de Vries et al. BMC Public Health (2016) 16:161
DOI 10.1186/s12889-016-2852-0
RESEARCH ARTICLE
Open Access
The first mile: community experience of
outbreak control during an Ebola outbreak
in Luwero District, Uganda
Daniel H. de Vries1*, Jude T. Rwemisisi1,2, Laban K. Musinguzi1,3, Turinawe E. Benoni1,3, Denis Muhangi3,
Marije de Groot1, David Kaawa-Mafigiri4 and Robert Pool1
Abstract
Background: A major challenge to outbreak control lies in early detection of viral haemorrhagic fevers (VHFs)
in local community contexts during the critical initial stages of an epidemic, when risk of spreading is its
highest (“the first mile”). In this paper we document how a major Ebola outbreak control effort in central
Uganda in 2012 was experienced from the perspective of the community. We ask to what extent the
community became a resource for early detection, and identify problems encountered with community
health worker and social mobilization strategies.
Methods: Analysis is based on first-hand ethnographic data from the center of a small Ebola outbreak in
Luwero Country, Uganda, in 2012. Three of this paper’s authors were engaged in an 18 month period of
fieldwork on community health resources when the outbreak occurred. In total, 13 respondents from the
outbreak site were interviewed, along with 21 key informants and 61 focus group respondents from nearby
Kaguugo Parish. All informants were chosen through non-probability sampling sampling.
Results: Our data illustrate the lack of credibility, from an emic perspective, of biomedical explanations which
ignore local understandings. These explanations were undermined by an insensitivity to local culture, a
mismatch between information circulated and the local interpretative framework, and the inability of the
emergency response team to take the time needed to listen and empathize with community needs.
Stigmatization of the local community – in particular its belief in amayembe spirits – fuelled historical distrust
of the external health system and engendered community-level resistance to early detection.
Conclusions: Given the available anthropological knowledge of a previous outbreak in Northern Uganda, it is
surprising that so little serious effort was made this time round to take local sensibilities and culture into
account. The “first mile” problem is not only a question of using local resources for early detection, but also
of making use of the contextual cultural knowledge that has already been collected and is readily available.
Despite remarkable technological innovations, outbreak control remains contingent upon human interaction
and openness to cultural difference.
Keywords: Ebola, Viral haemorrhagic fever, Outbreak control, Uganda, Amayembe, Spirits, Witchcraft,
Community health resources, Anthropology, Luwero
* Correspondence: d.h.devries@uva.nl
1
Department of Anthropology, University of Amsterdam, Amsterdam, The
Netherlands
Full list of author information is available at the end of the article
© 2016 de Vries et al. Open Access This article is distributed under the terms of the Creative Commons Attribution 4.0
International License (http://creativecommons.org/licenses/by/4.0/), which permits unrestricted use, distribution, and
reproduction in any medium, provided you give appropriate credit to the original author(s) and the source, provide a link to
the Creative Commons license, and indicate if changes were made. The Creative Commons Public Domain Dedication waiver
(http://creativecommons.org/publicdomain/zero/1.0/) applies to the data made available in this article, unless otherwise stated.
de Vries et al. BMC Public Health (2016) 16:161
Background
The first mile in disease outbreak control
There is general agreement that community members
have a key role to play in early detection of Viral Haemorrhagic Fevers (VHFs) such as Ebola. Indeed, one of the
greatest risks in the spread of VHFs is people lingering in
the community without knowing they have contracted the
disease [1]. At the start of the 2014 West African outbreak, Ebola spread unnoticed for three months [2].
Recent data suggest that the period of infectiousness in
the community was five days on average, and at worst,
more than 40 days [3]. Without effective isolation, it is
estimated that each Ebola carrier transmitted the virus to
between one and eight additional people, leading to a
doubling time of around twenty days [4]. Early detection
in the community presents a major challenge however,
due to the difficulty for community members of recognizing nonspecific and common early symptoms such as
fever, nausea, vomiting, diarrhea, and weakness. This is
exacerbated by a general lack of local knowledge about
biomedical explanations and by competing indigenous
explanatory frameworks. The problem of how to engage
local community members effectively in early detection
when they remain typically outside the reach of the health
system is reminiscent of an inverted scenario dubbed by
disaster managers as the people-centered “last mile” of
early warning [5, 6]. In the last mile, scientific information
may be present about an imminent hazard such as an
earthquake, but the early warning does not reach the
communities on the ground in time, and is therefore
futile. We suggest that the “first mile” of VHF outbreak
control presents us with a comparable challenge in
reverse: to try to capture timely information about an
imminent outbreak from the community on the ground.
To remedy the first mile gap, investment is focused
increasingly on technologies that accelerate bottom-up
information provision from communities to public health
level. Location-tagged community level mobile reporting
systems are linked directly to national command units
and international emergency aid agencies [1]. Uganda’s Ehealth infrastructure, for example, provides a foundation
for “real time information sharing”, where information is
distributed instantaneously [7]. This is often seen as the
best solution to the first-mile problem: “With smartphones in the hands of all community health workers,
drivers, facility managers, and district health officials, it
should be possible to create a map of the epidemic in real
time” [4]. Yet, as in the last-mile problem – where investment in high technology fails to reach vulnerable
populations at risk – technology alone may fail to solve
the first-mile problem if community members are not
engaged. The real-time ideal collapses when those marginalized from the development process are left out of the
community detection process [5, 6].
Page 2 of 12
Can a more “people-centered” early detection system
also be achieved? The standard response to this question
is to suggest an enhanced role for community health
workers who should be “quickly trained and deployed to
identify people in the community who develop suspicious symptoms” [8]. Secondly, a “social mobilization”
agenda is often called for, where entire communities participate in “quickly identifying and isolating infected individuals before they can transmit the virus” [9] – or, as
the World Health Organization plainly puts it, “involve
everyone” [10]. Literature acknowledges that community
health worker and social mobilization strategies for the
facilitation of rapid outbreak detection should be combined with culturally appropriate community-based trust
building [11, 12].
