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FACTORS INFLUENCING THE UPTAKE OF EARLY INFANT
DIAGNOSIS OF HIV SERVICES:
A Case study of Lira District
A Postgraduate Dissertation Presented to the Institute of Health Policy and
Management in Partial fulfillment of the Requirements for the award of
Master of Science Degree in Public Health
International Health Sciences University
Aguze George
2009-MPH-RL-004
DECEMBER, 2011
i
DECLARATION
I hereby declare that this work is original and it’s a result of my own analysis and that no part has
been presented anywhere for an academic award.
Signed: --------------------------------------------------
Aguze George
(Researcher)
Date: ------------------------------------------------------
Signed: ---------------------------------------------------
Dr Nick Wooding
(Supervisor)
Date: ------------------------------------------------------
ii
DEDICATION
I dedicate this study to the memory of my late father, Julius Peter Okwir, my mother
Alisandarina Alip, who with minimal income levels sacrificed to pay for preliminary education;
my beloved wife Betty and my daughter Alip Darlene-Aguze and my sons Jesse Eya and Nissi
Okwir for their emotional support during the study program.
iii
ACKNOWLEDGEMENTS
I am deeply indebted to Dr Nick Wooding my supervisor for his concerted effort, guidance and
continuous correction of my manuscript. My thanks also go to Dr Griet Samyn and Dr John
Odaga, and colleague Jane Bua for their support and encouragement. I am also indebted to the
research assistants who helped me collect data which made this work a reality, my wife Betty
Aguze for her back up throughout the course. Lastly my sincere thanks go to my fellow students
Patta Emmanuel, Abok Maxwell and many others for their cooperation and togetherness during
the study program.
iv
ABSTRACT
BackgroundEarly infant diagnosis of HIV is essential for the implementation of early HAART, associated with lower mortality in HIV-infected infants.Though it is important, very few children under the age of one are currently being diagnosed using the DNA-PCR test and subsequently receiving treatment. This study set out to investigate factors that influence early infant diagnosis services, assess the level of understanding of health care providers and establish the quality of services rendered to clients attending EID centres in Lira district.MethodsAn explorative cross-sectional study was conducted; a stratified random sampling technique and Kish’s formulae were used to determine eligibility and sample size. Overall a total of 153 participants were interviewed. Study participants included: HIV positive breast feeding mothers, caretakers, laboratory personnel and health managers. Data was collected through questionnaire and key informant interviews and analysed using Epi Info. 2004.
ResultsThe study found that of the key respondents (n=153), the majority (59%) were aged between 19-30 years. Most respondents (70%) were biological mothers and only 58% married. Most mothers (59%) were housewives while peasant farmers accounted for 26%. Only 15% were engaged in other related businesses. Most families had an average monthly income levels of less than 20,000 UG Shs with only 12% earning more than 100,000 UG Shs. On religious affiliation, the majority (77%) came from mainstream churches (Protestant & Catholics) followed by Pentecostals 20%. Regarding level of education (N=153), the majority 48%, 22% attained primary and secondary education levels respectively, with a significant portion (15%) having no formal education, as only 3% reached university level.
Most people (77%), traveled a distance of more than 5km to get to the health facility. Of 137 mothers interviewed, only 23% attended ANC during pregnancy at least 4 times as recommended, while the majority (58%) only attended 1-2 times with only 20% attending at least 3 times during their pregnancy. The majority (61%) delivered at the health centre, significantly 29% delivered at home and 8% in the hands of TBA. (N=134) 66% had ARV prophylaxis for PMTCT during ANC; of note, up to 34% missed out. The uptake of ARV prophylaxis for PMTCT soon after delivery was only 60 %.
Regarding Dry Blood Samples taken (N=153): the uptake of EID services was low as up to 62.7% DBS samples for the HIV exposed babies were taken for the first time while up to 37.3% of the children did not have their samples taken for a DNA PCR test. Out of those who had their DBS samples taken for the first time only (n=96) 40% had the DBS samples taken for the second time while the majority 60% missed out. Most importantly on duration for DBS results *(n=96), 70% took between 1>2 months with only 19% taking <1 month. Only 38% of the laboratory personnels had very good understanding of DBS sample techniques.
ConclusionsThis study found out that long turnaround time, distance to EID centres, irregular logistic and supplies for EID, low average monthly family income levels, and lack of resources negatively influenced the uptake of EID services in Lira district. Therefore, hands on and deliberate attempts to design effective programs to scale up EID services in the district should be put in place. Additionally more evaluative research should be done in areas of paediatric services uptake to help set an evidence based approach in policy formulation.
v
TABLE OF CONTENTS
List of Figures...............................................................................................................................Vii
List of Tables................................................................................................................................Viii
List of Acronyms...........................................................................................................................x
CHAPTER ONE: INTRODUCTION 1Background of the study 2Statement of the Problem 5Significance of the Study………………………………………………………………….…….7Main Objective…………………………………………………………….………….…………7
Specific Objective……………………………………………………………………….7Research Question………………………………………………………….……………………8Conceptual Framework…………………………………………………………………………8
CHAPTER TWO: REVIEW OF RELATED LITERATURE........................................................9
Introduction....................................................................................................................................9
Trends of HIV Epidemics in Uganda.....................................................................................11
Overview of progress towards elimination of New Paediatric HIV infections............................11
High-Burden Regions.........................................................................................................13
PMTCT Overview in Uganda............................................................................................13
Breast Feeding in the HIV context.....................................................................................14
HIV Transmission in Infants..............................................................................................15
Infant/Young child HIV strategies.....................................................................................15
Overview of Paediatric HIV & AIDS in Uganda...........................................................................16
Early Infant Diagnosis, Progress in East Africa.............................................................................17
Synopsis of Early Infant Diagnosis of HIV………………………..……………………...……..18
HIV Diagnosis in Infants………………………………………………………………………..20
Antibody Testing in Infants……………………………………………………………………...20
Virologic Testing in Infants………………………………………………………………...…21
The Importance of Early Infant Diagnosis…………………………….………………………21
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CHAPTER THREE: METHODOLOGY...............................................................................................24
Research Design............................................................................................................................25
Study Area.....................................................................................................................................26
Study Population ……………………………………………………………………….…..……26
Sampling Frame………………………………………………………………………….……....26
Sample Size Determination...........................................................................................................27
Sample Technique.........................................................................................................................27
Quality Control..............................................................................................................................28
Training of Research Assistants.........................................................................................28
Pretesting......................................................................................................................................28
Data and Results Management....................................................................................................29
Data Collection Tools........................................................................................................29
Data Management and Analysis.......................................................................................29
Results Dissemination..................................................................................................................29
Ethical Considerations.................................................................................................................30
Limitation of the study………………………………………………………………………….30
CHAPTER FOUR: DATA PRESENTATION AND ANALYSIS.........................................31
Introduction……………………………………………………………………………………………..31
Table 1: Age Ranges of the Key Respondents...............................................................................31
Table 2: Relationship of Informant to Child……………………………………………………. 32
Table 3: Marital Status...................................................................................................................32
Graph 1: Occupation of Mothers....................................................................................................32
Graph 2: Average Monthly Family Income Levels…………………………………………...…33
Graph 3: Showing Religious Affiliation…………………………………………………………34
Table 4: Level of Education *(N=153)…………………………………………………………. 34
Pie Chart 1: Showing Distance from the Health Facility………………………………………..34
Table 5: Number of ANC Visits during pregnancy………………………………….…………..35vii
Graph 4:Showing ANC Attendance During Pregnancy………………………………………....36
Graph 5: Showing Testing and Results during Pregnancy………………………………………36
Pie Chart 2. Showing ARV prophylaxis for PMTCT * N= (130)……………………………..37
Pie Chart 3: Showing the uptake of ARV prophylaxis for PMTCT…………………………..... 38
Table 6: Table 6: Showing the uptake of ARV prophylaxis for PMTCT…………………........38
Graph 6: Showing place of delivery *(N=134)………………………………………………....39
Graph 7: DBS Samples taken first Time………………………………………………………...39
Pie Chart 5: DBS Sample taken for the second time……………………………………………39
Table 7: Duration for DBS results………………………………………………………………40
Table 8: Health education during ANC Visits………………………………………………….40
Table 9: Checking the understanding of laboratory cadres on early infant diagnosis………….41
Key Informant interviews………………………………………………………………………41
CHAPTER FIVE: Discussion……………………………………………………………….. 43
Introduction…………………………………………………………………………………….43
Discussion………………………………………………………………………………………43
Socio Demographic Characteristics…………………………………………………………….43
Average monthly income levels………………………………………………………………..45
Level of Education……………………………………………………………………………..46
Distance from the Health Facility …………………………………………………………….47
Antenatal Visits …………………………………………………………………………………47
Dry Blood Samples………………………………………………………………………………49
Duration for DBS Results……………………………………………………………………….50
Health education during ANC Visits……………………………………………………………51
Checking the understanding of laboratory cadres on early infant diagnosis……………………52
CHAPTER SIX: CONCLUSIONS AND RECOMMENDATIONS………….……….…..53
viii
References……………………………………………………………………………………..54
Questionnaire…………………………………………………………………………………..59
Maps……………………………………………………………………………………………59
ix
LIST OF ACRONYMS:
AIDS Acquired Immunodeficiency Syndrome
ART Antiretroviral Therapy
ARVs Anti-retroviral Drugs.
CD4 Cluster of Differentiation 4
CDC Centres for Disease Control
DBS Dry Blood spots
DNA Deoxyribonucleic Acid
HIV Human Immunodeficiency Virus
HTC HIV Testing and Counselling
IHSU International Health Sciences University
IMCI Integrated Management of Childhood Illnesses
JCRC Joint Clinical Research Centre
MDGs Millennium Development Goals
MoH Ministry of Health
PCR Polymerase Chain Reaction
PMTCT Prevention of Mother to child transmission of HIV/AIDS
PPTCT+ Prevention of Parent to Child Transmission
RCT Routine Counselling and Testing
TAT Turnaround Time
UNAIDS Joint United Nations Programme on HIV/AIDS
UNICEF United Nations Children Fund
VCT Voluntary Counselling and Testing
VHT Village Health Teams G
WHO World Health Organisation
x
CHAPTER ONE: INTRODUCTION
INTRODUCTION
The number of children who have HIV continues to grow with recent estimates suggesting that
globally about 2.0 million children younger than 15 years of age have HIV, about 90% of whom
live in sub-Saharan Africa (UNAIDS, 2009). In 2007 alone, an estimated 370 000 children were
newly infected with HIV, mainly through mother-to-child transmission.
Sub-Saharan Africa remains the region most affected, followed by Asia. In Uganda the burden of
HIV/AIDS in children (MoH, 2009) is estimated at 15% out of the 1 million people living with
HIV. It is also reported (Elyanu, 2010) that in 2008 out of 124,000 new infections, 20% occurred
in children.
Much as appropriate and timely care interventions to prevent and reduce early morbidity and
mortality in children is critical, access and utilization of EID services is still low. According to
MoH (2009), Early Infant HIV Diagnosis (EID) using DNA PCR technology was started in 2007
and by the end of June 2008, 193 health facilities were providing EID services. Currently EID is
offered at more than 600 health facilities with services already decentralized to some HC IIs.
28,040 HIV exposed babies were tested using DNA PCR between 6 weeks and 18 months of age,
representing only 31% (28,040/91,000) of all HIV exposed babies in the country. Out of those
who were tested, about 10% tested HIV positive as at the time of taking the sample from the
baby; of those found positive, only 1,300 were initiated on ART. (MoH, 2009)
Currently, Lira district, with a projected population, of 377, 800, of which women of child
bearing age form 20% (76,316), it is expected that 5% (18,323) are pregnant with a prevalence
1
rate among pregnant mothers of 6.7%; it is estimated that 1,228 pregnant mothers are suspected
to be HIV positive with children 0-18 months infected with HIV (Lira District Work plan, 2010).
On the other hand, only 21 (48%) out of the 43 functional health facilities in Lira district are
providing PMTCT services with as few as 15 (34%) sites providing limited EID services. In
2007, PMTCT service demand for the whole Lira district was 30,000, yet only 9,406 (31%)
accessed RCT (Aguze, 2009). Also, available data indicates that, out of 320 blood samples for
DBS that were collected from 3 out of the 5 health sub districts and taken to the JCRC Regional
Center of Excellence in Gulu, only 154 (48%) results were received within 12 months; this is
well above the national average turnaround time of 69 days, leaving a gap of 62% of exposed
children unaware of their disease status, hence risking progression into severe disease due to
delayed response in the results feedback. This study therefore set out to examine factors
influencing the uptake of early infant diagnosis of HIV services in Lira District.
