RETENTION IN CARE OF HIV EXPOSED INFANTS ENROLLED IN CARE:

A CASE STUDY OF INFANTS ENROLLED FOR EID CARE IN

BUWAMA HC III MPIGI DISTRICT

BY

LILLIAN NAKANYIKE

2011-BSCPH-PT-017

AN UNDERGRADUATE RESEARCH REPORT SUBMITTED TO THE INSTITUTE

OF HEALTH POLICY AND MANAGEMENT IN PARTIAL FULFILLMENT

OF THE REQUIREMENTS FOR THE AWARD OF A BACHELORS

DEGREE OF PUBLIC HEALTH OF INTERNATIONAL

HEALTH SCIENCES UNIVERSITY

DECEMBER 2014

i DECLARATION

I hereby declare that this research report entitled “Factors affecting retention of HIV exposed infants enrolled in EID program in Buwama HC III in Buwama sub-county Mpigi district” has never been presented or submitted in any other University for an award or publication.

This work is entirely and originally my own citation and back up of information has otherwise been acknowledged.

Signature: ______Date: ___/___/____

Lillian Nakanyike

Researcher

i APPROVAL

This is to certify that this research report has been submitted for examination with my approval as the University student’s supervisor.

Signature: ______Date: ___/___/____

Mrs. Ondia Miriam

Supervisor

ii DEDICATION

This dissertation is dedicated to my mother Nazziwa Betty and lovely daughter Gabriella

Kisakye and to my lovely friends from the 2011- PT Public health class.

iii ACKNOWLEDGEMENT

First and above all I praise God almighty for providing me this opportunity and granting me the capability to proceed successfully. I would not have been able to complete my dissertation without guidance of my supervisor, and the help from friends and more so the profound understanding daughter Gabriella Kisakye who always knelt before God and prayed that I would finish my homework!

I would like to express my deepest gratitude to my mother Ms. Betty Nazziwa who has tirelessly supported me in every way and at every step. I also owe a vote of thanks to my supervisor Mrs. Ondia Miriam for giving her whole and agreed to supervise me despite of her many academic and professional commitments. I owe my thanks for her excellent guidance, caring, patience and provided me with excellent environment for doing this research whilst allowing me the room to work on my own.

I would like to thank my friend Alfred Mwarimu who was always willing to help and giving his best technical suggestions. Many thanks to health care workers and the Buwama VHT team who helped me in data collection.

I am so proud of my fellow classmates who inspired me, laughed with me, fought with me to the very end BRAVO to all of you, I hope and believe that with God on our side the we will make a difference.

iv TABLE OF CONTENTS DECLARATION ...... i

APPROVAL ...... ii

DEDICATION ...... iii

ACKNOWLEDGEMENT ...... iv

TABLE OF CONTENTS ...... v

LIST OF TABLES ...... ix

LIST OF FIGURES ...... x

ABBREVIATIONS ...... xi

OPERATIONAL DEFINITIONS ...... xii

ABSTRACT...... xiii

CHAPTER ONE: INTRODUCTION...... 1

1.0 Introduction ...... 1

1.1 Background to the study ...... 1

1.2 Statement of the problem ...... 3

1.3 General objectives ...... 4

1.3.1 Specific objectives ...... 4

1.4 General research questions ...... 4

1.5 Significance of the study ...... 5

1.6 Conceptual framework ...... 6

1.6.1 Description of the conceptual framework ...... 7

CHAPTER TWO: LITERATURE REVIEW ...... 8

2.0 Introduction ...... 8

v 2. 1 An overview of Early HIV testing (EID) in infants ...... 8

2.2 Retention of exposed infants enrolled in care for EID ...... 9

2.3 The maternal factors influencing the retention of HIV exposed infants enrolled in the

Early Infant Diagnosis program ...... 11

2.4 The influence of Socio-economic factors on the retention of HIV exposed infants enrolled in the Early Infant Diagnosis ...... 14

2.5 The role of healthy system factors on the retention of HIV exposed infants enrolled in the

Early Infant Diagnosis program ...... 17

CHAPTER THREE: METHODOLOGY ...... 20

3.0 Introduction ...... 20

3.1 Study design ...... 20

3.2 Study area ...... 20

3.3 Study population ...... 21

3.4 Study Variables ...... 21

3.5 Sources of data ...... 22

3.6 Sample size determination ...... 23

3.7 Sampling procedure ...... 23

3.8 Data collection tools ...... 24

3.9 Data collection procedure ...... 24

3.10 Data analysis procedure ...... 24

3.11 Quality control issues ...... 25

3.12 Ethical considerations ...... 25

3.13 Limitations for the study ...... 26

3.14 Plan for dissemination ...... 26

vi CHAPTER FOUR: PRESENTATION OF RESULTS...... 28

4.0 Introduction ...... 28

4.1 General characteristics of the respondents ...... 28

4.2 Retention rate for Early Infant Diagnosis ...... 30

4.3 Maternal factors influencing retention of HIV exposed infants enrolled in EID ...... 31

4.4 Socio-economic factors influencing retention of exposed infants enrolled in EID ...... 36

4.5 Healthy system factors on the retention of HIV exposed infants enrolled in the EID ...... 40

4.6 Observations ...... 43

CHAPTER FIVE: DISCUSSION ...... 47

5.0 Introduction ...... 47

5.1 General characteristics of the respondents and retention of exposed infants ...... 47

5.2 Retention rate of the exposed infants enrolled in care for EID services...... 48

5.3 Maternal factors influencing retention of exposed infants enrolled in care for EID ...... 49

5.4 Socio-economic factors on the retention of HIV exposed infants enrolled in the Early

Infant Diagnosis program ...... 50

5.5 Healthy system factors on the retention of HIV exposed infants enrolled in the Early

Infant Diagnosis program ...... 52

CHAPTER SIX: CONCLUSIONS AND RECOMMENDATIONS ...... 54

6.0 Conclusions and recommendation ...... 54

6.1 Conclusions ...... 54

6.1.1 Retention rate of exposed infants enrolled in care for EID services in Buwama HC III 54

6.1.2 What are the maternal factors influencing retention of HIV exposed infants enrolled in the Early Infant Diagnosis program in Buwama sub-county Mpigi district? ...... 54

vii 6.1.3 What are the Socio-economic factors influencing retention of HIV exposed infants enrolled in the Early Infant Diagnosis program in Buwama sub-county Mpigi district ...... 55

6.2 Recommendations ...... 56

REFERENCES ...... 58

APPENDICES ...... 61

APPENDIX I: CONSENT FORM ...... 61

APPENDIX II: BUDGET FOR CONDUCTING THE RESEARCH ...... 67

APPENDIX III: LETTER OF RECOMMENDATION ...... 68

APPENDIX IV AUTHORIZATION LETTER ...... 69

viii LIST OF TABLES

Table 1: General characteristics of all respondents ...... 29

Table 2: Health system factors affecting retention in EID ...... 40

ix LIST OF FIGURES

Figure 1: The retention rates of the exposed infants enrolled in the EID program ...... 30

Figure 2: Parity of mother ...... 31

Figure 3: Awareness of sero status and ART initiation ...... 32

Figure 4:Adherence to ART among the Mothers ...... 32

Figure 5: Places of delivery and Niverapine syrup initiation ...... 33

Figure 6:Babies’ sero status after the 1st PCR and EID attendance ...... 34

Figure 7: Other reasons for dropping out ...... 34

Figure 8: Breastfeeding status and reasons advanced ...... 35

Figure 9: Babies’ immunization status and reasons advanced ...... 35

Figure 10: Sites for immunization ...... 36

Figure 11: Employment status mothers/caretakers ...... 36

Figure 12: Affordability of transport to the Health Facility ...... 37

Figure 13: Marital status of mothers/care takers ...... 38

Figure 14: Disclosure rates of sero status of the mothers/caretakers ...... 38

Figure 15: Family support patterns ...... 39

x ABBREVIATIONS

AIDS………………………….. Acquired immunodeficiency syndrome

ANC ………………………….. Antenatal clinic

ART …………………………. Antiretroviral therapy

ARV …………………………. Antiretroviral

DBS ………………………….. Dried blood spot

DNA …………………………...Deoxyribonucleic acid

EID……………………………. Early infant Diagnosis

HCW…………………………... Health care worker

HEI ……………………………. HIV-exposed infant

HIV ……………………………. Human immunodeficiency virus

LTFU…………………………… Lost To Follow Up

MTCT …………………………. Mother to child transmission

PCR …………………………….Polymerase chain reaction

PMTCT ………………………... Prevention of mother to child HIV transmission

xi OPERATIONAL DEFINITIONS

Early Infant Diagnosis;

The process of ensuring that all exposed infants suspected of being infected with HIV receive an HIV test, and if infected, receive care and treatment

Infant;

Baby who is in the age range of 0-2years

Retention;

The ability for the enrolled exposed infant to actively be in care until 18 months of age

Vertical Transmission;

Transmission HIV from mother to the unborn or breastfeeding Child

Chronic Care;

Care given to a positive infant for life in the ART clinic

xii ABSTRACT

Vertical transmission of HIV from mother to child is the main route by which childhood HIV infection is acquired. Transmission can occur either in utero (while the child is still in the womb), during delivery or during breastfeeding. Without early initiation of ART, HIV infected infants suffer from rapid immunological deterioration, disease progression and high mortality. However, early treatment of infants using Anti-Retroviral Therapy significantly reduces infant mortality from HIV infection. In this regard therefore, a successful Early

Infant Diagnosis (EID) program is a causal part of efforts to reduce the burden of HIV disease

Objective: The overall objective was to establish factors influencing retention of HIV exposed infants enrolled in the Early Infant Diagnosis program in Buwama sub-county,

Mpigi district. The specific objectives included: (1) to determine the retention rate of the HIV exposed infants enrolled for Early Infant Diagnosis in Buwama sub-county; (2) to identify the maternal factors influencing the retention of HIV exposed infants enrolled in the Early

Infant Diagnosis program in Buwama sub-county; (3) to assess the Socio-economic factors influencing retention of HIV exposed infants enrolled in the Early Infant Diagnosis program in Buwama sub-county; (4) to examine the healthy system factors affecting the retention of

HIV exposed infants enrolled in the Early Infant Diagnosis program in Buwama sub-county,

Mpigi district

Methodology: A cross-sectional descriptive design and a semi-structured interview questionnaire were used to collect data from 384 women living within the community of

Buwama sub-county. A univaliate analysis was then done. The distributions of the different variables was then described in terms of frequencies and percentages, and presented in form of tables and figures.

xiii Results; Majority of the respondents ranged in the age brackets of 15-20 and 26-30 and the exposed infants who had stopped coming to the facility were in the age bracket of 6-

18months.From the different factors that were assessed to be influencing retention of care, majority of the respondents seemed to have dropped out of the program because of failure to disclose to their HIV status to the immediate people they live with (83%) among those who had not disclosed, Lack of transport (68%), failure to receive their babies’ results (55%) among those who had not received the results and stigma (43%). Other contributing factors were; long waiting time at the facility 72% and poor health workers’ attitude towards the mothers (71%).

