Identifying and Measuring Caregiver Burdens: A Scoping Review

Area of Science:

• Health Economics
• Caregiver Studies
• Sociology

Background:

• Unpaid caregiving imposes substantial financial, time, and quality-of-life burdens on individuals.
• Existing research on disease burdens inadequately addresses the experiences and costs associated with unpaid caregivers.
• There is a need to better understand and quantify the costs borne by unpaid caregivers.

Purpose of the Study:

• To conduct a scoping literature review to identify instruments used for measuring caregiver burden.
• To inform future research on the economic costs associated with unpaid caregiving.
• To assess the characteristics of existing caregiver burden measurement tools.

Main Methods:

• Systematic review of articles estimating costs or burdens of unpaid caregiving in the United States.
• Inclusion of studies using survey or cohort designs with quantitative data analysis.
• Identification and analysis of survey instruments and other data sources used to measure caregiver burden and costs.

Main Results:

• 27 unique survey instruments were identified across 46 articles.
• Of these, 89% were validated, 46% were publicly available, and 54% were caregiver-specific.
• 39% of studies developed custom questionnaires, highlighting a lack of standardized tools.
• Six non-survey data sources were also identified for cost estimation.

Conclusions:

• The heterogeneity of measurement tools hinders cross-study comparability.
• There is a critical need for standardized, validated, and accessible instruments to accurately measure caregiver burden.
• Improved measurement is essential for advancing research and improving outcomes for patients and their caregivers.