Caring for persons with X-linked dystonia-parkinsonism in Metro Manila: insights into the burden of family caregivers.

X-linked dystonia-parkinsonism (XDP) is a rare, hereditary neurodegenerative movement disorder endemic to the Philippines, characterized by progressive dystonia and parkinsonism. Given the limited treatment options, chronic course, and economic burden, caregiving responsibilities fall heavily on family members yet little is known about their burden and quality of life. This study examined the burden of family caregivers of persons with XDP in Metro Manila by assessing caregiver strain, quality of life, and lived experiences. A mixed-methods convergent design was employed, integrating quantitative and qualitative data. Twenty-eight caregiver-patient pairs were recruited through purposive and convenience sampling. Caregivers completed sociodemographic surveys, the Modified Caregiver Strain Index-Pilipino (MCSI-P), and the World Health Organization Quality of Life-Brief (WHOQOL-BREF) Filipino version. Two focus group discussions and two key informant interviews were conducted to explore lived experiences. Quantitative data were analyzed using descriptive and inferential statistics, while qualitative data underwent thematic analysis. Caregiver strain was associated with civil status, educational attainment, caregiver-patient relationship, and patients' age at diagnosis. The mean MCSI-P score was 23.1, with 43% (n = 12) reporting severe strain while the mean WHOQOL-BREF score was 45.1 (SD = 23.41), below the midpoint, with lowest ratings in the environmental domain. Themes generated included emotional and psychological dimensions, caregiving demands, coping strategies, socioeconomic impact, and barriers to awareness and diagnosis. Despite modest quantitative strain scores, caregivers experience substantial emotional, physical, and socioeconomic burden. These findings highlight the need for comprehensive caregiver support for the demands of XDP care.