Treatment Seeking and Ebola Community Care Centers in Sierra Leone: A Qualitative Study

Abstract

Ebola Treatment Units were able to provide only 60% of necessary treatment beds in Sierra Leone. As a result, the Government of Sierra Leone decided to construct Community Care Centers. These were intended to increase treatment-seeking behavior and reduce the community-level spread of Ebola by facilitating access to care closer to communities. Through qualitative data collection in 3 districts, this study seeks to understand the perceived impact that proximity to such Centers had on treatment-seeking behavior. Feedback from community members and Community Health Volunteers indicates that proximity to treatment reduced fears, especially those arising from the use of ambulances, lack of familiarity with medical Centers, and loss of contact with family members taken for treatment. Participants report that having a Center close to their home enables them to walk to treatment and witness survivors being discharged. Living close to Centers also enables communities to be involved in their design and daily operation, helping to build trust in them as acceptable treatment facilities. Further research is required to understand the appropriate design, operation, and epidemiological impact of Centers. Further investigation should incorporate the effect of an outbreak’s severity and the stage (duration) of the outbreak on potential acceptance of Centers.

Background

Study Objective

In November 2014, as the Ebola virus disease (EVD) outbreak neared its peak in Sierra Leone, Ebola Treatment Units (ETUs) were able to provide only 60% of the necessary treatment capacity (Government of Sierra Leone, 2014). As a result, the government decided to construct Community Care Centers (CCCs) with support from the UK Department for International Development and other international partners. CCCs, although controversial,¹ were intended for construction within affected communities in an attempt to improve treatment-seeking behavior and reduce the spread of the disease by bringing treatment facilities closer to communities (Michaels-Strasser et al., 2015).

Oxfam responded to EVD by supporting quarantined households and community outreach activities and providing water and sanitation facilities to affected communities. In November 2014, Oxfam was asked by medical agencies to support CCCs with Water, Sanitation and Hygiene (WaSH) facilities. Despite the large-scale international response, the outbreak in Sierra Leone continued, and Oxfam’s community outreach teams continued to find that many Ebola-affected households were not seeking treatment.

To better understand the barriers communities faced in seeking treatment, Oxfam added additional qualitative data collection to its existing monitoring, evaluation, accountability, and learning (MEAL) plan. Through this, Oxfam sought to better understand the barriers to and enablers of treatment-seeking behavior and to improve community outreach approaches. The initial interviews and focus group discussions (FGDs) indicated that proximity to CCCs influenced treatment-seeking behavior. This led to further investigation to better understand community perceptions of the role proximity to treatment had in treatment-seeking behavior within this context.

CCC Rationale and Models

In November 2014, limited access to local care provision was perceived to have an impact on treatment seeking and referral (Gulland, 2014). CCCs were piloted to address this gap. According to the World Health Organization (WHO), the CCCs, also referred to as Ebola Care Units, were designed to provide extra capacity to isolate and test suspected cases of EVD closer to people’s homes and engage communities themselves in the fight against the disease. Infection prevention and control standards would be assured in a controlled environment, and personal protective equipment would be available to protect staff working at these facilities from Ebola-symptomatic patients (WHO, 2014b).

As ICAP (2015) stated, “The goal is for CCCs to enable the rapid isolation of EVD cases, reducing household transmission and limiting epidemic spread.” . UNICEF officials explained that CCCs were conceived as a form of “risk management,” allowing the isolation of patients in places thought to be safer than their homes (Oosterhoff, Wilkinson, & Yei-Mokuwa, 2015). In addition to admitting patients, they were to be focal points for community-based disease control, through case finding and social mobilization and treatment provision (Davies, 2015). Another purpose of the CCCs, as one key informant from the Oosterhoff and colleagues (2015) study said, was “to re-establish the Primary Health Units (PHUs), by taking the Ebola patients away from them.”

CCCs were intended to hold only around six to 15 patients for a maximum of 3 days. If EVD test results proved positive, patients would then be transferred to an ETU. In the event of a negative test, CCC staff were able to prescribe basic medication, such as malaria treatment or oral rehydration, when required (WHO, 2014a).

