Abstract

BackgroundIn late 2015, the Sierra Leone government established the Comprehensive Program for Ebola Survivors (CPES) to improve the well-being of 3466 registered Ebola virus disease (EVD) survivors. This case analysis outlines the challenges of conducting research studies on the health situation of these EVD survivors in a complicated, post-Ebola context. It outlines strategies to address these challenges without compromising research quality. The mixed-methods study sought to determine EVD survivors’ access to health services offered through CPES, their health and disability status, and psychosocial and mental health issues faced. Qualitative data from survivors and stakeholders at multiple levels complemented and contextualized the survey results to help understand the unique health and associated socioeconomic challenges that EVD survivors face, which could be applied to other crisis settings. Study findings indicated that CPES had lasting impacts on Sierra Leone’s health system, enabling it to respond to EVD survivors, who increasingly accessed health services and showed lower levels of disability after receiving care.DiscussionUnderstanding the health service needs of this specialized population in a country with an overloaded health system after the Ebola epidemic makes this research study important and timely. The study faced several challenges, including working in a low-resource and low-capacity setting marked by constantly changing priorities and activities of CPES donors and implementers. Further, the study aimed to measure sensitive topics, such as mental health and disability, with standardized tools that required careful contextualization for accurate reporting of findings. Strategies to overcome these challenges included utilizing a mixed-methods approach to contextualize and validate survey results. The study also enabled capacity building of local research teams to ensure that they could follow lines of inquiry and navigate the complex post-Ebola context.ConclusionsFlexibility is paramount when conducting high-quality research for representative and useful results. Timely research and ongoing sharing of the findings with stakeholders is critical to ensure that they benefit study subjects. Furthermore, in such settings, there is a need to balance engagement of stakeholders with maintaining independence and impartiality in the research design and subsequent data produced.

Highlights

  • In late 2015, the Sierra Leone government established the Comprehensive Program for Ebola Survivors (CPES) to improve the well-being of 3466 registered Ebola virus disease (EVD) survivors

  • Ministry of Health and Sanitation (MOHS) health facilities were modified throughout the country in order to treat and refer Ebola Virus Disease (EVD) survivors after their discharge from Ebola Treatment Units

  • Funding and programmatic changes over the life of the project led to a decrease in the availability of medications at the health facilities or peripheral health units (PHUs)

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Summary

Discussion

Scientific importance of this research Given this scenario of a population with special health service needs in a country context with an overloaded health system after the Ebola epidemic, this research study on the situation of survivors and the health services that they access and receive is especially important and timely. The study adapted generic tools such as the WHODAS and the mental health modules (PHQ-9 and GAD-7) to the country context to examine effects of the epidemic on the disability and mental health status of survivors in the West Africa post-Ebola setting These tools had to take into account population knowledge, language and literacy levels, as well as cultural understanding to ensure that the respondents interpreted them as intended. Ensuring time for capacity building among the interviewers resulted in their improved ability to elicit nuanced information as well as effectively follow lines of inquiry This effort, coupled with survey data, and the CPES PIU’s involvement and contextual insights helped build a fuller picture of survivors’ post-Ebola experiences and health needs while creating a team of data collectors with improved data collection and research skills. Taking into account the nuances of the crisis context when adapting these tools, while ensuring their sensitivity to the study population’s concerns was very important for accurate reporting and recording of findings

Conclusions
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