Facilitators and Barriers to Community Acceptance of Safe, Dignified Medical Burials in the Context of an Ebola Epidemic, Sierra Leone, 2014

Abstract

Sierra Leone was heavily affected by the Ebola epidemic, with over 14,000 total cases. Given that corpses of people who have died from Ebola are highly infectious and given the extremely high risk of Ebola transmission associated with direct contact with bodies of people who have died of Ebola, community acceptance of safe, dignified medical burials was one of the important components of efforts to stop the Ebola epidemic in Sierra Leone. Information on barriers and facilitators for community acceptance of safe, dignified medical burials is limited. A rapid qualitative assessment using focus group discussions (FGDs) explored community knowledge, attitudes, and practices towards safe and dignified burials in seven chiefdoms in Bo District, Sierra Leone. In total, 63 FGDs were conducted among three groups: women >25 years of age, men >25 years of age, and young adults 19–25 years of age. In addition to concerns about breaking cultural traditions, barriers to safe burial acceptance included concerns by family members about being able to view the burial, perceptions that bodies were improperly handled, and fear that stigma may occur if a family member receives a safe, dignified medical burial. Participants suggested that providing opportunities for community members to participate in safe and dignified burials would improve community acceptance.

Sierra Leone experienced the highest number of Ebola virus disease (Ebola) cases in the Ebola epidemic in West Africa that began in March 2014 (Centers for Disease Control and Prevention, 2015a). Ebola is spread through contact with the bodily fluids of infected individuals who are symptomatic, or through contact with an Ebola-positive corpse, which is known to be highly infectious (Centers for Disease Control and Prevention, 2015b). In Sierra Leone as well as several other countries in West Africa, washing a corpse in preparation for burial and touching a corpse during a funeral are common and important components of local funeral rites (Grundy, 2015; Richards et al., 2015; Richards & Mokuwa, 2014). According to local beliefs, burial rituals signify safely sending loved ones off into the afterlife, where they will be reunited with their ancestors (Richards et al., 2015). It is believed that failure to properly bid farewell and bury a relative may result in misfortune, curses, or illness for a family or community (Richards et al., 2015). If the deceased person held a high social status, the funeral can last for days and involve a large number of participants (World Health Organization, 2014a). With this recent epidemic of Ebola, and in previous outbreaks, a high proportion of people who became infected were exposed to Ebola during the preparation of the body for the funeral or at the funeral (Dietz, Jambai, Paweska, Yoti, & Ksaizek, 2015; Lamunu et al., 2004; Richards et al., 2015).

In October 2014, a second round of a survey on knowledge, attitude, and practices (KAP) relating to Ebola prevention and medical care in Sierra Leone was conducted to assess changes in knowledge, attitudes, and practices. Compared to traditional cultural beliefs and to a baseline survey conducted in August 2014, the October 2014 survey found that many people may have been suspending their traditional beliefs because of the Ebola epidemic. With a goal of identifying gaps and prioritizing areas of urgent need, the survey found that a small number of respondents had participated recently in funerals that involved touching (5%) or washing (3%) the dead body during the ceremony. However, 32% of respondents still rejected safe alternatives to traditional funerals (Focus 1000, Centers for Disease Control and Prevention & UNICEF, 2014). Moreover, a cemetery and burial practices assessment conducted in Sierra Leone around the similar time period found inadequate cemetery space and management by the burial teams (e.g., graves were hand-dug, often not to the recommended depth) (Nielsen et al., 2015).

The practices for medically safe burials were later formalized in October 2014 through the adoption of a standard operating procedure (SOP) on safe, dignified medical burials, by the Sierra Leone Emergency Operation Center (EOC) (Nielsen et al., 2015, National Ebola Response Centre., 2015). The SOP provides guidance on (1) application of the standard case definition for deceased individuals; (2) proper burial procedures that include family engagement, precautions, safe body preparation, removal, and transport of the body, burial site preparation, and vehicle decontamination after transport; and (3) the disposal of potentially contaminated household materials. The SOP recommends that in geographic areas with high rates of transmission of Ebola, safe, dignified medical burials be conducted within 24 hours for all deaths, regardless of the laboratory results (Nielsen et al., 2015). Importantly, the SOP emphasizes the need to ensure practices are dignified in order to increase community acceptance (Nielsen et al., 2015; World Health Organization, 2014b).