BACKGROUND OF THE STUDY
HIV still remains the major global health concern, and the number of people living with HIV
worldwide continued to grow in 2008, reaching an estimated 33.4 million (UNAIDS 2009). The
number of children younger than 15 years living with HIV increased from 1.6 million in 2001, to
2.0 million in 2007. In 2007 alone, children below 15 years accounted for 6% of all worldwide
cases of HIV, 17% of the new infections and 14% of all HIV related mortality. More than 90%
of the children living with HIV are infected through their mothers during pregnancy, at birth, or
through breastfeeding, and in 2008 an estimated 2.7 million new HIV infections occurred with an
estimated 2 million deaths due to AIDS-related illnesses worldwide (UNAIDS 2009).
Steady progress was seen in access to prevention of mother-to-child transmission (PMTCT)
services over the past years with a record 53% of pregnant women who needed PMTCT services
receiving services globally in 2009 (UNICEF/WHO, 2010). But still, many pregnant women and
2
their infants lacked access to these timely interventions. Even though care for infants and
children requires the highest attention, the global treatment coverage for HIV positive children
was 28% in 2009, a notable progress, but the rate is lower than the ART coverage for adults
(36%); it should be noted that only 15% of children born to HIV-positive mothers received
appropriate early infant diagnosis.
“Every day, more than 1000 infants acquire HIV during pregnancy, delivery and breastfeeding. We know how to prevent this,” (Jimmy Kolker, Chief of HIV and AIDS, UNICEF) "While many countries are now showing significant progress, intensified efforts are urgently needed to reach all mothers and children with the most effective treatment and PMTCT interventions for their own health and for the sake of their communities” (UNICEF 2010, Press Release. September 28, 201).
According to UNAIDS (2008), 4.7 million people in Asia were living with HIV, including
350,000 who became newly infected in 2009 as compared to the estimated 1.9 million who were
newly infected with HIV in Sub- Saharan Africa, bringing the total number of people living with
HIV to 22.4 million in Sub–Saharan Africa alone, a figure 5 times higher than in Asia. “While
the rate of new HIV infections in Sub-Saharan Africa has slowly declined, with the number of
new infections in 2008 approximately 25% lower than at the epidemic’s peak in the region in
1995, the number of people living with HIV in Sub-Saharan Africa slightly increased in 2008, in
part due to increased longevity stemming from improved access to HIV treatment. Adult (15–49)
HIV prevalence declined from 5.8% in 2001 to 5.2% in 2008 with an estimated 1.4 million
AIDS-related deaths occurring in Sub-Saharan Africa. This number represents an 18% decline in
annual HIV-related mortality in the region since 2004” (Hargreaves JR et al, 2008).
On the other hand, the available evidence suggests that HIV prevalence in East Africa has
stabilized and in some settings may be declining; however, HIV prevalence reported in Uganda
recently appears to be rising (Wabwire- Mangen et al, 2009), although these trends may partly
be related to the roll-out of antiretroviral therapy programs. In Uganda, about 1 million people
are estimated to be living with HIV and of these, children less than 15 years living with HIV are
3
estimated at more than 110,000 in 2008 alone. According to the MoH national figure, 33,151
children are estimated to be in need of Anti-Retroviral Therapy (MOH ART report 2008); to date
approximately 50,000 children with advanced HIV disease and infants need ART, HIV/AIDS
related deaths are estimated to be 77,000 people (HIV Mode of Transmission Analysis Report
2009).
Despite the tremendous efforts in HIV/AIDS prevention, mother to child transmission
contributes 24% to incidence and remains the third leading source of HIV infections in the
country (National HIV/AIDS Strategic Plan 2007/8-2011/12). The uptake of EID among infants
remains low, estimated at below 50%, since its inception in 2007.
According to JCRC, before the introduction of the dry blood spots only 900 DNA-PCR tests
were done for children in 2006; however, in 2007, after the introduction of the dry blood spots,
the number increased to over 8,000 infants and by the end of June 2009, the PMTCT programme
scaled up EID services to over 600 health facilities which were trained to provide EID services,
up from the initial 150 health facilities providing PMTCT in 2007, yet few infants have been
enrolled in care. Recent reports Kekitiinwa (2009) also indicated that on average, care givers had
to wait 69 days to receive DBS results; a cumulative total of 28,040 HIV exposed babies were
tested using DNA PCR between 6 weeks and 18 months of age, representing only 31% of all
HIV exposed babies (91,000).
The early infant diagnosis has therefore been a milestone in the area of HIV testing, care and
treatment for children much as the demand outstrips the available services with up to 50,000
children with advanced HIV disease and infants needing ART, and only about 17,000 being on
treatment so far (Kekitiinwa, 2009). Also in prevention, it is estimated (Akol, 2010) that Uganda
is still producing between 20,000 to 30,000 HIV-positive children every year, a number that
outstretches the available paediatric care and treatment interventions put in place. It is also
reported (Kekitiinwa, 2009) that the percent of exposed infants tested in 2009 versus the annual 4
target of 82,000 were only 40% (36,995) an indication of a growing demand against limited
capacity.
In Lira district, efforts to scale up paediatric (EID) services have been a priority as it lines up
with the MoH Government of Uganda National HIV Strategic Plan (2007/8-2011/12). In 2007,
PMTCT service demand for the whole Lira district was 30,000, yet only 9,406 (31%) accessed
RCT (Aguze, 2009). Also, available data indicates that out of 320 blood samples for DBS that
were collected from 3 out of the 5 health sub districts and taken to JCRC regional center of
excellence in Gulu, only 154 (48%) results were received within 12 months, leaving a gap of
62% of exposed children unaware of their disease status, hence risking progression to a severe
disease state due to delayed response in result feedback.
STATEMENT OF THE PROBLEM
Early infant diagnosis is a vital intervention which allows countries to provide essential health
services for all children and to continue to make progress in keeping children alive and healthy.
Even though it is widely known that early initiation of ART in children with HIV saves lives, and
that children respond as well to ART in low and middle income countries as in high-income
countries, very few children under the age of one are currently being diagnosed and subsequently
receiving treatment (UNICEF, 2009).
All infants who are exposed to HIV should be tested, even if their mothers received antiretroviral
(ARVs) for PMTCT. Evidence has shown that HIV infection follows a more aggressive course
among infants and children than among adults. Without access to life-saving drugs, including
antiretroviral therapy and preventive interventions such as cotrimoxazole prophylaxis, about one-
third of infants will die by 1 year of age, and 50% by 2 years of age. In 2007, an estimated
270,000 [250,000-290,000] children younger than 15 years of age died of HIV-related causes.
The vast majority of those children were under the age of five and over 90% were living in Sub-
5
Saharan Africa. Many of the 270,000 children who died in 2007 never received an HIV diagnosis
or entered into HIV care. Most of these deaths could have been avoided through early diagnosis
of HIV and timely provision of effective care and treatment.
Despite the achievements made in the scale up and implementation of EID services in the
country, there are still enormous challenges to overcome. One of the biggest challenges faced is
the long turnaround time (TAT) of DBS results, which is on average 2 months. This is
unacceptably long with negative implications on delivery of PMTCT and Paediatric HIV/AIDS
services. Because of this long TAT of results, most mothers do not get to know the status of their
babies. In addition, the rate of loss to follow up of HIV exposed babies and their mothers after
delivery is too high, hindering testing and provision of appropriate care to these babies and their
mothers. Out of the estimated 91,000 exposed babies, only 28,327 babies were tested for HIV
infection. Furthermore, health facilities located deep in rural areas still remain out of reach for
courier services by Posta Uganda contracted by government to transport samples and deliver
results. Poor roads and stock outs of DBS kits and supplies in health facilities further complicate
this.
Data from the MoH suggests that since 2005, there has been significant progress in Paediatric
HIV care and treatment with EID currently offered at more than 600 health facilities, with
services already decentralized to some Health Centre IIs; however, the coverage is still low,
identification of exposed babies still poses a big challenge, and the Turn Around Time for results
is still unacceptably long; linkage of babies into care is still a big challenge as well as loss to
follow up of mothers and babies. This study is therefore set out to examine factors influencing
the uptake of early infant diagnosis of HIV services in Lira District.
6
SIGNIFICANCE OF THE STUDY
Early diagnosis of HIV in infants provides a critical opportunity to strengthen follow up of HIV
exposed children, thus ensuring early access to ARV treatment for the infected child; it also
provides reassuring information to families of uninfected children as well as helping in
evaluation of how effective and efficient PMTCT programs work (CDC 2010)
In Lira district, where the HIV prevalence rate is 6.7% among ANC attendees, it is projected that
1,228 pregnant mothers are HIV positive, and will deliver HIV positive babies (District Health
Work Plan, 2010) On the other hand, only 21 (48%) out of the 43 functional health facilities in
Lira district are providing PMTCT services with as few as 15 sites (34%) providing limited EID
services. A recent district partner report also revealed that out of 144 DBS taken to JCRC Gulu
for DNA-PCR only 79 (55%) results were received by the care givers.
Challenges such as inadequate supplies, delayed feedback, low facilitation, poor M&E for EID
services, knowledge gap, inadequate support supervision of services, poor data management at
facility level, poor HIV/AIDS interventions among children, weak HIV/AIDS coordination
structures at lower levels and poor follow up of the mother-baby pair among others have been
implicated for the low utilization and access of EID services. It is therefore imperative to
examine factors influencing early infant diagnosis services in Lira district.
MAIN OBJECTIVE
To investigate uptake of Early Infant Diagnosis services in Lira district and identify influencing
factors in order to come up with mitigation measures.
Specific Objectives
1. To examine factors that influence Early Infant Diagnosis services in Lira district.
7
2. To assess the level of understanding of health service providers about Early Infant
Diagnosis services
3. To establish the quality of Early Infant Diagnosis service rendered to clients at the service
centers.
RESEARCH QUESTION (S)
1. Does average time on receiving DBS results by the care givers influence EID services?
2. To what extent do the logistics and supply chain management systems influence EID
services?
3. To what extent does the existing data management, monitoring and evaluation process
solve EID problem in Lira district?
4. What knowledge, attitude and practices do health service providers in Lira district have
on EID?
CONCEPTUAL MODEL (FRAMEWORK)
8
Health Systems Factors
• Number Health Facilities providing EID services.
• Level/standard of operating laboratories
• EID centers for Excellence.
• Quality Assurance • Numbers of health care
givers.• Level of skills• High Attrition rates• Low motivation• Service providers attitudes
Poor Uptake of Early Infant Diagnosis of HIV
Services
Family/Mother Factors• Distance to EID centers• Male involvement• Follow-up of mother-
baby pair• Family income• Level of education• Occupation• Marital status• Religion
M&E Reporting Data management
systems Data management
skills Appropriate Reporting
by Sites Monthly
Supervisions.
Governance• Coordination at
District and Health facility level
• Dissemination of guidelines. Stock out of DBS kits
• Logistics and supply chain management
• Time between testing and receiving results
9
CHAPTER TWO: REVIEW OF RELATED LITERATURE
INTRODUCTION
The overall growth of the global Aids epidemic appears to have stabilized (UNAIDS, 2010), with
the annual number of new HIV infections steadily declining since the late 1990s; and there are
fewer Aids-related deaths due to the significant scale up of antiretroviral therapy over the past
few years. The number of children who have HIV continues to grow with recent estimates
(UNAIDS, 2009) suggesting that globally about 2.0 million children younger than 15 years of
age have HIV, about 90% of whom live in Sub-Saharan Africa.
It is also reported (Shaffiq, 2010) that the first cases of HIV in children were identified in 1984;
since then HIV has claimed the lives of around 2.6 million children worldwide. According to the
UNAIDS 2010 report, 370,000 children were infected with HIV through mother-to-child
transmission in 2009, a 24% drop from just five years earlier. In southern Africa, where the
pandemic is at its worst, there were 32% fewer children newly infected. Although the number of
new infections has been falling, levels of new infections remain high, and with significant
reductions in mortality, the number of people living with HIV worldwide has increased.
Global Epidemiology of Paediatric HIV.
The health and welfare of children in developing countries are increasingly affected by the global
HIV/AIDS epidemic. The Joint United Nations Programme on HIV/AIDS (UNAIDS) and the
World Health Organization (WHO) recently estimated that 2.2 million children under the age of
15 years worldwide were HIV positive (UNAIDS & UNICEF 2007); some 14% of new HIV
infections and almost 20% of annual HIV/AIDS-related deaths worldwide occurred among
children (Thorne and Newell, 2007).
