Outbreak Ethnography: Lessons Learned

Outbreak Ethnography: Lessons Learned Culture, Politics, and Ecology Bonnie Hewlett Washington State University By and large, the people, the rural, simple people who ve usually been those most involved with these epidemics, I think they deal with it as individuals and as communities far better than on average we will and do. Karl Johnson One thing I have realized is that the people in the community, some of them have the answers. www.nytimes.com/2014/09/14/.../ebola-liberia.html where transmission has slowed, it is mainly in areas where afflicted populations have put into place their own protective measures. http://somatosphere.net/2014/09/notes-from-case-zero-anthropology-in-the-time-of-ebola.html 1

Representations of Africans During Previous Ebola Outbreaks 2001 Several hundred Acholi traditionalists took matters into their own hands in Gulu town. They tried to chase out the virus by shouting, running around with spears and beating on saucepans New York Times Magazine (Hardin 2001) Apr 8, 2003 Fighting superstition in Congo's Ebola zone. A local sorcerer accused four teachers of killing people to acquire supernatural powers. www.ifrc.org/.../ne...international Federation of Red Cross and Red Representations of Africans 2014 West Africa (Liberia, Sierra Leone, Guinea) Jul 31, 2014 - Ebola Treatment in Africa Impeded by Witchcraft and Sorcery Belief www,chinatx.com/ebola-treatment-africa-witchcraft Aug 2, 2014 - A widespread belief in witchcraft is hampering efforts to halt the Ebola virus from spreading, a British doctor has claimed. www.telegraph.co.uk 2

WORLD HEALTH ORGANIZATION CONCERNS: UGANDA 2000, REP. OF CONGO 2003 Uganda 1. Why were people running away from the ambulance? 2. Were people afraid of being buried at the mass burial ground? 3. Do burials amplify outbreaks? ROC 1. Understand local cultural models linked to Ebola to prepare incoming international team and begin social mobilization and health education. 2. Focus on cultural sensitivity of clinical and intervention strategies, establish a isolation units and oversee burial procedures 3

Approaches and Methods CULTURAL MODELS CULTURAL MODELS REFER TO PEOPLE S KNOWLEDGE AND FEELINGS ABOUT A PARTICULAR DOMAIN. CLINICAL MEDICAL ANTHROPOLOGY THIS APPROACH EMPHASIZES PROVIDING CULTURALLY SENSITIVE AND APPROPRIATE CARE IN A HOSPITAL OR CLINIC SETTING. IN PARTICULAR WITH REGARDS TO TECHNOLOGY AND BEHAVIOR. DUNN S FRAMEWORK THIS APPROACH INTEGRATES CULTURAL MODELS AND STRUCTURAL VIOLENCE APPROACHES. BOTH LOCAL PEOPLE AND INTERNATIONAL TEAMS HAVE CULTURES AND BEHAVIORS THAT INFLUENCE HEALTH OUTCOMES. IT IMPLIES THAT COMMUNITY MEMBERS MAY HAVE BELIEFS AND PRACTICES IN PLACE THAT ARE ENHANCING HEALTH. 4

F. Dunn (M.D., Ph.D.) Framework for Evaluating Social and Behavioral Aspects of Infectious Disease Control UGANDA 1) 10 individuals and four focus groups in villages or neighborhoods with large numbers of early cases of EHF; 2) 8 individuals and one focus group with survivors of EHF (both healthcare workers and community members); 3) 4 focus groups with male and female elders (two meetings with each gender); 4) 3 individuals and two focus groups with children; 5) 4 individuals and two focus groups with health-care workers responsible for the isolation unit and counseling survivors; 6) 4 individuals and one focus group with indigenous healers. Focus group meetings usually had 5-8 participants. 7) Group interviews with 50 survivors and 15 health educators. 5