With reports confirming the spread of Ebola in Sierra Leone despite the availability of medically safe burials, it was essential to determine community-level barriers to acceptance of medically safe burials. However, information about community knowledge, attitudes, and practices regarding burial practices within the context of Ebola transmission has been limited. In order to better promote the utilization of medically safe burials in Sierra Leone, we conducted a rapid qualitative assessment to identify perceived barriers to and facilitating factors around accepting safe burials that may inform emergency response strategies with the goal of reducing transmission of Ebola in Sierra Leone.

Methods

Bo District, located in the center of Sierra Leone, is the second most populous among the 14 districts in the country (Statistic Sierra Leone, 2006). Bo was selected because it shares a border with Kenema district (Figure 1), which was a known epicenter of Ebola with 429 confirmed cases as of October 1, 2014, second highest next to Kailahun district (530 confirmed cases) (Sierra Leone Ministry of Health and Sanitation, 2014). The Bo District Social Mobilization Team, consisting of experienced community health promoters from the local government as well as local religious and nonprofit organization leaders who had in-depth understanding of local cultural norms practices, was tasked with community sensitization and communication of Ebola-related information. The team collaborated with Centers for Disease Control (CDC) technical advisors to develop a rapid focus group methodology (initial proposal, development of methodology, approvals, data collection activities, and analysis were completed in fewer than 4 weeks) to identify barriers to and facilitators of community acceptance for safe, dignified medical burials.

Fig. 1. Seven chiefdoms included in focus group discussions in Bo District, Sierra Leone, October 2014. The map was produced by B. Maholland, Geospatial Analyst with the CDC/OPHPR/DEO/Situation Awareness Branch (GADM Database of Global Administrative Areas, Version 2.0).

A purposive sample of three villages was selected in each of 7 of the 15 chiefdoms of Bo District to be part of focus group discussions (FGDs). The chiefdoms are the third-level units of administration in Sierra Leone; they are hereditary tribal units of local governance (Reed & Robinson, 2013) and consist of approximately 20,000–50,000 persons. Selection criteria for the chiefdoms included that they (1) had suspected or confirmed cases in the past month, or (2) shared borders with chiefdoms with suspected or confirmed cases at the time of data collection. Selection criteria for the villages within each selected chiefdom included (1) whether villages were urban or rural, (2) the primary language of the village, and (3) whether or not the village has had direct experience with Ebola transmission (i.e., cases of Ebola were linked to the village) (Figure 1). Permission to conduct FGDs was obtained from local authorities in each of the selected communities. In each of the 21 selected villages, one FGD was conducted with each of three groups (men >25 years of age, women >25 years of age, and young adults 19–25 years of age), resulting in 63 FGDs overall.

To ensure consistent data collection, the Bo District Social Mobilization Team leadership and CDC staff conducted a one-day workshop for the FGD moderators (n = 7) and note takers (n = 14), which included training on Ebola messaging, FGD methodology, safe fieldwork guidelines, and FGD implementation guide created for this study (see the Appendix). The FGD implementation guide was collaboratively developed by the Bo District Social Mobilization Team members and CDC staff with the goal of capturing community understanding of Ebola, normative behaviors at funerals/burials, and barriers to and facilitating factors for conducting safe, dignified medical burials. The FGD process was led by moderators who were trained in the FGD implementation guide, but it remained unstructured to allow for themes to emerge spontaneously.

FGDs were conducted during the week of October 20, 2014. FGDs included an average of 6 participants (range: 3–8) with 1 moderator and 2 note takers. All FGDs were conducted in local languages (Mende and Krio), each FGD session lasted 60–70 minutes, and sessions were not tape recorded. Two trained note takers per FGD took field notes, which were reviewed and translated into English. Participation was voluntary and oral consent was obtained by all participants.

