Abstract
Objectives:
In the United States, caregivers of children and youth with special healthcare needs (CYSHCN) must navigate complex, inefficient health care and insurance systems to access medical care. We assessed for sociodemographic inequities in time spent coordinating care for CYSHCN and examined the association between time spent coordinating care and forgone medical care.
Methods:
This cross-sectional study used data from the 2018–2020 National Survey of Children’s Health, which included 102,740 children across all 50 states. We described time spent coordinating care for children with less complex SHCN (managed through medications) and more complex SHCN (resulting in functional limitations or requiring specialized therapies). We examined race-, ethnicity-, income-, and insurance-based differences in time spent coordinating care among CYSHCN and used multivariable logistic regression to examine the association between time spent coordinating care and forgone medical care.
Results:
Over 40% of caregivers of children with more complex SHCN reported spending time coordinating their children’s care each week. CYSHCN whose caregivers spent >5 hours/week on care coordination were disproportionately Hispanic, low-income, and publicly insured or uninsured. Increased time spent coordinating care was associated with an increasing probability of forgone medical care: 6.7% for children whose caregivers who spent no weekly time coordinating care versus 9.4% for <1 hour; 11.4% for 1–4 hours; and 15.8% for >5 hours.
Conclusion:
Reducing time spent coordinating care and providing additional supports to low-income and minoritized caregivers may be beneficial for pediatric payers, policymakers, and health systems aiming to promote equitable access to health care for CYSHCN.
Keywords: Care coordination, children with special health care needs
Introduction
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.1–3 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.5–7 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.9–12 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.
Study Design and Methods
Data and Population
The National Survey of Children’s Health (NSCH) is administered annually by the Health Resources and Service Administration’s Maternal and Child Health Bureau.17 The NSCH includes non-institutionalized children ages 0–17 years in all 50 states and the District of Columbia, recruited using address-based sampling. The 2018–2020 NSCH surveys were self-administered on paper or online by the parent or guardian of a randomly selected child in each sampled household. Data were weighted to be nationally representative and adjusted for the sampling design. The combined 2018–2020 NSCH dataset was comprised of 102,740 children (weighted sample size = 73,113,505), including 24,041 CYSHCN (weighted sample size = 14,023,598). The Children’s Hospital of Philadelphia institutional review board deemed this study exempt from the need for approval, given its use of publicly available deidentified data.
Time Spent Coordinating Care
Our primary variable of interest was families’ weekly time spent coordinating care. Time spent coordinating care was derived from a single NSCH survey item, “In an average week, how many hours do you or other family members spend arranging or coordinating health or medical care for this child?”.18 This question defines “arranging or coordinating health care” to include tasks such as making appointments and locating necessary health care services. Possible responses were, “None,” “Less than 1 hour a week,” “1–4 hours a week,” “5–11 hours a week,” and “11 or more hours a week.” In our multivariable logistic regression model, we combined the last two categories into a composite category, “5 or more hours per week.”
Presence and Complexity of Special Health Care Needs
We classified children in our study sample as having special health care needs using the CYSHCN screener.18 The first part of the screener asks whether a child has one of five different health-related needs: (1) use of a prescription medication; (2) above average use of medical, mental health, or educational services; (3) functional limitations compared with other children of the same age; (4) use or need of specialized therapies, such as physical therapy, occupational therapy, or speech therapy; and (5) treatment or counseling for emotional or developmental problems. Caregivers who endorse any of these needs are asked whether this need is due to a health condition, and if so, whether this condition has lasted or is expected to last for at least 12 months. Children who have one or more needs that are both related to a health condition and expected to last for at least 12 months are considered CYSHCN.
The NSCH further classifies CYSHCN into two sub-categories: (1) children with less complex needs, who have chronic conditions managed primarily through prescription medications; and (2) children with more complex needs, who meet one of the four other criteria above. Some prior analyses of NSCH data have additionally classified a subset of children with more complex needs as “children with medical complexity” based on their chronic conditions, health care utilization, and degree of functional limitations.1,13,19 We chose to use the predefined 2-category NSCH classification of complexity, similar to the approach used by Foster et al. and Bethell et al.14,20
Forgone Health Care
Forgone health care was coded as a binary variable and defined using a single NSCH survey item, “During the past 12 months, was there any time when this child needed health care but it was not received? By health care, we mean medical care as well as other types of care like dental care, vision care, and mental health services.”18 This outcome encompasses forgone medical, mental health, dental, and vision care.
