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      ‘When Ebola enters a home, a family, a community’: A qualitative study of population perspectives on Ebola control measures in rural and urban areas of Sierra Leone

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          Abstract

          Background

          During the West Africa Ebola outbreak, cultural practices have been described as hindering response efforts. The acceptance of control measures improved during the outbreak, but little is known about how and why this occurred. We conducted a qualitative study in two administrative districts of Sierra Leone to understand Ebola survivor, community, and health worker perspectives on Ebola control measures. We aimed to gain an understanding of community interactions with the Ebola response to inform future intervention strategies.

          Methodology/Principal findings

          Participants (25 survivors, 24 community members, and 16 health workers) were recruited purposively. A flexible participatory method gathered data through field notes and in-depth, topic-led interviews. These were analysed thematically with NVivo10© by open coding, constant comparison, and the principles of grounded theory. The primary theme, ‘when Ebola is real’, centred on denial, knowledge, and acceptance. Ebola was denied until it was experienced or observed first-hand and thus health promotion was more effective if undertaken by those directly exposed to Ebola rather than by mass media communication. Factors that enabled acceptance and engagement with control measures included: access to good, proximate care and prevention activities; seeing that people can survive infection; and the co-option of trusted or influential local leadership, with bylaws implemented by community leaders being strongly respected. All participants noted that dignity, respect, and compassion were key components of effective control measures.

          Conclusions

          Successful control approaches need strong community leadership, with the aim of achieving collective understanding between communities and health workers. Health promotion for communities at risk is best conducted through people who have had close interaction with or who have survived Ebola as opposed to reliance on broad mass communication strategies.

          Author summary

          The scale of the 2014–15 Ebola epidemic was unprecedented and led to over 11,000 deaths in Sierra Leone, Liberia and Guinea. What is distinct about the findings of this study is the knowledge gained from experiences and reflections of communities, health workers and Ebola survivors living in the midst of an outbreak of this magnitude. To this point cultural practices were seen to both spread the disease and hinder response efforts, yet little was known about how and why affected communities engaged with Ebola control measures. We talked with people to understand their perspectives with the aim of improving responses to future disease outbreaks. Our findings show people believed ‘Ebola is real’ and adapted to control measures when they were directly affected by the disease. Factors supporting acceptance of and adherence to controls were treatment quality; proximal care; first-hand observation that people can survive the disease; and the participation of local leaders and community knowledge in the response. Dignity, respect, and compassion were essential for control measures to be accepted and effective. Health messaging is best conducted at household level through local leaders or people who have experienced Ebola first-hand, rather than mass media which was the initial approach.

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          Most cited references10

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          Cultural Contexts of Ebola in Northern Uganda

          Technical guidelines for the control of Ebola hemorrhagic fever (EHF) indicate that understanding local views and responses to an outbreak is essential. However, few studies with such information exist. Thus, we used qualitative and quantitative methods to determine how local residents of Gulu, Uganda, viewed and responded to the 2000–2001 outbreak of EHF. Results indicated that Acholi people used at least three explanatory models to explain and respond to the outbreak; indigenous epidemic control measures were often implemented and consistent with those being promoted by healthcare workers; and some cultural practices amplified the outbreak (e.g., burial practices). However, most persons were willing to modify and work with national and international healthcare workers.
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            Ebola interventions: listen to communities.

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              Reaching out to Ebola victims: Coercion, persuasion or an appeal for self-sacrifice?

              The 2014-2015 Ebola crisis in West Africa has highlighted the practical limits of upholding human rights and common ethical principles when applying emergency public-health measures. The role of medical teams in the implementation of quarantine and isolation has been equivocal, particularly when such measures are opposed by communities who are coerced by the temporary suspension of civil liberties. In their encounters with Ebola victims, outreach teams face moral dilemmas, where the boundaries are unclear between coercion, persuasion and appeals for self-sacrifice. For those teams, we propose a set of practical recommendations aimed at respecting the autonomy of epidemic victims and easing tensions within communities. We recognize that some of these recommendations are progressively achievable, depending on the specific stage or setting of an outbreak. Yet with the increasing availability of experimental treatments and research interventions, weighing patients' autonomy against the common good will become an even more pressing ethical obligation.
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                Author and article information

