Barriers and Enablers to Treatment-Seeking Behavior and Causes of High-Risk Practices in Ebola: A Case Study From Sierra Leone

Abstract

Nine months after the start of the Ebola outbreak in Sierra Leone in May 2014, communities in Port Loko continued to engage in high-risk practices; many remained unwilling to seek treatment. In the face of such behaviors, Oxfam Community Outreach teams conducted qualitative research using in-depth interviews, focus groups, and questionnaires to better understand the barriers and enablers affecting treatment-seeking behavior. Analysis of their results highlights 3 primary barriers to treatment seeking: fear and limited information, concern about unknown outsiders, and the often prohibitive distance and limited accessibility of treatment. Communities were asked to provide suggestions on how to address these barriers. Their recommendations fell into 4 main categories: providing information and better communication, including community members in decisions, providing closer treatment facilities with opportunities to learn how they operate, and using survivors to inspire hope for other sufferers. This research highlights the need for social mobilization programs to invest early in understanding the underlying causes of risky behaviors in order to develop programs that address them.

The first case of Ebola in Port Loko, Sierra Leone, presented on June 10, 2014; the first district-level treatment center only became operational on December 1 (International Medical Corps, 2015). In a country with already poor health infrastructure (World Health Organization, 2015c), the communities in Port Loko had little immediate and locally available support. Although some communities set up their own task forces and implemented minimal coping strategies, they lacked the medical facilities and capacity to isolate and treat the sick, thereby leaving them unable to control the outbreak. As a result, study participants explained that in the early months of the outbreak, they witnessed loved ones forcibly taken from their homes, some in large groups by ambulances. Many were never heard from or found again—others were buried in mass graves against deep-rooted cultural practice and beliefs. This contributed to high levels of fear about the treatment system.

At the time of this study (January 2015), although more than six different actors were working under the National Ebola Response Centre’s Social Mobilization Pillar in Port Loko, high-risk practices—such as unsafe burials and hiding and treating the sick at home—continued to take place and remained the primary transmission route for cases in the district (World Health Organization, 2015b).¹ This study was developed to enable more effective approaches for Oxfam’s Community Outreach program and other Ebola social mobilization actors through improved understanding of the following:

• Community perspectives of Ebola interventions

• The root causes of ongoing high-risk behavior

• Key enablers of and inhibitors to treatment-seeking behavior

Methodology

Data were collected as part of Oxfam’s Community Outreach program across all 11 chiefdoms of Port Loko between February 11 and April 4, 2015. Data were collected from approximately 350 individuals, representing more than 200 different villages, through 20 semi-structured interviews with community members, 10 focus group discussions (FGD), 108 questionnaires and eight structured interviews with Community Health Volunteers (CHVs), as well as field observations (see Appendix A for a list of data collected). Data were collected by two national Oxfam Monitoring, Evaluation, Accountability, and Learning team members who spoke local dialects and had been trained in qualitative methods; one led the discussion and the other took notes. Data were translated, reviewed, and analyzed by the team weekly. The collection process was iterative; questions and discussions points were adapted to investigate emerging themes.

The research questions and techniques were designed to understand (a) treatment-seeking behavior, (b) perceptions of interventions, and (c) the impacts of interventions.

Data were first collected from one household in each of 20 different villages using in-depth interviews. After these were coded and analyzed, 10 FGDs were organized in which between six and 10 CHVs were selected from neighboring villages to participate. These FGDs were conducted using structured activities—guided sessions that involved drawing timelines and designing the ideal CHV. An additional seven FGDs were organized with people living in communities in which Community Care Centers (CCCs) had been constructed. A questionnaire (included in Appendix B) was sent to 108 CHVs to triangulate the findings from the interviews and FGDs. Following a final review and verification of data with Oxfam field staff, a participatory workshop with all 47 CHV supervisors and coordinators from all 11 chiefdoms in Port Loko was organized to triangulate the results and confirm the analysis.

