Daily life experiences of persons with parkinson’s disease and subthalamic nucleus-deep brain stimulation: a descriptive phenomenological study

BACKGROUND: Persons with Parkinson's disease (PD) often face limitations in daily participation and self-management due to fluctuating motor and non-motor symptoms. Subthalamic nucleus deep brain stimulation (STN-DBS) is an established intervention for individuals whose response to pharmacological treatment becomes insufficient. While STN-DBS demonstrates effectiveness in improving measurable functional outcomes, less is understood about its influence on lived experiences in everyday life. This study aimed to explore and describe how individuals with PD experience daily life following STN-DBS. METHODS: A descriptive phenomenological design was employed, with semi-structured interviews conducted with ten participants and analyzed using Giorgi's descriptive method. RESULTS: Findings revealed strong feelings of gratitude and relief linked to restored autonomy and daily functioning. Participants described reclaiming a sense of normalcy and the ability to participate in meaningful activities, shifting from feeling like a patient to feeling fully human again. However, challenges emerged around incorporating the device into one's body and the persistent fear of symptom recurrence. CONCLUSION: Despite awareness of continued disease progression, participants emphasized enhanced self-management and independence following STN-DBS. The treatment was experienced as life-changing, underscoring the importance of maintaining participation and autonomy. Future research should explore longitudinal experiences as symptoms evolve beyond the scope of DBS efficacy.