Experiences of Patients Living in a Unique Leprosy Hospice in Greece: An Interpretative Phenomenological Analysis

TL;DR

This study explores the personal experiences and emotional struggles of Greek leprosy patients living in a unique hospice, highlighting the lasting effects of stigma and isolation.

Contribution

The study provides a novel interpretative phenomenological analysis of the lived experiences of the last surviving leprosy patients in Greece.

Findings

Diagnosis of leprosy was a pivotal and life-altering event for participants.

Stigma and physical changes caused by the disease significantly affected participants' identities and social lives.

The hospice is perceived as a place of solace and acceptance, contrasting with the stigma outside.

Abstract

Background: Hansen's disease, or leprosy, has a long-standing presence in human history, and our study uniquely delves into the experiences of individuals who are among the last survivors of this condition in Greece. During the early 1930s, patients with Hansen's disease from Spinalonga, an isolated location in Crete, were moved to a medical facility in Athens. This event represents a significant historical change in the management and treatment of the disease. Following Spinalonga's closure, a Sanatorium emerged, evolving into Greece's sole Hansen's disease center and the present-day refuge for patients, underscoring the enduring stigma and abandonment associated with the disease.

Method: Our study, conducted through six interviews with unstructured schedules, provides a unique opportunity for these individuals to share personal insights, offering a profound understanding of their interpretations and experiences.

Results: Through interpretative phenomenological analysis, we unearthed four superordinate themes: the pivotal nature of the diagnosis, the visible impact of the disease on the body, the stigma associated with leprosy and its effects on individuals, and the significance of 'home' as a place of solace and acceptance.

Conclusions: These themes collectively depict the deep emotional trauma experienced by the participants, shedding light on the enduring impact of historical stressors, confinement practices, and the challenges of living with a devalued identity, shaping their profound sense of self.