Smart Discharges for Mom & Baby: Saving Mother-newborn Dyads by Developing a Predictive Risk Model to Identify Vulnerable Dyads and Guide Delivery of Evidence-based, Locally-informed Interventions for Targeted Post-discharge Care
Conditions: Maternal Sepsis, Neonatal Sepsis
Sponsor: University of British Columbia

 
 
 
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Makerere University School of Public Health Higher Degrees Research and Ethics Committee 
 
 
RESEARCH STUDY PROTOCOL  
 
Smart Discharges for Mom & Baby: A cohort study to develop prognostic algorithms for post-
discharge readmission and mortality among mother-infant dyads 
 
By 
 
Principal Investigators: 
Joseph Ngonzi, MBChB, MD, FCOG (ECSA) PhD 
Matthew O. Wiens, PhD, PharmD 
 
Co-Investigators: 
Nathan Kenya-Mugisha, MBChB, MMed, MPH 
Angella Namala, MMed, MSc 
Abner Tagoola, MBChB, MMed, MSc 
Lisa Bebell, MD 
Yashodani Pillay, PhD 
Mark Ansermino, MBBCh, MSc 
Niranjan Kissoon, MBBS 
Beth Payne, PhD 
Marianne Vidler, MPH, PhD 
Astrid Christoffersen-Deb, PhD, MDCM, FACOG, FRCPC 
Pascal Lavoie, MDCM, FRCPC, PhD 
Jeffrey Bone, MSc 
Implementing Agency: Walimu 
Funding Agency: Canadian Institutes of Health Research 

 
 
 
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TABLE OF CONTENTS 
Abstract 
5 
1.0 CHAPTER ONE: Background and literature review 
6 
2.0 CHAPTER TWO: Problem statement, justification, and conceptual framework 
7 
2.1 Problem statement 
7 
2.2 Justification of the study 
7 
2.3 Conceptual framework 
8 
3.0 CHAPTER THREE: Research Question and Objectives 
9 
3.1 Hypothesis 
9 
3.2 Objectives 
9 
4.0 CHAPTER FOUR: Methodology 
9 
4.1 Study design 
9 
4.2 Work Plan and Timeline 
10 
4.3 Study Sites 
10 
4.4 Study Population 
11 
4.5 Recruitment 
13 
4.6 Data collection 
14 
4.6.1 Training of research assistants 
14 
4.6.2 Data Collection Tools 
14 
4.9 Data Analysis 
18 
5.0 CHAPTER FIVE: Ethical considerations 
20 
References 
22 
 
 
 
 

 
 
 
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ACRONYMS AND ABBREVIATIONS 
FGD  
 
 
Focus Group Discussion 
JRRH   
 
Jinja Regional Referral Hospital 
MakSPH IRB   
Makerere University School of Public Health Institutional Review Board 
MoH   
 
Ministry of Health 
MRRH  
 
Mbarara Regional Referral Hospital 
MUST   
 
Mbarara University of Science and Technology 
NICU  
 
Neonatal Intensive Care Unit 
ANC 
 
 
Ante-Natal Care 
PNC  
 
 
Post-Natal Care 
REDCap  
 
Research Electronic Data Capture 
UBC  
 
 
University of British Columbia 
WHO   
 
World Health Organization 
SpO2  
 
Oxygen Saturation 
MUAC  
 
Mid-Upper Arm Circumference  
 
 
 
 
 
 
 
 
 
 
 
 
 

 
 
 
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OPERATIONAL DEFINITIONS OF KEY TERMS 
Emancipated Minor: According to the Ugandan National Guidelines for Research Involving 
Humans as Research Participants, emancipated minors are defined as individuals less than 18 
years of age who are pregnant, married, have a child, or cater for their own livelihood. 
 
Health professional or provider: A trained individual with knowledge and skills to provide health 
care in a systematic way to people, families or communities. They include doctors, nurses, 
midwives, hospital administrators, and community health workers. 
 
Hospital Discharge: The point at which inpatient hospital care ends. 
 
Hospital Discharge Process: The multiple transitions within a patient’s care journey from 
arriving at the hospital until 72 hours post-hospital discharge involving the patient/caregivers, 
healthcare workers, and the health system.  
 
Patients: Women and girls over the age of 12 years admitted to a participating health facility to 
give birth. Once the mother has given birth, the newborn baby becomes part of the mother-
infant patient dyad.  
 
Primary Caregiver: The person primarily responsible for the care and upbringing of the infant or 
underage mother enrolled in the study as a maternal infant dyad. 
 
 
 
 
 
 
 
 
 
 
 
 
 
 

 
 
 
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Abstract  
 
The first 6 weeks after birth remains a critical period of vulnerability for mother-newborn 
dyads. The WHO recommends at least 4 postnatal check-ups at a facility or by a community 
health worker in the first 6 weeks after birth. Yet this is not possible for many dyads because of 
overburdened health systems and scarce family resources. Personalized risk scores can help 
frontline healthcare providers identify high-risk mother-newborn dyads before discharge from 
hospital, and guide recommendations for essential postnatal care. The health of a child is 
closely linked to the health of its mother, so it is essential that we consider the mother and 
child as a dyad. Here, we aim to develop a to risk predictive algorithm that integrates data 
about the health of the mother and newborn to identify mother-newborn dyads who are at a 
high-risk of dying or hospital readmission during the post-delivery, post-discharge period. This is 
a mixed-method study at two hospitals in Uganda. We will conduct an observational cohort 
study to develop and internally validate our risk score and aim to recruit 7000 mother and 
newborn dyads from Jinja Regional Referral Hospital and Mbarara Regional Referral Hospital.  
We will engage with patients, families, and health workers through direct observation, journey 
mapping, process mapping, and focus group discussions to identify gaps and opportunities 
during in-hospital, discharge, and post-discharge care for informing the development of an 
evidence- and risk-based bundle of interventions to improve postnatal care (PNC) for dyads. We 
will leverage our experience developing, validating and implementing an innovative precision 
public health approach for improving post-discharge care for children in Uganda following 
hospitalization for severe infection. Ultimately, our personalized risk score, combined with 
interventions that target prevention or treatment of critical causes of death or illness, will 
inform evidence-based recommendations for PNC, and improve health outcomes for dyads. 
Treating the mother and newborn as a dyad ensures that when one is sick, the other can be 
more closely monitored to prevent their potential decline in health. 
 
 
 
 
 
 
 

 
 
 
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1.0 CHAPTER ONE: Background and literature review 
 
In 2017, 290,000 mothers died from complications of pregnancy or childbirth, and 2.5 million 
newborns died within the first 6 weeks of their life globally9,10. Most of these deaths occurred in 
sub-Saharan Africa9,10. Uganda has made progress in reducing their maternal mortality and 
under-5 mortality rates by 25% and 42%, respectively between 1995 and 20154. Unfortunately, 
this progress in mortality reduction has not been as rapid during the postnatal period5.  
 