10
“It’s clear that the HIV epidemic the world faces today is not the same as when it peaked in 1996. The number of people living with HIV globally is now at 33.4 million and although 2.7 million people became newly infected with HIV in 2008, good news is that this is a decrease by 17% over the last eight years. There have been many successes in the AIDS response in recent times including increases in HIV treatment coverage and prevention of mother-to-child transmission services, and an indication of decline in HIV incidence in some regions. However, at the moment globally five people are becoming infected with HIV for every two people accessing treatment. It is therefore critical that the way we respond keeps pace with and overtakes the epidemic if we are to see a real change in people’s lives, aspirations and futures -UNAIDS Outlook 2010”
Furthermore, children in developing countries are disproportionately affected by HIV, with 90%
living in sub-Saharan Africa. Estimates indicate that HIV infection was responsible for 3% of
under-five deaths globally in 2005 and that the proportion of child deaths attributed to HIV was
greater than 50% in high-burden countries (WHO and UNICEF, 2008). Children are most
commonly infected through mother-to-child transmission (MTCT); without intervention to
prevent it, MTCT can occur in utero, during labour or delivery, and postpartum during
breastfeeding. The first few weeks of breastfeeding are an especially high risk period because the
viral loads in colostrum and early milk are higher than they are in late milk. Without medical
intervention (i.e., antiretroviral drugs, safer infant-feeding practices, and obstetrical interventions
for prevention of MTCT), 20%–45% of infants born to HIV-positive mothers become infected
(WHO, UNICEF, 2007).
Rapid disease progression is a hallmark of paediatric HIV infection; without medical intervention
(i.e., antiretroviral therapy, Cotrimoxazole), 20% of HIV-infected children develop AIDS or die
before their first birthday, and more than 50% die before their second. Children born to mothers
with advanced disease or infected in utero are more likely to experience a more rapid disease
course (Pendergast et al 2007). Untreated, HIV-positive children in resource-poor settings are
three times more likely to die than those in Europe and the United States. Higher mortality rates
are attributed mainly to higher rates of co-infection, micronutrient deficiencies, and malnutrition.
11
HIV-infected children in developing countries present with many of the same infectious diseases
that strike non-HIV-infected children; respiratory infections, malaria, tuberculosis (TB), and
diarrhea. However, when these common childhood illnesses occur in HIV-infected children, the
cases are more serious, recovery is slower, treatment failure is more common, and recurrence is
more frequent (Pendergast et al 2007). Early diagnosis and timely treatment have the potential to
decrease child mortality rates attributable to HIV/AIDS.
Trends of the HIV epidemics in Uganda
The first case of HIV/AIDS was confirmed in Uganda in the early 1980’s on the shores of Lake
Victoria in Rakai district. The epidemic spread quickly, first to towns and cities and along major
road networks mainly via heterosexual contact. In response, the the Ministry of Health (MoH)
established the first National AIDS Control Programme to sensitize and educate the public on
prevention of HIV infection using the Abstinence, Be Faithful, Condom use (ABC) strategy, to
ensure safe blood for transfusion; surveillance; and to initiate programs for care and treatment.
By the early 1990s a large part of the population had succumbed to opportunistic infections, with
a higher prevalence in urban relative to rural areas. It is estimated that the epidemic had its peak
during this period with the average antenatal HIV prevalence of 18 %, 25%-30% in major urban
areas (UAC 2009); it was realized that addressing the epidemic needed a collective effort from
all stakeholders in their different mandates and areas on comparative advantage and capabilities.
Political leadership, political commitment and openness about the epidemic were identified as
key in controlling the epidemic. The second phase of the epidemic was between 1992 and 2000
reflecting a nationwide decline in prevalence. The third stage of the epidemic, as revealed by the
Uganda HIV/AIDS Sero-Behavioural Survey 2004-2005 (UNSBS 04/05), reflects an HIV
prevalence of 6.4 % for the age group 15-49 for both sexes (urban 10.1 %, rural 5.7 %, female
7.5 % and male 5.0 %).
12
Overview of progress toward elimination of new paediatric HIV infections
The just-released UNAIDS 2010 report on the global AIDS epidemic reflects that there is
increased momentum to eliminate pediatric HIV and AIDS worldwide; there is significant
progress in increasing access to services to prevent mother-to-child transmission (PMTCT) of
HIV, reducing new infections in children, and providing treatment for children, mothers, and
families living with the virus. According to the report, 370,000 children were infected with HIV
through mother-to-child transmission in 2009, a 24% drop from just five years earlier. During the
same period in southern Africa, where the pandemic is at its worst, there were 32% fewer
children newly infected; this success is attributed to a rapid scale-up of PMTCT (early infant
diagnosis). It is worth noting that already some African countries such as Botswana, Namibia,
South Africa, and Swaziland have achieved more than 80% PMTCT coverage; several others are
getting closer to this goal, and the global gap in reaching this target is becoming more
concentrated in fewer countries with great unmet need. It is reported by the Elizabeth Glaser
Paediatric AIDS Foundation (2010) that nearly 2.5 million pregnant women worldwide in 2009
were provided with PMTCT services and about a quarter of women received antiretroviral drugs
(ARVs) for PMTCT in low- and middle-income countries.
UNAIDS (2009), also documents progress in reaching more children and pregnant women with
treatment for HIV/AIDS. Overall, more children living with HIV were receiving antiretroviral
therapy, with a cumulative total of 354,000 in 2009; however, children are still less likely than
adults to receive lifesaving treatment, and while about 90% of the world's children living with
HIV are in Sub-Saharan Africa, only 26% of children in need in the region are receiving
antiretroviral therapy, which lags behind the global average. Early identification and treatment of
HIV-positive infants are critical to their survival; without it, most will not live past their second
birthdays.
13
Related studies done in South Africa (Laurie, 2008) indicated that early HIV diagnosis and early
antiretroviral therapy reduced early infant mortality and HIV progression. Avy Viorari (2008)
also reported that a good program for the prevention of mother-to-child transmission of HIV
associated with early infant diagnosis is fundamental to the success of any early antiretroviral-
therapy strategy.
High-burden regions
It is estimated that 2.2 million children under 15 are infected with HIV, 90% of them in Sub-
Saharan Africa. In 2007, an estimated 370,000 new HIV infections occurred in children. Sub-
Saharan Africa is the most affected region – particularly the southern African countries of
Botswana, South Africa, Lesotho, and Swaziland, followed by Asia. Mortality rates among HIV-
infected children in developing countries range from 45%–59%, compared to 10–20% in Europe
and the United States.
PMTCT Overview in Uganda
Mother-to-child transmission (MTCT) of HIV accounts for 90 percent of HIV infections among
children. It is estimated (UNAIDS, 2010) that 2.1 million children under 15 years of age were
living with HIV and 430,000 children were newly infected in 2008. In the same year, 280,000
children died of AIDS-related causes; while adults living with HIV can remain asymptomatic for
years, approximately half of all infants living with HIV will die before their second birthday if
they are not treated (WHO 2010). In the light of these statistics, prevention of mother-to-child
transmission (PMTCT) has received substantial attention in the fight against HIV. Timely initia-
tion of PMTCT can reduce transmission rates in low-income countries from 35 percent to less
than 5 percent (WHO 2010).
14
According to WHO, PMTCT therefore is meant to protect and meet the needs of women and in-
fants throughout and beyond the maternal period. WHO recommends the following four-pronged
approach to PMTCT: primary prevention of HIV infection among women of childbearing age,
prevention of unintended pregnancies among women living with HIV, prevention of HIV trans-
mission from a woman living with HIV to her infant and provision of appropriate treatment, care,
and support to mothers living with HIV and their children, and families.
In line with the above, Uganda has adopted the four pronged approach and some progress is
being made in reaching more mothers and babies with PMTCT services, though too many babies
are getting lost along the continuum of care. A related report (UNAIDS 2009) on trends in
percentage of HIV+ pregnant women and HIV-exposed infants receiving ARVs for PMTCT
suggests that an estimated 53% of HIV-positive pregnant women received ARVs for PMTCT in
2009, as compared to 28% of HIV-exposed infants. With continued efforts to reach women with
PMTCT services, and renewed commitment to reach more HIV-exposed infants with ARVs,
national targets for PMTCT can be met. Though less effective ARV regimens for PMTCT are
still the mainstay, as too few pregnant women living with HIV receive treatment for their own
health (UNAIDS, 2009).
Breast Feeding in the HIV context
For infants of HIV-positive mothers, emerging evidence suggests that breastfeeding can be made
safer if either the mother or the infant takes antiretroviral medication during the period of
breastfeeding. Such interventions, combined with the benefits of exclusive breastfeeding (EBF),
offer an important opportunity to improve the HIV-free survival of future generations of HIV-
exposed infants (WHO, UNAIDS, and UNICEF 2009).
15
An estimated 430,000 children were newly infected with HIV in 2008, over 90% of them through
mother-to-child transmission (MTCT). It is also estimated (UNAIDS 2009) that without treat-
ment, about half of these infected children will die before their second birthday and with no inter-
vention, the high risk of MTCT ranges from 20% to 45%; however, through specific interven-
tions in non-breastfeeding populations, the risk of MTCT can be reduced to less than 2%, and to
5% or less in breastfeeding populations.
Recommended Feeding Guidelines 2010
HIV transmission in infants
Paediatric HIV infection mostly results from mother-to-child transmission of the virus. Infection
can occur at any of three stages: in utero, during labour and delivery, or postpartum during
breastfeeding. Without prevention intervention, 20%–45% of exposed infants might become
infected, with an estimated risk of 5%–10% during pregnancy, 10%–20% during labour and
delivery, and 5%–20% through breastfeeding. The overall risk can be reduced to less than 2%
through a package of evidence-based interventions (WHO, UNICEF, 2007).
Infant/Young Child HIV Strategies;
16
Mothers strongly recommended to exclusively breastfeed until 6 months of age, and con-tinue breastfeeding while introducing complementary feeds until 12 months of age
If mothers cannot provide sufficient animal milk at 12 months, they can continue to breastfeed until able
Exposed infants receive daily NVP prophylaxis until 1 week after cessation of breast-feeding
Breastfeeding is the preferred feeding method. However, if mothers still desire to re-placement feed, they can, if able to meet the AFASS criteria
Infants confirmed HIV-positive should breastfeed exclusively for 6 months, & continue breastfeeding while adding in complementary feeds until 24 months
Source MoH Uganda Feeding Guidelines 2010 adapted -WHO
Essential postnatal care for HIV-exposed infants and young children includes early HIV
diagnostic testing, completion of an antiretroviral prophylaxis regimen as needed, routine
newborn and infant care (immunization and growth monitoring), cotrimoxazole prophylaxis,
infant-feeding counseling and support, nutritional support, antiretroviral therapy (ART) for
children living with HIV, ART treatment monitoring, isoniazid prophylaxis when indicated,
counseling on adherence for care-givers, malaria prevention and treatment where indicated,
Integrated Management of Childhood Illness (IMCI), and diagnosis and treatment of TB and
other opportunistic infections.
In April 2008, the WHO technical reference group for paediatric HIV/ART and care revised the
recommendations for diagnostic testing, initiation of treatment, and treatment regimens for HIV
exposed and HIV-infected infants. Data emerging from recent studies, such as “Children with
HIV Early Antiretroviral Therapy” study from South Africa, which demonstrated a 76%
reduction in mortality when treatment was initiated within the first 12 weeks of life, informed the
technical reference group’s recommendations. These recommendations included virological
testing for infants with known exposure to HIV within four to six weeks of birth or at the earliest
opportunity for infants seen after that age; urgent testing for infants presenting with signs and
symptoms of HIV; initiation of ART, irrespective of clinical or immunological stage for infants
under 12 months of age; and use of clinical and immunological thresholds to identify children
over the age of 12 months who need to start ART (WHO. 2008).
Overview of Paediatric HIV & AIDS in Uganda
Of the 1.I million HIV infected individuals in Uganda, an estimated 110,000 are children. Of
these children, 50,000 are in need of life saving antiretroviral therapy (ART). Currently, only
16,000 (8.8%) of the 180,000 individuals receiving ART are children. Most of the children who
receive ART in Uganda are located in an urban setting. Studies further indicate that if Uganda
17
attained full coverage and utilization of Prevention of Parent to Child Transmission (PPTCT+) it
would save 20,000 babies born infected each year, thus approximately 2,083 per month. This
would also save on the cost of lifelong treatment for these babies in addition to reducing their
suffering and allowing them to contribute to national development.