Covariates
Child characteristics included in our analysis were age, caregiver-reported child race and ethnicity, biological sex, and insurance coverage. We recognize that race and ethnicity are social constructs and included these variables as covariates in our multivariable regression models because they may serve as proxies for the shared experiences of oppression and discrimination experienced by individuals in these groups, which may include the administrative burdens they face within and outside of health care systems.
As additional covariates, we selected several variables that we hypothesized might be associated with both time spent coordinating care and forgone medical care. We included complexity of health care needs, as children with increased medical complexity may require additional health care. We also adjusted for caregivers’ weekly time spent providing home health care, as we hypothesized that this may serve as an additional proxy for medical complexity. Time spent providing care was derived from a single NSCH survey item, “In an average week, how many hours do you or other family members spend providing health care at home for this child?”.18 This question defines “providing health care at home” to include tasks such as changing bandages and giving medications or therapies. Possible responses were, “None,” “Up to 1 hour a week,” “1–4 hours a week,” “5–11 hours a week,” and “11 or more hours a week.” In our multivariable logistic regression model, we combined the last two categories into a composite category, “5 or more hours per week.”
In addition, we adjusted for metropolitan (urban) versus non-metropolitan (rural) county of residence, as we hypothesized that residence in a rural county might be associated with both increased time spent on care coordination and increased rates of forgone medical care, since CYSHCN in these communities might need to travel farther to access care. Other household characteristics included as key covariates in our multivariable regression models were caregiver educational attainment, primary household language, and household income as a proportion of the federal poverty level. Caregiver race and ethnicity information were not available. Figure S1 shows our conceptual model for this study.
Statistical Analysis
We used descriptive statistics to examine time spent coordinating care among caregivers of children without SHCN, children with less complex SHCN, and children with more complex SHCN. We then restricted our sample to CYSHCN and used chi-squared tests to examine race, ethnicity, income, and insurance-based differences in time spent coordinating care. Lastly, we used multivariable logistic regression to examine the association between time spent coordinating care and forgone child health care for CYSHCN, after adjusting for covariates, and estimated the average marginal effect of increased time coordinating care on forgone child health care. Average marginal effects reflect the incremental increased risk associated with a given characteristic and are sometimes preferred to odds ratios in analyses of binary dependent variables, as they are less sensitive to differences in model specification and may be more readily interpretable.21,22 Analyses were conducted using STATA version 16.0 and included adjustments for survey weights across multiple years and for multiply imputed income data, as per published NSCH guidelines.23
Results
Time Spent Coordinating Care for Children with Special Health Care Needs
More than 40% of caregivers of children with more complex SHCN and more than 10% of caregivers of children with less complex SHCN reported spending some time each week arranging or coordinating care for their children (Figure 1). Among caregivers of children with more complex needs, 23.6% reported spending up to an hour each week coordinating care, 13.3% spent 1–4 hours per week, 2.1% spent 5–11 hours a week, and 2.5% spent >11 hours per week. This corresponds to an estimated 464,000 children with more complex SHCN across the United States whose caregivers spend 5 or more hours a week on care coordination.
Figure 1.
Distribution of weekly time spent coordinating care among caregivers of children with and without special health care needs. The results show the weighted proportion of caregivers of children with no special health care needs (SHCN), less complex SHCN, and more complex SHCN who reported spending no weekly time coordinating care and who reported spending up to 1 hour/week, 1–4 hours/week, 5–11 hours/week, or 11 or more hours a week arranging or coordinating health care for their children. Percentages and sample sizes above are weighted to represent the US population of children ages 0–17 years using NSCH survey weights.