In this paper we ask to what the extent the community
became a resource for early detection and outbreak control during the critical initial stages of the epidemic,
when risk of spreading was at its highest (“the first
mile”). We identify problems encountered with community health worker and social mobilization strategies.
Indigenous beliefs and Ebola
Indigenous representations of local responses to VHFs in
under-resourced contexts such as rural Africa often include
images of ignorance, exoticism and superstition, with “risky
traditional burial practices” typically cited to illustrate the
community as barrier [12–14]. As anthropologists have argued for decades, popular simplifications of community relationships create the impression that the local is stagnant,
illogical and ignorant, while representations of international
health communities tend to overemphasize collaboration,
cooperation and organization [15]. Previous to the 2014
West African outbreak, the anthropologists Hewlett &
Hewlett argued that representations of Ebola in the media
are seldom contextualized; “one is left with a feeling that an
outbreak is controlled only through Western biomedical
knowledge and technology, in spite of, not because of, the
actions of local peoples” [16].
Unfortunately, for the international health response to
Ebola, only a few case studies are available in published
literature detailing how such an outbreak is locally understood, responded to, and embedded within community
relationships. This may be because anthropologists were
invited late to participate in fieldwork relevant to VHF
outbreak control [16, 17]. The Hewletts published the first
anthropological account of indigenous reactions to Ebola
25 years after the first reported Ebola outbreak; they were
invited only after cases continued to increase during
Uganda’s 2000 outbreak, due to perceived “problems with
local people” [16]. The Hewletts reported that American
and Italian physicians working in isolation units had no
idea how local people explained or viewed Ebola, while
local northern Uganda health workers appeared unwilling
de Vries et al. BMC Public Health (2016) 16:161
to bring local cultural beliefs to the fore in an international healthcare response context. As the Hewletts
wrote: “They feared that others hearing them talk
about local beliefs would view them as backward,
primitive, and exotic” (p41).
Investigating the local cultural beliefs of northern
Uganda in the 2000 outbreak, the Hewletts documented
gemo as a “bad” spirit that arrives suddenly and causes a
mysterious illness within a very short time. They observed that gemo was associated with prescriptive behaviors and protocols for isolation of suspected cases, as
well as burial at the edge of villages; it was common
knowledge to children who had not learned about it in
school. Further, in both the Congo and Uganda cases
studied, they showed that as deaths continued despite
indigenous treatments, people shifted their explanatory
models from community illnesses to biomedical models.
From this perspective, the Hewletts and others have
argued for more respect and understanding and stressed
the central importance of trust and rapport with the
local community [13].
Ebola in Luwero
This paper investigates this trust and rapport more than a
decade later, in the same country that the Hewletts
worked in. After Sudan Ebola was confirmed in Luwero
County, the Ministry of Health set up a District Task
Force (DTF) with case management, surveillance, ecological, psychosocial and social mobilization teams. In
Luwero, the International Federation of Red Cross and
Red Crescent Societies (IFRC) funded and organized social
mobilization and psychosocial support. The IFRC pledged
to produce and disseminate context-specific information,
education and communication materials (38 K posters,
50 K leaflets and 120 T-shirts), conduct media campaigns
(5 talk shows and 400 radio spots), and conduct one field
media visit [18]. The IFRC enlisted and trained local
volunteers and local community health workers (VHTs) to
provide psychosocial support and built community trust
and confidence. According to the evaluation, this process
was successful and “put to a halt the spread of the disease
and limited mortality as well as contributed to the wellbeing of the community” [19] (P16). The evaluation
claimed that sensitization measures dissolved any myths
or misconceptions, influenced behaviors and practices and
provided psychosocial support, while information flow
enhanced visibility and public confidence in response
activities [19].
How did community members understand and experience the disease, and the external interventions
that arrived in its wake? Did the community become
a resource and partner – instead of a “barrier” – to
outbreak control efforts, effectively bridging the first
mile gap?
Page 3 of 12
Methods
The Ebola outbreak occurred in Kakute village in
Ssambwe Parish (population 9400), just 30 minutes by car
from our main field site. We were conducting 18 months
of ethnographic research in a number of villages in
Kaguugo Parish (population 4000), part of Luwero district,
75 km north of Kampala. As well as proximity, our main
field site was similar to Kakute village in terms of rurality,
Buganda culture and socioeconomic status.
Two months after Ssambwe Parish was declared free of
Ebola, on January 16, 2013, one of our Ugandan doctoral
researchers visited Kakute village to conduct interviews
with an Ebola survivor, the DTF Chair, village chair, two
nurses at isolation units, and one neighbour of the involved family. These key informant interviews were complemented by a focus group discussion comprising seven
Kakute village participants. A total of 13 Kakute respondents were interviewed. The informants in Ssambwe
Parish were chosen through non-probability “snowball”
sampling. A snowball sample is a non-probability sampling technique in which the researcher collects data on
the few members of the target population that he or she
can locate, then asks those individuals to provide information to locate other members of that population whom
they know. Snowball sampling is appropriate to use when
members of a population are difficult to locate, but is not
likely to provide a representative sample. In this case,
snowball sampling was used because outbreak messages
to the community had warned village residents to distance
themselves from possibly infected residents and their
“contacts”. As a result, key respondents had to some extent “gone underground” with respect to their beliefs. Our
researcher traced the infected family and community
members who had played a significant role influencing the
community’s Ebola history. In addition to this targeted
fieldwork in Ssambwe Parish, data from ethnographic
research in nearby Kaguugo Parish by all three Ugandan
doctoral students was used for this paper. Our team
observed and documented the outbreak response control
measures, and spoke about Ebola with an additional 21
key informant interviews and 61 focus group respondents.