Full coverage of PPTCT+ would contribute to reduction in the infant mortality rate, one of the
MDG indicators. For example, Uganda has an under-5 mortality rate of 130 children out of 1,000
and infant mortality rate of 82 children out of 1,000 (UNICEF, 2007).
It is against this background that the campaign to end paediatric AIDS (CEPA) in Uganda will
aim at addressing bottlenecks that lead to the above situation and help reverse the trend and save
over 20,000 children that currently get infected annually in Uganda.
Early Infant Diagnosis, Progress in East Africa
Without treatment, an infant infected with HIV in Africa has a 35 % chance of dying by its first
birthday and a 53 % chance of dying before the age of two (Newell, et al 2008); but if the baby
receives prophylactic antibiotics, such as cotrimoxazole, soon after birth and Antiretroviral
Therapy (ART) as soon as is medically indicated, it has a good chance of surviving childhood
and living a long and healthy life.
The challenge in resource-limited settings is identifying HIV-infected infants and providing early
access to this life-saving medicine. Access to Antiretroviral (ARV) drugs has improved in Kenya
in the last few years, spurred in a large part by the introduction of the President’s Emergency
Plan for AIDS Relief. But until very recently, little could be done to diagnose infants’ HIV status
in their first year of life. The standard methods of diagnosing HIV infection in adults are enzyme
linked immunoassay and western blot immunoassay tests on antibodies to the virus. Because
18
mothers pass their antibodies to their babies while still in the womb, the standard assays cannot
accurately diagnose infants until the age of 18 months, the earliest age at which the mother’s
antibodies are no longer present in the infant’s blood. By this time, many HIV-infected infants
will have died.
The test used to diagnose babies born to HIV-infected mothers in developed countries,
Polymerase Chain Reaction (PCR), tests directly for HIV DNA rather than the HIV antibody. It
requires sophisticated, expensive equipment not available in rural settings. Traditionally, the test
requires a liquid blood sample, which if taken in a rural area and transported to a testing facility,
needs to be kept refrigerated.
Recently, however, a new technology has emerged that allows PCR to be performed on small
spots of dried blood. The Dried Blood Spots (DBS) are easy to prepare in resource-limited
settings and can be stored and shipped to testing facilities without refrigeration. Infants can be
tested using PCR as early as six weeks of age. PCR testing using DBS has been proven to be as
effective as PCR using liquid blood samples, with sensitivity (percentage of results that will be
positive when HIV is present) of 100 percent, and a specificity (percentage of results that will be
negative when HIV is not present) of 99.6 %.
Several types of HIV diagnostic tests have been developed. The affordability and availability of
these tests vary by country. Diagnostic tests fall into two main categories; antibody tests (HIV
rapid tests, HIV enzyme-linked immune-sorbent assay [ELISA; also called EIA {enzyme
immunoassay}], and Western blot) and virologic tests (HIV DNA polymerase chain reaction
[PCR] assays, RNA assays, p24 antigen assays, and viral culture). Once HIV infection is
diagnosed, the stage of infection can be established clinically and immunologically. Staging the
19
severity of the patient’s disease allows health care professionals to determine the best time to
initiate treatment with antiretroviral (ARV) therapy.
Synopsis of Early Infant Diagnosis of HIV
Identifying all children infected with HIV as early as possible is an essential component to child
survival (UNICEF 2009). As countries scale-up early infant diagnosis, the processes of
identifying these children should be introduced as a package of services in order to strengthen
overall health systems. This package of services should include all necessary HIV testing as well
as infant feeding counseling and support, nutritional support and cotrimoxazole initiation. The
process of ensuring that all exposed infants and children suspected of being infected with HIV
receive an HIV test, and if infected, receive care and treatment, provides an important
opportunity for health systems to deliver comprehensive interventions for women and children.
As stated earlier, many countries are moving towards national coverage of services for PMTCT;
however, most children born to women with HIV are not being systematically monitored and
followed up during the postpartum period and are thus missing out on life-saving services.
Experience from South Africa reveals that without a systematic and structured plan that includes
early testing at 6 weeks, up to 85% of HIV-exposed infants are lost to follow-up from clinics
providing services for PMTCT by one year of age, with 75-80% already lost to follow-up at 6
months of age. Some countries have made great progress in providing access to EID. In 2007, 30
low- and middle-income countries used DBS filter paper to perform DNA PCR testing for HIV
in infants, up from 17 countries in 2005 (UNICEF 2008).
DBS has been used for transporting specimens to a centralized laboratory for HIV DNA testing
in several countries in sub-Saharan Africa (Botswana, Côte d’Ivoire, Kenya, Rwanda, South 20
Africa, Zambia and others). Even where virological testing is available through DBS, transport
time and logistics can still pose barriers to providing timely results. The first barrier is that
specimens stay too long at the clinic before they are shipped to the laboratory for analysis, and
the second is that even when results, whether positive or negative, reach the clinic, they are not
communicated in a timely manner to the patient and caregiver so that appropriate action can be
taken. The follow up of known HIV-exposed children is not only necessary to identify infants
with HIV and to ensure the timely initiation of treatment and care, but to also avoid postpartum
HIV transmission and improve overall infant health outcomes (Patton J et al, 2007).
Standard HIV antibody testing as is done with adults and older children cannot identify infected
infants in their first year of life, as it also detects maternal HIV antibodies that are transferred to
the baby during pregnancy (and subsequently decline slowly within the first year of life). More
demanding testing methods that rely on detecting HIV virus, or virological tests (HIV DNA
PCR, HIV RNA PCR, DNA), are required for diagnosing infants (UNICEF 2008). Virological
testing detects HIV DNA or RNA. HIV DNA testing can also be reliably performed on
specimens collected onto filter paper, or dried blood spots (DBS), and sent to laboratories with
capacity for testing. The use of DBS requires only a few drops of blood from an infant. Once
specimens are collected, they can be easily stored and transferred without cold-chain systems to
centralized testing locations for analysis.
The use of DBS permits blood samples to be collected in remote locations and allows countries
with a limited number of specialized laboratories to expand access to virological testing. HIV
RNA methods are also reliable and can be done on plasma and whole blood specimens and are
well suited to inpatient or sick infants where specimens using DBS are not essential.
HIV Diagnosis in Infants
21
Early diagnosis and treatment of HIV can greatly affect child survival. The high mortality rates
of infected infants underscore the importance of early diagnosis. Without interventions, up to
40% of infants born to HIV-positive mothers are infected during pregnancy, delivery, and breast-
feeding. Median infant survival time after HIV infection in infancy is just over a year. Without
treatment, one in five HIV-infected infants dies before 6 months, more than a third die by 1 year,
and more than half die before 2 years.
Antibody Testing in Infants
Diagnostic testing for HIV-1 in infants younger than 18 months differs from that for older
children, adolescents, and adults because of the presence of maternal antibodies. HIV-specific
immunoglobulins such as immunoglobulin G HIV antibodies are passively transferred to the
infant across the placenta. The mean age for clearing maternal antibody is just over 10 months,
but maternal antibodies may persist in the infant until 18 months of age (Bremer JW, et al 1996).
Because antibodies are transferred to the fetus during pregnancy, antibody tests such as rapid
tests and ELISA are positive in all newborns of HIV-infected mothers, including infants who are
not infected. Even if an infant becomes infected and begins making his or her own antibodies,
antibody tests cannot differentiate between antibodies from the mother and those from the infant.
Therefore, a positive antibody test in infancy indicates that an infant has been exposed and may
or may not be infected.
Despite these factors, HIV antibody testing is still a useful screening tool later in infancy. Up to
93% of 9-month-old HIV-uninfected infants and 95% of 12-month-old HIV-uninfected infants
will have lost their maternal antibodies. For this reason, a positive test later in infancy is more
likely to indicate HIV infection. Many national guidelines recommend first doing a rapid test in
infants aged 9 months to see if they are still antibody positive and then doing the more expensive
virologic testing on those that still have circulating antibodies.
22
This approach provides health care providers with a simple and relatively inexpensive strategy to
exclude HIV infection in many infants aged 9 months because uninfected infants are likely to be
antibody negative at that time. A rapid antibody test can also be used to definitively diagnose
HIV infection, but only in children older than 18 months. Many countries with a high HIV
prevalence have incorporated repeat rapid testing at 18 months of age for all children for
confirmation of HIV status, regardless of prior testing.
Virologic Testing in Infants
During early infancy, when maternal HIV antibodies can complicate the interpretation of
antibody tests, virologic tests can be used to determine whether the infant is HIV infected.
Virologic testing is becoming increasingly available worldwide and has an increasing role in
guiding early clinical decisions related to feeding choices, cotrimoxazole prophylaxis, and early
HIV care and treatment.
In countries in which paediatric ARV therapy and infant formula are readily available and
resources permit multiple tests, infants of HIV-positive mothers are tested at 14-21 days, 1-2
months, and 4-6 months. Some experts also recommend testing at birth to capture those infected
during pregnancy. However, this approach is not practical in resource-limited settings, where
often only one virologic test is available per child. In these settings, the DNA PCR test is often
performed at 6 weeks of age or at the earliest clinical encounter thereafter. Testing at 6 weeks
allows the provider to detect prenatal and perinatal infections and ensures that exposed infants
begin to integrate into the child health care system (e.g., for immunizations and cotrimoxazole
prophylaxis). If resources permit, a second DNA PCR test can be done 6 weeks after breast-
feeding has stopped. Because HIV exposure ends when a child is weaned from breast milk, this
second DNA PCR allows for a definitive diagnosis in these children.
23
DNA PCR tests are useful in other clinical scenarios as well, such as when an exposed infant
older than 9 months with an unknown HIV status has a positive rapid test. Most HIV-negative
infants are antibody negative by 9 months, and DNA PCR testing can offer a definitive diagnosis
in this case. Finally, even if an infant has an initial DNA PCR test that is negative, the test should
be repeated if the infant later develops signs and symptoms of HIV infection.
The Importance of Early Infant Diagnosis
Children constitute an estimated 7% of all HIV infections and account for 16% of all AIDS-
related deaths (UNAIDS, 2007). Without antiretroviral therapy (ART), up to 40% of infants
living with HIV may die before their first birthday (Taha et al 2000). The World Health
Organization (WHO) guidelines recommend that ART be initiated as early as possible in
perinatally infected infants, including those in resource-limited settings. Most HIV-exposed
infants in resource-limited settings, however, can only be diagnosed by serology at 15 to
18 months of age, when maternal antibodies have disappeared from the child’s blood.
WHO guidelines recommend HIV diagnosis of exposed infants as part of routine care from as
early as six weeks of age and it is common practice in developed countries, e.g. the HIV-1 DNA
test is maybe the “gold standard” for diagnosis of HIV-exposed infants.
This test has been successfully used for early diagnosis of infants in Asia and Africa, but its
availability has been limited to clinical research settings due to prohibitive and the need for
molecular biology laboratory infrastructure and trained personnel to perform the testing. In
search of more affordable and feasible diagnostic tools, researchers have developed alternative
virologic tests using a real-time polymerase chain reaction (PCR) technique or an ultrasensitive
p24 antigen assay, with dried blood spots (DBS) for sample collection (Creek et al,2007)
24
Diagnosing human immunodeficiency virus (HIV) in infants, children, adolescents, and adults is
challenging but important. When HIV is diagnosed early and accurately, the patient and
previously undiagnosed family members have the opportunity to access life-saving care and
treatment for HIV and related infections. When a young child is found to be HIV negative, health
care providers and family members can plan and implement actions to ensure that the child
remains negative. If a child is positive, testing allows the family to get support through post test
clubs and family support groups.
HIV normally presents with a variety of signs and symptoms. Understanding these signs allows
providers to identify potentially infected children and evaluate them appropriately. Laboratory
testing has been the standard for HIV diagnosis in resource-rich countries for many years, and
these tests are becoming cheaper and increasingly available in resource-limited settings.
25
CHAPTER THREE: METHODOLOGY
Introduction
This chapter outlines the methodology that was used in selecting the sample, instruments,
procedure, data management and analysis.
Research design
This was a cross-sectional study. A cross-sectional study design was chosen because the purpose
of this study was descriptive and in the form of a survey mainly to describe a subgroup within the
general population through examining factors that influenced access and utilization, the level of
understanding of health service providers on EID and to establish the quality of EID services
rendered to clients at the EID clinics in Lira district.
Much as cross-sectional studies are sometimes carried out to investigate associations between
risk factors and the outcome of interest, they are limited by the fact that they are carried out at
one point in time and give no indication of the sequence of events, whether exposure occurred
before, after or during a case in question.
