The Cultural Contexts of Ebola in Northern Uganda

A Preliminary Report

15 March 2001

Barry S. Hewlett

Washington State University

Vancouver, WA 98686 USA

hewlett@vancouver.wsu.edu

INTRODUCTION

This report describes preliminary findings of a social-behavioral-cultural study of EHF in Gulu,, Uganda. To my knowledge it is the first behavioral study of EHF and the first time a behavioral scientist has participated in a WHO-directed international response team to EHF. The recent special issue on Ebola in The Journal of Infectious Diseases does not have one article on the behavioral aspects of the disease, but WHO technical guidelines for responding to EHF state:

Given the lack of previous research and an interest by WHO in these issues, the research aimed to: 1) describe local explanatory models of EHF; 2) better understand behavioral topics of concern to WHO (i.e., burial practices, fear of patients to seek treatment at the hospital, the role of traditional healers in disease transmission); and, 3) identify local and international beliefs and practices that enhanced or were detrimental to the control of EBF.

Before describing some of the results it is important to point out several limitations to the study and report: 1) the researcher conducted the study within a relatively short period of time (16 days); 2) the researcher was not allowed to live in a village as a participant observer because of political insecurity; 3) the study was conducted at the tail-end of the outbreak; and, 4) several data sets (mobile team reports and youth and adult questionnaires) have not been analyzed.

METHODS

A diversity of methods was utilized. The first two weeks of the research emphasized open-ended and focus group interviews as well as reviewing documents (e.g., health education materials, reports) whereas the last few days emphasized the development of systematic questionnaires. Usually, good questionnaires are based upon extensive ethnographic work. Open-ended interviews were conducted with: 1) families from villages with large numbers of early cases of EHF (e.g., in Rwot Obillo, Kapedo Opong); 2) survivors of Ebola (health care workers and community members); 3) male and female elders in the community; 4) community youth; 5) health care workers responsible for the isolation unit and counseling survivors; and, 6) traditional healers.

More systematic questionnaires were administered to 60 Gulu High School students,50 adults in the district and 60 EHF survivors. The study of adults was administered by Amola Richard, while the survivor questionnaire was administered by Kitza Francis as part of his "presentation" for medical officers school.

Existing documents, such as field reports and health education materials utilized in the outbreak (posters, brochures, music cassettes, videos, etc.), were also examined.

The Gulu EHF outbreak is relatively unusual by comparison to the other recent EHF outbreaks (e.g., DRC, Gabon) in that the disease impacted primarily one ethnic group, the Acholi, and the majority of the district medical staff and decision-makers (DMO, director of health education, etc.) were also from this ethnic group. The primary language of the Acholi is Luo, a Western Nilotic language spoken by groups scattered across East Africa from the southern Sudan to Tanzania. There are 746,796 Acholi in Uganda (1991 census), about 4.4 percent of the population. Gulu District has about 470,000 people, primarily Acholi, and 60 percent of the population live in protected villages. Sixty percent of the EHF cases occurred in Gulu Municipality.

The Acholi have a version of the "Iroquois" kinship terminology, which reflects Acholi patrilineal and patrilocal ideology. All lineage males in a speaker's generation (brothers and father's brother's sons), for example, are called "brother" (omera) and all lineage females in a speaker's generation (sisters, father's brother's daughters) are called "sister" (lamera).

RESULTS

Before explaining models for EHF it is important to understand the concept of jok, which is common to many Nilotic-speaking peoples, including the Acholi. Jok are "spirits" or "gods". There are many different types of jok, they have names and can often be found near bodies of water, mountains and natural salt licks for cattle. The jok are generally benevolent as they provide and control resources, but they can also cause harm if they are not respected. Deference and respect of others are central values in Acholi life, and spiritual life reflects and reinforces these values. Jok are like elders in the community; you listen to what they have to say, you do what they say without question, and you give them gifts to show your respect. When somebody dies, they have a spirit, called tibo, which is similar to jok in that it has supernatural abilities that can help or harm, and needs to be respected. But tibo usually remain around the family and household whereas jok are found in nature and move about.

