Ebola Survivors Lived Experiences – Coding Framework – User Guide

Persistent identifier

10.17037/DATA.00004561

Description

The tabular dataset contains anonymised quotes that outline the lived experiences of survivors of the Ebola virus disease (EVD). Data was collected from a set of 15 in-depth interview participants. The transcripts from these interviews cover a range of topics, including lived experiences (including psychological distress, psychosocial challenges) of the patients/survivors of the Ebola Virus Disease (EVD), their beliefs (including misperceptions such as witchcraft) and coping mechanisms for managing EVD. This data supports the publication, “A qualitative study of Ebola survivors’ psychological experiences of evacuation, treatment and community reintegration: Lessons in holistic person-centred care from the 2022 outbreak in Uganda”.

Data collection methods

Qualitative, in-depth interviews were held with 15 participants, selected from a purposive sample of EVD survivors. The participants were interviewed at their health facility or any other venue of their choice usually within their community. The interviews, which were conducted in the local language, Luganda, lasted 45 to 90 minutes and mainly elicited participants’ perspectives on their lived experiences with the EVD and their coping mechanisms.

Data analysis and preparation

Data in the form of voice recordings were transcribed verbatim, and the transcripts were subjected to a meticulous anonymisation process before analysis was conducted. A thematic analysis was conducted, by which the aim was to explore in detail EVD survivors’ lived experiences, their beliefs around EVD and their coping mechanisms.

Geographic regions

Data collection for the EBOLA survivors’ Lived Experiences study took place in Mubende District, at the District’s Regional Referral Hospital and in communities where EVD survivors’ lived.

Key dates

Data collection for the EBOLA survivors’ Lived Experiences study started in September 2023 and ended in December 2023.

Quality controls

Data quality was ensured by following specific protocols and SOPs, and clear documentation of all processes.

Population

Human population.

Privacy

We protected the confidentiality of personal and/or sensitive information by adopting several strategies, including (i) the training of research team members (research assistants) responsible for data processing, on strategies for protecting confidentiality, and (ii) ensuring that participant names did not appear anywhere on the interview transcripts, and that these are contained in a document separate from the transcripts and only accessible to the research team.

Ethics

Ethics approval for this study was obtained from the Research and Ethics Committee of the Uganda Virus Research Institute (approval reference number GC/127/961), the Science and Ethical Committee of the London School of Hygiene and Tropical Medicine (reference number 29605), and the Uganda National Council for Science and Technology (reference number HS2870E). Written informed consent was obtained from each eligible participant. All the research procedures adhered to the relevant guidelines and regulations.

Keywords

Ebola Virus Disease, mental health, holistic person-centred care, Uganda

Language of written material

English and Luganda

Project information

A Study to explore the Ebola Virus Disease associated negative beliefs and lived experiences of affected members of the community (this study was one of the several components of a large project entitled: “Project to address the medium-to-long-term EBOLA associated psychological Distress and psychosocial problems in Mubende District in central Uganda (Ebola+D Project”).

Creators

File Description

The ‘Ebola_Survivors_Lived_Experiences-Coding_Framework’ tabular dataset contains anonymised quotes that outline the lived experiences of survivors of the Ebola virus disease (EVD). These are separate into three themes, with sub-categories for each (listed below). This is followed by recommendations.

1. Experiences of Evacuation & at Isolation Centre
   1. Experiences prior to and during evacuation
   2. Experiences at isolation centre prior to diagnosis
2. Experiences while at Ebola Treatment Unit (ETU)
   1. Distressful experiences at ETU - From Health workers
   2. Distressful experiences at ETU - From Family & Community
   3. Concerns about Open Concept
   4. Positive experiences
3. Experiences within Community following Discharge from Hospital
   1. Stigmatisation & segregation - From Health workers (inadvertent)
   2. Stigmatisation & segregation - From family
   3. Stigmatisation & segregation - From community
   4. Positive experiences
4. Recommendations