Facilitators and constraints to family integrated care in low-resource settings informed the adaptation in Uganda.

AIM: Family Integrated Care (FICare) was developed in high-income countries and has not been tested in resource-poor settings. We aimed to identify the facilitators and constraints that informed the adaptation of FICare to a neonatal hospital unit in Uganda. METHODS: Maternal focus groups and healthcare provider interviews were conducted at Uganda's Jinja Regional Referral Hospital in 2020. Transcripts were analysed using inductive content analysis. An adaptation team developed Uganda FICare based on the identified facilitators and constraints. RESULTS: Participants included 10 mothers (median age 28 years) and eight healthcare providers (seven female, median age 41 years). Reducing healthcare provider workload, improving neonatal outcomes and empowering mothers were identified as facilitators. Maternal stress, maternal difficulties in learning new skills and mistrust of mothers by healthcare providers were cited as constraints. Uganda FICare focused on task-shifting important but neglected patient care tasks from healthcare providers to mothers. Healthcare providers learned how to respond to maternal concerns. Intervention material was adapted to prioritise images over text. Mothers familiar with FICare provided peer-to-peer support to other mothers. CONCLUSION: Uganda FICare shares the core values of FICare but was adapted to be feasible in low-resource settings.

Benefits and Challenges of Implementing an Adaptation of Family Integrated Care in a Ugandan Setting.

BACKGROUND: Family Integrated Care (FICare) integrates parents as partners in neonatal intensive care unit care. Our team adapted and implemented this approach in a Ugandan unit for hospitalized neonates. PURPOSE: This qualitative descriptive study examined the perceptions of mothers and healthcare professionals (HCPs) of the benefits and challenges of this new approach to care. METHODS: Fifty-one mothers of hospitalized neonates born weighing greater than 2000 g participated in the program. They were taught to assess neonate danger signs, feeding, and weight. After discharge, a subsample (n = 15) participated in focus groups to explore benefits and challenges of their participation in care. Interviews with 8 HCPs were also conducted for the same purpose. Transcripts from focus groups and interviews were analyzed using inductive content analysis to describe the benefits and challenges from the perspectives of mothers and HCPs. RESULTS: For mothers a benefit was decreased stress. Both mothers and HCPs reported that the knowledge and skills mothers acquired were a benefit as was their ability to apply these to the care of their neonate. Improved relations between mothers and HCPs were described, characterized by greater exchange of information and HCPs' attentiveness to mothers' assessments. Mothers felt ready for discharge and used their knowledge at home. HCPs noted a decrease in their workload. Challenges included the need for mothers to overcome fears about performing the tasks, their own well-being and literacy skills, and access to equipment. IMPLICATIONS FOR PRACTICE: Mothers' participation in their neonates' care can have benefits for them and their neonate.

NeoConnect: The Design, Implementation, and Impact of a Virtual Family-Centered NICU Program.

BACKGROUND: Familial involvement in the neonatal intensive care unit (NICU) reduces parental stress and strengthens parental-infant bonding. However, parents often face barriers to in-person visitation. The coronavirus disease-2019 COVID-19 pandemic has exacerbated limitations to parental bedside presence. OBJECTIVE: To design, implement, and evaluate a technology-based program to connect NICU babies with their families during the COVID-19 pandemic. METHODS: We created NeoConnect at our level IV NICU, which included parental audio recordings and video chats between parents and their babies. Parental and NICU staff input on NeoConnect was gathered via preimplementation surveys. Inaugural families and staff members completed a postparticipation survey. RESULTS: Prior to implementation, all parents who were surveyed (n = 24) wished they could be more involved in their baby's care. In the first 3 months of NeoConnect, 48 families participated in the audio recording project and 14 families participated in the video chat initiative. Following implementation, 85% of surveyed staff (28/33) reported that the patients became calmer when listening to their parents' recorded voice and 100% of surveyed parents (6/6) reported that video chats reduced their stress level. CONCLUSION: Harnessing technology as a tool to increase parental involvement in the NICU is feasible and beneficial for NICU patients and their families.