Traditional healers (ajwaka), who are primarily women, obtain their powers to heal from specific jok within them. Most healers acquire jok during their lifetime, but it is possible to inherit (mother-daughter) jok. Some healers have one or two jok while others have more than 10. Each jok has a name and has specific kinds of knowledge (e.g., caring for mental confusion (apoya/wich), infertility (luo) or epilepsy (cimuo)).

At first, people treated the symptoms of EHF as a regular illness and sought a variety of both modern (i.e., cloroquine for fever/malaria or antibiotics for bloody diarrhea) and indigenous cures (herbs, traditional healers). In late September, after several individuals from the same family died, the head of the family often brought in a traditional healer to locate "medicines" or poisons (yat) located in and around the lineage household (doggang) that might be causing the illness and death. This is the first explanatory model in Table 1. The jok works through the healer's special metal spear (tong jok) to identify all the yat in the household area. In Rwot Obillo the healer found several long white roots while in Kabedo Opong the healer found several small white worms. The healer's jok also communicates with the jok causing the problems to see what it wants in terms of respect; generally this means the sacrifice of goats, sheep or other animals. The yat is burned, taken away by the healer or even placed in a bucket of Jik(bleach) to get rid of it. Animals are sacrificed according to the specific instructions of the jok causing the problem. Hypothetically, once the yat is removed and respect is demonstrated, the deaths should stop. This did not happen with EHF as family members in both of these villages continued to die.

Table 1. Explanatory Models for EHF among the Acholi

This process can take several hours or days and is not cheap; each family in these two villages paid 150,000 Ugandan shillings ($88 US), 4-5 goats/sheep, and one chicken for the removal of yat. The families pointed out that in addition to the enormous loss of loved ones there was also an incredible loss of family assets trying to treat those that were ill. These were major yat removals, but it should be pointed out that yat removal (tak is the name of the process to remove the object) is common practice among healers to treat joint pain, inflammation and a variety of other illness, and is much cheaper to treat.

In early October, people began to realize that this was more than a regular kind of illness and began to classify it as two gemo, the second explanatory model in Table 1. Gemo is a spirit (usually jok, but can be tibo) that comes suddenly and rapidly and effects many people, often causing many deaths. Two means illness. It comes like the wind (yamo) in that it is invisible, but the wind itself does not necessarily bring it. Many people preferred to call it yamo rather than gemo, reportedly out of respect of jok. Acholi have experienced several types of gemo (e.g., measles (anyon), smallpox (odyee) and meningitis (otel tok)). Most Acholi believe that EHF is a type of gemo. Fifty adults were given a list of illnesses and asked if which ones were types of gemo and 98 percent of them indicated Ebola fell into this category. The term "two gemo" was also used in health education posters and music.

Gemo is said to be rather mysterious in that is just comes on its own, but several people indicated that it comes because of lack of respect and honor for jok. People talk about gemo catching you, so if someone is close to a person with gemo it is easier for gemo to catch you. Once an illness is identified as gemo a protocol for its prevention and control is implemented that is quite different from the treatment and control of other illnesses. The protocol is listed in Table 2. There was some variation in how many items an individual spontaneously listed, but all emphasized isolation of the patient and limiting everyone's movement. From a biomedical perspective, the protocol is a broad-spectrum approach to epidemic control. Isolation and identification of the patient's home and village are central, but sexually transmitted and food-borne transmissions are considerations reflected in the protocol. Elders indicated that this protocol existed before the arrival of the colonials.

Table 2. Acholi Protocol to Control Epidemics (gemo).

These methods are utilized only when the illness has been identified and categorized as a killer epidemic (gemo).

Chani labolo is a dried banana leaf bracelet that is worn by men or women to protect and chase away gemo. After wearing it 3 (men) or 4 (women) days one removes it and throws it to the west late in the evening, telling gemo it has overstayed and wishing it to go safely. Traditional healers can use their jok to see what the gemo/jok wants, organize rituals to make sacrifices and use their adja (gourd rattles) and spears to chase gemo away. Some healers had jok specific for gemo (gemo anyon [measles] in particular) while others knew of herbs for the treatment of gemo. Three of the four traditional healers interviewed indicated their jok told them about the impending gemo before it arrived (i.e., in August).

