Psychosocial support for Ebola survivors in Liberia: towards individual and community recovery
The epidemic of Ebola in West Africa has severely impacted Liberia, with thousands dead and even more affected by the disease, directly or indirectly. As survivors return to their communities after successfully fighting the virus, it is time for all to learn to live together again and come over the trauma of months of fear and heavy burden of losses.
The proposed program aims at facilitating the reintegration of Ebola survivors in their communities as they face stigma and continued psychological distress from their experience and losses. In doing so, the program will build upon existing communities’ capacities and systems in order to strengthen their resilience and increase sustainability. Planned activities include support of survivors for their livelihood and basic needs, community sensitization and participation, facilitation of family dialogue and creation of support groups. Partnerships with health and school services will also be put in place to address stigma and ensure identification of psychosocial needs.
To implement the activities, the program will work through psychosocial workers recruited directly in the community where activities are implemented in order to promote community ownership and long-term impact.
Ebola virus disease is a severe illness, with high fatality rate ranging from 25 to 90% in past outbreaks. Virus is transmitted to humans from wild animals and human-to-human transmission occurs through contacts with bodily fluids of a sick person (1). From March 2014 to June 2016, the West Africa region has been subject to the largest known Ebola epidemic in history: since the identification of the first case on March 17, 2014 in Guinea, a total of 28,616 Ebola cases have been reported, as well as 11,310 deaths (2).
Table 1: Geographical distribution of new and confirmed cases – 30 March 2016 – WHO
In Liberia, a West African country of 4.5 million inhabitants sharing borders with Sierra Leone, Guinea and Ivory Coast, the first Ebola cases were reported late March 2014 in Lofa County at the border of Guinea, before spreading to all remaining 14 counties. As the number of cases was growing in the summer of 2014, hospital beds were not enough and patients seeking care were sometimes forced to remain at home despite the risk of contagion, creating a situation of near-chaos and great fear (3).
With international support and partners, the government of Liberia managed to build its capacity to test, treat and trace contacts of Ebola patients and WHO finally declared Liberia free of Ebola virus transmission on May 9, 2015. The country subsequently experienced two clusters of respectively six and three Ebola cases in June and November 2015 and was declared free of transmission again on respectively September 3, 2015 and on January 14, 2016 (2).
The toll to the disease has been heavy with a total of 10,666 cases and 4,806 deaths, meaning 5,860 survivors need now to be taken care of while Ebola-affected communities and families are many (4).
2. Initial needs assessment
Ebola affects individuals and communities in a number of different ways. At the individual level, patients with the Ebola virus face, during the infection, the fear of death and of transmitting the infection to their close relatives. If and when cured, survivors often have to face the reality of the loss of one or more family members and friends to the virus together with feelings of shame to have transmitted the disease (5, 6). In addition, Ebola survivors suffer long-term physical sequelae, some of whom can be debilitating and impede them from resuming work, thus impacting further their reintegration into normal life. The most common symptoms reported are musculoskeletal pain, headache and ocular problems (7, 8).
Survivors may experience stigma and rejection when returning in their communities after treatment. In a Knowledge, Attitude and Practice survey (“KAP survey”) about Ebola in Liberia undertaken in December 2014, while 91% of the people interviewed claimed they would welcome survivors back in the villages, one out of three still emphasized that they would fear getting Ebola from a survivor and would avoid touching or hugging them. This shows the ambiguity and persisting stigma, coming mostly from lack of adequate information (9)
At the community level, the fear of the disease together with the loss of trust in health services impact the perception of the future (5). Life as a community was disrupted in Liberia as physical contacts were avoided due to risk of infection, gatherings forbidden and usual practice such as traditional burials impossible to perform (9). The loss of community members and parallel loosening of social support mechanisms traditionally in place lead to an increase in the number of households affected. In particular, children who lost their caregivers may suffer from stigma and left alone, as the extended family fears for its safety (5).
The KAP survey highlighted that knowledge was higher in the urban than in the rural areas (9). Based on this and the analysis of incidence per county, the proposed program will therefore focus on the three most affected rural counties, Nimba, Bong and Lofa, as well as on Montserrado county, which includes the capital Monrovia and accounted for the highest number of Ebola cases.
The target groups for the program are survivors of Ebola survivors (adults and children). Households of children orphaned due to Ebola were initially considered as a target group but, after further analysis of programs implemented by partners on the ground, referral to child protection agencies and partners was considered the most effective approach to ensure adequate care for them.
3. Proposed approach
The objectives of the proposed intervention are to:
- Facilitate the reintegration in the community of survivors of Ebola
- Improve their well-being and address their psychosocial needs
To achieve these objectives, needs have been analyzed, using the intervention pyramid for mental health in emergency situations as described in the Inter-Agency Standing Committee Guidelines on Mental Health and Psycho-social support in emergency settings (11).