The first six weeks following delivery bear the most significant and persistent burden of under-5 
and maternal death, and severe neonatal and maternal morbidity. Efforts are currently 
underway to improve outcomes immediately following births at health facilities for both 
mothers and newborns. However, care following facility discharge presents significant 
challenges and accounts for a high proportion of maternal and neonatal death and morbidity. In 
facilities across sub-Saharan Africa, women and their newborn infants are routinely discharged 
from facility within 24hrs of birth6. Yet, 30% of mothers who die during the first 6 weeks do so 
after 24 hours. Thus, the postpartum period is a vulnerable time in which women are highly 
susceptible to infections and complications resulting from childbirth13. Despite this, limited 
studies have examined risk factors for postpartum complications specifically in LMICs where 
maternal mortality rate are the highest. Understanding what puts women at risk of death due 
to these complications is a first step to designing effective interventions during the postpartum 
period. This could in turn improve child outcomes, as several studies have shown maternal and 
child outcomes to be inextricably linked14, 15. Limited resources within the health system, in the 
context of significant poverty, hinder good adherence to the recommended frequency of 
postnatal visits throughout sub-Saharan Africa, resulting in many vulnerable families not 
receiving lifesaving interventions. Evidence driven discharge planning and post-discharge care is 
a neglected aspect of facility-based management worldwide6,7,8. 
 
Currently, the World Health Organization (WHO) recommends three in-person postnatal visits 
for all mothers and newborn infants born at a health facility within the first six weeks of life6. 
The evidence used in formulating this recommendation is primarily based on timing of maternal 
and neonatal deaths and evidence surrounding the efficacy of the components of care 
recommended during the postnatal period. Despite this WHO recommendation, achieving any 
postpartum follow-up care has been challenging in many low-resourced settings. For example, 
in Uganda, only 57% of women received one visit with a skilled health care provider within 41 
days of delivery3. There is an important opportunity to tailor recommendations for timing and 
frequency of follow-up to individual risk, to guide the use of scarce healthcare resources. 
Personalized risk scores can help frontline healthcare providers identify high-risk dyads before 
discharge from hospital, and guide recommendations for essential PNC. This approach 
facilitates safer hospital to home transitions and efficient allocation of scarce resources. 
Adherence to the recommended PNC visits is critical for those at higher risk.  
 

 
 
 
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The development of an evidence base upon which to build recommendations for the timing and 
intensity of postnatal care in resource-poor countries is urgently needed. This study aims to 
address this gap in care coverage using a precision medicine approach to postpartum follow-up. 
Our approach to risk stratification integrates data about the health of both the mother and 
newborn. This ensures that when one is sick, the other can be more closely monitored to 
prevent their potential decline in health. We are working to expand our innovative precision 
public health approach to improving post-discharge care for mother-newborn dyads. Our aim is 
to build a discharge risk prediction score that identifies high-risk dyads before hospital 
discharge. To achieve this, we will conduct an observational cohort study in 7,000 dyads 
discharged together after live births at JRRH and MRRH. With the data collected from this 
study, we will be able to develop prediction models with up to 30 candidate predictors for both 
maternal and newborn outcomes separately.  
 
2.0 CHAPTER TWO: Problem statement, justification, and conceptual framework 
 
2.1 Problem statement 
Neonatal outcomes are highly correlated with the health of the mother, an example of this is 
shown repeatedly by poor rates of survival of infants after maternal death1,2. Prediction of risk, 
based on the mother and infant as a pair, is a major gap in current research and yet vital to the 
survival of both the mom and the infant. In our prior epidemiological study of post-discharge 
outcomes among 3,236 dyads, we found that most readmissions were due to infectious illness 
and occurred early in the post-discharge period. Of the 2,926 dyads with complete follow-up 
data 7.1% of dyads reported at least 1 outcome. 3.6% of newborns were readmitted, 0.8% died, 
and 2.7% of mothers were readmitted. For readmitted newborns, the most common diagnosis 
was sepsis (63%), and 19% were in respiratory distress at readmission. For readmitted mothers, 
the most common diagnoses were surgical site infections (51%), puerperal sepsis (43%), malaria 
(19%), and other infections (5%). Considering the health of the mother and newborn as a dyad 
is an innovative and effective approach as the health of a child is closely linked to the health if 
its mother. A mother’s morbidity or mortality affects the health of all her children – and 
newborns whose mothers died during the first 6 weeks have an even greater risk of dying that 
those whose mothers survive15. Thus, we can improve maternal and child health outcomes by 
identifying both mothers and babies at increased risk of mortality or serious morbidity after 
hospital discharge and allocating scarce resources for targeted follow-up to those most 
vulnerable. This allows us to not only improve health outcomes but benefits the health system 
with efficient use of resources.   
 
2.2 Justification of the study 
Since 2011, we have been working with partners in Uganda to develop, validate, and 
implement an innovative program for children aged 6 months to 5 years who have been 
discharged following hospitalization for Sepsis/Severe Infection. In this quality improvement 
program, we call Smart Discharges, healthcare workers use an individualized risk prediction 
score to identify children at high risk of death or complications after discharge from a hospital 

 
 
 
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following treatment for suspected severe infection. They can then use this score to guide 
delivery of a counseling and community-referral program. While all participants receive 
counselling, only high-risk, vulnerable children receive down-referrals to community health 
facilities. We have shown that this approach has reduced post-discharge child mortality after in-
hospital treatment for serious illness by as much as 30%. Now, we are working to expand our 
innovative precision public health approach to improving post-discharge care for mother-
newborn dyads.  
 
Our aim is to use our findings to inform the development an evidence-based bundle of care for 
both the mother and newborn. This package will ensure that low-risk mother-infant pairs 
receive less burdensome (yet pragmatic and feasible) postpartum care, while high risk pairs 
receive a more extensive bundle of interventions (such as education, nutrition, healthcare 
interaction and community support). The Smart Discharges for Mom and Baby package will 
include support targeting aspects of both clinical and emotional wellbeing. Additional 
extensions of this work will include validation of our risk models in women who deliver at home 
(26.6% of births in Uganda) or suffer a stillbirth (2.4% of births in Uganda) to ensure that more 
women and babies can benefit from the proposed intervention3.  
 
2.3 Conceptual framework 
 
Our conceptual framework is clearly embodied within the concept of precision public health. 
Ensuring all mothers receive the recommended 3 postnatal care (PNC) visits following a facility 
delivery is challenging from a resource perspective. The majority of mothers survive beyond  
the critical first 6 weeks. However, a proportion of dyads remain vulnerable during this period.  
Health systems, particularly those in resource limited settings, must be able to ensure those 
most in need of care can appropriately receive such care. As such, our work is guided by 
improving our ability to identifying these vulnerable dyads and then developing a scalable and 
sustainable approach to ensuring the intensity of care is linked to the degree of risk.  

 
 
 
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3.0 CHAPTER THREE: Research Question and Objectives  
 
3.1 Hypothesis 
Maternal and infant characteristics collected at the time of discharge following a facility 
delivery can predict the risk of maternal or neonatal death or need for re-admission within six 
weeks of birth. 
 
3.2 Objectives 
Our primary objective is to inform the development of an integrated maternal and newborn 
risk-based post-discharge care program. Specifically, we aim to (1) develop and internally 
validate clinical risk prediction models for identifying dyads at high-risk of death or hospital 
readmission in the 6 week post-delivery post-discharge period, and (2) identify gaps and 
opportunities during in-hospital, discharge, and post-discharge care to inform the future 
development of an evidence-and risk-based bundle of interventions to improve PNC for dyads. 
 