Conclusion: Programs focused on preventing vertical transmission need to increase their commitment to interventions that addresses retention in care of exposed infants and broaden their measure of success to reflect infants who test negative at the end of the exposure period.

This paper argues that EID is a key strategy to retaining HIV-exposed infants through the end of the exposure period, as it provides an opportunity to offer early clinical care and continuous follow up. It is imperative that maternal and child survival programs become sensitized not only to the urgency of early identification of HIV in infants and but also their retention in care.

Recommendations: The district should consider a lift up of the MCH building and partition the building into rooms that can promote privacy as the mothers receive the services since many opt not to come back for services because of lack of privacy.

The ministry of health needs to consider the issue of Human Resource for Health to cover the gap of understaffing at the facility. This will also bridge the challenge of long waiting at the facility.

xiv CHAPTER ONE

INTRODUCTION

1.0 Introduction

This chapter provides a background about of the study which sets the basis for assessing the factors influencing retention of exposed infants enrolled in care for EID services in Buwama

HC III Buwama sub-county Mpigi district. In addition the chapter also presents the statement of the problem, research objectives and research questions, significance of the study and the conceptual framework with its description.

1.1 Background to the study

Vertical transmission of HIV from mother to child is the main route by which childhood HIV infection is acquired. Transmission can occur either in utero (while the child is still in the womb), during delivery or during breastfeeding. Without early initiation of ART, HIV infected infants suffer from rapid immunological deterioration, disease progression and high mortality. However, early treatment of infants using Anti-Retroviral Therapy significantly reduces infant mortality from HIV infection. In this regard, therefore a successful Early

Infant Diagnosis (EID) program is a causal part of efforts to reduce the burden of HIV disease (Ciampa et, al. 2012).

Babies who are born to HIV-infected women who may be infected but are of unknown HIV status are commonly referred to as HIV-exposed babies.

Early infant diagnosis of HIV infection is essential to identify infected children and to prioritize them for early anti-retroviral therapy. The diagnosis of HIV in infants begins with screening of the mother for HIV during pregnancy, labour and breastfeeding. Once the mother has been confirmed to be HIV positive, the baby will be referred to as an exposed

1 infant and the ideal time to perform virology assay to the exposed baby is at 4 to 6 weeks of age because more than 95% of infants infected in utero or in the peripartum period will have positive results by this time. For breastfeeding infants, testing is complicated by the ongoing risk of HIV transmission throughout the breastfeeding period. For this reason, the baby is monitored monthly for the first 6 months and then will follow a two months appointment till the 18th month of life.

Ruling out HIV infection requires a negative serologic test at least 6 weeks after the cessation of breastfeeding. In resource-limited settings, dried bloodspots on filter paper are the preferred method of specimen collection for virologic testing due to reliability and convenience of transporting specimens across large distances. Systems should be put in place to ensure rapid delivery of test results to the mother/infant pair. The third test (rapid test) is done at 18 months of age. Any infant with an initial positive virologic test result should receive antiretroviral therapy without delay, while repeat virologic testing is performed to confirm the diagnosis (Violari A, et al,).

In Uganda EID is done by polymerase chain reaction (PCR) analysis of HIV DNA samples in a centralized laboratory at the central public health laboratories (CPHL) in Kampala. EID services are offered at specialized clinic which are incorporated within the public health system. The services are offered in health centre III and above in all districts.

The HIV policies globally recommend HIV testing for all infants beginning at 6 weeks of age or at first contact thereafter (Chatterjee. et al., 2011). However, despite the importance of

EID, program performance in many resource limited settings has been disappointing and factors such as patient attrition remains one of the important barriers to the success of EID services (Braum, et al., 2011).In developed countries success of preventive interventions for mother-to-child transmission (MTCT) of HIV has been credited for transmission rates of

2 <2% (UNAIDS Report 2013). Key to these dramatic decreases in MTCT rates has been attributed to the availability of Anti-Retroviral Therapy.

Though alarming, more than 90% of the world’s HIV- infected children are in sub-Saharan

Africa. Studies have shown that infants fail to access EID services due to high attrition rates.

Attrition from EID program leads them to miss the opportunity for prompt diagnosis, early initiation of treatment of HIV. In sub Saharan Africa, an estimate of 34% of infants are lost to follow up and by the 3rd month of life, a further 45% are lost after the HIV testing (Chatterjee et al., 2011).

This disparity in outcomes has not been due to a lack of effective medications or tools but service utilization caused by attrition from EID by the mother infant pairs. (HIV/AIDS

Uganda country progress report 2014). Because of the high attrition, the exposed infants are deprived of other HIV services that are associated with testing e.g. Cotrimoxazole prophylaxis, breast feeding counseling, testing for late transmission of HIV among others

(Ciampa et, al., 2012). Furthermore, such infants are more likely going to miss out being registered for follow up.

1.2 Statement of the problem

Though the majority HIV-exposed (HIV-E) infants born to HIV-infected women will not become infected, most are born in resource-limited settings and therefore exposed to increased mortality and morbidity common for children in such regions. In addition, a limited but growing body of evidence suggests that HIV exposure itself may contribute to poor health outcomes as well as a host of unique psychosocial and economic challenges that can have a profound effect on overall wellbeing and ultimate outcomes (Nandisa S. et al., 2013).

However, most children born to women with HIV are not being systematically monitored and

3 followed up during the postpartum period and are thus missing out on life-saving services.

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 for the entire family (Kalembo

W et al., 2012).

However, in spite of the MoH interventions in place, infants are lost to follow-up at every step of the EID cascade with some studies showing that up to 85% of infants are lost to follow up by the first year of age (MoH Dec 2013).

This study therefore, seeks to establish the factors affecting retention of the HIV exposed infants who are enrolled into care in Buwama Sub County in Mpigi district.

1.3 General objectives

To establish factors influencing retention of HIV exposed infants enrolled in the Early Infant

Diagnosis program in Buwama sub-county, Mpigi district?

1.3.1 Specific objectives

1. To determine the retention rate of the HIV exposed infants enrolled for Early Infant

Diagnosis in Buwama sub-county Mpigi district

2. To identify the maternal factors influencing the retention of HIV exposed infants

enrolled in the Early Infant Diagnosis program in Buwama sub-county, Mpigi district

3. To assess the Socio-economic factors influencing retention of HIV exposed infants

enrolled in the Early Infant Diagnosis program in Buwama sub-county, Mpigi district

4. To examine the healthy system factors affecting the retention of HIV exposed infants

enrolled in the Early Infant Diagnosis program in Buwama sub-county, Mpigi district

1.4 General research questions

What are the factors influencing retention of HIV exposed infants enrolled in the Early Infant

Diagnosis program in Buwama sub-county Mpigi district?

4 1.4.1 Specific Questions

1. What is the retention rate of HIV exposed infants enrolled for Early Infant Diagnosis

in Buwama sub-county Mpigi district?

2. What are the maternal factors influencing retention of HIV exposed infants enrolled in

the Early Infant Diagnosis program in Buwama sub-county Mpigi district?

3. What are the Socio-economic factors influencing retention of HIV exposed infants

enrolled in the Early Infant Diagnosis program in Buwama sub-county Mpigi district?

4. What are the healthy system factors affecting retention of HIV exposed infants

enrolled in the Early Infant Diagnosis program in Buwama sub-county Mpigi district?

1.5 Significance of the study

The findings of this study were important in informing the district of the unsatisfied need for proper service delivery in management and follow up of Exposed infants born to HIV positive mothers and a guide in formulating strategies for effective follow up and management of the mother baby pairs.

The study will be generally valuable to the researchers, Government ministries like the

Ministry of health, Ministry of Education, Tutors and Lectures in Nursing schools and

Universities, Health facilities that offer EID services at all levels as elaborated below;

Understanding of factors influencing the uptake of the EID services in Uganda will provide a useful guide in formulating appropriate interventions/measures to improve on the service uptake. The information will provide literature for future researchers and will be in partial fulfillment of the Bachelor Degree in Public health of International Health Science

University.

5 1.6 Conceptual framework

Maternal factors

Age Religion

Education level Retention of HIV exposed

Parity infants enrolled in care for In ANC attendance EID services Facility delivered from i.e. EID knowledge 1st PCR at one and a half months (6 weeks)

2nd PCR at 1year

Health system factors Rapid test at 18 months

Accessibility Waiting time Location of facility

Availability Health personnel Socio-economic factors Drugs availability Enough equipment Education level

Distribution of health facilities Disclosure of HIV status

in the district Economic status Acceptability Marital status Culturally Family Support

Communication at different Cost of travel

service stations

6 1.6.1 Description of the conceptual framework

The conceptual framework clearly indicates some of the factors that are anticipated to have an influence on retention of exposed infant enrolled in Early Infant Diagnosis services in

Buwama Sub-county. Among the variables include Retention exposed infants enrolled in care as the dependent variable; the independent variables include; Individual factors, Support and

Health system factors.

7 CHAPTER TWO

LITERATURE REVIEW

2.0 Introduction

This chapter presents the various findings done by other scholars on the early infant diagnosis program under the themes; overview of early infant Diagnosis in infants and young children,

2) Retention of exposed infants enrolled in care for EID services, 3) Maternal factors influencing retention of the exposed infants enrolled in care and 4) Health systems factors affecting retention of exposed infants enrolled in care.

2. 1 An overview of Early HIV testing (EID) in infants

Early Infant Diagnosis of HIV infection provides an opportunity for identification of HIV

Exposed Infants (HEI), DBS collection, immunization, growth monitoring and development, provision of Co-trimaxazole prophylaxis to prevent opportunistic infections (OI), proper feeding options, final HIV status determination and referral to care and treatment of HIV infected infants and young children.

