Social media utilization to understand the journey and unmet needs of patients with Parkinson’s disease in the Philippines

Abstract Background Parkinson's disease (PD) is a progressive neurodegenerative disorder with increasing global prevalence, yet comprehensive qualitative research on patient experiences in the Philippines remains scarce. Understanding the lived experiences and unmet needs of Filipino PD patients is essential for developing culturally appropriate interventions. Objective This phenomenological study aimed to characterize the patient journey and identify the unmet clinical, informational, and psychosocial needs of individuals living with Parkinson's disease in the Philippines through analysis of social media narratives. Methods A qualitative descriptive phenomenological design was employed, utilizing social media listening techniques to systematically retrieve and analyze publicly accessible posts from Facebook, YouTube, Reddit, and Twitter/X. Purposive sampling yielded 200 posts authored by self-identified Filipino PD patients and caregivers from January 2023 to April 2026. Data were analyzed using phenomenological thematic analysis. Results The analysis revealed that the Filipino PD experience is characterized by "navigating the Parkinson's maze"—a journey through interconnected physical, financial, geographic, and systemic challenges. The most pervasive theme was economic hardship, with patients describing medication costs reaching ₱15,000 monthly, chronic stock-outs, and difficult choices between medications and basic necessities. Significant diagnostic delays, limited access to neurologists outside Metro Manila, inadequate multidisciplinary care, and severe caregiver burden were also identified. Social media emerged as a vital platform for information exchange, emotional support, and advocacy. Conclusion Filipino PD patients face unique challenges shaped by healthcare system limitations, economic constraints, and geographic disparities. Findings underscore the urgent need for expanded medication access, government support programs, integration of multidisciplinary care, and recognition of social media as a valuable patient support resource.