4.0 CHAPTER FOUR: Methodology 
 
4.1 Study design 
This is a mixed-methods study using both quantitative and qualitative techniques to explore 
and map the current postnatal discharge processes in Uganda using data from two distinct 
hospital settings.  
 Phase I) We will conduct an observational cohort study informed through direct 
observation of the mother and newborn dyad prior to facility discharge and after 
delivery and follow-up telephone interviews conducted at six-weeks post-discharge. 
 
Phase II) We will conduct journey mapping with a subset of dyads enrolled in the 
observational cohort using direct observation and follow-up telephone interviews.  
 
Phase III) We will conduct a process mapping exercise using focus group discussion 
methodology with select facility staff. 
 
Phase IV) We will conduct focus group discussions with a subset of mothers enrolled in 
the observational cohort, as well as their family members.  
Table 1. Study design overview 
Phase 
Methods 
Participants 
Aim 1: develop and internally validate clinical risk prediction models 
Phase I 
Direct observation and patient interviews 
Mother and newborn dyads 
Aim 2: identify gaps and opportunities during in-hospital, discharge, and post-discharge care 
Phase II 
Patient journey mapping using direct 
observation and patient interviews  
Mother and newborn dyads  
Phase III 
Process mapping exercise  
Facility health workers 

 
 
 
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Phase IV 
Focus group discussion 
Mothers, fathers, and 
grandmothers 
 
 
4.2 Work Plan and Timeline 
 
 
4.3 Study Sites 
Study activities will be conducted at two hospitals (Mbarara Regional Referral Hospital (MRRH) 
and Jinja Regional Referral Hospital (JRRH)) in Uganda in the districts of Mbarara and Jinja.  
 
Table 2: Characteristics of the proposed study sites.  
 
District 
(Region) 
Hospital 
Type 
Location 
District 
population 
Annual 
deliveries 
Mbarara 
(Western) 
Mbarara Regional 
Referral Hospital 
Public 
Semi-rural 490,000 
7,500 
Jinja 
(Eastern) 
Jinja Regional Referral 
Hospital 
Public 
Urban 
483,000 
6,000 
 

 
 
 
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4.4 Study Population 
 
Phase I: Observational Cohort Study 
We will recruit 7,000 mother and newborn dyads from the two participating hospitals. Based on 
previously observed outcome and loss to follow-up rates, we will be able to measure the 
prevalence of maternal and newborn hospital readmission or death within a margin of error of 
1% and develop prediction models with up to 30 candidate predictors for both maternal and 
newborn outcomes separately with this sample size.  
 
Inclusion:  
 Women and adolescent girls aged 12 and above delivering a single or multiple babies at 
the study hospital during the active recruitment phase.  
Exclusion:  
 Inability, for whatever reason, to provide informed consent.  
 Language barrier  
 Mother is from a refugee camp 
 Mother has no access to phone or other means for follow-up 
 Mother lives outside of hospital catchment area  
We will continue to follow-up with all patients enrolled in the study. This includes enrolled 
mothers whose baby dies after discharge as well as enrolled babies whose mothers die. In the 
event that the mother dies, we will follow-up with the caregiver of the baby.  
 
Phase II: Patient Journey Mapping 
 
We will randomly select 100 mothers (50 per facility) from the phase I cohort of 7,000 dyads to 
participate in journey mapping due to intense time to capture.  
 
Inclusion:  
 Women and adolescent girls aged 12 and above delivering a single or multiple babies at 
the study hospital during the active recruitment phase.  
 Enrolled in Phase 1.  
Exclusion:  
Table 3. Phase I sample size 
Participants: 
Sample size (n=7,000) 
Maternal Infant Dyads 
3,500 per facility (n=7,000) 

 
 
 
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 Inability, for whatever reason, to provide informed consent.  
Exclusion:  
 
Inability, for whatever reason, to provide informed consent.  
 
Language barrier  
 
Mother is from a refugee camp 
 
Mother has no access to phone or other means for follow-up 
 Mother lives outside of hospital catchment area  
 
 
 
 
Phase III: Process Mapping 
We will purposively select a sample of 6 healthcare providers and 2 hospital administrators from 
each of the 2 study sites for participation in a process mapping exercise based on their level of 
experience, availability, and consultations from site leads (Table 4).   
 
 Inclusion:  
● Healthcare providers including physicians, nurses, medical students, and residents, who 
have been working in the maternity ward at participating health facilities for at least 2 
months. 
● Hospital administrators with some oversight on maternity ward operations. 
 
 
 
 
Table 4. Phase II sample size 
 
Participants: 
Sample size (n=100) 
Maternal Infant Dyads 
50 per facility (n=100) 
 
 
Table 4. Phase III sample size 
 
Participants: 
Sample size (n=16) 
 
Healthcare Providers 
6 per facility (n=12) 
 
Hospital Administrators 
2 per facility (n=4) 
 

 
 
 
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 Phase IV: Focus Group Discussion 
We will recruit 12 adult mothers, 12 teenage mothers, 12 fathers, and 12 grandmothers (n=48) 
at each of the two study sites for a total sample of 96 focus group discussion (FGD) participants. 
FGDs for teenage mothers will be conducted separately from adult mothers. FGDs will be 
conducted in a private space at each of the participating facilities. We will conduct one FGD for 
adult primary caregivers, one FGD for teenage primary caregivers, one FGD for fathers, and one 
for grandmothers at each facility for a total of 7 FGDs per facility.  
 
Inclusion:  
● Mothers, fathers, and grandmothers of children who were enrolled in phase I and who 
were recently discharged from a participating health facility. 
● Active involvement in or knowledgeable about the maternal infant dyad’s peri-discharge 
experience.  
● Have provided written informed consent.  
 
Participants: 
Sample size (n=96) 
Mothers 
12 per facility (n=24) 
Teenage Mothers 
12 per facility (n=24) 
Fathers 
12 per facility (n=24) 
Grandmothers 
12 per facility (n=24) 
 
4.5 Recruitment 
 
Phase I and II: Observational Cohort Study and Patient Journey Mapping 
Research nurses will recruit and obtain consent from eligible women after they have been 
admitted to the facility for delivery and prior to discharge. Eligible women will be informed of 
the study and asked if they wish to participate. If the eligible participant is a minor, the parent 
or legal guardians(s) of the participant will be approached first by the research nurse. Consent 
will not be sought until after the patient has received an initial assessment by health workers at 
the time of admission for delivery, and research nurses may wait until after delivery to 
approach eligible women so as to not interfere with standard care. Women who suffer a loss or 
who are caring for a severely ill infant, will be given the option to defer the interview portion of 
data collection until the six-week postnatal follow-up period. During the consenting process, all 
women will be told they are free to withdraw from the study at any point without needing to 
give a reason for withdrawal. Data collected up to the point of withdrawal will be de-identified 
and retained for analysis.  
 
Phase III: Process Mapping 

 
 
 
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Prior to the initiation of any study activities, healthcare providers and administrators will be 
notified of research activities through each respective hospital’s human resources department. 
Process mapping participants will be asked to provide written informed consent at the beginning 
of the exercise. No identifying information of site staff participants will be collected or shared 
with participating facilities.   
 
Phase IV: Focus Group Discussion 
Caregivers/family members will be purposively selected to participate in FGD from a 
convenience sample of children enrolled in the initial phase of the study as a maternal infant 
dyad. The mother will be recruited by a research assistant who will brief her about the study at 
the time of discharge. If the mother verbally agrees, the research assistant will also ask for 
permission to contact the baby’s father and grandmother for recruitment via phone. 
 