Race, Ethnicity, Income, and Education-Based Differences in Time Spent on Care Coordination
As compared to all other CYSHCN, CYSHCN whose caregivers who spent >5 hours a week coordinating their care were disproportionately Hispanic (33.7% vs. 21.1%), publicly insured (50.0% vs. 36.7%) or uninsured (11.2% vs. 3.7%), and had a household income below the federal poverty level (38.9% vs. 23.1%) (Table 1). In addition, a greater proportion of these caregivers had had less than a high school education (11.8% vs. 6.9%) and spoke a primary language other than English (12.0% vs. 7.3%).
Table 1.
Child, Caregiver, and Household Demographic Characteristics by Time Spent Coordinating Care
| All CYSHCN (Weighted n = 14,023,598) | No weekly care coordination (Weighted n = 9,250,758) | Up to 1 hour/week (Weighted n = 2,753,648) | 1–4 hours/week (Weighted n = 1,425,050) | > 5 hours/week (Weighted n = 216,835) | p-value | |
|---|---|---|---|---|---|---|
| Child Age | ||||||
| 0–5 Years | 17.6% (16.6–18.8) |
16.2% (15.0–17.6) |
17.8% (15.6–20.1) |
23.9% (19.7–28.6) |
25.9% (18.4–35.1) |
<0.001 |
| 6–11 Years | 37.4% (36.2–38.8) |
38.2% (36.6–39.8) |
35.8% (33.3–38.4) |
35.3% (31.1–39.8) |
38.0% (29.9–47.0) |
|
| 12–17 Years | 44.9% (43.6–46.2) |
45.6% (43.9–47.2) |
46.4% (43.9–49.0) |
40.8% (36.0–45.8) |
36.1% (27.3–46.0) |
|
| Child Race and Ethnicity | ||||||
| Black | 16.2% (15.1–17.3) |
16.5% (15.2–17.8) |
13.0% (11.0–15.3) |
18.5% (14.9–22.8) |
18.2% (12.8–25.2) |
<0.001 |
| Hispanic | 21.5% (20.1–23.0) |
21.3% (19.5–23.2) |
19.6% (17.1–22.3) |
23.1% (18.1–28.9) |
33.7% (24.0–45.1) |
|
| White | 52.8% (51.4–54.2) |
52.4% (50.7–54.1) |
58.9% (56.1–61.6) |
50.3% (45.5–55.2) |
33.4% (26.6–40.9) |
|
| Multi-racial / Other | 9.5% (8.8–10.3) |
9.8% (8.9–10.7) |
8.6% (7.3–10.0) |
8.1% (6.4–10.2) |
14.7% (9.6 −21.7) |
|
| Child Insurance Status | ||||||
| Public | 37.3% (35.9–38.7) |
36.2% (34.5–38.0) |
35.1% (32.4–37.8) |
43.5% (38.7–48.5) |
50.0% (40.7–59.3) |
<0.001 |
| Private | 50.7% (49.4–52.1) |
53.4% (51.7–55.1) |
52.6% (49.9–55.3) |
39.6% (34.9–44.4) |
22.9% (16.3–31.0) |
|
| Public and Private | 8.0% (7.3–8.8) |
6.2% (5.5–7.0) |
9.2% (7.6–11.0) |
14.9% (11.5–19.1) |
15.9% (10.7–22.9) |
|
| Uninsured | 4.0% (3.4–4.6) |
4.2% (3.4–5.0) |
3.1% (2.3–4.3) |
2.0% (1.4–2.9) |
11.2% (6.8–17.8) |
|
| Highest Level of Caregiver Education | ||||||
| Less than high school | 7.2% (6.2–8.2) |
7.5% (6.3–9.0) |
4.9% (3.6–6.7) |
6.5% (4.3–9.6) |
11.8% (6.7–19.9) |
0.007 |
| High school or GED | 20.5% (19.3–21.8) |
21.4% (19.8–23.0) |
17.8% (15.7–20.3) |
19.7% (15.6–24.5) |
18.3% (13.4–24.5) |
|
| Some college or technical school | 24.3% (23.1–25.4) |
24.1% (22.8–25.5) |
23.4% (21.2–25.7) |
26.0% (22.0–30.4) |
28.9% (21.6–37.4) |
|
| College degree or more | 48.1% (46.7–49.4) |
47.0% (45.4–48.6) |
53.8% (51.2–56.5) |
47.8% (43.0–52.7) |
41.0% (31.7–50.9) |
|
| Primary Household Language | ||||||
