Understanding caregiver perspectives on the management of individuals with Parkinson’s disease in Thailand: A qualitative study

Abstract

Research question: What are the experiences, challenges, coping mechanisms, and support needs of caregivers for individuals with Parkinson’s disease?
Materials and Methods: Ten caregivers of individuals with individuals with Parkinson’s disease (PD) at the Physical Therapy Centre, Mahidol University, Thailand, were invited to participate in individual, face-to-face, in-depth interviews, which were audio-recorded. The interview questions and thematic analysis were developed and conducted by experts in PD and qualitative research.
Results: Four key themes emerged: (1) caregivers’ understanding of PD, (2) daily caregiving responsibilities, (3) concerns and challenges in PD care, and (4) unmet needs and expectations. Caregivers reported significant challenges in recognizing and managing motor symptoms such as tremors, bradykinesia, and postural instability, particularly during medication “off” periods. Physiotherapy management emerged as a major concern, with many caregivers expressing difficulties in maintaining individual’s motivation and engagement in exercise routines and uncertainty about appropriate interventions. In the absence of formal education, caregivers frequently relied on self-directed learning through online platforms, hospital-provided brochures, and experiential knowledge. Emotional strain, fear of causing injury, and the substantial time burden associated of managing medication adjustments and daily care compounded the challenges of caregiving. Importantly, caregivers highlighted substantial unmet needs, including access to stage-specific educational materials, clear physiotherapy guidance, and financial support to sustain long-term care responsibilities.
Conclusion: This study underscores the multifaceted challenges encountered by caregivers of individuals with PD in Thailand, particularly in relation to physiotherapy, symptom management, information gaps, and resource limitations. Caregivers reported experiencing both emotional and physical burdens, a lack of knowledge about disease progression, and insufficient access to tailored support services. Addressing these gaps through structured caregiver education, physiotherapy training, and improved access to information and financial support is crucial for enhancing caregiving capacity and the quality of care for individuals with PD.