A formative evaluation conducted by the Ebola Response Anthropology Platform found divergent opinions on the role and function of CCCs across districts, broadly reflecting the varying availability of other EVD facilities (Oosterhoff et al., 2015). For example, in Port Loko district, the first CCCs opened when transmission rates were very high and when there were no district-level facilities capable of isolating and caring for EVD patients. As a result, CCCs (e.g., in Port Loko operated by Plan International) provided a variety of treatments, from rehydration therapy to antipyretics, thereby operating more as mini-ETUs. Plan International (2014) reported that when needed, antibiotics were administered by a qualified doctor and that patients received three meals a day, a comfortable bed, a toilet, and psychological support. As explained in the ICAP assessment at the time:

The definition of a CCC and the nomenclature for “non-ETU” models of care [was] rapidly evolving. Although CCCs were originally envisioned as sites staffed only by lay community caregivers, trained health workers … were present at all 11 sites visited … partners had diverse approaches to CCC design and management. (Oosterhoff et al., 2015)

Given the varying nature of CCCs, for the purpose of this study, the term Center is used to encompass all aforementioned types of CCCs. Because of the differing standards and designs of Centers across the country and varying over time, considering the appropriateness and epidemiological impact of their placement and structures is beyond the scope of this study. Rather, this study seeks only to improve understanding of the relationship between the proximity of a Center and treatment-seeking behavior.

Methodology

Qualitative data were first collected in January 2015 on barriers to and enablers of treatment-seeking behavior in order to benefit Oxfam’s community outreach programs. As proximity to Centers was a recurring theme in these discussions, we sought additional understanding on how proximity may influence treatment seeking.

Data were collected between February and June 2015 from Ebola-affected communities in the Port Loko, Koingadugu, and Freetown districts of Sierra Leone, where Oxfam was conducting WaSH and community outreach programs.²

The researchers used purposive sampling, specifically targeting affected communities, as these communities were the key stakeholders in the response. Following the first round of data analysis, proximity to care was a recurrent theme influencing treatment seeking. Through an iterative process, additional data were collected from Center staff, Community Health Volunteers (CHVs), community members living near Centers, and the neighbors of Ebola-affected households. In total, 35 interviews were conducted, 108 questionnaires were completed, and 21 FGDs were held. The communities included in the study were in various contexts in relation to Centers.

All data were collected by trained Oxfam MEAL team members who were able to speak relevant local dialects. Interviews and FGDs were conducted by two MEAL team members: One led the interview or FGD while the other took detailed notes or transcription. The data were translated into English and shared with the first author (S.E. Carter), who then provided feedback to improve subsequent sessions to improve the way either the questions were being asked or the data were being documented. Interview and FGD leaders were then adjusted, with coaching continuing to address any challenges faced during data collection.

The results were then shared and presented to field staff (WaSH teams) for their feedback and interpretation. These staff were given the opportunity to confirm or question the results of the study to ensure that it was perceived accurately by those who worked within affected communities on a daily basis.

Limitations

The data collected reflect community perspectives from three districts heavily affected by Ebola, and the study was conducted more than 6 months after the outbreak started in Sierra Leone. As a result, they may not represent the views of communities living in other districts or those less impacted by the outbreak. Some respondents admitted that they came to accept Centers only after witnessing the devastating impact of Ebola in their communities for some months. Therefore, it is not possible for the results of this study to be considered a first reaction to Centers.

The construction, design, and treatment options available across Centers varied between locations. Therefore, study participants’ perspectives and treatment-seeking behavior may have been influenced by a specific local design. However, given the participants’ limited awareness of such variations, it is unlikely that their views were influenced by making comparisons. As Oxfam was already working with CHVs and community leaders in the areas of study, their knowledge and acceptance of Oxfam’s program work may have positively influenced the feedback they provided. There is also a risk that data may have been misinterpreted in translation from local dialects.

Results

In March 2015, 1 year after the outbreak started—and 9 months since the first declared EVD case in Sierra Leone—fear remained one of the most common barriers to treatment seeking reported by communities and CHVs. The fear described by study participants was not only of the disease itself but also of the treatment system (i.e., ambulances, Centers, and burial practices). Community respondents and even some of the CHVs had limited knowledge of what took place at each step of the treatment system, and this gap in information appeared to be filled by rumors and myths, which further perpetuated their fears:

No one knows what happens to them when they are taken in the ambulance, they would disappear. So people start to say that if you go inside the ambulance, you don’t even arrive at the treatment Center, they said the ambulance will kill you first. (Female CHV)

The most commonly expressed fears were as follows:

1. The ambulance, which had been rumored to kill one upon entering. One male participant said, “The sound, [makes siren sound], it’s like the siren is calling ‘I’m coming to kill you kill you kill you.’”

2. The Centers, because little was known about what took place inside and who was working there. This led to rumors, as shown by one female participant, who thought “once you enter they give you a pill and it kills you.”

3. The lack of information on where loved ones were taken and what happened to them. As one female participant said, “They take [the patient] away and that is it, you will never hear from them again.”

