Prioritising psychosocial support for people affected by Ebola in Sierra Leone

Introduction

The Ebola crisis seriously impacted the psychosocial wellbeing of the population of Sierra Leone. Findings from participatory research  Trócaire and University College Cork, Ireland along with national partner NGOs conducted participatory research in hotspot communities during the Ebola outbreak. The national partners were the Centre for Democracy and Human Rights, the Access to Justice Law Centre and the Justice and Peace Commission. show that those directly affected experience multiple barriers to social integration, including relational difficulties, complex grief and stress. The research also documents how people affected by Ebola adapted in the face of adversity through a wide range of culturally embedded coping strategies. In order to effectively support people affected by Ebola in their recoveries, it is essential that we pay close attention to – and avoid undermining – existing patterns of resilience in communities.

Generally speaking, mental health and psychosocial support for those affected by humanitarian emergencies should focus on resources and strengths, build on local existing capacities and be delivered through existing structures and services. From the onset of an emergency, linked, multi-level supports should be made available, as illustrated in the intervention pyramid (see Figure 1). The first layer, basic security and services, represents the emergency response required to protect the psychosocial health of the entire population.

A smaller subset of the population affected by crises will be able to maintain their psychosocial wellbeing if they receive help in accessing community and family supports, the pyramid’s second layer, which are often disrupted by crises or emergencies. These supports might include family tracing and reunification, memorials, parenting groups and the activation of social networks, such as women’s groups and youth clubs.

Focused, non-specialized supports, such as Psychosocial First Aid (PFA) and basic mental health care by primary health workers, comprise the pyramid’s third layer and are necessary for the still smaller number of people who require additional and more focused individual, family or group interventions by trained and supervised workers. For example, survivors of gender-based violence might need a mixture of emotional and livelihood support from community workers.

Global expert guidance indicates that 10% – 15% of affected people will require specialized services, the pyramid’s final layer, such as professional psychological or psychiatric support.

Recent analysis Tol, W.A., Barbui, C., Gallappatti, A., Silove, D., Betancourt, T.S., Souza, R., Golaz, A., van Ommerman, M. (2011). Mental health and psychosocial support in humanitarian settings: linking practice and research. The Lancet, 378(9802), 1581-1591  found that although the vast majority of mental health and psychosocial support programming in humanitarian settings focuses on strengthening family and community based supports (the lower levels of the pyramid Inter-Agency Standing Committee (IASC) (2007). IASC Guidelines on Mental Health and Psychosocial Support in Emergency Settings. IASC: Geneva. ), existing research focuses almost exclusively on the top layer of specialized clinical mental health services. The risk of causing harm by continuing to implement untested interventions is significant. The lack of a solid evidence base is one factor in the continued implementation of ineffective programming, for example psychological debriefing, which has been found to exacerbate symptoms of distress. IASC, 2007; Szumilas, M., Wei, Y., & Kutcher, S. (2010). Psychological debriefing in schools. CMAJ : Canadian Medical Association Journal, 182(9), 883–884.

Why is psychosocial support needed in a post-Ebola context?

As of November 7, 2015, there are a total of 4,051 Ebola survivors in Sierra Leone NERC. (2015). EVD Daily MoHS Update. Available at: http://www.nerc.sl/. . 3,589 people have died leaving bereaved families, many of whom experienced multiple bereavements. Epidemiological calculations estimate that in Sierra Leone there are 3,300 orphans as a result of Ebola, with over 100 orphans having lost both parents Popova, A. & Evans, D.K. (2015). Orphans and Ebola; Estimating the secondary impact of a public health crisis. Policy Research Working Paper, 7196. World Bank Group, February 2015 .

Significant efforts have led to the eradication of the disease in Sierra Leone. However, the impacts of Ebola will continue to be felt and psychosocial support has a crucial role to play mitigating them, as we move past the end of the outbreak. The long-term health needs of those who have been impacted by Ebola, including distress, anxiety, loss, grief, shame and suffering, must be addressed.

The Ebola outbreak has resulted in a wide range of psychosocial protection concerns experienced at the individual, family, community and societal levels. Over the course of the outbreak, normally protective supports such as school, work, basic preventative health, community groups and daily routines were disrupted while pre-existing problems of social injustice and inequality were amplified.

The research was conducted from March to June 2015 in Kambia, Port Loko, Bombali and Western Area Rural District. In each district, two-person teams made up of staff trained in psychosocial first aid (who acted as a facilitator) and a local researcher (who recorded, translated and transcribed the material) engaged in participatory research with women, men, girls and boys directly affected by Ebola.