Community-based antibiotic delivery for possible serious bacterial infections in neonates in low- and middle-income countries.

BACKGROUND: The recommended management for neonates with a possible serious bacterial infection (PSBI) is hospitalisation and treatment with intravenous antibiotics, such as ampicillin plus gentamicin. However, hospitalisation is often not feasible for neonates in low- and middle-income countries (LMICs). Therefore, alternative options for the management of neonatal PSBI in LMICs needs to be evaluated. OBJECTIVES: To assess the effects of community-based antibiotics for neonatal PSBI in LMICs on neonatal mortality and to assess whether the effects of community-based antibiotics for neonatal PSBI differ according to the antibiotic regimen administered. SEARCH METHODS: We used the standard search strategy of Cochrane Neonatal to search the Cochrane Central Register of Controlled Trials (CENTRAL 2018, Issue 3), MEDLINE via PubMed (1966 to 16 April 2018), Embase (1980 to 16 April 2018), and CINAHL (1982 to 16 April 2018). We also searched clinical trials databases, conference proceedings, and the reference lists of retrieved articles for randomised controlled trials (RCTs) and quasi-randomised trials. SELECTION CRITERIA: We included randomised, quasi-randomised and cluster-randomised trials. For the first comparison, we included trials that compared antibiotics which were initiated and completed in the community to the standard hospital referral for neonatal PSBI in LMICs. For the second comparison, we included trials that compared simplified antibiotic regimens which relied more on oral antibiotics than intravenous antibiotics to the standard regimen of seven to 10 days of injectable penicillin/ampicillin with an injectable aminoglycoside delivered in the community to treat neonatal PSBI. DATA COLLECTION AND ANALYSIS: We extracted data using the standard methods of the Cochrane Neonatal Group. The primary outcomes were all-cause neonatal mortality and sepsis-specific neonatal mortality. We used the GRADE approach to assess the quality of evidence. MAIN RESULTS: For the first comparison, five studies met the inclusion criteria. Community-based antibiotic delivery for neonatal PSBI reduced neonatal mortality when compared to hospital referral only (typical risk ratio (RR) 0.82, 95% confidence interval (CI) 0.68 to 0.99; 5 studies, n = 125,134; low-quality evidence). There was, however, a high level of statistical heterogeneity (I² = 87%) likely, due to the heterogenous nature of the study settings as well as the fact that four of the studies provided various co-interventions in conjunction with community-based antibiotics. Community-based antibiotic delivery for neonatal PSBI showed a possible effect on reducing sepsis-specific neonatal mortality (typical RR 0.78, 95% CI 0.60 to 1.00; 2 studies, n = 40,233; low-quality evidence).For the second comparison, five studies met the inclusion criteria. Using a simplified antibiotic approach resulted in similar rates of neonatal mortality when compared to the standard regimen of seven days of injectable procaine benzylpenicillin and injectable procaine benzylpenicillin and injectable gentamicin delivered in community-settings for neonatal PSBI (typical RR 0.81, 95% CI 0.44 to 1.50; 3 studies, n = 3476; moderate-quality evidence). In subgroup analysis, the simplified antibiotic regimen of seven days of oral amoxicillin and injectable gentamicin showed no difference in neonatal mortality (typical RR 0.84, 95% CI 0.47 to 1.51; 3 studies, n = 2001; moderate-quality evidence). Two days of injectable benzylpenicillin and injectable gentamicin followed by five days of oral amoxicillin showed no difference in neonatal mortality (typical RR 0.88, 95% CI 0.29 to 2.65; 3 studies, n = 2036; low-quality evidence). Two days of injectable gentamicin and oral amoxicillin followed by five days of oral amoxicillin showed no difference in neonatal mortality (RR 0.67, 95% CI 0.24 to 1.85; 1 study, n = 893; moderate-quality evidence). For fast breathing alone, seven days of oral amoxicillin resulted in no difference in neonatal mortality (RR 0.99, 95% CI 0.20 to 4.91; 1 study, n = 1406; low-quality evidence). None of the studies in the second comparison reported the effect of a simplified antibiotic regimen on sepsis-specific neonatal mortality. AUTHORS' CONCLUSIONS: Low-quality data demonstrated that community-based antibiotics reduced neonatal mortality when compared to the standard hospital referral for neonatal PSBI in resource-limited settings. The use of co-interventions, however, prevent disentanglement of the contribution from community-based antibiotics. Moderate-quality evidence showed that simplified, community-based treatment of PSBI using regimens which rely on the combination of oral and injectable antibiotics did not result in increased neonatal mortality when compared to the standard treatment of using only injectable antibiotics. Overall, the evidence suggests that simplified, community-based antibiotics may be efficacious to treat neonatal PSBI when hospitalisation is not feasible. However, implementation research is recommended to study the effectiveness and scale-up of simplified, community-based antibiotics in resource-limited settings.