Availability and proper implementation of EID provides opportunity to determine HIV infection, availability of drugs for opportunistic infections and early initiation of ART for

HIV infected infants and young children.

Meyer-Rath G, IAS 2010 stated that the early initiation of ART in HIV infected children by 3 months of age reduces morbidity and mortality by 76% and 75% respectively. Access to PCR technique for EID of HIV in most resource-constrained countries has been made possible through donor funds in collaboration with different governments including Uganda. The initial global focus for HIV epidemic was focused on the coverage of PMTCT and scale up of

8 HIV and AIDS care and treatment programs (HIV research group, February6, 2006; Denver, co) which led to the late diagnosis of HIV in young children at 18 months of age.

EID of HIV offers benefits to infants by determining the HIV status early and provide an opportunity for early initiation for of ART which would ultimately improve the quality of life through reduction of HIV related morbidity and mortality. EID of HIV among the babies born to HIV positive mothers also assesses the effectiveness of PMTCT interventions and improves the morale of the health workers involved in rendering these services once HIV infections have been detected among exposed infants (Ciaranello et al,2011).

Once the final HIV outcome has been determined, the infant will then be discontinued from opportunistic infection prophylaxis with reduction of resistance and costs related to medication. Through EID of HIV, parents also receive informed infant feeding options to further prevention of HIV negative infants from mixed feeding and also opportunities to family planning services.

2.2 Retention of exposed infants enrolled in care for EID

Despite its recent availability in resources-limited setting EID service uptake has faced many challenges contributed by numerous factors. Only 6% of HIV-exposed infants in developing countries received HIV testing within two months of birth in 2009 (WHO/UNAIDS/UNICEF

,2010). If there is no efficient follow up and plan for early testing at 6 weeks, about 85% of

HIV-exposed infants are lost (UNICEF, 2010). Lost to follow up of HIV-exposed infants during the EID cascade is contributed by poor integration of the PMTCT services within the

Postnatal services offered after delivery, lack of coordination between reproductive and child health clinic, outpatients, inpatients wards and maternity wards which has led to fewer

9 infants’ identification and testing. Some other clinics focus on infants of known maternal

HIV status while missing the opportunity to test those whose mother’s statuses are unknown.

A study done to evaluate the impact of PMTCT in sub-Saharan Africa revealed that the lost to follow up rates among the mother-baby pairs enrolled for care ranged from 19% to 89.4% and this was attributed to health system factors, fear of HIV test, stigma and discrimination, home deliveries and socioeconomic factors.

A study done in Kenya on the dynamics and constraints of EID revealed that there were several weaknesses in the implementation of the EID program. There were frequent late entry and high drop out among the infants enrolling for care and EID which was attributed to lack of knowledge and understanding of EID by service providers and consequently, care givers.

The study showed that the service providers were inadequately prepared to effectively implement EID despite having undergone PMTCT training (Amin S et al, .2011)

A study done in Uganda revealed that most of the women who dropped out of the program were mostly the ones who tested late in pregnancy who never got a chance to cope with their

HIV status, those who never delivered in a health setting meaning they never got a chance for more counseling and Niverapine initiation for the baby, the challenge of retention was also reported to have been more common in the rural areas because women depend on their spouses for transport. The other challenge was babies who have tested negative and are considered health by the parents, they never see the need to return to the health facility especially if the mother has not disclosed yet (Nuwagaba H et al, .2007).

There are a number of advantages tagged to the follow-up in the prevention of mother to child transmission of HIV through the EID program. This will ensure administration of a

10 short-course ART to those children that are enrolled for EID (Niverapine syrup) and their mothers (ART), provision of continuous post-test counseling and support for exclusive breastfeeding for six months, continuous follow-ups of mother-child pairs through routine health services including provision of cotrimoxazole prophylaxis for opportunistic infections for both the baby and the mother. (WHO/UNAIDS recommendations” 2001). This is also enhanced by the referral to community-based psychosocial support and home-based care services.

The WHO recommends a national adaptation for eMTCT which include ARV prophylaxis to the mother and infant to be able to provide an ideal opportunity (even though this has not been fully utilized as yet by all nations) to improve retention of the mother-infant pair within care, ensuring that all HIV-exposed infants receive a final definitive diagnosis at 18 months and HIV-infected infants are initiated ART immediately. Initiation of lifelong ART to all pregnant and breastfeeding HIV positive women (Option B+) provides a similar and potentially and even greater opportunity.

2.3 The maternal factors influencing the retention of HIV exposed infants enrolled in the Early Infant Diagnosis program

There are almost comparable challenges that are greatly encountered by mothers’ worldwide leading to the high rates of drop out from the program. Remarkably, these have been experienced in all organizations that are implementing these services of Early Infant

Diagnosis.

In developing countries, a number of them can be prevented but since these are self-induced, they are almost impossible to eliminate them. Some of those challenges include but not limited to only developed countries but also to their counter parts the developing ones.

11 Today most of the developed and developing countries are facing challenges of Substance abuse, mental illness, and HIV-related stigma which present barriers to prenatal care in women living with HIV. Increasing accessibility to prenatal care services is crucial to sustain and maximize the decline in perinatal HIV infections. When a mother is using drugs, a lot is happening and very limited attention will be given about the life of the infant. She will constantly forget to take care of herself. This will be through not seeking for health care services. After birth, the continuous use of these drugs will severely affect the child to be retained in the early infant diagnosis program because the mother seems not to be bothered at all.

Cumulative losses in sub-Saharan Africa’s prevention of vertical transmission programmes are very high. Many mothers deliver without ever attending ANC or having the opportunity for HIV testing. Up to 28% who enroll in ANC are lost prior to delivery, while 8 of every 10 are lost at six months postpartum. This loss to follow-up (LTFU) occurs at many steps along the cascade, including when pregnant women do not return for test results between ANC and delivery; when pregnant women return for results and test positive but do not begin prophylaxis to prevent vertical transmission; and when the infant is not brought in for diagnosis and care post delivery

(Marcos Y et al. Journal of the International AIDS Society 2012,)

In the same region, a study done to assess the impact of loss to follow up on the implementation of the PMTCT program among the pregnant and breastfeeding mothers revealed that maternal education enhances communication between the mother and healthcare providers and also improves retention of provided information, leading to better implementation of recommended interventions. Education also empowers the woman to have autonomy in making important decisions without relying on other people. It is therefore

12 important for policy makers in sub-Saharan countries to formulate policies that promote education of girls and women (Kalembo W et al,. 2012)

A study in South Africa found out that clients had inadequate information on early infant diagnosis services, given that they could not recall the information communicated to them during counseling. Mothers only made use of counseling services once during their first visit and not on subsequent visits irrespective of HIV-1 status, suggesting limited rapport between providers and clients. Experiences of those with HIV-1 positive results confirmed privacy and confidentiality were inadequate, as other clients knew the HIV-1 results of their colleagues. Findings indicated that 68% of the participants received less than 5 minutes of posttest counseling, 21% had 5–10 minutes, and only 10.7% had more than 10 minutes of posttest counseling. This was believed to have severe effect to the mothers. Those that did not remember the main reasons why they were seeking for the EID services were found to be dropping out. The mothers who did not want to associate with others because they fear to be stigmatizes through associating with those that are HIV positive also felt out of place and therefore continuity with the program becoming very difficult for them.

H.Nuwagaba-Biribonwaha, R.T.Mayon-White, P. Okong, L. M. Carpenter, 2007, study done in Uganda indicated that mothers attending ANC services declined to have their HIV tests done thus posing a big challenge with early identification of HIV positive mothers in order to deliver the PMTCT services effectively. Furthermore, the study also revealed that some women only attended ANC once and vanished without a trace and others did not deliver from the health facilities where they could easily access the PMCT services and therefore missed their ART and the babies’ prophylaxis treatment.

13 This was difficulty was faced more in the rural areas especially with women who depended on their spouses for transport to the health centers.

2.4 The influence of Socio-economic factors on the retention of HIV exposed infants enrolled in the Early Infant Diagnosis

These are factors that have heavily affected early infant diagnosis in developing countries.

Mothers find it a program to travel from home to the health facilities seeking for health care services because they have numerous demanding problems. For any family to be stable a number of factors are tabled and in poor countries, the mothers are found to be playing the greatest role in solving these problems than their counter parts the husbands who spend most of their time in nonproductive work.

Poor HIV disclosure among partners have been linked to underutilization of EID services since awareness of the infant’s exposure status may not be known leading to missing the opportunity of extending these services to the young ones. (Ciaranello et al, 2011). If the mother fails to disclose to the partner or the relatives she lives with, follow up of these babies becomes a challenge because mothers now become reluctant to take their babies to the health facility for a test for fear of answering unnecessary question from the people she lives with.

. A study in Zambia revealed that women feared the reactions of a partner or husband. They feared losing a husband and believed that a woman’s infection and pregnancy would spark off a chain of deaths after delivery with the baby, herself and then her husband’s dying.

Women also feared the response of their families, believing that they will be ignored, isolated, and openly disgraced and blamed. The continuous seeking for health care services in the name of the program EID would result into all the above and therefore the running away from the program to avoid suspicion looked ideal. (V. Bond, E. Chase, and P. Aggleton,

14 “Stigma, HIV/AIDS and prevention of mother-to-child transmission in Zambia,” Evaluation and Program Planning, vol. 25, no. 4, pp. 347–356, 2002)

The studies that were conducted in South Africa and Zambia revealed that Understanding the socioeconomic factors that affect the ability of communities to comply with PMTCT program will assist resource-poor countries in devising strategies to achieve follow up of HIV exposed infant. (T. M. Painter, K. L. Diaby, D. M. Matia et al., “Sociodemographic factors associated with participation by HIV-1-positive pregnant women in an intervention to prevent mother- to-child transmission of HIV in Côte d'Ivoire,”, 2005)

Poverty is a relative reason but this affects individuals’ differently. For those that are poor in a developing country will stand on this factor and they fail to get basics that will be used to help them access health services. Developing countries are characterized of having distant health facilities and this will affect the poor mother to travel for long distances continuously.

The woman will give up during the second month of the program because of the lack of money to be used as transport.