- Basic needs and security: survivors need to have access to decent housing, appropriate quality food and care for their medical issues, in a dignified manner.
- Restoring family and community links: in a context where, in most cases, survivors will also have to face the grief of loss of family members, ensuring that social supports are restored and stigma in the community reduced as much as possible, is key to ensure their social reintegration.
- Focused non-specialized support: survivors will need dedicated structures to share their experiences and alleviate their psychological distress. Targeted support for livelihood will also be put in place to support sautonomy.
- Specialized care: mechanisms need to be in place to ensure that survivors who suffer from severe mental health disorders are referred to adequate specialized services.
4. Detailed approach
Participation of those affected is key, at all stages of the program, from design, implementation to evaluation. While the approach detailed below is based on our understanding so far of the needs based on existing research, our first action on the ground will be to undertake a more detailed participatory needs assessment at the onset of the intervention, through interviews with Ebola survivors to confirm what their main needs and concerns are. If priorities were to differ significantly from what is detailed below, the project would require to be amended accordingly.
- Ensuring basic needs are met
As survivors will have lost most of their belongings due to infection control measures (5), the program will provide survivors with a basic set of items needed for everyday life, including bed linen, clothes, sanitary products, cooking utensils and food items. Program staff will identify whether they have access to decent shelter as well as a regular source of income/food provision. If not, achievement of this objective will be sought, through the other interventions: when helping in restoring family links, the program will help the Ebola survivor explore the opportunity to live with his family while a specific activity will focus on creating livelihood opportunities. Special attention will be paid to girls and women, disabled and elderly due to their increased vulnerability.
- Ensure the livelihood of Ebola survivors
In cases where an Ebola survivor cannot resume his previous work due to physical complications of the disease, the program staff will work with him/her so that he/she can identify a way to earn a living and the skills needed to do so. The program will then provide funds required for training and seed capital to start the activity.
As often as possible, in order not to do involuntary harm by supporting only a handful number of people when most households have suffered economic impact of some form due to Ebola, a local microfinance scheme will be put in place in the community (or a partnership with a microfinance institution implemented) so that not only Ebola survivors benefit from the intervention but the whole community (22). This will be decided by the community itself.
Regarding the most vulnerable, particularly disabled people and elderly, who may not be able to work any more, the program staff will work with the community to identify when possible and restore support mechanisms previously in place to support them.
- Reduction of stigma through increased community information and sensitization
Psychosocial workers employed by the program will meet with community leaders (traditional and religious) to discuss issues surrounding the return and reintegration in the community of Ebola survivors. To show their support and promote community ownership, community leaders should convene themselves the community sensitization sessions on Ebola in order to maximize participation.
Community sensitization sessions will be held (number depending on the community size), to increase awareness and provide quality information on Ebola, with the main take-away message being that a survivor is not contagious anymore and should not be feared (though information on low risks linked to semen and breastmilk will be provided (14)). Dialogue and participatory games will be used to ensure issues of concern are identified and addressed.
Survivors will be engaged in these sessions in order to restore dialogue and involve them back in the community. This is an important step to ensure that the community adheres to the project and does not feel discriminated not to benefit from certain types of support survivors may receive.
- Restoring family and community links
Rejection by extended family or by the community has been underlined as one of the major factors of stress post-infection and has been generally linked to undue fear of contagion (5,6). Specific action should therefore be targeted at restoring the links between survivors and their families. To do so, psychosocial workers employed by the program will support survivors in establishing communication with their families: this mediation, together with increased information provision, shall help overcome fears and allow families to reunite.
In addition, as no traditional burial could be held due to the risk of infection, the opportunity of organizing a ceremony in replacement will be proposed to members of families most affected by Ebola in order for the family and community to grieve together and honor the memory of the dead (11). The program will finance costs linked to this ceremony as and when necessary.
- Creation of support groups for Ebola survivors and safe spaces for children
Ebola survivors experience feelings of shame, guilt and fear, which may lead to psychological distress and loss of hope for the future (5). Sharing difficulties and experiences with other survivors can reduce feelings of loneliness, lower the distress and help envision the future in a more positive way (15). The program will identify Ebola survivors able to lead the process and support the creation of the groups. As much as possible, gathering places should be made available by the community. When impossible, the program will finance the rental of a safe space for support groups to meet. Those groups will be open to the participation of all individuals affected by Ebola, whether directly or indirectly.
Children who have survived Ebola or whose lives have been deeply affected by Ebola are also facing significant distress. Child-friendly spaces (“CFS”) promote their wellbeing and capacity to overcome the situation, while providing psychosocial support (16). As researchers still have to collect data regarding the impact of CFS (17), the program nevertheless includes a CFS component for children recovering from Ebola or having lost their parents to Ebola, as it is critical for them to develop self-expression and resilience. A psychosocial worker will be supervising the activities of the CFS in order to allow for constructive dialogue and to identify situations of distress requiring individual follow-up.