Table 1 summarizes the total number and location of
all respondents.
All interviews were held in Luganda, the native
language of the Baganda, spoken by the doctoral researchers and their Baganda assistants. Interviews
were translated into English. Interview questions
were open-ended. No specific standard interview
instrument was designed for the purpose of documenting Ebola. Questions were developed in dialogue, guided by the ethnographic experience of the
interviewers. All interviews and focus groups were
audiorecorded, transcribed and analysed using the
NVivo qualitative software analysis program. Textual
de Vries et al. BMC Public Health (2016) 16:161
Page 4 of 12
Table 1 Number of key informants and focus group respondents
by location and Parish in Luwero County
Results and discussion
Location
Parish
# of key
informants
# of focus group
respondents
Totals
Bukuma
Kaguugo
3
8
11
Bunyenye
Kaguugo
0
16
16
The Ebola outbreak in Luwero can be traced to a
32-year-old Islamic Kakute village motorbike taxi rider
called Kabugo. His illness began with a fever in October
2012, which his family initially took for malaria. He
suffered for a week before being taken to a health center.
After a week of treatment, he spent a night at home where
his family saw that he was still not well, so they took him
to the hospital at the local army barracks. There, he
started vomiting blood. The hospital staff shifted him to
an isolated ward and took blood samples to establish the
cause of his illness. Kabugo died shortly thereafter, before
the results from the tests could be relayed to the family.
During his Muslim funeral, his body was laid for final
viewing during the night, and relatives and community
members touched and washed his body. He was buried
the following day according to tradition. During his
funeral, Kabugo’s widow Halima developed similar symptoms and was admitted to the health center. She was
attended by her mother-in-law, two sisters in-law, and an
aunt who spent the nights with them and left early in the
morning to attend to her business. The health staff at the
clinic suspected that the widow had malaria, but as she
tested negative the doctor concluded it was depression
because she had lost a husband, and allowed her to be
discharged. Her father took her to a traditional healer to
investigate the mysterious cause of her husband’s death.
She died shortly after. Two days later one of the
sister-in-law developed symptoms and died. Two days
after that, the second sister-in law died.
Staff at the health center started to suspect Marburg
disease, and samples obtained from the patients were
shipped to the Uganda Virus Research Institute. When
these tested positive for Sudan Ebola, the Ministry of
Health declared an Ebola outbreak on November 16,
2012, and established an isolation center. By November
28, there were six confirmed cases and one probable
case, including four deaths (two from the same family), in
Luwero and Kampala [19]. Twelve suspected cases tested
negative. Medical personnel noted that their experience of
earlier outbreaks of Ebola and Marburg in nearby regions
helped them to deal with this outbreak; measures included
pooling staff at national level from other parts of the
country, extra training, mixing experienced staff with new
staff, and provision of psychosocial support for medical
staff. One medical respondent noted:
Dekabusa
Kaguugo
5
15
20
Kakute
Ssambwe
6
7
13
Undefined
Kaguugo
3
8
11
Kyetume
Kaguugo
2
0
2
Ssakabusolo
Kaguugo
2
7
9
Totals
21
61
82
information was analysed using grounded theory.
Through review of collected data, repeated ideas,
concepts or elements became apparent, which were
tagged with codes and extracted from the data.
These codes were grouped into thematic clusters.
This resulted in the following themes: 1) critical discourse, 2) emergency response, 3) history of spread
in Luwero, 4) perceptions of Ebola, 5) post-Ebola
normalization, and 6) sources of information. These
themes are further explored and organized below,
divided into major subthemes summarizing the communal and indigenous experience.
Limitations to this method include subjective bias
that is always part of qualitative study. In this case
study, a major limitation is the short length of time
we were able to spend on the ground in Kakute community. We also only had opportunity to interview a
relatively small number Kakute residents, even though
the interviews lasted long enough to obtain needed
insight. However, we feel strongly that the ethnographic
understanding provided by three separate ethnographers
in nearby Kakuugo Parish brings in-depth substantiation of prevailing community attitudes. We observe
little cultural difference with nearby community of
Kakute. Further, while qualitative and/or ethnographic
studies are also limited in generalizability, results provide conceptual frames of reference that help understand dynamic processes otherwise not easily captured
using statistical methods.
The manuscript was reviewed by all authors, and
further insights were added, arising from on-going
dialogue in weekly group meetings of the research
team. Ethical clearance was obtained from the School of
Public Health at Makerere University College of Health
Sciences (Reg. Number 158) and Uganda National Council
for Science and Technology (Reg. Number SS 2754).
Written informed consent for participation in the
study was obtained. Observation was conducted with
the approval of village chiefs. No children participated
in the study.
The outbreak
In Gulu over 200 people died; in Bundibugyo, over
30 people died; in Kibale about 17 died. So what
I could ultimately say is that controlling the
epidemic in a short time with minimal loss of life
is the best thing we gave to the community. It
might not be easily visible to some people, but as
de Vries et al. BMC Public Health (2016) 16:161
part of the system I think that was a very big
achievement or reward. It is the lowest number.
One DTF member said that as death in Africa can
sometimes be attributed to witchcraft, the main focus of
the social mobilization team was to strengthen the
community component which delivered the “actual definition by the health system of the problem, and how it
can be prevented”. The member noted that to convince
the community, the outreach response team used a
clinical presentation that focused on clinical symptoms
in order to dismiss ideas of witchcraft. The team’s main
aim was to change people’s behaviour quickly:
And what you are aiming at in an epidemic is how to
change people’s behaviour very fast. So we aim
primarily at changing behaviour to control the spread
of the infection. All the other things come later.
