FACTORS ASSOCIATED WITH LOSS TO FOLLOW UP OF HIV-EXPOSED INFANTS-CARETAKER PAIRS ENROLLED IN THE EARLY INFANT DIAGNOSIS CLINIC:
A CASE STUDY OF LIRA REGIONAL REFERRAL HOSPITAL
BY
ELANG MARGRET
2009/HD20/16870U
SUPERVISORS:
PROFESSOR FRED NUWAHA
DR. RAYMOND TWEHEYO
A RESEARCH PROPOSAL SUBMITTED IN PARTIAL FULFILLMENT OF THE REQUIREMENTS FOR THE AWARD OF DEGREE OF MASTERS OF PUBLIC HEALTH MAKERERE UNIVERSITY.
2015
DECLARATION
I hereby declare that to the best of my knowledge, this dissertation is my original work and has
never been submitted to this university or any other institution of higher learning for an academic
award or publication. I hereby submit it for the award of the degree of Masters of Public Health
of Makerere University.
………………………………. … Date......
Elang Margret (Author)
This dissertation has been submitted with the approval of the following supervisors:
……………………………………. Date......
Professor Fred Nuwaha - Makerere University School of Public Health
……………………………………. Date......
Dr. Raymond Tweheyo - Makerere University School of Public Health
i
DEDICATION
I dedicate this book to my Father and Mother; Micheal and Rose Okalo for their constant
encouragement to always aim higher and for the loving support and care they have given me while writing this dissertation.
ii
ACKNOWLEDGEMENTS
I would never have been able to finish my dissertation without the guidance of my supervisors, help from friends, coupled with emotional and spiritual support from my family.
I wish to express my deepest gratitude to both my supervisors‟ Professor Nuwaha Fred and Dr.
Tweheyo Raymond, who spent their valuable time guiding me and reading through the several drafts of the proposal and dissertation. Thank you very much for the informative contributions you made towards the success of this work.
I also want to extend my thanks to the acting Executive Director of Lira Regional Referral
Hospital Surgeon Dr. Ochen William and the entire EID unit staff especially sister Ejang
Dorothy for their unconditional support and willingness to help me get all the relevant information necessary to make this research successful. I also extend special thanks and appreciation to all the research participants who accepted to be part of this study for the priceless time and information they availed me.
Special acknowledgments go to all my fellow MPH classmates 2009-2011
I would also like to thank my parents, Micheal and Rose Okalo, my sister, her husband Coen
Van der Heijden, and my son Haxton Opio for the constant encouragement coupled with emotional and spiritual support.
Above all, I wish to thank the Almighty God for making this possible.
iii TABLE OF CONTENTS
DECLARATION ...... i
DEDICATION ...... ii
ACKNOWLEDGEMENTS ...... iii
LISTS OF TABLES ...... vii
LIST OF FIGURES ...... viii
LIST OF ACRONYMS ...... ix
LIST OF OPERATIONAL DEFINITIONS ...... x
ABSTRACT ...... i
CHAPTER 1: INTRODUCTION ...... 1
1.1 Introduction ...... 1
1.2 Background ...... 1
1.3 Statement of the problem ...... 3
1.4 Study objectives ...... 5
1.5 Research questions ...... 5
1.6 Justification of the study ...... 6
1.7 Conceptual framework ...... 7
1.6.1 Brief narrative of the conceptual framework ...... 7
1.8 Conclusion ...... 8
CHAPTER 2: LITERATURE REVIEW ...... 9
2.1 Introduction ...... 9
2.2 Magnitude of loss to follow up in Uganda and sub Saharan Africa ...... 9
2.3 Factors influencing loss to follow up of HIV-exposed infants ...... 11
2.3.1 Predisposing factors ...... 11 iv 2.3.2 Enabling factors ...... 14
2.3.3 Need factors ...... 17
3.1 Introduction ...... 19
3.2 Study design ...... 19
3.3 Study setting ...... 19
3.4 Study population...... 19
3.5 Eligibility criteria ...... 20
3.5.1 Inclusion criteria ...... 20
3.5.2 Exclusion criteria ...... 20
3.6 Sample size determination ...... 21
3.6.1 Sampling procedure ...... 21
3.6 Measurements ...... 21
3.6.1 Independent variables ...... 22
3.6.2 Dependant variable ...... 22
3.7 Data collection, management and analysis ...... 22
3.7.1 Data collection ...... 22
3.7.2 Data Management ...... 23
3.7.3 Data Analysis ...... 23
3.8. Quality control ...... 23
3.9 Ethical issues ...... 23
3.10 Dissemination ...... 24 v CHAPTER 4: RESULTS...... 25
4.1 Introduction ...... 25
4.2 Background characteristics of the respondents ...... 25
4.3 Descriptive Analyses on respondent key Variables and Indicators ...... 26
4.4 Descriptive Analyses on key infant Variables and Indicators...... 27
4.5 Association between the different factors and the rate of loss to follow up ...... 30
4.6 Examining and Evaluating factors that affect the overall loss to follow up ...... 37
CHAPTER 5: DISCUSSION OF THE RESULTS ...... 42
5.1 Introduction ...... 42
5.2 The prevalence of LTFU at Lira regional referral hospital ...... 42
5.3 Predisposing, enabling and need factors associated with LTFU at Lira RRH ...... 44
5.4 Study strength ...... 49
5.5 Limitations of the study ...... 50
CHAPTER 6: CONCLUSIONS AND RECOMMENDATIONS ...... 51
6.1 Introduction ...... 51
6.2 Conclusion ...... 51
6.3 Recommendations ...... 51
REFERENCES ...... 53
APPENDIX 1: TABLE SHOWING WHO GUIDELINES ADOPTED BY UGANDA’S MINISTRY OF HEALTH ON PMTCT/EID IMPLEMENTATION ...... 62
APPENDIX 2: CONSENT FORM FOR PARTICIPANTS INVOLVED IN THE STUDY 63
APPENDIX 3:SEMI-STRUCTURED QUESTIONNAIRE ...... 64
APPENDIX 4: PERMISSION TO CONDUCT RESEARCH ...... 72
vi
LISTS OF TABLES
Table 1: Characteristics of the respondents ...... 25
Table 2: Description of key variables ...... Error! Bookmark not defined.
Table 3: Summary of PCR attendance, HIV results and loss to follow up across the three test. . 28
Table 4: Feeding options between each of the three tests ...... 30
Table 5: Evaluation analysis between loss to follow up by the 2nd PCR and each of the factors.
Note: All values have been adjusted to three (3) decimal places...... 31
Table 6: Evaluation analysis between loss to follow up by the final rapid test and each of the factors (Note: All values have been adjusted to three (3) decimal places.) ...... 34
Table 7: Evaluation analysis between the overall loss to follow up and each of the following factors (Note: All values have been adjusted to three (3) decimal places.) ...... 37
Table 8: Multiple response analysis showing reasons for loss to follow up from EID care by infant- caretaker pairs...... 40
vii
LIST OF FIGURES
Figure 1: Conceptual framework adopted from Andersen and Newman framework of health
services utilization to demonstrate interaction of factors associated with loss to follow up of
HIV-exposed infants-caretaker pairs in EID care ...... 7
Figure 2: Flow chart showing the loss to follow up from 1st PCR to the final rapid test ...... 29
viii LIST OF ACRONYMS
AIDS - Acquired immune Deficiency syndrome
ARVs - Antiretroviral drugs
ART - Antiretroviral therapy
CHW - Community Health Worker
CPHL - Central Public Health Laboratory
DBS - Dry Blood Spot
EID - Early Infant Diagnosis
EMTCT - Elimination of Mother to Child Transmission
FSG - Family Support Group
HAART - Highly Active Anti Retroviral Therapy
HIV - Human Immunodeficiency Virus
KMCC - Knowledge Management and Communication Capacity (KMCC) Initiative
LFTP - Loss to follow up
FU - Followed up
LRRH - Lira Regional Referral Hospital
MCH - Maternal Child Health
MOH - Ministry of Health
MTCT - Mother to Child Transmission
RCQHC - Regional Centre for Quality of Health Care
PCR - Polymerase Chain Reaction
PMTCT - Prevention of Mother to Child Transmission of HIV
PI - Principal Investigator
UAC - Uganda AIDS Commission
UNAIDS - Joint United Nations Programme on HIV/AIDS
VHT - Village Health Team
WHO - World Health Organization
ix LIST OF OPERATIONAL DEFINITIONS
Loss to follow up is the absence of the HIV Exposed Infant- caretaker pairs from the EID clinic for more than 3 consecutive months from the last scheduled appointment date, with no evidence of death, discharge from the clinic with negative or positive results or being transferred out to
another HIV clinic.
Caretaker in this study is defined as the biological mother or guardian of an HIV exposed infant.
x
ABSTRACT
Loss to follow up (LTFU) of HIV-exposed infants remains a major barrier to controlling
HIV/AIDS in the Elimination of Mother To Child Transmission of HIV/Early Infant Diagnosis
(EMTCT/EID) programmes in Uganda. Uganda‟s Ministry of Health reported 60% Loss to
Follow up (LTFP) of mother baby pairs in 2013 at 166 sites countrywide, however the extent and
reasons for the LTFP in Lira District are unknown. Some studies have indicated that the northern
region as a whole has an estimated LTFU of approximately 53%.
This study aimed to assess the extent and factors associated with LTFU of HIV-exposed Infant-
caretaker pairs enrolled in the EID clinic at Lira Regional Referral Hospital (LRRH) from
January 2010 to June 2012 so as to guide policy formulation on curbing LTFU and ensuring of
retention of mother baby pairs in EMTCT/EID care.
A cross sectional study was conducted among 280 HIV-exposed infant- caretaker pairs who were
randomly selected from the EID clinic register, traced and interviewed using a semi-structured
questionnaire on key variables of predisposing, enabling and need factors associated with LTFU.
At uni-variable and bi-variable analysis, independent variables with p values <=0.05 were
selected for multivariable Logistic regression analysis. Adjusted Odds ratio was used to measure
the strength of this association. The results indicated loss to follow up rates by 2nd PCR as 32.8%
and 60% between the 2nd PCR and final rapid HIV test. The overall loss to follow up over the study period was 51.8%.
At multivariable analysis levels, Belonging to a FSG; [Adjusted OR 0.477; CI. (0.268-0.847)]
nd and between 2 PCR & Final Rapid test [AOR0.461; CI0.260-0.817]; Having contact
i nd information at the Health Facility; AOR 0.350; CI [0.197-0.622] between 2 PCR & final rapid
test; AOR 0.332; CI [0.187-0.591] at overall LTFU; Delivery at health Facility AOR 0.263; CI
[0.08-0.863] were associated with reduction in LTFU wheras if babies were perceived to be healthier AOR 3.807; CI[1.231-11.770] P-value 0.02 between 2nd PCR and final rapid test and
AOR 4.750; CI [1.455-15.507], PV 0.010 at overall LTFU and younger maternal ages (18 to 24)
than older maternal ages [AOR 2.851; CI 1.158-7.021] between 2nd PCR and final rapid test and
AOR 2.762; CI [1.117-6.834 overall LTFU].
In conclusion, at Lira Regional Referral Hospital Early Infant Diagnosis clinic there is 51% overall Loss to follow up of infant mother pairs, but most noticeable between the 2nd PCR and final Rapid test at 60%, a clear indication that final HIV status of many HIV exposed babies are
unknown hence impacting on care and treatment.
The overall recommendation from the study for Lira Regional Referral Hospital is to revise community and EID clinic delivery of services. Empower & respond to the broader health &
social needs of younger mothers, encourage them to enroll into family support groups to reduce stigma and support disclosure; as well as encourage all mothers in care to provide telephone
contacts and physical addresses to ensure follow up for those defaulting. Sensitize community on
relevance of continued testing and counseling even when the babies seem healthier and previous
tests are negative. Synchronize the appointment dates of infant-caretaker pairs so as to minimize
frequency of visits.
ii
CHAPTER 1: INTRODUCTION
1.1 Introduction
This chapter discusses the background to the study, statement of the problem, objectives of the study, research problem, and justification of the study as well as the conceptual framework.
