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  • Research ethics and refugee health: a review of reported considerations and applications in published refugee health literature, 2015-2018

    Emma E. Seagle; Amanda J. Dam; Priti P. Shah; Jessica L. Webster; Drue H. Barrett; Leonard W. Ortmann; Nicole J. Cohen; Nina N. Marano (BMC, 2020-06-01)
    Abstract Introduction Public health investigations, including research, in refugee populations are necessary to inform evidence-based interventions and care. The unique challenges refugees face (displacement, limited political protections, economic hardship) can make them especially vulnerable to harm, burden, or undue influence. Acute survival needs, fear of stigma or persecution, and history of trauma may present challenges to ensuring meaningful informed consent and establishing trust. We examined the recently published literature to understand the application of ethics principles in investigations involving refugees. Methods We conducted a preliminary review of refugee health literature (research and non-research data collections) published from 2015 through 2018 available in PubMed. Article inclusion criteria were: participants were refugees, topic was health-related, and methods used primary data collection. Information regarding type of investigation, methods, and reported ethics considerations was abstracted. Results We examined 288 articles. Results indicated 33% of investigations were conducted before resettlement, during the displacement period (68% of these were in refugee camps). Common topics included mental health (48%) and healthcare access (8%). The majority (87%) of investigations obtained consent. Incentives were provided less frequently (23%). Most authors discussed the ways in which community stakeholders were engaged (91%), yet few noted whether refugee representatives had an opportunity to review investigational protocols (8%). Cultural considerations were generally limited to gender and religious norms, and 13% mentioned providing some form of post-investigation support. Conclusions Our analysis is a preliminary assessment of the application of ethics principles reported within the recently published refugee health literature. From this analysis, we have proposed a list of best practices, which include stakeholder engagement, respect for cultural norms, and post-study support. Investigations conducted among refugees require additional diligence to ensure respect for and welfare of the participants. Development of a refugee-specific ethics framework with ethics and refugee health experts that addresses the need for stakeholder involvement, appropriate incentive use, protocol review, and considerations of cultural practices may help guide future investigations in this population.
  • Impact of conflict on maternal and child health service delivery: a country case study of Afghanistan

    Shafiq Mirzazada; Zahra Ali Padhani; Sultana Jabeen; Malika Fatima; Arjumand Rizvi; Uzair Ansari; Jai K. Das; Zulfiqar A. Bhutta (BMC, 2020-06-01)
    Abstract Introduction Since decades, the health system of Afghanistan has been in disarray due to ongoing conflict. We aimed to explore the direct effects of conflict on provision of reproductive, maternal, newborn, child and adolescent health and nutrition (RMNCAH&N) services and describe the contextual factors influencing these services. Method We conducted a quantitative analysis of secondary data on RMNCAH&N indicators and undertook a supportive qualitative study to help understand processes and contextual factors. For quantitative analysis, we stratified the various provinces of Afghanistan into minimal-, moderate- and severe conflict categories based on battle-related deaths from Uppsala Conflict Data Program (UCDP) and through accessibility of health services using a Delphi methodology. The coverage of RMNCAH&N indicators across the continuum of care were extracted from the Demographic and Health Surveys (DHS) and Multiple Indicator Cluster Survey (MICS). The qualitative data was captured by conducting key informant interviews of multi-sectoral stakeholders working in government, NGOs and UN agencies. Results Comparison of various provinces based on the severity of conflict through Delphi process showed that the mean coverage of various RMNCAH&N indicators including antenatal care (OR: 0.42, 95%CI: 0.32–0.55), facility delivery (OR: 0.42, 95%CI: 0.32–0.56), skilled birth attendance (OR: 0.43, 95%CI: 0.33–0.57), DPT3 (OR: 0.26, 95% CI: 0.20–0.33) and oral rehydration therapy (OR: 0.37, 95% CI: 0.25–0.55) was significantly lower for severe conflict provinces when compared to minimal conflict provinces. The qualitative analysis identified various factors affecting decision making and service delivery including insecurity, cultural norms, unavailability of workforce, poor monitoring, lack of funds and inconsistent supplies. Other factors include weak stewardship, capacity gap at the central level and poor coordination at national, regional and district level. Conclusion RMNCAH&N service delivery has been significantly hampered by conflict in Afghanistan over the last several years. This has been further compromised by poor infrastructure, weak stewardship and poor capacity and collaboration at all levels. With the potential of peace and conflict resolution in Afghanistan, we would underscore the importance of continued oversight and integrated implementation of sustainable, grass root RMNCAH&N services with a focus on reaching the most marginalized.
  • Responding to health needs of women, children and adolescents within Syria during conflict: intervention coverage, challenges and adaptations

