A conceptual framework for understanding financial burden during serious illness.

ABSTRACT

Life-threatening illness is associated with financial burden among families. During this time, care-related expenses often increase. The concept of financial burden has not fully been explored nor conceptually described in the literature. Our study coalesces the empirical literature on financial burden into a more comprehensive multidimensional theoretical framework to understand financial burden among patients and families dealing with serious illness. Using Jabareen's phased approach for building conceptual frameworks, we synthesized the existing scientific literature (including existing measures of financial burden) to construct an empirically derived model. Definitions of financial burden are overlapping with similarities, but also inconsistencies. Many studies have focused more on objective and operational definitions, than subjective and conceptual aspects. Regarding measures for financial burden, many studies have only used a few items. The financial burden is dependent on the illness trajectories and duration. By considering multidimensionality, we illustrate potential financial burden factors (objective, coping, and subjective). Although anticipation and expectations about future financial issues are important, patients and caregivers generally experience objective aspects of burden, followed by subjective impressions of burden. Coping skills likely reduce subjective burden. Based on the results, we redefine the financial burden among patients with life-threatening illness and caregivers.