Ebola Virus Disease Sensitization: Community-Driven Efforts in Sierra Leone

Abstract

The 2014–2016 West Africa Ebola outbreak was the largest in history, resulting in approximately 11,000 deaths. Despite the outbreak’s eventual end, national and international health sensitization and containment efforts were subject to criticism. This study investigates disease-related knowledge and beliefs, as well as trusted sources of health information among EVD-survivors and their family members, highlighting the importance of community-informed public health responses. Participants (n = 134) were adults who were either EVD-infected, affected families/caregivers, or community leaders. In-depth interviews and focus groups explored EVD-related experiences, including health effects, stigma, and community relationships. Using a grounded theory and thematic content analysis approach, transcripts were coded for evidence of health sensitization, as well as compliance with mitigation measures and trusted sources of information. Participants displayed a high level of knowledge around EVD and reported compliance with mandated and personal prevention measures. Levels of health sensitization and subsequent reintegration of survivors were reported to be largely the products of community-based efforts, rather than the top-down, national public health response. Primary sources of trusted information included EVD survivors acting as peer educators; local leaders; and EVD sensitization by community health workers. This study highlights the importance of a community-based response for increasing the effectiveness of public health campaigns. Participants expressed that relying on the experiences of trusted cultural insiders led to a deeper understanding of Ebola compared to top-down public health campaigns, and helped infected and affected community members reintegrate. Future public health efforts should incorporate community-based participatory approaches to address infectious disease outbreaks.

Introduction

The 2013–2016 West African Ebola virus disease (EVD) outbreak was the largest in history, resulting in over 28,000 estimated infections and at least 11,000 deaths. Initial cases were reported in rural southeastern Guinea and spread throughout the region, with additional cases concentrated primarily in Liberia and Sierra Leone [1]. Sierra Leone, which ultimately experienced the largest number of cases, reported its first infection in May 2014 in the district of Kenema [2–4].

Despite the ultimate success of efforts to end the epidemic, public health officials faced a number of challenges in the design and implementation of their response. A delay in the initial recognition of the outbreak by international organizations has been cited as a failed opportunity to enact early containment measures, and stalled the arrival of aid money and medical teams [5–7]. The response was further complicated by contentious political situations in the districts, pre-existing supply shortages, and a lack of robust public health infrastructure stemming, at least partially, from prior under-investment [4, 8].

In the decade leading up to the EVD outbreak, governmental spending on healthcare infrastructure was low. The majority of funding came from external donors and was directed towards HIV and tuberculosis interventions, rather than towards workforce training or investment in physical infrastructure [7]. In the early days of the EVD outbreak, this dynamic manifested in shortages in both staff and personal protective equipment (PPE) and, in many areas, healthcare workers who were not trained in infection prevention and control [9, 10]. Additional large scale logistical challenges resulted in shortages of food and supplies for communities in quarantine and extensive burial backlogs [9, 11].

Health Sensitization Efforts: Community-Driven vs. Top-Down

Public health infrastructure and resource shortages were not the only challenges to response efforts. Similar to what has been observed during the COVID-19 pandemic, the novelty of this outbreak presented a steep learning curve in terms of effective health messaging and in engaging communities to mitigate the spread of infection – what we will characterize as health sensitization efforts. Early community sensitization centered largely around the simple message that “Ebola is Real” and deadly [12], a message that was subject to public skepticism given historical distrust of the government and the healthcare institutions associated with it [7]. This heavy emphasis on EVD’s deadliness and the necessity of community surveillance, compounded by existing mistrust of healthcare providers, created fear within communities, particularly early in the outbreak [8, 13, 14]. Community members often expressed the belief that if they were taken to a treatment facility they would never return or would be purposely infected with Ebola, leading to delays in seeking care at medical centers in favor of local healers, as well as attempts to hide from detection [8, 13, 15].

Furthermore, early messaging from public health officials relied largely on one-way dissemination of information to the public rather than building reciprocal channels of communication with communities that may have resulted in more locally-responsive and acceptable policies and practices [7]. Policies that banned traditional burials, for example, led community members to conduct secret burials, a practice which ultimately became a primary point of continued disease transmission [16]. Even messaging to healthcare workers faced communication challenges. Health workers reported that the “no touch” policy in which they were trained by WHO and UNICEF was confusing and, in some cases, made treatment more difficult, leading to diminished trust between providers and patients, and to some health workers discontinuing to provide care altogether [8, 17].

