A Conceptual Framework for Understanding Financial Burden during Serious Illness

Background. Life-threatening illness such as cancer or end-stage heart disease is associated with financial burden among family or informal caregivers, because it often requires expensive therapy or medical treatment. The care-related expenses such as medication costs, health insurance premiums and deductibles, and hospitalization are rapidly increasing. This suggests that financial burden is also increasing for many patients living with life threatening illnesses. However, to date, we have not fully explored and described financial burden as a concept. The purpose of this study is to coalesce the extensive empirical literature on financial burden into a more comprehensive multidimensional theoretical framework that is relevant for understanding this issue among patients and families dealing with serious illness.

Methods. To address this gap in literature, we used Jabareen’s phased approach (2009) for building conceptual frameworks. This paper synthesizes the existing scientific literature and builds off of a systematic review on financial burden and measurement tools for patients and family caregivers coping with serious illness (under review elsewhere) to construct an empirically derived model of this important concept.

Results. Definitions of financial burden from existing studies are overlapping and similar but also inconsistent. Many prior studies have focused more on objective and operational definition of financial burden rather than the subjective and conceptual aspects. Regarding the measurement of financial burden, many previous studies have only used a few items. Financial burden is dependent on the illness trajectories and duration of disease. In general, as the disease progresses, financial burden increases. The duration of the disease includes three steps (financial situations from the past, manifestation/diagnosis, and financial burden). Generally, patients and caregivers face the objective burden first and then experience the subjective burden. By considering multidimensionality, we found potential financial burden factors. Objective factors include loss of job/income, loss of saving/assets, resources, care-related expenses, budget constraints, and insurance. A subjective factor includes perceptions. In light of the aforementioned results, we redefine financial burden among patients with life-threatening illness and caregivers as subjective and adverse perception of financial status due to changes in objective financial situations after a patient’s diagnosis.

Implications. This study provides a more comprehensive conceptual description of financial burden. Our new definition of financial burden may help us better understand financial burden among patients with serious illness and their family caregivers. Based on the new definition of financial burden, future studies are required to develop a reliable and valid instrument for measuring financial burden among patients with life-threatening illness and their informal caregivers.