Four key themes emerged in the data collected as having significant influence over treatment-seeking behavior and the avoidance of high-risk behaviors:

1. Widespread fear of the treatment system

2. The positive influence of community participation

3. Proximity to, and familiarity with, treatment centers

4. The role and presence of survivors

Limitations

As this is a case study from a specific time and location, any results and conclusions should be considered within this context. The data collected represent only certain community perspectives and cannot be said to indicate shared perceptions from across the country. As Port Loko experienced the second highest number of Ebola cases—and many communities faced peaks in the outbreak before any treatment centers had been set up—its communities may have experienced greater fear of seeking treatment than those in other parts of Sierra Leone. The significant distance to treatment centers for Port Loko communities may have been a hardship not faced by districts more affected later in the outbreak. In addition, at the time of data collection, many community members had not yet witnessed the improvements being made in the treatment system (e.g., the creation of a patient information hotline).

Results

Barriers to Treatment-Seeking Behavior and Causes of High-Risk Practices

Treatment-seeking behavior is defined for this article as any action taken by an individual or community once a person is believed to have contracted Ebola. This includes reporting this suspicion to a responsible person, calling the 117 hotline for an ambulance, or going for testing and treatment. The treatment system, for the purposes of this article, includes the 117 hotline, the ambulance service, CCCs, and Ebola Treatment Centers. High-risk practices include hiding the sick, providing unsafe home care, and conducting unsafe burials (Assessment Capabilities Project [ACAPS], 2016).²

The majority of household interviewees attested that everyone in their community would seek treatment and refer a sick patient and that no one engaged in high-risk practices. However, as stated in a number of agency reports and observed by Oxfam’s Community Outreach teams, high-risk behaviors were nevertheless taking place (Médecins Sans Frontières, 2015; World Health Organization, 2015a, 2015c). Households and CHVs gave the following explanations for the enduring reluctance to seek treatment and to reduce high-risk practices.

Fear and Limited Information

In March 2015, 1 year after the West African Ebola outbreak started—and 9 months following the first declared case in Sierra Leone—fear remained the most commonly reported barrier to seeking treatment among communities and CHVs. In the questionnaire completed by CHVs (see Appendix B), 77% of respondents (83/108) reported that fear—most commonly of ambulances and/or not knowing what happens inside treatment centers—was the reason for high-risk behaviors.³

Participants interviewed explained that everyone had been affected by Ebola because everyone had lost someone, which left everyone in the community scared. One female interviewee said, “Everyone has seen what Ebola has done in the community so I don’t hear people denying Ebola any more. The community is not safe … we keep hearing of new cases and so we live in total fear.”

The first mass media messages provided by the government, which stressed that “there is no cure for Ebola,” caused greater fear and left families and communities feeling hopeless and scared about treatment (World Health Organization, 2015c).⁴ Households explained that they did not understand what a treatment center could do, as they had heard that there was no cure: “They were telling us there was no cure. I was so scared, my mother and sister died, and I was just waiting for my turn. When my youngest sister got sick, I could not send her away to die” (female Ebola survivor, interview).

Burial Practices

Although people are afraid of dying, they are equally afraid of what might happen to their body after death. CHVs explained that in the early months of the outbreak, bodies were buried in mass graves at treatment centers or in villages: “They were just taking bodies and burying them, they did not follow our culture … men buried women, they were using black bags and no one was able to say prayers” (female CHV, interview). Another CHV said that “if someone is not given the proper burial, they do not die in peace, and they cannot rest” (interview). Many participants who had lost someone explained that they did not know where their loved one was buried; one female participant said, “My mom, they took her and I only knew she died when they came to quarantine me. To this date, I do not know where she is, I cannot rest, I feel so bad. She will not rest” (interview).

CHVs and some community members reported that things were improving: Burial teams had become gender specific and appropriately dressed, body bags were by then white instead of black, each person was being buried in his or her own grave, and prayers were accompanying burials. Despite this, some CHVs reported that not everyone’s attitude had changed: “[CHVs] know that burials are dignified now, and we try and tell people. Some believe us, but others, if they have only seen the bad way, they do not believe things have changed” (interview).