Community activists sought to emphasize the necessity of sensitization models rooted in community-based responses [8, 12]. In time, the government began to incorporate these community-driven responses into the broader national strategy, including relying on local resources such as traditional healers and community leaders to combat fear and mistrust in order to stop the spread of EVD [14, 18]. This reliance on cultural insiders to understand community perceptions proved to be a successful strategy. Chiefs and local leaders were well-positioned to advocate both “up” to inform state policies, and “down” to relay the importance of mitigation practices to their communities [7]. These leaders helped their communities implement contact tracing and education on EVD symptoms and preventative measures [14]. Local leaders were able to advocate to the government to shape policies around safe burials and cremation to accommodate needed public health measures as well as community members’ desires to have physical gravesites for loved ones, practices which significantly curbed transmission [7, 19].

EVD survivors also played a key role in the sensitization of community members [8, 15]. Local journalists began to work together through collaborations with radio stations to bring survivors onto their shows, along with outbreak experts and trusted local leaders, to share their experiences of treatment centers and to dispel misinformation [15]. Community health workers were tasked with Ebola sensitization and contact tracing, and tended to develop greater trust with community members than did facility-based health workers. They assisted in demystifying treatment centers by arranging observations of patient care, and recruited survivors to teach and advocate in their communities [8]. Over time, more people reported prevention use and seeking services from community health workers as they saw people being successfully treated and returning home.

EVD Knowledge and Beliefs

Sierra Leone was declared Ebola-free in March of 2016 [18]. However, in the wake of subsequent EVD outbreaks, as well as the emergence of novel epidemics, it is critical to understand the influence of sensitization efforts - not only gauged by the ultimate ending of the epidemic, but by our resulting preparedness for effectively disseminating disease information when faced with new and evolving public health crises. Previous studies in Sierra Leone found that general awareness and belief in EVD was high [13, 21]. In a qualitative study conducted in the midst of the Ebola outbreak, of thirty men and women living in Ebola-affected areas almost all reported that at the beginning of the epidemic they did not believe that Ebola was real. Some attributed the deaths to common diseases such as cholera, while others suspected the government was to blame. However, a year into the outbreak nearly all 30 respondents reported that they came to believe that Ebola was real because they observed or knew of people who died [13]. Similarly, a national survey conducted later in the outbreak found that awareness of Ebola was high: 97% of respondents reported that Ebola was real and that an outbreak was occurring in the country [21].

Results on transmission knowledge and prevention utilization, on the other hand, were mixed. In studies targeting transmission knowledge, many participants believed that Ebola could be transmitted via mosquito bite or that the virus was airborne [20–22]. In one study, nearly half reported that they did not know or understand the laboratory test for EVD detection. Some thought the test occurred only after someone died, and others distrusted the validity of results. Many did not understand the need for continued re-testing [13].

Additional misconceptions have been identified around prevention methods. In a study conducted in the midst of the outbreak, participants reported using chlorine to wash their hands, but did not know that this was the same product being sprayed in their homes and many believed spraying chlorine was harmful or contributing to deaths [13]. In another, people held erroneous beliefs about EVD prevention methods, including using salt water to sanitize [22]. In focus groups conducted near the end of the outbreak, participants discussed the discrepancies between people’s knowledge of safe prevention practices and their continued practices of washing, dressing, and burying the dead in traditional ways [23]. A survey of hospital staff, for example, found that approximately 80% of participants discontinued recommended hand washing practices post-EVD [24]. These findings are further complicated by a lack of consistent access to reliable water and sanitation infrastructure [25].

Overall, findings indicate that EVD sensitization efforts were not wholly successful in generating nuanced knowledge of the disease or in establishing long-term practices to avoid or mitigate future outbreaks. Compared to the widespread coverage of the national and international responses, relatively less is known about the effectiveness of local sources of sensitization. The purpose of this study is to conduct a qualitative examination of EVD-related knowledge and trusted sources of information among previously infected individuals, their affected family members, and community leaders in Sierra Leone. The study is guided by the following research questions: (1) What was the level of knowledge in our sample about Ebola symptoms, transmission and treatment in our sample and how did that knowledge change over time? (2) How did our sample participate in EVD mitigation measures during the outbreak? and (3) Who were considered trusted sources of EVD-related information in the community during the outbreak?

