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. Kermanshah University of Medical Sciences, grant no 50004695.

Kermanshah University of Medical Sciences, Kermanshah, Iran Alireza Khatony, Amir Jalali, Alireza Abdi, Parvin Abbasi, Aliakbar Vaisi-Raygani, Maryam Bestankar & Rostam Jalali Student Research Committee, School of Nursing and Midwifery, Kermanshah University of Medical Sciences, Kermanshah, Iran The authors declare no competing interests. This research protocol was approved by the Ethics Committee of the Deputy for Research and Technology, Kermanshah University of Medical Sciences (IR.KUMS.REC.1403.293), and was conducted in accordance with the ethical principles outlined in the Declaration of Helsinki (1964) and its subsequent amendments. Informed consent was obtained from all participants prior to enrollment.

To address potential emotional distress, participants were informed during the consent process of access to free psychological support. Interviews were paused immediately if signs of severe distress or suicidal ideation emerged, and a formal referral pathway connected individuals requiring further care to hospital-affiliated clinics suicidal ideation emerged, and a formal referral pathway connected individuals requiring further care to hospital-affiliated clinical psychologists. To ensure data security for long-term preservation.