Grief and memorialisation: making meaning with Ebola-affected families

In order to prevent the spread of Ebola through the handling of dead bodies, burials are carried out by special teams who are trained to do this in a safe and dignified manner. This should be standard practice by response teams, and has been implemented in the North Kivu outbreak. A medically safe burial involves the use of body bags, disinfectant spray and personal protective equipment (PPE). Although safe and dignified burials (known as SDBs) were acknowledged as important in controlling the 2013–2016 West Africa Ebola response, the prescribed processes denied many families the chance to say goodbye in the way they would choose, and in line with their cultural values.

The consequences of this can be many, including resentment, anger, mistrust and fear (including fear of misfortune arising from not paying proper respect to the dead) and reduced access to the community support usually associated with traditional mourning practices. T. Van Bortel et al., ‘Psychosocial Effects of an Ebola Outbreak at Individual, Community and International Levels’, Policy and Practice Bulletin of the World Health Organization, 94, 2016. This can appear as so-called ‘community resistance’ as people reject the actions of burial teams or the wider Ebola response. In the long term, when the natural human need for meaning, sense, knowledge, connection and ritual is denied, this can manifest in ongoing suffering, complicated grief and ‘ambiguous loss’, whereby an unclear loss without resolution halts the natural grieving process. P. Boss and J.R. Yeats, ‘Ambiguous Loss: A Complicated Type of Grief When Loved Ones Disappear’, Bereavement Care, 33, 2014. The powerful, natural support systems within family and community networks are easily unsettled in times of crisis, and this lack of understanding and social support from fellow community members presents a further impediment to healing. Bortel et al., ‘Psychosocial Effects of an Ebola Outbreak’. The Inter-Agency Standing Committee (IASC) lessons learnt for mental health and psychosocial support in the West Africa outbreak clearly state that: ‘the bereaved need to have the opportunity to mourn’. In cases where important funeral rites, mourning ceremonies and rituals are not allowed in order to prevent and control infection, dignified and meaningful alternatives should be found. IASC, Mental Health and Psychosocial Support in Ebola Virus Disease Outbreaks: A Guide for Public Health Programme Planners (Geneva: IASC, 2015).

This has not always happened in the North Kivu outbreak. Early reports of community feedback by the International Federation of Red Cross and Red Crescent Societies (IFRC) The IFRC (with support from the Centers for Disease Control and Prevention (CDC)) has been collecting and analysing community feedback gathered from the National Society of the Red Cross since August 2018. indicated frequent delays between notification of a death and the arrival of burial teams: ‘Whilst the body is decomposing’, or teams not arriving at all. Reports suggested that burial teams frequently did not behave respectfully with families. Social Science in Humanitarian Action Platform (SSHAP), Social Science and Behavioural Data Compilation (No. 3), Ebola Outbreak Eastern DRC February–May 2019 (Oxford: SSHAP, 2019). Community feedback collected between August 2018 and May 2019 highlighted an overarching resentment that the Ebola response had not acknowledged the importance or magnitude of people’s grief. Families were feeling ignored: ‘To families who haven’t lost a loved one in this outbreak Ebola is a joke’. International Federation of the Red Cross (IFRC), IFRC Community Feedback to Inform Ebola Response Efforts – July 5, 2019. Community Perspectives on Psychosocial Impacts and Suggestions for Addressing Them, IFRC, 2019.

Analyses of community feedback data collected by IFRC have enabled responders within the Ministry of Health-led Ebola coordination structures to adjust and improve the response, and this has resulted in important improvements in feedback throughout 2019: ‘Before, the responders would hide the dead bodies, but today it’s good because they’ve just agreed to bury the dead where the family wants, thanks for that’. Additionally, the SDB Sub-Commission and Psychosocial Commission, which function as coordination mechanisms for thematic areas of the Ebola response, have worked to ensure that the funeral rites of specific ethnic groups, such as the Nande, are included in SDBs, so that families can be involved during the preparation of the body and during the burial itself.

Informed by feedback data, locally recruited psychosocial agents provide bereaved families with psychosocial support. The Child Protection and Psycho-Social Support (CPPSS) strategy of the Psychosocial Commission (which is co-led by the Ministry of Health and UNICEF) Partners include the Danish Refugee Council (DRC), Alliance for International Medical Action (ALIMA), Division Provinciale des Affaires Sociales (DIVAS) and Division de l’Intérieur (DIVInter). has sought to respond to the specific needs of confirmed and suspect cases of Ebola and their family members. The strategy outlines that affected families be followed up by a psychosocial agent and supported with material assistance such as a funeral kit (food assistance or cash) to contribute to the organisation of a subsequent ceremony. These efforts can at times be undermined, for instance if support takes too long to reach families, or only materialises after ‘community resistance’ has already begun.

Direct appeals to the IFRC include that families want to feel that deaths ‘mattered’ to response teams, including through more formal memorialisation of deceased loved ones. This suggests a need for more investment in community-based, contextually appropriate grief and memorialisation efforts. This would ideally involve local actors with the technical skills to guide families through such a process, and who are aware of the socio-cultural sensitivities and specificities of this work.

