Factors influencing caregiver burden and its prevalence level amongst family caregivers of patients with palliative care needs and serious illnesses

BACKGROUND: The support of family caregivers is vital in home-based palliative care, ensuring quality care for patients with palliative care needs. In their commitment to prioritising the well-being of their loved ones, caregivers often neglect their own physical and emotional health, leading to varying degrees of caregiving burden. This study aims to estimate the prevalence of caregiver burden and identify the key factors associated with it among family caregivers of patients receiving services from a palliative care institution in Thiruvananthapuram district, Kerala. METHODS: This cross-sectional study included 270 family caregivers aged 18 years and above, providing care for three months to less than a year to patients registered at the selected palliative care institution between September 2023 and August 2024. Data was collected telephonically using a structured interview schedule and the burden level was assessed using the Achutha Menon Centre-Caregiver Burden Inventory. The distribution of burden levels was analysed and associations with study variables were examined using Chi-square test. Binary logistic regression was performed to identify significant predictors of moderate-to-high caregiver burden. A 95% confidence interval was used and a p value of ≤ 0.05 was considered to be statistically significant. RESULTS: Findings revealed that 54.8% of caregivers experienced moderate levels of burden. Factors associated with moderate to high burden included being employed, spending full time with the patient, experiencing a career break and perceiving that caregiving impacted their family's future plans. Caregivers who faced difficulty in seeking help, struggled to balance work and home responsibilities, had existing diseases or experienced emotional and physical challenges in the past four weeks were more likely to report moderate-high burden. Lack of breaks, limited support, poor social connections outside home, insufficient time for self-care, deteriorating health post-caregiving and inadequate sleep also contributed to higher burden. CONCLUSION: Findings emphasise the multifaceted challenges caregivers face, reinforcing the need for the implementation of comprehensive support mechanisms including emotional and psychosocial support, accessible respite care services and flexible workplace policies to reduce burden and enhance caregiver well-being.