Development and Validation of a Family Caregiver Constraint Index

Abstract

Key Points Question Is an area-based index of barriers to family caregiving associated with hospital-based health outcomes? ab-zoi260438-1 Findings This cross-sectional study of an index of barriers to family caregiving used data for 329 725 481 persons from the 2017 to 2021 American Community Survey 5-year estimates. The 13-item Family Caregiver Constraint Index mapped to 4 subindices: competing demands (work and childcare responsibilities), long-distance work commute, income constraint, and recent immigration, with higher scores indicating greater barriers to synchronous family caregiving. ab-zoi260438-2 Meaning Preliminary testing of the Family Caregiver Constraint Index suggests the validity of this index to measure caregiving-related domains that can be barriers to family caregiver engagement and their association with care recipient health outcomes. ab-zoi260438-3 key-points This cross-sectional study reports the development and validation of the Family Caregiver Constraint Index, a neighborhood-based index measuring factors potentially affecting caregiver engagement with health care systems. teaser electronic Importance Individuals with acute, chronic, and life-limiting illness often rely on family caregivers to navigate health care, but caregivers’ ability to spend time providing support may be limited by socioeconomic constraints, such as inflexible work hours. ab-zoi260438-4 Objective To develop and validate the Family Caregiver Constraint Index (FCCI), a summary measure of area-based factors that can affect synchronous caregiver engagement with health care systems. ab-zoi260438-5 Design, Setting, and Participants This cross-sectional study used 2017 to 2021 American Community Survey 5-year estimate data for 32 789 populated US 5-digit zip code tabulation areas (neighborhoods) and selected candidate indicators relevant to caregiving-related domains. Initial variable selection was guided by engagement with community members with chronic disease and/or family caregiver experience. Analyses were conducted between June 2023 and July 2025. ab-zoi260438-6 Main Outcomes and Measures Principal components analysis identified and quantified distinct subindices and correlations among indicators, which were used to construct scores for subindices and create a standardized summary FCCI score. The association between the FCCI and hospital-based health care outcomes from the Dartmouth Atlas of Health Care was examined using crude and adjusted linear regression models that accounted for year and state in which the HSA is located. ab-zoi260438-7 Results The American Community Survey sample from which the FCCI is developed draws from the US population of 329 725 481 persons, of whom 166 518 866 (50.5%) are female and 52 888 621 (16.0%) are aged 65 years or older. The 13-item FCCI mapped to 4 subindices: competing demands (work and childcare responsibilities, 2 items), long-distance work commute (2 items), income constraint (5 items), and recent immigration (4 items). Higher FCCI scores were associated with greater inpatient days (increase of 0.80 day; 95% CI, 0.71-0.89 day;< .001) and intensive care unit and/or coronary care unit days (increase of 0.48 day; 95% CI, 0.40-0.56 day;< .001) during the last 6 months of life, higher percentage of in-hospital deaths (increase of 1.06%; 95% CI, 0.79%-1.34%;< .001) and percentage of deaths that included an intensive care unit and/or coronary care unit admission (increase of 1.27%; 95% CI, 0.99%-1.54%;< .001). ab-zoi260438-8 Conclusions and Relevance In this cross-sectional study of barriers to family caregiver engagement, the FCCI ranked neighborhoods based on area-level factors that adversely impact the time available for family caregivers to be synchronously present for their care recipient’s health care visits. Future research should examine the relationships among FCCI scores, caregiver engagement, hospital care, caregiver well-being, and patient health outcomes. ab-zoi260438-9