Interviews and group sessions were conducted in Temne, Limba or Krio and later transcribed into English. Children participated in at least three small group sessions over a period of six weeks and these groups were composed of similarly aged children of the same sex. Three participatory methods – storytelling, timelines and social mapping – were used to help participants discuss their experience of social integration and how they coped with difficulties after their bereavement or returning to the community from the treatment centre. Grounded Theory Analysis was the analytic method used, this method involves line-by-line coding of data to generate a category system to account for the data Charmaz, K (2006). Constructing grounded theory: A practical guide through qualitative analysis. New York: Sage Publications. .

There were 42 adult participants:

• 60% women, 40% men
• 88% bereaved (51% women, 49% men)
• 40% survivors (53% women, 47% men)
• 33% guardians for children orphaned by Ebola (79 % women, 21% men )

There were an additional 12 key informants: 50% women, 50% men.

There were 69 child participants (under 18)

• Average age: 11 years, 7 months
• 52% girls (average age: 10 years, 11 months), 48% boys (10 years, 9 months).

Child participants were affected by Ebola in the following ways:

• 60% orphaned (17% of the total lost one parent, 43% lost two parents)
• 20% survivors
• 30% quarantined

Facilitators invited participants from their psychosocial support case load in affected communities and so had existing relationships with participants and were in a position to provide ongoing support and referral where necessary. Written informed consent was obtained from all participants and in addition parents or guardians of child participants also gave their consent. Voluntariness, the right to withdraw at any time, data protection, risks of participation, confidentiality and the limits of confidentiality were discussed with participants and any questions or concerns were addressed. Psychosocial referral pathways were in place and used.

As would be expected in any emergency, participants and key informants reported a range of psychosocial difficulties associated with, or amplified by, the emergency and the response.

Many of the people interviewed reported experiences of complex grief associated with multiple losses. The specific context of Ebola and the problems that come with it (such as the fear of infection, being unable to care for loved ones, the shock caused by transportation to treatment centres and witnessing deaths and culturally inappropriate burial practices) complicated and, in some cases, heightened people’s experiences of bereavement and loss.

Stigma and discrimination affecting adult survivors and bereaved family members are both complex phenomena. Interpersonal conflicts tended to be rooted in distrust and blame associated with specific events during the emergency rather than a person’s general status as a ‘survivor.’ In a number of cases, a person or family may blame a friend or neighbour for bringing Ebola to the community, infecting a loved one or calling 117 to report a suspected Ebola case. This breakdown in relationships is more complex than the concept of ‘stigma’ would suggest and requires a different kind of response. Rather than community-level sensitization on Ebola, more focused approaches are needed based on conflict resolution and mediation methods so that trust and relationships can be rebuilt.

While adults tended to report that children did not experience discrimination, children confirmed that they did. A considerable proportion of children who survived Ebola or lost parents reported that they felt isolated in their peer groups and tended to socialize with other children who had been affected by Ebola. In a number of communities, children reported deterioration in their relationships once school started, which highlights the need for continued interventions in schools and peer group settings.

Orphaned children and their guardians also reported challenges in adapting to new family structures. As many of the interviewed people came from Ebola hotspot communities, many had faced multiple bereavements. Guardians, 79% of whom were women, had often lost a number of family members to Ebola and were caring for between one and ten additional children. Some children and their guardians reported shortages of food, bedding and funds for school fees. Some orphaned children felt they were treated differently compared to biological children (for example, by receiving excessive house and farm work or not being allowed to return to school). Guardians expressed difficulties in providing for children economically and emotionally, particularly as children were grieving and in some cases were distressed, withdrawn or exhibiting mood or emotional difficulties. Ongoing family-focused support, with special focus on guardians and orphans, is required to support the development of health-sustaining relationships and improved psychosocial wellbeing.

Psychosocial difficulties associated with humanitarian aid and the Ebola response:

Health and social workers noted that explicitly targeting survivors for support causes resentment and can hinder reintegration. Global evidence (see for example, IASC, 2007) supports service provision on the basis of identified needs rather than crude categories such as “Ebola survivors” or “Ebola orphans”. Specialized support should also be provided for workers, who can experience distress as a result of aiding people affected by Ebola.

Severe distress has been experienced by families who remain unaware of the status or whereabouts of their loved ones. In a number of cases (over twenty in the Northern Region alone) parents have not received information regarding the whereabouts of their children who were taken by ambulance for treatment. Many of these cases originate in October, November and December 2014. Parents have in some cases received conflicting information from different service providers and do not know whether their children are still alive or have died.

Spiritual distress and harm was caused by burial practices, particularly during the first six months of the outbreak. Children reported witnessing disrespectful or innapprpriate burial practices and in some cases these experiences continued to cause them severe distress.