Outsiders and the Community

In the early months of the outbreak, CHVs organized themselves into task forces and established checkpoints to screen strangers (CHVs, interviews). Some said that when government support arrived, they felt sidelined because they were not consulted or involved in processes, and some were even scolded by representatives of government agencies for not doing enough to contain the outbreak. One female CHV reported it thusly:

We had no treatment centers and no support. When the ambulances did come, the sick were already dead. Then the government came in and they treated us like children who didn’t listen, but we did not have anything to protect ourselves. They made the District Ebola Response Coordination, forgot about our task forces, and only talked to the leaders. (Interview)

Interviewees reported that although communities were involved in Ebola interventions, specific roles for government health workers; traditional healers and herbalists; as well as Mammy Queens (female community leaders), imams, and priests were not identified by the organizations working in Port Loko.⁵ Rather, community consultations had been limited to working with village chiefs.

Although the intervention of strangers in the community is not particularly welcomed, especially when communities feel excluded, householders and CHVs rarely criticized their activities. One female participant said, “I do not like it when they come, but I hold my breath and allow them to check, because they are doing it for our safety” (interview).

Although the need for contact tracers and others to use personal protective equipment was generally accepted because of the nature of their work, people were scared when they came to collect the sick because the community did not know them and could not see their faces. This corresponds with other agencies’ experiences in outbreaks in Angola and Uganda (Raabe et al., 2010; Roddy et al., 2007).⁶ One female Ebola survivor told researchers, “I was frightened because we don’t know the people who came to collect her [my mother] … they were dressed in a scary way. We don’t see their faces … I cannot trust someone I cannot see” (interview).

Distance and Inaccessibility

Interview and FGD participants explained that the need to travel for 2 to 3 hours to another district for treatment during the early months of the outbreak increased the barriers to seeking treatment. Such distance added to the fear that important cultural practices might not be followed for burials if someone died far from home. One CHV team leader explained:

[N]o one could imagine going so far only to die. They don’t know what it’s like, but they know you go, the tests take days and you will die anyway, so they do not go. Everyone was being taken away to die in another town—the bodies would not come back. (Interview)

A number of FGD participants said that nearby treatment centers allowed patients to walk, thereby avoiding the use of ambulances, which were a major cause of fear, as previously discussed. As one woman said, “The ambulance has too much chlorine, as soon as they close the door, the chlorine stops you from breathing, it will kill you” (community member, interview).

The lack of nearby treatment centers resulted in limited knowledge in communities and therefore many rumors and myths of what took place inside of them.⁷ This corresponds with the findings of Kobayashi and colleagues’ (2015) five-country survey that half of their participants feared treatment units: “Some people, they heard about the incinerators,⁸ they said they were to burn people, they thought they used them to make people disappear.” The lack of familiarity and visibility of the centers made it hard to mitigate and address these fears and further inhibited treatment seeking.⁹

Reducing High-Risk Practices and Encouraging Treatment-Seeking Behavior

Household respondents stated that community-based activities, specifically house-to-house visits and community meetings, had helped save lives. In their questionnaire responses, 64% of CHVs (69/108) suggested that increased sensitization would be the best way to reduce high-risk behaviors. They defined sensitization as activities directly conducted within the community either door to door or as a group—they excluded radio programming. This was further echoed during interviews, in which many participants explained that those who were still practicing high-risk behavior required further sensitization. Although for many communities in Port Loko sensitization activities did not start until their villages were already heavily affected by Ebola, participants consistently reported that community-based sensitization activities reduced transmission and increased the likelihood of individuals surviving Ebola. For example, one female participant said:

I like sensitization because it helps us to save our own lives, only with sensitization we recognize the symptoms and then we will know what to do. Before we did not know what to do, we were just scared but did not know the cause or the treatment. But the information we receive … it helps us make the choice to call 117. (Interview)

Another said:

I believe some of these activities prevented me and some other people in the community from catching Ebola because we listened to what they told us not to do and to do … if you listen to the activities, they will save your life. (Interview)

Households and CHVs were asked by the researchers to provide their own recommendations to further reduce high-risk practices and increase treatment-seeking behavior. Their suggestions were as follows.

Information and Communication

Interview participants explained that being informed about Ebola and feeling supported by their communities strengthened their resolve and increased their confidence in seeking treatment. However, they explained that they would like to understand better what happens at all stages of the treatment process.¹⁰ In line with the causes of fear described earlier, participants reported wanting more knowledge about ambulances, treatment centers, opportunities for communication with patients, and what happens in the case of death.