Elders indicated that in the past, lack of respect for jok of tura (hills, mountains, bodies of water) was the major cause of gemo. They would ask the community to bring harmony to the household, implement the protocol and try to send away the gemo by sacrificing a human, preferably someone with a protruding belly-button, to show respect to jok. They moved to sacrificing a black ox and today they sacrifice a black chicken.

The third explanatory model in Table 1 is the biomedical model for EHF and was introduced to the area in late October. The MOH health education program was multidimensional (posters, radio shows, videos, brochures, etc.) and did an excellent job of transmitting this model. Many people referred to Ebola as a "disease of contact" in large part due to health education.

Table 1 also points out that most people saw a political dimension to the explanatory models of EHF. Many people felt that EHF came from infected Ugandan soldiers returning from DRC. People felt that the current government has little interest in the North so when soldiers became infected in DRC, it was decided to send them to military bases in Gulu. Some of the first victims of EHF had relationships with men in the military, but existing epidemiological evidence does not support the DRC origin hypothesis. The origin of this outbreak is not known. Political dimensions to disease, killer epidemics, in particular, are common. My study of EHF in Gabon indicated that local people saw the French military as responsible for the introduction of the disease.

Most people appear to integrate the three explanatory models. Health care workers emphasized the biomedical model, but many of them participated in ryemo gemo when it passed through the community. Rural communities such as Rwot Obillo turned to the yat and gemo explanatory models, but did not hesitate to purchase tetracycline and other medicines to treat cases of EHF. The first two explanatory models may seem strange to international health workers, but they reflect a holistic view of illness common to most people in the world. Acholi are aware of the biomedical model, but view illness as having more than just a biological dimension. Illness also has social and spiritual dimensions. The epidemic control protocol is Table 2 is a good example. Family members do not have sex and stop quarreling to show respect to jok (spiritual) and increase family harmony and peace (social).

There was a concern that burial practices contributed to the amplification of EHF. A brief study indicated that once a person died his/her paternal aunt (father's sister) was called to wash and prepare the body for burial. Informants indicated that this would be too emotionally painful for the mother, father or spouse. If the father did not have a sister, an older woman in the victim's patriline was asked to prepare the body. Generally, the woman took off the clothes, washed the body and put on the victim's favorite clothes. At the funeral all family members ritually washed their hands in a common bowl and during open casket anybody could come up to the victim and give a final love touch (called bong okom) on the face or elsewhere on the body. The body was then wrapped in a white cloth or sheet and buried. The person was buried next to or near their household.

This is the normal system of burial. As mentioned in the protocol in Table 2, burial practices change when the disease is classified as gemo. In such cases the body is not touched and is buried outside or at the edge of the village. The designated caregiver, someone who has survived the gemo or an older woman, is responsible for washing and preparing the body for burial.

The study of how diagnostic EHF survivors felt they contacted EHF gives some idea as to the impact of burial practices.

Table 3. How survivors thought they contracted EHF (more than one response possible per informant).

Percentage

Washing the body was a possible means of infection for women only, while a love touch was a more common means of infection among men. It should be noted that 63% of the survivors in this study had their first symptoms in October; this implies they probably became infected before laboratory tests confirmed EHF and it was designated as a type of gemo in many communities. Table 3 also indicates that caregiving, especially by women, contributed substantially to a number of cases. The table explains, in part, why 67 percent of all presumptive EHF cases are females.

There was also concern that people did not come in for treatment when ill because they were afraid of being buried at the airfield. Open-ended interviews indicated this was not a problem. Under normal conditions people are buried at home so the tibo feel comfortable and can be taken care of, but as the gemo designation indicates, these were not normal conditions. Informants indicated that in the near future they would go to the gravesite of a family member at the airfield, take some soil, bring it back to the household and conduct a ritual to call the tibo to the house. Some informants mentioned singing and using a spear and horn flute (bila) for men or a glowing log, leaf of olwedo tree (oboke) and egg for a woman to call the tibo to the home. When tibo entered the home, the door was closed for three days for men and four days for women. The return of tibo will restore harmony in the household.