The other pressing problems in the family such as lack of food for other children will also affect the mother since she will have to prioritize the buying of food for other children to feed on that taking the young one for the medical attention yet the child is not so much demanding. This results into various post ponding of the program until the time of failure to adhere to the program is reached.

Some health facilities that still keep the system of user fees were also found to be one of the reasons that have affected these mothers to continuously seek for the early infant diagnosis

15 program in developing countries. The lack of money by families has left them with no solution but to abscond from seeking for the health care services. Whenever the mother visits the health facility she has to pay for these services that are offered hence to give up.

A meta-analysis conducted in sub-Saharan Africa reported that rates and barriers to disclosure of HIV results for their children and the mothers themselves varied from 16.7% to

86% and that between 3.5% and 14.6% of women reported experiencing a violent reaction from a partner following disclosure. This directly affected the mother from not coming back to the health facility for the early infant diagnosis clinic to eliminate the suspicion that might break up with in the family. Despite the continuous counseling, some partners to these women have deliberately failed to turn up for counseling and therefore or safety, the mothers keep the children at home failing them to adhere to the program. (A. Medley, C. Garcia-

Moreno, S. McGill, and S. Maman 2004)

In Uganda, the story is not different; A study conducted in Uganda about the challenges faced by health workers in implementing the PMTCT program revealed that women feel isolated when they are pooled out of the general pool because the services are integrated within the usual MCH services, they get questioned by their friends as to why they are treated differently or in a special way, or when a woman takes the HIV positive result at home to disclose to the man, he will not want to take responsibility therefore will deny that those results are not true and refuse to take responsibility. Furthermore; culturally, when a woman gives birth, she goes to the mother in law or vice versa, chances that the mother in law will start dictating what to do and not to do are high and if the mother had not disclosed there will be a challenge with continuity with the program (H. Nuwagaba, P. Okong et al, 2007).

16 2.5 The role of healthy system factors on the retention of HIV exposed infants enrolled in the Early Infant Diagnosis program

Health care system should deliver essential support in the EID cascade. A well systematic follow up system of mother baby pair including the immunization cards have been put in place to identify the baby’s HIV status. Availability of national guidelines, trained health care workers, timely and effective support supervision, with the right tools in place will ensure that HIV exposed or infected babies are identified and enrolled in care. (Cherutich et al 2008)

L. D. Bwirire, M. Fitzgerald, R. Zachariah et al. 2008 put it clearly basing on the findings that were found in a study conducted in Malawi where postnatal mothers thought that they were inadequately prepared to undergo continuous HIV-1 testing with their children. Positive mothers also thought that EID had no benefit for them since ART was seen as not a part of

PMTCT program. Mothers also complained of delays in getting service at early infant diagnosis clinics.

According to the study conducted in Ivory Coast. It revealed that mothers and their children were afraid of being scolded at by health staff and that health workers were not attending to them when they had come for follow-up visits. (T. M. Painter, K. L. Diaby, D. M. Matia et al.2004). This affected the program as health workers were being looked at as a problem. In case a mother skipped a day that she was meant to have attended the clinic, this would result into continuous outing from the program due to fearing to be attacked.

A study that was conducted in Ethiopia, revealed that poor monitoring of health HIV programs such as EID, PMTCT, Reproductive health services by health workers was one of the reasons to poor follow-ups in PMTCT and EID programs because health facilities did not

17 have registered information on HIV positive mothers and their children who enrolled in EID and PMTCT but failed to return for follow-up care.(B. Merdekios and A. Adedimeji, 2011)

There are others factors that attributed to the attrition from EID program and this was among them.

A study revealed that accessible care during labor and delivery can facilitate successful

PMTCT programming this engulfing EID. Studies conducted in Malawi and Zimbabwe indicated that countless existing programs suffered from high attrition rates and unfinished follow-ups due to the fact that many women, especially those in rural areas, delivered at their homes rather than at a health facility. A study conducted in Ethiopia revealed that only 16% of births were attended by skilled personnel while in Uganda a study revealed that 71 (95.9%) of HIV positive women did not return for an institutional delivery. Cultural influences, poor socioeconomic status, and fear of the stigma associated with an HIVpositive status are factors that influence choice of delivery location. These were directly lost from the program despite being contenders of the program to help their little ones have a brighter future. (B. Merdekios and A. Adedimeji, “Effectiveness of interventions to prevent mother-to-child transmission of

HIV-1 in Southern Ethiopia 2011).

On the same note similar findings were also found in Kenya where 92% of respondents lacked privacy in counseling rooms, as indicated by the presence of more than 2 people in the room (J. A. Raburu, 2004.)

T. Mute, A. Akondé, A. Doumbia, et al., 2011 based on the studies that were conducted in

Uganda and Kenya pointed out that shortage of prevention of mother to child transmission staff together with early infant diagnosis staff shortages and interruption of supplies of materials, shortage and at times lack of space for counseling were some of the factors that

18 were leading to loss of clients from the early infant diagnosis program. These were resulting into long waits by the clients, leading to some clients failing to get post counseling, some clients leaving without having got their test results. This was also reported that constraints also compromised privacy and confidentiality of mothers.

19 CHAPTER THREE

METHODOLOGY

3.0 Introduction

This chapter focuses on the methodology on which the study was based. This chapter details out the study design, study population, study variables, sources of data, sample size determination, sampling procedure, data collection techniques and tools, data analysis procedure, quality control issues, ethical considerations, the study limitations and plan for dissemination of the findings from the study.

3.1 Study design

This utilized a cross sectional design, because the data was collected at one point in time which helped to answer the main research question concerning factors affecting retention of exposed infants enrolled in care for early infant diagnosis in Buwama sub-county Mpigi district. All the respondents were interviewed from their communities and both quantitative and qualitative data approaches were used.

3.2 Study area

Buwama sub-county is one of the 7 sub-counties that make up Mawokota County in Mpigi district. It is one of the four sub-counties that make up Mawokota south. It is located in southern Uganda almost 70 kilometers from the capital city. It is composed of 10 parishes and has 3public health facilities namely; Buwama HC III (Public facility), Mitala Maria HC

III (PNFP), and Bunjako HC III (Public facility).

20 3.3 Study population

The study population consisted of infants exposed to HIV/AIDS that were enrolled in EID program in Buwama sub-county within the period of January 2013 and April 2014 but dropped out of care.

3.3.1 Inclusion criteria:

i. All infants exposed to HIV who had dropped out of the EID program whose

mothers/caretakers consented to be interviewed.

3.3.2 Exclusion criteria:

i. All exposed infants who were enrolled in care but were under 6 months

ii. Those whose mothers/caretakers declined to be involved in the study on a voluntary

basis

3.4 Study Variables

The dependent and independent variables directing this study were as follows:

3.4.1 Dependent variable

The dependent variable was retention of exposed infants enrolled in EID program. This meant that the babies would receive 1st PCR at one and a half months (6 weeks),2nd PCR at

1year, and Rapid test at 18 months.

21

3.4.2 Independent variables are:

The independent variables constituted of factors influencing retention of exposed infants enrolled in care for EID services which included; Maternal factors, Social economic factors and Health system factors as described below;

Maternal factorswhich constituted of; Age, parity, Ante natal attendance, Facility delivered from, and EID knowledge.

Social economic factors were the second independent variable constituting of; Disclosure of

HIV status, employment status, marital status, cost of travel, family support and community involvement.

Health system factors were the third independent variable which constituted of the following; Accessibility to the health facility which included;; waiting time, location of the facility,Availability of services which included; Health personally, drug availability, equipment and infrastructure, Acceptability of the services which included the; cultural aspect and communication at different service stations.

3.5 Sources of data

The study utilized both primary and secondary sources of data. The primary source being the mothers who had their babies enrolled for EID services, the key informants constituted of the midwives, nursing assistants and VHTs from Buwama Health center III.

The primary data was also collected by focus group discussions; one of the FGD involved

Village Health Teams (VHTs) to find out the challenges faced by mothers of exposed infants as they seek the EID services. The other FGD was held with the mothers who were found at the facility but had missed their previous appointments and walk through observations

22 While secondary data was obtained from the EID registers where all the exposed infants are registered prior to having their 1st PCR test.

3.6 Sample size determination

The sample size was determined using Evan Moris formula, a formula that is usually used to calculate samples of small populations. n = Nz^2pq/(E^2(N-1)+ z^2pq) 177(1.645)*(0.8*0.2)/(0.05*2(177-1)+0.05*2(0.8*0.2) = 88

N (population size) = 177

Z (confidence level) =1.645 at 90% 88 participants were the desired sample size; E (+- error) = 0.05 however, on ground different situations had P (Probability of success) = 0.8 forced some of the mothers to migrate, hence Q (Probability of failure) =0.2 reducing the accessible sample to be only 82

participants.

3.7 Sampling procedure

Purposive sampling approach was used to obtain the study respondents who had their babies enrolled in the EID register but had dropped out of the program. Purposive sampling was utilized because the subject of interest were the exposed babies that had spent three and more months without coming back to the facility and they were already enrolled in the register.

Buwama HC III was also purposively selected among the three health center III that are within the sub-county because it has the largest number of clients and located centrally within the sub-county.

23 3.8 Data collection tools

Data on each of the study objectives was collected using questionnaires containing open ended and closed ended questions, Focus group discussion guide and a key informant interview guide were the other data collection tools used.

Review of the EID registers at Buwama health center III was done to obtain secondary data.

3.9 Data collection procedure

Data was collected using both qualitative and quantitative methods. The semi-structured questionnaire was administered by the trained research assistants on mothers/caretakers of exposed infants who had dropped out of the EID program for an interval of 3 months while they were being expected to come on a monthly basisafter obtaining consent from each of them. These were found in the community.

At the health facility, focus team discussions were conducted by the researcher with the help of a research assistant whose role included recording of vital information.

One focus group discussions consisted of 10 willing Village Health Teams (VHTs). The focus group interviews were guided by questions that helped assess the different issues relating to EID.

Key informant interview were conducted to obtain more information and expert opinion from the midwives nurses and a clinical officer.

3.10 Data analysis procedure

A data entry spread sheet was designed using Epi info to enter data, after which exported to

SPSS for analysis. The information then was outputted using the SPSS statistical software

Qualitative (FGD) data analysis was conducted using thematic and content analysis. All interviews were transcribed and transcripts read and coded manually to identify concepts,

24 patterns and themes relating to the objectives of the study. The themes which were included in the analysis were; status of retention into care of exposed infants, maternal factors, socio- economic factors and health system related factors.