The greater the physical distance to Centers, the more severe these fears appeared to be, and the greater the barriers to seeking treatment. Given these preliminary qualitative findings, further investigation was conducted to better understand the relationship between proximity to Centers and treatment-seeking behavior. The results of this study indicate that physical proximity to Centers appeared to increase willingness and intent to seek treatment as a result of four factors:

1. The ability to walk to care and avoid ambulance referral

2. Familiarity with the function of the Center

3. Access to patient information

4. Community ownership and trust

In addition, where a PHU was also present, the construction of a Center allowed for the reinstatement of regular health care, which was often suspended because of Ebola.

The Ability to Walk to Care and Avoid Ambulance Referral

Families living far from Centers had been forced to call a hotline and await an ambulance to collect the sick. Participants reported that calls were sometimes not answered, but when they were, many people were reluctant to get into ambulances:

The ambulance can kill you. They spray it with so much chlorine that you cannot breathe. Even though we are supposed to tell people to call 117, and I do, I do not want to call it. I think I would die.… It’s better now, we can walk to the Center. (Female CHV)

Walking to treatment was publicly encouraged as a safe option: “The radio says, ‘If you walk yourself to treatment, you will walk home,’ so we know that if treatment is close and we go early, we can survive” (male participant).

Being close to Centers meant that participants could bring sick patients in for tests and/or treatment. As one mother explained, she carried her child in for testing because “I could take him myself, then I knew that the chlorine [in the ambulance] could not spray and kill him” (female participant).

One male CHV reported that the community had known many Ebola patients taken away in ambulances who did not return, and so many local people came to believe that the ambulance caused their deaths. He said that because the new Center was close, even people who did not have Ebola would go for a check if they were sick, as long as they could avoid the ambulance.

Familiarity With the Function of Centers

Distance from Centers was felt by interviewees to inhibit their understanding of what took place inside Centers and what they could expect if they were admitted for treatment. This had led to rumors about the purpose and function of the Centers. As two female CHVs from Port Loko and Freetown explained, “They think that the food is poisoned, or that they give you a pill to poison you” and “There were rumors that the needle to test you actually is poison and the test kills you.” A male CHV said, “Some people heard about the incinerators, they said they were to burn people, they thought they used them to make people disappear.” When communities were far from the Centers, such rumors could not easily be dispelled.

Conversely, CHVs explained that working with communities closer to a Center was easier, as people were familiar with the Center and how people were treated inside:

Today, everyone will go. They know where their family is, they can see people go in and out of the Center, so they see that no one is being burned inside, none of these stories from before are true. They can see with their own eyes. (Female CHV)

They can see people go inside, they can see them waiting, and they can see when someone dies how they are buried. They can see that they are not being poisoned. This reassures them. They will listen to me now and go for testing. (Male CHV)

Physically seeing the Center and knowing that their loved ones were close and how they were being cared for provided a great deal or reassurance for many: “Now the Centers are close, we can see them and we know where our loved ones are. Now people should not be scared” (female participant).

The proximity to Centers appeared to reduce many of the rumors and fears about the operations within the Centers.³ One male CHV explained that before a Center was constructed in his community, he did not know what one looked like or how it worked, so it was hard for him to convince sick people in his village to go for treatment. Now he could explain in detail how the Center operated, and the community members would see that he was telling the truth; he said that this changed the community’s willingness to go for testing and treatment.

Access to Patient Information and Updates

Three young adult males in Port Loko (17–19 years old) who had lost parents before the Centers were built explained how for days they received no information on where their parents were or whether they were alive. It was only with the arrival of contact tracers coming to place them under quarantine that they were informed of their parents’ deaths. One female participant reported waiting 12 days, worried for her husband, until the contact tracers arrived, but when they did they still could not tell her whether he was alive. When she too fell sick and was taken to a treatment Center in town, she heard of his death from a nurse. These participants explained that the lack of access to information and patient follow-up led many to fear reporting a sick person in the future:

My mother got sick and they came and took her away; we did not have any information. When my brother got sick next we were so scared, because we did not know what would happen. We knew nothing about our mother, and now my brother would be next. We did not want to call 117 and lose him too. (Male participant)

During the first months of the outbreak in Port Loko, when the district had no Center, participants explained that there was almost no access to patient information. One female CHV said that “mothers are used to going to the hospital with their children when they are sick, but this time, the young child was taken away, and mothers were left without any news of her condition.”