1.2 Background
The Ugandan Ministry of Health defines loss to follow up (LTFU) as failure of HIV exposed
infant caretaker pair to attend the HIV clinic for more than 3 consecutive months from the last
scheduled appointment date, with no evidence of death, discharge from the clinic with negative or positive results or being transferred out to another HIV clinic.
The Loss to follow up of HIV exposed children denies them access to HIV care and support
hence posing immense implications. Studies have showed that HIV is substantially associated
with increased morbidity and mortality for these children (Newel et al., 2004). Identification and
effective follow up of HIV exposed and infected children is a major challenge faced by health
workers in Elimination of Mother to Child Transmission (EMTCT) and Early Infant Diagnosis
(EID) programs and unless a systematic structured plan that includes early testing at 6 weeks is in place, up to 85% of HIV exposed infants are reported to be lost to follow up from clinics
providing services for PMTCT by one year of age, with 75-80% already lost to follow up at 6 months of age (Patton et al., 2007).
It is estimated that globally the number of children exposed to Human Immunodeficiency Virus
(HIV) annually is at 420,000 with mortality of untreated infants approaching 50% by 2 years of
age (WHO and UNAIDS,2007). EMTCT/EID programmes in south and sub-Saharan Africa
1 have been reported to experience significant loss to follow‐up. A meta-analysis of studies
conducted in South Africa published in 2004 by Stevens et al. (2008) showed that over a 24-
month period, 60% of all infants were lost to follow-up by 6 weeks of age and 85% by 12
months, suggesting that one reason HIV-infected infants are not receiving timely access to ART
is because most are not routinely accessing Mother-Child Health (MCH) services early and HIV
infection is not detected in a timely manner. The Unite for Children, Unite against AIDS (2009)
briefing Paper also estimates that in 2007 alone about 270,000 children, a majority of whom
were in sub-Saharan Africa and less than five years had died of HIV related conditions.
In the case of Uganda and in particular, findings from the national pediatric HIV support
supervision conducted at 166 sites in 2013 showed that about 60% of HIV exposed infants were
either lost to follow up or did not have final outcomes at 18months. According to Ahoua et al.,
(2010), the Northern region of Uganda where Lira District is situated a high loss to follow up of
caretaker-infant pairs of up to 53% was reported. The study further cited reasons for dropout as
infant death and lack of understanding of importance of follow-up. However, the situation in Lira
District is unknown and neither are the reasons for this high loss to follow up.
Early Infant Diagnosis (EID) services were introduced at Lira Regional Referral Hospital
(LRRH) in 2006 as part of the national PMTCT/EID scale up by Ministry of Health (MOH).
MOH considers an infant HIV exposed on three grounds that is; if the mother‟s Maternal Child
Health (MCH) passport indicates that the mother is HIV positive; if a breastfeeding mother with
an unknown HIV status gets a rapid test performed on her and indicates positive and lastly if
unable to test mother, a rapid test is performed on the infant and it turns out positive.
2 For such an infant considered HIV exposed, the first Dry Blood Spot – Polymerase Chain
Reaction (DBS-PCR) test is then performed usually at 6weeks as part of the enrollment exercise
into EID care awaiting a second DBS-PCR after 6 weeks‟ cessation of breastfeeding and a final
rapid HIV test at 18 months to ascertain the final HIV status of the infant (Ministry of Health,
2012). Other interventions that such an infant benefit from the EID clinic include: clinical assessment of infant, growth, development monitoring, immunization, co-trimaxazole and Anti-
Retroviral Viral (ARV) prophylaxis, and counseling on feeding advice over the 18 to 24 month period.
To maximize identification, registration and testing of HIV-exposed infants at Lira Regional
Referal Hospital, all health facility staffs are instructed to refer all HIV positive mother and their babies identified from Post Natal Care (PNC) and various other service delivery points to the
EID care point. This is aimed at making it easier for the infant-mother pair to receive HIV/AIDS
care and treatment all in one place.
Despite all the above, EMTCT services at Lira Regional Referal Hospital continue to experience
challenges of lack of test kits, low male involvement, low couple testing, limited numbers of
health workers trained and loss to follow up of HIV exposed infants.
1.3 Statement of the problem
The loss to follow up of HIV-exposed infant/caretaker pairs denies them access to HIV care and
support leading to HIV/AIDS related morbidity and mortality for these children (Newel et al.,
2004). Northern Uganda was reported to generally have an estimated loss to follow up of 53%
(Ahoua et al., 2010) but the magnitude and associated factors for loss to follow up of the HIV-
exposed infant/caretaker pairs are unknown for Lira District. According to the Uganda‟s AIDS
3 Control Programmme (ACP), approximately 5.2% of Uganda‟s annual total population are
pregnant and of these 7.3% of all these pregnant women are estimated to be HIV infected
(Ministry of Health, 2012). Furthermore, a national pediatric HIV support supervision by the
Ministry of Health at 166 sites in 2013 showed that about 70% of HIV exposed infants were either lost to follow-up or did not have final outcomes at 18 months despite having an appointment.
On the other hand, monitoring and close follow up of HIV-exposed infants in EID care offers an opportunity for the HIV exposed infant to have clinical assessment, growth & development monitoring, immunization, Co-trimaxazole prophylaxis to prevent opportunistic infections (OI), and access ARV prophylaxis. Other benefits for follow up include, counseling on feeding advice, determination of final HIV status and referral to care and treatment of HIV-exposed infants and young children.
The eventual effects of loss to follow up of HIV Exposed Infants in EID care, coupled with limited knowledge about the magnitude and the associated factors, impacts on Lira and Uganda‟s
gains in the fight against Mother to Child Transmission of HIV for the past years and also the country‟s commitment at meeting the Sustainable Development Goals (Goal 3; seeks to ensure health and well-being for all, at every stage of life). Therefore, the need to explore the factors associated with loss to follow up of HIV-exposed infant/caretaker pairs is crucial so as to suggest
appropriate measures to mitigate the situation.
4 1.3 Study objectives
1.3.1 General objective: To assess the factors associated with loss to follow up of HIV-exposed infant/caretaker pairs enrolled in the Early Infant Diagnosis clinic at Lira Regional Referral
Hospital from January 2010 to June 2012.
1.3.2 Specific objectives
• To establish the proportion of HIV-exposed infant/caretaker pairs enrolled in the EID
clinic at Lira Regional Referral Hospital who were LTFU from January 2010 to June
2012.
• To determine the pre-disposing factors associated with LTFU of HIV-exposed
infant/caretaker pairs enrolled in EID at Lira Regional Referral Hospital from January
2010 to June 2012:
• To determine the enabling factors associated with LTFU of HIV-exposed infant/ caretaker
pairs enrolled in EID clinic at Lira Regional Referral Hospital from January 2010 to June
2012:
• To determine the need factors associated with LTFU of HIV-exposed infant/ caretaker
pairs enrolled in EID clinic at Lira Regional Referral Hospital from January 2010 to June
2012:
1.4 Research questions
• What proportion of HIV-exposed infant/caretaker pairs enrolled in the EID clinic at Lira
Regional Referral Hospital from January 2010 to June 2012 are LTFU?
5 • What are the predisposing factors associated with LTFU of HIV-exposed infant/caretaker
pairs enrolled in EID clinic at Lira Regional Referral Hospital from January 2010 to June
2012?
• What are the enabling factors associated with LTFU of HIV-exposed infant/caretaker pairs
enrolled in the EID clinic at Lira Regional Referral Hospital from January 2010 to June
2012?
• What are the need factors associated with LTFU of HIV-exposed infant/caretaker pairs
enrolled in the EID clinic at Lira Regional Referral Hospital from January 2010 to June
2012?
1.5 Justification of the study
The loss to follow up of HIV exposed infant /caretaker pairs in EMTCT/EID care programmes is
an important measure/indicator of programmatic performance. It is estimated that up to 30% of
untreated HIV-infected children die before 12 months and more than 50% die before 2 years of
age (Cook et al., 2011), implying the urgent need for identifying and enrolling them into care and
treatment programmes.
Owing to the identified challenges stated in the statement of the problem, that is increased HIV
/AIDS related morbidity and mortality, it is expected that results from this study will inform policy and guide the development of strategies by Lira Regional Referral Hospital and their funding partners to curb LTFU, as well as interventions in the improvement of EMTCT/EID in lira and other districts, thus improving retention of HIV Exposed Infants and their caretakers in the EID care at Lira Regional Referal Hospital.
6 1.6 Conceptual framework
Figure 1: Conceptual framework adopted from Andersen and Newman framework of health services utilization to demonstrate interaction of factors associated with loss to follow up of HIV-exposed infants-caretaker pairs in EID care.
Enabling factor
- Distance to the health facility
-Disclosure to partner
-Telephone number in facility records
Predisposing factors
-Caretaker level of education Increased HIV/AIDS
Loss to follow up of HIV exposed related morbidity and -Occupation of caretaker infants’ caretaker in EID care. mortality - Marital Status
-Family support group member Need factors
-Age of caretaker - Perceived importance of ANC attendance
- Perceived importance of delivery in a hospital
- Perceived importance of ARV treatment in ANC
- Health status of the baby
1.6.1 Brief narrative of the conceptual framework
This conceptual framework adapted from Andersen and Newman (1995) on health service
utilization demonstrates three different characteristics that may facilitate or impede follow up of
HIV-exposed infant/caretaker pairs in EID care at Lira Regional Referral Hospital.
The characteristics are considered to be either predisposing, enabling or need factors and may act
independently or as a group in influencing access to and utilization of EID services, for example,
the caretakers age, level of education, occupation, marital status, and family support group
7 member may pre-dispose health seeking behavior for follow up of HIV-exposed infant/caretaker
pairs, similarly are the perceived importance of ANC attendance, perceived importance of
delivery in a hospital, perceived importance of ARV treatment in ANC and health status of the
baby which may enhance the need for a caretaker to seek and adhere to EID services to enable follow up of an HIV-exposed infant.
Furthermore, income, distance to a health facility, location of an EID clinic and transport costs are among other factors that can enable follow up of HIV-exposed infants in EID clinic. The other factors include disclosure of one‟s HIV status to a partner and presence of telephone numbers in the facility records as well as presence of other facilities.
1.7 Conclusion
Chapter one introduced the study and the following chapters will develop as follows: Chapter two will be about the literature review; chapter three will concentrate on the research methodology; chapters four and five will be about presenting and discussing the study findings while chapter six will be the concluding chapter.
8
CHAPTER 2: LITERATURE REVIEW
2.1 Introduction
This chapter presents any available literature on loss to follow up of HIV-exposed infant-caretaker pairs that have been published. In this section, the discussion will be about Magnitude of loss to follow up in sub Saharan Africa and Uganda, factors influencing loss to follow up of HIV-exposed infants-caretaker pairs before a chapter conclusion is given.
2.2 Magnitude of loss to follow up in Uganda and sub Saharan Africa
Loss to follow-up (LTFU) remains a major challenge in HIV care programmes across the world. The
Uganda AIDS Indicator Survey (2011), notes that HIV prevalence among children is less than one percent (0.7%) and from a mathematical model by MOH estimation and projections group (2010), quoted in the NSP 2011/12-2014/15, improvement in PMTCT uptake will lead to a decline in HIV prevalence among children less than 15 years from 25,746 in 2007 to 24,142 in 2009 hence a 6.2% reduction. Children must therefore be diagnosed early enough to reduce this high mortality which can be achieved through programmes such as Elimination of Mother to Child Transmission (EMTCT).
The HIV prevalence in Uganda is reportedly rising again after a downward trend from 5% in 2000 to the
current 7.3% UAC (2015). Consequentially, HIV prevalence is reportedly high among women (8.3%)
than men (6.1%), of which heterosexually transmitted HIV accounts for 80% while Mother to Child
Transmission (MTCT) accounts for 20% in this country (UAIS, 2011; MOH, 2012). Subsequently, mother to child transmission of HIV is estimated at 30% in babies born to HIV positive mothers who did
not receive any HIV care and accounts for more than 95% of HIV infection in children who are less than
5 years (MOH, 2012).
9 A cross-sectional survey of 230 HIV-positive pregnant women in Mali found out that 53% of HIV-
positive women fell in the LTFU category (Mute et al., 2011). Other studies have also raised this issue
in their findings. Indeed, a systematic review conducted by Kalembo et al. (2013) representing 8 sub
Saharan countries put estimates of the rates of LTFU of infant-caretaker pairs from 19% to 89.4%.