REPUBLIC OF CONGO 1) 5 focus groups of women and 3 individuals; 2) 4 focus groups of children and 2 individuals; 3) 3 focus groups of Red Cross volunteers and 3 individuals; 4) one focus group of nurses and two individuals; 5) one group of teachers; 6) 3 village chiefs and council of elders in three neighborhoods within Mbomo; 7) 2 traditional healers 8) general village meetings in four rural villages; 9) separate meetings with Kola, Mboko and Mongome ethnic groups in two villages 10) the physician at the national park, Ministry of Health medical chief, Director of Lossi Reserve. Open-ended, semi-structured with individuals and focus group interviews as well as secondary sources (e.g., health education materials, reports) Results Uganda 1. Why were people running away from the ambulance? 2. Were people afraid of being buried at the mass burial ground? 3. Do burials amplify outbreaks? WE DO NOT HAVE ANY OBJECTION TO AIRFIELD BURIALS, WE APPRECIATE THIS BECAUSE IT PROVIDES PROTECTION TO ALL OF US. 6

Do burials amplify outbreaks? VARIOUS ACTIVITIES ASSOCIATED WITH BURIAL PRACTICES CONTRIBUTED TO TRANSMISSION OF EVD. 1) CAREGIVING AND WASHING THE BODY WAS A POSSIBLE MEANS OF INFECTION MAINLY FOR WOMEN (67% OF ALL PRESUMPTIVE EVD CASES IN UGANDA WERE WOMEN) 2) A LOVE TOUCH DURING A BURIAL CEREMONY WAS A MORE COMMON MEANS OF INFECTION AMONG MEN. THE FACT THAT 63% OF THE SURVIVORS IN THIS STUDY HAD THEIR FIRST SYMPTOMS EARLY IN THE OUTBREAK IMPLIES THAT THEY PROBABLY BECAME INFECTED BEFORE LABORATORY TESTS CONFIRMED EVD AND BEFORE IT WAS DESIGNATED AS GEMO IN MANY COMMUNITIES. Ebola Haemorrhagic Fever, Gulu, Uganda 2000 Kinship chart Adult females Few children (EHF suicide) (3 other children) (6 other children) (6 other children) (5 children) (5 children) Legend Male alive Female alive Marriage Male alive EHF+ Male dead EHF+ Female alive EHF+ Female dead EHF+ Divorce 26 Children under the care of one family Male non EHF death 7

CULTURAL MODEL FOR ILLNESS: EVD as Epidemic ACHOLI PROTOCOL TO CONTROL GEMO Isolate the patient in a house at least 100m from all other houses; mark house with poles, no visitors allowed. Children kept away from all sick people Identify infected village with poles, monitor village, reduce movement between villages (protective sequestration) A survivor of gemo should feed and care for the patient. Houses and villages with ill patients should be identified with long poles. Increase harmony; all conflicts within the household and village should stop; everyone should maintain a good heart Stop all dances, football games, large social gatherings. Stop sexual activity. Individuals who recover from all symptoms should remain in isolation for one lunar cycle. Individuals who die of gemo should be buried at edge of village. 8

Republic of Congo 1. Focus on cultural sensitivity of clinical and intervention strategies, establish isolation units and oversee burial procedures 2. Prepare coming international team and begin social mobilization and health education. Recommendations: 1. Transparent barriers around isolation units 2. Allow family members see the body before placement in body bag 3. Attend funerals whenever possible and share in the grieving process 4. Allow fetishes and other protective objects in isolation 5. Allow family in protective gear to visit patient 6. Always ask the family what to do with personal effects of deceased patient (e.g., bury in coffin, burn, sanitize) 7. The results of blood or other samples need to be reported back to the community 8. Make all activities transparent to local community 9. Anthropologists needed to participate from the start, and be involved in all components of an outbreak response. 10. Local anthropologists from the impacted countries should participate and be trained in control efforts. 9