Methods

Participants

Purposive maximum variation sampling was employed to recruit participants for the current study. This non-probability sampling technique was used to target individuals who could offer experiential perspectives on EVD [26]. Our sampling frame consisted of three categories: those who had been infected with EVD; affected family members or caregivers; and community leaders. Affected individuals are those who were not themselves infected with EVD, but shared a household with someone who was. Infected and affected participants were recruited from a comprehensive list of EVD survivors and family members provided by the Sierra Leone Association of Ebola Survivors (SLAES), a key study partner. SLAES community liaisons also collaborated with local partners to identify community leaders for participation. Community leaders included religious leaders (n = 4), village chiefs (n = 3), traditional healers (n = 3), nurses (n = 3), school teachers (n = 3), youth leaders (n = 3), police officers (n = 3), councilors (n = 2), Sowei (Female initiation leader; n = 1), and a representative of the traders’ union (n = 1). Approximately 52% were male and 48% were female.

Qualitative data collection consisted of key informant interviews (KIIs) and focus group discussions (FDGs). Participants for KIIs (n = 11) were chosen from five districts: Western Area Urban, Western Area Rural, Kenema, Kailahun, and Port Loko. FGDs (n = 15) were conducted in Kenema, Western Urban, and Port Loko. These districts were selected based on their high rates of EVD, the geographic spread of the districts across the country, and the diverse representation of traditional ethnic groups and political affiliations. The final sample consisted of 134 participants, composed of EVD-infected (43%) and -affected (36%) individuals, as well as community leaders (21%). The sample was approximately 49% male and 51% female and participants were 36 years old on average (see Table 1).

Table 1.

Participant characteristics

	Key-Informant (n = 42)	Focus Group (n = 187)
Age – M (SD)	36.1 (9.72)	53.5 (12.66)
Gender – n (%)
Male	6 (54.5%)	60 (49.2%)
Female	5 (45.5%)	62 (50.8%)
Status – n (%)
Infected	11 (100.0%)	47 (38.2%)
Affected	N/A	48 (39.1%)
Leaders/Elders	N/A	28 (22.7%)
District – n (%)
Kenema	2 (18.2%)	41 (33.3%)
Kailahun	3 (27.3%)	N/A
Port Loko	2 (18.2%)	47 (38.2%)
Western Urban	1 (9.0%)	35 (28.5%)
Western Rural	3 (27.3%)	N/A

Procedures

Qualitative data collection took place over five weeks from June to July of 2019, facilitated across all five districts by Caritas Freetown staff with SLAES community liaisons. All data were collected by local Sierra Leoneans with previous research assistant experience. Prior to entering the field, RAs were trained in interview techniques and group facilitation skills, as well as protocols on risk of harm and other appropriate safeguarding measures.

SLAES community liaisons and a trained social worker were present at all data collection sites in the event any participant experienced acute emotional distress. In such an event, the social worker, distressed participant, and project manager worked together to determine best steps forward in pursuing a mental health referral for a local service provider. In the event that a participant disclosed ongoing health issues to project staff during the data collection process, health referrals to medical professionals were facilitated using the same process.

KIIs were conducted one-on-one and FDGs were composed of up to 10 participants each. Each group represented a single participant type: EVD-affected parents/caregivers, EVD-infected parents/caregivers, or community leaders. Both KIIs and FDGs explored participant experiences with EVD within their communities, including sensitization and prevention efforts at the individual, community, and governmental levels. Other questions targeted topics included health effects, EVD stigma in the community, loss, and economic pressures, as well as how these stressors affected family and community functioning.

All interviews were conducted in Sierra Leonean Krio, Mende, or Temne, audio-recorded and transcribed into Krio with identifying information removed, and then back translated into English. Transcriptions were reviewed by the project manager and research assistants for accuracy. Participants were paid approximately USD $5.00 in Leones for their participation, based on the average daily income in Sierra Leone. Transportation costs were reimbursed for all participants, and refreshments were provided on site.

