Community-Centered Responses to Ebola in Urban Liberia: The View from Below
Sharon Alane Abramovitz, Kristen E. McLean, Sarah Pindley McKune, Kevin Louis Bardosh, Mosoka Fallah, Josephine Monger, Kodio Tehoungue & Patricia Omidian, April 2015
Link to the original document [Fr] [En]
FRANÇAIS
Alors que les systèmes sanitaires ont montré leurs limites, les populations locales libériennes ont développé des solutions innovantes pour lutter contre la crise Ebola, notamment par l’organisation de quarantaines informelles et la création d’équipement de protection individuelle (EPI) grâce au matériel disponible. Cette étude examine plusieurs de ces processus et suggère que des mécanismes de surveillance et de signalisation qui incluent les populations locales soient mis en place pour éviter de nouvelles épidémies.
L’une des leçons principales à tirer de l’épidémie Ebola en Afrique de l’Ouest est que l’engagement des populations locales est crucial, et a probablement joué un rôle dans la diminution des taux de transmissions. Dans un contexte où les systèmes de surveillance médicale ont failli, les cliniques et hôpitaux à travers le Libéria ont fermé, et la construction de centres de traitement Ebola (CTE) n’a pas répondu à la demande, les populations locales ont été obligées de trouver leurs propres solutions.
Nos résultats démontrent que les populations locales ont fait preuve de résistance, d’innovation et de réponse rapide à la crise Ebola. Elles ont également montré que dans des conditions de stress extrême, la culture peut être flexible et souple en s’adaptant aux circonstances et à l’arrivée de nouvelles informations (telles que des messages de santé publique), tout en faisant des concessions dans des conditions extraordinaires […]. Le savoir local peut rapidement évoluer en réponse aux informations de santé publique et aux réalités de l’épidémie. Les pratiques funéraires et les prestations de soins peuvent être suspendues ou modifiées. Les familles rompent avec les modèles conventionnels afin de protéger les individus non-infectés.
Les chefs des communautés locales s’accordaient à dire que la prévention constituait la meilleure stratégie pour restreindre l’épidémie Ebola. Durant la flambée du virus à Monrovia, la prévention était perçue sous six formes cruciales : (1) une forte augmentation dans la quantité et spécificité des activités de formation au niveau des communautés afin d’empêcher l’infection par Ebola, (2) une meilleure hygiène et système sanitaire, ainsi que la distribution de matériel de nettoyage et de protection, (3) la création d’un système de surveillance, (4) le transport en sécurité de personnes infectées de la communauté vers les hôpitaux et centres de traitement Ebola (CTE), (5) l’évacuation des personnes décédées, et (6) la construction d’infrastructures au niveau de la communauté pour soigner les malades.
Plus important encore, les chefs de communauté ont insisté sur le fait que des investissements importants dans les infrastructures locales et dans les systèmes étaient nécessaires pour limiter la propagation de l’épidémie, rappelant au passage le fameux appel de Paul Farmer pour du « personnel, de l’équipement et des systèmes ». Ils ont également demandé le soutien du gouvernement et des organisations dans la création de « centres de surveillance » au niveau de la communauté qui serviraient d’intérim pour les personnes malades et décédées en attendant l’arrivée des équipes d’intervention et/ou du personnel chargé des enterrements.
Une autre demande concernait la mise en place d’une assistance téléphonique qui permettrait de prioriser l’intervention rapide en fonction des appels des populations locales à placer les malades dans des hôpitaux et CTE et à évacuer les corps. Les chefs de communauté ont aussi émis le souhait de voir se développer une meilleure infrastructure de communication locale, qui inclurait un centre d’appels doté de plus de personnel, de plus d’ambulances, la construction de cliniques mobiles et la réouverture de cliniques communautaires qui avaient fermé leur portes, plus de centres de dépistage et enfin, la formation d’un plus grand nombre d’agents de santé et d’équipes d’enterrement. Enfin, ils insistèrent sur le fait que ces agents de santé soient bien payés et reçoivent des allocations convenables.
Lorsque les chefs de communauté participèrent aux discussions de « meilleures pratiques » lors de la phase d’intervention et de traitement, ils s’accordèrent à dire que la « meilleure intervention » était de recevoir des soins à l’hôpital ou dans un CTE, de chercher à évacuer les corps par des équipes spécialisées du gouvernement, et de faire recours aux pratiques d’enterrement qui réduisent au maximum les risques de transmission de la maladie. Mais, puisque les ressources n’étaient pas disponibles, les chefs de communauté se virent forcés à intervenir de façon innovante en cherchant comment la communauté pouvait gérer la présence d’Ebola et s’occuper des cadavres infectés du mieux possible.
