This technical brief provides an overview of the results from the USAID-funded Ebola Transmission Prevention & Survivor Services (ETP&SS) program’s baseline and endline assessments. The surveys were conducted with the survivor community to identify program targets, understand the broader context in which the program was operating, and assess program successes and changes over time in the survivor experience. These assessments focus on understanding survivors’ experiences when interacting with the Liberian health care system and their knowledge and perceptions of survivor representative bodies.
ETP&SS Staff carrying out assessments with beneficiaries
The Ebola Transmission Prevention & Survivor Services (ETP&SS)1 program was designed by USAID as a two-year (2016–2018) initiative aimed at supporting the implementation of selected components of the Ministry of Health’s Ebola Survivors Care and Support National Policy, supporting the strengthening of clinical services available to survivors, reducing stigma and other barriers for survivors’ access to health care services, and reducing the risk of Ebola transmission from survivors to others.
The assessments were conducted in the four ETP&SS program target counties (Montserrado, Margibi, Lofa, and Bong) using a mixed-methods format, with quantitative surveys of the survivor population (age 18 years and over) and qualitative interviews with key informants from the health sector and survivor organizations. The National Ebola Survivors Network of Liberia assisted in tracking and mobilizing the survivor community.
Data collection was conducted in February 2017 for the baseline and May 2018 for the endline. Participants were selected through simple random samples drawn from existing survivor listings, stratified by administrative district and gender. In total, 649 survivors (297 males and 352 females) were surveyed.
Findings from the baseline assessment informed ETP&SS program design and provided evidence for the program indicators, including the need for strategies to increase engagement with clinical care services, refine referral pathways, reduce stigma, improve access to mental health services, and strengthening of survivor advocacy bodies.
The results of the endline assessment provided information on if and how the survivor experience has changed over time. While direct attribution to program activities is not possible due to other, primarily non-EVD focused public health programming conducted during the program’s timeline, assessment indicators were matched to program activities as closely as possible.
Seeking health care: The assessments confirmed that survivors have been seeking primary treatment from health facilities when they first get sick, with more than 90 percent of both baseline and endline respondents reporting that they had received treatment at a health facility within the past six months (92.3% and 91.7%, respectively). While initial attendance is high, one issue identified during the baseline assessment was poor attendance at referral appointments (referrals to a higher service level), with only 60.3% of respondents reporting that they attended these appointments. To address this attrition trend, several program activities sought to promote engagement with higher level services when needed, including the rollout of clinician trainings with specific modules focused on referral protocols for survivors, with the aim of coordinating and strengthening the referral mechanisms for survivor patients. Between baseline and endline, there was a 35% increase (from 60.3% to 81.8%) in attendance at referral appointments.
Barriers to care and stigma at health facilities: In both the baseline and endline, the primary barriers to health care reported by respondents were transportation costs, stock outs, distance to health facilities, and wait times. Figure 1 shows that cost of treatment was another major barrier, although this differed considerably between baseline and endline (44.6% and19.3%, respectively, a 57% reduction). While not specific to the survivor population, these barriers can be insurmountable in the poorest countries in the world where transportation infrastructure is extremely limited.
Figure 1. % reporting as barrier to care
To increase access and decrease costs for survivors, the program provided free, comprehensive care for survivors at two faith-based hospitals, reimbursed transportation to all health facilities (primary, secondary, and to specialized care in survivors’ home counties or Monrovia), supported public facilities with renovations, distributed essential equipment and medications, and coordinated survivor-specific specialty services2 through sub-specialist rotations at selected county hospitals.
Stigma was identified as a barrier to care engagement for EVD survivors at baseline. Several program activities concentrated on stigma reduction, including an EVD survivor clinical care guidelines training which reached 464 mid-level providers from 75 health facilities in 11 EVD-affected counties. Over the life of the program, there was a 76% reduction in experience of EVD-related stigma at health facilities, with 33.1% of baseline respondents claiming two or more occurrences of stigmatization by health facility staff in the past six months compared to 7.7% at endline (shown in Figure 2). Similarly, those reporting delaying or avoiding seeking care due to EVD-related stigma declined by 60% between baseline and endline.
Figure 2. % of individuals reporting stigma at health facilities
Mental health support: In the 12 months before each assessment, around half of respondents had received some form of mental health support or counseling. While this was a positive finding, there is clearly still room for improvement in connecting survivors with mental health care. This need is particularly salient in the context of two additional mental health specific assessments3 that were conducted during the endline. One-fifth (20.1%) of respondents met the diagnostic criteria for depressive disorder and 14.8% met the score cut-point for generalized anxiety disorder, indicating a clear need for ongoing mental health services among the survivor population.
A major barrier to accessing mental health care in Liberia is the lack of trained mental health workers. In response to this, and in collaboration with the Phebe School of Nursing, the program supported a Post-Basic Mental Health Clinician training program. Sixteen nurses have completed the six-month training program to date, with a further 22 will graduate in July. These nurses are filling an immediate need for mental health services at both the primary and secondary levels of care.
Our baseline assessment identified several barriers to survivor engagement with care, including stigma, cost of transportation, and distance to health facilities, resulting in delays in accessing care and high attrition rates between the primary and secondary-tertiary levels of care. The ETP&SS program sought to address these issues by increasing access to high-quality services for survivors through clinical trainings, referral system strengthening, facility renovations, and other direct support to facilities providing care to survivors. While challenges still exist, over the life of the program, there was a significant decrease in experience of EVD-related stigma at facilities and a marked increase in attendance at referral appointments for more advanced care.