- Partnership with health services for post-Ebola medical care, psychological support, and referral to specialized services
Health workers have paid a high toll to the Ebola epidemic in Liberia (18) and remain on the forefront of the clinical care Ebola survivors need. Health workers, including community health workers, will be trained in post-Ebola medical care and psychological first aid so they can address adequately the survivor’s challenges, particularly psychological difficulties. Individuals identified with severe mental health issues will be referred to specialized services, which start now to be available in each county though in much too limited capacity (21). When necessary, the program may source external mental health professionals to work on an assignment basis. Tight coordination with the Ministry of Health and Social Welfare will be put in place to ensure lack of duplication and maximization of resources available.
- Partnership with schools for an access to education free of stigma
Fear of children getting Ebola from their classmates was mentioned in the KAP survey undertaken in Liberia in March 2015 (9). As access to education is among the key-aspects of a “normal life” for a child (16), the program will aim at ensuring that children affected by Ebola have access to school and can learn in an environment free of stigma. Schoolteachers will be trained in psychological first aid and will be regularly visited by a psychosocial worker employed by the program to discuss school integration of Ebola children survivors, issues faced and support required.
- Caring for Ebola-related orphans
Upon identifying households of children orphaned by Ebola, the program staff will contact child protection agencies in charge of orphans ‘care in order not to duplicate activities and ensure adequate coordination. Child protection agencies have the mandate and experience to ensure that orphans are, when possible, reunited with close or extended family and to provide them with basic support needed, such as adequate shelter, nutrition, education and health care. The program staff will follow-up to ensure that orphans identified by the program are adequately being taken care of.
5. Monitoring and Evaluation
A Monitoring and Evaluation framework is essential to measure the impact, outcome and outputs of a proposed program, based on targets set before the program starts (19).
- Planning for evaluation and collection of baseline data
The program will be implemented in 4 counties of Liberia over a period of two years. Comparable communities in counties in which the program will be rolled-out during the second year will be selected to form the comparison group to a group of selected communities receiving the interventions during the first year. Baseline data will be collected in both the control and comparison groups before the start of the activities as well as after one year of activities to measure the impact over this one-year period.
To collect the data, respondents will be sampled randomly in both groups. Survey tools will be designed and validated at community level for their appropriateness to the context and culture, and focus groups as well as individual interviews will be undertaken.
At this point, indicators detailed below have been selected to measure the expected results of the program against targets, however they may be revised following the interviews and collection of baseline data. As an example, if a specific event or situation is identified as being crucial for somebody to be considered part of the community, then this may be adopted as a measurement for reintegration in the community (20).
- Proposed monitoring and evaluation framework
The following framework is proposed to monitor the program:
|Skills and knowledge||Emotional well-being||Social well-being|
|Impact||Increased capacity to self-sustain (measured by % of survivors surveyed reporting financial independence)||Increased optimism for the future (measured by % of survivors surveyed reporting feelings of hope for the future)||Decrease of Ebola-related stigma in the community (measured by % of survivors reporting having suffered from stigma/discrimination in the month preceding the survey)|
|Outcome||Basic needs of survivors are met (measured by % of survivors reporting adequate access to shelter, food, education and health)||Decrease in anxiety and psychological distress among survivors (measured by % of survivors reporting absence of troubled sleep in the week preceding the survey)||Increased knowledge in the community about Ebola virus and issues faced survivors (measured by % of community members who would fear hugging or sharing a meal with an Ebola survivor)|
|Output||Support to survivors for livelihood Initial provision of basic package of goods||Support groups for Ebola survivors operational and meeting regularly Safe spaces for children operational Training of teachers and health workers in PFA||Community sensitization sessions held Family dialogues facilitated Burial replacement rituals organized|
Numerical targets for indicators measuring outputs will be determined upon finalization of the site planning and budget. A system for regular output results collection will be set to allow for informed and timely monitoring and project management.
Quantified targets for outcome and impact indicators will be defined once the baseline data is available.
All data collected will be disaggregated by gender, age group and will mention disability, in order for the program management team to identify early on potential gaps in reaching the most vulnerable groups.
Annex 1 – References
1. World Health Organization – Ebola Fact Sheet – Available online at http://www.who.int/mediacentre/factsheets/fs103/en/ – Accessed on July 5, 2016
2. US Center for Disease Control – Case count – Available online at http://www.cdc.gov/vhf/ebola/outbreaks/2014-west-africa/case-counts.html – Accessed on July 5, 2016
3. World Health Organization – Ebola – Liberia – One year into the Ebola epidemic – Available online at http://www.who.int/csr/disease/ebola/one-year-report/liberia/en/ – Accessed on July 5, 2016
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6. De Roo A, et al -Survey among survivors of the 1995 Ebola epidemic in Kikwit, Democratic Republic of Congo: their feelings and experiences. Trop Med Int Health 1998; 3:883–5.