This behavioural change was generally perceived to be
a “fight against misconception”. According to our DTF
respondent, this fight was won by the social mobilization
team, which succeeded in getting the facts across. “That
is why we were able to contain it. We lost only five
people from the same village, the same family.”
Spirits
However, in Kakute, there was little evidence to support
the idea that social mobilization had been a success. The
majority of villagers continued to attribute Kabugo’s
illness to witchcraft by his mother. One community
member noted:
There is nobody in this village who believes that it
was Ebola. The people did not even think of any other
name for the disease because they were sure that it
was amayembe.
Respondents noted that even the local motorcycle
(bodaboda) boys who had worked with Kabugo did
not believe that he had died of Ebola. The local explanatory framework supporting this interpretation was in place
before Ebola was diagnosed; when Kabugo fell ill, a traditional healer argued that someone had bewitched him. It
was said that when Kabugo and his kin sought charms,
called mayebe, to remedy the witchcraft, one of his brothers refused to be involved, fearing that the spirits would
mix with evil spirits – kifaluu amayembe – and cause the
whole family to die. His fears seemed to be substantiated.
His father, accused of witchcraft, was murdered; his own
brothers among the killers. Upon his death, Kabugo
collected his father’s spirits, and unable to meet their
needs, became mortally ill. A local traditional healer then
warned that his death would be followed by many more in
Page 5 of 12
his family. Stories were also circulating that Kabugo’s
mother-in-law had used evil spirits to kill his wife, with
whom she had had an acrimonious relationship. Community members asserted that in one of her many quarrels
with Kabugo’s wife, the mother-in-law brazenly undressed
and showed her bare buttocks, a sign that she cursed her
son’s family. They also believed that when Kabugo’s body
was brought home, a bat entered the house and disappeared into the body of one of his sisters. The community
accused his mother of using amayembe to kill her children
and obtain their property. After Kabugo’s death, community members went to her home to burn her house down
and demand that she leave the village. Although her
husband was able to prevent the burning, she did leave.
Members of the Ebola team got wind of this event, found
her on the road and took her to Mulago Ebola Response/
Treatment center in Kampala for monitoring.
Community members believe in various types of
amayembe: some benign, such as sources of fertility, and
others malicious (kifaluu amayembe), used if a person
has ill feelings towards someone, or is simply greedy and
enlists supernatural forces for their own gain. Moving
around at night, these spirits “eat” people and animals
by sucking blood, knocking on doors, and raping
women. When out of control, however, amayembe may
turn against their buyers, their families, and sometimes
beyond, particularly if their owners fail to provide sufficient sacrifice, in the form of goats or people, in return
for the wealth that has been promised. In stories, community members describe seeing amayembe or their
traces. For example, a 25-year-old Kaguugo man vividly
described how his whole town went “on fire” when the
local healer who came to deal with the amayembe fell
out of a tree while chasing after it: “We thought he had
broken his legs, but he would run while hitting his hands
as flames would be seen, and there he was chasing the
amayembe.” The idea of greed often plays a role in the
amayembe narrative, suggesting that the concept represents an embodied rationalization of paranoid suspicion
[20] and a social leveling force, both undermining and
facilitating inequalities in wealth and power [21]. One
respondent related the emergence of amayembe to a time
when there was a lack of unity in the local community
because “some people didn’t behave well”. Amayembe also
trigger social isolation. Those who get in trouble are not
only punished (through illnesses) by the amayembe, but
they are also ostracized by the community. This is
essentially an outbreak prevention strategy. A Kaguugo
villager noted:
You see there are those who buy amayembe in this
area. Now, if those amayembe kill people in the
village, we give up on such a person in the village.
We stop dealing with such a person. So it means that
de Vries et al. BMC Public Health (2016) 16:161
even when such a person loses someone, he has to
care for his own needs (Tumusamu).
Amayembe may also be thought of as a system of belief
that falls outside governmental control because – as many
community members noted – the government does not
acknowledge its existence. Amayembe are the domain of
traditional healers at odds with a biomedical public health
system. As a Kaguugo community member said:
So the greatest challenge is that when you report that
people are dying because of amayembe they will ask
‘what is amayembe?’ and you really cannot prove their
existence. So that is why many people are dying and
the government cannot do anything.
The difficulty of dispelling amayembe
The amayembe interpretative framework described above
leads to a credibility problem for biomedical explanations,
which are seen as unclear and illogical interpretations of
the genesis of particular outbreaks in the context of
traditional aetiologies. This is not to say that the
community was entirely united in this perception.
Some community members likened the disease to smallpox (kawumpuli). But the belief that the disease was not
Ebola was corroborated by logical observations made
by the majority of the Kakute community and affirmed by
Kaguugo locals. Crucially, the deaths occurred only in one
family, and specifically affected people who the mother
did not like. This despite the large number of people who
had been in physical contact with the first patient, including the traditional healer. It was simply seen as unbelievable that a very infectious disease would not affect any of
these other people. Furthermore, Kakute villagers argued
that while health workers stated that Ebola causes victims
to bleed from every pore and die within 24 hours, patients in Kakute lived for at least a week, did not
bleed from every pore, and did not always suffer from
high temperatures. In addition, it was locally known
that previous Ebola outbreaks, in particular that in
Kibaale the same year, had also primarily affected
members of the same family (13 out of 17) [22].
Luwero residents further argued that the public health
authorities had not connected the case of those who
died in Kibaale with “eating infected animals”, a
warning which figured prominently in the information
circulated to the community, and there was no evidence that Kabugo or any of the other victims in
Luwero had eaten wild animals such as monkeys
before falling ill.