Prior to data collection, all RAs were trained in appropriate consent procedures. Given community literacy rates, all consent forms were read to participants in their preferred language. They then provided both oral consent, and a written “X” or signature was collected electronically in REDCap. Paper copies were offered to all participants. Ethical approval for this study was granted by the Boston College Institutional Review Board, as well as the IRB of the Sierra Leone Ethics and Scientific Review Committee (SLESRC) of the Government of Sierra Leone’s Ministry of Health and Sanitation.

Data Analysis

We utilized a multi-step strategy derived from grounded theory and thematic content analysis for our qualitative data analysis [27, 28]. This inductive approach was selected to identify patterns and themes rather than a deductive method driven by a specific theoretical framework in order to more authentically represent the experiences of our participants. Researchers from Boston College and our partner organizations in Sierra Leone open coded interview transcripts to establish a comprehensive set of preliminary codes. Once a saturation point had been met, a team of five researchers from Boston College conducted axial coding to develop and refine thematic structures with a focus on material related to our key topics for the purposes of this paper, such as “knowledge of transmission” and “source of Ebola sensitization.” Once the codebook was finalized, the team of researchers collaboratively coded all remaining transcripts using NVivo.

Results

EVD-Related Knowledge

Overall knowledge of EVD symptoms and treatment in our sample was high. Having experienced EVD themselves, or having a close relationship with an infected individual, our participants were able to provide detailed descriptions of symptoms throughout the course of illness. One woman, an EVD survivor, described her onset of symptoms after her husband died from EVD:

“I was told about the symptoms of Ebola, how it infects people. That the person will start to experience headaches, red eyes, body temperature will go up and weaken feet unable to walk. When my husband died, after two days I started feeling sickness in my whole body and I said oh! let me go for a test with my children.”

One man described his EVD symptoms after his mother and some of his children died:

“At midnight I left the town and went directly to Connaught hospital to report myself that I have been infected with Ebola, because I was having frequent stooling, I was vomiting…I went to report myself, because I didn’t want to transfer it to my other children.”

There were occasions, particularly early on, when participants described misdiagnosis, given the similarities between initial EVD symptoms and those of other endemic diseases such as malaria. One man in Kailahun who had been infected described this experience:

“I was drenched in rain one Thursday as I was traveling from my village. On the Friday, I started to feel feverish. I thought that it might be from the rain that I was feeling sick, for it is a normal thing for me to fall sick anytime that I am drenched in the rain. As a health worker by occupation, I went to be tested for malaria.”

Several participants also highlighted misunderstandings in the community around the physical sequelae displayed by survivors. These lingering physical conditions, such as vision problems, were considered by some to be evidence that the individual was still symptomatic and that contact with them could lead to infection. A community leader speaking about this issue said:

“Anybody that had Ebola, you can see the signs and symptoms on them that this person has been infected before. So you see they were thinking that those signs like headaches and eye problems meant the virus is still in them, and if we touched those people the virus would transfer to us.”

Our participants also had a strong knowledge of contact transmission and, in many cases, were able to trace the chain of transmission that led to their own infection or that of their loved ones. For example, one survivor described her own suspected point of transmission:

“I got Ebola through my sister. She was sick with Ebola so I went to her place, then I touched her and when I returned home I started feeling my head and fever.”

EVD Mitigation Measures

Participation in EVD mitigation measures was also high in our sample. Quarantine, avoiding physical contact with infected and their household members was extremely common, as well as avoidance of items used by infected/affected, such as dishes. In many cases, however, particularly earlier in the outbreak, these preventative measures evolved into the stigmatization of infected and affected participants, with infected individuals being most severely impacted. One man in Port Loko who had been infected with EVD discussed his return home from the Ebola Treatment Unit and the rejection he faced:

“When I came out of the center and I told her that I didn’t have the sickness anymore, she didn’t believe. So that is why she left me, the woman I was with.”

Several participants also discussed increased decontamination measures following sensitization. One woman, a caregiver whose children has been infected by EVD, explained:

“Now that the Ebola is over they came to sensitize us, that anytime you come from the toilet you must wash your hands with soap, your spoons you should wash them, you must wash anything you want to use that concerns your life. Also to clean our environment because the virus is just like a fly and it comes with the sick. Clean your toilet and your surroundings, so that the sensitization we were given when the Ebola had just ended.”

