G-2496

The Experiences and Challenges of Living with Behçet’s Disease: A Phenomenological Study in Northwest Iran

 Erfan Babareza ¹ ℗, Mohammad Heidari ², Parisa Noorabadi ³ ©   

 
Abstract

Introduction: Behçet's disease (BD) is a chronic, multisystem, and auto-inflammatory disease characterized by recurrent oral and genital ulcers, skin lesions, and involvement of vascular, neurological, gastrointestinal, and musculoskeletal systems. Despite the high prevalence of BD in Iran, there is a lack of qualitative research exploring patient experiences. To develop comprehensive treatment approaches that are tailored to the real needs of patients, a thorough understanding of their daily challenges is essential. This study aimed to explore the lived experiences and daily challenges of BD patients in Northwest Iran. Methods and Materials: This study was conducted using a descriptive phenomenological method at Imam Khomeini Hospital, Urmia, from October to December 2024. A total of 12 patients with confirmed BD, diagnosed by a rheumatologist and with at least one year since diagnosis, were purposefully selected. After obtaining written informed consent, each patient participated in a semi-structured, face-to-face interview, conducted individually in a separate session. Data collection continued until saturation was reached. The data analysis followed Colaizzi’s seven-step approach. Results: three main themes emerged from the data analysis: (1) Behçet's disease as an obstacle to living a normal life, highlighting reduced mobility and function, chronic fatigue, dietary limitations, communication issues, and sleep disturbances; (2) Psychological burden and resilience, highlighting emotional distress, mental health issues, and coping strategies; and (3) Disease’s impact on family and social dynamics, involving supportive and unsupportive family experiences, sexual dysfunction, financial strain, and social misconceptions. Conclusion and Discussion: BD deeply affects the daily lives, physical activities, eating habits, sleep, social interactions, mental health, employment, economic status, and sexual life of those affected. There is a need for comprehensive management strategies that address not only the physical symptoms but also the psychological, familial, and social challenges of BD patients. Educating patients' families to increase their awareness of the disease and provide a supportive environment is highly recommended. Adequate insurance coverage is essential to help cover the costs of frequent hospitalizations and lifelong treatment. Patients who become disabled due to the disease and lose their jobs should be assigned suitable alternative jobs or supported by charitable organizations. Given the patients’ psychological issues and the emotional burden of a lifelong disease, it is recommended to include mental health professionals in the treatment team. The results of this study can help health policymakers develop treatment programs that are tailored to the real needs and daily challenges of BD patients.

Keywords: Behçet’s disease, Lived experiences, Phenomenological study, Northwest Iran