In the United States, parents and caregivers of children and youth with special health care needs (CYSHCN) must navigate complex, inefficient health care and health insurance systems to access the medical care, therapies, and support services their children need to stay healthy.1, 2, 3 In addition to the time they spend directly caring for their children, these caregivers are often tasked with scheduling appointments, coordinating care across multiple providers and health systems, managing health insurance enrollment and renewals, and ensuring timely payment of premiums and co-payments. These tasks often involve “administrative burdens” – caregivers must interpret complex eligibility rules, complete confusing and sometimes redundant paperwork, and wait for responses from providers or insurance companies.4 The time caregivers spend navigating these burdens may take away from their ability to provide for their children and support their health.

Previous studies have found that patient- and caregiver-facing administrative burdens can negatively impact health by reducing access to health insurance, medical care, and health-protective social service programs like the Supplemental Nutrition Assistance Program and the Special Supplemental Nutrition Program for Women, Infants, and Children.5, 6, 7 In a recent national survey of adults with health insurance, 73% reported performing at least one health care-related administrative task within the previous year, and 24% reported delaying or forgoing needed medical care as a result of these administrative tasks.8

Administrative burdens also have the potential to generate and perpetuate health disparities. Caregivers who are from minoritized groups may face a disproportionate share of health care related administrative burdens and may also have fewer resources to use in navigating these burdens.9, 10, 11, 12 Understanding and addressing inequities in administrative burdens and their downstream impacts on health may therefore help promote equitable child health outcomes.

Low-income and minoritized caregivers of CYSHCN may be particularly vulnerable to health care-related administrative burdens. Prior studies have found that many caregivers of CYSHCN report suboptimal mental health and forgone family income related to their child’s health condition.13, 14 Previous studies have also explored disparities in care coordination needs among caregivers of CYSHCN, with mixed results; one study using 2007 data found that caregivers of Black and Hispanic/Latinx children were more likely to report unmet care coordination needs,15 while another study using 2016 data found no significant association between child race and ethnicity and caregiver-reported care coordination needs.16 However, no prior studies have examined inequities in time spent arranging and coordinating care, which may be a more objective measure of care coordination burden than caregiver-reported unmet needs, and no previous studies have assessed the relationship between time spent coordinating care and probability of forgone health care.

In this study, we therefore aimed to use data from the 2018-2020 National Survey of Children’s Health, a nationally representative survey of caregivers of children ages 0-17 years, to (1) quantify weekly time spent coordinating care among caregivers of CYSHCN, (2) describe differences in time spent coordinating care for CYSHCN based on children’s race, ethnicity, insurance status, caregiver education level, household primary language, and household income, and (3) examine the association between time spent coordinating care and children’s access to needed medical care. We hypothesized that these analyses could reveal inequities in time spent coordinating care, highlight associations between time spent coordinating care and forgone health care, and thereby inform future interventions aimed at reducing care coordination burdens and ensuring equitable access to care.