This being so, it is impossible to infer causality; however, in this case it was chosen because a
cross- sectional study design is capable of generating data that show factors that influenced EID
services and utilisation by HIV exposed pregnant women of Lira district, indicating associations
that existed and was therefore useful in generating hypotheses for future research.
This study design was purposely chosen since it is one of the most appropriate designs in
assessing the utilization of service delivery, a common purpose for which cross-sectional studies
are best known, and which was in line with the study objectives.
26
Study Area
The study was conducted in Lira district. Lira district currently has a total projected population of
377,800 with 20% (377,800) of the general population being women of child bearing age, and
those expected to be pregnant are 18,323, with 6.7% (1228) suspected to be HIV positive (Lira
District Projected pop. 2010)
After formation of new districts, Lira remained with only the 3 health sub-districts of Erute
North, Amach and Lira municipality with a total of 21 functional health facilities comprising of
government and nongovernmental health units. 57% of the health facilities are at level 3 and
above, where the study focused. It has one regional referral hospital and three government
HCIVs which serve as a centre for EID services within their respective catchment areas.
Study population
The study population included HIV exposed breast feeding mothers; care takers of HIV exposed
children, and HIV positive pregnant mothers. The health service providers and health facility in
charges and district health officials including the HIV focal person and biostatician participated
in this study. The study considered those women who could have lived in Lira district for at least
3 months preceding their delivery. This was to help ascertain and determine the level of EID
services that have been offered to the exposed babies and mothers attending ANC clinics
especially those who have tested HIV positive.
Sampling Frame
The sampling frame operationally defined the target population from which the sample is drawn
and to which the sample data will be generalized (Carl-Erik Särndal et al, 2003). A sampling
frame therefore consisted of a list of all the eligible mothers from the randomly selected health
facilities.
27
Sample Size Determination
Kish’s formula was used to determine the sample size. The EID service uptake in Lira district
had been estimated at 11.3 % by the Lira District 2010/2011 work plan and HIV focal person.
The Kish’s formula is given by:
Where: n = Desired sample size
α = Risk expressed in Z scores at 95% confidence interval
e = Desired precision. My e in this case is 5%
Z = z value at α=5%
P = Expected prevalence of services uptake/problem
P = 11.3 % (Lira District HIV state of the implementation report 2009)
Z = 1.96
n=1.96 x1.96x 11.2 (100-11.3)= 153 participants.
5 x5 .
A total of 153 respondents participated in study.
Sampling Technique
Multistage sampling technique was used. This is a sampling technique in which the population is
divided into primary sampling units, only some of which are sampled. Each of those selected is
further subdivided into secondary sampling units, providing a hierarchical subdivision of
sampling units. At every stage, the units to be continued with are selected using simple random
procedure (Carl-Erik Särndal et al, 2003). In this study, the primary sampling units were the level
three and two facilities and health centre IVs and the regional referral hospital formed secondary
sampling unit respectively.
28
n=z2p (1-p)/e2
One health facility was randomly selected from each of the 3 health sub districts. Since health
facilities vary in access to early infant diagnosis and other health care services and in order to
avoid bias that could have resulted from differences in the sizes of the selected health facilities,
each health facility was treated as a stratum. A stratum was in this case taken to be a group of
individuals in a geographically well-defined area, living under similar conditions or having
similar characteristics. Every one out of three mothers who attended ANC was interviewed
through a tailored structured questionnaire administered by the trained research assistants.
Quality Control,
Training of Research Assistants
Eight research assistants were chosen on the recommendation of their supervisor, the district
HIV/AIDS focal person and trained in interviewing skills, correct recording, and data collection
methods for one day. The objectives of the study and methodology were fully explained to them.
The laboratory assistants served as research assistants in their respective health facilities; this was
done in order to maintain anonymity and confidentiality. The choice of laboratory assistants was
purposeful since they are knowledgeable on early infant diagnosis protocols and can easily refer
to the antenatal/PMTCT or early infant diagnosis registers for verification of details in order to
ensure reliability and consistency of the data was being collected. Above all, the researcher was
assisted at all stages by the supervisor.
Pretesting
The data collectors (Research Assistants) were trained to ensure that they administered the
questionnaires in the same way to every respondent. The questionnaires were pretested in the
nearest health facility, Ogur Health Centre IV, before real data collection to establish accuracy
and feasibility of the data tool administration.
29
Data and Results Management
Data collection tools
A questionnaire was the main instrument for data collection. It included items about socio-
demographic characteristics of the respondents, the family/mother factors and checking of the
level of understanding of the laboratory personnels on early infant diagnosis. Focus group
discussions were also used to collect information from key informants such as the district HIV
focal person, health unit in-charges and the district bio-statician.
Data Collection and Analysis
Data were collected over a period of one month, that is June –July 2011. It was then entered, val-
idated and checked. The questionnaires were administered to the women by research assistants
who were laboratory personnel and nurses working in the ART clinic. A one day training session
was conducted on interview techniques, selection criteria for study subjects, and data collection,
including translation of the questionnaires into the vernacular language. Questionnaire validity
was tested through an initial evaluation done at a PMTCT site that was not included in the sur-
vey. Quantitative and categorical data was entered and analyzed in EPI-Info 2004 (CDC)
Double entry was used and data cleaned by running frequency tables to ensure correctness and
accuracy. First descriptive analyses were carried out. Frequency distribution of variables was
also run to describe the data and cross tabulation was done to look for association between vari-
ables. A 2x2 contingency table (two rows and two columns) that displays proportions and calcu-
late a Chi-square test to compare the significance of the difference in proportions was created.
Results Dissemination
The information from the study has been written in this report for dissemination to be shared
30
with the District Health Office/DHT and health sub district in charges, MOH and other relevant
development partners in HIV/AIDS programmes, such as JCRC, Mildmay, and Baylor Uganda
and also through presentation in National Paediatric HIV conferences.
Ethical Considerations
Permission to conduct this study was granted by the IHSU research committee. The district
health office and the head of the health sub-districts were also requested for permission to
conduct this study.
Participants were assured that their views would be respected and for educational purpose only;
participation in this study was voluntary and the interviews were conducted after obtaining
written informed consent from each respondent. Participants were given a clear explanation of
the purpose, procedure and benefits of the study as well as assured of confidentiality.
The interviewers were gender sensitive; the interviews were conducted in convenient
environments proposed by the respondents to avoid inconveniences. If participants felt they did
not want to continue with the interview they were allowed to stop.
Limitation of the study
Some of the key informants never participated because they were quite busy and could not spare
time within the available schedule for data collection, some of them showed little interest in
participating in the study
Remedies to the Limitation
Through creating good rapport, potential key informants squeezed time and were interviewed.
Also some of them were convinced to be met outside working to solicit for their inputs.
31
32
CHAPTER FOUR:
Data Presentation, Analysis and Interpretation
Introduction
The purposes of the study were to identify the factors influencing the uptake of early infant
diagnosis of HIV services in Lira District with key specific content areas, to examine factors that
influence Early Infant Diagnosis services, assess the level of understanding of health service
providers and establish the quality of Early Infant Diagnosis service rendered to clients at the
service centers. This chapter presents data and findings of this study collected from 153
respondents, mainly mothers, of the children exposed to HIV, their caretakers and key players in
HIV/AIDS management. Additionally key informant interview questionnaires and knowledge
assessment for laboratory cadres were administered respectively. The respondents were asked
what age they are and are shown in the table below;
Table 1: Age ranges of the key respondents *(N=153).
Age Ranges (years) Frequency Percentage (%)13-18 13 919-24 48 3125-30 43 2830-35 23 15>35 26 17Total 153 100Source: Primary Data
Table 1 above indicates that the majority (31%) of the respondents fell within the age range of
19-24 years, while 28% were within the age range of between 25-30, and those between the age
group of 13-18 and 30-35 contributed 9 % and 15 % respectively, also 17% falling within the
age group of >35.
33
Table 2: Relationship of informant to child *(N=153)
Relationship of informant to child Frequency(n) Percentage (%)Father 21 14Mother 107 70Care taker 25 16Source: Primary Data
Table 2 above illustrates that the majority of the respondents 107 (70%) were biological mothers
of the HIV exposed children while 25 (16%) were caretakers with the least 14% being fathers.
Table 3: Marital status *(N=153)
Marital status Frequency(n) Percentage (%)Married 89 58Not Married 22 14Separated 29 19Divorced 13 9Source: Primary data
As shown above, table 3 indicates that the majority (58%) were married, followed by those not
married (19 %), while 23% of the respondents reported having been separated or divorced.
Graph 1: Occupation of mothers
Source: Primary Data
34
As reflected in Graph 1 above, the majority 91 (59%) of the mothers were housewives, while 42
(26%) reported being peasant farmers. Only 11 (8%) and 9 (7%) reported being civil servants
and doing other businesses respectively.
Graph 2: Average Monthly Family Income Levels.
Source: Primary Data
In Graph 2 above it is clearly shown that the majority of families, 67 (44%), had average monthly
income levels of less 20,000 (twenty thousand Uganda shillings) with those earning between 20-
49,000 contributing 27%. It is also shown that those earning between 51-100 and more than
100,000 are 17% and 12% respectively.
35
Graph 3: Showing Religious Affiliation.
Source: Primary Data
In Graph 3 above, the majority of the respondents were Protestants by religious affiliation,
making 40% of the sum total, while Catholics formed, 37% close to the Protestants. On the other
hand Pentecostals and Seventh Day Adventists contributed 20 and 3 % respectively, while none
of the respondents reported being a Moslem.
Table 4: Level of Education *(N=153)
Level of Education Frequency (n) Percentage (%)None 23 15Primary 74 48Secondary 33 22Institution 19 12University 4 3 Source: Primary Data.
As seen in Table 4 above, the majority of the respondents attained primary and secondary
education levels, contributing 48 % and 22 % respectively; meanwhile a significant portion
(15%) never had formal education with only 3% reaching University level.
36
Pie Chart 1: Showing Distance from the Health Facility
Source: Primary Data
Pie Chart 1 above clearly show that most people (43%), traveled a distance between 5-8 km to
get to the health facility; meanwhile those who had to move longer distances than 8 kms to get to
the health centre contributed 34 %, with only 23% travelling a distance of less than 5 kms to get
to the health centre.
Table 5: No of ANC visits during pregnancy *(N=137)
Number of ANC visits during pregnancy Frequency (n) Percentage (%)1-2 79 583 27 204 31 23
Source: Primary Data
As shown in table 5 above the majority (58%) of the mothers attended ANC only between 1-2
times during their pregnancy, while 20% of the mothers attended ANC 3 times during their
pregnancy. Those who attended ANC 4 times were 23%.
37
Graph 4:Showing ANC Attendance During Pregnancy
Source: Primary Data.
Graph 4 above illustrates that out 153 respondents, the majority 90% attended ANC; however
10% did not attend ANC
38
Graph 5: Showing Testing and Results during Pregnancy.
Source: Primary Data.
In the graph above, out of the 137 respondents who attended ANC, 85% reported to have been
tested for HIV and 15% did not undergo routine counseling and testing for HIV. On the other
hand, of those who were tested, 81% reported having received their results the same day while
19% did not get their results the same day
39
Pie Chart 2: Showing ARV prophylaxis for PMTCT * N= (130)
As illustrated in the above pie chart, out of N=130 respondents, the majority (66%) of the
mothers received ARV prophylaxis during ANC. Of note, up to 33% missed out on the ARV
prophylaxis during pregnancy.
40
Graph 6: Showing place of delivery *(N=134).
In the line graph above, respondents were asked where they delivered; the majority of the
mothers (61%) reported having delivered in a health centre. Those who delivered at home were
29%, while 8% of the mothers delivered in the hands of traditional birth attendants.
Table 6: Showing the uptake of ARV prophylaxis for PMTCT.
Mother received ARVs soon after delivery
Frequency (n) Percentage (%)
Yes 71 60No 48 40Total 119 100Baby received ARV syrup after delivery
Frequency (n) Percentage (%)
Yes 75 63No 44 37Total 119 100
As demonstrated in table 6 above, 60% of the mothers were able to access ARVs for PMTCT
soon after delivery; however, 40% did not. For babies, the majority (63%) had ARV syrups while
up to 37% missed out.
41
Table 7: Duration taken on ARV Prophylaxis*(N=70)*: only those who received ARVs soon after delivery.