To confirm whether this disease was indeed Ebola,
community members monitored one female neighbor
who had interacted heavily with the diseased victims,
as her house was surrounded by those of the family
Page 6 of 12
involved. Community members said that “even if she
had just got a headache they would all scamper for
safety, knowing that it was indeed Ebola.” This case
was a yardstick for the community, and because she
did not suffer any health problems, community attitudes did not change. The woman herself believed
that God had saved her. Locals began to call for traditional healers to come and investigate exactly what
had attacked the community. As a Kakute community
member noted:
Even when the health workers came, the people
asked them if they had considered investigating if
these could be spiritually instigated attacks. They
suggested that since we had used side A [medical
approach] and people continued to die, we should
switch to side B [traditional healers] to see if the
problem could be properly diagnosed. But this was
not done because the authorities insisted that
people should accept that this was Ebola.
Community members asked the district chairman to
send traditional healers to make their assessment of
the situation. But this was stopped by police intervention,
to prevent revenge killings of those villagers who
might be identified as spreading amayembe. A Kakute
resident noted:
The head of Police in the district said that he would
arrest anyone who promoted the idea that the deaths
were due to amayembe, and threatened to take stern
action if anything happened to those suspected of
bringing amayembe. He read out some names of
those who had been listed as promoting this thinking
among the community, and people got scared of
discussing it much.
By the time the health authorities ruled that people
should avoid attending large gatherings, the community
was still preoccupied with ways to establish whether
amayembe was to blame. Gatherings continued with
public testimonies, one of which involved a daughter
from the affected family “testifying” that her mother
had amayembe. Community members said that according to the daughter, the spirits had “asked for the lives
of seven family members and thirty from outside the
family after the seven had died.” This led to increased
fears within the community. One resident explained
that he fled the village when the seven Ebola cases were
about to be reached, for fear that he would be among
the thirty who would subsequently be sacrificed from
outside the family. Ironically, because people did not continue to die, this discourse strengthened local conviction
that it was indeed, after all, amayembe, and not Ebola.
de Vries et al. BMC Public Health (2016) 16:161
The community as barrier to outbreak control
When Ebola outreach workers tried to provide relief
items to the children of the husband of one of the
female Ebola victims, he refused them entry unless they
admitted that his wife died not of Ebola, but because
of amayembe. Such resistance to medical interpretation was widespread. The IFRC evaluation report
noted a “strong negative community reaction”, which
eased over time, but did not disappear. One community member belonging to the social mobilization
team noted:
It was like talking to mad people. They were angry,
with some of them totally rejecting the message, while
some agreed, but we did not really change the
thinking of many that it was not amayembe. Generally
the outbreak did not change the cultural beliefs of the
people, and the people were not scared to talk to
medical personnel who had touched patients.
One of the surviving Ebola victims described how he
was returned to Kakute village in an ambulance because
the doctors wanted the villagers to see that the survivors
had indeed been treated at the hospital, and not by
traditional healers. But community members shouted
that the survivors had bribed the medics to say it was
not amayembe and they argued that he had survived
Ebola by escaping from Mulago to visit a traditional
healer back home.
Eventually, the community’s resistance to biomedical
interpretation was met with government oppression. A
Kaguugo district community leader told us that while
communities were disputing health workers’ claims
about Ebola, district level government officials arrived
with armed law enforcement to convey the seriousness
of the issue. One Kakute respondent noted:
They warned that anyone who continued insisting
that this was not Ebola would be dealt with
according to the law. So that is why people started
to listen quietly and behave [laughs]. So we needed
that kind of authority to sit and listen to the health
workers. We attended those sensitization sessions
through the barrel of a gun. Before the government
used force, people would come to the sensitization
sessions, argue with the health workers and disrupt
their sessions. But when the guns came in they had
to sit and listen.
Even the youths, “the most critical audience within the
village” , were forced to attend and listen, but it is
unlikely that this strategy changed their minds. Rather, it
reinforced historical mistrust of a chronically underfunded medical system.
Page 7 of 12
Community members themselves provided hints in
our interviews of how trust could have been built if the
approach had been different. They argued that much
could have been achieved had the response been speedier, with a concerted effort showing the community that
the medical system actually cared for their thoughts and
wishes. After confirmation of Ebola, our respondents
noted that social mobilization came too slowly to counter the growing amayembe interpretation effectively.
This delay in outreach had serious consequences. As a
Kakute villager noted:
But for us when Ebola was suspected we kept
expecting the health teams, but they did not turn up
until a week later. So we thought that they did not
care about us because for a whole week after the
outbreak there was no health personnel to inform the
people on how to go about it…
She argued that this perceived lack of concern and
information from health workers escalated the idea that
it was amayembe: “So I think if they had come earlier the
health workers would have had less difficulty convincing
the community about Ebola.”
The health system may have been slow to respond for
several reasons. There is the practical challenge of getting samples, confirming lab results, and assembling and
coordinating the response team and necessary logistics.
One of our health worker respondents noted that there
appeared to be conflict among the leadership over who
was in charge. She also said it was difficult to persuade
her colleagues to take the disease seriously:
I really felt that they were not serious. At that time we
thought that the disease was Marburg and were very
worried and anxious to know the results. Our
colleagues from other sections had begun to distance
themselves from us. We needed the results to know
what we were dealing with, but it took them a
whole week to give us the results after they had
taken the samples. They took them on Thursday
and told us on Wednesday. It did not please us
that they were that lazy.
Respondents indicated that these delays were probably
the result of insufficient funds to transport materials.