Another systematic review of 25 studies (mostly from sub-Saharan Africa) conducted by Sibanda et al.(2013) to determine the magnitude of LTFU of infant-caretaker pairs, revealed unacceptably high
LTFU of HIV-exposed infants at several points in the PMTCT care cascade. The LTFU of pregnant
HIV-positive women between ANC registration and delivery ranged from 10.9% to 68.1% and LTFU of infants within 3 months of delivery ranged between 4.8% –75%, while children lost after HIV rapid testing ranged from between 35.9% and 57.6%.
Loss to follow up of infant-caretaker pairs, nationally in Uganda has been estimated at 60% and in northern Uganda it stands at 53% (Ahoua et al., 2010). Follow-up in EMTCT/EID care ensures identification of HIV-exposed infants, the timely initiation on treatment and care, but also to avoid postpartum HIV transmission and improve overall infant health outcomes. It also ensures administration of ARV treatment to mothers identified as HIV positive and their exposed infants, provision of continuous post-test counseling and support for exclusive breastfeeding for 6 months; continuous follow
up of infant-caretaker pairs through routine health services including provision of Cotrimoxazole
Prophylaxis for opportunistic infections for infant and mother; and referral to community-based
psychosocial support and home-based care services (Kalembo et al., 2013).
10 2.3 Factors influencing loss to follow up of HIV-exposed infants
EMTCT/EID as a health intervention is influenced by predisposing, enabling and need factors.
2.2.1 Predisposing factors
Predisposing factors make infant-caretaker pairs liable or inclined to loss to follow up in EID care.
Studies by Loannidis et al.(1999) on predictors and the impact of losses to follow-up of infants born in a large cohort of delivering women in urban Malawi reported less educated parents as more likely to be cases of loss to follow-up. Also in Kenya, a study by Moth et al. (2005) found out that the parents of
HIV-exposed infants are more prone to loss to follow-up situations due to either lower maternal education levels or lack of maternal secondary education as there was non-adherence to the drug
Nevirapine (NVP).
There are reasons such as work and childcare responsibilities that were cited as common reasons given by HIV positive clients and caretakers responsible for their failure to return to clinics (Geng et al.,
2007). In resource-limited settings, accessing health care is often only one competing need among other
urgent priorities, and social responsibilities to work (farm) and children may take precedent over
personal health. These factors, furthermore, may affect women more than men who are often the
caretakers of these HIV-exposed infants. Other factors influencing loss to follow up have been reported
as having an independent maternal source of income through formal employment or agriculture (Cook et
al., 2011; Gamaliel, 2012).
Social stigmatization was another of the reasons that affected LTFU as caretakers/mothers were unlikely
to disclose their children‟s status to enable follow up in a study carried out in Malawi (Thorsen et al.,
2008) and this was as a result of how the PMTCT and EID programmes were implemented at the health
11 centers and the community, especially in the routine HIV testing, six months exclusive breastfeeding,
home visits and location of the EMTCT/EID programme.
Studies by Hassan et al.(2012) and Kim et al.(2012) have revealed that younger maternal age
significantly contribute to LTFU cases with mothers younger than 27.2 years compared to 32.1(27.2 vs.
30.1 years). In (Hassan et al., 2012), the study in rural Kenya discovered the failure of caretakers to bring back their babies for EID services while in (Kim et al., 2012), it was reported that maternal age of
at least 20 years or below, along with being ART eligible but not on ART, were associated with failure
to complete the EMTCT cascade hence loss to follow up from any EID services.
Health workers in a study in rural Kenya felt that EID knowledge was not adequately covered during
ANC and PMTCT training sessions and were instead picking up information from other sources (Hassan
et al., 2012). The health care workers further noted that they were not sure of the number, exact time
points or type of tests to be done for EID hence referrals of care takers to colleagues to get further
information which eventually led to LTFU of HIV-exposed babies. It was further revealed that healthier
children were unable to be linked to ART programmes especially if their first Dry Blood Spot (DBS)
results were negative. This made the caretakers assume that the children were negative and were
therefore more likely not to bring them back unless their children developed an acute illness and just as
adults get affected by structural challenges, most caretakers may not perceive asymptomatic children as
requiring medical care and there is always a need to save resources and time (Rosen and Fox, 2011).
However on the other hand, a high proportion of children with advanced clinical stage of disease were found to access and remain in HIV care and their caretakers were likely to bring back these children if
12 they themselves fell sick. It is also worth pointing out that in cases of LTFU, some of the reasons for dropout have included fear of positive HIV result, chronic illness, stigma and discrimination,
unsupportive spouse and inability to pay for the service (Moth et al., 2015). Furthermore lack of appropriate social support structures to facilitate disclosure and handle social stigma was noted by
Hassan et al. (2012) as contributing to a general drop out of baby-mother pairs in EID care in Kenya.
The study further noted that some caregivers reported being motivated by their partners and social support groups to bring their children back for care. Healthier children were most likely to get involved in the loss to follow up cases according to Hassan et al. (2012) and Mugglin et al. (2013).
Furthermore, lack of adequate knowledge of the need for EID or the location of EID services after standard referral of HIV-exposed infants and their mothers/caretakers were cited among reasons offered
by health facility officials associated with LTFU in a qualitative study carried out in rural Mozambique
by Ciampa et al.(2012).
Finlayson & Downe (2013) in their study on why women do not use antenatal care services in low and
medium income countries discovered that there may be a misalignment between current antenatal care
provision and the social and cultural context of some women in Low and Middle Income Countries.
Antenatal care provision that is theoretically and contextually at odds with local contextual beliefs and
experiences is likely to be underused, especially when attendance generates increased personal risks of
lost family resources or physical danger during travel, when the promised care is not delivered because
of resource constraints, and when women experience covert or overt abuse in care settings.
13 2.2.2 Enabling factors
Loss to follow up of infant-caretaker pairs may be influenced or minimized by several enabling factors.
Major bottlenecks to effective follow up of HIV-exposed/ positive children in Uganda have emerged
such as shortages of EMTCT/EID staff, lack of staff motivation, internal movement or rotation of staff
between departments, lack of skills and training of staff in effective PMTCT implementation.
Nuwagaba-Biribonwoha et al.(2010) notes that shortage of PMTCT staff (Counselors, Midwives and
Laboratory personnel) is a problem in all hospitals based on the sample of five hospitals selected in their
study on Introducing a multisite programme for early diagnosis of HIV infection among HIV-exposed
infants in Tanzania. In addition, they found out that, healthcare workers needed motivation to deal with
the increased workload associated with the PMTCT programme, although some managers within these
institutions thought the health workers‟ wish for additional motivation was unreasonable.
The need for motivation stems from false expectations of the rewards for working on the PMTCT programme. Therefore maintaining morale among staff had been a challenge. Rotating staff between departments also did pose a regular staff re-training challenge. Among the key informants interviewed, it was noted that doctors needed more skills and training in working with ARV drugs in pregnancy, particularly HAART (Nuwagaba-Biribonwoha et al. (2007). Studies such as by Nuwagaba-Biribonwoha et al.(2007) and Jones et al.(2010) conducted in Uganda and India respectively noted that women considered disclosing their HIV status to their partners as being particularly difficult and compounded by a lack of male partner involvement in PMTCT activities including EID hence affecting compliance.
14 In Bwirire et al.(2008)‟s study in Malawi, it was revealed that fear of HIV-1 test; stigma and disclosure
of HIV-1 status were main reasons for LTFU in PMTCT/EID programmes. Mothers‟ fear of stigma,
discrimination, household conflict and even divorce on disclosure of HIV status coupled with lack of
support from husbands who do not want to undergo HIV testing were some of the reasons cited as
leading to loss to follow up situations. It has also been documented that there are instances where
mothers feared the response of their families, believing that they will be ignored, isolated, and openly disgraced and blamed when they disclosed their HIV status. 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.
It is worth noting that caretakers/mothers are reported to be worried of fear of broken confidentiality
from the health care workers who live in the same community especially where there is considerable
concern that disclosure may result in a negative impact on the child‟s emotional well being (De-Baets et
al., 2008; Rahangdale et al., 2010). A study in Zambia revealed that women feared the reactions of a
partner or husband (Kalembo and Zgambo et al., 2012).
On the other hand, using a tracking method that included direct accompaniment of mothers by
community health workers as demonstrated by the Tiganthe study in Malawi (Ahmed et al., 2009) and active follow up by home visits (Nuwagaba-Biribonwoha et al., 2010) ensured reduction in LTFU rates.
This particular study demonstrated that active follow up through home visits of infants whose tests had
turned out positive minimized LTFU to 32% compared with 48% among the HIV-negative infants. In a
study carried out in Uganda (Namukwaya et al., 2011) at Mulago National Referral Hospital it was
15 revealed that despite the health facility having in place an active telephone tracking system to reach
mothers, LTFU was at 40% (50% of the caretakers had telephones).
It is significant therefore to have records of the caretakers‟ telephone contacts at the health facility where
EID/PMTCT/EMTCT programmes are being run to ensure ease of follow up by the relevant health officials. This point is further highlighted in a study conducted by Nlend et al. (2012) in Cameroon on
“early outcomes of HIV-exposed children in the first district-wide programme using extended regimens for the prevention of mother-to-child transmission of HIV”. Availability of telephone contacts in the health facility records for purposes of follow up was reported to minimize loss to follow up cases. This study further reported a LTFU of 17% (90% of clients had mobile phones).
In Cook et al. (2011)‟study on predictors on follow up for EID services, it was reported that greater distance from the health facility was a significant factor contributing to follow up for EID services at
(OR= 2.14; 95% CI, 1.01-4.51). It was suggested that this was as a result of having a “decreased fear of social stigma when seeking HIV care outside their own community. However this study finding was
contradictory to earlier findings by Bwirire et al. (2008) who found that inability to afford transport
costs related to long distances undertaken to get to the hospital was a significant factor in loss to follow
up of infants and caretakers. Therefore, there is a call for a renewed appreciation for primary health care
in general as it remains crucial for a successful decentralization of pediatric HIV/AIDS-treatment
programmes to rural Africa (De Baets et al., 2008).
In a retrospective cohort study by Kalembo et al. (2013) on the association between Male Partner
Involvement and the Uptake of Prevention of Mother-to-Child Transmission of HIV (PMTCT)
Interventions in Mwanza District, Malawi, it was discovered that male partner involvement increases the
16 uptake of some PMTCT interventions by HIV positive women. Multi-strategic, culturally tailored public
health care models are needed to increase the rate of male partner involvement in the program.
2.2.3 Need factors
The perceived need factors that motivate and compel action towards minimizing loss to follow up of
HIV-exposed infants and caretakers have been reported as perceived need for having an Ante Natal Care
done.
Manzi et al. (2005) notes that ANC attendances were reported high but over 87% of deliveries were said
to take place in peripheral sites where PMTCT/EMTCT and EID services were not available. In a study
conducted in Uganda by Nuwagaba- Biribonahwa et al. (2007) findings revealed that 71 (95.9%) of
HIV-1-positive women did not return for an institutional delivery and the situation was similar in other
sub-Saharan countries like Malawi.
According to the Uganda Demographic Health Survey (2011) report, the proportion of mothers in
Uganda who receive ANC from a skilled provider is almost universal at 95 percent but fewer health
facility deliveries occur at 58% as compared to about 42% of deliveries being home delivers. Merdekios
& Adedimeji (2011) in a study to assess the effectiveness of interventions to prevent mother-to-child
transmission of HIV-1 in Southern Ethiopia, it was noted that the choice of delivery location is thought
to be influenced by culture, poor socio-economic status, and fears of the stigma associated with an HIV-
1-positive status. That is not all, in a study by Turan et al. (2012) conducted in rural Kenya about the
role of HIV-related stigma in utilization of skilled childbirth services in rural Kenya, the findings were
that hospital deliveries were stigmatized against and associated with mothers with complications and
those mothers who were HIV positive.
17
2.3 Conclusion
This chapter attempted to discuss available literature on loss to follow up of HIV-exposed infant- caretaker pairs highlighting magnitude of loss to follow up in sub Saharan Africa and Uganda in particular and those factors that have been revealed to influence loss to follow up of HIV-exposed infants and their caretakers. The next chapter is about the methodology employed in this study.