Duration babies took ARV prophylaxis Frequency (n)
Percentage
Once 15 217 days 34 492 weeks 13 191 month 8 11
As shown in Table 6, only 70 babies had ARV prophylaxis soon after delivery and the majority
(49%) had the syrup for seven days while 21% had the ARV prophylaxis only once; however
19% and 11% had the syrup for two weeks and one month respectively.
Graph 6: DBS samples taken first Time
Graph 6 above indicates that out of the 153 respondents interviewed, 63% had the DBS samples
for their babies taken for the first time. Meanwhile up to 37.3% had the DBS of their children not
taken for a DNA-PCR test.
42
Pie Chart 5: DBS Sample taken for the second time
Pie Chart 5, above, indicates that only 40 % of the children exposed to HIV had their sample
taken for a DNA-PCR for the second time, whilst the majority (60%) never had their samples
taken for the second time.
Table 8: Duration for DBS results *(N=96)
Duration for DBS results Frequency(n) Percentage (%)< 1 month 19 201-2 months 41 43> 2 months 36 37Source: Primary data.
Table 7, above, shows that 43% of results took up to a period of between 30-60 days to be
received by mothers and/or caretakers; while 37% of the results took more than 2 months with
only 19% taking less than 1 month. On average therefore it is important to note that the
turnaround time for DBS results fell within the period of 1-2 months.
43
Table 9: Health education during ANC visits*(N=137)
Health Education during ANC Frequency (n) Percentage (%)Exclusive breast feeding for 6 months 70 51Exclusive breast feeding for 3 months 30 22Not breast feeding at all 13 9None 24 18
As shown in table 8 above, the majority (51% and 22%) received health education on exclusive
breast feeding for 6 and 3 months respectively, while 9% were told not to breast feed at all with
up to 18% never getting any health education at all.
Table 10: Checking the understanding of laboratory cadres on early infant diagnosis
Ranking Frequency(n) Percentage (%)
Very good Understanding 5 38Good Understanding 3 23Fair 4 31Poor 1 8For purpose of this study Very good understanding=answering all the questions correctly, Good understanding= answering 70% of the questions correctly, fair understanding=answering at least 50% of the questions correctly. Poor understanding=answering only 30% of the questions correctly.
As shown in table 8 above, only 38% of the laboratory personnel had very good understanding
for early infant diagnosis services with 23% having good understanding; however, a greater
percentage (31% and 8%) had fair and poor knowledge on EID respectively.
Key Informant Interviews
44
A tailored questionnaire with specific questions guide was administered to 6 key informants who
comprised the health unit and health sub-district in charges, the district HIV focal person and the
district bio-statistician. When asked about their opinion on the early infant diagnosis services in
the district, proposing strengths and weaknesses and possible suggestions for improvement, the
majority felt that early infant diagnosis is a poorly accessed service in the district due to quite a
number of challenges such as:
Frequent stock outs;
In the panel interview with key informants, 100% of the respondents agreed that there have been
frequent stock outs of supplies for paediatric patients and PMTCT in the district. This to them was
due mainly to the pull and push system the MoH is currently using in the supply chain and
management system which is associated with a lot of bureaucracy.
Unreliable means of sending DBS to the Regional Centre of Excellence
During the discussion with key informants, the study found that the postal system of transportation
of DBS from the service centres to the regional centre of excellence in Gulu has not worked well;
usually, there is delay at the discretion of the postal operators. When they are picked to be taken to
Gulu, they may work on it quickly but feedback takes a long period of time since there is no
effective feedback and follow-up mechanism put in place to eliminate the delay.
The health managers thought that it would be ideal to have at least one operating DNA-PCR
diagnostic centre in the sub region to effectively offer appropriate and timely paediatric services
for the districts in the Lango sub-region; this would help sort out the issue of unavailability of a
PCR laboratory within the Lango sub-region districts.
45
“The issue of stock outs is a common phenomenon in the primary health care settings; a lot is still desired to cross over. I propose that short courses on drug logistic management be given priority because partly poor record keeping by the store keepers play a big role in this problem, imagine!, even during technical support supervision, we normally find expired drugs at the lower facility stores” (Biostatician, Lira).
Staff capacity to handle paediatric and EID services in the district.
Regarding the capacity of staff to handle EID services, most informants reported a low capacity of
staff, especially clinicians, laboratory personnel and nurses in paediatric HIV care and
management; fewer than 50% of the health workers in the district are trained on comprehensive
paediatric HIV care and management. Only 30% of the laboratory personnel had been trained on
early infant diagnosis protocols. Most of the health managers therefore recommended capacity
building and recruitment of the staff as a priority.
It was also reported that frequent transfers of key staff already trained in specialized areas like
comprehensive paediatric HIV management and care contributed in the knowledge gap because
transfers never matched the levels of training and staff placement, particularly those staff trained
in HIV management. For instance, a staff member who is supposed to work competently at the
health centre IV is transferred to a health centre III or II where some specific services may not be
available.
“The EID services uptake in the district is generally poor, supplies are always irregular leading to frequent stock outs, and only about 30% of the laboratory personnel and 10% of the clinicians had ever been trained on EID respectively. You know, over time there has also been unreliable means of sending the DBS to the regional centre of excellence and receiving results back. I propose that there should be a well designed means of delivering the DBS and receiving the results timely so that the clinicians could decide when to effectively start the child on ARVs, much as clinical staging does help, but DBS confirmation is more accurate and reliable for client management. We should also look at building the capacity of laboratory personnels and clinicians on EID as well as raising awareness on the importance of EID and if possible ensure adequate and constant supply of EID materials” (District HIV Focal Person, Lira).
Important also to note was that less than 20% of the HIV exposed children had their DBS taken for
the second time to Gulu. Also of note was that on the average it takes about 2-3 months for the
46
DBS results to come back, with an undetermined percentage getting lost. However, the district has
been doing technical support supervision of the lower heath units only once a year despite the fact
that the work plan stipulates a quarterly support supervision; the district has managed to supply all
the units with new guidelines on paediatric HIV/AIDS (EID).
Loss to Follow Up
Generally it was found in this study that only 63% of the HIV exposed children had their DBS
taken for a DNA-PCR test, while significantly up to 37% were lost to follow up. The informants
also reported that loss to follow up is common among the HIV positive mothers attending ANC;
those who eventually deliver at home or in the hands of TBA are normally not tracked, and this
has always been associated with poor follow up and lack of effective home based care.
Some of the reasons for loss to follow up among others included sudden unnoticed death of the
exposed children, failure of partners to disclose status so the mother fears taking the child for care,
family community stigma, belief that the child is cured through supernatural means, transport costs
and transfer to other treatment clinics.
Available data indicated that in Lira district 62% of the babies are lost to follow up because the
mothers either deliver at home or in the hands of TBA without supervision of the qualified health
worker (Omoo, 2009). A prospective study in Kenya also reported a 30% loss to follow up among
the HIV exposed children (http://journals.Iww.com.jaids/Fulltext/2011/070101) This belongs in
the references, cite the author here.
Finally it was also noted that for the past year, the district has had irregular and poor health
coordination HIV/Cluster partner meetings, which normally act as a coordination mechanism to
brain storm on best practices and lessons learnt for future health planning.
47
48
CHAPTER FIVE: DISCUSSIONS
Introduction
Early infant diagnosis is a vital intervention which allows countries to provide essential health
services for all children and to continue to make progress in keeping children alive and healthy.
Even though it is widely known that early initiation of ART in children with HIV saves lives, and
that children respond as well to ART in low and middle income countries as in high-income
countries, very few children under the age of one are currently being diagnosed and subsequently
receiving treatment (UNICEF, 2009).
This chapter will basically focus on the variables that influenced the uptake of Early Infant
Diagnosis services in Lira district, looking at the socio-demographic characteristics of the
respondents, family/mother factors, the understanding of the laboratory personnel involved in
offering EID services and information shared out by the key informants. Related studies in this
subject area will be considered for comparison and finally conclusions and recommendations for
future research undertakings will be made.
Socio Demographic Characteristics
In this study, the majority of the respondents, 31%, fell within the age bracket of 19-24 years,
those within the age group of between 25-30 were 28%. The fact that the majority of respondents
in this study were adolescents is not surprising: this age group is normally experiencing a stage
of self-identity, they are sexually hyperactive and like experimenting with everything they come
across, and thus are prone to getting HIV/AIDS. A study done in Italy about age-related risk
behaviors among the 19-24 year olds found that the respondents were more sexually active and
that 94% had experienced sexual intercourse, with an average of 4 partners; about 6% had had
sex with prostitutes (Cardini et al 1998).
49
Similar studies done in Rakai and South Africa found an increased risk of incident HIV and preg-
nancy as a strong predictor of infection among 15-24 year olds. Significantly also, those between
the age group of 13-18 and 30-35 contributed 9% and 15 % respectively with those above 35
years forming 26%. These observations are in keeping with a related report (UBOS, 2005) which
indicated that the median age of the Uganda’s population is 14.9 years, implying that nearly half
of the population is aged approximately between 13-24 years as it is estimated that the proportion
of the population aged 15-24 is 20.1%.
Similarly, the rapid assessment of trends and drivers of the HIV epidemic and effectiveness of
prevention interventions in Uganda’s antenatal surveillance system (Asingwire et al, 2006) indi-
cated that HIV infections were beginning to rise in the age group 15-19 years and peaking in the
20 -24 age group. This explains the fact that the majority of the Ugandan population are young
people with the majority (85%) living in the rural area (UBOS, 2005); therefore coupled with the
increasing trend of HIV incidence among the 20-24 year olds as noted above, it is not surprising
to note that the majority of the respondents of this study were young HIV positive mothers aged
between 19-24 years.
It is also clear in traditional culture that many girls get married at an early age in rural Uganda as
many also drop out of school at a young age; this has been made worse by the prolonged North-
ern Ugandan war which forced many people from their home into protected IDP camps. This
finding is also in line with a related study done on causes of early marriage and school dropout in
Northern Uganda (Nakanyike etal, 2003), which indicated that the perceived causes of dropout
and early marriages are complex and tend to vary for boys and girls. However marriage-related
factors, war and income-generating attraction seem to be the biggest causes of dropout for both
boys and girls.
50
Observing the relationship to the child sex, it is also noted that the majority of the respondents
(70%) were biological mothers of the HIV exposed children, with a few (16% and 14%) being
caretakers and biological fathers respectively; this agrees with similar research findings which in-
dicated men normally participate less compared to women when it comes to handling family
health matters (Nuwagaba et al, 2007). However, the findings show that the majority (58%) of
the participants were married, while almost on equal proportion (14% and 19% respectively)
were not married and separated with the least 9% being divorced; this not surprising as our tradi-
tional society still treasures marriage as something very important as shown by the majority of
the respondents being Christians.
On the other hand, in the study it is reflected that most mothers (59%) were housewives, while
26% reported being peasant farmers. It is also true that the majority of the mothers who reported
being housewives were peasant farmers; this follows a trend that up to over 60% of the Ugandan
economy is still dependent on subsistence agriculture, hence a bigger portion of the communities
in Uganda including the Lango sub region engages in subsistence agriculture as a primary source
of living; no wonder the study indicated that only 8% and7% reported being civil servants and
engaged in other businesses respectively. A related study done in Rakai on socio-economic deter-
minants of HIV serostatus also reported the majority of the respondents being peasant farmers
and housewives and that household wealth status and occupation of mothers was significantly as-
sociated with HIV status (Kirungi et al 1997).
Average monthly income levels
The study discovered that a significant number of most families (67, 44%) had an average
monthly income of less than twenty thousand (20,000) UGX with those earning between 20-49
thousand contributing 27%. The study also showed that those earning between 51-100,000 and
51
more than 100,000 cumulatively formed only 29%. This alludes to the fact that many
respondents who participated in this study were young and less economically empowered, since
the majority 74 (48%) had stopped at primary level education with only as few as 3% reaching
the university, with a bigger portion of 15% having not undergone formal education.
The findings also agree with the national demographic and socio-economic profile (NSP 2007/8-
2011/12), which states that Uganda is a low income country with a per capita GDP of
$300/annum with 31% of its people living below the poverty line. A similar study done in
Zimbabwe (Perez et al, 2006) also found that failure to access HIV counseling and testing
services including PMTCT (early infant diagnosis) was associated with lower income levels
among women and their partners who were frequently not employed. It could be that these
women are less able to make decisions on their own as they are less empowered economically.
However, it is important to note that in this study there were no significant differences between
those who took their children for DBS and income level of less than 50,000 Uganda shillings as
compared to those respondents with income level between 51-100 and more than a hundred
thousand shillings.
