Meng Li,1,* Wenling Zhang,2,* Ning Zhang,3 Shen Li,4 Zhongjie Pan,5 Xiaoyun Xiong,6 Qiong Li,3 Junfan Wei,7 Huawei Li1 

1Nursing Department, The Third People’s Hospital of Henan Province, Zhengzhou, People’s Republic of China; 2Operation Department, Henan Provincial People’s Hospital, Zhengzhou, People’s Republic of China; 3School of Nursing Department, Xinxiang Medical University, Xinxiang, People’s Republic of China; 4School of Rehabilitation Department, Henan Vocational College of Tuina, Zhengzhou, People’s Republic of China; 5School of Medicine Department, Zhengzhou University of Industrial Technology, Zhengzhou, People’s Republic of China; 6Rehabilitation Medicine Department, The Third People’s Hospital of Henan Province, Zhengzhou, People’s Republic of China; 7Nursing Department, The Seventh Clinical College of Guangzhou University of Chinese Medicine, Shenzhen, People’s Republic of China

*These authors contributed equally to this work

Correspondence: Huawei Li, The Third People’s Hospital of Henan Province, 198 Funiu Road, Zhengzhou, Henan, People’s Republic of China, Tel +86 13937182631, Email 178065643@qq.com Junfan Wei, Guangzhou University of Chinese Medicine, No. 22,25 Yu’an 2nd Road, 30 District, Bao’an District, Shenzhen, People’s Republic of China, Tel +86 13253369959, Email weijunfan123456@163.com

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.

Keywords: moyamoya disease, cognition, experience, life management, mental, MMD