A univaliate analysis was then done. The distributions of the different variables was then described in terms of frequencies and percentages, and presented in form of tables and figures

3.11 Quality control issues

The researcher ensured that research methods and tools were validated to suit the purpose of study. The research assistants were selected from among the village health team who were well conversant with the villages and were trained on how to administer the questionnaire and the basic conduct as they carry out the exercise. The reason for training them was to ensure that they were well conversant with the content in the research tool and how they were going to ensure that they keep the confidentiality. In a group with the assistants, the questionnaire was translated from English to Luganda a local language that is mainly spoken within the sub-county. The questionnaire was then translated back to English from Luganda to confirm that the message remained consistent.

The questionnaire was pretested from Mildmay Uganda an HIV clinic for comprehensive

HIV care in Wakiso district with similar settings prior to data collection for the purposes of checking validity and reliability of the tools. The questionnaires were reviewed at the end of the day to ensure completeness and accuracy of the entered data on a daily basis.

3.12 Ethical considerations

Approval to conduct the research was sought from the Institute of Health Policy and

Management of International Health Sciences University to conduct the study.The researcher

25 then was given permission from the office of the Director for health services Mpigi district to carry out this study from Buwama health center III, permission also from the LC III Buwama was sought to be able to move within the community to obtain data from the respondents’ homes of residence.

Participation by the respondents was through voluntary basis. They were informed of the importance of the study and hence the importance of giving accurate information and if they felt the need to back out at any moment during the interview they were free to do so at any time.

Before conducting the data collection, research assistants first sought informed consent from the respondent.

The respondents were also assured of confidentiality of their information.

3.13 Limitations for the study

Some respondents had migrated to other areas and hence could not be accessed

A proportion of the respondents had passes away

Furthermore another portion of the respondents were not willing at all to participate in the study. However the re researcher took the initiative to explain to the respondent the importance of the study and some were won over.

3.14 Plan for dissemination

A report will be given to the Institute of Health Policy and Management (IHPM) at

International Health Sciences University (IHSU), Director of Health Services office Mpigi district, Community Advisory Board at Buwama sub-county, and Mildmay Uganda the implementing partner involved in providing comprehensive HIV care to families and individuals infected and affected with HIV/AIDS, Buwama HC III where the study was

26 conducted from and findings will also be shared with the other facilities offering EID services within the district.

27 CHAPTER FOUR

PRESENTATION OF RESULTS

4.0 Introduction

This chapter presents the findings from the study which were analyzed and presented in the following sub-sections; general characteristics of the respondents, retention rate for the babies enrolled in care for EID services, maternal factors influencing retention of the babies in care for EID, social economic factors influencing retention rates of the exposed infants enrolled in care for EID services, health system factors affecting retention of enrolled exposed infants in care for EID services.

4.1 General characteristics of the respondents

Table 1 below shows the general characteristics of both the mothers and their babies. A total of 82 respondents volunteered to participate in the study with informed consent. The majority of the participants fell into the age group of 15-20 and 26-30 with the percentage of 23% and

24% respectively. That majority of the babies were aged between 6 months and 18 months 68

(83%).

The table also shows that majority of the mothers had attained primary level education

45(54.9%) as the highest level of education, 19(23.2%) were unschooled, 17(20.1%) tertiary level and only 1(1.2%) had gone as far as university level.

The table also shows that the majority of the respondents were Catholics 38(46.3%), followed by Muslims 22(26.8%), protestants 15(18.3% and born again 7(8.7%).

28 Table 1: General characteristics of all respondents

Characteristic Description Frequency Percent (n=82) (%) Mother's age 15-20y ears 19 23 21-25 years 16 20 26-30 years 20 24 31-35 years 17 21 36-40 years 11 11 above 41 years 1 1

Total 82 100

Baby’s age 6 months 5 6.1 6 to 12 months 34 41.5 12 to 18 months 34 41.5 above 18 months 9 11.0 Total 82 100.0

Baby’s position first born 18 22.0 second born 18 22.0 third born 18 22.0 4th born and above 28 34.1 Total 82 100.0

Followers age less than 6 months 10 12.2 more than 6 months 2 2.4 no follower 70 85.4 Total 82 100.0

Education status of the mother Unschooled 19 23.2 primary level 45 54.9 secondary level 17 20.7 tertiary or university 1 1.2 Total 82 100.0 Catholic 38 46.3 Muslim 22 26.8 Religion Protestant 15 18.3 Born again 7 8.5 Total 82 100.0

29 4.2 Retention rate for Early Infant Diagnosis

Figure 1: The retention rates of the exposed infants enrolled in the EID program

Source: Secondary data collected from the exposed infant register in Buwama Health

CenterIII

Figure 1 above shows that only 21.7% of the respondents had adhered to the program and were actively bringing their babies to the EID clinic as it was shown in the exposed infant register and the babies’ clinical chats. However 78.3% of the respondents had not reported to the facility within 3 months after their last appointment.

30 4.3 Maternal factors influencing retention of HIV exposed infants enrolled in EID

Figure 2: Parity of mother

The figure above indicates that mothers who had 2-4 children constituted the highest number

(46%) of mothers who dropped out of the program, followed by those that had 5-7 children

(28%).

“I have three children and I have no helper. This means I have to be at home most of the time to take care of these children” (Mother of three 29 years)

31 Figure 3: Awareness of sero status and ART initiation

The study showed that among the HIV positive mothers who dropped out of the program, majority of them (56%) got to know their sero status during pregnancy followed by those who knew their HIV status before pregnancy and only 18% got to know their sero status during young child immunization days. The study further revealed that 96% of these mothers were initiated on Anti-Retro-Viro Therapy immediately after diagnosis.

Figure 4:Adherence to ART among the Mothers

32 The study showed that among the mothers who were started on ART, 56% of these mothers were adherent to their drugs and among the 44% who were not adherent. Majority of them reported to not have been adherent to their ART because of side effects (52%), followed by stigma(25%), and forgetfulness(20%).

Figure 5: Places of delivery and Niverapine syrup initiation

The study showed that majority of the mothers delivered from a government facility (57%) followed by those who delivered from a private clinic (17%). Furthermore the study revealed that only 67% of babies born to HIV positive mothers received NVP syrup immediately after birth.

33 Figure 6:Babies’ sero status after the 1st PCR and EID attendance

The study revealed that among the results that came back 97% were negative and this was one of the reasons why 45% of the mothers never returned to the EID clinic.

Figure 7: Other reasons for dropping out

The study also showed that the other reasons why mothers didn’t come back for their babies’ care were mainly; stigma (43%) and failure to get their babies results because they never came back to the facility (43%). Others were; lack of transport (6%), and spouse refusal

(8%).

34 Figure 8: Breastfeeding status and reasons advanced

The study revealed that only 52% of these mothers had exclusively breastfed and the major reason why the other mothers (48%) did not breastfeed was because they didn’t have enough breast milk.

Figure 9: Babies’ immunization status and reasons advanced

The study further showed that 94% of the babies who were not brought back to the EID clinic had actually been immunized and those who were not (6%) the main reason was lack of time

(60%) followed by lack of transport (20%) and others (20%).

35 Figure 10: Sites for immunization

The study showed that majority of the mothers who had dropped out of the EID program took their babies to the outreaches for immunization and only 35% received EID services at these outreaches. The study further revealed that among those who never received EID services at the outreaches (65%) only 35% were advised to go to the facility for these services whereas the majority (65%) was not.

4.4 Socio-economic factors influencing retention of exposed infants enrolled in EID

Figure 11: Employment status mothers/caretakers

36 The study indicated that the majority of the women (69%) that were interviewed had no formal employment. They were only depending on the handouts of their relatives.

I do not have any employment and yet my husband is not willing to give me any money. I decided to leave the program because it was demanding for a lot of money to transport myself to the hospital almost every week.

Figure 12: Affordability of transport to the Health Facility Dropped out mother

The study showed that among the mothers who incurred some costs to the facility, only 43% could afford and 57% could not afford transport and among those who couldn’t afford transport 68% reported that it was the cause of their drop out.

37 Figure 13: Marital status of mothers/care takers

The study showed that among the mothers who dropped out of the program majority of them were married (43%) followed by those who were cohabiting (28%), it further showed that

71% of these mothers resided with their spouses and 21% with relatives and those who lived were only 9%.

Figure 14: Disclosure rates of sero status of the mothers/caretakers

38 The study showed that among the mothers who stopped bringing their babies for the EID services, 51% had actually disclosed to the people they lived with and among those who had not disclosed (49%), majority of them(83%) said failure to disclose was the main cause of their drop out of the program.

Figure 15: Family support patterns

The study showed that among the HIV positive e mothers who stopped coming for the EID services for their babies majority of them (55%) never felt supported by their relatives and among the 37% who felt supported, majority received financial support(51%), followed by emotional support(30%) whereas only 19% were physically escorted to the facilities.

39

4.5 Healthy system factors on the retention of HIV exposed infants enrolled in the EID

Table 2: Health system factors affecting retention in EID

Frequency Percentage Characteristic Description (n=82) (%) Distance from health facility less than 5 kms 25 30 5 kms 24 29 More than 5 kms 32 39 I don’t know 1 1 Total 82 100

Means of transport to the 37 45 facility Boda boda Taxi 4 5 Walk 41 50 Total 82 100 Fare 1000 to 5000 46 56 5000 to 10000 20 24 above 10000 1 1 no cost 15 18 Total 82 100

Any nearby health facility? Yes 61 74 No 21 26 Total 82 100

If yes why don’t you go there? No EID services 12 19.7 I prefer this facility 8 13.1 It’s for paying 41 67.2 Total 61 100

How would you rate the waiting time Acceptable 4 5 Unacceptable 6 7 Extremely unacceptable 72 88 Total 82 100 Reasons for long waiting time long lines 9 11 Health workers come late 20 24

40 Take long to get our files 12 15 Few health workers 41 50

Total 82 100

Description Percentage Frequency (%) Characteristic (n=82)

Baby's age at first test 6wks to 2 months 34 41.5 3-5 months 41 50.0 6-9 months 5 6.1 10-12 months 2 2.4

82 Total 100

Baby initiated in Septrin Yes 79 96 No 3 4

82 Total 100 Mother received baby's results Yes 39 48 No 43 52

82 Total 100

Turnaround time for baby’s 0 0 results 2 weeks 2-4weeks 25 64 4 weeks and above 14 36

39 Total 100 Reasons for long turnaround Followed the 19 49 time appointment Results took long 19 49 Others 1 2

39 Total 100 Number of visits before getting results 1visit 19 48.7

41 2 visits 10 25.6 3 visits 10 25.6 Total 100 39

Extremely satisfied

How would you rate the 9 Satisfactory 7 attitude of the health workers? 5 4 26 Dissatisfied 21 61 50 Extremely dissatisfied

The study revealed that 39% of the mothers who had dropped out of the program traveled more than 5kms to reach the facility and 30% traveled less than 5kms, whereas the 29% were within the recommended distance of 5kms. The study further showed that 50% of them walked to the health facility, 45% used Bodas and only 5% used taxis.

