Living Under the Constant Threat of Ebola: A Phenomenological Study of Survivors and Family Caregivers During an Ebola Outbreak.

Background: Ebola is a highly infectious disease that is caused by viruses of the family Filoviridae and transmitted to humans by direct contact with animals infected from unknown natural reservoirs. Ebola virus infection induces acute fever and death within a few days in up to 90% of symptomatic individuals, causing widespread fear, panic, and antisocial behavior. Uganda is vulnerable to future Ebola outbreaks. Therefore, the survivors of Ebola and their family caregivers are likely to continue experiencing related antisocial overtones, leading to negative health outcomes.

Purpose: This study articulated the lived experiences of survivors and their family caregivers after an Ebola outbreak in Kibale District, Western Uganda. Eliciting a deeper understanding of these devastating lifetime experiences provides opportunities for developing and implementing more compassionate and competent nursing care for affected persons.

Methods: Ebola survivors and their family caregivers were recruited using a purposive sampling method. Twelve (12) adult survivors and their family caregivers were recruited and were interviewed individually between May and July 2013 in Kibale, a rural district in Western Uganda close to the border of the Democratic Republic of the Congo, where Ebola virus was first discovered in 1976. Oral and written informed consent was obtained before all in-depth interviews, and the researchers adhered to principles of anonymity and confidentiality. The interviews were recorded digitally, and data analysis employed Wertz's Empirical Psychological Reflection method, which is grounded in descriptive phenomenology.

Results: Living under the constant threat of Ebola is experienced through two main categories: (a) defining features of the experience and (b) responding to the traumatizing experience. Five themes emerged in the first category: (a) fear, ostracism, and stigmatization; (b) annihilation of sufferer's actualities and possibilities; (c) the lingering nature of the traumatic experience; (d) psychosomatic manifestations; and (e) the inescapable nature of the experience. The second category was composed of two themes: (a) seeking self-preservation and protection and (b) transcending victimhood and becoming empowered.

Conclusions: Living under the constant threat of Ebola is experienced as distressing in the physical, social, and psychological realms. In the future, prompt treatment and nursing care are recommended to minimize deaths and to reduce the widespread terror, anxiety, ostracism, and stigmatization that affected individuals and families face. Furthermore, it is recommended that the resilience of survivors and caregivers be increased to facilitate their better coping with the rampant antisocial overtones that they are likely to experience because of their association with Ebola.