakers are looking after several children and do not feel
they have the energy, time and resources to continue with the ARV regimen and
continued visits to the clinic. Related to this, many caretakers may not care about
the “default” providers.
Lack of belief in ARVs: Many caretakers do not believe that ARVs will make a
difference/are not effective and have given up hope for the child’s future, leading
to lack of commitment.
Lack of understanding of the rights of children
Key Constraint:
 Caretakers lack hope for the child and thus lack commitment to treatment.
Communication Objective:
 By the end of this campaign caretakers of children on ART will know and believe
that children taking ART correctly can live longer and productive lives.
Benefit:
 Trust in ARVs and ensure that the child adheres to them (correctly takes doses
every time they are supposed to) and your child will grow to become a productive
family member and you will be appreciated by them and by others.
Support points
 The child will not be sick as often if they are on ARVs
 You will save money by adhering to the free ARVs, vs. having to go to the clinic
when they are sick
 Disclosing to the child helps relieve some of the burden as they can be involved in
adhering – provide advice on when to disclose and skills on how to do it.
 The consequences of not adhering can be very severe and far outweigh adhering
 If you are open and honest with the health worker, they can do a better job of
helping you and be your partner in caretaking
 Provide information/model how to talk to alternative/other caretakers and tips for
reminding them on how to help the child adhere
12


The person who is responsible for caretaking needs to come to the clinic to get the
medication and all the information; this will make adhering easier
Testimonials from caretakers who can talk about how the quality of life for the
child and for them has improved with adherence
Communication Channels and Approaches:
 This approach will be primarily through inter-personal channels. Tools for health
workers to assist them in counseling caretakers, as well as tools to help caretakers
talk to others and disclose to the child should be developed. They may include a
“talking book”, or other interactive, highly visual materials. Tips or aids to help
the caretaker and the child adhere are also important. The audience should be
reached at ART centers and their catchment areas, OVC programs, Home Based
Care and so on. Radio Diaries may be an option to highlight the challenges of
adherence and the strategies people have found to overcome them.
13
Appendix
Case Studies
Stigma/Hopelessness


A mother bursts out crying. She was diagnosed with HIV 6 months before she
became pregnant. She is too ashamed to tell anyone and she is afraid that her
baby has HIV and will die20.
Mother says that initially baby Alem could not hold her head without support but
now she is no longer able to do this1.
Disclosure/Stigma


When you ask grandmother Bogalech what granddaughter Desta knows about her
health she becomes quiet. You notice a few tears. She doesn’t want to discuss
Desta’s problem. She says that the child is taking medications now and will be
fine. Aunt Amsale feels Desta should know about her illness. She and
grandmother Bogalech have fought about it several times. They both take care
of Desta, but Amsale also has her babies to raise. She doesn’t want to fight with
her own mother1.
Nigist is a 12 year old girl who lives at home with her parents and two younger
siblings. Her mother, Melkam, and her new 6 month old brother are both HIV
infected. Melkam wants to tell Nigist about her own and the baby’s HIV status.
Abede, Nigist’s father, however, strongly objects. During recent clinic visit
Abede told Melkam in front of the treatment team that he does not want Nigist to
learn anything about HIV1.
Adherence/Responsibility

You decide that Mom should see the counselor. The counselor asks Mom how
things are going financially for the family since the outreach worker seems to
think she is working more. Mom says that the school fees for Abede have been an
extra burden on her and since she can’t get in touch with her husband, she has
been working longer hours to pay the fess for his books. She is really tired and
doesn’t see the older children as much, although the baby often spends the days
with her at the fruit stand. Sometimes she gets home so late that the children are
already in bed. Mom admits that sometimes he misses his medicines on the nights
20
International Center for AIDS Care and Treatment Programs, Baseline Pediatric Training
Curriculum:Ethiopia (Trainers’ Manual)(2006)
14
that she ha to work late, since Grandma still doesn’t know about the
medications21.