However, the IFRC evaluation report noted that nobody
wanted to drive the volunteers or lend them their transport, because outreach workers were seen as potential
carriers, and people feared being associated with witchcraft [18]. When social mobilization did eventually start,
the 20 volunteers sent door-to-door by the IFRC lacked
sufficient material support, and experienced considerable
anxiety regarding their own family contexts. In addition,
de Vries et al. BMC Public Health (2016) 16:161
they were not well acquainted with the wishes of the
community. For example, they advised communities not
to shake hands but instead to knock fist (kubongo), a
practice locally associated with drug users and marginalized people. Moreover, the surveillance team appeared illtrained in methods to assess the logic and needs of the
local community. For example, Kabugo’s family neighbour,
the same woman who had been the local yardstick for
whether the disease was Ebola or amayembe (see above),
was denied testing. As she herself said:
A team of health workers came to our village and took
blood samples from selected people who were on their
list. I told them to take my blood too, but they insisted
that they were taking samples only from those who
were on their list. My neighbour here was also tested.
While the interview does not tell us who made up this
list, or what the criteria for selection were, ignoring the
communal yardstick for Ebola illustrates a lack of sensitivity to the value of local knowledge and relationships.
The IFRC evaluation report is strikingly focused on the
patients and the medical system. When suspected cases
were found, their isolated and even starving conditions
were exclusively attributed to witchcraft. The report
implied that it was witchcraft which caused “normal”
social support elements (e.g. bringing food and water) at
bay. When volunteers were asked about their motivation
to volunteer “in such a setting”, the report notes that they
felt it was “good to have the feeling that you were saving a
life and keeping people safe by sensitizing the community
who otherwise might have acted as far as killing the
patients” [19] (P19). Focused mostly on the health of
Ebola patients, volunteers, and health workers, the issue
of community stigmatization or marginalization was addressed only at the level of economic marginalization.
This discourse of framing witchcraft exclusively as a
medical risk is also present in the accompanying IFRC
strategy report, which explicitly noted that the disease
required – through “culturally acceptable” interventions
– “total behavior change from the community members
(they still believe they are being attacked by witchcraft
not Ebola) if the outbreak is to be controlled” [18] (p4).
While biomedically accurate, this approach clearly
failed to connect to local community health ideologies.
The discourse in the reports is against witchcraft – and
by extension, the community. This view that the community either needed change or was a barrier, instead
of a necessary ally, appeared to be promoted in the
media as well. For example, in an article on the Uganda
Radio Network, the Luwero District Health Educator
was quoted as having said that witchcraft allegations
were “dangerous because they water down efforts to
contain the deadly Ebola virus” [23].
Page 8 of 12
Mistrust of the health system
Kaguugo residents told us that the sensitization meetings failed to change their minds, and their interview
narratives suggest that any contradiction in the meetings
was seen as further evidence of a corrupt health system.
For example, it had been announced on the radio that
the government had released Ush600 million (approx.
USD 175,900) to assist areas affected by Ebola, but local
residents noted that they did not see any of this money.
In Kakute, a respondent noted:
For us, we told them that we do not have Ebola, but
they kept coming and we concluded that the health
workers just wanted to eat the money that they had
been given [laughs]. Yes. The truth needs to be told
sometimes. The health workers came just for
ceremonial purposes.
In a focus group held as part of sensitization meetings
at Luwero town council during the outbreak, one of the
respondents noted cynically that officials taught them
how to prevent the spread of Ebola, but did not provide
any water to wash their hands. Kaguugo community
members asked why there been so little help from relief
organizations despite calls for help by school heads. It
was also noted more than once that schools were given
just half a bottle of disinfectant to clean the entire
school, and that no health camp had been set up near
the community. And, as one focus group respondent
pointed out, “These health workers would tell us not
touch our patients who are ill, and at the same time
expect us to deliver them to the health centers!?”
Many statements exemplify a sentiment of marginalization.
People simply believed that while equipment and drugs
were available, they were not helped because they were
poor and unimportant. These words appear to have some
truth in them. The surviving brother noted that some articles allocated to him and his brother-in-law at Mulago
hospital – including new clothes and food items – never
reached them. He discovered about these allocations
through the health workers, who confirmed, on being
queried, that they were supposed to have received
these items.
Many locals remembered using an effective health care
system in the past, but explained that they had become
hostile to the system as the result of disillusionment
with competition and bribery in government hospitals.
To community members, this bribery was also
entrenched in the much heralded community health
worker system (VHTs) that consisted mostly of better
off community members, typically including village
chairs. Each village could pick one member to be sent
for DTF training in Kampala, but community members
argued that PLAN International would only select from
de Vries et al. BMC Public Health (2016) 16:161
the village leadership because they would hand out fees
and thus control the agenda. Many conversations in offices and verandahs led to the conclusion that Ebola was
an overblown conspiracy, developed to justify the allowances of medical personnel. Medical cases that seemed
to counter the amayembe interpretation, like the survival of Kabugo’s brother and brother-in-law, were explained as the result of the corrupt health system itself.
For rexample, according to the brother, some people
thought that he and his mother-in-law had become rich
as a result of the ordeal, as the radio had announced that
the government of Uganda had given each Ebola patient
three million Uganda shillings (approx. $860), which
they were accused of pocketing.
While the community mistrusted the health system’s agenda, it also simultaneously experienced
strong stigmatization from the outside world during
this period, suffering serious economic consequences.
As everyone was seen as contagious, the area had
become a “danger zone”. A Kakute respondent said:
The discrimination was such that wherever we went,
people would say that the people of Kakute village
have Ebola. Even the people of Ndejje [a nearby
community] did not want to pass through our road
saying that there was Ebola at Kakute. You see? And
even at the hospitals, the Kakute people were looked
at with suspicion. They associated us with Ebola. The
pregnant women who went for antenatal clinics
suffered most, as the nurses told them to wait or sit
aside as they treated others first.