4.6 Data collection 
 
4.6.1 Training of research assistants 
Research assistants will be trained by a study staff member in both quantitative and qualitative 
methodologies including process mapping facilitation, telephone interviewing, FGD facilitation, 
and direct patient observation. Ethical conduct regarding participant recruitment, consent, 
confidentiality, and data security will also be covered in training sessions. Research assistants 
will have clinical experience in the hospital environment and will be fluent in the dominant 
language spoken in the regions where each hospital is located. 
 
4.6.2 Data Collection Tools 
At the point of care, phase I and II data will be collected on a mobile device and phase III and IV 
data will be audio recorded. Data collection will be performed by dedicated study staff. Direct 
observations will be recorded in English using customized observation surveys and field logs. 
Patient interviews and observation surveys will collect patient demographic data and clinical 
data. Semi-structured phone interview guides will collect post-discharge process data. Data 
from process mapping exercises will be captured using paper-based worksheets and digital 
audio recordings. Audio from FGDs will be digitally recorded, transcribed verbatim in the 
language spoken during the recording and analyzed for emerging themes. Transcriptions will be 
translated to English (when needed) and de-identified prior to analysis.  
 
4.6.3 Study Procedures 
Phase I: Observational Cohort Study 
I. 
Admission  

 
 
 
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a. The study team will collect admission variables and health and 
pregnancy history through chart review and interviews with the 
participant.  Data will not be collected during periods of maternal 
stress.  In this case, incomplete interview questions will be deferred to 
the discharge interview.  
1. Admission variables: These questions include mode of transport, 
maternal demographic and socioeconomic variables (e.g., 
distance travelled to the hospital, age, location of residence). Data 
collected will also include vital signs (e.g., temperature, blood 
pressure, heart rate).  
2. Health and pregnancy history: This includes questions on number 
of previous pregnancies, comorbidities, prior admissions, and 
medication history.  
II. 
Delivery 
a. Maternal variables: The study team will collect data related to the 
delivery including mode of delivery, method of induction, noted vaginal or 
perineal tearing, and any other major events or conditions occurring 
during delivery.  
b. Neonatal variables: Data will be collected related to the delivery including 
sex, Apgar score, weight, and resuscitation with oxygen therapy at birth.  
III. 
Discharge  
a. Clinical Data Collection: A maternal and neonatal clinical examination will 
occur prior to discharge.   
1. Maternal Clinical Exam: Research nurses will record clinical signs 
and symptoms including SpO2, heart rate, blood pressure, 
respiratory rate, and body temperature. We will also collect a 
small sample of blood (200 microlitres) to test hematocrit levels.  
2. Neonatal Clinical Exam: Research nurses will record clinical signs 
and symptoms data including weight, SpO2, body temperature, 
and urination and defecation status. Data will also be collected on 
the infant’s health status prior to discharge including NICU 
admission. 
b. Patient Interview: Following delivery, and prior to discharge, research 
nurses will conduct a structured interview and collect data including 
breastfeeding status, any symptoms experienced (e.g., headache, chest 
pain, difficulty emptying bladder, etc.).  
IV. 
6 Week Maternal and Newborn Follow-up (Outcomes) 
a. Telephone Interview: Research nurses and field officers will follow-up all 
dyads at 6 weeks postpartum to collect data on post-discharge care 
seeking and health outcomes, as well as newborn care practices. A verbal 
autopsy will be performed in all cases of newborn or maternal death. If 

 
 
 
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the mother or newborn was readmitted or died, data on clinical signs and 
symptoms and diagnoses during readmission or at death will be 
collected. 
 
Phase II: Journey Mapping 
I. 
Journey mapping: We will ask a randomly selected group of mother-infant dyads 
(n=100) additional questions to ascertain their movement through the hospital, 
perspectives on the current system of post-natal care, and post-discharge pathways, at 
various time periods including in the postnatal patient interview, 72 hour post-discharge 
follow-up, and at the 6 week follow-up telephone interview.  
 
 
Phase III: Process Mapping 
II. 
We will establish one working group (n=8) per facility who will be engaged in a process 
mapping exercise which is a qualitative methodology commonly used in quality 
improvement interventions. Process mapping exercises will be facilitated by a research 
assistant to gain an understanding of the post-natal discharge process as it currently 
operates and to identify inefficiencies to care and potential solutions. Working groups 
will engage in a brainstorming session using paper, pens, and sticky notes to map out 
the discharge pathways of their respective facilities. Group members will work together 
to identify all stages of the process and indicate the individuals involved at each stage. 
When the working group reaches consensus and deems the flowchart complete and 
accurate, it will then be analyzed by members to identify problems, bottlenecks, and 
non-value-added steps such as unnecessary work, duplication, or communication 
breakdowns. After process inefficiencies are identified, teams will brainstorm, first 
individually then as a group, to identify potential solutions. The process mapping 
exercise will take 90-120 minutes per facility. The facilitator will use prompts to 
motivate participants to discuss topics in greater detail as needed. All process data will 
be mapped to a stage of the discharge process to provide a comprehensive model of 
post-natal discharge processes from the provider perspective. 
 
Phase IV: Focus Group Discussion 
We will conduct focus group discussions with mothers and family members to explore 
needs and the value of post-discharge care, and social and economic barriers to seeking 
this care. For teenage mothers, as teenage pregnancy is associated with trauma, stigma, 
and discrimination, these participants may experience distress during the FGD. To mitigate 
this, FGDs for teenage mothers will be separated from adult mothers. Research Assistants 
(RAs) will be trained by an experienced qualitative researcher on how to ensure that the 
rights of subjects and confidentiality of data are protected and respected. RAs will be 

 
 
 
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instructed on how to create an open, inclusive, and confidential space with participants at 
the beginning of the discussion as well as how to intervene if the discussion becomes 
discriminatory towards other participants. RAs will reassure participants that their 
participation is entirely voluntary and that they can withdraw from the study at any time. If 
participants experience negative feelings during the discussion, they will be referred to the 
facility’s medical social worker for counselling.   
 Focus groups will begin with questions and conversations to build trust among 
participants. For mothers, grandmothers, and fathers, discussions will focus on illness 
recognition, health seeking/decision-making, postnatal care interventions, and interactions 
with the health system during the peri and post-discharge period. Data collected will 
include questions about the hospital stay, communication with the healthcare team, the 
discharge process, barriers faced upon discharge, and post-discharge PNC visits. 
Discussions will be conducted in the primary local language (e.g., Runyankole and Lusoga), 
audio-recorded, transcribed, and translated to English. 
 
 
4.7 Study Outputs 
Phase I: A pair of internally validated prediction models (one each for mom and baby) for 
identifying dyads at high-risk of death or hospital readmission after discharge following live 
birth in-hospital. Our candidate predictors for our models will be maternal and infant 
characteristics collected at the time of admission and discharge following a facility delivery.  
 
Phase II-IV:  A descriptive account of all aspects of the discharge process and postnatal care 
follow-up visits for facility-based deliveries, including identification of barriers and solutions to 
effective postnatal care from the perspective of patients, caregivers, and facility staff. We will 
use this information to inform the development of a bundle of interventions, with separate 
components for high-risk mothers and high-risk newborns, and a locally supported and 
culturally safe strategy for implementing this bundle of interventions. 
 
4.8 Outcomes (Phase I) 
The primary outcome is maternal and/or neonatal death or need for re-admission within six 
weeks of birth.  
 