18 CHAPTER 3: METHODOLOGY
3.1 Introduction
This chapter discusses the methodology used for the study. Herein, is the study design, study setting, study population, eligibility criteria, sample size selection, data collection, management and analysis as
well as ethical considerations and data dissemination.
3.2 Study design
This was a cross sectional quantitative study conducted among HIV-exposed infant-caretaker pairs that
were enrolled in EID clinic at Lira Regional Referral Hospital from January 2010 to June 2012.
3.3 Study setting
The study setting was Lira Regional Referral Hospital EID clinic.This public hospital located in
northern Uganda has a bed capacity of 415, serving over 2.5 million people in the central north districts
of Lira, Apac, Dokolo, Amolatar, Oyam, Otuke, Kole and Alebtong plus neighboring districts of Abim,
Kotido, Pader, Kaberamaido, Amuria and Kiryandongo. A fully-fledged Regional Referral hospital in
the region, it boosts of a number of expertise and resources compared to the lower health facilities. The
presence of HIV exposed infant-caretaker pairs within Lira Municipality and the surrounding sub
counties of Erute South and Erute North grounded the research study in this location.
3.4 Study population
The study population for the research consisted of HIV-exposed infant-caretaker pairs that were enrolled
in the EID clinic at LRRH from January 2010 to June 2012.
19 3.5 Eligibility criteria
3.5.1 Inclusion criteria
• HIV exposed infants aged from 6 weeks and above enrolled in EID care in January 2010.
• HIV-exposed infant caretaker pairs enrolled in EID care between January 2010 and June 2012.
Mothers found to be under the age of 18 years were considered emancipated minors as per the
UDHS, 2011 and thus interviewed using the same tools.
• HIV-exposed infants caretaker pairs enrolled in EID care, with complete patient data captured in
the EID register.
• Participants residing within Lira Municipality and the surrounding sub counties of Erute South
and Erute North.
• Caretakers of the HIV exposed infants who provided Informed consent.
3.5.2 Exclusion criteria
• Participants (HIV exposed infants-caretakers pairs) who were found to be too sick to respond to
the study inquiry;
• Participants (caretakers) of HIV-exposed infants that are not interested to participate in this
study.
• HIV exposed infant caretaker pairs who did not meet the inclusion criteria, for instance, they
were outside the study area.
20 • Participants that did not give informed consent.
3.5 Sample size determination
The sample size was calculated using the formula for a single proportion by Kish Leslie (1965)
2 2 n= Z *P*Q/d Where n = required sample size Z= 1.96 (the standard normal deviation at 95% confidence interval)
D= required precision of the estimate which is 5%.
Q= 1-P
P= 0.6, estimated prevalence of loss to follow up of mother baby pairs in Uganda (MOH 2012)
Z= 1.962*0.6 *0.29/0.052= 267 study participants 5% non-response to be calculated hence the figure of 280 participants drawn for the study.
3.5.1 Sampling procedure
The total number of 280 participants, calculated using the Kish Leslie formula were randomly selected
from the EID register, 128 of the participants were mobilized through telephone calls for a face to face interview while 52 participants were visited at the physical addresses provided in the EID register. At the time of the study 100 mothers of the HIV exposed infants while in attendance at the ART clinic on
their scheduled clinic days were approached for the face-to-face interviews
3.6 Measurements
Measurements relied on both independent and dependent variables as explained in 3.6.1 and 3.6.2 below.
21 3.6.1 Independent variables
1) The Predisposing factors included: caretaker‟s level of education, occupation, address, marital
status, belonging to a family support group and age.
2) Need factors included: Perceived importance of ANC attendance, perceived importance of delivery in a hospital and perceived importance of ARV treatment in ANC.
3) Enabling factors included: Distance to the health facility, disclosure to partner, and availability of telephone contact in the health facility records
3.6.2 Dependant variable
Loss to follow up of HIV exposed infants/caretaker in EID care. Defined as the absence from the EID
clinic for more than 3 months from the last scheduled appointment date, with no evidence of death,
discharge from the clinic with negative or positive results or being transferred out to another HIV clinic.
3.7 Data collection, management and analysis
3.7.1 Data collection
Using a quantitative data collection approach, a semi-structured questionnaire was administered to 280
study participants who met the inclusion criteria. Telephone contact and physical addreses to the
participants‟ homes were obtained from the EID register and the clinical chart registers.
Data collection was done by trained research assistants from within Lira Regional Referral Hospital. The
questionnaire was pre-tested and administered by the principal Investigator (PI) to assess its capability to
extract the required data as per the stated variables in the research objectives.
22 3.7.2 Data Management
Data collected was entered using EPIDATA and exported to STATA statistical soft ware 12 IC for analysis. Data was checked daily for completeness, edited, coded before entry in spread sheets.
3.7.3 Data Analysis
In analyzing of data, uni-variable analysis was done by summarizing variables into frequency tables and percentages for general description. In the bi-variable analysis, Odd ratios were used to measure the
strength of association. P-value ≤ 0.05 were considered of statistical significance of association between
predictors and LTFU outcome. In multi-variable analysis, independent variables with P-value of ≤ 0.05
and those strongly associated in the Anderson and Newman model of health services utilization were
selected and put into the Logistic regression which computed the adjusted odd ratios.
3.8. Quality control
In order to ensure quality of the data collected, six (6) research assistants were supervised daily. There were also call back sessions to participants in the event that someone was not reached for data collection. Spot checks were conducted to ensure proper data collection and questions asked were being
understood by the participants. The questionnaire was first sampled in order to establish the relevance
of the questions being asked.
3.9 Ethical issues
Permission to carry out the study was sought from Lira Regional Referral Hospital administration and
Makerere University School of Public Health (MakSPH), Higher Degrees and Ethics Committee of
Makerere University. Confidentiality of study participants was ensured through use of identification codes to conceal their identity.
23 3.10 Dissemination
Study findings are to be disseminated to appropriate bodies including Lira District Health Office,
College of Health Sciences, Ministry of Health and also to peer reviewed journals.
24
CHAPTER 4: RESULTS
4.1 Introduction This chapter outlines and presents the findings of this study with descriptions of the sample, key variables and associations between key variables and confounding factors that relate to LTFU at
different levels.
4.2 Background characteristics of the respondents
This section presents the distribution of the respondents‟ background characteristics.
Table 1: Characteristics of the respondents
FU n (%) LTFU n (%) Number N Variables N (%) = 145 (%) N (%) = 135 (48.2) (51.8) Relationship of infant to caretaker Mother 279 (99.6) 134 (99.3) 145 (100.0) Guardian specify 1 (0.4) 1 (0.7) 0 (0.0) Caretaker Age group 15-24 59 (21.1) 24 (17.8) 35 (24.1) 25-34 171 (61.1) 78 (57.8) 93 (64.1) 35+ 50 (17.9) 33 (24.4) 17 (11.7) Caretaker Marital Status Married 202 (72.1) 99 (73.3) 103 (71.0) Single 31 (11.1) 11 (8.2) 20 (13.8) Divorced 34 (12.1) 14 (10.4) 20 (13.8) Widowed 13 (4.6) 11 (8.2) 2 (1.4) Caretaker Level of Education None 36 (12.9) 16 (11.9) 20 (13.8) Primary 151 (53.9) 72 (53.3) 79 (54.5) O‟ level 80 (28.6) 40 (29.6) 40 (29.6) A „level 6 (2.1) 4 (3.0) 2 (1.4) Tertiary/vocational institutions 3 (1.1) 2 (1.5) 1 (0.7) University 4 (1.4) 1 (0.7) 3 (2.1) Caretaker Occupation Employed 81 (28.9) 41 (30.8) 40 (27.6) Unemployed 199 (71.1) 94 (69.6) 105 (72.4)
25 The table 1; above shows that majority (99.6%) of caretakers were the biological mothers of the babies,
61.1% were aged between 25-34 years,72.1% of the caretakers were married, 87.1% had achieved at least primary education while 72.1% had no formal employment.
4.3 Descriptive Analyses on respondent key Variables and Indicators
This section presents results from key variables and indicators that affect the rate of lost to follow up among respondents.
Table 2: Description of key respondent variables Number N FU n (%) LTFU n (%) Variables (%) N (%) = 135 (48.2) N (%) = 145 (51.8) When known to be HIV positive Before pregnancy 137 (48.9) 72 (53.3) 65 (44.8) During pregnancy 127 (45.4) 59 (43.7) 68 (46.9) After pregnancy 16 (5.7) 4 (3.0) 12 (8.3) Disclosure Yes 206 (73.6) 102 (75.6) 104 (71.7) No 74 (26.4) 33 (24.4) 42 (28.3) Disclosed to Husband 137 (48.9) 64 (62.8) 73 (70.2) Children 18 (6.4) 12 (11.8) 6 (5.8) Others 51 (18.2) 26 (25.5) 25 (24.0) Place of delivery Delivered at Health Facility 257 (91.8) 129 (95.6) 128 (88.3) Did not deliver at Health Facility 23 (8.2) 6 (4.4) 17 (11.7) ANC attendance during pregnancy Yes 276 (98.6) 133 (98.5) 143 (98.6) No 4 (1.4) 2 (1.5) 2 (1.4) Belonging to Family Support group Yes 91 (32.5) 58 (43.0) 33 (22.8) No 189 (67.5) 77 (57.0) 112 (77.2) Distance from Health facility Less than 5kms 197 (70.4) 94 (69.6) 103 (71.0) More than 5kms 83 (29.6) 41 (30.4) 42 (29.0) Telephone contact captured at facility Yes 151 (53.9) 91 (67.4) 60 (41.4) No 129 (46.1) 44 (32.6) 85 (58.6) Physical address of respondent capatured at facility Yes 267 (95.4) 128 (94.8) 139 (95.9) No 13 (4.6) 7 (5.2) 6 (4.1)
26
ARV treatment in ANC Yes 243 (86.8) 116 (85.9) 127 (87.6) No 37 (13.2) 19 (14.1) 18 (12.4) Caretaker in HIV care at facility Yes 245 (87.5) 126 (93.3) 119 (82.1) No 35 (12.5) 9 (6.7) 26 (17.9)
From the results in Table 2 above, almost half (48.9%), of the caretakers knew their sero-status before their last pregnancy with 44.8% of caretakers being LTFU, 73.6% of the caretakers disclosed their sero-
status to someone, 48.9% of the caretakertakers disclosed to their husbands of which 73% of the caretakers become LTFU. Further more, 98.6% of the mothers reported having attended ANC during their pregnancy, with majority (91.1%) delivering at a health facility, 88.3% of them being LTFU.
Caretakers attending HIV care at the facility were 87.5% with 86.8% of the mothers reported having received some kind of ARV treatment while in ANC. However important to note, is that majority
(67.5%) of the caretakers did not belong to any family support group of which 77.2% were LTFU.
4.4 Descriptive Analyses on key infant Variables and Indicators.
Number N FU n (%) LTFU n (%) Variables (%) N (%) = 135 (48.2) N (%) = 145 (51.8) Age at first PCR At 6 weeks 204 (72.9) 100 (74.1) 104 (71.7) Between 6 weeks and 3months 46 (16.4) 24 (17.8) 22 (15.2) After 3months 14 (5.0) 7 (5.2) 7 (4.8) Others specify 16 (5.71) 4 (3.0) 12 (8.3) Age at second PCR At 6 months 32 (17.4) 21 (17.2) 11 (17.7) Between 6 months to 12months 108 (58.7) 72 (59.0) 36 (58.1) > 12months 44 (23.9) 29 (23.8) 15 (24.2) Age at Final rapid test At 18months 63 (63.0) 63 (63.0) 0 (0.0) Between 18 months and 24months 28 (28.0) 28 (28.0) 0 (0.0)
27
> 24months 9 (9.0) 9 (9.0) 0 (0.0) Final result at discharge from EID clinic Negative 90 (32.1) 90 (66.7) 0 (0.0) Positive 40 (14.3) 40 (29.7) 0 (0.0) Dead 3 (1.1) 3 (2.2) 0 (0.0) Loss to follow up 145 (51.8) 0 (0.0) 145 (100.0) Transferred out 2 (0.7) 2 (1.5) 0 (0.0) Health status of child Good most of the time 260 (92.9) 121 (89.6) 139 (95.9) Not good most of the time 20 (7.1) 14 (10.4) 6 (4.1)
In the table 3 above, majority (72.9%) of the infants were brought for the 1st PCR at 6 weeks, 71.7% of them became LTFU, more than half 58.7% of the infants were returned for the second PCR test between
6 months to 12 months while 63% of the infants had their final rapid test conducted at 18 months.