During the CHV workshop, participants suggested that watching a film about what takes place inside treatment centers might reassure affected communities. They said that these could be shown in the villages or on smartphones. One CHV shared an example that he used to mitigate the rumors that entering an ambulance leads to instant death:

I promised [a patient] that, if we called the ambulance, I would get in first, to prove that he would not die from the ambulance. So we called and when it arrived, I got in first and I shut the door and waited. Then I came out and he agreed to go in and go for treatment. (Interview)

One respondent described that fear of chlorine could be reduced if people knew how it worked to kill Ebola; he suggested that CHVs could show the community how chlorine is made and that this would enable them to feel confident that it would not harm them.

Addressing Fear Through Community Engagement

Before the Family Hotline was set up in March 2015 to provide families with patient information, some CHVs said that their community had identified a “community liaison” who was responsible for chasing down information on community members who had been admitted for treatment in order to provide solace to the family and keep up morale. The use of village members was viewed positively by CHVs: Six out of eight said that they had a role as “confidence builders” (CHV interviews). Many CHVs had examples of how they had worked closely with their community to reduce fear around treatment seeking. For example, one male CHV said:

[A patient] was scared to go for treatment, so I promised to follow him. I was there, I sat when he went for tests, I came back and told his wife and then went back again, I never left him. Now they [the community] see I am working for them, I am their brother, they will listen to me, they will go for treatment because I will go with them. (Interview)

Although as previously addressed there is a lack of trust and fear of strangers who conduct contact tracing or house screening, participants said that when community members take part in these activities it can reduce some of the related fear. For example, “I know some of them, they are from our village, they come with the chief. We trust them because they come with people from our village, those who speak to me in my language” (female community member, interview). Another said, “People come and check for the sick in our homes. I am not scared because I know them, they are my brothers and uncles, they are with us” (female community member, interview).

Households and CHVs expressed their preference for being involved. For example, participants in several communities explained that they had set up a “neighborhood watch” that had not only helped them in preventing Ebola but also increased their confidence and sense of ownership of their own prevention activities.¹¹ For example, one female community member said, “The village has a ‘neighbor watch’ and everyone is watching to make sure no one is keeping a sick person or hosting a stranger. The community is supporting each other in this crisis to make sure it ends soon” (interview).

Participants explained that in some villages there were community members who had been trained in activities requiring personal protective equipment. Once an individual was trained, the chief held a meeting to inform the village that this person would accompany outsiders during such activities to reduce fear and gain trust.¹²

Proximity and Familiarity

Study participants explained that the availability and accessibility of treatment centers in Port Loko increased treatment-seeking behavior. CHVs and households said that they now knew where patients were being cared for, which reduced the rumors and myths about the centers: “Now the centers are close, we can see them and we know where our loved ones are. Now people should not be scared” (female community member, interview).

In communities in which CCCs had been constructed, participants reported high levels of confidence in treatment. Women explained that they could visit their family members at the center on foot and even hear their voices on the other side of the tent (female community members, interviews). Families interviewed also reported that having treatment centers close by meant that they could easily access patient information. Knowing the state of the patient and being able to pass him or her messages, even via a staff member, addressed some of the fear associated with the centers.

Building Hope Through Survivors

Study participants shared the idea that Ebola patients’ survival builds hope, which motivates others to seek treatment early. Householders and CHVs said that as they witnessed more people returning from centers—either having tested negative for Ebola or having survived—they felt increasingly confident to seek treatment early in hopes of surviving.¹³ As one woman said, “We see people who come out [of the treatment center] and they are still alive … and sometimes it’s just malaria, so now we are less scared. Now we see that people can live” (interview).

Survivors who were interviewed felt that they could bring hope to their villages and encourage people to go for treatment. One female survivor said, “I have confidence knowing that there are treatment centers in Port Loko, and that I myself survived and so others could too, if only we call 117” (interview).