Secondary outcomes include: 
1. Post-natal care visits during the 6-week post-discharge period  
2. post-discharge health seeking practices for mothers/newborns during the 6-week post-
discharge period 
3. Causes of readmission/mortality among those who experience such outcomes, based on verbal 
autopsies and admission symptom/diagnosis questionnaires 

 
 
 
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4.9 Study Limitations   
This study is subject to several potential limitations. First, losses to follow-up may reduce our 
effective sample size, thus diminishing our power to detect significance in some variables. 
However, our prior work in this area suggests that our losses to follow-up will be less than 5%. 
Furthermore, our study sample size has compensated for these potential losses to follow-up 
and we thus do not anticipate this to be an issue. Second, heterogeneity in outcomes may 
impact modelling of post-discharge events. We observed this to be a potential limitation in our 
prior work, in that the predictors were different between newborns and mothers, and even 
among mothers, between those with caesarean sections and those who delivered vaginally. To 
improve our probability of success, therefore, our sample size was developed to be able to 
model at least 3 separate outcomes. We anticipate that this will be sufficient to create a set of 
models which are comprehensive to capture various outcomes. Finally, With limited numbers 
of focus group discussions, this study may not reach thematic saturation. If this is deemed to be 
the case we will add additional focus groups, following a protocol amendment. 
 
4.10 Data Analysis 
 
Data will be spot checked by a core study staff member for quality verification and will be cleaned 
and coded by a research assistant. Data will be cleaned, coded, and analyzed using R Statistical 
Software for quantitative data and NVivo Software for qualitative data. Coded qualitative data 
from transcriptions and written narratives will be reviewed during team meetings and consensus 
will be reached on any discrepancies.  
 
Quantitative Analysis: We will summarise all risk factors for mothers and newborns that do and 
do not experience poor outcomes and estimate univariate associations. For newborns, data will 
be reported by sex. Derivation of prediction models will be based on optimization of the area 
under the receiver operating curve (AUROC) and specificity across a variety of modeling and 
variable selection approaches (e.g., logistic regression, elastic net, support vector machines). 
Model performance will be based on appropriate resampling techniques for internal validation 
(e.g., cross-validation, bootstrapping). We will focus on developing parsimonious predictive 
models (e.g., 5-10 predictor variables) with high sensitivity (>80%). AUROC, sensitivity, and 
specificity will be reported for each model, along with positive and negative predictive values. 
Site specific metrics will be compared to ensure consistency across settings, and recalibration 
may be considered if individual site performance is lower than expected. Finally, we will assess 
combined sensitivity and specificity when each individual model is applied to the dyad. Outside 
of prediction modelling, our sample size will allow us to detect an odds ratio of at least 1.30 for 
a given risk factor with 80% power and 5% significance and relative precision of 25%. Statistical 
analysis of quantitative data from journey mapping observation surveys and patient interviews 
will be performed using R Statistical software to obtain descriptive statistics of the frequency 
and distribution of each variable. 
 
 

 
 
 
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Qualitative Analysis: We will analyze data collected descriptively and report summary statistics. 
We will develop a diagram of the discharge process, identifying key areas for improvement 
during the peri-discharge and post-discharge process11. We will analyze FGDs using a 
framework method, which allows themes to be developed inductively from participants and 
deductively from existing literature12. Through an iterative process, transcripts will be coded 
and analyzed for descriptive and interpretive themes using NVivo. Descriptive themes include 
barriers to care and post-discharge health-seeking behavior, while interpretive themes focus on 
caregiver perspectives of maternal and neonatal death and the role of the health system. We 
will generate frequencies to describe reported medical symptoms, health-seeking behavior, and 
barriers to care, and summarize common themes. We will use member checking to improve the 
validity of our results, creating a summary document of the main findings that will be reviewed 
by health workers who participated in the focus groups. Feedback from patients and families 
will be obtained over telephone with research nurses who will explain the main findings 
verbally. 
 
4.11 Data Management 
Study data will be managed using customized Research Electronic Data Capture (REDCap) tools 
hosted at the University of British Columbia, with secure access by all investigators in Uganda 
and Canada. REDCap is a secure, web-based application designed to support data capture for 
research studies. Data will be entered into the REDCap database by a trained research nurse or 
research assistant after each activity is completed and audio recordings are transcribed. 
Members of the study team will ensure that the rights of subjects and confidentiality of data 
are protected and respected. Research assistants will be trained on how to keep data secure 
and confidential during direct-observation activities. No information that discloses the identity 
of participants will be released or published without their specific consent to the disclosure. 
However, research records identifying participants may be inspected in the presence of the 
Investigator for the purpose of monitoring the research. No records which identify the 
participants by name or initials will be allowed to leave the Investigators' offices. Each 
participant will be assigned a personal identifier to collect discharge process and follow-up 
data. All paper-based and digital audio recording data will be stored in a locked cabinet in a 
locked office at Walimu. Access to identifiers will be limited to those requiring this data for 
follow-up (i.e., only study personnel involved in telephone interviews). No analysts, co-
investigators or principal investigators not directly involved in the follow-up will have access to 
this data. Access to identifiers will require 2-way authentication: in addition to the normal 
password process, a secure code (sent via SMS to the user) will be required for access to this 
data. Identifiable data will be securely stored and destroyed after 10 years.  
 
After the study period, a de-identified copy of the data will be prepared for deposition in a 
repository with open access with proper governance mechanisms. We will make every effort to 
prevent re-identification of subjects by coding data that has the potential of being identifiable. 
For example, we will convert all dates into meaningful decimal numbers (date of birth into days 
since birth and date of recruitment will be reduced to month of recruitment) and all locations 
will be coded into data that is useful but not specific (such as address converted to distance and 

 
 
 
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direction from facility). We will ensure that data elements with small numbers of subjects (less 
than 10) will be coded or lumped to avoid identification. The de-identified study data will be 
made available using a data hosting service (e.g., the Pediatric Sepsis Data CoLaboratory’s 
Scholar’s Portal Dataverse, Vivli, etc.) 
(https://dataverse.scholarsportal.info/dataverse/Pedi_SepsisCoLab). Scholar’s Portal Dataverse 
is a virtual archive for Canadian research data with a rigorous data governance structure. To 
gain access to the Sepsis CoLab’s Dataverse, members must first sign a Memorandum of 
Understanding, whereas access to de-identified patient data requires signing a data sharing 
agreement. Data will also be shared through peer reviewed publications.  
5.0 CHAPTER FIVE: Ethical considerations 
 
5.1 Ethical Review and Approval Process 
We will obtain ethics approval from the Makerere University School of Public Health (MakSPH) 
Institutional Review Board, the Uganda National Council of Science and Technology (UNCST) in 
Uganda and the University of British Columbia in Canada. Any future revisions to study 
procedures will be submitted as formal amendments and approved by the MakSPH IRB and the 
University of British Columbia prior to implementation. Administrative clearance will also be 
obtained from the respective hospitals, and informed consent will be obtained from all 
participants before data collection begins.  
 