7. Janet T. Scott et al – Post-Ebola Syndrome, Sierra Leone – Emerging Infectious Diseases • www.cdc.gov/eid • Vol. 22, No. 4, April 2016 641
8. Tiffany et al – Ebola Virus Disease Complications as Experienced by Survivors in Sierra Leone – Clin Infect Dis. 2016 Jun 1;62(11):1360-6. doi: 10.1093/cid/ciw158. Epub 2016 Mar 21.
9. Ministry of Health and Social Welfare of Liberia – National Knowledge, Attitudes and Practices (KAP) Study on Ebola Virus Disease in Liberia, March 2015 – Available online at http://www.unicef.org/cbsc/files/KAP-Study-Liberia-March-2015.pdf – Accessed on 5 July, 2016
10. Lee-Kwan et al – Support Services for Survivors of Ebola Virus Disease, Sierra Leone, 2014 – Available online at : https://www.cdc.gov/mmwr/preview/mmwrhtml/ mm6350a6.htm– Accessed on July 5, 2016
11. World Health Organization – Psychological first aid during Ebola virus disease outbreaks. Geneva: World Health Organization; 2014. Available online at: http://www.who.int/ mental health /emergencies/ psychological_first_aid_ebola [cited 2015 Dec 16]. – Accessed on 5 July, 2016
12. Inter-Agency Standing Committee – Inter-Agency Standard Guidelines on mental health and psychosocial support in emergency settings – Available online at https://interagencystandingcommittee.org/system/files/legacy_files/Guidelines%20IA
SC%20Mental%20Health%20Psychosocial%20%28with%20index%29.pdf – Accessed on 7 July, 2016
13. International Federation of Red Cross Red Crescent Societies – Briefing note – Psychosocial support during ebola outbreaks, International Federation of Red Cross Red Crescent Societies Reference Centre for Psychosocial Support, August 2014 – Available at: http://pscentre.org/wp-content/uploads/20140814Ebola-briefing-paper-on-psychosocial-support.pdf – Accessed on 5 July, 2016
14. US Center for Disease Control – Review of Human to Human transmission of Ebola – Available online at:http://www.cdc.gov/vhf/ebola/transmission/human-transmission.html – Accessed on 5 July, 2016
15. Kyrouz et al – A review of research on the effectiveness of self-help mutual aid groups – Chapter 5, American Self-Help Clearinghouse Self-Help Group Sourcebook – Available online at: https://www.researchgate.net/publication/238074993_A_Review_of_Research_on_the_Effectiveness_of_Self-Help_Mutual_Aid_Groups Accessed on 5 July, 2016
16. Michael Wessells and Kathleen Kostelny – Child Friendly Spaces: Toward a Grounded, Community-Based Approach for Strengthening Child Protection Practice in Humanitarian Crises – Child Abuse & Neglect 37S (2013) 29–40
17. Ager and al – Child friendly spaces: a systematic review of the current evidence base on outcomes and impact – Intervention 2013, Volume 11, Number 2, Page 133 – 147
18. World Health 0rganization – Preliminary report – Health worker Ebola infections in Guinea, Liberia and Sierra Leone. Available online at: http://apps.who.int/iris/bitstream/10665/171823/1/ WHO_EVD_SDS_REPORT_2015.1_eng.pdf?ua=1&ua=1 – Accessed on July 6, 2016
19. Ager,A., Ager,W., Stavrou,V.&Boothby,N. (2011a). Inter-Agency Guide to the Evaluation of Psychosocial programing in Emergencies. NewYork: UNICEF. Available online at: http://www.unicef.org/protection/files/Inter-AgencyGuidePSS.pdf – Accessed on July 6, 2016
20. Ager et al – Sealing the Past, Facing the Future – An evaluation of a Program to Support the Reintegration of Girls and Young Women Formerly Associated with Armed Groups and Forces in Sierra Leone – Girlhood Studies 3(1), Summer 2010: 70–93 Berghahn Journals
21. Carter Center (2015) – Carter Center Helps Bolster Liberia’s Mental Health Workforce Following Ebola Epidemic – Available online at: https://www.cartercenter.org/news/pr/ mental-health-liberia-082715.html – Accessed on July 11, 2016
22. Jeff Tyson (2015) – Inside Development – Ebola response- Microfinance programs: West Africa’s next task force? Devex. Available online at: https://www.devex.com/news/microfinance-programs-west-africa-s-next-task-force-85358 – Accessed on July 7, 2016
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