As the idea of the contagion spread, so did the
geographic isolation. In a sense, community members
were right about amayembe contagion; now the entire
Luwero area had become a danger zone of cultural
stigma. Even health workers working within this community, helping the victims, were shunned by the public.
The crisis of care
Local aetiologies, a discourse of community as barrier,
and mistrust of the health system were major factors determining resistance, but it is equally, if not more, important to recognize that underlying this resistance was
a local need for care. This need reached crisis proportions. A Kaguugo respondent explained:
My heart is not settled because I am used to other
diseases that can allow your people to take care of
you… But for this disease, you cannot take care of
your people even when they are your father, your
mother, your child or even your husband. You just
run away from them! So the main question is ‘what
should we do?’
Page 9 of 12
Another Kakute resident noted that the inability to
help a parent or someone close when in need “may
haunt you forever”:
First of all she is my mother, and you are saying that
touching her will also make me sick. So I think they
have scared us too much, to the extent that one cannot
even show love to their loved ones. In fact your mother
can die cursing you if you don’t care for her when she is
sick. She can say ‘my child refused to care for me when
I was sick’ yet you haven’t really refused.
If one’s child catches Ebola, should a parent not touch
to see what is happening? Would a parent run away
from a child to save their own life? Should a neighbor
not help the same people that helped her the last time
she fell ill? The dilemma facing community members
was that complying with quarantine requirements also
introduced the risk of no longer being able to take care
of loved ones:
I think they should calm down and tone down the
scare. We know that the disease kills. I think they
should also distribute the items which they tell people
to buy like gloves, gumboots and soap. With those
items people can take care of their relatives who
develop the symptoms and even visit them at the
Ebola clinic.
The Ebola control team collected all those who had
been close to Ebola victims to monitor them in an Ebola
isolation center. The IFRC evaluation describes how suspected cases –children or adults – were whisked away to
health facilities, where they arrived potentially frightened
and disoriented, “taken out of the car and sprayed with
disinfectant and their possessions burnt in front of their
eyes” (p15) [19]. Luwero respondents noted that within
the emergency facilities, water and electricity were not
available at first, while another prominent issue was the
lack of food to sustain patients. According to a registered nurse working at the health center, local community members were generally not allowed to attend to
their kin inside this center other than a brief glance.
This inability to provide care was present not only in
terms of attendance, but also at communal level during
burial rites. During a focus group with community members, the experience of burials appears to have been the
most traumatic and visible violation of their community
identity, leading to several incidents, involving the local
Nubian community in particular: “They just dump them
like dogs and return running fast from the burial ground
like it is done for those who have committed suicide; that’s
the way they do it.” There were also problems with cases
which may not have been Ebola-related, but were also
de Vries et al. BMC Public Health (2016) 16:161
hurriedly dispatched. As the surviving brother noted,
these disrespectful practices were relatively unnecessary:
For us Muslims, we have a special cloth to wrap the
bodies in and the Christians use bark cloth. I think that
if they didn’t want us to touch the bodies they would
have asked us to buy these items so that our loved ones
are wrapped and buried with the respect and in the
clothes that we traditionally use for burial. They also
should not just dump them. I saw them personally
swing the body of a person and dump it on the vehicle.
According to our main medical informant, social
mobilization “made them appreciate the reasons as to
why we wanted the burial conducted that way.”
Claiming that the subsequent burials were then handled in the right fashion, the respondent also noted
in the same interview that the leaders within the
burial group were not Muslims, instead referring to
the affected, discordant group as “fanatics.” Overall
the community felt that they had been made irrelevant in the struggle against Ebola. It appeared that
one of the few places that had remained unaffected
by the Ebola crisis was the local church, where residents were still allowed to convene. Ironically, the
same spirituality that was heavily denied by authorities when it came in the form of amayembe, was
here allowed to provide spiritual guidance and care.
As a Kakute resident summarized it:
They told the people not to shake hands, not to
converge, and schools were even closed because they
did not want us to be in groups. But we used to go to
the churches and mosques. These were allowed. We
went there because God is the one who can deal with
any situation including Ebola. So there we had no
option but to seek God’s intervention.
Conclusions
To solve the first mile problem, public health managers
are quick to involve community health workers and
social mobilization teams, ideally equipping them with
smartphones to map the outbreak in real time. This
study shows that in a major Ebola outbreak control effort in central Uganda in 2012, these interventions
proved far from sufficient to assure collaboration from
the community. Instead, the “people-centered approach”
reaffirmed a historical mistrust between “scientific” biomedical and local explanations of illness and misfortune.
This theme goes back as far as Evans-Pritchard’s Witchcraft, Oracles and Magic among the Azande (1937) [24]
and is the subject of a truly immense body of anthropological literature. It illustrates the lack of credibility
(from an emic perspective) of biomedical explanations
Page 10 of 12
that ignore local understandings, combined with the relatively logical and empirical basis of local explanations.
While biomedicine offered no clear evidence of Ebola
as an infectious pathology, and no explanation as to
why this outbreak occurred suddenly in this particular
location and affected these particular individuals, the
emic explanatory model involving amayembe was easily
able to account for this by showing that the deaths had
occurred in only one family, and that they involved
people whom Ruth – who was accused of using the
amayembe to bewitch them – did not like. Moreover,
many people had had contact with the first patient,
Kabugo, during his initial illness and during his funeral,
but had not become infected. From an emic perspective, the evidence was clear.
While biomedical information appeared to be emitted
into the community in relatively arbitrary and discrete
bursts, these local interpretations were continuous and
based on a sort of collective and cumulative empiricism,
with local experiences, gossip and discussion feeding
into and supporting an increasingly clear picture of what
was “really” going on. People were proactive in collecting
evidence to support their suspicions, for example by
monitoring the woman who lived close to the Ebola
victims and interacted with them, to see whether she
also became infected.