5.2 Informed Consent 
 
Written informed consent will be obtained from all study participants, as well as the parents or 
guardians of eligible minor participants. A signed and dated copy of the consent form will be 
kept in the documentation file at all times. All participants will be aware of the study rationale, 
as well as any potential risks. The consent forms make it clear that standard care will not be 
compromised if they do not consent to participate in this study. Consent will be obtained from 
minors following local protocols, which is to consider underage girls as emancipated minors 
with full independence to consent to participating in research. Obtaining written informed 
consent from minors will also require a parent/guardian signature or thumbprint. Participants 
and parents will voluntarily sign and date the consent form if they wish to participate in the 
study and will be provided with a copy of the consent form. There will be five separate consent 
forms: one each for minors and non-minors participating in the observational cohort study, one 
for healthcare workers participating in process mapping, and one each for minors and non-
minors participating in focus group discussions. Consent forms will be available in English, 
Runyankole and Lusoga (the English versions of these forms are included with this protocol; 
they will be translated into other languages prior to the study start date).  Patients/caregivers 
enrolled in journey mapping will be provided with a bar of soap and a kilo of sugar as a token of 
appreciation for their time participating in the study. Caregivers participating in FGDs will be 
provided with 30,000 UGX each to compensate for their time and transportation costs.  
 

 
 
 
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5.3 Risks/Benefits to Participants 
 
This is a minimal-risk study, as defined by all relevant ethics review boards in Canada and 
Uganda. The overall risks to participants are similar to those associated with standard clinical 
practice for facility deliveries and postnatal care. All dyads will receive routine care throughout 
their admission, in accordance with local hospital policies and national health guidelines. No 
study procedures will interfere with standard care, and consent will not be sought until after 
the patient has received an initial assessment by health workers. Relevant collected data (e.g., 
anthropometric data, vital signs) will be available to health workers for use during clinical care. 
Mothers or family members of dyads enrolled in the study may have painful memories 
triggered during follow-up, especially if the mother or newborn has died. To minimize this risk, 
all study staff will undergo empathy training and training on protocols for scenarios of extreme 
distress. If a mother is concerned about their health or the health of their child during follow-
up, they will be referred to the nearest health facility or community health worker for 
assessment. 
 
Risk of COVID-19 infection remains an ongoing concern. Study staff will follow all public health 
orders and infection control procedures at our study sites to reduce the spread of infection 
between staff and between staff and patients. Further, we will develop and implement a study-
specific COVID-19 risk mitigation plan outlining study-specific infection control measures and 
protocols for contact tracing and follow-up for any confirmed or suspected COVID-19 cases 
among study participants and staff.  
 
 
 

 
 
 
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References 
1. Scott S, Kendall L, Gomez P, et al. (2017) Effect of Maternal Death on Child Survival in rural 
west Africa: 25 years of prospective surveillance in the Gambia. PLoS One; 12(2) e0172286 
2. Moucheraud, C., Worku, A., Molla, M., Finlay, J. E., Leaning, J., & Yamin, A. E. (2015). 
Consequences of maternal mortality on infant and child survival: a 25-year longitudinal 
analysis in Butajira Ethiopia (1987-2011). Reproductive Health, 12(Suppl 1), S4. 
http://doi.org/10.1186/1742-4755-12-S1-S4 
3. United States Agency for International Development. (2016) ‘Ugandan Demographic Health 
Survey report” https://dhsprogram.com/what-we-do/survey/survey-display-504.cfm 
Accessed December 5, 2017 
4. World Health Organization and United Nations Development Plan. (2015) Final Millenium 
Development Goals Report for Uganda 2015: Results, Reflections and the Way Forward 
http://www.ug.undp.org/content/uganda/en/home/library/mdg/final-millennium-
development-goals-report-for-uganda-2015.html Accessed: December 2, 2017 
5. Sachs, J. D. (2012), From Millennium Development Goals to Sustainable Development 
Goals. The Lancet, 379(9832), 2206-2211 
6. World Health Organization. (2013) WHO recommendations on postnatal care for the 
mother and newborn 
http://www.who.int/maternal_child_adolescent/documents/postnatal-care-
recommendations/en/ Accessed April 11, 2013 
7. Wiens MO, Kumbakumba E, Kissoon N, Ansermino JM, Ndamira A, Larson CP. (2012) 
Pediatric sepsis in the developing world: challenges in defining sepsis and issues in post-
discharge mortality. Clinical epidemiology; 4: 319-25. 
8. Wiens MO, Pawluk S, Kissoon N, et al. (2013) Pediatric post-discharge mortality in resource 
poor countries: a systematic review. PloS One; 8(6): e66698. 
9. WHO. Newborns: reducing morality. Geneva, Switzerland: World Health Organization; 2019 
[cited 2019 Nov 26]. Available from: https://www.who.int/news-
room/factsheets/detail/newborns-reducing-mortality. 
10. WHO. Maternal mortality. Geneva, Switzerland: World Health Organization; 2019 [cited 
2019 Nov 26]. Available from: https://www.who.int/news-room/fact-
sheets/detail/maternalmortality. 
11. Sijm-Eeken M, Zheng J, Peute L. Towards a lean process for patient journey mapping – a 
case study in a large academic setting. Stud Health Technol Inform. 2020 Jun 16;270:1071-
1075. 
12. MacQueen KM, McLellan E, Kay K, Milstein B. Codebook development for team-based 
qualitative analysis. Cult Anthropol Methods. 1998;10(2):31–36. 
13. Uganda Bureau of Statistics. (2016) Demographic and Health Survey. 
https://dhsprogram.com/pubs/pdf/FR333/FR333.pdf Accessed December 16, 2021 
14. The Alliance for Maternal and Newborn Health Improvement (AMANHI) mortality study 
group. Population-based rates, timing, and causes of maternal deaths, stillbirths, and 
neonatal deaths in south Asia and sub-Saharan Africa: a multi-country prospective cohort 
study. Lancet Glob Health. 2018 Dec;6(12):e1297-e1308. 

 
 
 
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15. Moucheraud C, Worku A, Molla M, Finlay JE, Leaning J, Yamin AE. Consequences of 
maternal mortality on infant and child survival: a 25-year longitudinal analysis in Butajira, 
Ethiopia (1987-2011). Reprod Health. 2015 May 6; 12(Suppl 1), S4. 
 
 
 
 
 
 
 
 
 
 

 
 
 
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Appendix A: Variables Collected 
 
Table 6. Variables Collected 
Time Period 
Data Collection Tool 
Variables 
Admission 
Admission Variables  Maternal Age 
Refereed 
Who decided it was time to come to the hospital 
How long did it take to get to the hospital (hours) 
Mode of transport to the hospital (walk, motorcycle, private 
vehicle, ambulance, etc.) 
Date and Time of admission 
Does the woman know her approximate due date?  
How was the due date defined (LMP, not sure, ultrasound, woman 
herself, missing) 
Due date (if known) 
Admission vital signs (temperature, BP, HR) 
Were you delayed >1 hour by any of the following:  
a. Terrain (boat, swamp, flood, etc) 
b. Cost of transport 
c. General transport delay (waiting for bus, schedules, etc.) 
Admission 
Health & Pregnancy 
History 
Number of pregnancies in lifetime 
Number of pregnancies with baby born greater than 500g and 20 
weeks gestation 
Chronic health conditions before pregnancy  
HIV related details during pregnancy (new diagnosis, ARV, etc.) 
Malaria with antimalarials during pregnancy 
Conditions diagnosed during pregnancy - select all that apply 
(diabetes, pre-eclampsia, eclampsia, hypertension, antepartum 
hemorrhage/vaginal bleeding, PPROM, preterm labor, malaria, 
HIV, UTI, TB, Anemia, Other infection, None) 
Admission during pregnancy, duration (no, <28 days, >28 days), 
reason 
Taking medication for (high blood pressure, antimalarial, ARVs, 
antibiotics) 
Sought care from traditional birth attendant 
Took herbs while pregnant 
Saw a midwife, nurse, doctor for ANC care 
Number of times ANC care was sought with midwife, nurse, doctor 
Prenatal vitamins during pregnancy 