Grounded theory guided the analysis (Corbin & Strauss, 2014) and we incorporated both emic and etic approaches due to the immediate purpose of the study. We were required to lean more heavily on an etic approach to identify participant behaviors that posed Ebola transmission and acquisition risks given that the Ebola epidemic was a severe public health emergency. However, in identifying strategies to increase community acceptance of safe and dignified burials, we employed more of an emic approach and drew out suggested strategies from the participants’ perspectives (Morse, 1994). Field notes were reviewed to create a coding scheme that captured emerging themes into families of codes on knowledge, attitudes, and practices regarding burial practices. The first author, who directed the FGD activities in Bo District, coded all FGDs. The Bo District Social Mobilization Team lead (6th author) reviewed and approved the codebook and coding. Following initial coding, an interactive analysis workshop was conducted with the Bo District Social Mobilization Team and data collectors in order to reach consensus on coded and salient themes.

This project was approved by the Bo District Health Management Team (DHMT). The protocol for this project was reviewed by the CDC Human Subjects Research Office and was determined to fall into an outbreak response category, as the intent of data collection was to assist with developing immediate interventions aimed at reducing disease transmission (45 CFR 46.102(d)).

Results

Salient themes and suggested solutions from FGDs are summarized (Table 1), and these were generally common across all villages, genders, and age groups. Across the FGDs, there was substantial familiarity with the key Ebola messages, such as “Ebola is real,” “Avoid body contact,” “Do not touch a sick person or a dead body or their body fluids,” and “Isolate the sick person or dead body and call for help”. Most FGD participants expressed disappointment and sadness concerning the inability to perform traditional burial practices. However, participants acknowledged that “Ebola time is special—similar to wartime” and there was a recognition that guidelines to promote safe, dignified medical burial had to be followed.

Table 1. Themes and suggested solutions from the focus group discussions (FGDs) to identify barriers to and facilitators of community acceptance for safe, dignified medical burials, Bo District, Sierra Leone, 2014

Theme	FGD findings	Suggested solutions
Community’s understanding of Ebola	Substantial familiarity with the key Ebola messages.Disappointment and sadness concerning inability to perform traditional burial practices.	“Ebola time is special—similar to wartime,” a recognition that guidelines to promote safe, dignified medical burial had to be followed.
Barriers regarding safe, dignified medical burials	Witnessing or hearing about burial teams disrespectfully “taking away” the body.Family members that were not permitted to observe safe burials.Little awareness of what happens to bodies at the cemetery.Stigma around Ebola and fear of quarantine.	Discredit inaccurate rumors by explaining what happens at the cemetery to the community members.
Facilitators regarding safe, dignified medical burials	Restoring trust and confidence in safe, dignified medical burial.Community safe burial: community members could dig the grave while waiting for the burial team to arrive.	A religious leader (pastor or imam) to pray for the dead person.Notifying family members if a patient died in an Ebola Treatment Unit so that they could be present at the cemetery.Many were willing to learn how to conduct safe, dignified medical burials themselves.

FGD participants raised a number of concerns about how bodies are collected and what happens to them after collection by the authorities. Participants reported witnessing or hearing about burial teams disrespectfully “taking away” the body and family members that were not being permitted to observe safe burials, which would be inconsistent with the SOPs. Although participants were familiar with burial teams’ procedures for placing the body in a body bag and decontaminating the house, they had little awareness of what happens to bodies at the cemetery:

We do not know what happens at the cemetery when the burial team takes our loved ones to be buried. —Adult male participant, Foya Bumpeh Chiefdom

… [W]e are not pleased with the information on the way the body is buried, the burial team has no respect for the dead, they stand far and push the body off into the pit. In the past we honor the dead and pay respect. For me I have seen where a lady died and the way they handled it, even though we did not know the cause of the death, they took the body in a disrespectful manner and pushed the body in the ambulance like any animal. —Young Adult participant, Foya Bumpeh Chiefdom

Participants mentioned that some community members believe that burial teams dismember bodies, harvest organs, or take blood from the dead body, and that is the reason that family members are not allowed to observe burials:

[The rumor] is that the medical burial team is not handling the body respectfully. We heard rumors that burial teams will take heart, liver, blood from the dead. This is very disrespectful. We are totally against the practice. —Adult male participant, Badjia chiefdom

Participants reported that these misconceptions, disrespectful behaviors of the burial team, and lack of transparency regarding current safe burial practices led to distrust towards burial teams and caused consternation in the community.