Les quarantaines organisées au niveau de la communauté furent donc identifiées comme la meilleure stratégie disponible. Le processus de quarantaine demanda une surveillance et un approvisionnement attentifs des ressources, et les chefs de communauté s’interrogèrent sur la façon de soutenir au mieux les personnes et les familles en isolation et en quarantaine. Lors des discussions avec les chefs de communauté, il fut clair qu’ils essayèrent de placer la communauté au centre de l’intervention et du traitement contre Ebola en gérant la santé et la sécurité des familles mises en quarantaine à travers l’approvisionnement de nourriture, la surveillance des maladies, l’approvisionnement de médicaments ainsi que la communication et l’information. Il y avait une forte volonté venant de la communauté de servir d’axe central d’interaction entre l’Etat et la population en faisant le travail d’organiser la nourriture, les médicaments, l’hygiène, et la distribution d’équipement de protection individuelle (EPI), l’indentification et la surveillance des cas, la communication à tous les niveaux et le transport des corps.
Cette étude a exposé un aperçu direct du processus de planification des femmes alors qu’elles s’interrogeaient sur la meilleure façon de réagir si Ebola arrivait dans leur foyer, famille ou réseaux sociaux. Un large éventail de répondants – la plupart des femmes – ont rapporté qu’elles s’occuperaient de leurs proches malades, et qu’elles préfèreraient le faire au sein de leurs propres maisons. Elles décrivirent un plan pour s’isoler avec un membre de la famille souffrant et pour leur apporter le meilleur soin disponible, en utilisant les ressources à disposition. Comme le nota l’une des femmes interrogées, « il est impossible que mon enfant ou que mon mari soit malade et que je refuse de le toucher. Je n’ai ni le courage ni le cœur de faire cela. »
Faisant référence à une vidéo largement diffusée d’une infirmière qui avait créé son propre équipement de protection individuelle grâce à des sacs poubelles, des manteaux imperméables, des bottes et des gants, une femme âgée décrivit son intention de fabriquer elle-même de l’EPI en utilisant le matériel disponible. « Je trouverai mon propre EPI (grâce à un manteau imperméable et des sacs en plastique que j’ai en réserve) afin de soigner mes proches malades comme je l’ai vu à la télévision. Si la personne ne va pas mieux, alors je la prendrai (avec le sac en plastique dans mes mains) et l’amènerai à l’hôpital. » Les femmes ont démontré une vive conviction qu’elles étaient capables de soigner leurs familles, malgré les risques que cela leur faisait encourir pour leur propre santé.
Dans le futur, impliquer les populations locales dans la lutte contre l’épidémie demandera qu’on puisse répondre à leurs questions sur les défaillances du système en temps réel. Les communautés ont cherché de l’aide pour trier les malades lorsqu’ils étaient refoulés de l’hôpital, pour construire et soutenir les centres de détention, et pour signaler les décès lorsque l’assistance téléphonique ne répondait pas. La communauté sanitaire mondiale doit réfléchir aux mécanismes qui permettraient de mettre en place des systèmes de surveillance dans lesquels les chefs de communautés auraient le pouvoir de rapporter la santé, les maladies et la mort de chaque individu. Ceci pourrait être fait à travers la mise en place de numéros d’identification de santé, la création de listes de recensement, ou d’autres mécanismes de signalisation. Dans un contexte où chaque mort est du à Ebola parce qu’il n’existe aucun centre de dépistage Ebola au niveau de la communauté, chaque mort mérite d’être comptée. (Et lorsque que tout le monde dispose d’un numéro, tout le monde compte).
ENGLISH
As health systems showed their limits, local communities in Liberia have developed innovative solutions to respond to the Ebola crisis, such as the organisation of informal quarantines and the creation of personal protective equipment (PPE) from available materials. This study looks at some of these processes and suggests that surveillance and reporting mechanisms that include local communities should be used to avoid future epidemics.
A key lesson from the West African Ebola epidemic is that local community engagement is crucial for response, and may have played a role in the decline in transmission rates. In a context in which health surveillance systems had failed, healthcare workers were experiencing disproportionately high mortality rates due to Ebola infection, clinics and hospitals across Liberia were shut down, and the construction of hospitals and Ebola Treatments Units (ETU’s) could not keep pace with demand, communities were compelled to generate solutions of their own.