 
 
 
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Prior admissions (number of admissions, date, length of stay, self-
reported diagnosis during admission) 
UTI history, if yes:  
a. If admitted – where/when? 
b. IV antibiotics – Yes/No 
c. Other? 
Pre-delivery hematocrit 
Substance use – select all that apply (smoking, alcohol, other 
drugs) 
Did you take any of the following while pregnant: Abx, 
antimalarials, antihypertensives, ARVs, prenatal vitamins, herbs 
During your pregnancy, did you or any household member have to 
eat less food than you felt you was needed?  
Abortion history – Yes/No 
Previous caesarian section – Yes/No 
Previous infertility – Yes/No 
Known placental disorders  
Delivery 
Maternal Variables 
Date/Time of delivery 
Mode of delivery 
Episiotomy – Y/N 
Vaginal tearing and recorded degree of tearing 
Induced labour and method of induction 
PPH noted (estimated blood loss, blood transfusion needed, how 
many units of blood) 
Obstructed labour 
Meconium in amniotic fluid 
Number of babies delivered 
Number of vaginal exams (self-reported) 
Date/Time labour started 
Fetal position 
Administration of oral fluids, IV fluids, and antibiotics 
Placenta disruptions (placental previa, placental abruption) 
Number of vaginal exams 
Early or delayed cord clamping 
Delivery 
C-Section Variables 
Before anesthesia (Y/N):  
special procedures needed (central line, art line), Hb, platelet, 
glucose, magnesium, antibiotic prophylaxis (cefazolin, 
azithromycin, other) 
Before skin incision (Y/N): 
Antibiotics were given and when, plan for post-op analgesia, 
gestational age, reason for c section, pregnancy issues, 

 
 
 
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medications (anesthetics, opioids, magnesium, betamethasone, 
other), early or delayed cord clamping 
Debriefing: 
VTE prophylaxis checklist, anticoagulation and timing, 
placenta pathology, special management needed, blood 
loss, urine output, fluid intake 
 
Delivery 
Neonatal Variables 
Baby born alive 
Sex of the baby  
Apgar score 1 minute 
Apgar score 5 minutes 
Weight of the baby (kg) 
Resuscitation with oxygen therapy at birth 
Discharge 
Maternal Variables 
Have you been able to start breastfeeding 
Systolic BP 
Diastolic BP 
SpO2 
HR 
Respiratory Rate 
Temperature 
Hematocrit 
Discharge status (routine, AMA, referral, death, other)  
Symptoms at maternal interview check all that apply (headache, 
visual changes, chest pain, shortness of breath, nausea and 
vomiting, abdominal pain, foul smelling vaginal discharge, stiff 
neck, cough, difficulty emptying bladder) 
During this admission was she given antibiotics (Y/N) also add 
route (IV/PO) 
Date/Time of discharge 
Scheduled follow up date 
Lab tests conducted Y/N & results 
Intent for minimal outside contact with community for first 6 
weeks 
Discharge 
Neonatal Variables 
Baby being discharged with mom 
Disposition of baby – admitted to NICU, died, referred, other. 
Baby pooped 
Baby peed 
Length 
Head circumference 
Weight 
Temperature 

 
 
 
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 27 
SpO2 Right hand/any foot 
Date, time of discharge and follow up captured under maternal 
Discharged on antibiotics? 
Discharge 
 
Maternal 
Socioeconomic 
Variables 
 
Residence (District, Other District, Sub-county, Other Sub-County, 
Parish, Other Parish, Village, County/Constituency, Chairman 
captured) 
Number of people in household 
Number of children in household including baby 
Marital status 
Do you live with the father of the baby 
Maternal level of education (no school. P4-7, S1-6, post-secondary) 
SES Index (score out of 8), includes the following questions  
a. Finished floor material 
b. flush toilet 
c. LPG/electricity for cooking fuel 
d. improved source of drinking water (with defn) 
e. more than one room in home  
f. electricity 
g. television 
h. refrigerator 
i. 
smart phone 
j. 
car, motorbike, bicycle, truck 
Have any other of your children died – Y/N 
72-hour post-
discharge 
Maternal and 
Newborn Follow-up 
Telephone 
Interview 
Travel time from hospital to home 
Mode of transport from hospital to home  
Did the time of discharged affect trip home?  
Barriers encountered on journey home  
Patient experience measures (Likert scales – e.g., felt healthcare 
worker spent enough time preparing them for discharge, were 
things explained in a way that was easy to understand, quality of 
discharge experience, etc.) 
6 weeks post-
discharge 
Maternal Variables 
– Follow-up 
Interview 
Is the mother alive 
Did she seek care at any time after being home post delivery 
How may routine postpartum visits were made after discharge 
following birth 
Number of days after birth first PNC visit was made 
Admitted for one or more nights for any reason after being home 
with her baby post-delivery 
During admission any of the following (vaginal bleeding, abnormal 
tiredness, convulsions, shortness of breath, vision changes, severe 
headaches, abdominal pain, abdominal tenderness, foul smelling 

 
 
 
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vaginal discharge, fever/body hotness, diarrhea, vomiting 
everything, cough, loss of consciousness, other)  
Diagnosis (was she told she had pre-eclampsia, eclampsia, HIV, 
malaria, heavy bleeding, surgical site infection, puerperal sepsis, 
other infection, diarrhea, vomiting, PPD/psychosis, other) 
Admission date 
Number of nights she was in hospital due to these conditions 
Was hospital care sought prior to her death? 
Was the care sought for routine postpartum follow-up? 
How many routine postpartum visits were made after discharge 
following birth? 
How many days after birth was the first PNC visit made? 
Did mom get sick during first 6 weeks (Y/N) 
If yes, did she seek care (Y/N) 
If yes, was she re-admitted (Y/N – also how many times and when) 
During this illness, did she experience any of the following 
symptoms 
Are you based in the same home that you were in prior to delivery 
Support present during post-partum period (list: ex. mother, 
mother-in-law, etc.) 
Verbal autopsy for mothers who die 
6-week post-
discharge 
Neonatal Variables 
– Follow-up 
interview 
Is the newborn alive at the time of the follow up interview 
Did the newborn die without ever having been discharged 
following birth 
Date of death 
Place of death 
Was hospital care sought prior to their death 
How many PNC check-ups were completed after leaving the 
hospital following birth 
How many days old was his baby when the first PNC check was 
done after leaving the hospital following birth 
Was the newborn admitted for one or more nights at a facility for 
any reason after being home post-delivery? 
Number of days from discharge till readmission 
Symptoms during illness (rash, cough, diarrhea, fever/hotness of 
body, vomiting everything, abnormally sleepy, changes in urine 
colour, making less urine than usual, blood in stool, 
seizure/convulsions, yellow soles, feeding status, no symptoms, 
don’t know) 
Baby’s feeding/drinking status currently 

 
 
 
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 29 
 
 
 