    Chaza Akik; Aline Semaan; Linda Shaker-Berbari; Zeina Jamaluddine; Ghada E. Saad; Katherine Lopes; Joanne Constantin; Abdulkarim Ekzayez; Neha S. Singh; Karl Blanchet (BMC, 2020-05-01)
    Abstract Background Women and children suffer disproportionately in armed-conflicts. Since 2011, the protracted Syrian crisis has fragmented the pre-existing healthcare system. Despite the massive health needs of women and children, the delivery of key reproductive, maternal, newborn, child and adolescent health and nutrition (RMNCAH&N) interventions, and its underlying factors are not well-understood in Syria. Our objective was to document intervention coverage indicators and their implementation challenges inside Syria during conflict. Methods We conducted 1) a desk review to extract RMNCAH&N intervention coverage indicators inside Syria during the conflict; and 2) qualitative interviews with decision makers and health program implementers to explore reasons behind provision/non-provision of RMNCAH&N interventions, and the rationale informing decisions, priorities, collaborations and implementation. We attempt to validate findings by triangulating data from both sources. Results Key findings showed that humanitarian organisations operating in Syria adopted a complex multi-hub structure, and some resorted to remote management to improve accessibility to certain geographic areas. The emergency response prioritised trauma care and infectious disease control. Yet, with time, humanitarian organisations successfully advocated for prioritising maternal and child health and nutrition interventions given evident needs. The volatile security context had implications on populations’ healthcare seeking behaviors, such as women reportedly preferring home births, or requesting Caesarean-sections to reduce insecurity risks. Additional findings were glaring data gaps and geographic variations in the availability of data on RMNCAH&N indicators. Adaptations of the humanitarian response included task-shifting to overcome shortage in skilled healthcare workers following their exodus, outreach activities to enhance access to RMNCAH&N services, and operating in ‘underground’ facilities to avoid risk of attacks. Conclusion The case of Syria provides a unique perspective on creative ways of managing the humanitarian response and delivering RMNCAH&N interventions, mainly in the multi-hub structure and use of remote management, despite encountered challenges. The scarcity of RMNCAH&N data is a tremendous challenge for both researchers and implementing agencies, as it limits accountability and monitoring, thus hindering the evaluation of delivered interventions.
  • A qualitative study on aspects of consent for genomic research in communities with low literacy

    Daima Bukini; Columba Mbekenga; Siana Nkya; Lisa Purvis; Sheryl McCurdy; Michael Parker; Julie Makani (BMC, 2020-06-01)
    Abstract Background Low literacy of study participants in Sub - Saharan Africa has been associated with poor comprehension during the consenting process in research participation. The concerns in comprehension are far greater when consenting to participate in genomic studies due to the complexity of the science involved. While efforts are made to explore possibilities of applying genomic technologies in diseases prevalent in Sub Saharan Africa, we ought to develop methods to improve participants’ comprehension for genomic studies. The purpose of this study was to understand different approaches that can be used to seek consent from individuals with low literacy in Sub-Saharan African countries in genomic research to improve comprehension. Methods Using qualitative study design, we conducted focus-group discussions, in-depth interviews and participant observations as data collection methods. This study was embedded in a hospital based genomic study on Sickle Cell Disease at Muhimbili National Hospital in Tanzania. Thematic content analysis was used to analyse the transcripts and field notes. Results Findings from this study show that literacy level has little influence on understanding the research details. According to the participants of this study, the methods used to provide information, the language, and time spent with the study participants were the key factors influencing understanding. The availability of group sessions held before individual consent to allow for a detailed questions and answers format was agreed to be the best method to facilitate the comprehension. Conclusion The quality of the consenting process of participants will be influence by a number of factors. The type of research consented for, where the research will be implemented and who are the potential study participants are amongst the factors that need to be assessed during the consenting. Measures to improve participants’ comprehension need to be developed when consenting participants with low literacy level in genomic studies.
  • Egyptians' social acceptance and consenting options for posthumous organ donation; a cross sectional study

    Ammal M. Metwally; Ghada A. Abdel-Latif; Lobna Eletreby; Ahmed Aboulghate; Amira Mohsen; Hala A. Amer; Rehan M. Saleh; Dalia M. Elmosalami; Hend I. Salama; Safaa I. Abd El Hady (BMC, 2020-06-01)
    Abstract Background Organ donation has become one of the most effective ways to save lives and improve the quality of life for patients with end-stage organ failure. No previous studies have investigated the preferences for the different consenting options for organ donation in Egypt. This study aims to assess Egyptians’ preferences regarding consenting options for posthumous organ donation, and measure their awareness and acceptance of the Egyptian law articles regulating organ donation. Methods A cross sectional study was conducted among 2743 participants over two years. Each participant was required to rank eleven consenting options from 1 (most preferred) to 11 (least preferred), and to report his awareness and acceptance of the seven articles of the Egyptian law of organ donation. Results 47% of the participants expressed willingness to donate their organs after death. This percentage increased to 78% when consenting options were explained to participants. “Informed consent by donor only” was the most preferred type of consent for one third of respondents. Awareness of the law articles regulating organ donation was relatively low ranging from 56% to 23%. Conclusion Currently, around half of the Egyptian population agree to posthumous organ donation. This percentage could be increased significantly by raising the awareness about how the process of donation could be regulated and how the patient’s right of decision could be protected.

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