For their transport fare the study revealed that only 18% of these mothers didn’t meet any transport cost but 56% of these mothers spent between 1000/= to 5000/=, 24% spent 5000/= to 10,000/= and only 1% reported to have been spending more than 10,000/= per visit.

The study also showed that 74% of these mothers by passed a health facility as they came to

Buwama HCIII as opposed to the 26%, but among the 74% majority of the mothers (67.2%) reported that they couldn’t go to these facilities because they charge for their services, 19.7% reported that the facilities didn’t offer EID services and 13.1% preferred to have her services from Buwama HC III.

The study also found out that 88% of these mothers really waited for long hours before being attended to and only 5% were satisfied with the waiting time. The study also revealed that the

50% of the mothers reported that the reason they waited for long hours was because the health workers were few, 24% expressed that they heath workers come in late for their duties,

42 15% reported to have delayed at the health facility because their files were lost, and 11% was because of the long lines.

The study revealed that only 41% of the babies who dropped out of the program had received a timely test which is recommended between 6weeks and 2months. Majority (50%) had their

1st PCR done between 3-5 months. Furthermore, the study also revealed that majority (96%) of the babies who had their 1st PCR were initiated on Septrin.

The study revealed that among the mothers who had dropped out of the program, only 48% of them had received results, no one received their babies’ results within the recommended time of two weeks. Majority of them (64%) received their babies’ results between 2-4weeks.

36% of these mothers received their results after 4 weeks. The study further revealed that the main reasons why mothers took long to get their babies’ results were; following the appointments they were given (49%), and the results taking long to reach the facility (49%).

Majority of the mothers who received their babies’ results made one visit whereas 26% of these mothers made more than one visit to have their babies’ results given to them.

The study further revealed that only 9% of the mothers reported to be extremely satisfied with the health workers’ attitude 5% reported satisfaction whereas 26% reported to be dissatisfied, 61% reported to be extremely dissatisfied with the health workers attitude.

4.6 Observations

4.6.1 Walk through observations

The MCH clinic runs daily on an integration basis where all services run at the same time i.e.

Antenatal care with Ultra-sound scan, eMTCT & EID clinic, postnatal clinic, Family planning, and the Labour ward.

43 The EID clinic is located right within the MCH premises. There is no specific room or location set apart for this clinic.Mothers who come to attend the EID clinic report to the same station as other mothers seeking other MCH services and are served on the basis of first come first serve.

Client’s flow;

There is no specific flow of the mothers, the clinic runs on a first come first serve basis. No specific health worker allocated for any service. Utmost a mother seeking EID services will make two lines; the one for seeing the health worker and one for receiving both hers and her baby’s drugs.

When any tests need to be done, this mother is sent to the lab which is approximately 100 meters from the MCH building, and she will have to sit in another line until her turn then goes back to the H/W who sent her for other services which means that she will have to make more than one line for her to receive all the services.

4.6.2 Key informants (Expert opinion)

These were the health workers who work in the MCH department, including Midwives,

Nursing assistants and the support staff (VHTs and Peer mothers).

Health workers involved in EID

The facility has a total of 3 Midwives, 1 Nursing assistant, 2 Peer mothers, and a total of 5

VHTs.

On average, there is one Midwife on duty during day assisted by the Nursing assistant and the peer mothers. There is no one specifically responsible for the EID clinic whoever is on duty is obligated to see these mothers. The midwife on duty is obligated to attend to all the mothers in the clinic which is overwhelming especially if there is a mother in labor who may end up needing most of the attention.

44 Some of the challenges faced by the Health workers in delivering EID

Limited human resource; this is the main challenge that the health workers reported; “The work is too much for us as midwives, the ministry of health always comes up with new interventions which are great but they are too much for us because they never think of increasing the human resource” Midwife

Documentation; “everything we do requires us to document yet every service has its own register!” the midwife reported that seeing one mother and her baby requires her to document in the mother and the baby’s exercise book, both the files, ART register, EID register,

Appointment book, dispensing log, etc.

The midwife reported that most of the mothers don’t want to come back on the appointment days they are scheduled on.“They want to come on the other days where they will disguise themselves with the other women pretending to have come for other services”

Infrastructure;

The midwife reported that most of the mothers really complain about the fact that there is no privacy at all. “The place is so open with not enough rooms to make sure that the mothers are at least seen privately”. The midwives reported that the issue has been raised more often in the district meetings but only promises have been made without action.

Results turnaround time

The midwife also reported that the recommended turnaround time by the ministry of health is two weeks though this has not been the case. There is a Hub system put in place where a bicker man is responsible for collecting and returning the results to the health facility weekly.

Unfortunately, although this has been put in place still result take long to come back. “We have mothers whose babies have turned 8 months without having their first PCR results and

45 this really demotivates them to keep coming if every time she comes she doesn’t get her baby’s results. Remember this mother is anxious to know her baby’s status”

The midwives also reported that sometimes they end up getting results for other facilities which are far away from their facility. This may be the same thing that happens to their results as well.

Lost to follow up

“When mothers give birth, they rarely come back to for the subsequent visits”. The midwife reported that the EID follow up visits scheduled to fit in the immunization schedule with a hope that these mothers will be captured from the YCC. Unfortunately, many mothers end up attending the immunization outreaches yet no EID services are offered at these outreaches.

“Normally the person who goes for the immunization outreaches is a nursing assistant escorted by a VHT. They cannot offer the EID services”.

46 CHAPTER FIVE

DISCUSSION

5.0 Introduction

This chapter presents the discussion of the study findings. The discussions are in line with the sub-sections namely; general characteristics, the retention rate of the exposed infants enrolled in care for EID services, maternal factors influencing retention of exposed infants in care, the socio- economic factors influencing retention of exposed infants enrolled in care and health systems factors affecting retention of exposed infants enrolled in care for EID.

5.1 General characteristics of the respondents and retention of exposed infants

Only 1.2% of the respondents had been educated up to tertiary or university level implying that the less educated a mother is the less likely for her to seek medical care where there is no special alarm with her baby. To effectively seek EID services for the baby the mother has to fully have understood the danger her baby is in for her to be committed to the program. This is in agreement with Ioannidis et al, (1999) who found out that the less educated were less likely to seek services for their babies in the EID clinic. Education level is a factor that is associated with having a positive attitude and the willingness totake an HIV test (Bajunirwe,

2005).

Maternal education enhances communication between the mother and healthcare providers and also improves retention of provided information, leading to better implementation of recommended interventions. Education also empowers the woman to have autonomy in making important decisions without relying on other people. It is therefore important for policy makers in sub-Saharan countries to formulate policies that promote education of girls and women.

47 Elizabeth (2001) proposed the introduction of MTCT education as part of the prevention of

HIV/AIDS among the adults including PMTCT education at the community level is essential to foster an environment supportive of women who face difficult decisions related to MTCT and its prevention.

5.2 Retention rate of the exposed infants enrolled in care for EID services.

The findings of the study showed that the retention rate of the exposed infants enrolled in care for EID services at Buwama HC III in Buwama sub-county in Mpigi district was 21.3%. and the lost to follow up was up to 78.7% and this is in agreement with the UNICEF report of

2010 were reported to have been lost to follow up during the EID cascade and this was attributed to poor integration of the PMTCT services within the postnatal services offered at the health facilities.

Based on the results, it can be seen that a large proportion of mother-child pairs who were registered in EID programs were lost to follow up. The HIV status of these babies is therefore unknown. This implies that it is impossible to draw any conclusions on the impact or effectiveness of the program from this data. The high loss to attrition rate also means that

HIV infected mothers and their exposed infants did not receive routine medical care. The missed opportunities in infant diagnosis can also delay HIV positive infants from accessing timely treatment, which is detrimental to their survival.

J Acquir Immune Defic Syndr 2010 reported that separate programmes for maternal and infant HIV prevention and care services demonstrated high levels of attrition of mother baby pairs from the prevention and care services. This elevated thee levels of mother to child

48 transmission of the HIV virus, late infant diagnosis, delayed pediatric antiretroviral therapy initiation, and high HIV infected infant mortality.

5.3 Maternal factors influencing retention of exposed infants enrolled in care for EID services

The majority of the mothers who had dropped out of the program had actually attended ANC and a relatively a good percentage of them attended up to 4 times which are the recommended number of times an expecting mother is supposed to attend. This was in contrast with Nuwagaba H et al., 2007 whose study showed that most of the mothers dropped out of the program after one visit to the ANC. The opportunity that Mpigi district has is that the mothers attend ANC religiously because of the benefits they receive for their attendance including having a free ultra sound scan for their pregnancies on the 1st and 4th visit and so this motivates them to keep their appointments. Through their appointment keeping they are able to have a set of counseling sessions about ART adherence and that is partly the reason as to why at least 56% of these mothers reported to have been adherent to the ART during pregnancy.

The study also revealed that only 18% of these mothers had actually known their status before pregnancy as opposed to the majority who knew they are HIV positive during pregnancy or breastfeeding. The reason as to why they had dropped out of the EID program was because of stigma. This is true because among the women who reported to not to have dropped out of the program because of their baby’s HIV negative result and lack of transport,

Stigma was one of the main reasons why mothers dropped out of the program (43%). With the current mode of service delivery in ANC which is focused ANC, mothers are routinely screened for HIV and if found to be positive they are started on ART regardless of the CD4.

49 Because of the timeframe most of these mothers don’t receive quality counseling for positive living and as a result after delivery, these mothers will not endeavor to come back to the facility.