Some families said that they tried to do their own follow-up, but the Center was too far away, it was expensive to travel, and they would be breaking travel restrictions, so they were forced to wait instead. Some study participants in Port Loko explained that when someone died in a Center outside Port Loko, families were often unable to visit the grave or be part of the burial of their loved one. One female CHV described why this fear led a family in a village to hide their sick mother: “They are too scared that their mother will be burned or in a mass grave, that the [burial] practices will not be respected, so instead, they hid her.”

Being close to a Center meant that families could easily access information about patients. Similarly, being able to pass messages on to patients, even if through a staff member, was important to them and helped reduce fear around treatment:

My son was sick, we were so scared. But when we took him [to the Center], the nurse promised to come and give me information. I could come in and bring him food and she would talk to me about him. This gave me strength every day, knowing he was alive. (Female participant)

CHVs also explained that being in a position to provide community members with information on their family members would encourage them to send sick relatives for care:

I tell them that I can go to the Center every day for them, and bring them information while they are quarantined. Those who are not under quarantine can now walk there themselves. When they know that their brother or sister is still alive, when they believe that I can give them this information, they will trust me. They will make sure to send them. (Male CHV)

CHVs working in John Thorpe, in Freetown, explained that in order to encourage treatment, they would promise community members that they would check in on patients as often as needed. They said that it was reassuring to families to be able to communicate with one another through the walls of the Center. Women in one FGD explained that they could walk a patient to the clinic, hear his or her voice on the other side of the tent, and know where to find him or her (FGD, female participants, February 4, 2015).

In response to this common feedback, many Centers were increasingly built and adapted to allow family members to speak to one another and to bring food for patients:

My sister was inside, but I knew she was there, I could hear her from outside and bring her food and make sure she was eating. It was not as scary, I knew where she was and I could make sure they cared for her. (Female participant)

Community Ownership and Confidence

The communities participating in this study reported numerous ways in which they engaged in the establishment of Centers. For example, participants reported being involved in consultations on location and design as well as being involved in openings. They felt that the community’s involvement in decision making had been good and that this encouraged the use of the Centers. As one female CHV said, “We were all asked our thoughts on the Center. We made some recommendations about the walls and they listened; this was good.”

In all three districts, participants said that community leaders were involved in site selection and in some cases asked questions about how Centers would be set up. In several locations, there were opening ceremonies to which people from surrounding villages were invited. Some participants were invited to view different parts of the Center and were shown how it would operate prior to its opening:

They came and talked to the chief, they decided where it would be and how we wanted it. Then the chief came and talked to us, and we listened and we accepted. We are happy to have the Center; now people have somewhere to go when they are sick. (Female participant)

A male CHV said, “When it was opened, the chiefs and different people came together, they talked and presented and explained the CCC, they told our story and made it a very nice day so that no one was scared.”

Where Centers employed people from the local community, participants felt that this increased trust and familiarity. One female participant said:

We know who is working inside; my cousin is there … they are our neighbors. If we know they are inside, we know we are safe and so we will go. We know that they will not harm us, they will take care and they will inform our families where we are.

Community members spoke of the encouragement they received from those working in Centers, which helped to build confidence in the community to seek treatment: “My cousin works there. She will make sure that when someone is sick they go to the CCC. She has even gone to some houses, to encourage them herself; because she knows them, they listen” (male CHV).

Reestablishing PHUs and Primary Health Care

Three targeted communities had operational PHUs prior to the opening of Centers. Research participants from these locations explained that, at first, EVD patients attempted to go to the PHUs. However, this left staff, who were poorly prepared to manage the highly infectious disease, feeling at risk and scared to help anyone who had Ebola symptoms, which several study participants said resulted in many PHU staff leaving. Some community members said that as a result a number of PHUs were forced to close. In nine FGDs, respondents shared that they had known women who had gone to a PHU when going into labor and were refused treatment.⁴ One male participant explained: “My sister went there to have her baby. She was bleeding, they refused her. They would not let her in. She went back to her home and died having her baby. Now her children are left without their mother.”

Participants said that, since the Centers opened for EVD patients, the PHUs, which had been decontaminated, were finally available again for care. In such cases, the creation of the Centers improved treatment seeking for non-Ebola needs:

It took some time—they had to come in and disinfect everything, and then the chiefs came and talked to everyone. Now everyone knows where to go when you have Ebola symptoms, and the PHU, you see, the women are lined up in front. It is working now … The women are going again … Before they had nowhere, but now they can go back. (Female participant)

Conclusion

During the 2014–2015 Ebola outbreak, Oxfam worked in community outreach programs to facilitate treatment seeking and reduced Ebola transmission. To respond to the continued gap in services, Oxfam partnered with medical organizations to provide WaSH services to EVD Centers located within affected communities. Despite a nationwide social mobilization strategy, some still refused to seek treatment. In order to improve the community outreach strategy to better address barriers to and enablers of treatment seeking, a qualitative study was conducted to understand these influencers. Proximity was identified as a key factor influencing treatment-seeking behavior in the first round of community discussions, so additional research was conducted into this.