The counselor reports that the mom has started taking care of her sister who is
also sick with HIV. The sister lives in another city and the cost of travel is a
burden to the family22.

Dad is supposed to give Teferi his medication but the counselor is concerned that
he may not be attentive to the task. The last time they picked up medication at the
pharmacy they reported still having some left3.
Burdens of Family
 The nurse speaks with the counselor who has been working with the family.
He states that the family has not had much food in the house since the husband lost
his job recently. The family also must now walk to the clinic (1 hour each way)
because they cannot afford a taxi. The family also recently expanded to include two
nieces whose parents died in a car accident3.
21
22

Mother sells vegetable at the market in town every day carrying the baby with
her. Getting meals for the baby is difficult. She is married with 2 older children.
Her husband operates a bicycle taxi in town. Mother is main breadwinner since
husband spends most of his income on alcohol23.

With support of the nurse the outreach worker, Nigist tells her story. Her husband
is away from home, working on a farm. Although he had previously sent home
money, he has not done so for many months. Nigist is worried that her husband
has abandoned her and Yared, and ashamed that she has no money with which to
buy food4.
International Center for AIDS Care and Treatment Programs, Pediatric Adherence(2006)
International Center for AIDS Care and Treatment Programs, Pediatric Adherence(2006)
23
International Center for AIDS Care and Treatment Programs, Baseline Pediatric Training Curriculum:
Ethiopia (Trainers’ Manual)(2006)
15
Potential Gaps and Strategies to Increase PMTCT24
Program Effectiveness
Gaps
High Stigma and discrimination
Low male involvement
Strategies
- Model respect for women and PLWHA
during all client contacts and in the
community
- Take a visible leadership in community
activities to address stigma and
discrimination and support IEC and BCC
- Speak out about gender inequality
especially practices that make women
vulnerable to HIV and limits their ability to
use PMTCT
- Involve PLWHA in campaigns to reduce
stigma and discrimination and to be part of
prevention and care services
- Involve local officials, political leaders,
community and FBO leaders to ensure that
other sectors such as agricultural extension
workers, education workers, youth
associations, women’s associations,
PLWHA and health workers are aware of
the problem and collaborate to resolve it
- Expansion of treatment, care and support
services
- Strengthen/facilitate pro-poor micro
financing schemes
- Promote involvement of men in PMTCT
and MOH programs as partners, fathers and
concerned community members
- Promote couples counseling and testing;
involve men with women’s consent
- Inform men about PMTCT/MOH services
and infant feeding
- Promote a male-friendly environment at
clinics by having flexible hours
- Involve local officials, community and
FBOs to ensure that other sectors such as
24
Federal HIV/AIDS Prevention and Control Office Federal Ministry of Health, Guidelines for Prevention
of Mother-to-Child Transmission of HIV in Ethiopia (July 2007)
16
Poor community uptake of available
services
High percentage of women do not get
skilled antenatal, delivery and postpartum
care
High percentage of women and children do
not use the full course of prophylaxis
High staff turnover and low staff
motivation
agricultural extension workers, education
workers, youth associations, women’s
associations and health workers to improve
male involvement
- Make PMTCT services integrated, routine
part of care
- Make services an integrated, routine part
of MNCH and other health care services.
- Maintain and ensure client confidentiality
and privacy. Make sure clients understand
that confidentiality and privacy will be
maintained.
- Involve local officials and community
leaders, FBO, through social mobilization
to ensure that other sectors such as
agriculture extension workers, educations
workers, youth associations, women’s
associations and health workers are aware
of this problem and can work to improve
uptake.
- Promote skilled delivery/through
IEC/BCC from community level workers
- Ensure that services are of high quality
and promote quality to boost community
confidence in services
- Let mothers take nevirapine home to take
at the onset of labor
- Make sure maternal services where
women go for childbirth can identify
women in need of prophylaxis and act
accordingly
- Stress importance of adherence and of