While participants across age and gender groups had many common ideas about what could facilitate acceptance of safe and dignified burials, only men and male youth stated that they were interested in learning how to conduct safe, dignified medical burials themselves. This view was reinforced by community leaders. For example, one town chief suggested that male community members could dig the grave while waiting for the burial team to arrive. Likewise, a Paramount Chief (the highest ranking leader at the chiefdom level), shared his sentiment that, “the capacity of the community to learn should not be underestimated.” The importance of restoring trust and confidence was emphasized, for example, by conducting the burial within the village via community safe burial, or notifying family members if a patient died in an Ebola Treatment Unit (ETU) so that they could be present at the cemetery. In addition, participants wanted a religious leader (pastor or imam) to pray for the dead person either at the time the body was retrieved from the ETU or at the cemetery.

Another notable theme that arose from the FGDs was the awareness that if someone reports a sick individual thought to have Ebola, or the body of someone thought to have died of Ebola, the entire family would likely be quarantined, and consequently, highly stigmatized:

We feel sorry for those who are quarantined, because they do not move or go anywhere; their freedom is restricted. Even the food is not sufficient for them. It is harvest season and people cannot harvest because of quarantine. —Female adult participant, Kakua chiefdom

It is heart rending; especially ostracizing and stigmatizing family members and friends who are suspected and quarantined. —Young adult participant, Tikonko chiefdom

Stigma and fear of being quarantined created a significant barrier that could cause people to not report those with symptoms of concern with respect to Ebola, or deaths.

Overall, participants accepted the core concepts of safe, dignified medical burial practices to end Ebola transmission. To enhance the likelihood of community acceptance, many FGD participants suggested several key recommendations:

1. Discredit inaccurate rumors about safe, dignified medical burials by explaining what happens at the cemetery to the community members.

2. Respect the deceased by (a) having the burial team place clothing provided by the family on top of the body before the body is placed in the body bag, and (b) using a white shroud to wrap the body per Muslim traditions, or, alternatively, using a white body bag.

Discussion

Similar to other studies (Hewlett & Hewlett, 2007; Nielsen et al., 2015; Richards & Mokuwa, 2014; Thompson & Das, 2015), our findings suggest that there are both important barriers and facilitating factors related to community acceptance of safe, dignified medical burials. Barriers include fears about how bodies are handled, lack of ability to view or participate in the burial at the cemetery, and the potential for quarantine and stigma when a family member requests collection of a body or following a burial. Facilitating factors for community acceptance may include community participation in digging the grave, as well as the possibility of participating on local burial teams (following appropriate training). While most ideas of barriers and facilitating factors were similar across the age groups and gender, a clear difference was found in that only men and male youth, not women, expressed interest in learning how to conduct safe, dignified medical burials themselves. Districts with larger cities or towns (e.g., Bo) were more likely to bury bodies in cemeteries only, which often resulted in many bodies being placed together in the backs of trucks in unmarked body bags, a practice that was distressing for families (Nielsen et al., 2015). Other districts (e.g., Moyamba) had both cemetery and community burials. Community burials were conducted by burial teams, with help from community volunteers for grave digging and carrying the corpse on a stretcher, and use single graves dug by the community outside of an established cemetery. Community and family member interviews found that community burials were more acceptable to community members than safe cemetery burials because families were more involved and procedures were more transparent (Nielsen et al., 2015). The SOP specified that the grave should be dug by a grave digger before the burial team arrived with the bodies, and the burials will take place in designated sites approved by local communities (National Ebola Response Centre, 2015).

Conducting refresher trainings on the safe, dignified medical burial SOP for burial team members could alleviate concerns about mishandled bodies that were mentioned by the participants. For instance, observational assessments of burial practices in Sierra Leone conducted during in October 2014 (same time period as our study) found that: (1) deaths were not always reported, (2) not all bodies were collected by the burial teams, and (3) bodies were handled in an inappropriate or undignified manner, such as family members not being allowed to observe the burial of a loved one (Nielson et al, 2015). A similar rapid qualitative assessment conducted in Monrovia, Liberia in November 2014 reported that families were often not informed about which unit their loved ones were being taken to and considered the treatment units as “black holes’ where loved ones disappeared (Kutalek, Wang, Fallah, Wesseh, & Gilbert, 2015). Social mobilizers reported that most communities did not trust members involved in the Ebola response (Elston et al., 2015). All of this could lead to community distrusting of the members within the Ebola response team and could result in not reporting the sick person or dead bodies. The SOP contains specific steps on family engagement that include counseling the family about why special steps are needed to protect the family and community from Ebola and allowing family members to provide any objects that they wanted to be buried with the body (e.g., clothing). In addition, family members can observe the burial from a safe distance, and if the family is not able to attend the burial, the burial team supervisor should inform the family of the exact location of the grave in the cemetery (National Ebola Response Centre, 2014).