Our findings demonstrate how communities showed resilience, innovation, and rapid response to the Ebola crisis. They also show how under conditions of extreme stress, culture can be flexible and supple in response to extreme circumstances and the arrival of new information (like public health messages), and make allowances in extraordinary conditions […]. Local knowledge can shift rapidly in response to public health information and local epidemiological realities. Funerary and caregiving practices can be suspended or altered. Families will break with convention to protect uninfected individuals.
Community leaders agreed that prevention was the best strategy to curtail the Ebola outbreak. During the Ebola outbreak in Monrovia, prevention was seen as including six key areas: (1) a sharp increase in the quantity and specificity of community-based training to prevent Ebola infection, (2) improved hygiene, sanitation, and the distribution of cleaning and protective materials, (3) creating a system of surveillance, (4) safely transporting infected individuals from the community into hospitals and Ebola Treatment Units (ETUs), (5) removal of the dead, and (6) establishing a community-based infrastructure to care for people who were sick with Ebola.
Most importantly, community leaders argued that substantial investments in local infrastructure and systems were required to prevent the spread of the epidemic, recalling Paul Farmer’s much circulated call for “staff, stuff, and systems”. They requested government and other organizational support to create community “holding centers” to serve as interim sites for the sick and dead while waiting for Ebola response teams and/or burial teams to arrive.
They demanded a hotline system that prioritized rapid response to local communities’ calls to place sick people in hospitals and ETUs and remove bodies. Community leaders also recommended a broader local communications infrastructure, including a better-staffed call center, more ambulances, the establishment of mobile clinics or the reopening of local community clinics that had closed their doors, more testing centres, and finally, the training of additional health workers and burial teams. These health workers, they insisted, need to be paid and given adequate benefits.
When community leaders engaged in discussions of “best practices” regarding response and treatment, community leaders agreed that the true “best response” was to obtain care in a hospital or ETU, to seek the removal of sick individuals by healthcare teams working for the government, and to engage in proper burials that reduced disease transmission. But, if resources were not in place, community leaders engaged in creative planning and response by innovating alternatives to how a community might best manage the presence of Ebola infection and dispose of infectious corpses.
Instead, community-based quarantine was identified as the best available strategy or approach. The process of quarantine required careful oversight and supply of resources, and community-leaders gave careful thought to how they might best support individuals and families in isolation and quarantine. In community leaders’ discussions, it was apparent that they sought to position the community at the center of the Ebola treatment response by managing the health and safety of quarantined families through food supply, illness surveillance and oversight, reporting, the provision of medical supplies, and communication and information. There was a strong willingness on the part of the community to serve as a central axis for interaction between the state and local individuals and families by doing the work of organizing food, medical, hygiene, and PPE [protective personal equipment] distribution, case identification and surveillance, multi-level communication and reporting, and patient and corpse conveyance.
This research offered direct insight into the fore-planning process of women as they consider how to respond if and when Ebola arrives in their households, families, and social networks. A broad subset of respondents—mainly women—reported that they would care for their sick family members on their own, and that they preferred to do so inside the home. They described a plan for isolating themselves with a sick family member[s] and for providing the best locally available appropriate care they could offer, using available resources. As one woman noted, “It will be impossible that my child or husband is sick and I refuse to touch them. I do not have the courage or heart to do that.”
Referencing a widely circulated video of a nurse who had made her own personal protective equipment (PPE) from garbage bags, rain coats and boots, and gloves, an elderly woman reported her intention of making her own PPE from locally available materials. “I will find my own PPE (using a raincoat, plastic bags on hands) and care for sick relatives like I saw on television. If the person is not getting better, I will hold them (with the plastic still on my hands) and take them to the hospital.” Women showed an intense conviction that they should care for their families, and showed a desire to do so, despite risks to their own health.
In the future, engaging local communities in epidemic response will require answering their challenging questions about their encounters with systemic failures in real time. Communities sought guidance for triaging a sick person when he or she had been turned away from hospitals, for building and supporting holding units in communities, and for reporting deaths when their calls to hotlines went unanswered. The global health community needs to consider what it would mean to put into place surveillance and reporting mechanisms in which community-based leaders have the ability to directly account for health, illness, or death of every individual in the population. This could be done through the creation of health identification numbers, the creation of health census lists, or other mechanisms of reporting and marking. In a context in which every death is an Ebola death because there are no community-based testing facilities for Ebola, every death needs to be counted as worthy of being reported. (And when everyone has a number, everyone counts.)
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