Family Integrated Care in Uganda: a feasibility study.

OBJECTIVE: To determine the feasibility of adapting Family Integrated Care to a neonatal hospital unit in a low-income country. DESIGN: Single-centre, pre/post-pilot study of an adapted Family Integrated Care programme in Uganda (UFICare). SETTING: Special Care Nursery at a Ugandan hospital. PATIENTS: Singleton, inborn neonates with birth weight ≥2 kg. INTERVENTIONS: As part of UFICare, mothers weighed their infant daily, assessed for severe illness ('danger signs') twice daily and tracked feeds. MAIN OUTCOME MEASURES: Feasibility outcomes included maternal proficiency and completion of monitoring tasks. Secondary outcomes included maternal stress, discharge readiness and post-discharge healthcare seeking. RESULTS: Fifty-three mother-infant dyads and 51 mother-infant dyads were included in the baseline and intervention groups, respectively. Most mothers were proficient in the tasks 2-4 days after training (weigh 43 of 51; assess danger signs 49 of 51; track feeds 49 of 51). Mothers documented their danger sign assessments 82% (IQR 71-100) of the expected times and documented feeds 83% (IQR 71-100) of hospital days. In the baseline group, nurses weighed babies 29% (IQR 18-50) of hospitalised days, while UFICare mothers weighed their babies 71% (IQR 57-80) of hospitalised days (p<0.001). UFICare mothers had higher Readiness for Discharge scores compared with the baseline group (baseline 6.8; UFICare 7.9; p<0.001). There was no difference in maternal stress scores or post-discharge healthcare seeking. CONCLUSIONS: Ugandan mothers can collaborate in the medical care of their hospitalised infant. By performing tasks identified as important for infant care, mothers felt more prepared to care for their infant at discharge.

Transitions from hospital to home: A mixed methods study to evaluate pediatric discharges in Uganda.

The World Health Organization (WHO) Integrated Management of Childhood Illness (IMCI) guidelines recognize the importance of discharge planning to ensure continuation of care at home and appropriate follow-up. However, insufficient attention has been paid to post discharge planning in many hospitals contributing to poor implementation. To understand the reasons for suboptimal discharge, we evaluated the pediatric discharge process from hospital admission through the transition to care within the community in Ugandan hospitals. This mixed methods prospective study enrolled 92 study participants in three phases: patient journey mapping for 32 admitted children under-5 years of age with suspected or proven infection, discharge process mapping with 24 pediatric healthcare workers, and focus group discussions with 36 primary caregivers and fathers of discharged children. Data were descriptively and thematically analyzed. We found that the typical discharge process is often not centered around the needs of the child and family. Discharge planning often does not begin until immediately prior to discharge and generally does not include caregiver input. Discharge education and counselling are generally limited, rarely involves the father, and does not focus significantly on post-discharge care or follow-up. Delays in the discharge process itself occur at multiple points, including while awaiting a physical discharge order and then following a discharge order, mainly with billing or transportation issues. Poor peri-discharge care is a significant barrier to optimizing health outcomes among children in Uganda. Process improvements including initiation of early discharge planning, improved communication between healthcare workers and caregivers, as well as an increased focus on post-discharge care, are key to ensuring safe transitions from facility-based care to home-based care among children recovering from severe illness.