The point is that local remedies existed to deal with unusual burials, such as those at the airfield. Fifty adults were asked if it was a good idea to bury individuals at the airfield and only two individuals (4%) objected. One individual suggested that health workers should have been trained to handle burials at home, but most agreed with the decision because it decreased transmission in the village. Again, this burial practice is consistent with the intent of Acholi protocol for the control of gemo.

Most people who did not get sick did not mind burying others at the airfield, but there is always the possibility that those that did develop symptoms did not go to the hospital right away because they feared being buried far away from home if they died.

Informants indicated that many families did not seek treatment quickly for a family member because they feared they would never see the family member again once they were admitted to the hospital. This fear is common in many parts of underdeveloped areas of Africa, but was especially pronounced here because bodies were placed in body-bags and taken to burial without informing relatives. Relatives were not always around at the time of death and health workers were required to dispose of the body as quickly as possible. The anger and bad feelings of not being informed was directed toward health workers in the isolation unit. This fear could have been averted by allowing family members to see the body in the bag and escorting the body to the burial ground.

Discussions with international health workers and local people gave the impression that traditional healing practices of some healers (ajwaka) led to the amplification of the outbreak. There were reports of healers treating and infecting people while they were sick with EHF. Alice Langwen, a healer and one of the earliest EHF cases, was often mentioned as an example. She had two houses--one in Rwot Obillo and one in Coopé, near Gulu. In September she traveled from Coopé to Rwot Obillo a few days after treating Awete Ester. She became ill and eventually died in Rwot Obillo. She had all of her healing implements in Coope because Rwot Obillo is a rebel area and rebels kill healers that have jok (i.e., the rebels view them as contrary to ways of God). She infected many people not because she was a healer, but because she was a prominent person. She had many caregivers while she was ill and several people assisted in the washing of the body. My records indicate she infected ten family members that later died, including her nursing son. She apparently treated Awete before traveling and this could have led to her death.

As mentioned above healers no longer cut the skin to remove yat. Some still cut the skin to insert medicines or herbs, but this is infrequent today due to AIDS health education provided to traditional healers.

There are many traditional healers in Gulu District. The chairman of the traditional healers indicated that 76 were registered and he estimated that there were over 100 in the district. They are substantially more traditional healers per person in Gulu District than there are physicians.

The term traditional healers is used in this report because it is commonly used by WHO and other international agencies. In the Gulu area they are often referred to as "witchdoctors" in English. Both terms misrepresent the nature of what they do. The term traditional gives the impression that their practices have not changed since time immemorial, when, in fact, they are always changing their practices. For instance, they no longer suck out yat with their mouths because a healer sucked yat out of someone with AIDS and later died from the disease. Today they use a local sponge or type of grass to extract yat within a patient's body. The term witchdoctor is even more misleading because witches (called night dancers or lajok) are relatively uncommon in this area by comparison to the Bantu-speaking areas to the south, and few healers know how to treat it. "Indigenous healer" may be a more appropriate term.

The reports of Francis Kiza and Kabann Kabananukye will emphasize this aspect of EHF so I will only mention a few items. When 50 adults were asked when would they feel comfortable touching a person that survived Ebola--day of hospital release, after two weeks, after one month or more than one month--the most common response (49%) was one month after hospital release. This is consistent with the epidemic control protocol described in Table 2.

Many survivors experienced intense stigmatization. Some were not allowed to return home, many had all their good clothes burned, and some had they spouses abandon them. Their children were told not to touch them and wives told to go back to their home villages. The discrimination also extended to family and village members. For instance, community members from Rwot Obillo, one of the first villages impacted, were regularly turned away at the market place and water hole. One man eventually committed suicide, in part, due to the loss of his wife to EHF, but also reportedly due to the stress of rejection, harassment and discrimination in public because of his association with EHF.

The survivors' questionnaires suggested that women experienced somewhat greater stigmatization than men. Table 4 summarizes some of these preliminary findings.

