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‘Once there is life, there is hope’ Ebola survivors' experiences, behaviours and attitudes in Sierra Leone, 2015
  1. Emilie Karafillakis1,
  2. Mohamed F Jalloh2,
  3. Azizeh Nuriddin3,
  4. Heidi J Larson1,
  5. Jimmy Whitworth1,
  6. Shelley Lees4,
  7. Kathy M Hageman5,
  8. Paul Sengeh6,
  9. Mohammad B Jalloh2,
  10. Rebecca Bunnell5,
  11. Dianna D Carroll7,
  12. Oliver Morgan3
  1. 1Department of Infectious Disease Epidemiology, London School of Hygiene & Tropical Medicine, London, UK
  2. 2FOCUS 1000, Freetown, Sierra Leone
  3. 3US Centers for Disease Control and Prevention, Atlanta, Georgia, USA
  4. 4Department of Global Health and Development, London School of Hygiene & Tropical Medicine, London, UK
  5. 5Division of Global Health Protection, US Centers for Disease Control and Prevention, Atlanta, Georgia, USA
  6. 6Department of Research and Evaluation, FOCUS 1000, Freetown, Sierra Leone
  7. 7National Center on Birth Defects and Developmental Disabilities, US Centers for Disease Control and Prevention, Atlanta, Georgia, USA
  1. Correspondence to Dr Heidi Larson; heidi.larson{at}lshtm.ac.uk

Abstract

Background In Sierra Leone, over 4000 individuals survived Ebola since the outbreak began in 2014. Because Ebola survivorship was largely unprecedented prior to this outbreak, little is known about survivor experiences during and post illness.

Methods To assess survivors' experiences and attitudes related to Ebola, 28 in-depth interviews and short quantitative surveys with survivors from all four geographic regions of Sierra Leone were conducted in May 2015.

Results Survivor experiences, emotions and attitudes changed over time as they moved from disease onset to treatment, discharge and life post-discharge. Survivors mentioned experiencing acute fear and depression when they fell ill. Only half reported positive experiences in holding centres but nearly all were positive about their treatment centre experiences. Survivor euphoria on discharge was followed by concerns about their financial situation and future. While all reported supportive attitudes from family members, about a third described discrimination and stigma from their communities. Over a third became unemployed, especially those previously engaged in petty trade. Survivor knowledge about sexual transmission risk reflected counselling messages. Many expressed altruistic motivations for abstinence or condom use. In addition, survivors were strongly motivated to help end Ebola and to improve the healthcare system. Key recommendations from survivors included improved counselling in holding centres and long-term government support for survivors, including opportunities for participation in Ebola response efforts.

Conclusions Survivors face myriad economic, social and health challenges. Addressing survivor concerns, including the discrimination they face, could facilitate their reintegration into communities and their contributions to future Ebola responses.

This is an Open Access article distributed in accordance with the terms of the Creative Commons Attribution (CC BY 4.0) license, which permits others to distribute, remix, adapt and build upon this work, for commercial use, provided the original work is properly cited. See: http://creativecommons.org/licenses/by/4.0/

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Footnotes

  • Handling editor Seye Abimbola

  • Contributors EK and HL co-led and conducted the analysis and interpretation of the qualitative data. JW and SL supported the analysis of the qualitative data. MFJ led the statistical analysis of the quantitative data. All authors contributed to the preparation of the manuscript and supported the interpretation of the qualitative and quantitative data.

  • Funding Funding was received from the ERAES programme (funded by the Wellcome Trust, grant number 1504) and FOCUS1000 received funding from the CDC Foundation, administered through eHealth Africa.

  • Competing interests None declared.

  • Ethics approval The Sierra Leone Ethics and Scientific Review Committee approved the protocol and the CDC IRB determined the project to be public health non-research.

  • Provenance and peer review Not commissioned; externally peer reviewed.

  • Data sharing statement No additional data are available.