Improved communication is necessary to reduce misinformation and improve compliance with prevention and control measures that have been proven effective (Ansumana, Bonwitt, Stenger, & Jacobsen, 2014). For example, we found that some community members believed that burial teams dismember bodies, harvest organs, or take blood from the dead body. Others have documented rumors that Ebola was an excuse for medical teams to harvest organs (Grant, 2014). One possible explanation for such beliefs is that community members may have been drawing from their experience in Sierra Leone with the traditional post mortem investigation of internal organs conducted by community leadership (e.g., the men’s secret society) to look for signs of the true character of the deceased. Traditionally, people believe the outcome of this post mortem investigation would have an impact on the death rites (MacCormack, 1985).

Efforts to reduce the fear of stigma associated with quarantine after reporting a sick individual or corpse could be beneficial. Engaging with town chiefs who have successfully implemented quarantines could help reduce or prevent stigma and successfully implement quarantine. Effective quarantine strategies might include (1) hiring young men in the village who are not quarantined to help with the harvest and (2) encouraging community members to deliver clean water or food to quarantined homes. Community members expressed that these activities could reinforce the message that Ebola is a disease that needs to be fought as a community, which could reduce the stigma of Ebola and, as a result, reduce barriers to conducting safe, dignified medical burials.

This assessment has several limitations. This study was conducted during the height of the Ebola epidemic in Sierra Leone with limited resources and an urgent timeline. We were not able to triangulate our findings and we also did not have the ability to conduct follow-up FGDs to probe for cultural and historical contexts. Nevertheless, these findings were critical in improving the local and national communication strategies to prevent and end Ebola transmission. Although our findings are not generalizable, it is likely they represent the views of the chiefdoms included in the study. There is a potential for loss of information because we were not able to record the FGDs, and field notes had to be translated from local languages into English. However, we were able to have 2 note takers for each FGD. As a rapid qualitative assessment in the midst of an emergency response, we had limited time and resources to record, transcribe, translate, and analyze. In addition, Bo Social Mobilization Team leadership advised that the use of recording device could bias the responses. Lastly, there is a potential for social desirability bias because when people are in group settings, they might be more inclined to provide socially acceptable responses (Hollander, 2004).

These preliminary findings were shared with the Bo District EOC, and the following immediate action items were recommended:

1. Conduct refresher training on the safe, dignified medical burial SOP for burial teams.

2. Continue efforts to sensitize the community with updated information on safe, dignified medical burial practices.

3. Implement standardized quarantine plans and communication strategies to reduce the fear of stigma associated with quarantine after reporting a sick individual or corpse.

Since the assessment, Sierra Leone has addressed many of the recommendations addressed in this report. For example, burial teams now include religious leaders (pastors or imams) and allow family members to perform religious rites, such as prayers, at a safe distance (Marshall & Smith, 2015). Additionally, burial teams were restructured to include Community Liaison Officers who contact family members prior to the arrival of the burial team to explain and coordinate the safe, dignified medical burial with the identified community leader and family members. Furthermore, the number of trained burial teams was increased to ensure timely response. A burial team assessment conducted concurrently with our study in October 2014 reported that there were 4 trained burial teams within Bo District, with 8 persons per team, which collected an average of 4 bodies per day within 1–3 days of death notification (Nielsen et al., 2015). In March 2015, Bo District reported that there were 10 trained burial teams, with 10 persons per team, and all bodies were collected within 24 hours. These improvements were facilitated in part by ongoing social mobilization efforts to inform and educate community members about safe, dignified medical burials. Achieving broad acceptance of safe, dignified medical burials was an essential strategy for interrupting Ebola transmission in Sierra Leone during the worst Ebola outbreak in history.