This could be attributed to the fact that the majority of the respondents, though having less in-
come, understood about the free care and support services offered at the health centres and that
stigma is reducing as opposed to the high income earners who may not be willing to be seen at
the public HIV/AIDS centers and may use private health centres.
On religious affiliation, most respondents (40%) were Protestants followed closely by Catholics
37%. On the other hand Pentecostals and Seventh Day Adventists contributed 20% and 3 % re-
spectively, while none of the respondents reported being Moslem. These findings are however
not surprising given the fact that majority of the Lira Population is Christians with Anglicans
52
forming the majority followed by Catholics; it agrees with the Lira district health work plan
2009/10, which reported a socio-demographic profile of 47% of the population being Protestants.
The observations also reflect the history of missionary settlement in Northern Uganda where the
missionary society (Protestants) followed immediately after Catholics, explaining the fact the
majority of the respondents were affiliated to the main stream churches.
Level of Education
Regarding level of education, the majority of the respondents (48%) attained primary education
level, closely followed by those who stopped at secondary education who contributed 22%;
meanwhile a significant portion (15%) never had formal education with only 3% reaching Uni-
versity level. Similarly those who never had formal education (P<0.002) also had the DBS of
their children taken; this study however disagrees with a similar study done in Zimbabwe ((Perez
et al, 2006), which reported that there was positive association between the level of education
and testing, as less educated women most often failed to appreciate the importance of maternal
and child health or had less access to these services, as well as to health education and promotion
in general.
Distance from the Health Facility
In this study most respondents (43%) normally traveled a distance of between 5-8 km to get to
the available services, similar to those who move longer than 8 km (34%) to get to the health
facility. A significant percentage (23%), however, moves a distance of less than 5 km to get to
the health facility. With linear regression, there was a strong association between those who
traveled less than 5 km and between 5-8 km (p<0.002 and at P=0.07); many respondents who
traveled more than 8 km to get to the health facility never visited the health centre again after
delivery Therefore there was a negative association between distance and accessing ANC care
services.
53
This could explain the reason why the uptake of PMTCT and more especially paediatric HIV
coverage, such as early infant diagnosis in Lira, is low at less than 12 % (Lira District health
work plan 2010/2011). Since a significant portion of the respondents walked longer distances to
get access to services, many therefore tend to opt out; a similar report also indicated a low
coverage of paediatric services uptake in the country, as low as 8%, due to disparities in distance
for available HIV/AIDS related services (Kalinda, 2010).
This calls for a tailored approach in designing community HIV programs which aims at taking
the services nearer to the communities. There should be meaningful involvement and
participation of the PHAs through family support groups; this will go a long way in stigma
reduction hence giving a motivated community to rise up and combat the incidence of HIV.
Antenatal Visits
Findings clearly showed that the majority (79, 58%) of the mothers attended ANC only between
1-2 times during their pregnancy, while (27, 20%) of the mothers attended ANC at least 3 times
during their pregnancy with those attending 4 times making 31 (23%). This finding agrees with a
similar survey (Ssozi, 2009) which reported that the proportion of expectant mothers who make
the fourth ANC visit in Lira was only 54%. At p<0.001, there was a strong association between
those having average monthly incomes more than 100,000 Uganda shillings attending the ANC
at least 4 times as recommended; it also found that up to 90% of women generally ANC at least
once. This means that most women have access to ANC; however, too few women receive
skilled care during delivery. PMTCT programs seem to have taken root in most regions in the
country.
54
These findings are in keeping with a related report which indicated that in 2006, 94% of women
utilised antenatal care (ANC) services at least once during pregnancy, more than 75% did so after
the 3rd month of pregnancy and that only 42% received care by a skilled attendant during
delivery.
Regarding ARV prophylaxis for PMTCT, the study found that the majority (33 %) of the HIV
positive mothers had ARV prophylaxis for PMTCT while pregnant and 17 % of the HIV positive
mothers never accessed ARV prophylaxis during pregnancy; this is far too low as compared to
the 2009 national estimate which indicated 53% HIV-positive pregnant women receiving ARVs
for PMTCT and 28% of HIV-exposed infants. At p<0.002, the majority of the HIV positive
mothers (61%) delivered from a health centre; those who delivered at home and in the hands of
traditional birth attendants though with less significance (p=0.004), contributed 37%.
This finding indicates that PMTCT service uptake and utilisation in the district is still low. A
similar study done in Kawempe Division, Kampala, (Were, 2010) also found low uptake of test-
ing and other PMTCT services. The study also agrees with the fact that disparities in skilled care
utilisation during delivery are still pronounced with 76% utilisation by the richest women and
80% by urban women with only 28% by the poorest women and 37% by rural women (UDHS,
2006).
The 2010 national PMTCT guidelines recommend initiation of ARVs earlier during pregnancy
from 14 weeks of gestation, and if the mother is breast feeding, ARV prophylaxis for either the
baby or mother should continue till the end of breast feeding. The baby therefore should be on
single dose niverapine from birth until one week after breast feeding has stopped. As table 6
shows, none of the babies had a proper dosing protocol as per the new guidelines. Up to 21% had
single dose niverapine syrup only once after delivery; this showed a significant knowledge gap in
55
the health service providers; training and mentorship should be taken seriously in order to im-
prove quality in the management of HIV exposed babies.
The disparity here could also be associated with lack of dissemination of new policy guidelines
down to the lower health facilities and irregular supplies of paediatric HIV regimens as often re-
ported in many studies and findings and health facility assessment reports by the district HIV fo-
cal person.
“The EID services uptake in the district is generally poor, supplies are always irregular
leading to frequent stock outs, and only about 30% of the laboratory personnel and 10%
of the clinicians has ever been trained on EID respectively” District HIV focal person-
Lira.
In respect to routine counseling and testing during pregnancy, out of the 137 respondents who
attended ANC, 117 (85%) were counseled and tested for HIV; meanwhile 20 (15%) did not
undergo routine counseling and testing. These missed opportunities could be associated with
inadequate human resources as always seen in the health facilities and frequent stock outs for the
PMTCT supplies. It is also important to note that at p<0.001 there was a strong association
between failure to test during pregnancy and the number of ANC visits.
A related study done in Zimbabwe (Perez et al, 2006) also found that attending ANC less than 4
times, p=0.003, was associated with not having been tested for HIV; on the other hand some
could have declined to test for fear of knowing their HIV status and the need to have their
partner’s consent. This is also confirmed by the Uganda PMTCT fact sheet, 2010, which
indicated that the percentage of women attending at least 4 ANC visits overall was 47%, with the
majority of women being in the urban rather than rural areas (60% and 45 % respectively)
.
56
Dry Blood Samples
The findings in this study indicate that out of the 153 respondents who were interviewed, 96
(62.7%) had the samples of their babies taken for the first time, while 37% had the DBS of their
children not taken for early infant diagnosis; this could be associated with frequent EID stock
outs in the district and low skills among the health staff to handle every HIV exposed child, and
low capacity of the health units to do follow guidelines, hence resulting in loss to follow up as is
also revealed in this study. Up to 20% of the HIV positive mothers delivered at home and in the
hands of traditional birth attendants, chances are high that they never had opportunity to be told
about the availability of EID services.
These findings closely relate to a similar study done in Cameroon on the feasibility of early
infant diagnosis of HIV in resource-limited settings, which reported that factors associated with
incomplete EID among others included HIV diagnosis during pregnancy and absence of
prophylaxis for PMTCT, which significantly and independently were associated with a higher
risk of incomplete EID process. A similar study in South Africa also revealed that without a sys-
tematic and structured plan that includes early testing at 6 weeks, up to 85% of HIV-exposed in-
fants are lost to follow-up from clinics providing services for PMTCT by one year of age, with
75-80% already lost to follow-up at 6 months of age (Ahoua et al, 2010).
The majority, however, missed out on the opportunity of having their children tested for the
second time as required by the PMTCT guidelines; the study indicated that only 40 % of the chil-
dren exposed to HIV had their sample taken for DNA-PCR for the second time while the major-
ity (60%) never had their samples taken for the second time. However, the median age at first
testing these children was 9 months (IQR 6-14.5); this disagrees with guidelines, which stipulate
taking DBS the sample at least by 6 weeks, and in 2010 only 42 % of the exposed babies aged 0-
3 months had their samples taken for PCR (Elyanu, 2010). However, this finding is in keeping
57
with a study done in Cameroon which reported a median age of 10 weeks. In a related survey
also carried out a cross 3 regional referral hospitals of Masaka, Jinja and Lira the average age at
first DBS was 6.8 months.
Duration for DBS Results
In this study, up to 43% of results took a period of between 1-2 months to be received by the
mothers and caretakers including the health workers; this means the clinicians have to rely on
clinical staging other than the laboratory reports which is very critical in paediatric HIV care. It
also implies that the number of infants who would die before their first birthday will rise as not
many health workers are trained on Paediatric HIV care, and the few clinicians who can make
accurate judgments using clinical staging are also few.
“Without treatment, one in five HIV-infected infants die before 6 months, more than a third die by 1 year, and more than half die before 2 years” (EID Working paper UNICEF, 2010)
The study also found that up to 37% took more than 2 months with only 19% taking less than 1
month. On average, results took between 1-2 months. This finding shows a small improvement in
the turnaround time as compared to the national average of about 69 days.
The study agrees with a survey done in Jinja referral hospital which found that the number of
days between sample collection and result arrival at site varied, with those waiting between 10-
30 days and 31-50 days contributing 59% and 52 % respectively; and with long turnaround times
fewer caregivers return for their results due to frustration with the delay. Even in the best case
the percent returning remained low (Kiyaga 2009).
This indicates a slight improvement in the turnaround time; however, the report also put those
waiting for over 70 days at 38%, a figure equaling the national average. This could be attributed
58
to the support given by the different stakeholders in HIV programming such as NUMAT, Baylor,
UNICEF and other agencies that have played a pivotal role in the scaling up of paediatric HIV
care and support services.
Health education during ANC Visits
Regarding health education on breast feeding options in the context of HIV, out of 137, i.e. the
number who attended ANC, the majority (51%) had health education on exclusive breast feeding
for at least six months, and 30 (22%) received health education on exclusive breast feeding for 3
months. Those who were told never to breast feed at all formed 9% and those who never got
health education at all were up to 18 %. These findings show that there is a knowledge gap
among the caregivers in regards to new MoH –WHO adapted guidelines on PMTCT. Most
health workers are still using the old guidelines which state that infants confirmed HIV-positive
should breastfeed exclusively for 6 months and complementary feed until 24 months, (Infant
feeding guideline (2006-2009)).
However, in the current guidelines on HIV and infant feeding (2010), mothers are now strongly
recommended to exclusively breastfeed until 6 months of age, and continue breastfeeding while
introducing complementary feeds until 12 months of age. When mothers breastfeed for 12
months and with ARV prophylaxis, risk of HIV transmission is reduced because ARV prophy-
laxis is provided throughout the breastfeeding period.
“The 2010 guidelines have great potential to improve the mother’s own health and to reduce mother-to-child HIV transmission risk to 5% or lower in a breast-feeding population, from a background transmission risk of 35%; in the absence of any interventions and with continued breastfeeding”. Source (New National PMTCT Guidelines, 2010).
In this study therefore, the percentage that never had breast feeding education could be the pro-
portion who never returned after their first ANC visits.
Checking the understanding of laboratory cadres on early infant diagnosis
59
In assessing the understanding of laboratory personnel engaged in the EID processes, a total of 15
were interviewed and for the purpose of this study ranking was done thus: Very good
understanding was taken to mean answering all the questions correctly, good understanding =
answering 70% of the questions correctly, fair understanding meant answering at least 50% of the
questions correctly, poor understanding=answering only 30% of the questions correctly.
Generally the study found that only 38% (n=15) of the laboratory personnel had very good
understanding for early infant diagnosis services with 23% having good understanding; however a
significant percentage (31% and 8%) had fair and poor knowledge on EID respectively . This
denotes that there is less skilled human resource to manage the scale up paediatric HIV care and
treatment; no wonder comprehensive paediatric HIV care uptake in the country only stands at 8%
(Kalinda 2011).
Key Informant interviews
Key players in the HIV/AIDS Care and prevention services in the district such as the HIV focal
person, biostatistician and health sub district in charges were asked generally to get an informed
position in regards to early infant diagnosis services uptake in the district. When asked about their
opinion regarding EID uptake in the district, the majority (100%) thought that early infant
diagnosis services were poorly accessed since even though most of the health facilities are offering
the services, due to frequent stock outs of EID supplies, most HIV exposed children miss out at the
early age thus there is a high loss to follow up.