CONCERNS AND ISSUES ENCOUNTERED WEST AFRICA DENIAL: Denial that Ebola exists, is present in community, families, individuals. http://www.npr.org/blogs/goatsandsoda/2014/08/06/338234063/skeptics-in-sierra-leone-doubt-ebola-virus-exists RESISTANCE, FEAR, DISTRUST: Resistance to international teams and isolation wards. People are afraid of going to the treatment centers. People afraid of having the deceased buried by the burial team and are resisting team burial.http://www.bbc.com/news/29331061 http://www.theguardian.com/tv-and-radio/2014/sep/27/unreported-world-surviving-ebola-review-c4-sierra-leone-hospital BURIAL PRACTICES: Traditional burial practices and how local people care for those sick with EVD are said to be amplifying EVD. http://www.bbc.com/news/29331061 QUARANTINE: People resistant to quarantine. http://www.theguardian.com/society/2014/sep/18/ebola-health-workers-missing-guinea STIGMATIZATION: Those working with Ebola victims and survivors are often stigmatized and avoided. http://www.theguardian.com/world/2014/oct/22/ebola-liberia-not-virus-stigma BELIEF IN SORCERY: Initially, local cultural models linked to explanations of EVD as sorcery. www,chinatx.com/ebola-treatment-africa-witchcraft BELIEF IN SORCERY Oct 10, 2014 "There's a strong belief in witchcraft that Ebola is contracted through a curse, https://+ebola&ie=utf-8&oe=utf-8&aq=t&rls=org.mozilla:en- US:official&client Our data: Shifts in cultural models to explain EVD are common and criteria may exist for distinguishing sorcery from epidemic illnesses 10

STIGMATIZATION: Survivors, relatives of Ebola victims, orphans and those working with Ebola patients are often stigmatized, shunned, feared and avoided. Some people commented in a lynch mob mentality, like, Oh, we should torch his house and things like that, (http://www.huffingtonpost.com/2014/10/30/selfquarantine-ebola_n_6071004.html) Our data: 1) stigmatization of survivors was a common experience for many survivors-- men, women and nurses; 2) women experienced stigmatization more intensely than men; and, 3) female nurses experienced the most frequent stigmatization in the community 4) children appeared to fear contact with survivors more than adults 50 adults in the Gulu community reported they feel comfortable touching a person that survived Ebola, (49%) one month after hospital release. Waiting one moon is consistent with gemo epidemic control protocol. http://www.theguardian.com/world/2014/oct/22/ebola-liberia-not-virus-stigma CONCERNS AND ISSUES ENCOUNTERED: Stigmatization Nigeria Knowledge A lot of persons were staying away from me my friends, my neighbors they were running away from me, he says. The change came after he decided to speak out to neighbours, to the media and to anyone who would listen. He explained that he no longer had the Ebola virus in his body and could not transmit the disease. The best tool to fight stigmatization, he says, is knowledge. http://www.unicef.org/infobycountry/ nigeria_76103.html Liberia Compassion For his part, Ghartey has set an example, even by just holding orphaned children's hands, a rare gesture in these fearful times. Ghartey invited them into his home. "They sit in my living room with my family," he said. "They are like a family to us now. http://www.cnn.com/2014/10/20/world/africa/ebola-liberia-orphans/ http://socialistworker.co.uk/art/39311/delayed+aid+and+postponed+research+-+the+west+and+ebola 11

COMMON HUMAN RESPONSES TO HIGH MORTALITY EPIDEMICS INITIAL CASES Use familiar cultural models DEATHS CONTINUE Fear and anxiety Collect information about outbreak Flee Conflicts Implement epidemic cultural models (indigenous or biomedical) General lack of trust in government and public health Grief and depression Cooperation Stigmatization and Blame Hope Cross-Cultural Study of Human Responses (MacGrath 1991) 229 cultures in HRAF Response Percentage of cultures with data Flight or migration from epicenter of epidemic Implementation of extraordinary therapies and preventative measures Blaming or scapegoating individuals, authorities or institutions Resignation and despair 9 46 24 11 Ostracism of ill or those at risk of becoming ill 9 12

Human Responses to Epidemics (yellow fever, cholera, typhus) in U.S. in 1700-1800s (Fox 1989) Politicians and public health officials often underestimated the severity of the epidemics at the start Fear developed as they progressed and people responded by fleeing, denying, or blaming outsiders, stigmatizing the infected; but business and government leaders collaborated to establish control measures Common control measures included quarantine (separating people who may have the disease) and isolation of infected 1918 Spanish Flu Outbreak in Baltimore (3100 people died; 0.5% of pop in June 1918) Lack of respect for mores relating to burial practices Lack of trust in government and public officials; lack of precise and reliable information Lack of resources to treat sick patients Assigning blame to others was common (Schock-Spana 2002) 13