CHVs explained that citing examples of people who had survived or tested negative for Ebola was a good way to encourage treatment-seeking behavior.¹⁴ One male CHV said:

I tell them about X [a patient], that he went as soon as he was showing symptoms and I supported him. Now he is home, his family is still alive, he survived and his family did too, because he went for treatment. Now he is alive, now he talks to others in the village and encourages them to go for treatment. He gives them confidence. (Interview)

Conclusions

In September 2014, Dr. Margaret Chan wrote:

Now, six months into the response to the outbreak, fear remains the most difficult barrier to overcome. Fear causes people who have had contact with infected persons to escape from the surveillance system, relatives to hide symptomatic family members or take them to traditional healers, and patients to flee treatment centres.

Six months after her statement, this study found that fear was still the primary reported inhibitor to treatment seeking, raising the question of how this fundamental issue can best be addressed.

In Port Loko, study participants identified fear of the treatment system; a lack of information about, and community engagement in, the response; and the distance to treatment centers as key barriers to treatment seeking and the reasons for continued high-risk practices.

Similar barriers were identified over the past decade in Uganda, the Democratic Republic of Congo and Angola, as well as other West African countries affected by this Ebola outbreak (Hewlett & Amola, 2003; Kobayashi et al., 2015; Roddy et al., 2007).¹⁵

Community outreach approaches must include early investment in understanding the underlying causes of behavior in order to develop programs that address such barriers. As de Vries and colleagues (2016) wrote, “Despite remarkable technological innovations, outbreak control remains contingent upon human interaction and openness to cultural difference.”

In Port Loko, study participants indicated that improving community engagement and participation and developing actions and providing the right information to address fears improved their willingness to seek treatment. Similarly, in a review of communication and social mobilization approaches, Chandler and colleagues (2015) argued that “engagement across communities with flexible protocols that communicate problems, request help in developing local solutions, and enable their implementation are likely to be more effective in changing high risk practices than standardised approaches.”

Study participants suggested, or had already developed, practical ways of helping their communities to overcome their fears. Examples include demystifying the nature and use of chlorine, setting up community task forces, demonstrating the function of ambulances and CCCs, providing forums to speak with survivors, and offering care and support to the families of the sick. Ensuring that families have access to both treatment centers in close proximity to their homes and information about the status of sick relatives appears critical to encouraging treatment-seeking behavior.

Similar results and recommendations were published by Médecins Sans Frontières and other organizations following Ebola outbreaks in previous years: Marais and colleagues (2016) recommended that communities be engaged with “cultural humility, through reciprocal learning and trust, multi-method communication, development of the joint protocol, to assessing progress and outcomes and building for sustainability.” They further provided examples of small changes, identified through this type of engagement, that can improve cultural sensitivity and increase the success of the Ebola response. In addition, corresponding with participants’ comments, positive survival stories (and survivors within communities) have been found across many countries to be an “asset in the fight against Ebola” (Abramowitz et al., 2015).

The study team provided agencies and nongovernmental organizations working in Port Loko with their preliminary findings; as a result, many of the suggestions from the study participants are being used to adjust ongoing Oxfam Community Outreach programs. For example, ambulance visits were organized in communities across the district, allowing community members to look inside the vehicles and openly talk about their functions in order to tackle myths and fears surrounding their use.

Research from Ebola outbreaks prior to 2014–2015 has presented similar conclusions, insisting on the key role that community engagement, cultural practices and beliefs, and trust play in the success of an Ebola intervention (de Vries et al., 2016). Given this, interventions must be developed to respond while simultaneously working together with communities to identify potential treatment-seeking barriers and community-identified ways to address these. Ensuring community participation has been acknowledged as a key strategy; however, ensuring this is given the same attention in the first phase of an outbreak is critical to its success. Hewlett, Epelboin, Hewlett, and Formenty (2005) reported that many of the deaths from the 2000–2001 outbreaks in Gabon and Congo were at least in part due to a lack of understanding of local history, perceptions, and practices.

Indeed, although this study mirrors conclusions drawn from research conducted over the past decade on Ebola interventions across Africa, there remains limited adoption of their recommendations in first-phase Ebola responses.

The World Health Organization’s technical guidelines for Ebola responses state that in conducting epidemiologic surveillance, “special attention must be given to the actual perception of the outbreak by the community. In particular, specific cultural elements and local beliefs must be taken into account to ensure proper messages, confidence, and close cooperation of the community” (World Health Organization, 1997).

