The lived experience of Parkinson's disease in the Philippines: challenges, cultural constructs, and caregiving impacts.

Abstract

Parkinson's disease (PD) is a progressive neurodegenerative disorder characterized by both motor and non-motor symptoms. Although its global burden is rising, PD remains underrecognized in low- and middle-income countries like the Philippines, where access to diagnosis, treatment, and support systems is limited. This research addresses the gap between clinical outcomes and the realities of patient care, thereby enabling the development of healthcare policies and the enhancement of healthcare delivery that meet the needs of both patients and caregivers. This study aims to explore the lived experiences of PD patients and their caregivers in Cebu Province, Philippines. A phenomenological qualitative design was employed. Data were gathered through structured and unstructured interviews and focus group discussions (FGDs) conducted during a Parkinson's Awareness event in April 2025. A total of 43 patients (mean age: 66.7 years, mostly male) and 32 caregivers (mean age: 53.8 years, mostly female) participated. Caregivers included family members/relatives and paid hired caregivers who provided ongoing assistance to persons living with Parkinson's disease. Given their differing relationships to the patient and care responsibilities, caregiver accounts were interpreted within this heterogeneous caregiving context. Thematic analysis, which was conducted manually, was guided by the constant comparative method and a standardized codebook. Five major themes emerged: (1) Acceptance and emotional adjustment to diagnosis; (2) Navigating treatment and healthcare systems; (3) Daily and emotional challenges; (4) Shifting family dynamics and caregiving roles; and (5) Limited community and institutional support. Filipino cultural values (hiya, kapwa, and pakikisama) significantly shaped caregiving responses and help-seeking behaviors. PD care in the Philippines is marked by psychological burden, caregiver strain, and systemic healthcare gaps. Culturally sensitive, multidisciplinary approaches are urgently needed, including expanded caregiver support, mental health services, and improved access to specialized care. MeSH Terms: Parkinson's Disease, caregivers, qualitative research, Philippines, Health Services Accessibility, family, caregiver burden, cultural constructs, social support, activities of daily living, quality of life.