Furthermore, the study revealed that the mothers perceived that the babies being HIV negative on the 1st PCR meant that the baby was now safe enough and didn’t have to make any more routes to the clinic. Among the 97% of the babies who were negative, at least more than half (55%) of the respondents reported to have dropped out of the program because the baby was negative. This implies that the either the mothers didn’t understand the EID cascade or the counseling she received as she was being given the results was not adequate enough.

The findings are supported by Amin S et al 2011 who reported that care givers were only motivated to come back to the EID clinic to ascertain their babies’ HIV status. Once the baby is referred to as negative, they will not come back for the subsequent appointments. This implies that the health workers have to be trained adequately on how to package their counseling as they give out these results so that the mothers/caretakers know fully that as long as the baby is still breastfeeding, it is still exposed to acquiring the virus and therefore the other two tests are still vital for the baby to have.“Some parents assume once DBS result is probably negative, the children are negative, they don’t bring them back for follow up unless the children has an acute illness is when they have no alternative there and come back”. Service provider

5.4 Socio-economic factors on the retention of HIV exposed infants enrolled in the Early

Infant Diagnosis program

Majority of the mothers had no formal employment which forced them to drop out of the program since they could not afford the costs they had to incur to seek the EID services for

50 their babies and for themselves. Most of these mothers in the rural setting rely entirely on their husbands for support and if they are not involved then it becomes almost impossible for them to seek the services. 49% of these mothers had not disclosed implying that they had to meet all the costs all on their own concerning seeking services for the child and herself. This definitely causes her to compromise on some areas if not all as reported in the study at least the majority of the respondents who had not disclosed to anyone ended up dropping out of the program. Key informants considered women disclosing their HIV status to their partners as being particularly difficult. They saw this as compounded by a lack of male partner involvement in PMTCT activities at all sites. They also reported non-disclosure of the HIV status to the partner as creating serious problems in family planning. Some women, for example, had returned with second and third pregnancies after initial diagnosis of HIV

(Nuwagaba et al., 2007)

The study also revealed that the respondents did not feel fully supported in the ways that would motivate them to continue with the care. “If only my husband would come with me to the facility and here what the health workers say about taking care of this baby, he would not complain every time I ask him for transport or milk for this child” Respondent mother of 3

Some caregivers report being motivated by their partners and social support groups to bring their children back for care. However, others report lack of appropriate social support structures to facilitate disclosure and handle stigma as contributing to general drop out (Amin

S et al., 2011).

51 5.5 Healthy system factors on the retention of HIV exposed infants enrolled in the Early

Infant Diagnosis program

The results of the study also indicate that health facility related factors contribute a lot to high rates of drop out of the EID program. Majority of the respondents reported that they were extremely dissatisfied with the health workers’ attitude towards them. This indicates the importance of positive demeanor of the staff and clear explanations of the program’s procedures, for example, women who cannot complete follow-up visits need to know that they will be welcomed, not scolded, for returning again. When women return, staff members must be available to meet them. This is line with Painter T et al, 2004 who said that the health workers are being looked at as a problem rather than a solution in case the mother wishes to start afresh after having missed a couple of visits.

The other challenge with the health system that the study revealed was the waiting time.

Among the respondents, only 5% were satisfied with the time that they spent at the facility.

Majority of the respondents reported that the waiting time was extremely unacceptable with majority pointing out that the reason they had to take long at the health facility was because the health workers were very few. Having few health workers attending to the clients can sometimes be disastrous especially in the setting where the services are integrated. “The work is too much for us as midwives, the ministry of health always comes up with new interventions which are great but they are too much for us because they never think of increasing the human resource”. Service provider

According to T. Mute, A. Akondé, A. Doumbia, et al., 2011, a study done in Uganda and

Kenya revealed that shortage of materials used in EID and shortage of staff resulted into

52 client’s dissatisfaction because of the long waits they had to endure and sometimes going back without a service because the facilities lack supplies to carry out the tests.

The study also revealed that 52% of the mothers had not received their babies’ results even when the babies were almost turning to one year of age. “I decided to stop going to that facility because I failed to get my baby’s result even when my baby is 8 months now. My husband and I agreed to look for money and go to Nkozi hospital hopefully if we pay we will get the results fast”. Respondent 32

Knowing the child’s sero status to an HIV positive mother is the motivating factor for continuing with the program even after delivery. Among infants with PCR-positive results, very high rates of loss to follow up occurred in the postnatal period. Many caregivers never received the EID results, and very few sites reviewed had robust mechanisms in place to follow up with infants whose parents or caregivers did not return for results. Standard operating procedures are needed by which sample collection and result return are closely linked to counseling, clinical care, and to follow up. It is critical for all sites to have a clear understanding of the EID sample and result flow, the patient flow, and who is responsible for key infant care tasks. (Chatterjee et al.2011)

Through a walk through observation, it was very evident that there is luck of privacy as these mothers are being attended to by the midwives since there infrastructure is poorly planned with a whole big room without any partitions to accommodate privacy. “Sometimes mothers are willing to be counseled but we have a problem of counseling rooms, we don’t have any privacy I highly believe that we have done public disclosure indirectly with these mothers no wonder most of them don’t come back”. Key informant.

53 CHAPTER SIX

CONCLUSIONS AND RECOMMENDATIONS

6.0 Conclusions and recommendation

This chapter presents the summary of the findings of the study under two key themes;

Conclusions and Recommendations.

6.1 Conclusions

Based on the research questions of the study, the following were the conclusions.

6.1.1 Retention rate of exposed infants enrolled in care for EID services in Buwama HC III The study revealed that only 21.7% of the babies enrolled for EID services in the period of --- were retained in care. The high loss to follow up rate also means that HIV infected mothers and their exposed infants did not receive routine medical care. This calls for tailored follow- up services integrated into existing maternal and child health programs with a clear sense of ownership and accountability from staff involved in the care. More programmatic attention and support is needed to retain HIV-exposed infants in care and ensure that those testing positive initiate treatment in a timely manner and the ones whose 1st PCR tests are negative they stay negative. This can only be attained through regular monitoring of the exposed infants till 18 months of age.

6.1.2 What are the maternal factors influencing retention of HIV exposed infants enrolled in the Early Infant Diagnosis program in Buwama sub-county Mpigi district?

Mothers who had more than 2 children found it hard to continue with the program because of the duties they had for the other children, furthermore, those who had known their status before pregnancy seemed to not have so much stigma as the ones who knew their HIV status

54 during pregnancy. This calls for integrated preventive health education not only for pregnant women and their partners, but also for the general public. At the existing sites, these can be achieved through drama performances, peer education activities at community level, and group counseling held at the antenatal clinics. This will help to raise awareness and openness in discussing HIV infection and any interventions and to lessen stigma and fear surrounding

HIV infection.

6.1.3 What are the Socio-economic factors influencing retention of HIV exposed infants enrolled in the Early Infant Diagnosis program in Buwama sub-county Mpigi district?

Understanding the socioeconomic factors that affect the ability of mothers to comply with the

EID program will assist resource-limited centers in devising strategies to achieve follow up of exposed infant. The main challenge that these mothers face is lack of disclosure of their

HIV status to their close relatives/husbands. This means that they will not be able to receive the necessary support to take care of their babies and themselves. Nevertheless, most of the challenges rotate around poverty

6.1.4 What are the healthy system factors affecting retention of HIV exposed infants enrolled in the Early Infant Diagnosis program in Buwama sub-county Mpigi district?

The results of the review also indicate that health facility related factors contribute a lot to high rates of LTFU in EID. The results indicate the importance of positive demeanor of the staff and clear explanations of how the EID cascade runs, timely return of PCR results and privacy would be some of the motivating factors to have these mothers come back for the

EID services,

The facility lacks a well-designed infrastructure, have staff shortages and the human resource for health (HRH) system is very weak and the comprehensive EID cascade largely relies on

55 the midwife as the interface between the mother and the health system. Health facilities are typically underfunded and have inadequate infrastructure and management systems for EID commodities including DBS kits, ARVs, and other essential drugs.

Other important retention barriers to consider in planning for strategies to reduce high LTFU include the local health infrastructure, issues of transport and access, human resources availability to implement the program, necessary training of program personnel, and adequate supervision and follow up

6.2 Recommendations

The district should consider a lift up of the MCH building and partition the building into rooms that can promote privacy as the mothers receive the services.

The ministry of health needs to consider the issue of Human Resource for Health to cover the gap of understaffing at the facility. This will also bridge the challenge of long waiting at the facility.

Policies should be designed that protect the innocent babies; the challenge of having no support from the partners and other community members leaves the baby with no protection.

At least there should be by-laws to work against the men who refuse their wives from seeking care for these babies so that they are protected.

Further operational studies are also required to explore other public health models that can help in reducing loss to follow up of the exposed infants. Only few studies have been carried out to identify reasons for poor retention of HIV exposed infants in Uganda, there is need for researchers to conduct further studies which are qualitative in nature.

56 This study has ineffectively addressed husband’s participation in the program of EID yet they play an important role in letting mothers be part of the program. This is one area in particular that might require additional research

57 REFERENCES

Painter K. et al, 2005nSociodemographic factors associated with participation by HIV-1- positive pregnant women in an intervention to prevent mother-to-child transmission of HIV in Côte d'Ivoire.

UNICEF, 2009Briefing Paper, Scaling up early infant diagnosis and linkages to care and treatment.

UNAIDS, 2015.World leaders launch plan to eliminate new HIV-1 infections among children by 2015.

Merdekios B and Adedimeji.A, 2011.Effectiveness of interventions to prevent mother-to-child transmission of HIV-1 in Southern Ethiopia.

Nyandiko W, Otieno-Nyunya, B. Musick et al, 2010Outcomes of HIV-exposed children in Western Kenya: efficacy of prevention of mother to child transmission in a resource- constrained setting.

Moth I A,Ayayo, and D. O. Kaseje, 2005.Assessment of utilisation of PMTCT services at Nyanza Provincial Hospital, Kenya.

Nuwagaba-Biribonwoha H, R. T. Mayon-White, P. Okong, and L. M. Carpenter, 2007 Challenges faced by health workers in implementing the prevention of mother-to-child HIV transmission (PMTCT) programme in Uganda.

Raburu J.A, 2004Factors influencing quality of maternal health services: a case study of Nyanza and Nakuru Provincial Hospitals.