Verbal Autopsy to Assess Postdischarge Mortality in Children With Suspected Sepsis in Uganda.

BACKGROUND: Reducing child mortality in low-income countries is constrained by a lack of vital statistics. In the absence of such data, verbal autopsies provide an acceptable method to determining attributable causes of death. The objective was to assess potential causes of pediatric postdischarge mortality in children younger than age 5 years (under-5) originally admitted for suspected sepsis using verbal autopsies. METHODS: Secondary analysis of verbal autopsy data from children admitted to 6 hospitals across Uganda from July 2017 to March 2020. Structured verbal autopsy interviews were conducted for all deaths within 6 months after discharge. Two physicians independently classified a primary cause of death, up to 4 alternative causes, and up to 5 contributing conditions using the Start-Up Mortality List, with discordance resolved by consensus. RESULTS: Verbal autopsies were completed for 361 (98.6%) of the 366 (5.9%) children who died among 6191 discharges (median admission age: 5.4 months [interquartile range, 1.8-16.7]; median time to mortality: 28 days [interquartile range, 9-74]). Most deaths (62.3%) occurred in the community. Leading primary causes of death, assigned in 356 (98.6%) of cases, were pneumonia (26.2%), sepsis (22.1%), malaria (8.5%), and diarrhea (7.9%). Common contributors to death were malnutrition (50.5%) and anemia (25.7%). Reviewers were less confident in their causes of death for neonates than older children (P < .05). CONCLUSIONS: Postdischarge mortality frequently occurred in the community in children admitted for suspected sepsis in Uganda. Analyses of the probable causes for these deaths using verbal autopsies suggest potential areas for interventions, focused on early detection of infections, as well as prevention and treatment of underlying contributors such as malnutrition and anemia.

Home-based management of neonatal sepsis: 23 years of sustained implementation and effectiveness in rural Gadchiroli, India, 1996-2019.

INTRODUCTION: Although hospitalisation remains the preferred management for neonatal sepsis, it is often not possible in resource-limited settings. The Home-Based Newborn Care (HBNC) study in Gadchiroli, India (1995-1998) was the first trial to demonstrate that neonatal sepsis can be managed in the community. HBNC continues to operate in Gadchiroli. In 2015, WHO recommended community-based management of neonatal sepsis when hospitalisation is not feasible but called for implementation research. We studied the implementation and effectiveness of home-based management of neonatal sepsis over 23 years in Gadchiroli. METHODS: In this cohort study (1996-2019), community health workers (CHWs) visited neonates at home in 39 villages in Gadchiroli, India. CHWs screened, diagnosed sepsis and offered home-based antibiotic treatment if hospitalisation was refused. We evaluated the implementation outcomes of coverage, diagnostic fidelity and adoption. We assessed the association between treatment type and odds of neonatal death using mixed effects logistic regression. Time trends were analysed using the Mann-Kendall test. RESULTS: CHWs screened 93.8% (17 700/18 874) of neonates (coverage) and correctly diagnosed 89% (1051/1177) of sepsis episodes (diagnostic fidelity). Home-based management was preferred by 88.4% (929/1051) of parents (adoption), with 5.6 percent of total neonates receiving antibioties at home. Compared with neonates treated at home, the adjusted odds of death was 5.27 (95% CI 1.91 to 14.58) times higher when parents refused all treatment, 2.17 (95% CI 1.07 to 4.41) times higher when CHWs missed the diagnosis and 5.45 (95% CI 2.74 to 10.87) times higher when parents accepted hospital referral. Implementation outcomes remained consistent over 23 years (coverage p=0.57; fidelity p=0.57; adoption p=0.26; mortality p=0.71). The rate of facility births increased (p<0.01) and the sepsis incidence decreased (p<0.05) over 23 years. CONCLUSION: Implementation of home-based management of neonatal sepsis was sustainable and effective over 23 years. During this period, the need for home-based management in Gadchiroli is declining. Home-based management is advised where sepsis remains a major cause of neonatal mortality and hospital access is limited.

