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

OBJECTIVE

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.