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Background: Psychiatric genomic research is a growing field of research in Africa that is looking at epigenetics of psychiatric disorders; within which a specific focus is neurodevelopmental disorders including intellectual disability (ID). Conducting this type of research is important to identify etiologies and possible interventions or areas for further research. However, genomic research generally, and psychiatric genomic research, faces many social, ethical, cultural, and legal issues; research involving people with ID is particularly challenging. All research stakeholders - researchers, research review bodies, regulators, patient groups - generally agree that involving people with ID require several considerations, including extra protection. It is also recognized that not involving people with ID in research that is relevant to them means that opportunities to learn on specific issues including lived experiences are missed. In this scoping review, we aim to describe the range of ethical and social-cultural issues concerning involvement of people with intellectual disability in genomic research from existing literature. Methods: This scoping review will be conducted based on the Joanna Briggs Institute guidance for scoping review and reported using the PRISMA-ScR guidelines. Iterative review stages will include systematic search of six databases (Embase, Ovid Global Health, PubMed, Scopus, PsycInfo and Web of Science core collection), screening, charting and synthesis of the data. Forward and backward citation screening will also be done for the articles included in the final review. We will include peer reviewed journal articles, guidance documents and reports. Screening and selection of studies based on the eligibility criteria will be done independently by three reviewers; conflicts will be resolved through discussion with a third reviewer and other experts. Results: The results will be included in the scoping review publication. Conclusions: This scoping review will identify key areas of ethical tensions and possible solutions and inform opportunities for empirical ethics studies.
RESUMO
Background : Prioritisation of research activities for infectious disease pathogens is usually undertaken through the identification of important research and knowledge gaps. Research prioritisation is an essential element of both effective responses to disease outbreaks and adequate preparedness. There is however currently no published mapping of activities on and evidence from research prioritisation for high consequence pathogens. The objectives of this review are to map all published research prioritisation exercises on high-consequence pathogens; provide an overview of methodologies employed for prioritising research for these pathogens; describe monitoring and evaluation processes for research areas prioritised; and identify any standards and guidance for effectively undertaking research prioritisation activities for high consequence pathogens. Methods: The Joanna Briggs Institute guidance of scoping review conduct will be used. The search will be undertaken using the key terms of "research prioritisation", "response", "control", and related terms, and a list of high-consequence pathogens derived from WHO (2020), EMERGE (2019), Europe CDC (2022) and the Association of Southeast Asian Nations (2021). We will search WHO Global Index Medicus; Ovid Medline; Ovid Embase; Ovid Global Health; and Scopus. Backward citations review of the included full text documents will also be conducted. Google Scholar and Overton will be searched for grey literature. Two independent reviewers will screen the retrieved documents using Rayyan and extract data in a data extraction template in Microsoft Excel 2021. Screening results will be presented using the PRISMA-ScR template with narrative synthesis undertaken for the extracted data. Conclusion: This review will map existing research priorities for high consequence pathogens. Further, it will provide an understanding of methodologies used for prioritisation, processes for monitoring and evaluation of progress made against research agendas, and evidence on standards that could be recommended for effective prioritisation of research for high consequence pathogens.
RESUMO
BACKGROUND: The 2013 updated guidelines on management of severe acute malnutrition in infants and children recommends the support of exclusive breastfeeding. These guidelines are inconsistently applied in low and middle income countries (LMICs) due to barriers including unclear implementation guides, technical support and epidemiological factors. Peer support strategies have been used to offer psychological support to families with infants in NICU and improve mental health outcomes. Breastfeeding peer supporters (BFPS) have been shown to be effective in improving breastfeeding outcomes in community settings however, their success within hospital settings in LMICs is unknown. We conducted a scoping review to explore implementation of breastfeeding peer support strategies as have been applied to hospitalized infants globally and highlight their implementation strategies in order to guide future research and practice. METHODS: A scoping review of the literature was conducted using the Arksey and O'Malley framework. A search was conducted in five online databases (PubMed, Cochrane library, Hinari, Google Scholar and Open Grey library). Data were extracted and charted in data extraction tables to capture general characteristics, modes of peer support delivery, implementation details and evaluation procedures. RESULTS: From the online search 276 articles were identified, however only 18 met the inclusion criteria for the study. The majority of these articles were reports on in-patient breastfeeding peer support interventions applied in Europe and the United States of America and only two were from LMICs. The articles described peer supporters' identification, training (n = 13) and supervision (n = 14). The majority of the BFPS were employed (n = 10) compared to volunteers (n = 3) and support was mainly one-to-one (n = 11) rather than group support. Process and impact evaluation (n = 13) reported positive breastfeeding outcomes associated with breastfeeding peer support. CONCLUSION: Breastfeeding peer support strategies are applied in different hospital settings and can be used to improve breastfeeding outcomes. However, to achieve integration, scalability and comparability of impact and outcomes, there is a need to standardize training, develop consistent implementation and supervision plans of in-patient peer supporters' strategies. Further research to assess sustainability and evaluate cost-effectiveness of in-patient breastfeeding peer support strategies will improve uptake and scalability of these potentially lifesaving interventions.