The qualitative data collected in this study indicate that proximity to Centers may:

1. Reduce the need for ambulances, which are feared, and therefore increase willingness to seek treatment;

2. Reduce myths about the operations of Centers, and therefore improve opinions about their safety, thereby increasing treatment-seeking behavior;

3. Improve communities’ access to patients and information on their status, reducing fear and increasing willingness to send sick family members for treatment; and

4. Allow community members to be involved in decision making around the establishment of Centers as well as their day-to-day working, which builds trust in the function of the Centers.

Study participants in communities that had a PHU that had shut down during the EVD outbreak reported that the construction of a Center allowed PHUs to reestablish regular medical care, notably prenatal care.

From the research with communities, it appears that within the study’s catchment areas, the Centers have been largely accepted and have positively influenced willingness to seek treatment. Moreover, the families and communities living around Ebola victims expressed the importance of their engagement in the care process and their proximity not only to the Center itself but to the patients inside. They cited their involvement through continuing traditional caregiving roles, providing food, or simply visiting and showing support for patients, as well as being kept up to date on the status of loved ones, as key factors that strengthened treatment-seeking behavior.

The results of this study were shared with Oxfam teams and other actors working in the study locations to help them adapt their community outreach approaches to reducing EVD transmission. This has included working with communities on the design of the Centers and setting up open days when community members can go inside, examine the ambulances, and receive clear information about EVD treatment.

To reduce Ebola transmission and ensure the best possible patient outcomes, it is important that suspect cases are referred or self-referred as early as possible after the onset of symptoms. When this first referral point is brought close to the potential patient, and fear and mistrust of the system in general are reduced, treatment-seeking behavior appears to be greatly enhanced.

Future Research Opportunities

There remains a lack of evidence of the extent to which the severity of the outbreak or its duration may impact the acceptance of Centers within a community. Perceived acceptance by participants in this study exposed to high levels of local transmission will not necessarily be replicated during the initial phase of an EVD outbreak in communities not previously affected. Further research either before or during the outbreak could explore whether the apparent acceptance by communities of Centers was indeed dependent on the stage of the response and exposure to impact.

Appropriate models, design, and operations of Centers require specific epidemiological and clinical research (varying by geographic and socioeconomic contexts) in order to develop a model of a Center that not only would be accepted at the community level and encourage treatment but also would be set up in the most efficient and effective way possible to have the greatest impact on the outbreak.

Qualitative research aimed at better understanding the barriers to and enablers of treatment seeking has provided Oxfam with insight into the causes of relevant behavior, thereby allowing for improvements in community outreach and WaSH interventions in the Ebola response that specifically address fears and facilitate proximity and access to care. The challenges of treatment seeking highlight the importance of considering community perceptions and the need to engage communities to better understand causes of behavior in order to develop appropriate interventions.

In order to ensure that any future Ebola response creates an environment that encourages treatment seeking while also rapidly responding to reduce the spread of the disease effectively, additional research must be carried out to define the best approaches to Centers. This includes understanding the most appropriate and accepted locations (at the onset of the outbreak), set up, and best design guaranteeing safe treatment and care for patients.

Acknowledgments

This study was conducted with the great support of Oxfam International’s Sierra Leone country team. Our staff worked in extreme conditions during this response, and for this we are grateful. It is with appreciation and respect that we thank the participants of this study, who gave their time, perceptions, and stories to help us better understand their communities and their needs.

Notes

¹ For example, in November 2014, Medicin Sans Frontiers stated, “The way [CCCs are] operating, the way they’re putting responsibilities on the community, and the way they’re designed is not something [Medicin Sans Frontiers] is behind at this point” (Gulland, 2014).

² Community outreach was part of the National Social Mobilization Pillar. Its aim was to contribute to the government’s national strategy to end the transmission of EVD through evidence-based social mobilization, public education, and behavior change.

³ A study conducted on community preferences in Ebola interventions in Uganda also found that proximity and familiarity were key barriers to treatment seeking. The study reported that communities did not like being unable to view the areas surrounding the treatment Centers and isolation wards (Raabe et al., 2010).

⁴ This was also found by the WHO during interviews in Kono district: Community members told them that they had to walk further for regular medical care after the outbreak (WHO, 2015).