Lived experience of patients following eye enucleation: a phenomenological study in western Iran

Eye enucleation is a life-altering procedure that profoundly disrupts patients’ psychological well-being, social functioning, and overall quality of life. While the resulting emotional distress is generally acknowledged, in-depth phenomenological explorations within specific cultural contexts remain scarce. This study explored the lived experiences of patients following enucleation in Kermanshah, Iran. A qualitative phenomenological approach was employed. Thirteen patients who had undergone enucleation at a teaching hospital affiliated with Kermanshah University of Medical Sciences were purposively selected and participated in in-depth, semi-structured interviews from September 2024 to March 2025. Data collection continued until data saturation was reached. Data were analyzed using Colaizzi’s seven-step method and managed with MAXQDA 2020. Credibility was ensured through Lincoln and Guba’s criteria, and reporting followed the COREQ checklist. Participants (mean age: 40.6; mean enucleation duration: 2.76 years) revealed four main themes (Denial and Initial Shock, Catastrophic Perception of Loss, Adaptation and Coping, and Ambivalence and Emotional Complexity, comprising 10 sub-themes. Eye enucleation causes intense but modifiable psychological distress, including stigma, burdens, and coping challenges. While patients adapt via prosthetics and support, clinical care must incorporate routine psychological screening, targeted pre-surgical counseling, and peer-support programs to facilitate prosthetic adjustment and mitigate stigma.