The participatory research sessions focused primarily on documenting the practical ways that girls, boys, women and men responded to these difficulties and brought about processes of resilience.

Resources and strategies people use to build resilience

The project documents how people attempt to respond to adversity in a very practical sense, examining daily activity at family and community level. Girls, boys, women and men reported using resources to bring about a sense of safety, calming, self-efficacy, community efficacy, connectedness and hope (Hobfoll et al., 2007) in response to these difficulties.

Child and adult participants attempted to bring about a sense of safety during the outbreak by taking control of infection control, by practising recommended infection control measures (hand-washing, avoiding body contact etc.) and also by engaging in religious, spiritual or cultural activities that they believed reduced the risk of infection. Cultural narratives of risk are central to health and it is vitally important that they be taken seriously by those attempting to control the spread of communicable diseases.

Several children and their guardians reported using medications (sleeping tablets, Paracetamol or benzodiazepines) to calm themselves when they became overwhelmed due to their loss. Although medication use to respond to shocks is not unusual in Sierra Leone, both children and adults reported unprescribed medication use several months after their bereavement which would be unusual in this context. This indicates an unmet need for support with calming, relaxation and sleep. Future programming may need to incorporate relaxation techniques (breathing exercises, traditional dance, music), sleep hygiene, practical skills and stress management for dealing with acute anxiety and stress. More targeted approaches such as grief and bereavement counselling or economic support will also be necessary in some cases.

When asked what they did to feel better when things were difficult, many participants reported activities that involved supporting others, for example one boy who had survived Ebola and lost his parents to the disease talked about the sense of wellbeing and purpose he derived from volunteering to assist elders in his community. It is essential that future programming is developed in a highly participatory way to avoid undermining these important processes of self-efficacy and community efficacy.

Using social mapping, children and adults mapped their relationships and how they had changed during the outbreak. Those boys and girls who were isolated by their peers reported their attempts to repair and restore their friendships, though these efforts were not always successful. Women and men who had guardians of children reported their attempts to create a safe, secure family context, in the context of real difficulty in providing emotional support when their own resources were depleted by multiple losses.

Survivors and bereaved people reported turning to their close family members and neighbours to give them a sense of hope in the context of great difficulty. Teenage boys in one research group that met over a number of months began to sing traditional songs and pray together in their sessions, bringing about a sense of coherence and optimism.

What is needed for the development of successful psychosocial interventions?

Long-term and appropriately resourced psychosocial service provision is required to respond to locally identified needs. Training, supervision and resourcing of national community-based staff is needed. Short-term project-based funding is not sufficient to meet the psychosocial needs identified. Without adequate support, actions to lessen the impact of the crisis on people’s lives, livelihoods and long-term wellbeing will be compromised. Appropriate, community-based programming will prevent problems escalating and straining clinical settings.

Psychosocial interventions should draw on existing familial, social and cultural systems in facilitating psychosocial recovery. Effective interventions will mimic naturally occurring supports and utilize local resources and strategies that foster wellbeing and bring about resilience at family and community levels. This can involve linking to existing family and community support, focused, non-specialized supports and specialized services. Strong referral mechanisms within and between intervention layers are essential. Furthermore, this approach should be intersectoral, making sure healthcare workers, teachers and child protection workers are trained in psychosocial practices.

Following the research, an inter-agency working group was established to implement the recommendations. The working group is currently engaged in a process of developing socio-culturally adapted, gender sensitive, participatory community based programs which can be integrated into existing structures and services in Sierra Leone. This working group is comprised of Trócaire, International Medical Corps, Plan International, Save the Children, Medicos del Mundo, CAPS Sierra Leone, International Organization for Migration, Mental Health Coalition, Enabling Access and UNICEF. It was established in June 2015 under the Child Protection and Psychosocial Support Pillar of the National Ebola Response Centre. The aim of this long-term project is to more effectively support families and communities in Sierra Leone to mobilize processes of resilience in order to respond adaptively to future crises and shocks.

Dr. Fiona Shanahan is a psychologist who specialises in psychosocial interventions and transitional justice processes in post conflict and humanitarian settings. Réiseal Ni Chéilleachair is Trócaire’s Humanitarian Policy Adviser, based in Ireland.

This article was written in collaboration with:

• Florie de Jager Meezenbroek, Country Director of Trócaire Sierra Leone.
• Sabrina Brett, an independent consultant based in Ireland and was Programme Manager with Trócaire Sierra Leone at the time of the research.
• Ella MacFoy, Gender Equality Officer with Trócaire Sierra Leone.
• Rebecca Grogan, Humanitarian Response Officer with Trócaire Sierra Leone.
• Michael Solis, Programme Manager with Trócaire Sierra Leone.