Caregiver Burden And Psychological Distress Among Family Caregivers Of Patients With Chronic Neurological Illness: A Mixed-Methods Study At Central Park Teaching Hospital

Abstract

Background: Chronic neurological illnesses impose substantial physical, emotional, psychological, and socioeconomic burdens on informal family caregivers, particularly in low- and middle-income countries where family-centered caregiving predominates. Despite growing international evidence regarding caregiver distress in neurodegenerative disorders, limited mixed-methods data are available from Pakistani tertiary-care settings. Objective: To evaluate caregiver burden, psychological distress, and associated predictors of adverse caregiver outcomes among family caregivers of patients with chronic neurological illness at Central Park Teaching Hospital. Methods: A mixed-methods cross-sectional observational study was conducted among 93 family caregivers of patients with chronic neurological disorders. Quantitative assessment included caregiver burden, anxiety, depression, sleep quality, resilience, and quality-of-life measures, while qualitative interviews were conducted among purposively selected participants to explore caregiving experiences. Descriptive statistics and logistic regression analyses were used to identify predictors of poor caregiver outcomes. Results: Moderate-to-severe caregiver burden was identified in 61.3% of caregivers, while clinically significant anxiety and depression were observed in 44.1% and 40.9% of participants, respectively. Neuropsychiatric symptoms in care recipients independently predicted adverse caregiver outcomes (OR 2.84, 95% CI 1.52–5.31, p<0.001). Functional dependency (OR 2.36, 95% CI 1.24–4.48, p=0.008), caregiving duration exceeding 8 hours daily (OR 2.11, 95% CI 1.10–4.03, p=0.021), poor sleep quality (OR 1.94, 95% CI 1.01–3.72, p=0.041), and reduced resilience (OR 1.88, 95% CI 1.02–3.46, p=0.038) were also significantly associated with poor caregiver outcomes. Qualitative findings highlighted emotional exhaustion, social isolation, financial strain, and inadequate psychosocial support as major caregiving challenges. Conclusion: Family caregivers of patients with chronic neurological illness experience substantial multidimensional burden characterized by psychological distress, impaired sleep, and reduced quality of life. Caregiver-focused multidisciplinary interventions, psychological screening, and resilience-based support strategies should be integrated into tertiary neurological care services in Pakistan.