Qualitative Study on the Real Experiences of Patients with Meige Syndrome Based on the Individual and Family Self-Management Theory

Meng Li,1,2,* Qingmiao Li,3,* Junfan Wei,4,* Yanhong Li,1 Feng Liu,1 Shen Li,5 Ning Zhang,6 Ruipeng Song,1 Qiong Li,6 Jing Cao7 1Nursing Department, The Third People’s Hospital of Henan Province, Zhengzhou, People’s Republic of China; 2School of Management, California State University, Long Beach, CA, USA; 3School of Social Undertakings, Henan Normal University, Xinxiang, People’s Republic of China; 4School of Nursing, Guangzhou University of Chinese Medicine, Guangzhou, People’s Republic of China; 5School of Rehabilitation, Henan Vocational College of Tuina, Luoyang, People’s Republic of China; 6School of Nursing, Xinxiang Medical University, Xinxiang, People’s Republic of China; 7School of Nursing, Zhengzhou University, Zhengzhou, People’s Republic of China*These authors contributed equally to this workCorrespondence: Jing Cao, Zhengzhou University, No. 100 Science Avenue, High-Tech Zone, Zhengzhou, Henan, People’s Republic of China, Tel +86 13653714626, Email [email protected]: This study aimed to analyze the real experiences of patients with Meige Syndrome, which is an idiopathic dystonia, during the perioperative period and to explore the practical application and effectiveness of Individual and Family Self-Management Theory (IFSMT) in improving patient experiences.Methods: A qualitative descriptive research methodology was employed to elucidate the intricate psychological and social experiences encountered by patients with Meige Syndrome throughout the perioperative phase. This study conduct face-to-face, one-on-one, semi-structured interviews with 16 Meige Syndrome patients to gain an in-depth understanding of the patients’ true feelings and needs. Interview data were organized and analyzed using Colaizzi’s method, and themes were refined in conjunction with IFSMT to reveal patients’ self-management practices and influencing factors.Results: Through in-depth analysis using Colaizzi’s method and the application of IFSMT to the perioperative experiences of patients with Meige Syndrome, and reported according to COREQ standards, three core themes were identified: (1) Context Dimension (specific disease factors, physical and social environmental factors, personal and family factors), (2) Process Dimension (knowledge and beliefs, self-regulation and self-efficacy, social facilitation), and (3) Outcome Dimension (proximal and distal outcomes of self-management behaviors).Conclusion: This study demonstrates that IFSMT has significant application value in the perioperative experiences of patients with Meige Syndrome. Enhancing patients’ knowledge, beliefs, self-regulation abilities, and social support can promote effective self-management behaviors, thereby improving their quality of life and health status. Additionally, the study reveals the complexity of self-management in perioperative patients, emphasizing the importance of interdisciplinary collaboration and comprehensive interventions in enhancing patient experiences. Future research can further explore how to apply these theories in clinical practice to optimize perioperative management and rehabilitation processes for patients with Meige Syndrome.Keywords: Meige Syndrome, individual and family self-management theory, IFSMT, qualitative study, real experiences