The results further reveal that 92.9% of the children were reported to be in good health most of the time with 95.9 LTFU. 63% of the infants completed the final rapid test. It is also important to note that factors that may depict a high rate of loss to follow up may not necessarily be those that significantly influence it as shall be witnessed in further discussions in this chapter.
Table 4: Summary of PCR attendance, HIV results and loss to follow up across the three test.
st %age 2ND %age RAPID %age Overall %age 1 PCR PCR TEST EID (out of (out of 265) (out of (out Attendance 280) 250) of 280) Number expected 280 100 265 100 250 100 280 100
Number attended 280 100 178 67.2 100 40 135 48.2 Loss to follow up 0 0 87 32.8 150 60 145 51.8 Number that got 273 97.5 157 88.2 100 100 - - results Number positive 15 5.5 15 9.6 10 10 40 14.3 Number negative 258 94.5 142 90.5 90 90 90 32.1
28 From Table 4 and Figure2, loss to follow up rates are 32.8 % between the 1st and 2nd PCR, and 60 %
between the 2nd PCR and final rapid test respectively whereas the overall rate of lost to follow up was
51.8 %. It can also be noted that 11 (3.9%) respondents did not collect their results for the 1st PCR, 22
(12%) did not collect results for the 2nd PCR and 2 (2%) did not get their results for the final rapid test
out of all respondents who brought their children for the respective tests.
Figure 2: Flow chart showing the loss to follow up from 1st PCR to the final rapid test
All infants that tested negative, including those that did not collect their results were eligible for
subsequent tests and follow up unlike those that turned out positive and were channeled to the ART
clinic hence excluding them from the follow up sample.
1st PCR N=280 Got results =273, no results =7 #Positive =15 (sent to ART) #Negative = 258 #expected for 2nd PCR =258+7=265
2nd PCR N=178, loss to follow =87 (32.8%) 265 expected Got results =157, no results =21 at 2nd PCR #Positive =15 (sent to ART) #Negative =142 #expected for rapid test =142+21+87) 250
250 expected Rapid test at Rapid test N= 100, loss to follow up =150 (60%) Got results =100, no results =0 #positive =10 (sent to ART) # Negative=90
Total positive =40, total negative =90, #dead =3, #loss to follow up =145 (51.8%) #transferred out =2
29 In the flow diagram above, 5.5% were positive at the 1st PCR while 9.6% and 10% tested positive at the
2nd PCR and final rapid test respectively.
Furthermore, table 4 reveals that overall at the time of discharge from the clinic, 31.4% of the infants had negative results, 14.3% positive results while LTFU along the three tests was 51.8% and forms the
basis of our discussion and further analyses.
Table 2: Feeding options between each of the three tests
FEEDING OPTION 1st PCR %age 2ND PCR %age FINAL RAPID %age
Mixed feeding 4 1.4 7 4 4 4 Replacement feeding 21 7.5 9 5 2 2 Exclusive breastfeeding 255 91.1 20 11 3 3 Complementary feeding 0 0.0 128 70 80 80 Not breastfeeding 0 0.0 20 11 11 11 Total 280 184 100
In table 4, 91.1% of the respondents practiced exclusive breastfeeding between the 1st PCR and 2nd PCR
tests whereas 70% and 80% of the respondents practiced complementary feeding between the 2nd PCR
and final rapid tests respectively.
4.5 Association between the different factors and the rate of loss to follow up
This discussion is drawn from tables 5 to 7 below indicating the association between the different factors and the rate of loss to follow up between the 1st and 2nd PCR; between the 2nd PCR and the final rapid test as well as the overall loss to follow up occurrence respectively. This will provide a sense of understanding on how each of the factors as per the categories of predisposing, enabling and need factors do influence or affect the rate of loss to follow up of infant-caretaker pairs between the different stages of EID care.
30
4.5.1: Evaluating factors that affect loss to follow up between 1st PCR and 2nd PCR Table 3: Evaluation analysis between loss to follow up by the 2nd PCR and each of the factors. Note: All values have been adjusted to three (3) decimal places. Associations with lost to follow up by the 2nd PCR
LOST Crude odds ratio P-level Adjusted odds ratio P-level
(95% CI) (95% CI)
Total 87/265 (32.8) Factors n/N (%) Contact information at facility Yes 36/147 (24.5) 0.479 (0.286 - 0.801) 0.005 0.690 (0.373 - 1.275) 0.237 No 51/118 (43.2) 2.089 (1.249 - 3.494) 0.005 1 (- - ) -
ARV treatment in ANC Yes 75/233 (32.2) 0.930 (0.444 – 1.950) 0.848 2.640 (0.920 - 7.576) 0.071 No 12/32 (37.5) 1.075 (0.513 – 2.254) 0.848 1 (- - ) -
Health status of the baby Good most of the time 81/251 (32.3) 1.056 (0.392 – 2.846) 0.914 1.332 (0.414 - 4.288) 0.630 Not good most of the time 6/14 (42.9) 0.947 (0.351 – 2.553) 0.914 1 (- - ) -
ANC Attendance Yes 85/262 (32.4) 0.445 (0.062 – 3.212) 0.442 2.219 (0.220 - 22.415) 0.499 No 2/3 (66.7) 2.247 (0.311 – 16.218) 0.442 1 (- - ) -
Delivery place At Health Facility 75/243 (30.9) 0.378 (0.160 - 0.894) 0.027 0.215 (0.068 - 0.680) 0.009 Not at Health Facility 12/22 (54.6) 2.647 (1.19 – 6.263) 0.027 1 (- - ) -
31
Level of Education None 13/34 (38.2) 1.300 (0.624 - 2.702) 0.485 1.627 (0.580 - 4.568) 0.355 Primary 53/142 (37.3) 1.511 (0.903 - 2.529) 0.116 1.922 (0.945 - 3.909) 0.071 Post primary 21/89 (23.6) 0.535 (0.302 - 0.947) 0.032 1 (- - ) -
Caretaker's Occupation status Employed 24/79 (30.9) 0.909 (0.518 - 1.596) 0.739 1.296 (0.648 - 2.591) 0.463 Unemployed 63/186 (33.9) 1.100 (0.627 - 1.931) 0.739 1 (- - ) -
Marital status Married 63/193 (32.6) 1.020 (0.579 - 1.800) 0.946 1.005 (0.513 - 1.966) 0.989 Unmarried 24/72 (33.3) 0.981 (0.557 - 1.726) 0.946 1 (- - ) -
Family Support Group Member Yes 9/86 (10.5) 0.156 (0.074 - 0.330) 0.001 0.175 (0.078 - 0.389) 0.001 No 78/179 (43.6) 6.402 (3.034 - 13.590) 0.001 1 (- - ) -
Age group of caretaker 15-24 25/55 (45.5) 1.886 (1.041 - 3.415) 0.036 2.811 (0.968 - 8.159) 0.057 25-34 55/162 (34.0) 1.141 (0.677 - 1.924) 0.621 1.612 (0.626 - 4.154) 0.322 35+ 7/48 (14.6) 0.305 (0.131 - 0.710) 0.006 1 (- - ) -
Distance to Health Facility Less than 5kms 64/187 (34.2) 1.255 (0.713 - 2.210) 0.431 1.624 (0.807 - 3.267) 0.174 More than 5kms 23/78 (29.5) 0.797 (0.452 - 1.403) 0.431 1 (- - ) -
32
Caretaker in care Yes 67/232 (28.9) 0.282 (0.137 - 0.583) 0.001 0.307 (0.125 - 0.753) 0.010 No 20/33 (60.6) 3.542 (1.714 – 7.321) 0.001 1 (- - ) -
Disclosure of status To partner 43/131 (32.8) 1.029 (0.620 - 1.708) 0.911 0.826 (0.452 - 1512) 0.536 To other person 44/134 (32.8) 0.972 (0.586 - 1.612) 0.911 1 (- - ) -
Presence of other facilities Yes 14/46 (30.4) 0.930 (0.469 - 1.842) 0.835 0.871 (0.382 - 1.990) 0.744 No 73/219 (33.3) 1.075 (0.543 - 2.131) 0.835 1 (- - ) - Table 5 shows that at bi-variable analysis, factors such as having contact information at the facility [OR 0.479; CI (0.286 - 0.801) PV
0.005], level of caretaker education, delivery in a health facility, having attended at least post primary education, being a member of a
family support group, caretaker age groups of 15-24 and 35+ as well as a caretaker being in care [OR 0.282 (0.137 - 0.583) at the facility
had a p-level <= 0.05.
However, at multi-variate logistic regression (adjusted odds ratio) , factors such as delivery at the health facility [AOR 0.215(0.068-
0.68) PV 0.009], the caretaker being a member of a family support group [AOR0.175 (0.078-0.389), and caretaker in care AOR (0.307
(0.125-0.753) PV 0.010] at the facility were significant factors all with P level<= 0.02 influencing the rate of loss to follow up by the
2nd PCR while the rest of the other factors such as having contact information at the facility, having attended at least post primary
education, falling in the age group of 35+ that were significant at bi-variate analysis level did lose significance at multi-variate logistic regressioN
33
4.5.2: Evaluating factors that affect lost to follow up between 2nd PCR and the final rapid test
Table 4: Evaluation analysis between loss to follow up by the final rapid test and each of the factors (Note: All values have been adjusted to three (3) decimal places.) Associations with lost to follow up by the final rapid test LOSS Crude odds ratio p-level Adjusted odds ratio P-level (95% CI) (95% CI)
Total 150/250 (60.0) Factors n/N(%) Contact information at facility Yes 63/140 (45.0) 0.346 (0.212 - 0.564) 0.001 0.350 (0.197 - 0.622) 0.001 No 87/110 (79.1) 2.893 (1.772 - 4.724) 0.001 1 (- - ) -
ARV treatment in ANC Yes 130/221 (58.8) 0.978 (0.489 - 1.957) 0.950 1.99 (0.766 – 5.193) 0.157 No 20/29 (69.0) 1.023 (0.511 - 2.047) 0.950 1 (- - ) -
Health status of the baby Good most of the time 143/241 (59.3) 2.270 (0.877 - 5.874) 0.091 3.807 (1.231 - 11.770) 0.020 Not good most of the time: , 7/9 (77.8) 0.441 (0.170 - 1.140) 0.091 1 (- - ) -
ANC Attendance Yes 148/247 (59.9) 1.156 (0.161 - 8.326) 0.885 5.389 (0.491 - 59.106) 0.168 No 2/3 (66.7) 0.865 (0.120 - 6.228) 0.885 1 (- - ) -
Delivery place At Health Facility 133/230 (57.8) 0.379 (0.145 - 0.991) 0.048 0.263 (0.080 - 0.863) 0.028 Not at Health Facility 17/20 (85.0) 2.642 (1.009 - 6.915) 0.048 1 (- - ) -
34
Level of Education None 20/30 (66.7) 0.096 (0.542 - 2.216) 0.798 0.709 (0.274 - 1.837) 0.479 Primary 82/134 (61.2) 0.066 (0.666 - 1.708) 0.790 0.808 (0.431 - 1.516) 0.507 Post primary 48/86 (55.8) 0.889 (05040 - 1.463) 0.643 1 (- - ) -
Caretaker's Occupation status Employed 42/73 (57.5) 0.924 (0.498 - 1.714) 0.802 0.867 (0.462 - 1.627) 0.656 Unemployed 108/177 (61.0) 1.082 (0.584 - 2.007) 0.802 1 (- - ) -
Marital status Married 108/182 (59.3) 0.985 (0.583 - 1.663) 0.954 0.886 (0.479 - 1.639) 0.699 Unmarried 42/68 (61.8) 1.015 (0.601 - 1.715) 0.954 1 (- - ) -
Family Support Group Member Yes 34/78 (43.6) 0.375 (0.224 - 0.629) 0.001 0.461 (0.260 - 0.817) 0.008 No 116/172 (67.4) 2.664 (1.590 - 4.462) 0.001 1 (- - ) -
Age group of caretaker 15-24 36/51 (70.6) 1.469 (0.818 - 2.640) 0.198 2.851 (1.158 - 7.021) 0.023 25-34 97/154 (63.0) 1.385 (0.855 - 2.243) 0.186 1.960 (0.933 - 4.117) 0.076 35+ 17/45 (37.8) 0.376 (0.198 - 0.713) 0.003 1 (- - ) -
Distance to Health Facility Less than 5kms 107/178 (60.1) 1.106 (0.662 - 1.849) 0.701 1.382 (0.740 - 2.580) 0.309 More than 5kms 43/72 (59.7) 0.904 (0.541 - 1.511) 0.701 1 (- - ) -
Caretaker in care
35
Yes 123/219 (56.2) 0.299 (0.131 - 0.684) 0.004 0.387 (0.145 - 1.029) 0.057 No 27/31 (87.1) 3.348 (1.463 - 7.660) 0.004 1 (- - ) - Disclosure of status To partner 77/125 (61.6) 1.231 (0.769 - 1.970) 0.387 1.121 (0.645 - 1.945) 0.686 To other person 73/125 (58.4) 0.813 (0.508 - 1.301) 0.387 1 (- - ) - Presence of other facilities Yes 29/44 (65.9) 1.491 (0.785 - 2.833) 0.222 1.735 (0.812 - 3.705) 0.155 No 121/206 (58.7) 0.671 (0.353 - 1.274) 0.222 1 (- - ) -
At the bi-variate level,(between the 2nd PCR test and the final rapid test) the significant factors with a p level <= 0.05, highlighted in table 6 above are having contact information at the facility [OR 0.36(0.212-0.564) PV=0.001)], delivery at the health facility OR
0.379(0.145-0.991) PV 0.048 ], belonging to a family support group [OR0.375(0.224-0.629) PV 0.001], age group of the caretakers
(35+ ) [0.376(0.198-0.713) PV 0.003] and the caretaker being in HIV care at the health facility [OR 0.299 (0.131-0.684) PV0.004].