Case study: Bethesda support to grieving families

Bethesda is a local counselling organisation based in Beni, North Kivu. It is a faith-based organisation, but services are offered to all. Having operated in Beni and the surrounding areas since 2016, it expanded its services to meet needs relating to Ebola. Bethesda has documented families’ experience of Ebola deaths through community consultations, and has noted many negative experiences: ‘we were very angry as since we have been grieving, we have seen nobody coming here to comfort us, they were coming here often only to record’. Having identified a particular gap in support to families who have lost members to Ebola, Bethesda designed a process ‘to walk alongside grieving families in Beni and Mangina and provide care and healing in the aftermath of Ebola’. This involves guiding small groups of families through the stages outlined in Box 1, culminating in a memorialisation ceremony.

Feedback from families that have received support revealed several positive elements of the process. Many felt cared for and comforted: ‘the sessions have been the first time I have felt comforted, these sessions have helped me’. The value of remembrance was recognised, and specifically having a tangible symbol: ‘From this tree we will tell our girls and boys what happened in Masimbembe’; ‘This tree will help us to remember brothers, sisters and parents taken by the Ebola virus’; ‘While planting my tree, I understood that this will make the situation I went through unforgettable. By eating the fruit from this tree, I will understand that, despite the situation, there can be a moment of joy. This tree represents a flower that I was supposed to plant on the grave of my mother’.

It was also clear that healing does not come from a single act or ritual, and that it takes time: ‘Our healing will be connected to the growth of this tree’. One family member described the process of the Bethesda sessions: ‘The first day I attended the group, there was a time when I felt like the session was touching my heart and directly to my personal issues. When we worked on the goodbye letter, this was the beginning of hope for me. This letter helped me so much and after completing it I felt so much better. The following day was Sunday, I went into my room and read the letter again. After the reading I again felt so comforted. I came to this last session with much joy within me’.

Lessons from self-reflection

In an effort to understand the impact of their work, the Bethesda team have identified several inter-related principles which are core to the success of their approach. First, being identified as neutral is important to avoid politicising the work, which has been a prominent issue in this outbreak. Many families report feeling safer engaging with Bethesda staff as they are not connected with the Ebola response and are already accepted as part of their community. This allows families to share and express themselves knowing that it won’t bring ‘trouble’. Related to this is the need to adopt a light-touch approach, being humble and sitting with people, without being linked with the expensive cars and equipment associated with the response. Not only does this draw less attention and protect the privacy of families, it also sends a message that Bethesda are there only to be with them, without other intentions.

Bethesda’s approach depends on localised, cultural expertise, being familiar with the cultural customs of the area, while having technical support expertise. Families planted trees at the culmination of the process, as part of the memorialisation ceremony. In Nande culture, a ‘mahero’ is considered a secret place, a place of honour for those who have died. A tree planted to represent ‘mahero’ is believed to have both cultural and spiritual meaning, which has been central to the significance of the tree-planting ceremony. Bethesda also put emphasis on showing they care by spending time with families over a period of weeks without interruption, empathising with their pain and grief. Rather than focusing purely on rituals, as was the case in the West Africa outbreak, the Bethesda process aims to gives space for genuine mourning.

The approach facilitates the supportive power of family and community: grieving families communicate a sense of togetherness as coping mechanisms are shared, new meanings are co-created and the foundation for ongoing practical and emotional support is laid. The sessions become a unique place to reconstruct, even on a small scale, the needed sense of community: ‘Our life is also like this tree. As human beings we need the same things the tree needs in order to grow. I have learned the importance of being connected to the community around me’. Ultimately, Bethesda let the bereaved lead the process. This involves choosing to participate, deciding where the family meetings should take place and what the ceremony of memorialisation will include – where, when and how it will happen, what food will be shared and what type of tree or flower will be planted.

The main challenge has been limited human and financial resources. When additional families presented themselves for sessions the Bethesda team felt ‘selecting and unloving’ when they could not include them. The team also could not offer longer-term support for family members with more extensive needs. The heavy emotional toll of the programme has meant that each facilitator requires a weekly debriefing session with a supervisor, and at least one day a week for rest and self-care.

Conclusion and recommendations

In current and future Ebola outbreaks, community-led memorialisation processes should be supported by government or other actors, to show solidarity with and compassion for families of Ebola victims, and be a positive action for the wider community. These actions should be chosen by affected families themselves; for example, Bethesda-supported families suggested that processes could also include the construction of graves, with a cement or tile grave marker, as is customary within a year of a person’s death. Where opportunities lie out-side of formal response mechanisms, especially within grassroots structures, these must be encouraged and supported. Broader integration of this type of approach by other actors in the response would help overcome the challenge of limited human and financial resources.

The core principles identified through Bethesda’s process offer powerful lessons for all sectors of an Ebola response. Identifying as neutral; humility; cultural expertise; facilitating the supportive power of family and letting communities lead – all should be taken as standard considerations for a response that is effective and responsible.

Theresa Jones is a Senior Associate with Anthrologica. Noé Kasali is founder and director of Bethesda Counselling Centre in Beni. Olivia Tulloch is CEO at Anthrologica and coordinates its work for the Social Science and Humanitarian Action Platform.