Post-discharge frameworks and protocols for newborns affected by preterm birth and or hypoxic ischemic encephalopathy Globally: A scoping review

7.1.2 Introduction Newborn health remains a critical concern in sub-Saharan Africa, with preterm birth and birth asphyxia being significant contributors to newborn morbidity and mortality(1). While in-hospital care for these conditions has improved, the post-discharge period presents unique challenges that are often overlooked (2). The transition from hospital to home is a critical phase in the care continuum for neonates affected by preterm birth and birth asphyxia, requiring specialized attention and follow-up to ensure optimal outcomes. Despite the importance of post-discharge care, there is a lack of standardized guidelines tailored to the specific needs of these vulnerable infants in resource-limited settings(3). This gap in care protocols potentially compromises the long-term health and development of affected newborns, highlighting the need for a comprehensive understanding of existing practices and guidelines. This scoping review aims to address this knowledge gap by systematically examining the current landscape of post-discharge guidelines for newborns previously admitted for birth asphyxia and/or prematurity in sub-Saharan Africa. By conducting a thorough literature review, this study seeks to identify, analyze, and synthesize existing guidelines, protocols, and best practices in post-hospitalization care for these high-risk infants. The findings of this review will serve as a foundation for developing standardized, context-appropriate protocols for post-discharge care in resource-limited environments. Such protocols are essential for ensuring continuity of care, reducing readmission rates, and improving long-term outcomes for newborns affected by preterm birth and birth asphyxia in sub-Saharan Africa. 7.1.3 Background information The care of premature infants and those affected by birth asphyxia is indeed a critical issue in newborn health, especially in sub-Saharan Africa where resources are often limited. Interventions such as obstetric care, newborn resuscitation, and treatment of asphyxiated infants, as well as care for preterm births including corticosteroids and continuous positive air pressure, have been identified as impactful in reducing neonatal mortality (1). However, the challenge of early detection and timely treatment of conditions like CMV infections in newborns further complicates care in these settings(4). Interestingly, while some interventions are available, their implementation is hindered by various factors including infrastructure, training, and financial constraints. For instance, the economic burden on families for hospital-based care is significant, with families spending a considerable portion of their annual income on acute care for conditions like perinatal asphyxia and preterm/low birth weight (5). Moreover, the psychosocial and emotional stress on mothers, as well as the varied knowledge and expectations regarding preterm birth, highlight the complexity of the care required for these infants(6). There are known interventions that can significantly reduce newborn mortality from birth asphyxia and preterm births(7-9), the implementation of these interventions in sub-Saharan Africa is challenged by economic, infrastructural, and educational barriers. Addressing these challenges requires a multifaceted approach that includes improving infrastructure, training healthcare providers, supporting families financially and emotionally, and enhancing early detection and treatment of neonatal conditions(4-6). The scoping review by Maraschin et al. done in 2023 (3) underscores the critical care needs of infant’s post-surgery for congenital conditions, highlighting the necessity for monitoring, feeding, and specific care practices. However, it also reveals a significant gap in the literature, with most studies conducted in high-income countries (HICs), leaving a dearth of information applicable to low- and middle-income countries (LMICs) where the burden of congenital anomalies is highest. This gap indicates a lack of standardized guidelines tailored to the specific needs of these vulnerable infants in resource-limited areas(3). Interestingly, while Kaur et al. in their study conducted in 2023 (10) and Clair et al. conducted in 2014 (11) discuss the barriers to quality of care and the potential of simple, low-cost interventions in low-resource settings, they do not provide concrete guidelines for post-discharge care. Daga in 2021 (12) critiques the WHO guidelines on newborn health, suggesting that they may not be adequately tailored to low-resource contexts, and Ortiz et al. in 2013 (13) emphasizes the need for syndromic management strategies that are feasible in resource-limited settings. These insights suggest that while there is recognition of the need for context-specific guidelines, actual implementation remains a challenge. The literature indicates a clear need for standardized post-discharge care guidelines that are specifically designed for resource-limited settings. The lack of such guidelines is a significant barrier to providing adequate care for vulnerable infants in these areas. To address this gap, there is a need for more research focused on LMICs and the development of context-specific, evidence-based guidelines that can be feasibly implemented in resource-constrained environments. 7.1.4 Objective of the scoping review 1.To conduct a scoping literature review of current post-hospital discharged guidelines for newborns previously admitted for prematurity and/or hypoxic ischemic encephalopathy in sub-Saharan Africa 7.1.5 Significance The proposed scoping review aims to investigate post-discharge guidelines and protocols for neonates affected by preterm birth and birth asphyxia in sub-Saharan Africa. This study is significant as it seeks to identify existing guidelines for post-hospitalization care of these vulnerable infants, with the ultimate goal of developing standardized protocols suitable for implementation in resource-limited settings. The findings from this review will contribute to improving the quality of care for neonates in sub-Saharan Africa, potentially reducing morbidity and mortality rates associated with preterm birth and birth asphyxia. 