One area where participants reported more difficulties with prevention measures was in safe burials. This issue was not frequently discussed in our interviews or focus groups, but when it was, there was a reluctance to report EVD-related deaths for safe burial because of the manner of burial conducted by the teams, including the cremation of bodies. This finding has been highlighted in previous studies [7, 16] and contributed to the government’s adaptation from safe burials to “safe and dignified” burials. A woman who lost most of her family to EVD reported:

“It was the way that they were taking care of people that died during Ebola that was more stressful for me. They will not bury you the right way whether you are a Christian or Muslim. They would just throw you just like that…they were putting four to five dead bodies in one grave and covering it. That was the most stressful thing for me.”

Information Sources: Trust and Distrust.

Despite high levels of disease-related knowledge and prevention utilization, our participants also reported exposure to misinformation and feelings of distrust, particularly towards healthcare providers. This distrust appeared to peak earlier in the outbreak and lessen over time as community experience with EVD and healthcare facilities increased. One man in Kenema who had been infected with EVD, said:

“When we went to a big meeting somebody in that meeting said those of us who were infected with this virus, our life span of existence is ten years. In ten years time we will not be on this earth…what made many people strongly believe in the statement, is because the person that said it was medical personnel.”

Initial distrust included the use of the 117 Emergency Hotline and of community members who were advocating for the utilization of healthcare services. One man in Freetown who had been infected said of people in his community:

“They helped me in one way by calling 117, but I thought that they were doing bad to me, by calling 117 for me. Anybody that calls 117 for you during that period will be considered your enemy. But later when I was in the hospital, I realized that they were not doing bad to me.”

This distrust extended to the Ebola Treatment Units (ETUs); respondents not only doubted the treatments provided through ETUs, but also reported beliefs that healthcare officials were delivering harmful treatments to people with EVD. One survivor in Western Rural reported refuting these beliefs among his peers:

“I give advice to some of my friends… when you get infected with the virus do not hide it, thinking that there is no medicine in the treatment centre, or when you go there they will kill you. They’re not going to kill you. They treat you according to your sickness. When you take the medicines you would feel better, and also you should eat well to take the medicine. They will encourage you because they knew that your family is not with you.”

Given the high levels of disease-related knowledge in our sample, we also hoped to identify the sources of information whom participants considered trustworthy. The most commonly reported sources of sensitization in our sample were the survivors themselves. Survivors reported educating others in the community. One man in Freetown who survived EVD explained:

“I am always telling my friends that before my experience, if you would talk to me about the hospital I would become afraid thinking that once you go to the hospital they will kill you. But as you get infected and you notice that you have got the symptoms, run to the hospital. It will be good for you. So that’s how I talk to my family members and even my community members. When you get infected the first thing you can do is take precautions and go to the hospital and let them diagnose you.”

Participants also reported taking part in more formal advocacy efforts to sensitize communities and confront the continued stigmatization of survivors. One man, who had been infected with EVD, said:

“We called the doctors. We went to Sierra Leone broadcasting corporation radio (S.L.B.C. radio), we talked over the air and we called the chairman and he said the provocation must stop now.”

Elders and other community leaders were also cited as common and trusted sources of sensitization. In a focus group, one chief described how religious leaders often took on this role:

“The message went through the counselor to the headmen, from the headmen to the Imams, Imams to the Pastor, Pastor’s preach it in the churches, the Imam’s preach it in the mosque that those people are our families. Let nobody point fingers at them because of the stigma.”

In the same focus group, a teacher discussed their own role in sensitizing the children:

“I told my boss who is the principal of the school to announce in the assembly that those children who survived are human beings like us. We are living the same life. They are important like us and we are all the same. And the children were having the perception that if you eat together with survivors you also will be infected…so the children also started coming close to them and playing with them. That was the role I played as a teacher to drive the stigma from the children who survived.”

Despite their initial distrust, over time community healthcare providers also became a trusted resource during the outbreak. A community health worker also described their own sensitization efforts:

“Since I have some medical experience I was telling them about some preventive measures. They started coming closer to me, asking me about how the center was and I explained it to them. Then when the sickness began to lessen they themselves believed that indeed if you are sick and go to the hospital for early treatment you will recover.”

Discussion

EVD-infected, -affected, and community leader participants in this study displayed a high level of knowledge regarding the transmission and symptomatology of EVD, largely attributable to personal experience with the disease, either in their own households or in their communities. They reported compliance with mandated containment measures, such as quarantine, as well as changes in personal prevention behaviors, namely increased hand washing and sanitation measures.

