Caregiver Burden in an Online Sample of Family Caregivers: Cross-Sectional Associations with Anticipatory Grief and Family Needs

Abstract

Background/Objectives: Caregiver burden is common among family caregivers providing home-based care and may be associated with anticipatory grief (i.e., the emotional response to an expected loss before death), family-needs satisfaction, and care-related factors. This study aimed to assess the proportion of caregivers reporting burden and examine the independent and incremental associations of burden with characteristics of the caregiver, family, and care recipient in a Portuguese sample. Methods: An online cross-sectional, observational, descriptive-correlational study was conducted with 401 family caregivers of individuals with perceived PC needs in Portugal. Family caregivers were recruited through convenience and snowball sampling using healthcare networks, caregiver organizations, and social media platforms. Data were collected through an e-survey comprising sociodemographic and clinical variables, the Zarit Burden Interview (ZBI), the Family Inventory of Needs (FIN), and the Marwit-Meuser Caregiver Grief Inventory-Short Form (MM-CGI-SF). Descriptive statistics, bivariate analyses, and hierarchical multiple linear regression were performed to identify factors associated with caregiver burden. Missing data were handled using complete-case analysis. The study followed the STROBE and CHERRIES guidelines. Results: The mean age of caregivers was 55.93 ± 13.30 years, and most participants were female (81.5%). The mean ZBI total score was 57.91 ± 15.23. Using the predefined threshold (ZBI ≥ 46), 77.1% of respondents met criteria for caregiver burden. This proportion comprised 25.2% with mild burden and 51.9% with severe burden. Caregivers experiencing burden reported significantly higher anticipatory grief, lower satisfaction with family needs, and greater patient symptom burden. Hierarchical multiple linear regression explained 56.4% of the variance in caregiver burden (adjusted R2 = 0.541). Psychosocial factors accounted for the largest incremental contribution to explained variance (ΔR2 = 0.490, p < 0.001). In the fully adjusted model, anticipatory grief showed the strongest independent positive association with caregiver burden (β = 0.622, p < 0.001), whereas greater fulfilment of care needs was independently associated with lower burden (β = −0.180, p < 0.001). Conclusions: Findings should be interpreted as cross-sectional associations within a self-selected online sample. Caregiver burden was common among family caregivers providing home-based care and was associated with higher anticipatory grief and lower family-needs satisfaction. Routine assessment and family-centred support interventions may help address caregivers’ needs in this context.

The authors' abstract, as published at the source. Journal of Clinical Medicine, 2026 · DOI ↗