7.1.6 Research Question What are the essential components of an effective post-hospitalisation care framework for high-risk neonates (preterm and or hypoxic ischemic encephalopathy babies) that can be feasibly implemented in resource-constrained environments? Our research question was Brocken down following PCC according to JBI scoping review methodology. Below is the table illustrating the breakdown of the PCC. Framework item Framework activity Population Infants under one years of age who are classified as high-risk, having experienced premature birth and/or hypoxic ischemic encephalopathy, and who necessitated hospitalisation within their initial week of life. (first four weeks) Concept Protocols or structures that delineate the post-hospital care for infants under one years of age who have experienced birth asphyxia and premature birth, and who were admitted to hospital within their initial week of life (four weeks from birth) Context Sub-Saharan African countries 7.1.7 Study design The study design follows a rigorous methodology, combining the JBI scoping review approach (14, 15) with Hong et al.'s methodological enhancement(16). This comprehensive framework consists of five key phases: formulating the research question, identifying relevant studies, selecting appropriate studies, extracting data, and collating, summarizing, and reporting the findings. By adhering to this structured approach, the researchers ensure a systematic and thorough review of the available literature. Additionally, the study will comply with the Preferred Reporting Items for Systematic reviews and Meta-Analyses for scoping reviews (PRISMA-ScR) guidelines, further enhancing the transparency and reproducibility of the review process. This methodological rigor will strengthen the validity and reliability of the study's findings, providing a solid foundation for future research and policy development in neonatal care within sub-Saharan Africa 7.1.8 Identifying relevant studies Comprehensive literature reviews will be conducted, encompassing research published from 2014 to 2024. These systematic searches will employ multiple databases, including PubMed, SCOPUS, Web of Science, EBSCOhost (incorporating Medline and CINAHL), Science Direct, and Google Scholar. Furthermore, grey literature sources will be examined, comprising reports, conference proceedings, working papers, governmental documents, theses, dissertations, and unpublished data from organisations and institutions. The principal investigator will devise and implement the search strategy, collaborating with a subject matter expert and an information specialist for requisite support. The following keywords will be used in this review: 1. Population: - Neonate*, newborn*, infant*; - Preterm, premature, low birth weight; - Birth asphyxia, perinatal asphyxia, hypoxic-ischemic encephalopathy. 2. Intervention/Focus: - Post-discharge, follow-up, aftercare; - Guideline*, protocol*, care plan*, best practice*; - Transition of care, continuity of care. 3. Condition: - Infant, Premature (MesH); - Birth asphyxia (Asphyxia Neonatorum (MeSH). 4. Setting: - Sub-Saharan Africa, African countries; - Resource-limited, low-income, developing. Global 5. Outcome: - Morbidity, mortality, survival; - Neurodevelopment*, growth, health outcome*. These terms will be combined as follows: (Neonate* OR newborn* OR infant*) AND (preterm OR premature OR "birth asphyxia") AND ("post-discharge" OR follow-up OR aftercare) AND (guideline* OR protocol* OR "care plan*") AND ("Sub-Saharan Africa" OR [list of specific countries] 7.1.9 Selection of studies The scoping review adhered to predefined inclusion and exclusion criteria to ensure accurate identification and selection of relevant articles. Inclusion criteria Research will be deemed eligible if it examines neonatal care practices for infants under 2 years in sub-Saharan African countries, is published in English, and has been disseminated within the past decade, incorporating post-discharge care protocols and guidelines for infants under two years of age. Exclusion criteria The exclusion criteria will eliminate studies that do not explicitly address newborn care for infants younger than 2 years, are conducted outside the specified geographical region, fail to meet rigorous methodological standards, or lack post-discharge protocols or guidelines and are reviews. Relevant articles will be extracted from the health database and imported into ENDNOTE 20, a reference management tool, for organisation. Subsequently, two independent reviewers will examine the abstracts to determine which articles should be included or excluded. Any discrepancies in their assessments will be resolved through discussion. Following this initial stage, a comprehensive screening of full-text articles will be conducted to confirm eligibility. Should any disputes arise during the full-article review, a third reviewer will be consulted to mediate. The degree of concordance between reviewers after full-article screening will be evaluated using Cohen's kappa statistic. The interpretation criteria will be as follows: values ≤ 0 indicating no agreement, 0.01–0.20 indicating slight agreement, 0.21–0.40 denoting fair agreement, 0.41– 0.60 representing moderate agreement, 0.61–0.80 suggesting substantial agreement, and 0.81–1.00 indicating almost perfect agreement. 7.1.10 Data charting The principal investigator will develop a data extraction form, which will encompass various elements: bibliographic information (author, year, title), study characteristics (objective, country, methodology, setting), participant data, preterm birth and birth asphyxia, primary outcome protocol, post-discharge care follow-up and other pertinent observations. Two reviewers (Chancy Chimatilo and Precious Hajison) will evaluate this form to assess its suitability. Subsequent to their evaluation, they will determine whether the form adequately captures all relevant information for the study, and consequently, no modifications will be deemed necessary. 7.1.11 Analysis and Presentation of Results The findings from the scoping review will be subjected to both quantitative and qualitative analysis. Quantitative outcomes will be presented utilising tables and figures, whilst qualitative data will be organised into thematic summaries derived from the literature search. 7.1.12 Appraisal of quality evidence The Mixed Method Appraisal Tool (MMAT) version 2018 (16) will be utilised to evaluate the quality of the selected articles. Two independent reviewers will conduct the quality assessment process, employing percentage ratings to categorise the evidence quality: (a) scores below 50% indicate low-quality evidence, (b) scores between 50-75% denote moderate-quality evidence, and (c) scores ranging from 75-100% signify high-quality evidence. 7.1.13 Ethical Clearance Given that this scoping review will not involve human subjects, ethical approval is not necessitated. The review will be conducted for academic purposes at the University of Pretoria.