“Other barriers to access to services were identified as chronic stock-outs of medicines and commodities, limited family planning options and severe side-effects of available op-tions, misconceptions and negative attitudes, lack of male involvement, unacceptable rules and schedules, and long distances to health to health centres, among others” (Ssozi, 2009).
60
On human resource skills, less than 50% of the health workers (laboratory and clinicians) have
undergone training in paediatric and early infant diagnosis. This means the services rendered to
HIV exposed children are of low quality; all the informants suggested a comprehensive training
process be run for the health workers to increase knowledge in the management of paediatric HIV.
Several studies done elsewhere (Bwirire et al, 2008, Kalinda 2011) also reported poor coverage of
paediatric services.
Regarding key challenges facing the EID services, key factors such as distance to the centre of
excellence, poor staff capacity, unreliable means of sending and receiving the DBS results, which
according to them makes the turnaround time (TAT) 2-3 months, and less funding for technical
support supervision were mentioned.
As far as data management timely and appropriate reporting is concerned, 70% of the reports were
received in time; however, the 30% gap is still significant enough to lower the services uptake as
the study depicted.
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CHAPTER SIX: CONCLUSIONS AND RECOMMENDATIONS
This section presents conclusions and recommendations on some of the critical issues emerging
from this study that set out to investigate uptake of Early Infant Diagnosis services in Lira district
through assessing the level of understanding of health service providers and ascertaining the
quality of Early Infant Diagnosis services rendered to clients at the service centers.
Conclusions
The turnaround time (TAT) for receiving DNA-PCR results from the regional centre of
excellence in Gulu for early infant diagnosis is still unacceptably high, as most results (43 %)
took up to a period of between 30-60 days, while up to 37% took a period of more than 60 days
for the mothers and caretakers, including the health workers, to receive the results.
This significantly influenced the quality of paediatric HIV care and treatment in the district as
clinicians had to rely on WHO clinical staging other than the laboratory reports. Even though
there is no available data on HIV infant related deaths in Lira district, it is also important to note
that the number of infants who died due to HIV related illnesses in the district could have been
high as few clinicians in the district are trained on comprehensive paediatric HIV care, thus
making accurate judgment using clinical staging incomplete.
None the less, the finding showed a slight improvement in the TAT as compared to the national
average of 69 days. This could be attributed to the support given by the different stake holders in
HIV programming such as NUMAT, Baylor, UNICEF and other agencies that has played a
pivotal role in the scaling up of paediatric HIV care and support services.
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Most families (71%) had an average monthly income of less than fifty thousand (50,000 UGX)
and were less economically empowered; the majority (74, 48%) stopped at primary level
education with only 3% reaching the university. 15% never had formal education. Much as EID
services are free, there was therefore a strong association between family income levels and
education, and uptake of EID as up to 37% had the DBS of their children not taken for early
infant diagnosis.
Regarding distance from the health facility, similarly in this study it was found that there was a
strong positive association. Many respondents who travelled more than 8 km to get to the health
facility never visited the health centre again after delivery; therefore there was a negative
association between distance and accessing ANC care services. Partly this could explained the
reason why the uptake of paediatric HIV care services in the district is as low as less than 12 %.
On ANC, generally 90% of the mothers at least accessed ANC PMTCT services; this was
creditable, however, the majority (79, 58%) of the mothers at least attended ANC 1-2 times only
during their pregnancy, while 53% of the mothers attended ANC between 3-4 times during their
pregnancy. At p<0.001 there was a strong association between those having average monthly
incomes more than 100,000 Uganda shillings attending the ANC at least 4 times as
recommended. Therefore the level of income had implications on EID uptake as only those with
a fair income level at least managed to attend ANC 3-4 times.
There was an serious issue regarding logistics and supplies management for PMTC and EID. In a
key informant interview it was concluded that the uptake of EID services in the district was
generally poor as supplies are always irregular, leading to frequent stock outs. Findings also
showed that only about 30% of the laboratory personnel and 10% of the clinicians had ever been
trained on EID; overall there was poor understanding of the health workers on early infant
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diagnosis as up to 39% had poor knowledge on the services. Thus the study concluded there is
less skilled human resource to manage the scale up paediatric HIV care and treatment in the
district.
In conclusion, the findings in this report demonstrated that turnaround time for DNA PCR results,
inadequate and irregular supplies for early infant diagnosis (EID), distance to the health facility,
poor health workers skills, and lack of awareness on the existing EID among others influenced the
uptake of early infant diagnosis services in Lira. Strengthening paediatric HIV care and treatment
through effective and efficient early diagnosis of HIV infants should be prioritised as early infant
diagnosis (EID) of HIV is a key-point for the implementation of early HAART, associated with
lower mortality in HIV-infected infants.
This study therefore sets a benchmark to come up with recommendations to the policy makers to
improve on the paediatric HIV care services in Uganda.
Recommendations
1. The district should operationalise an integrated health promotion model where
community HIV/AIDS awareness campaigns feature. Paediatric HIV prevention care and
treatment should form the fabric of the message always disseminated to the community as
it was shown in this study that some people never knew about the availability of early
infant diagnosis services at the health facilities. This will help raise awareness on the
importance of early infant diagnosis
2. The skilled human resources necessary to comprehensively handle paediatric HIV/AIDS
care in the district is still lacking. The Ministry of Health should prioritise training of
health workers (clinicians) in paediatric HIV care and management.
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3. The logistics and supplies management system should be regionalised to reduce distance
and bureaucracy which tends to delay the all process of procurement and delivery; this
will ensure adequate and constant supply of paediatric related materials especially those
necessary for early infant diagnosis.
4. Develop effective and user friendly systems for the timely and reliable use of laboratory
results for DBS or CD4 collected and transported to the central processing laboratory.
The promptness and reliability of the systems should be evaluated at each point in the
chain of events; delays at any point in the system can result in significant increases in
morbidity and mortality. Appropriate means of action to track positive results and the
ensuing follow up action should be developed to ensure clinicians and care givers get
feedback early to allow initiation into chronic care.
5. More centres should be accredited to handle DBS. At the moment DBS sample taking
remains only at health centre III. MoH should consider scaling up DBS services to lower
level health facilities in the districts and where possible further decentralise the DNA
PCR centres of excellence to regional referral hospitals.
6. Ministry of Health should consider scaling up Dry Blood Sample taking to the village
levels by supporting the laboratory technicians to conduct home visits through family
support groups (PHAs) and VHTs to avoid loss to follow up.
7. MoH should strengthen technical support supervision for the paediatric HIV care in the
lower facilities to ensure that services being provided are of quality. The most updated
treatment guidelines and laboratory best practice models should be disseminated to the
health facilities to improve quality of services.
8. An electronic database and communication (dissemination system) of results which are
password protected should be established to link the results back to the health facilities
and speed up return of results.
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9. This was a cross sectional study and explorative in nature. It is important to undertake a
more comprehensive research of the same problems in other districts especially to
evaluate the current EID processes and interventions to ascertain the possibility of
strategy shift.
66
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Implementation Plan & Budget SummaryNo Activity Responsible
personBudget summary(UGX)
Time frame
1 Identification & Training of research assistants
District HIV Focal PersonAguze George
480000 May 2011
2 Questionnaires Field testing Aguze George 120,000 May –June 2011
3 Data collection Aguze George 600,000 July 20114 Data entry and analysis Statistician 250,000 July 20115 Report Writing Aguze George 425,000.0 August-
October 20116 University Research Fee Aguze George 502,000.0 October 20117 Draft correction, Final
submission and defenceAguze George - October 2011
Grand Total 2377000
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QUESTIONNAIRE
Date------------------------------------
Serial No. ---------------------------------
Preamble:This questionnaire is intended to investigate the uptake of Early Infant Diagnosis services in Lira district and identify influencing factors in order to come up with a more relevant and friendly services for early infant diagnosis. Your participation in this study is completely voluntary. All your responses will be treated with utmost respect, and remember there are no “right” or “wrong” answers as we want information based on your experiences, observations and feelings.
PART ONE:Socio demographic characteristics:
1. Age in years. Please tick in the appropriate box
2. Relationship to child Sex : Father Mother Care taker
3. Marital status : Married Not Married Separated Divorced
4. Occupation of Mother : Housewife Civil servant Peasant Farmer Others-----------------------------------------------
5. Occupation of Spouse : Civil servant
Peasant farmer Others---------------------------------------------------
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19-2413-18
25-30 30-35
>35
6. Average monthly family income level in UGX in ‘000 (Tick) <20 20-49
51-100 >100
7. Religion :
Protestant
Catholic
Pentecostal
Muslim
Seventh Day Adventist
Others-------------------------------------------------------------------
8. Level of EducationNone
Primary
Secondary
Institution
University
PART TWO: Family/Mother factors1. How far is the health centre from your home?(Please give estimate)
<5kms
Between 5-8 kms
>8 kms
2. How many times have you been pregnant? --------------------------
3. While pregnant, have you ever gone for ANC? Yes No
4. If yes, how many times during your pregnancy?
1-2 times
3 times
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4 times
5. Did you ever get tested for HIV during ANC?
If yes, did you receive your results same day? Yes No
6. Were you given ARV for prophylaxis if positive? Yes No
7. Where did you deliver from? Home Health centre TBA
8. Did you receive ARVs for PMTCT prophylaxis soon after delivery? Yes No
9. Did your baby also receive syrup of ARVs?
If yes, how many times: once 7 days for 2 weeks 1 month
10. Did you visit the health centre again after delivery? (inquire about postnatal care 8 weeks
after delivery)
11. Was the blood sample (DBS) for your child taken for testing? Yes No
If Yes, Test results received after how long? <1 month 1-2 months >2 months
If no, how long ago was the DBs taken <1 month 1- 2months > 2months
12. How old was your child when the DBS was taken? < 6weeks
> 6 weeks but < 12 months
>12 months
13. DBS of the child taken for the second time Yes No
If yes, how old was the child--------------------------
13. During ANC were you given health education on breast feeding options?
If yes, which option are you using now?
Exclusive breast feeding for 6 months
Exclusive breast feeding for 3 months
Not breast feeding at all
None
14. How were you being treated by the health worker?
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PART THREE
Checking the Understanding Of Laboratory/EID Service Providers.
1. Have you been trained in EID? Yes No
If yes which site is the DBS sample collected at > 6 months?
Big toe
Index Finger
Heal
2. How do you pack the DBS samples?
Place patient’s blood spots together
Place each patient’s blood spots into a glassine envelope
3 . In your opinion, what shows that DBS is invalid?
Poorly filled circles
Well labeled samples
Properly dried blood spots
4. What should you do when the results come back negative?
Counsel the mother about the negative test
Counsel the mother about positive test
Continue cotrimoxazole
5. What should you do when the results come back positive?
Counsel the mother about positive test result and availability of treatment
Follow up the child regularly
Stop breast feeding
How long does it take to get back the DBS result?--------------------------
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KEY INFORMANT INTERVIEW –GUIDE
Preamble
My name is Aguze George, a student of Master of Public Health at IHSU Kampala. I am
currently doing my research work on factors influencing the uptake of early infant diagnosis
of HIV services in Lira district. Since you hold a key position in the district I would like to
discuss with you about the ongoing EID services in the district, the information can help find
better means of improving the quality of EID services in the district. Please feel free and give
honest feed back during this interview. All answers will be handled with utmost confidentiality.
A. What is your title in the district
B. What is your opinion about Early Infant diagnosis services in the district? Probing strength
and weaknesses, what areas of improvement would you suggest?
C. How many health facilities are providing this service in your district?
D. Are there some very key challenges facing the implementation of early infant diagnosis ser-
vices in the district that you can share?
E. What are the problems with logistic and supplies for EID services in the district?
F. What proportion of Laboratory personnel and clinicians has ever undergone EID training in
Lira district?
G. I understand EID through DBS for DNA-PCR is supposed to be done more than once accord-
ing WHO guidelines. In Lira district, could you give a proportion of those HIV exposed chil-
dren who had their DBS taken more than once for DNA-PCR.
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H. How long on average does it take for the results of DBS to come back from the Regional cen-
tre of excellence in Gulu?
I. How often do you carry out your support supervision for the lower health facilities providing
EID services?
J. In terms of data management, timely and appropriate reporting by site, what would be your
comment?
K. Has the district health office been able to supply health facilities with new guidelines on pae-
diatric AIDS (EID)?
L. Is there any district health coordination/HIV cluster meeting held by partners?
M. How often do you meet and do you implement the changes
End of Questions Thank You.
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