Exploring the Real Mental Experience of Patients with Moyamoya Disease: A Qualitative Analysis.

PURPOSE

The objective of this study was to explore the real mental experiences of moyamoya disease patients.

PATIENTS AND METHODS

A phenomenological research method was used, and participants were selected by purposive sampling from two tertiary care hospitals in Henan Province, China. Semi-structured in-depth interviews were conducted with 17 patients diagnosed as moyamoya disease face-to-face. Colaizzi's method was used to analyze the collected data.

RESULTS

Five major themes were identified through phenomenological analysis: (1) cognitive and emotional experiences, including fear, denial, and evolving self-perception; (2) psychological adjustment, featuring active coping strategies and reliance on social support; (3) impact on quality of life, including challenges in daily functioning and interpersonal relationships; (4) information needs and seeking, highlighting patients' difficulties accessing and understanding health information; and (5) long-term care and support, encompassing extended rehabilitation needs, psychological counseling, and community and family involvement. These findings provide an in-depth account of the real mental experiences of patients with Moyamoya disease and reveal their psychological struggles, adaptive efforts, and care expectations.

CONCLUSION

This study reveals the complex psychological burden experienced by Chinese patients with moyamoya disease, including persistent emotional distress, evolving coping strategies with disease progression, and unsatisfied needs for social and informational support. These findings underscore the need to incorporate psychological care (eg, early screening, emotional counseling, and caregiver engagement) into routine moyamoya disease management.