making birth plan/emergency preparedness
to deliver at the health facility
- Involve male partner in counseling
- If the woman can’t follow the course
openly, help her plan how to use it
privately
- Strengthen care and support mechanisms,
such as mothers’ support groups to help
women and families address challenges in
utilizing services
- Develop performance-based monetary
and non-monetary recognition schemes
(salary increment, staff housing,
certificates, newsletter acknowledgement,
17
Staff not performing up to standard
and other schemes)
- Delegate tasks/responsibilities to
qualified mid-level health
professionals/non health professionals
- Regulate updates and on-the-job training
- Increase training support to facilities to
cover as many providers as possible
through on-the-job training and clinical
mentoring
- Provide job aids and follow-up on
training within 8-10 weeks of training, at
the latest
- Introduce PMTCT performance standards
at facilities to motivate and help providers
improve performance and assess service
provision
- Provide supportive supervision and
integrate PMTCT in supervisor training
and supervisor checklists. Supervision
should cover community outreach as well
as facility-based activities
Summary of Treatment, Care and Support Services25
HIV-infected women and their partners:
- Psychosocial support
- Nutritional support
- Reproductive health care including family planning counseling and services
- Antiretroviral therapy and support
- Prevention and treatment of opportunistic infections
- Management of acute illness
- Palliative care
- Community-based support for the well-being of the family including socioeconomic and legal support
HIV exposed and infected infants and children
- Routine newborn and child health care, including growth monitoring and
immunization according to national Extended Program on Immunization (EPI)
schedule for all children
- Diagnosis and treatment for all health needs, according to national Integrated
Management of Child Illness ( IMCI) protocols
- Nutrition counseling and support for both infant and mother
- HIV care and treatment including antiretroviral treatment per the national
guideline for infants and children
- Opportunistic infection prophylaxis as indicated
25
Federal HIV/AIDS Prevention and Control Office Federal Ministry of Health, Guidelines for Prevention
of Mother-to-Child Transmission of HIV in Ethiopia (July 2007)
18
Families with HIV-infected women or infants:
- Home-based care and community support
- Parent-to-child HIV transmission education, including partner notification
- HIV testing for other children in the family of an HIV-positive woman
19
References
Federal HIV/AIDS Prevention and Control Office Federal Ministry of Health, Guidelines
for Pediatric HIV/AIDS Care and Treatment in Ethiopia (July 2008), Retrieved 02
February 2009 from <http://fitun.etharc.org/resources/guidelinesresources.html>
International Center for AIDS Care and Treatment Programs, Baseline Pediatric Training
Curriculum: Ethiopia (Trainers’ Manual) (2006), Retrieved 30 December 2008
from<http://www.columbiaicap.org/resources/peds/trainingresources/baselinetrainingtrainers.pdf >
International Center for AIDS Care and Treatment Programs, Pediatric Disclosure
(2006), Retrieved 30 December 2008 from
<http://www.columbiaicap.org/resources/peds/trainingresources/ped_disclosure.pdf>
International Center for AIDS Care and Treatment Programs, Columbia Clinical Manual
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<http://www.columbia-icap.org/resources/peds/files/pedsclinicalmanual/
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International Center for AIDS Care and Treatment Programs, Pediatric Disclosure
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International Center for AIDS Care and Treatment Programs, Pediatric Adherence
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Federal HIV/AIDS Prevention and Control Office Federal Ministry of Health, Guidelines
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International Center for AIDS Care and Treatment Programs, Pediatric HIV/AIDS
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<http://fitun.etharc.org/resources/aidseducationtrainingresources.html>
20
Comprehensive, up-to-date information on HIV/AIDS treatment, prevention, and policy
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Guidelines, Retrieved 12 February 2009 from <http://hivinsite.ucsf.edu
Joint Clinical Research Centre, Pediatric ART Communication Strategy (February 2007),
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21