Table 4. Types of places rejected upon return to the community

Percentage of Yes Responses

Compensation to victims of EHF (survivors, orphans, etc.) was being discussed just before I left. While these issues have probably already been decided, some community members mentioned some concerns. Some mentioned that if an individual receives compensation that other community members may in turn request compensation from them. For instance, if a man's wife went to her home village to help with the burial of a family member who died of EHF and then she died as result of her participation, the husband's family may request compensation from the wife's family for the loss of bride price (payments by the husband's family to the wife's family for the marriage) . Likewise, if someone invites a friend or in-law to a funeral of a victim of EHF and they die later on from the illness, the family (lineage) of the friend or in-law may request compensation.

Fred Dunn, a physician and anthropologist, developed a simple model for integrating anthropological work into disease control efforts. The model is useful because it emphasizes identifying both health enhancing and health lowering beliefs and practices of both the local and international/national communities. Many behavioral studies tend to focus only on how local beliefs and practices amplify the disease (i.e., how "traditional" burial practices amplify); little attention is given to how local peoples beliefs and practices might contribute to control efforts. Many models also do not examine the beliefs and practices of the biomedical community. The data from the limited study described above are placed in Dunn's model below.

1. Indigenous protocol for epidemics (see Table 2)

2. Elders sought to help organize the community

Neutral--in the community(do not help or hinder)

DISCUSSION AND CONCLUSIONS

Most national and international physicians, nurses and health care workers are supportive of behavioral studies, but most of them do not have the time, especially in outbreak situations, or tool kit to conduct the kinds of studies that might be useful. In the short run, behavioral scientists can contribute to: 1) epidemiological studies (how to identify individuals, personal naming system, kinship terms, clan names); 2) doctor-patient relations (international health care workers understanding of local explanatory models); 3) control efforts (cultural practices and beliefs that may be amplifying outbreak, identifying and mobilizing existing cultural institutions); and, 4) health education (which cultural practices and beliefs to build upon, where to focus change). See Appendix A for a detailed list of the potential roles of a behavioral scientist during the various phases of an outbreak.

Many national and international health workers tend to view cultural practices and beliefs as something to overcome, and it is true that certain cultural burial practices (washing the body and love touches) initially amplified EHF. But once people realized it killed rapidly and classified it as gemo, a different set of cultural practices and beliefs were set in place. It is my belief that one reason the health education program worked so well was that it was in many ways consistent with indigenous epidemic control measures (isolation, suspension of greetings, dances, public funerals). Even the burying of victims at the airfield, while a bit dramatic for many, was in a limited way consistent with burying gemo victims outside or at the edge of the village. The adult questionnaires demonstrate that 96 percent of the people thought it was reasonable to bury people at the airfield. People now want to take some of the soil from the graves of family members to help call the tibo back to their households.

This research has to be considered preliminary and limited; more behavioral studies of EHF are needed. I was delighted MOH supported Mr. Kabann, an anthropologist from Makerere University, to conduct a behavioral study of Ebola stigmatization. While Mr. Kabann was in Gulu he went with us to Rwot Obillo for interviews and participated with us in the survey of Gulu high school. We discussed his research design and how we might collaborate in each others' studies. He now has the original copies of the high school survey, which he conducted with us, and open access to the survivor and adult questionnaires. He asked me to be a member of PhD committee so I hope it is a long-term collaboration.

I also had several meetings with Francis Kiza, a student in the medical officers training school, who wanted to do a KAP study of Ebola. We narrowed his study to social-psychological impact of Ebola on survivors and developed and administered a short questionnaire. Some preliminary results of that survey are summarized in this report. I also reviewed the KAP study of health workers of Outara Steven White. The questionnaire was already being administered and looked quite good.

First I would like to thank all the families and individuals who openly shared their often devastating Ebola experiences with me. Second, this study would not have been possible without Richard Amola, my research assistant from the Gulu District MOH. He was a sensitive and insightful ethnographer and made many significant contributions. Finally, I sincerely appreciate the support of the following members of the WHO team: Dr. Cathy Roth, Dr. Thomas Oyok, Dr. Paul Onek, Mr. Okot Lokach, Dr. Claudio Blé, Dr. Dan Bausch and Mr. Chris Lane.