At the multi-variate analysis level, (adjusted p levels), the significant factors were having contact information at the health facility
[AOR 0.350(0.197-0.622) PV 0.001], delivery at the health facility [AOR 0.263(0.080-0.863) PV 0.028], belonging to a family
support group [AOR 0.461(0.260-0.817) PV 0.008], caretakers in the age group of 15-24 years AOR 2.851( 1.158-7.021) PV 0.023]
and the health status of the baby being good most of the time [AOR 3.87(1.231-11.770) PV 0.02]. However, factors such as ARV
adherence during ANC, ANC attendance, occupation of the caretaker among others; did not show any significance whether at bi-
variate nor multi-variate analysis levels.
36
4.6 Examining and Evaluating factors that affect the overall loss to follow up
With reference to Figure2 above, the overall rate of loss to follow up is at 51.8%. Table 7 below will examine the same factors against
the overall rate of loss to follow up.
Table 5: Evaluation analysis between the overall loss to follow up and each of the following factors (Note: All values have been adjusted to three (3) decimal places.) Associations with overall rate of loss to follow up LOSS Crude odds ratio P-level Adjusted odds ratio P-level Total 145/280 (51.8) (95% CI) (95% CI) Factors n/N(%) Contact information at facility Yes 60/151 (39.7) 0.341 (0.209 - 0.556) 0.001 0.332 (0.187 - 0.591) 0.001 No 85/129 (65.9) 2.930 (1.797 - 4.776) 0.001 1 (- - ) - ARV treatment in ANC Yes 127/243 (52.3) 1.156 (0.578 - 2.309) 0.682 2.693 (1.019 - 7.118) 0.046 No 18/37 (48.6) 0.865 (0.433 - 1.729) 0.682 1 (- - ) - Health status of the baby Good most of the time 139/260 (53.5) 2.68 (0.999 - 7.192) 0.050 4.750 (1.455 - 15.507) 0.010 Not good most of the time 6/20 (30.0) 0.373 (0.139 - 1.001) 0.050 1 (- - ) - ANC Attendance Yes 143/276 (51.8) 1.075 (0.149 - 7.742) 0.943 4.447 (0.407 - 48.594) 0.221 No 2/4 (50.0) 0.930 (0.129 - 6.697) 0.943 1 (- - ) - Delivery place At Health Facility 128/257 (49.8) 0.350 (0.134 - 0.918) 0.033 0.226 (0.069 - 0.734) 0.013 Not at Health Facility 17/23 (73.9) 2.855 (1.091 - 7.475) 0.033 1 (- - ) - Level of Education None 20/36 (55.6) 1.190 (0.589 - 2.405) 0.628 0.773 (0.300 - 1.993) 0.595
37
Primary 79/151 (52.3) 1.047 (0.654 - 1.676) 0.847 0.821 (0.438 - 1.541) 0.540 Post primary 46/93 (49.5) 0.870 (0.529 - 1.431) 0.583 1 (- - ) - Caretaker's Occupation status Employed 40/81 (49.4) 0.873 (0.521 - 1.465) 0.608 0.865 (0.461 - 1.623) 0.651 Unemployed 105/199 (52.8) 1.145 (0.683 - 1.920) 0.608 1 (- - ) - Marital status Married 103/202 (51.0) 0.892 (0.528 - 1.506) 0.668 0.822 (0.444 - 1.524) 0.534 Unmarried 42/78 (53.8) 1.121 (0.664 - 1.893) 0.668 1 (- - ) - Family Support Group Member Yes 33/91 (36.3) 0.391 (0.233 - 0.656) 0.001 0.477 (0.268 - 0.847) 0.012 No 112/189 (59.3) 2.556 (1.525 - 4.285) 0.001 1 (- - ) - Age group of caretaker 15-24 35/59 (59.3) 1.472 (0.822 - 2.635) 0.194 2.762 (1.117 - 6.834) 0.028 25-34 93/171 (54.4) 1.307 (0.808 - 2.115) 0.276 1.748 (0.831 - 3.681) 0.141 35+ 17/50 (34.0) 0.411 (0.216 - 0.779) 0.006 1 (- - ) - Distance to Health Facility Less than 5kms 103/197 (52.3) 1.070 (0.640 - 1.787) 0.797 1.315 (0.702 - 2.463) 0.393 More than 5kms 42/83 (50.6) 0.935 (0.560 - 1.562) 0.797 1 (- - ) - Caretaker in care Yes 119/245 (48.6) 0.327 (0.147 - 0.726) 0.006 0.385 (0.147 - 1.007) 0.052 No 26/35 (74.3) 3.059 (1.377 - 6.796) 0.006 1 (- - ) - B4: Disclosure of status To partner 73/137 (53.3) 1.125 (0.704 - 1.798) 0.623 1.016 (0.585 - 1.765) 0.954 To other person 72/143 (50.3) 0.889 (0.556 - 1.421) 0.623 1 (- - ) - E4: Presence of other facilities Yes 27/47 (57.4) 1.316 (0.699 - 2.477) 0.395 1.505 (0.710 - 3.192) 0.286 No 118/233 (50.6) 0.760 (0.404 - 1.431) 0.395 1 (- - ) -
38
From table 7 above, at bi-variable analysis, factors such as having contact information at the health facility [AOR 0.341(0.209-0.556)
PV 0.001], the health status of the baby AOR 2.68(0.999-7.192) PV 0.05], being a member of a family support group [AOR
0.391(0.233-0.656) PV 0.001] , belonging to the 35+ Age group 0.411(0.216-0.779)PV 0.006], place of delivery (p=0.033) and the
caretaker being in care at the facility (p=0.006) were the significant factors affecting the overall rate of lost to follow up; all with p
levels <= 0.05. Having contact information at the facility and belonging to a family support group were the most significant all with
p=0.001.
However, multivariable levels), having contact information at the health facility [AOR 0.332 (0.187-0.591)PV 0.001], being in care at
the health facility [AOR 0.385(0.147-1.007) PV 0.046], delivering at a health facility [AOR 0.226 (0.069-0.734) PV 0.033), belonging
to the 15-24 age group [AOR 2.762 (1.117-6.834) PV 0.028], health status of the baby being good most of the time [AOR 4.750
(1.455-15.507) PV 0.010], and belonging to a family support group [AOR 0.477(0.268-0.847) PV 0.012] still showed significant
effect on the overall rate of loss to follow up.
39 Despite the mentioned factors that are influencing loss to follow up, caretakers were asked
during the course of the study what they thought were the factors that led to loss to follow up
from the EID care. The table 8 below summaries the responses of 269/280 caretakers that were interviewed and reported at least more than one factor as contributing to LTFU hence a total of
362 responses.
Table 6: Multiple response analysis showing reasons for loss to follow up from EID care by infant- caretaker pairs. Percent of Reasons for dropping out of EID care Frequency responses Fear/stigma from community 113 31.22 Harassment by health workers 38 10.5 Long waiting time at the facility 24 6.63 Illiteracy 31 8.56 Lack of transport money 14 3.87 Moved/out migrated 10 2.76 Long distance to Facility 20 5.52 Forgetfulness of appointments 42 11.6 Unclear/ inadequate information/ instructions from health workers 52 14.36 Lost files/ documents 7 1.93 Busy at work 11 3.04 Total responses provided 362 100 Caretakers interviewed : 269 caretakers who declined interviews (Non respondents) 11
In table 8 above, , the top 5 most commonly given reasons for caretakers at Lira Regional
Referral Hospital associated with LTFU from EID care included the following although they were not limited to:
• Fear/ stigma from family, the community and their spouses while others simply keep
living in denial thus they do not want to be seen going to the ART clinic for testing and
treatment.
40 • Unclear or inadequate information given by health workers such as not specifying clearly
the dates on which to return and sometimes they do not have adequate information on
how to handle their children for instance, some do not find it necessary to return for the
2nd PCR once the first one turns out negative.
• Forgetfulness of appointment dates -they forget to check on the appointment card hence
missing their appointments.
• Harassment by health workers when they miss their appointments and especially when
they do not carry along any of the four required documents (ART card, Antenatal card the
EID card, and immunization card, these are required at each and every visit and yet they
are liable to be lost because of poor storage practices).
• Illiteracy of care takers (caretakers cannot read appointment notes)
All the factors stated above together with the confounding factors that are significantly associated with the rate of loss to follow up as shown in the results above make the combo of the
overall factors that affect the overall rate of loss to follow up in EID care in Lira Regional
Referral Hospital.
4.5 Conclusion
This chapter has presented the study results highlighting those factors that are responsible for the
loss to follow up of infant-caretaker pairs enrolled in EID care within Lira Municipality. The
next chapter discusses in depth the meaning of these results and their implications for care of
HIV-exposed infants and their caretakers not only in Lira Municipality but also in other parts of
Uganda.
41
CHAPTER 5: DISCUSSION OF THE RESULTS
5.1 Introduction
This research examined the factors associated with loss to follow up of infant-caretaker pairs enrolled in EID care in Lira Regional Referral Hospital. This chapter follows on from chapter four by discussing the findings from the study.
5.2 The prevalence of LTFU at Lira regional referral hospital
Early Infant Diagnosis (EID) of HIV infection provides the opportunity for identifying, follow up and testing for HIV-exposed infants. This potentially confers benefit to both HIV positive infants and their families through proper counseling, linkages to comprehensive HIV care, safe infant feeding options and follow up for growth monitoring and development.
Loss to follow up in EID care is a persistent hindrance to the success of EMTCT programmes in the country and Lira District in particular. This study, therefore, sought to identify which factors were influencing the rate of loss to follow up among infant-caretaker pairs; categorically speculating between predisposing factors, enabling factors and the need factors as earlier examined in chapter two of this study.
The findings revealed that the EMTCT programme in Lira Regional Referral Hospital still has unacceptably high dropout rates of infant-caretaker pairs (overall 51.8%) though less than the national figure, remains a barrier to the achievement of the set Ministry of Health EMTCT targets. The findings suggest that 87/280 (32.8%) of infant-caretaker pairs were lost during the follow up period between the first and second PCR tests and the figure rose further to 150/250
42 (60%) of infant-caretaker pairs lost between the 2nd PCR and the final rapid HIV test signaling that as one moves along the continuum of care of EMTCT services, loss to follow up increases.