If protocols exist and research continues to identify the same barriers and provide the same recommendations, it is discouraging that key actors are not using them to adapt programs accordingly from the onset of the crisis. The following questions therefore need to be answered:

• How can humanitarian actors set up interventions that give sufficient importance and attention to local communities, cultures, and contexts in the first phase of responses?

• What are the systemic changes that need to happen in order to create a space for community dialogue and understanding in first-phase responses?

• What actions are needed to ensure that this is not another piece of research that does not impact program design and implementation?

To do this, the recurring gap between research, findings, and the design of first-phase responses to Ebola outbreaks needs to be further explored and addressed by the humanitarian community responding to Ebola.

Funding

All authors are staff employed by Oxfam. This study was paid for as part of Oxfam International Ebola response programming. The authors declare no conflict of interest.

Additional information

Funding

All authors are staff employed by Oxfam. This study was paid for as part of Oxfam International Ebola response programming. The authors declare no conflict of interest.

Notes

¹ The World Health Organization (2015a, 2015b) reported as late as February 2015 that the high number of post mortem positive swabs indicated that people were still unwilling to seek treatment. In April 2015, Palo Conteh, the national Ebola response chief, said that traditional funeral practices involving contact with the dead remained the biggest driver of Ebola transmission (Mac Johnson, 2015).

² An ACAPS (2016) report found that “the association of Ebola with services deterred people from using them, including ambulances, hospitals and channels used to report suspected Ebola cases (for example calling 117 in Sierra Leone).”

³ More than 400 questionnaires were sent out to CHVs. These were analyzed as they came in, and we stopped collecting after 108 were returned and theoretical data saturation was thought to have been reached (Bryman, 2012; Gerson & Horowitz, 2002).

⁴ Médecins Sans Frontières (MSF) faced a similar problem during the 2005 Ebola outbreak in Angola. They reported that “by reinforcing fear and despair, ‘Information Education Communication’ activities at the start of the Marburg Hemorrhagic Fever intervention contributed to non-acceptance of the Marburg ward and security problems in the community” (Roddy et al., 2007). It was found that these approaches to social mobilization did not provide encouragement but rather further reduced treatment-seeking behavior.

⁵ The majority of work with traditional healers was focused on encouraging them not to practice rather than to take an active role. People in health services were working with survivors, and in April 2015 organizations in Port Loko were starting to work together with the District Ebola Response Coordination in order to identify the roles that traditional healers and other community stakeholders could have in Getting to Zero (UN Mission for Ebola Emergency Response, 2015). Getting to Zero is the campaign aimed to bring Ebola cases down to zero in West Africa (Centers for Disease Control and Prevention, 2015).

⁶ In the 2005 Angola outbreak, MSF faced similar challenges when entering houses in personal protective equipment to spray and chlorinate. They recognized that although spraying and isolation may have been the most epidemiologically effective approach, if it increased fear within the community, it would decrease trust and treatment-seeking behavior (Roddy et al., 2007). Similarly, Raabe et al.’s (2010)study of community perceptions of Ebola interventions in Uganda found that respondents did not like the use of protective gear that blocked a person’s identity. In order to address this, MSF had one member of the team remain outside the house in civilian clothing to work as a cultural interpreter, providing explanations.

⁷ As one female participant said, “Once you enter they give you a pill and it kills you” (interview). Similarly, a quote reported by Omidian, Tehoungue, and Monger (2014) read, “We were often told that in the [Ebola Treatment Unit], patients would disappear never to be seen again and their bodies would be thrown away.”

⁸ A study in Liberia also reported “growing fear held by local communities towards hospitals, [Ebola Treatment Units], and new policies concerning mandatory cremation, attention is turning towards the possibility of community-based care and management” (Abramowitz et al., 2015) .

⁹ Similarly, MSF found that proximity and familiarity were key barriers to treatment seeking in Uganda. They reported that communities were distressed at not being able to see their relatives hidden behind the opaque walls of the treatment centers and isolation wards (Raabe et al., 2010.)