Acknowledgments

The authors acknowledge the Bo District Social Mobilization Team, Sierra Leone; CDC Sierra Leone Ebola Response Team; Mohamad Jalloh, FOCUS 1000, Sierra Leone; Darren Hertz, International Rescue Committee; Mutale Mumba, World Health Organization; Barbara Knust, Division of High-Consequences Pathogens and Pathology, National Center for Emerging and Zoonotic Infectious Diseases, CDC; Alicia Anderson, Division of Vector-Borne Diseases, National Center for Emerging and Zoonotic Infectious Diseases, CDC; Carrie Nielsen, Division of Parasitic Diseases and Malaria, Center for Global Health, CDC. The findings and conclusions in this report are those of the authors and do not necessarily represent the official position of the Centers for Disease Control and Prevention.

Appendix: FGD Facilitation Questions

THEMATIC AREA 1: Communities’ understanding of Ebola Virus Disease

Question 1: What do you think about Ebola?

Probes:

• Tell us about your concerns regarding Ebola in your community or family

• How do you think people are getting Ebola?

• Further probe around burial practices.

THEMATIC AREA 2: Identify barriers and boosters in shifting normative behaviors relating to traditional funerals/burials

Question 2: Before Ebola, when someone died, what happened? Please tell us about the common burial practices.

Probes:

• Please tell us how the body is usually prepared for the funeral/burial

• Tell us about different steps regarding tradition and religion (get perspective from both Christians and Muslims); details on what do they wear, color of clothing, how many days, who prayed, who comes to the house, what is the most important and why?

• How do people in this community find “closure” after losing a loved one?

• Please share with us why these practices are important to people in this community.

Question 3: Now that Ebola is here in Sierra Leone, what have you heard that we should be doing when someone dies? [Probe knowledge of calling 117 to discuss safe medical burial]

Probes:

• Could you please tell us how people in this community feel about these promoted practices?

• What do you think would make people accept or refuse to accept these changes?

• Further probe: religion; tradition; culture; secret society; respect; trust/lack thereof.

• People who do not agree with these: what do you think they would do if their loved one dies?

• Are you worried that someone will hide the body because they do not want safe medical burial?

• Further probe: If so, let’s discuss what we think might encourage them to not hide the body.

Question 4: People have now been encouraged to call 117 to report deaths. We would like to discuss what you think people are doing—or would do—after calling 117 and waiting for the burial team to arrive.

Probes:

• What has been people’s experience with 117? Let’s discuss the response time.

• How long do you think people are willing to wait for help (burial team) to arrive?

• If there’s no response (or delays) from 117, what do you think people would do? Why?

Question 5: Please share with us what you or others have seen happen at the house as part of the safe medical burial? What about at the cemetery?

Probes:

• How do people in your community feel about these practices?

• How confident are people that their deceased loves ones are given a respectful burial?

• What about them do you find appropriate or inappropriate? Let’s discuss them briefly.

Question 6: Do you know what happens to the house after the body is removed from the house and buried at the cemetery? Do you know what happens to the other members of the household?

Probes:

• How do you feel about quarantining those in the same household as the deceased?

• How do you feel about identifying people whom they may have been in contact with?

THEMATIC AREA 3: Solicit feedback on acceptable and safe alternatives to traditional funerals/burials

So by now you may have heard that people are being asked to stop touching, washing, cleaning, kissing, and wrapping the dead body in order to help protect them and their loved ones from getting Ebola.

Question 7: What will encourage people in this community to stop touching, washing, cleaning, kissing, and wrapping the dead body?

Question 8: What can be done to make the safe medical burial processes better? And maybe you can also share with us why these are important to you and your community.

Probes:

• How do you feel about having white body bags?

• How do you feel about having a religious representative present either at the home or at the cemetery?

• How do you feel about playing a recorded prayer (Islamic or Christian) in the ambulance while transporting the body to the burial site?

• How do you feel about selected relatives who are able to observe the burial from a safe distance?

Question 9: Do you have any other recommendations for us on making a safe medical burial process more acceptable?

Probe:

• Who can be the people that can help explain the process or ease the process? Religious leaders, village chiefs, community elders?

• How do you feel about markings at the grave? Why are they important or not important to people in your community?