The LTFU rates between 1st and 2nd PCR probably highlight the gaps by the health staff in counseling of mothers during enrollment into the EID care with mothers not clearly understanding the importance of the program or follow up. LTFU rates after the 2nd PCR may be
due to the perception both the mothers and the health staff have that a negative 2nd PCR means
the baby is HIV free thus there is no need for a rapid test. These results are a clear indication that
the final HIV status of many HIV-exposed infants enrolled in Lira Regional Referral Hospital
PMTCT (EMTCT) program is thus unknown which complicates the assessment of the
programme effectiveness in preventing MTCT and hence the dire need to revise the hospital
strategy in its delivery of EMTCT services.
The high rates in this study are reminiscent of the 2013 Ministry of Health retrospective data
evaluation in 166 health units that identified over 60% of the mother-baby pairs nationally as
LTFU (MOH, 2013). Other studies such as by Sherman et al. (2004) in South Africa; Manzi et
al. (2005) in Malawi and Ahoua et al. (2010) in the northern region of Uganda (in which Lira
District is found) all reported high overall dropout rates of infant-caretaker pairs of 70%, 55%
and 53% respectively. The results were also close to those in a systematic review of 44 articles by Kalembo et al. (2013) that reported LTFU rates of mother-baby care pairs ranging from 19%
to 89.4%.
Other studies have reported lower rates of LTFU than this particular study, including those done
by Panditaro et al. (2011) in India with 19.6% and Sessolo et al. (2013) in the Ugandan military
43 with 19.2%. The differences in rates may be because of a system of follow-up of HIV-exposed infants, which was enhanced through having a single center for coordinating care of HIV- exposed infants in India while in the military barracks a close follow up system of military families is already in place in which a military identification number is used as a major tool to closely follow up a particular soldier and their family. The differences in the rates may also be due to the change in the study area and setting covered by these particular studies as compared to
Lira Regional Referral Hospital. It is therefore important that Lira Regional Refferal Hospital learns from similar studies that have implemented interventions that have reduced LTFU.
5.3 Predisposing, enabling and need factors associated with LTFU at Lira RRH
In our study, belonging to a Family Support group was consistently significantly associated with
reduction in LTFU at all levels of EID care. The study suggests a linkage of mothers/caretakers
to Family Support groups as a way of reducing the overall risk of LTFU [AOR 0.477;CI (0.268-
0.847) pv 0.012 ], LTFU between the 1st and 2nd PCR [AOR 0.175;CI (0.078-0.389) and LTFU
between 2nd PCR and Rapid test by [AOR 0.461;CI(0.260-0.817) pv 0.008].
The overall association of Family Support Groups to retention in care may be explained by the
fact that mothers in such a group are trained to deal with stigma and disclosure related issues
which are a major barrier to the return for further care by the mothers/caretakers as reported by
Painter (2004); Braitstein et al. (2011); Turan et al. (2012); Medema-Wijnveen et al. (2012);
Donahue et al. (2012) and Finlayson & Downe (2013). This finding is further emphasized in the
multiple responses from the semi-structured questionnaire where mothers reported fear of stigma
by their own people who knew them as one of the reasons for their not reporting back for care.
The study findings are further re-emphasized by Sibanda et al. (2013) in a systematic review
44 study carried out to assess the magnitude of loss to follow-up of HIV-exposed infants along the
PMTCT/EMTCT continuum.
The study findings by Kalembo et al. (2013) also reveal that programmes that involve
community members in developing, implementing, and monitoring activities are more likely to be acceptable to the community and to have more effective outcomes. In the same study,
Kalembo et al. (2013) reports psychosocial support from peers as helpful in women adhering to
PMTCT programme recommendations and good examples reported included Mothers2Mothers
(M2M) and Family Support Groups (FSGs). An earlier study by Hassan et al (2012) reported
poverty and lack of social support as major challenges in accessing EID services. This may
probably call for developing of initiatives by the Ministry of Health together with Lira Regional
Referral Hospital to ensure increased enrollment and maintenance of such Family Support
Groups through for example, encouraging community-based income generation activities that
will eventually keep these mothers together and thus ensuring that they continue to access the
needed care for the sake of their infants, families and wider community.
The lower risk reduction between 1st and 2nd PCR compared to 2nd PCR and Rapid test may be because between the 1st and 2nd PCR mothers are new to the group possibly not sure of any
benefits or are in a forming stage of team formation. This thus limits the full effect of FSGs since
not all mothers are fully contributing to the group compared to mothers already comfortable in
the group between 2nd and rapid HIV test.
45 The loss to follow up of HIV exposed infants/ caretakers also varied with different ages, younger
caretaker/ maternal ages (15-24) [AOR 2.851(1.158-7.021) PV 0.023] between the 2nd PCR and
rapid test and overall LTFU [AOR 2.762(1.117-6.834) pv 0.028] were more likely to be LTFU compared to older maternal ages (+35 years) and these findings are supported by Hassan et al,
2011 in a study conducted in Kenya. This could be because the younger maternal ages don‟t
have enough knowledge; monetary resources to ensure follow up and possible easily affected by
stigma, discrimination and fear. This is a call on community and other partners to not only encourage prevention of pregnancies among younger mothers living with HIV but also respond to their broader health, social and economic needs.
The study findings also revealed that among the enabling factors, capturing of a mother‟s or
caretaker‟s telephone contacts in the EID register was found useful in reducing incidences of
LTFU of mother/caretaker-baby pairs both between the 2nd PCR and rapid tests at 18 months
[0.350 (0.197-0.622) PV 0.001] and at overall LTFU [AOR 0.332(0.187-0.591) PV 0.001]. In the
2013 PMTCT assessment by the Ministry of Health and Sessolo et al. (2013), capturing
caretakers/mothers‟ telephone contacts was a predictor in increasing retention of mother-baby
pairs in EID care. This may be due to the ease with which health staff could follow up on these
clients when they have defaulted on appointments or the fact that mothers know their contact
details have been solicited at the health facility, which reassures them that the health staff do care
about their health and that of their babies. This encourages, mothers to find time to report for
care at the health facility and to honor their appointments.
46 The ability of mothers/caretakers to own a mobile phone for easy communication is an indirect
measure of a sustainable source of income. The change in significance along the continuum may
mean mothers were able to access mobile phones along the continuum and thus were easily
followed up to reduce the number of those LTFU. In a study to assess social demographic factors
associated with LTFU of HIV-infected women attending a private sector PMTCT program by
Panditrao et al. (2011), poverty was reported as a contributing factor to LTFU for mothers.
Another study by Cook et al. (2011) identified independent sources of income as a predictor of successful retention of mother-baby pairs in EID programmes in a Mozambican rural hospital. In this study however being employed did not give any significant findings associated with LTFU and this probably may be due to a bias in our population‟s selection since this is a rural setting with most of the study participants being unpaid house wives. This therefore calls on the introduction of programs that fight HIV by increasing mothers income through engaging them in income generating activities.
Our study findings further revealed that mothers who delivered from the hospital were found to be less likely to get LTFU throughout all EID care levels between 2nd PCR and rapid test
[0.263(0.080-0.863) PV 0.028] and overall LTFU [AOR 0.332(0.187-0.591) PV 0.001]. This is
an indicator that accessing delivery services and care can facilitate successful EMTCT program
and retention in care. This may probably be due to timely counseling offered to the
mother/caretaker on how to keep her HIV-exposed baby negative and also the first hand care
given such as ARVs (Niverapine) during postnatal periods thereby motivating the
mother/caretaker to return for care.
47 Studies conducted in Malawi by (Manzi et al.,2005; Braun et al., 2011) reported that many existing program suffered from high attrition rates and incomplete PMTCT follow-up due to the fact that many women, especially in rural areas, delivered at home rather than at a health facility.
These study results may have been influenced by other factors such as fear of being stigmatized because of one‟s HIV-1-positive status, cultural and poor socio-economic status since these also
influence the choice of delivery location as reported by Merdekios and Adedimeji (2011) in their
study in Southern Ethiopia. There is need for demand driven strategies and innovations by
hospitals or health facilities in order to increase the number of mothers accessing delivery
services in these facilities. Follow up mechanisms for mothers delivering out of health centers
should also be put in place as community initiatives and should be integrated with a wide range
of other services so that they each complement one another.
The study data indicates that those caretakers whose babies are healthier are likely to become
LTFP between 2nd and rapid test [AOR 3.807(1.231-11.770) PV 0.02] and at overall LTFU
[AOR 4.750 (1.455-15.507) PV 0.010 ] as compared to those whose babies are always sickly.
This may explain partly the reason why some caretakers did not see the relevance of visiting a health facility or clinic since they presumed their babies to be healthy.
This perception does shed some light on the nature of our country‟s health system which is designed to focus majorly on the sick babies or otherwise rather than on asyptomatic healthier looking babies too. This means that those children found to be symptomatically HIV-infected are systematically better cared for, compared to HIV-exposed babies by the prevailing healthcare
system as reported by the retention of mother-baby pair assessment of Ministry of Health in 2013
and a study in military health units by Sessolo et al.(2013).
48 The above factor is closely related to that of mothers/caretakers who received ARVs treatment in
ANC and were reported to be LTFU at overall analysis of LTFU [AOR (2.693(1.019-7.118) PV
0.046]. This finding was in contradiction of the 2013 PMTCT assessment by the Ministry of
Health and Sessolo et al.(2013) and by Oga et al. (2011). This could possibly be because of the frequency of visits to the adult ART clinic that was not synchronized with the scheduled visits of the HIV exposed infants to the EID clinic. It is therefore imperative to note that at the time of the study the concept of mother baby care point has not been well established at Lira Regional
Referral Hospital.
From the multiple responses captured through the semi-structured questions, unclear, inadequate information, coupled with harassment from health workers, lack of transport, and migration were noted as barriers to adherence of appointments by mothers. These were similar studies by Painter et al. (2004); and Kalembo et al. (2013). These reasons will help us strategize better while understanding the mothers‟ hindrances to adherence to appointments.
5.4 Study strength
• This study was held at lira Regional Referral Hospital an up- country health facility
which offers a real world setting different from an urban health facility setting which has
a lot of resources. This offers a chance to generalize the study findings to a big number of
caretakers/mothers in Lira District.
• The multiple response part of the study with semi-structured questions ensured the
capturing the mothers‟ perceptions on why mothers/caretakers were LTFU at Lira
Regional Referral Hospital. This will guide the hospital management in formulating
patient related strategies that will improve the delivery of their programmes.
49 5.5 Limitations of the study
• Despite identifying important factors associated with LTFU using the multi-variate
model, we cannot rule out the possibility that the study results were influenced by
unmeasured confounders such as facility infrastructure which unfortunately were not
evaluated in this study.
• It is possible that selection bias did occur with the purposive selected of study
participants with full contact information hence making it difficult to measure the
magnitude of the loss to follow up.
• The relatively low sample size in this study may be a hindrance in generalizing the
findings to other EID programs.
5.6 Conclusion
In light of the results presented in chapter four of this work, this chapter discussed the prevalence
of loss to follow up incidents at Lira Regional Referral Hospital. The discussion would not have
been complete if the influence of predisposing, enabling and need factors associated with loss to
follow up were not mentioned. There was also a chance to present the impact of the study
strength and limitations so that it can guide the reader‟s understanding of the results accruing
from the study and also future research studies.
50
CHAPTER 6: CONCLUSIONS AND RECOMMENDATIONS
6.1 Introduction
This research examined factors associated with loss to follow up of HIV-exposed infant- caretaker pairs enrolled in Early Infant Diagnosis, categorized into predisposing, enabling and need factors. After the discussion of study results, this chapter follows on to conclude this research study and suggest recommendations for future research.
6.2 Conclusion
In conclusion, the study findings reveal a high rate of lost to follow up at EID care in Lira
Regional Referral Hospital. Capture and use of caretakers contact information at the facility, delivery from a health facility or joining a family support group play a major role in reduction of risk of LTFU. Being a young mother of 15-24 age groups, having an HIV positive exposed baby with good health status were more likely to be LTFP. Achievement of PMTCT/EID WHO set target is unlikely at Lira hospital unless LTFU prevention targeted strategies are introduced.