¹⁰ Kinsman (2012) studied various Ebola outbreaks in Uganda and echoes the need for a continuous flow of information in multiple languages to build trust and reduce fear. Kinsman argues that this fear is the result of people being faced with a deadly unknown to which they may feel their only available response is to flee.

¹¹ Marais and colleagues (2016) reported in their study across a number of African countries that “community partners can help us learn of modest adjustments that would not compromise safety but could improve community understanding of, and responses to, disease control protocol, so that it better reflects their ‘community protocol’ (local customs, beliefs, knowledge and practices) and concerns.”

¹² On the basis of lessons learned from Ugandan Ebola outbreaks, Mbonye and colleagues (2014) recommended involving local community health workers and volunteers in active surveillance and contact tracing to ensure that all suspected cases are detected timely and removed from the community.

¹³ A study in Guinea (Carrión et al., 2016) found that survivors returning to a community who were hiding members from contact tracing helped to change attitudes by reducing fears of organ trading and death in treatment centers.

¹⁴ A 2015 study of Ebola in Liberia funded by the United States Agency for International Development found that survivors were playing a key role encouraging others to seek treatment: “They were considered credible sources of information about Ebola infection and leaders often involved them in educating the community and encouraged to share their stories” (United States Agency for International Development, 2015).

¹⁵ For example, Roddy and colleagues (2007) reported on behalf of MSF that “when fear and anger lead a community to refuse to collaborate, patients do not present to an FHF [filovirus hemorrhagic fever] ward for medical care and isolation, which defeats a crucial component of outbreak control.”

Appendix A: Data Collected

Table

Type of data	Total	Women	Men	Details on participants
Interviews with community members	20	13	7	4 survivors 17 living in Ebola-affected villages 3 living in unaffected villages
Interviews with CHVs	8	3	5	3 team leaders, 5 members
Focus groups with CHVs	10	54	61
Focus group communities with CCC	7	25	26	Community members (random selection) present on location CHVs around location
Questionnaires	108	31	77	All CHVs
Workshop with CHVs	47	11	36	Members, supervisors, and coordinators of CHCs
Total data	349	137	212

Note. Figures for focus groups are estimates, as participants arrived and left during the sessions. CHV = Community Health Volunteer; CCC = Community Care Center; CHC = Community Health Committee.

Appendix B: Questionnaire Sent to Community Health Volunteers

Objective of the questionnaire: to hear from CHCs about what has worked and what has not worked in building community trust and intent to refer patients for treatment.

Use of the questionnaire: No personal information is required, only the name of the section.

Confidentiality: Whatever is written in these questionnaires remains 100% confidential and will have no impact on your work, we aim to improve Ebola responses and so we seek your views as frontline workers in the response.

Problems with logistics and materials: We understand that transport, credit and visibility (T-shirts) are challenges. We have noted these already, and are looking for answers on the work we do and approaches used.

Chiefdom:

Section:

Village:

Ward

M/F

What do you do if someone may have Ebola? Can you list the steps?

What do you think makes people feel confident to tell someone they think they may have Ebola or someone in their family may have Ebola or feel confident to call the district hotline or 117 or tell the chief?

Why do you think that this has worked best? Or will work best?

If your community has sent people for Ebola treatment (CCC/ETU or other treatment facility), what helped or persuaded them to do this?

If people were not sent to hospital, what stopped them from sending them?

How do you get your community to listen to you and believe what you say about Ebola? How do you know if they have acted based on what you say/do in the community? How do you see this?

In your work as a CHC member trying to prevent the spread of Ebola, what was the thing you did that you think was the most helpful to your community? As a CHC what do you think was the most effective action you have taken for your community?

What has worked to make your community act against Ebola? Please list and explain why.

Have other people in your community been supporting you in persuading community members to protect themselves against Ebola?

How did they manage to do this?

What has been and maybe is still difficult being a CHC member in this Ebola response?

What was the most difficult challenge you faced in working with your community on preventing and stopping Ebola?

And why has this been difficult?

Why do some people not take action against Ebola?

What could or would change this?

Note. CHC = Community Health Committee; CCC = Community Care Center; ETU = Ebola Treatment Unit.