Swinging Between Hope and Despair: Experiences of Patients with Behçet's Disease: A Phenomenological Research Study

Background: Behçet's disease (BD) can severely impact the psychosocial and emotional aspects of patients, significantly disrupting their quality of life. Objectives: The purpose of this study was to describe the psychosocial and emotional experiences of patients with BD and their coping strategies. Methods: This study was conducted using a qualitative method with a hermeneutic phenomenological approach. Data were collected through unstructured and in-depth interviews (9 conducted face-to-face and 6 via WhatsApp video calls) until data saturation was reached. Face-to-face interviews took place at the rheumatology clinic and the rheumatologist’s office from April to July 2023. Data analysis was performed using Diekelmann's seven-step method. The trustworthiness of the study was ensured based on the criteria of Lincoln and Guba, as well as Sim and Sharp. Results: By analyzing the data, 580 codes were extracted, leading to the identification of 12 sub-themes and 2 main themes. The first theme, "emotional, mental, and communicative instability," included the sub-themes of indecisiveness and uncertainty, moving away from desires and wishes, feelings of despair and demise, fears caused by the disease outcomes, sadness and mental anguish, isolationism, and reluctance to seek support. The second theme, "psychological and communicative strengthening strategies," comprised the sub-themes of having an occupation, seeking support, hoping for miracles and healing, doing mental exercises, and engaging in hobbies. Conclusions: This study revealed numerous emotional, psychological, and communicative challenges faced by patients with BD, as well as the strategies they use to cope with these problems. It is recommended that the findings of this study be used to enhance the care team's understanding of the mental and communicative issues experienced by these patients and to improve their skills in teaching psychological strengthening strategies.