Parental participation in the care of hospitalized neonates in low- and middle-income countries: A systematic review and meta-analysis.

Introduction: To determine the effect of parental participation in hospital care on neonatal and parental outcomes in low- and middle-income countries (LMICs) and to identify the range of parental duties in the care of hospitalized neonates in LMICs. Methods: We searched CINAHL, CENTRAL, LILACs, MEDLINE, EMBASE and Web of Science from inception to February 2022. Randomized and non-randomized studies from LMICs were eligible if parents performed one or more roles traditionally undertaken by healthcare staff. The primary outcome was hospital length-of-stay. Secondary outcomes included mortality, readmission, breastfeeding, growth, development and parental well-being. Data was extracted in duplicate by two independent reviewers using a piloted extraction form. Results: Eighteen studies (eight randomized and ten non-randomized) were included from seven middle-income countries. The types of parental participation included hygiene and infection prevention, feeding, monitoring and documentation, respiratory care, developmental care, medication administration and decision making. Meta-analyses showed that parental participation was not associated with hospital length-of-stay (MD -2.35, 95% CI -6.78-2.07). However, parental involvement was associated with decreased mortality (OR 0.46, 95% CI 0.22-0.95), increased breastfeeding (OR 2.97 95% CI 1.65-5.35) and decreased hospital readmission (OR 0.36, 95% CI 0.16-0.81). Narrative synthesis demonstrated additional benefits for growth, short-term neurodevelopment and parental well-being. Ten of the eighteen studies had a high risk of bias. Conclusion: Parental participation in neonatal hospital care is associated with improvement in several key neonatal outcomes in middle-income countries. The lack of data from low-income countries suggests that there remains barriers to parental participation in resource-poor settings. Systematic review registration: [https://www.crd.york.ac.uk/prospero/display_record.php?RecordID=187562], identifier [CRD42020187562].

Decline in the Incidence of Neonatal Sepsis in Rural Gadchiroli, India During the Twenty-one Years (1998-2019) Following the Home-based Neonatal Care Field-trial.

BACKGROUND: Sepsis is a leading cause of neonatal mortality globally. The home-based neonatal care (HBNC) field trial (1995-1998) in rural Gadchiroli demonstrated a reduction in the incidence of neonatal sepsis. The current study examines the trend of neonatal sepsis during the twenty-one years (1998-2019) following the trial's completion. METHODS: We conducted a retrospective cohort study based on the HBNC program data in rural Gadchiroli, India, from April 1998 to March 2019. All live-born neonates who spent all or part of the neonatal period in the 39 study villages and received HBNC were eligible for inclusion. Sepsis was diagnosed during regular home visits by trained village health workers if pre-specified clinical criteria were present. Sepsis incidence was computed for seven 3-year periods. Trend analyses were conducted using the Mann-Kendall test. RESULTS: Of the total 17,289 live births, 16,339 (94.5%) home visited were included. In this cohort, 1069 (65 per 1000 live births) neonates were diagnosed with sepsis. The incidence of neonatal sepsis declined from 111 per 1000 live births in 1998 to 2001 to 19 per 1000 live births in 2016 to 2019, an 82.9% decrease (P < 0.0001), mean 4% decrease per year. The incidence of neonatal sepsis declined for early-onset sepsis (P < 0.0001), late-onset sepsis (P < 0.0001), home births (P = 0.006), facility births (P < 0.0001), preterm neonates (P < 0.0001) and full-term neonates (P < 0.0001). CONCLUSIONS: The incidence of neonatal sepsis in rural Gadchiroli has continued to decline during the past twenty-one years. We hypothesize that the decline is due to the ongoing practice of HBNC, improved socioeconomic conditions, and new governmental health policies.