6.3 Recommendations
• The Lira Regional Referral Hospital EID clinic nurses and community should focus on
all HIV positive mothers especially young mothers living with HIV by responding to
their broader health and social needs, for instance encouragement to join family support
groups and programs that fight HIV by increasing mothers‟ income.
• The EID clinic nurses should as much as possible encourage HIV positive mothers to
provide telephone contacts, physical addresses and their next of kin (as alternative
contact) to enable follow ups of infant caretaker pairs defaulting on appointment.
51 • The Lira Regional Referral Hospital EID clinic nurses should synchronize the
appointment dates of infant-caretaker pairs so as to minimize on frequency of visits thus
saving on time and resources that would otherwise be spent moving back and forth to the
health facilities.
• The nurses should sensitize mothers/caretakers of HIV exposed infants found
asymptomatic on the relevance of continued testing and counseling from the very
beginning through to the final diagnosis even when previous tests have proved negative
and the baby‟s health is considered good.
52
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APPENDIX 1: TABLE SHOWING WHO GUIDELINES ADOPTED BY UGANDA’S MINISTRY OF HEALTH ON PMTCT/EID IMPLEMENTATION
Option A Option B Regimen for Mother After the HIV test, if positive, there is no requirement to HIV test and then CD4 blood counts or HIV clinical do CD4 counts or clinical staging to determine the disease staging to determine course. HIV positive course. The HIV positive mother is started on Triple mothers with CD4 counts more than 350 or stage 1 and 2 ARV from 14 weeks until one week after the mother are put on the regime below: stops breastfeeding. The regimen includes three anti- • Starting 14 weeks of pregnancy, mothers receive the retroviral medicines: TDF + 3TC + EFV. ARV regimen of AZT; Regimen for the HIV exposed Infant • At the onset of labour, the mothers are given a single All HIV exposed infants are on Niverapine (NVP) for 6 dose of Nevirapine (NVP); weeks. • AZT + 3TC during labour and delivery; The new Option B+ is an improvement of Option B • AZT + 3TC for 7 days postpartum; If the HIV test is positive, with Option B+, there is no • Positive Mothers with CD4 counts that are below 350 requirement to do CD4 counts or clinical staging to or stage 3 and 4 are started on Highly Active Ante Retro determine the course. The HIV positive mother is Viral Therapy (HAART) for life started on Triple ARV from 14 weeks of pregnancy and Regimen for the HIV exposed Infant under option A for the rest of her life. Among populations that practice breastfeeding the infant Regimen for the HIV exposed Infant is given a daily dose of NVP from birth until one week All HIV exposed infants are on Niverapine (NVP) after all exposure to breast milk. Among populations that for 6 weeks. do not practice breastfeeding of infants; the exposed baby is given NVP for 6 weeks. KMCC (2012)
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APPENDIX 2: CONSENT FORM FOR PARTICIPANTS INVOLVED IN THE STUDY
Introductions, Good morning/ Good afternoon sir/madam I am called a member of
a team from Makerere University school of public Health in collaboration with Lira regional referral
hospital (LRRH). We are conducting a study to identify factors associated with loss to follow up of HIV
exposed infants/caretaker pairs at Lira Regional Referral Hospital. The information is being sought from
their mothers, fathers or guardians. Up to 280 caretakers will be interviewed and your information will be
combined with theirs to make totals.
The information generated will be used to inform policy makers and District Health authorities to plan for
implementation and better management of this service. This will help reduce on the morbidity and
mortality associated with early childhood HIV/AIDs in un-diagnosed infants and prevents possible postnatal HIV acquisition in those found to be negative. Your participation in the study is voluntary.
Refusal to participate will not alter your usual health care or involve any penalty or loss of benefits to which you are entitled. If you join the study you may withdraw at any time and for any reason without penalty. The information you volunteer will be confidential and no names will be mentioned. We are kindly requesting you to participate in this study.
Do you accept to participate in this study? Yes No .
If yes Signature of left thumb print of the interviewee
Name of the interviewer
Telephone contact
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APPENDIX 3:SEMI-STRUCTURED QUESTIONNAIRE
A. Socio- demographic of the respondents/caretakers
A1. What is the name of the mother/caretaker_ ?
A2. Caretakers Village: Parish/Zone Sub county/Division:
A3.What is the mothers ANC number
A4. What is the caretaker’s age in completed years?
A5. What is the caretaker relationship to the HIV exposed infant 1. Mother 2. Father 3. Guardian specify
A6. Caretaker’s marital status 1. Married 2. Single 3. Divorced 4. Widowed 5. Others specify
A7. Education status; what is the highest level of school you attended? 1. None 2. Primary 3. O level 4. A level 5. Tertiary 6. University
A8. How many members are in your family? A9. How many children do you (caretaker) have
A10. Caretakers Occupation 1. Employed 2. Unemployed 3. Other (specify)………………………
B. HIV status disclosure among respondents 64
B1. When was mother known to be HIV infected? 1. Before pregnancy 2. During pregnancy 3. After pregnancy B2: Did you test for HIV with your partner or alone 1. With partner 2. Alone 3. Never had a test B3: Has the caretaker disclosed her HIV status to anyone? 1. Yes 2. No
B4: If disclosed status, to whom? 1. Husband 2. Children 3. Others specify
C. Perceived Importance of ANC attendance and facility delivery factors. C1. Did caretaker/mother attend ANC while pregnant with this baby? 1. Yes 2. No
C2. If Yes, where? 1. This Facility (LRRH) 2. Other Public health facility 3. Private health facility 4. Others specify C3. What was the gestational age (age of pregnancy) at 1st ANC while pregnant with this baby? C4. How many times did you attend antenatal care during the pregnancy of this child? 1. Once 2. Twice 3. Three times 4. More than three 5. Others specify
C5. Did caretaker receive any ARV drugs in ANC while pregnant with this baby? 1. Yes 1. No
C6. If yes what were the ARVs for?
1. ylaxis 2. HAART 3. rs specify C7. Where was this baby born? 1. LRRH 65
2. At another Public Health facility 3. Private Health facility 4. At a TBA 5. Home For 3 and 4 classify as non health facility C8. What is the birth order of this child in the family
C9. At birth was Infant ARV prophylaxis given? 1. Yes 2. No C10. If ARVs not given at birth, did baby receive Nevirapine (NVP) at a later date? 1. Yes 2. No C11. If yes at what age did baby receive NVP?
C12. Did you attend postnatal care/ receive at 6 weeks to 8 weeks at LRRH? Did this influence loss to follow- up? 1. Yes 2. No C13. Have you ever heard about the HIV test done for infants born to HIV positive mothers? 1. Yes 2. No C14. If yes, from where did you get the information?
1. Health workers 2. Mass media 3. Others specify C15. Did you bring your baby to EID clinic at LRRH for 1st PCR test (1st HIV test)? 1. Yes 2. No C16. If yes at what age did you bring your baby for first DNA PCR test? 1. At 6weeks 2. Between 6 weeks and 3months 3. After 3months 4. Others specify C18. Which unit were you and the baby before referral/ coming to the EID clinic? 1. ANC 2. YCC 3. Pediatric ward 4. OPD 5. Nutrition 6. Maternity 7. Others specify C19. What was the feeding option chosen for the baby from birth to the time of 1st PCR? 1. Mixed feeding 66
2. Replacement feeding 3. Exclusive breastfeeding 4. Others specify
C20. How has been the health status of the child since birth?
1. Good most of the time( not sick most often)
2. Not good most of the time (sick most often)
C21. If yes to C15 what makes you bring your baby for Early Infant Diagnosis care? 1. Counseled about benefits of EID/ ART care 2. Eager to know the HIV results 3. Others (specify)………………….
C22. Does your child receive Co-trimoxazole and other services in EID care?
1. Yes 2. No C23. Did you get the HIV results of your baby after the first PCR test (first HIV test)? 1. Yes if yes continue to C25 2. No if no continue to question C24.
C24. If No why did you not get the HIV results of your baby? 1. Because of fear 2. Did not want to know the results 3. I was not told to go back to pick the results 4. Others specify
C25. If yes what were the test results at 1st PCR? 1. Negative 2. Positive
C26. If the first PCR was (either positive or negative), did you bring your baby for the 2nd PCR test (applicable to both answers in 25)
1. Yes 2. No
C27. At what age did you bring your child for (second) 2nd PCR test? 1. At 6 months 2. Between 6 months to 12months 3. > 12months 4. Never brought the child
67
C28. What was the feeding option chosen for the baby at (second) 2nd PCR test?
1. Mixed feeding 2. Replacement feeding 3. Exclusive breastfeeding 4. Complementary feeding 5. Not breastfeeding 6. Others specify C29. Did you get the test results of the baby after the second PCR test?
1. Yes if yes continue to C30 2. No if no continue to question C32 C30. If yes what were the test results at 2nd PCR?
1. Positive 2. Negative
C31. If positive was the baby referred/started on ART 1. Yes 2. No C32. If No to question C29 why did not get the test results of baby 1. Fear 2. Did not want to know the results 3. Results delayed to come back 4. I was not told when to come back for the results 5. Others specify C33. If negative at second PCR test did you bring the baby for the final HIV test (rapid test?)
1. Yes 2. No
C34. If yes at what age did you bring your child for rapid test?
1. At 18months 2. Between 18 months and 24months 3. > 24months 4. Never brought back the child for the test. C35. What was the feeding option chosen for the baby at (second) 2nd PCR test?
1. Mixed feeding 2. Replacement feeding 3. Exclusive breastfeeding 4. Complementary feeding 5. Not breastfeeding 6. Others specify C36. Did you get the test results of the baby after the rapid HIV test (final HIV test)? 1. Yes if yes continue to C37 68
2. No if no continue to question C38
C37. If yes what were the test results at 18 months rapid test? 1. Positive 2. Negative
C38. If No why did not get the final HIV test results of baby 1. Fear 2. Did not want to know the results 3. Results delayed to come back 4. I was not told when to come back for the results 5. Others specify C39. What was the date of baby’s last visit to the EID clinic
C40. What was the baby’s Scheduled next clinic appointment date after the last visit
C41. How long did it take the caretaker to bring the exposed infant to the clinic after the scheduled clinic appointment date? 1. Less than 1 month 2. Between 1 month to 3months 3. After 3 months 4. Did not return C42. At discharge from the EID clinic what was the final outcome of the child’s HIV status was as documented in the EID chart from the EID clinic as; 1. Negative 2. Positive 3. Dead 4. Lost to follow up 5. Transferred out 6. Referred to another health facility
D. Perceived importance of ART and chronic care for the Caretaker
D1. Is the Caretaker in HIV care at this facility? 1. Yes 2. No D2. What was the date/year the caretaker was enrolled in ART care D3. If No, What is the name of the health facility Caretaker is attending ART care?
D4. Do you (caretaker) belong to any social groups of PLWHA (Family support Group)? 1. Yes 2. No D5. Has the caretaker been reported as lost to follow up (missed last scheduled visit for more than 3 months?) 1. Yes 2. No 69
D6. Is there presence of phone number in the records to enable follow up? 1. Yes 2. No D7. Is there Presence of directions to the client’s home to enable follow up? 1. Yes 2. No
D8. Was Caretaker /mother followed up since lost to follow up?
1. Yes 2. No D9. How many times was the caretaker followed up?
D10. How were/ was the caretaker followed up?
1. Phone calls 2. Use of VHTs attached to the health facility 3. Others specify
E. Health seeking and Accessibility factors
E1. Who far is this health facility from your Home?
1. Less than 5kms 2. More than 5kms E2. What is the cost of travelling to this health facility? 1. Less than 2000/= 2. More than 2000/= E3. Who provides this money?
1. Spouse 2. Self 3. Others specify
E4. Is there another facility in your area that provides ART and EID services? 1. Yes 2. No
E5. If yes why do you prefer this health facility
E6. In your opinion what are the common factors /reasons leading to caretakers being lost to follow up
70
Thank you for your participation
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APPENDIX 4: PERMISSION TO CONDUCT RESEARCH
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