Kuhn L, and H. M. Coovadia, 1999.Influence of infant-feeding patterns on early mother-to- child transmission of HIV-1 in Durban, South Africa: a prospective cohort study.

Zachariah R et al, 2008. Reasons for loss to follow-up among mothers registered in a prevention-of-mother-to-child transmission program in rural Malawi.

Lim, et al.2010Improving prevention of mother-to-child transmission of HIV care and related services in Eastern Rwanda.

58 Dube et al. 2006.HIV prevalence and trends from data in Zimbabwe, 1997–2004,” Sexually Transmitted Infections.

Baek C and Rutenberg N, 2010Looking backward, moving forward: implementing PMTCT programs in resource-constrained settings, Horizons studies.

Abrams, Lband W. M. El-Sadr, 2007 Prevention of mother-to-child transmission services as a gateway to family-based human immunodeficiency virus care and treatment in resource- limited settings: rationale and international experiences.

Teck et al 2004Simplifying and adapting antiretroviral treatment in resource-poor settings: a necessary step to scaling-up,” AIDS,

Levy et al. 2006, Rapid scale-up of antiretroviral therapy at primary care sites in Zambia: feasibility and early outcomes.

Bridges.org, 2005 Testing the Use of SMS Reminders in the Treatment of Tuberculosis in Cape Town, South Africa, City of Cape Town Health Directorate and the International Development Research Council.

K. ShermadiniKet al.2008, Prevention of mother-to-child transmission of HIV: the Georgian experience, Central European Journal of Public Health

Mǎtuşa. Ret al.2005, Mother-to-child transmission of HIV infection in Romania: results from an education and prevention programme.

Peters J et al. 1998, Barriers to care among persons living with HIV/AIDS in urban and rural areas,” AIDS Care.

Wheater C, P et al. 2009, Influence of socio-demographic factors on distances travelled to access HIV services: enhanced surveillance of HIV patients in North West England.

Smith M et al. 2008, Early diagnosis of human immunodeficiency virus in infants using polymerase chain reaction on dried blood spots in Botswana's national program for prevention of mother-to-child transmission.

59 Nayagam D et al. 2007, Why are children still being infected with HIV? Experiences in the prevention of mother-to-child transmission of HIV in south London,” Sexually Transmitted Infections.

L. M. Mofenson, 2003, Advances in the prevention of vertical transmission of human immunodeficiency virus,” Seminars in Pediatric Infectious Diseases.

Kanshana S and R. J. Simonds 2002, National program for preventing mother-child HIV transmission in Thailand: successful implementation and lessons learned.

Khatun F, and S. M. Grantham-McGregor, 2006Psychosocial stimulation improves the development of undernourished children in Rural Bangladesh.

Albrecht S, et al.2006, Predictors of nonadherence to single-dose nevirapine therapy for the prevention of mother-to-child HIV transmission.

OKeeffe.A, Godwin. J, and Moodie, 2005HIV/AIDS in the Asia Pacific Region: analytical report for the white paper on Australia’s aid program Thailand.

Field-Ngwuer and L. Nyblade, 2012Community Involvement in the prevention of mother-to- child Transmission of HIV-1: insights and recommendations.

N. Semiyaga, and T. Tylleskär, 2010Determinants of male involvement in the prevention of mother-to-child transmission of HIV programme in Eastern Uganda: a cross-sectional survey.

60 APPENDICES

APPENDIX I: CONSENT FORM

Date ………………………………..

Qn. No. ……………………………

Distance of the parish from the health facility………………………….

Title: Factors influencing Retention of HIV exposed infants enrolled in care for early infant diagnosis in Buwama Sub-county Mpigi district

Researcher: Lillian Nakanyike

Study Site: Buwama sub-county

Introduction: Hello. My name is …………………………………….working as a data collector in this study that assesses the factors influencing Retention of HIV exposed infants enrolled in care for early infant diagnosis in Buwama Sub-county Mpigi district, under approval by the International Health Sciences University , Uganda. Thank you for allowing us to share your precious time for a brief discussion about this study as it is conducted among mothers and care takers of exposed infants to HIV/AIDS.

The information you give us could help us consolidate results that might help policy makers in this district to design appropriate EID program for babies who are exposed to the HIV virus in this area so as to increase uptake. The study will be conducted through interviews.

I’m going to ask you some general and in-depth personal questions.

Your answers are completely confidential; your name will not be written on this form, and will never be used in connection with any of the information you tell me. If you don’t want to answer any questions, you may end this interview at any time you want to. However, your honest answers to these questions will help us better understand for our study objective and for future action. We would greatly appreciate your participation in this study.

Are you willing to participate in the study? Yes.…………... No……………

61 Signature of interviewee…………………. (Signature of interviewee certifying that informed consent has been given verbally by respondent)

SECTION A: General characteristics

1. What is your age in complete years?

------

2. What is the baby’s age?

1) 6weeks 2). 6-12months 3).12-18months 4.above 18months

3. What position is this child?

1) 1st position 2). 2nd 3). 3rd 4). 4th 5). 5th and above

4. What age is the follower of this baby?

1). Less than 6months 2) more than 6months 3) no follower

4. What is your education level?

1). Unschooled 2) Primary level 3) Secondary level 4) University/Tertiary

6. What is your religion?

SECTION B: Maternal Factors

1. How many children do you have?

1) 1 child 2) 2-4 children 3) 5-7 d) above 7

2. Did you attend ANC while pregnant with this child?

1) Yes 2). No

3. If yes to the above question how many times did you attend ANC?

1). Once 2).2 times 3).3times 4). 4times and more

4. When did you get to know about your HIV status?

1). Before pregnancy 2). During Pregnancy 3). YCC

5. Where you initiated on ART immediately after diagnosis?

62 1). Yes 2). No

6. If yes, did you adhere to your ART?

1). Yes 2). No

7. If No, what are some of the reasons for not adhering to your ART?

1). Side effects 2). Stigma 3) Forgetfulness 4) Others

8. Where did you deliver from?

1). Government facility 2).Private clinic 3).TBA 4). Home

9. Did you take back the baby at one and half months for the first test?

1). Yes 0). No

10. Was the Baby given Niverapine syrup at birth?

1). Yes 2). No

11. What was the baby’s sero status after the first test?

1). Negative 2). Positive

12. If Negative, is the reason you stopped bringing the baby for EID services?

1). Yes 2). No

13. If No, what could be the other reasons for dropping out?

1). No transport 2). My spouse refused 3) Stigma 4) Results never came back

14. Did you breastfeed your baby exclusively in the first 6 months?

1). Yes 2). No

15. If No, why?

1). Work 2). Not enough milk

16. Did you take the baby for immunization?

1). Yes 2). No

17. If No, why?

63 1). No time 2). Lack of transport 3) Others

18. Where did you take the baby for immunization?

1). Buwama HC III 2). Outreach 3) Private clinic

19. Was the baby given EID services during immunization?

1). Yes 2). No

20. If No, where you advised to return for EID services?

1). Yes 2). No

SECTION C: Socio-economic factors

1. Are you employed?

1). Yes 2). No

2. Can you afford the transport costs to the facility?

1). Yes 2). No

3. If No, is this the reason why you stopped taking the baby to the EID clinic?

1). Yes 2). No

4. What is your marital status?

1) Single (never married) 2). Married 3) Cohabiting 4) Divorced/Separated/Widowed

5. Who do you live with?

1). Spouse 2). Relative 3) Alone

6. Have you disclosed your HIV status to any of the people you live with?

1). Yes 2). No

7. If No, could this be the reason why you dropped out of the program?

1). Yes 2). No

8. Do the people you live with support you to go for this child’s services?

1). Yes 2). No

64 9. In which ways do they support you?

1). physically (escorting her to the facility on their appointment)

2). emotionally (counseling) 3). Financially

SECTION D: Health systems factors

1. What is the distance from home to the health facility

1). Less than 5kms 2)).5kms 3).More than 5kms 4). I don’t know

2. what means of transport do you use to the health facility?

1) Boda boda 2) Tax 3) walk

3. How much fare do you spend on transport?

1) 1,000-5,000/= 2) 5,000-10,000/= 3) Above 10,000/=

4. Is there a health facility near by your home?

1). Yes 2). No

5. if yes why don’t you go to that facility?

1). No EID services 2) I prefer this facility 3) It’s for paying

6. How would you rate the waiting time?

1). Acceptable 2) Unacceptable 3) Extremely unacceptable

7. what are some of the reasons for long waiting time?

1) long lines 2) Health workers come late 3) Take long to get our files 4) Few health workers

8. What was the baby's age at first test

1) 6wks to 2 months 2) 3-5 months 3) 6 -9 months 4) 10-12 months

9. Was the baby initiated in Septrin

1) Yes 2) No

10.Did you receive baby's results

1) Yes 2) No

65 11. what was the turnaround time for baby’s results

1) 2 weeks 2) 2-4weeks 3) 4 weeks and above

12. What reasons where you given for long turnaround time

1) Followed the appointment 2) Results took long 3) Others

13 How many number of visits did you make before getting results

1) 1visit 2) 2visit 3) 3visit

14. How would you rate the attitude of the health workers?

1) Extremely satisfied 2) Satisfactory 3) Dissatisfied 4) Extremely dissatisfied

Section E; Health system

Expert opinion

i. Briefly describe how EID services are organized in this facility?

ii. How many health workers are involved in EID in this facility? iii. Are they stationed with in the EID or they have other assigned duties? iv. What are some of the challenges faced by the facility in delivering EID?

v. How would you rate retention of exposed infants in the EID program in this facility?

66 APPENDIX II: BUDGET FOR CONDUCTING THE RESEARCH

No. Item Description Unit Cost Estimated

cost in UGX

1 Secretarial Secretarial, photocopying, processing 100,000 500,000

Services of research instruments & reports

2 Stationery Notepads, stationery to use in the field 50,000 250,000

etc.

3 Communication Airtime (5 Persons including the 100,000 500,000

Principal researcher)

4 Subsistence 5 research Assistants 15 days 200,000 1,000,000

allowance

5 Dissertation/Rep Printing and binding 60,000 350,000

ort production

6 Miscellaneous Contingency 1 100,000

Total 2.700.000

67 APPENDIX III: LETTER OF RECOMMENDATION

68 APPENDIX IV AUTHORIZATION LETTER

69