                Contributors
                Role: Data curationRole: Formal analysisRole: InvestigationRole: Project administrationRole: Writing – review & editing
                Role: ConceptualizationRole: Formal analysisRole: InvestigationRole: MethodologyRole: SupervisionRole: ValidationRole: Writing – original draft
                Role: ConceptualizationRole: Writing – review & editing
                Role: ConceptualizationRole: Writing – review & editing
                Role: ConceptualizationRole: MethodologyRole: Writing – review & editing
                Role: ConceptualizationRole: Project administrationRole: Writing – review & editing
                Role: ConceptualizationRole: Writing – review & editing
                Role: ConceptualizationRole: Writing – review & editing
                Role: ConceptualizationRole: Writing – review & editing
                Role: Editor
                Journal
                PLoS Negl Trop Dis
                PLoS Negl Trop Dis
                plos
                plosntds
                PLoS Neglected Tropical Diseases
                Public Library of Science (San Francisco, CA USA )
                1935-2727
                1935-2735
                8 June 2018
                June 2018
                : 12
                : 6
                : e0006461
                Affiliations
                [1 ] Médecins Sans Frontières (MSF), Programmes Unit, London, United Kingdom
                [2 ] Médecins Sans Frontières (MSF), Humanitarian Affairs Department, Amsterdam, The Netherlands
                [3 ] Médecins Sans Frontières (MSF), Public Health Department, Amsterdam, The Netherlands
                [4 ] University of Cambridge, Queens’ College, Cambridge, United Kingdom
                [5 ] Ministry of Health and Sanitation, District Health Management Team, Tonkolili, Sierra Leone
                [6 ] Ministry of Health and Sanitation, National Public Health Agency, Freetown, Sierra Leone
                Institute for Disease Modeling, UNITED STATES
                Author notes

                The authors have declared that no competing interests exist.

                Author information
                http://orcid.org/0000-0002-8686-7558
                Article
                PNTD-D-17-01207
                10.1371/journal.pntd.0006461
                6010297
                29883449
                86228cd8-8723-4815-a650-1dea967add1e
                © 2018 Gray et al

                This is an open access article distributed under the terms of the Creative Commons Attribution License, which permits unrestricted use, distribution, and reproduction in any medium, provided the original author and source are credited.

                History
                : 31 July 2017
                : 19 April 2018
                Page count
                Figures: 0, Tables: 3, Pages: 14
                Funding
                The authors received no specific funding for this work.
                Categories
                Research Article
                Medicine and Health Sciences
                Tropical Diseases
                Neglected Tropical Diseases
                Viral Hemorrhagic Fevers
                Ebola Hemorrhagic Fever
                Medicine and Health Sciences
                Infectious Diseases
                Viral Diseases
                Viral Hemorrhagic Fevers
                Ebola Hemorrhagic Fever
                Medicine and Health Sciences
                Infectious Diseases
                Infectious Disease Control
                Medicine and Health Sciences
                Public and Occupational Health
                Health Promotion
                Medicine and Health Sciences
                Epidemiology
                Quarantines
                Social Sciences
                Sociology
                Communications
                Social Communication
                Biology and Life Sciences
                Anatomy
                Body Fluids
                Blood
                Medicine and Health Sciences
                Anatomy
                Body Fluids
                Blood
                Biology and Life Sciences
                Physiology
                Body Fluids
                Blood
                Medicine and Health Sciences
                Physiology
                Body Fluids
                Blood
                People and places
                Geographical locations
                Africa
                Sierra Leone
                Social Sciences
                Sociology
                Human Families
                Custom metadata
                vor-update-to-uncorrected-proof
                2018-06-20
                Data are available from MSF OCA, in collaboration with the MSF Ethics Committee for researchers who meet the criteria for access to confidential data. Requests can be made to MSF OCA Medical Director Dr. Sidney Wong ( sidney.wong@ 123456amsterdam.msf.org ). Data is restricted as it may reveal the identity or location of participants through deductive disclosure. As a result making it public is not ethical as it could pose privacy and confidentiality concerns.

                Infectious disease & Microbiology
                Infectious disease & Microbiology

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