Our findings underscore earlier reports that original safe burial guidance, which banned traditional burials and employed burial teams, led to community dissatisfaction [16] and fears of stigma when utilizing those teams for an EVD-related death [23]. These findings are consistent with other research from the region which observed that at the height of the EVD epidemic, perceived infection risk predicted higher levels of stigmatization. Over time, stigma toward EVD survivors was observed to decrease, with factors such as being female predicting a slower rate of change.

The present study noted other positive changes over the course of the epidemic. As community voices were incorporated into the public health response and burials became more locally-informed, willingness to utilize available resources and alter burial practices were seen as more acceptable solutions. Ultimately the Ministry of Health and Sanitation trained burial teams in “safe and dignified” burials, of which more than 16,000 were conducted from October 2014 to November 2015 [29]. Likewise, misinformation and mistrust of healthcare providers was reported, particularly early in the outbreak, but abated following higher rates of community exposure and altered public health messaging.

Of particular interest to public health campaigns is understanding sources of trusted information during disease outbreaks. In Sierra Leone, there was a robust national and international response to EVD [4, 30, 31], yet these sources of health sensitization were not frequently reported by our participants. Beyond personal experience with the disease, there were three main sources of information commonly cited: survivors, community leaders, and community health workers. These findings suggest that the current level of EVD health sensitization among community members is largely a product of community-based efforts among trusted cultural insiders, rather than solely from the national public health response. Community engagement is therefore a critical part of health sensitization efforts and should be incorporated into top-down efforts to address infectious disease outbreaks.

Limitations

It is a strength of this study that we have been provided with in-depth, first-hand accounts from participants who were themselves infected or had EVD-infected family members. However, when considering the generalizability of our results to the larger population, we must consider that the level of health sensitization seen here may be inflated compared with those who were not directly affected by EVD. Additional research is needed to understand health sensitization trends among non-infected or -affected individuals. Furthermore, the reliability of participant recollections may be affected by the length of time between the end of the epidemic in 2016 and data collection in 2019.

Finally, additional contextual influences should be taken into consideration when assessing participation in mitigation efforts. As previously mentioned, many individuals in this context experience limited access to preventative materials, such as soap and clean water [25]. Mental health has also been identified as playing a role in preventative behaviors. Data from a representative survey of N = 1,008 adults in the Western Urban and Western Rural districts of Sierra Leone at the height of the epidemic found that PTSD symptoms were associated with lower levels of EVD prevention behavior while EVD risk behaviors were associated with factors such as depression and higher levels of war exposures. Despite evidence that mental health and trauma history shape EVD risk and protective behaviors, very little attention was given to such psychosocial dynamics in the formal EVD response [32]. Developing a more holistic understanding of the factors that facilitate engagement in disease response efforts will strengthen subsequent public health campaigns.

Conclusion

The 2013–2016 EVD epidemic involved a complex public health response that experienced multiple iterations, with a myriad of stakeholders from international organizations down to local leaders and community members. The barriers to effective response that arose were logistical, social, and cultural, and the delays that were observed during EVD were, in part, due to the top-down nature of the official public health response that provided guidance to communities rather than leveraging local expertise [7], a method that may be particularly ineffective in a context where trust in government is already low [33]. The social and cultural considerations incorporated into the national response were typically reactive to public backlash or low compliance rather than considered integral to a comprehensive public health response. For example, “safe burials” shifted to “safe and dignified burials” because families were secretly burying their loved ones, a practice that became a primary mode of ongoing EVD transmission but also highlighted the importance of community engagement [7, 34].

The results of this study suggest that future public health campaigns should be developed collaboratively between governmental actors and community leaders, and informed by cultural values and practices. This type of community engagement includes information sharing and transparency, seeking community advice, co-identifying problems and potential solutions, and empowering communities to lead effective responses [14]. In order to respond quickly and effectively to future epidemics, governments must form, maintain, and prioritize community relationships to build resilient and responsive healthcare systems.

Data Availability

Data cannot be shared publicly because of ethical restrictions according to IRB-approved protocols, and the risk of deductive disclosure of participant identities. Researchers who meet the criteria for access to confidential data may contact the Institutional Review Board at Boston College at irb@bc.edu.