Effect of an integrated neonatal care kit on cause-specific neonatal mortality in rural Pakistan.

BACKGROUND: In 2018, Pakistan had the world's highest neonatal mortality rate. Within Pakistan, most neonatal deaths occur in rural areas where access to health facilities is limited, and robust vital registration systems are lacking. To improve newborn survival, there is a need to better understand the causes of neonatal death in high burden settings and engage caregivers in the promotion of newborn health. OBJECTIVE: To describe the causes of neonatal death in a rural area in Pakistan and to estimate the effect of an integrated neonatal care kit (iNCK) on cause-specific neonatal mortality. METHODS: We analyzed data from a community-based, cluster-randomized controlled trial of 5286 neonates in Rahim Yar Khan (RYK), Punjab, Pakistan between April 2014 and August 2015. In intervention clusters, Lady Health Workers (LHW) delivered the iNCK and education on its use to pregnant women while control clusters received the local standard of care. The iNCK included interventions to prevent and identify signs of infection, identify low birthweight (LBW), and identify and manage hypothermia. Verbal autopsies were attempted for all deaths. The primary outcome was cause-specific neonatal mortality. RESULTS: Verbal autopsies were conducted for 84 (57%) of the 147 reported neonatal deaths. The leading causes of death were infection (44%), intrapartum-related complications (26%) and prematurity/LBW (20%). There were no significant differences in neonatal mortality due to prematurity/LBW (RR 0.43; 95% CI 0.15-1.24), infection (RR 1.10; 95% CI 0.58-2.10) or intrapartum-related complications (RR 1.04; 95% CI 0.0.45-2.41) among neonates who died in the intervention arm compared to those who died in the control arm. CONCLUSION: The major causes of neonatal deaths in RYK, Pakistan mirror the global landscape of neonatal deaths. The iNCK did not significantly reduce any cause-specific neonatal mortality.

Non-immune Hydrops Fetalis and Hepatic Dysfunction in a Preterm Infant With Congenital Syphilis.

We report a case of a preterm infant with congenital syphilis who presented with non-immune hydrops fetalis. Hepatic dysfunction was present at birth and acutely worsened following antibiotic administration. Placental pathology demonstrated infiltration with numerous spirochetes. Although critically ill, the infant recovered with intravenous penicillin G and supportive care. This case demonstrates that congenital syphilis remains a contemporary disease demanding enhanced awareness from clinicians. Manifestations evident in utero or in the newborn can be severe and may result in fetal demise or neonatal death. Moreover, we hypothesize that the treatment resulted in a Jarisch-Herxheimer reaction as manifested by the hepatic deterioration. The incidence of congenital syphilis and its associated complications can be greatly reduced with strict adherence to universal prenatal testing and comprehensive follow-up.

Opportunities and Challenges in Global Perinatal Research.

BACKGROUND: The global plight of stillbirths and neonatal mortality is concentrated in low- and middle-income countries. The ambitious targets introduced by the World Health Organization in the Every Newborn Action Plan demand a commitment to research that promotes equitable perinatal outcomes. OBJECTIVES: The aim of this review was to understand the opportunities for global perinatal research and the accompanying challenges. METHODS: We conducted a literature search to identify research prioritization exercises from 2014 to 2018 pertaining to global perinatal health. The top 50 questions with the highest research prioritization scores were extracted and analyzed. RESULTS: The greatest priorities centered on community-based, implementation research targeting major causes of stillbirth and neonatal mortality in low-resource settings. The priorities are saddled with prerequisite conditions, design obstacles, and ethical considerations that require attention. CONCLUSIONS: While the challenges are undeniable, the need to make the perinatal period healthier for babies worldwide has never been clearer.