Appendix A

The following outline of activities for a behavioral scientist was developed with the assumption that there are generally five groups of national and international specialists in an outbreak response team--epidemiologists, health educators, clinicians, diagnosticians (i.e., microbiologists, laboratory specialists) and managers.

As soon as a case is confirmed a behavioral scientist should be contacted to do the following from his/her office or laboratory.

1. Identify and contact ethnographer(s) that have conducted research in the impacted area to discuss aspects of culture that may be useful in the control of the specific outbreak (e.g., healing systems, burial practices, kinship systems, food exchange systems, etc.).
2. Conduct a rapid literature review of the peoples and cultures in the impacted area--e.g., ethnographic encyclopedias, Ethnologue, Human Relations Area Files (HRAF), Ethnographic Atlas, Internet sites, and other easily accessible references.
3. Write a 2-4 page summary of the results of the above reviews and provide this summary to WHO to distribute to all team members going to the field.

(estimated time to complete: 2-3 days)

After the preparedness report is written the behavioral scientist should go the field. The following activities are in approximate chronological order.

1. Assist with descriptive epidemiology of early cases (e.g., demographic information, transmission patterns, kinship charts, treatment seeking behaviors, etc.); develop understanding of naming systems (i.e., how one acquires a name, how to distinguish male and female names, clan or other corporate group names); assist epidemiologists to develop culturally sensitive and appropriate case record form. (2-4 days)
2. Begin the study of explanatory models for the disease--interview traditional healers, elders, survivors, health care workers, etc. Identify local political, economic, social and religious structures/organizations that might assist in control efforts. (6-10 days)
3. Help develop immediate control measures (e.g., hygienic measures, immediate health education) and participate in the development of preliminary hypotheses to explain the disease (in particular, hypotheses regarding who is at risk and modes of transmission).

Once the behavioral scientist has been in the field for two weeks or so, s/he should have enough preliminary information to incorporate specific findings into various components of outbreak response.

4. Training for clinicians and laboratory workers (especially those collecting blood or other samples from the community) on the behavioral aspects of the disease to enhance physician-patient relations and community trust.
5. Collaborate with health educators to develop health education messages and strategies that are culturally sensitive and appropriate. Immediate health education should have already started, but the new information can assist in expanding and refining health education. Participate in training of health workers and other community members who are providing health education.
6. Assist epidemiologists with kinship charts and other tools to follow transmission patterns.

This intermediate phase should emphasize keeping a keen ear to the ground to anticipate or identify emerging problems in all aspects of control: management, education, clinical and diagnostic services, epidemiology.

1. Work closely with health care workers who provide services to the sick, exposed and survivors to identify emerging problems/issues (e.g., complaints, fears, etc).
2. Identify and follow key or problematic cases to evaluate treatment-seeking and changes in explanatory models.
3. Work with survivor families to help determine their immediate (e.g., stigmatization) and future (e.g., if some compensation becomes available; locate local and national NGOs that may assist with orphans) needs.

As the number of cases declines, more time can be devoted to basic behavioral research--i.e., investigating specific behavioral research hypotheses that may be useful for future outbreaks.

1. Develop and administer systematic questionnaires to the following groups:

1. general community members (men, women and children) to determine validity and utility of explanatory models, treatment-seeking, health education messages and techniques;
2. survivors to understand persistent symptoms (and other clinical concerns) and problems with re-entering the community (stigmatization);
3. health care workers to determine their understanding of the disease, family problems related to the outbreak, etc.

1. Assist impacted families (e.g., survivors, orphans, etc.) in organizing and

locating national or international assistance.

C. Write a report for the MOH before leaving the field.

1. Collaborative efforts with national behavioral and social scientists should be established as early as possible.
2. The behavioral scientist should identify and work with local specialists who may be useful in the control of and research on the disease, such as 1) hunters who may be aware of similar epidemics among animal species (e.g. Ebola, monkeypox); 2) herbal specialists that successfully treated cases of the disease; and, 3) community health workers who might assist with surveillance.
3. Little is mentioned about managers. It is assumed that the behavioral scientist would meet regularly with coordinating managers.