 
For how many weeks after delivery was the child exclusively 
breastfed? 
Is child being exclusively or Non-exclusively breastfed 
For neonates who were readmitted were you told the child had 
(sepsis, respiratory distress, endocrine/metabolic disease, 
trauma/injury) 
Are they still in hospital due to this/these conditions 
How many nights were they in hospital due to this/these 
conditions? 
Did you seek care for the newborn at a facility at any time after 
being home post-delivery? 
Was this care for routine vaccinations or postnatal baby check-
ups? 
How many postnatal baby check ups were completed after leaving 
hospital following birth? 
How many days old was this baby when the first postnatal check 
was done after leaving hospital following birth? 
For children who died: Verbal autopsy 
Timing of PNC visits: time from discharge to PNC visit and 
subsequent visits  

 
 
 
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Appendix B: Journey Mapping Variables 
 
Table 10. Journey Mapping Data Collection 
 
 
Time Period 
Data Collection Tool 
Variables 
Admission 
Admission Variables  
Time of departure from home  
Mode of transport from home to hospital (e.g., personal vehicle, 
Boda Boda, Bus, other) 
Date of arrival at hospital  
Date of admission  
Time of admission  
Describe any barriers observed (e.g., long wait times, language 
barrier between mom and healthcare worker)   
Discharge 
Patient Interview 
Questionnaire  
Are mom and baby being discharged together?   
Date and time of discharge 
Describe any barriers observed (e.g., language barrier between 
mom and healthcare worker)  
Did mom receive discharge education, if so, types of topics 
discussed?   
Was a referral made for postnatal follow-up care? If so, when and 
where?  
If mother died during hospitalization:  
a. Date of death  
b. Who was the infant discharged to 
c. Did mom received discharge education prior to death?  
If child died during hospitalization  - Date of death  
72-hour post-
discharge 
Maternal and 
Newborn Follow-up 
Telephone Interview 
Travel time from hospital to home 
Mode of transport from hospital to home  
Did the time of discharged affect trip home?  
Barriers encountered on journey home  
Patient experience measures (Likert scales – e.g., felt healthcare 
worker spent enough time preparing them for discharge, were 
things explained in a way that was easy to understand, quality of 
discharge experience, etc.) 
Travel time from hospital to home 
6 weeks post-
discharge 
Maternal and 
Newborn Follow-up 
and Telephone 
Interview 
If postnatal care was sought, what motivated you to attend a 
follow-up visit? 
If referred but did not attend a follow-up, why not?  

 
 
 
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Appendix C: Maternal Outcomes 
 
Table 6. Maternal Causes of readmission (n=80) 
 
  
  
Admission Diagnosis 
n (%) 
Surgical site infection 
41 (51.2%) 
Puerperal sepsis 
34 (42.5%) 
Malaria 
15 (18.8%) 
Other Infection 
4 (5.0%) 
Heavy Bleeding 
2 (2.5%) 
PPD/psychosis 
2 (2.5%) 
Pre-eclampsia 
1 (1.2%) 
Eclampsia 
1 (1.2%) 
HIV 
1 (1.2%) 
Diarrhea 
1 (1.2%) 
Vomiting 
1 (1.2%) 
Other 
8 (10.0%) 
  
  
Admission Symptoms 
n (%) 
Abdominal Pain 
45 (56.2%) 
Fever (<7 days) 
34 (42.5%) 
Abdominal tenderness when touches 
32 (40.0%) 
Foul smelling vaginal discharge 
23 (28.8%) 
Severe headache (<24 hours) 
23 (28.8%) 
Abnormal tiredness 
12 (15.0%) 
Heavy Vaginal Bleeding 
7 (8.8%) 
Severe headache (>24 hours) 
5 (6.2%) 
Changes in vision  
5 (6.2%) 
Vomiting  
4 (5.0%) 
Shortness of breath 
3 (3.8%) 
Fever (>7days) 
2 (2.5%) 
Convulsions  
2 (2.5%) 
Diarrhea (<14 days) 
2 (2.5%) 
Diarrhea (>14 days) 
1 (1.2%) 
Cough (>14 days) 
1 (1.2%) 
Cough (<14 days) 
1 (1.2%) 

 
 
 
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Other  
6 (7.1%) 
Table 7. Maternal Care seeking  
 
Care seeking (n=80 readmitted+0 deaths) 
  
Did she seek care after being home with her baby post-
delivery n (%) 
  
Yes 
78 (97.5%) 
No 
2 (2.5%) 
Number of routine postpartum visits n (%) 
  
0 
4 (5.0%) 
1 
33 (41.2%) 
2 
32 (40.0%) 
≥3 
11 (13.8%) 
Number of days from birth to first postnatal care visit  
[interquartile range] 
7.00 [7.00-14.00] 
Number of days from discharge to readmission median 
[interquartile range] 
5.00 [3.00-13.5] 
 
 
Appendix D: Neonate Outcomes 
 
Table 8. Neonatal Outcomes (n=134) 
 
  
  
Readmission n=108 
n (%) 
Diagnosis 
  
Sepsis  
68 (63.0%) 
Respiratory distress   
21 (19.4%) 
Endocrine/Metabolic Disease 
2 (1.9%) 
Trauma/Injury 
2 (1.9%) 
  
  
Deaths n=26 
  
Period from delivery to death (days) median [interquartile range] 
5.00 [3.00-
14.8] 
Period from discharge to death (days) median [interquartile range] 
4.00 [1.25-
13.8] 
Location of death n (%) 
  
Home 
9 (34.6%) 
Hospital 
13 (50.0%) 

 
 
 
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En route to hospital 
4 (15.4%) 
Was hospital care sought prior to death n (%) 
  
Yes 
16 (61.5%) 
No 
10 (43.5%) 
  
  
 Symptoms (n=131) 
  
Fever/hotness of body < 7 days 
72 (55.0%) 
Cough < 14 days 
7 (5.3%) 
Fever/hotness of body > 7 days 
5 (3.8%) 
Abnormal sleeping 
5 (3.8%) 
Changes in urine color 
4 (3.1%) 
Seizure/Convulsions 
4 (3.1%) 
Diarrhea < 14 days 
3 (2.3%) 
Rash 
12 (9.2%) 
Vomiting  
10 (7.6%) 
Yellow Soles 
10 (7.6%) 
None of these symptoms 
10 (7.6%) 
Cough > 14 days 
1 (0.8%) 
Diarrhea > 14 days 
1 (0.8%) 
Less urine than usual 
1 (0.8%) 
Blood in stool 
1 (0.8%) 
Unknown 
1 (0.8%) 
  
  
 
Table 9. Neonatal Care Seeking 
Care Seeking n = 131 (108 readmitted+23 dead) 
  
Did you seek care for the newborn at a facility after being home post 
delivery n (%) 
  
Yes 
108 (82.4%) 
No 
0 (0%) 
Missing 
23 (17.6%) 
How many post natal baby check ups were completed after leaving 
hospital following birth 
  
0 
3 (2.3%) 
1 
1 (0.8%) 
2 
33 (25.2%) 
≥3 
50 (38.2%) 
Missing 
44 (33.6%) 

 
 
 
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How many days old was this baby when the first post natal check 
was done after leaving hospital following birth median [interquartile 
range] 
8.00 [3.75-
21.0] 
Number of days from discharge to readmission median [interquartile 
range] 
2.00 [0-8.00]