Multi Theoretical-Disciplinary Framework Natural Ecology The virus/agent Ecosystem Human Biology and Nature Fear Grief Trust Inclusive fitness Ecology Culturally Const Niche Culture Internal + External Gender Hierarchy Political Economy Socially acquired knowledge and information Impact of history RESPONSES TO HIGH MORTALITY EPIDEMICS LESSON 1: RESILIENT COMMUNITIES DATA: Gemo and other indigenous protocols are communitybased efforts to control epidemic diseases. The protocol emphasizes community harmony, respect and decision-making. LESSON: Communities should be the basis of control efforts. Build upon community infrastructures. Public health agencies need to develop partnerships with grassroots organization, faithbased organizations and businesses. Public health communication needs to be more two-way rather than one-way (current emphasis is on risk communication). Increase public health funding. 14

Community Engagement: Engage community as soon as possible as a partner in control efforts. Involving community in discussions-- what they say their needs are/ what they feel will work/ how they feel they are able to mobilize and help in control efforts. Hold local expert led community meetings on a weekly basis. Recognize that distrust goes two ways, national and international teams need to trust in local peoples abilities, knowledge and desire to aid in control efforts HEALTH-ENHANCING ACTIVITIES BY LOCAL COMMUNITIES (West Africa) Establishing zones within neighborhoods and using trusted local experts and surveillance teams Identifying victims, providing safe removal of bodies and following contact cases Ensuring neighbors receive food, medicines, healthcare for endemic diseases Education efforts Ensuring people receive and are properly trained to use home-health care kits Use of volunteers, teachers, nurses to go door to door to educate Some community members taking in orphans (http://www.nytimes.com/2014/09/14/world/africa/ebola-liberia.html?_r=0) 15

LESSON 2: TRUST DATA: Lack of trust of health and government authorities led people to deny the outbreak and refuse to seek treatment. History (colonialism) and politics led to people running away from or refusing to go to health authorities during outbreaks. Lack of trust in government is a common human response. LESSON: Trust and respect are essential. Transparency, sensitivity and consistency contribute to the develop of trust of government and health authorities. Building Trust Resolute responsiveness: Sensitively, appropriately and quickly responding to the needs of the people. Open and honest transparency of action (attending local mtgs, having regular interactions) Sensitive and respectful responses to their needs necessary to have basic understanding of how they think and feel to provide sensitive, respectful care. Attending funerals, providing grief and loss support to teams and community Consistent--do what say you are going to do; consistent messages, health education and control strategies 16

Building Trust Supportive Aid International and national governments and teams provide training, aid, education (preferably by trusted local HCW) and steady supply of equipment. Basic health care: Provision of food, medicine for endemic diseases and physical, psychological care for survivors, children LESSON 3: HUMAN NATURE--FEAR DATA: Fear is evoked by observing or knowing about several people living nearby who die rapidly from a relatively unknown illness. Fear generates a desire for information. Fear can be mitigated several ways: a) previous experience b) fleeing areas of infection, which many wealthy people do (yellow fever, plague), and c) trusted information about the disease. LESSON: Trusted information/knowledge can mitigate fear and decrease fear and stigmatization. 17

11/5/14 LESSON 4: INEQUALITY DATA: Women, children and political-economically marginal groups often do not have equal access to information, medications and services. LESSON: Public health departments and international teams need to mobilize efforts to ensure all groups are informed and participate in community decisions. LESSON 6: OUTSTANDING INDIVIDUALS DATA: Ebola research and history of other epidemics are full of incredible stories of individuals helping others and their families. LESSON: Hope. Outstanding individuals may save as many lives as technology (e.g., isolation units, medications). 18

Culture (models, history, politics) matters. People living with killer epidemics have accumulated knowledge over time. Local people have indigenous knowledge and practices to help control epidemics. Distrust of the international team (primarily Euro-Americans) is likely due to colonial history, neocolonial relations, and experiences in previous outbreaks. History and politics of the region dramatically impact Ebola control efforts. A holistic bio-cultural approach is necessary to control emerging infectious diseases. 19