Caregiver Burden and Support Needs in Families of Patients With Parkinson's Disease: A Mixed-Methods Investigation Combining Caregiver Strain Questionnaires and Focus Group Discussions.

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Background Parkinson's disease is a progressive neurodegenerative disorder associated with declining functional independence and reduced quality of life. Family caregivers of individuals with Parkinson's disease frequently experience substantial emotional, physical, social, and financial challenges that may adversely affect their well-being and their ability to provide long-term care. This study evaluated caregiver burden and support needs using a mixed-methods approach that incorporated an investigator-developed caregiver burden questionnaire and focus group discussions. Methods This mixed-methods cross-sectional study included 102 family caregivers of individuals with Parkinson's disease attending a tertiary care neurology center. The quantitative component utilized an investigator-developed Caregiver Burden and Support Needs Questionnaire, developed following a review of published caregiver burden literature and common conceptual domains identified in caregiver burden research. Established caregiver burden instruments, including the Caregiver Strain Index (CSI) and Zarit Burden Interview (ZBI), were reviewed during questionnaire development; however, no copyrighted questionnaire items or scoring systems were reproduced or administered in this study. Qualitative data were collected through structured focus group discussions to explore caregivers' experiences, emotional challenges, and perceived support needs. Quantitative data were analyzed using descriptive and inferential statistics, while qualitative data were analyzed using thematic analysis. Results Among the 102 caregivers, 64 (62.8%) were female, and 58 (56.9%) were spouses of the care recipients. Overall, 81 (79.3%) participants experienced moderate-to-high caregiver burden. Higher caregiver burden was significantly associated with longer caregiving duration, greater daily caregiving hours, advanced disease stage, and cognitive impairment in the care recipient. Qualitative analysis identified four major themes: emotional distress, social isolation, financial burden, and unmet support needs. Participants frequently expressed the need for counselling services, respite care, caregiver support groups, and financial assistance. Conclusion Family caregivers of individuals with Parkinson's disease experience substantial emotional, physical, social, and financial burden, particularly when caregiving demands are prolonged or disease severity is greater. The integration of quantitative and qualitative findings highlights the need for comprehensive caregiver-centered psychosocial support services, including counselling, respite care, and structured support programs, to improve caregiver well-being and sustain long-term caregiving.

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