The credibility of biomedical explanations was further
damaged by the lack of fit between the general information that was circulated and the local situation on the
ground. For example, the advice to avoid wild monkey
meat might have been based on campaigns in areas
where previous outbreaks occurred, and where this practice was common, but in an area where people did not
eat monkey (and where there aren’t even monkeys to
speak of ) it did not inspire confidence in the veracity of
the information. Similarly, the advice to use gloves and
goggles when dealing with Ebola victims was both
impractical (people have no access to these resources)
and socially and culturally unacceptable as a way of
caring for both sick and deceased relatives.
Although lack of funding, training and capacity appeared to have played a role, what characterizes this
case study is the shared experience of community
members that the DTF and its partners lacked openness and willingness to take the time needed to listen
to and empathize with community needs. After all,
what these community members were seeking first
and foremost were strategies to take care of their
fellow human beings and to diagnose and explain
within their own cultural framework. The resistance
to openness may be related to a pre-existing assumption that openness to other interpretations is the
same as “accepting” them, and would automatically
lead to a lack of control.
de Vries et al. BMC Public Health (2016) 16:161
We acknowledge that the amayembe paradigm is difficult to reconcile with the biomedical view. Yet, ideas
about amayembe do not necessarily exclude prompt
treatment-seeking, a finding corroborated elsewhere
[25]. Local practices and aetiology did motivate isolation
and social control of those who were most likely to be
carriers of the disease, because they were also, to an
extent, the ones suspected of using the amayembe.
Moreover, the interpretation of amayembe is not as
uniform and static as might appear at first sight. Rather,
we document a community discussion in which there is
room for interpretation, doubt, and different views
which may be held simultaneously. The existence of a
local medical system characterized by resilience and syncretism is an observation supported by well-established
anthropological facts [26]. It seems, therefore, counterproductive to deny this process.
Ironically, as the village and Luwero district became
increasingly stigmatized and isolated by the outside
world, the spread of amayembe from one family out into
the community and district became its own case of
social contagion that mimicked Ebola, but rested on
different actors and different explanatory frameworks.
While the outbreak in Luwero was ultimately controlled
by an authoritative stance, one might wonder if this was
helpful only in the short-term, as reemergence of the
disease may only reinforce a divide with long historical
roots. To be truly effective in bridging the first mile
outbreak control, we believe respect and engagement are
needed first and foremost, and despite remarkable
technological innovations including real-time community information systems, these interventions remain
contingent upon human interaction and openness to
cultural difference. To develop a more “people-centered”
early detection system, collaboration with the community must be at its core, and ideally the community
should be seen as a resource instead of a barrier. To
achieve this, the big missing element is knowing how to
respectfully “agree to disagree” while simultaneously
finding commonalities in humanity to facilitate collaboration during the first mile of outbreak control.
Given the mass of anthropological literature on traditional African aetiologies, and anthropological knowledge
on a previous Ebola outbreak in Northern Uganda [16], it
is surprising that so little serious effort was made to take
local sensibilities and culture into account. It beggars
belief, given this knowledge base and the extent of commonality in local aetiologies across sub-Saharan Africa,
that this was largely ignored in the early response to a
major epidemic in West Africa. Consequently, the “first
mile” problem is not only a question of using local resources for early detection, but also of making use, in public health outreach, of the contextual cultural knowledge
that has already been collected and is readily available.
Page 11 of 12
These observations underscore the crucial importance
of initiatives such as the Ebola Response Anthropology
Platform1 aimed at providing access to regional and international rapid-response anthropological experts who
could advise health authorities and governments as soon
as an outbreak is suspected. This could also apply to other
infectious diseases, because the underlying principles are
the same. Another large body of literature which is relevant for explaining the distrust of the formal health
system, and which also tends to be ignored when prevention campaigns do not work, is that which explores
rumours and local distrust of “outsiders” perceived to be
powerful and a potential threat to local interests. These
may be “foreign” medical researchers thought to be stealing local people’s blood under the cover of clinical trials,
or national health authorities secretly sterilizing women in
the guise of immunisation campaigns, or disinformation
campaigns deliberately intended to mislead people about
the “real” cause of a disease [27, 28].
Endnotes
1
http://www.ebola-anthropology.net/
Abbreviations
DTF: District task force; IFRC: red cross and red crescent; VHFs: viral
hemorrhagic fevers; VHT: village health team.
Competing interests
The authors declare that they have no competing interests.
Authors’ contributions
DDV analyzed the data and drafted the manuscript. JR, LM and TB carried
out fieldwork and provided input in the analysis. DM, MG and DKM
supported fieldwork and analysis. RP conceived the larger research project,
participated in its design and coordination, and helped to draft the
manuscript. All authors read and approved the final manuscript.
Acknowledgements
We acknowledge the people of Luwero who graciously provided their time
and input during the period of study. This study has been made possible
through a Global Health Policy and Health Systems Research grant by the
Dutch Scientific Organization (NWO) called “Developing Sustainable
Community Health Resources in Poor Settings in Uganda” (CoHeRe).
Author details
1
Department of Anthropology, University of Amsterdam, Amsterdam, The
Netherlands. 2Makerere University College of Humanities and Social Sciences,
CeSSRA office, Kampala, Uganda. 3Department of Social Work and Social
Administration, Makerere University, Kampala, Uganda. 4Center for Social
Science Research on AIDS (CeSSRA), School of Social Sciences, Makerere
University, Kampala, Uganda.
Received: 10 June 2015 Accepted: 10 February 2016
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