Identifying Measures of Financial Burden for Families Dealing with Serious Illnesses: A Systematic Review

BACKGROUND. Serious illness often contributes to financial burden for families. Evidence suggests that nearly a third of families lose all or most of their savings when a serious or life-threatening illness is present. Patients or family members may stop working due to the demands of the illness or caregiving. Their assets, income, and savings also become threatened. We need valid measures to better understand and address financial burden on families. Although, some measures of financial burden exist, no study has systematically identified, and reviewed the qualities of the available measures of financial burden for families dealing with serious illness.

PURPOSE. To identify measures of financial burden for families dealing with serious illness through systematic review; and report evidence of validity and reliability for the identified measures.

METHODS. Search Strategy. A systematic search was conducted using electronic databases (e.g., Pubmed, EBSCOhost, Google Scholar). Several key words were combined in the search, including Financial (burden* OR hardship* OR strain* OR stress*) AND dying OR end-of-life OR end stage (cancer OR disease) OR hospice OR palliative care. A supplemental environmental scan was also conducted using a targeted internet search and review of publically available research data (e.g., the Health and Retirement Study [HRS]).

Selection Criteria. The following criteria were required for inclusion in the review: English language; since 2006 (Hanratty et al. [2007] conducted a review before 2006); and peer reviewed.

Data Collection and Analysis. After the screening process and eliminating duplicated instruments, 17 eligible measurements were identified. Data from eligible measures were extracted based on the selection criteria, and data were analyzed according to the research objectives.

RESULTS. Among the 17 identified measures, 15 focus exclusively on caregivers (rather than patients) and the remaining two are designed for the general population of older adults or households affected by cancer. More than half of measures (53%) consisted of a single item inquiring about financial burden. The majority of measures (69%) focused on subjective burden, while there was a lack of measures that focused on objective burden (31%). Most measures had data on reliability and validity, but many of the single-item measures of financial burden lacked information about validity or reliability.

IMPLICATIONS. Our systematic review examined financial burden measures appropriate for families dealing with serious illness. Simple questions might be convenient and low burden for study participants. However, one-item measures may not capture the complex multidimensional aspects of financial burden. Thus, valid and comprehensive measures are needed because financial burden is an important issue for both caregivers and patients. Such measures can provide social workers with important evidence to assess patient/family needs. Furthermore, measures of financial burden (both objective and subjective) are essential for social work research to understand the prevalence of these concerns and to test interventions. Future research should consider patients’ perspectives (patients often have differing opinions about finances, e.g., many want to leave an inheritance), and perhaps evaluate alternative measures of objective financial burden. Also, to minimize financial burden on patients and families, multidisciplinary approaches should be developed and tested.