| English | 92.5% (91.5–93.4) |
92.2% (90.8–93.4) |
94.4% (92.5–95.8) |
92.6% (89.1–95.1) |
88.0% (81.7–92.3) |
0.063 |
| Non-English | 7.5% (6.6–8.5) |
7.8% (6.6–9.2) |
5.6% (4.2–7.4) |
7.4% (4.9–10.9) |
12.0% (7.7–18.3) |
|
| Household Income as a Percentage of the Federal Poverty Level (FPL) | ||||||
| 0–99% FPL | 22.1% (20.8–23.4) |
21.3% (19.8–22.8) |
23.2% (18.7–27.8) |
34.2% (14.9–53.6) |
38.9% (29.6–49.0) |
<0.001 |
| 100–199% FPL | 22.3% (21.1–23.5) |
22.9% (21.4–24.4) |
18.7% (16.9–20.7) |
25.4% (21.3–29.9) |
22.8% (15.2–31.1) |
|
| 200–399% FPL | 26.5% (25.4–27.6) |
26.8% (25.5–28.2) |
26.1% (24.1–28.3) |
25.7% (22.3–31.6) |
20.5% (14.2–28.5) |
|
| > 400% FPL | 29.1% (28.0–30.3) |
29.1% (27.7–30.5) |
34.0% (31.7–36.4) |
24.9% (21.5–28.5) |
17.8% (13.1–23.8) |
|
Percentages reflect the proportion in each column. Values in parentheses indicate 95% confidence intervals for the corresponding proportion. This analysis was restricted to the 24,041 CYSHCN included in the 2018–2020 NSCH. Weighted sample sizes are shown in the top row. All percentages and sample sizes above are weighted to represent the US population of CYSHCN ages 0–17, using NSCH survey weights. Column 1 represents all CYSHCN, while columns 2–5 represent the subset of CYSHCN whose caregivers spent no weekly time on care coordination, up to 1 hour/week, 1–4 hours/week, or > 5 hours/week.
Association of Time Spent Coordinating Care with Forgone Health Care
In multivariable regression models, we found that increasing time spent coordinating care was associated with a greater probability of forgone child health care (Table 2). In our analysis of average marginal effects, we found that while CYSHCN whose caregivers spent no weekly time on care coordination had only a 6.7% probability of forgone health care, this probability increased to 11.4% when caregivers spent 1–4 hours/week on care coordination and to 15.8% when caregivers spent >5 hours a week coordinating care. Our analysis of odds ratios showed similar results; children of caregivers who spent more time coordinating their care had greater odds of forgone medical care (adjusted odds ratio (aOR) 1.46, 95% confidence interval (CI) 1.02–2.10 for up to 1 hour; aOR 1.83, 95% CI 1.09–3.07 for 1–4 hours; aOR 2.73, 95% CI 1.38–5.42 for >5 hours).
Table 2.
Association of Time Spent Coordinating Care with Forgone Child Health Care for CYSHCN
| Adjusted Odds Ratio | 95% CI | Average Marginal Effect | |
|---|---|---|---|
| Weekly Time Spent Coordinating Care | |||
| None | Ref | - | 6.7% |
| Up to 1 hour | 1.46 | 1.02, 2.10 | 9.4% |
| 1 to 4 hours | 1.83 | 1.09, 3.07 | 11.4% |
| 5 or more hours | 2.73 | 1.38, 5.42 | 15.8% |
| Weekly Time Spent Providing Health Care | |||
| None | Ref | - | 7.4% |
| Up to 1 hour | 1.26 | 0.74, 2.14 | 9.0% |
| 1 to 4 hours | 1.49 | 0.95, 2.32 | 10.4% |
| 5 or more hours | 1.35 | 0.81, 2.25 | 9.6% |
| Child Age | |||
| 0–5 | Ref | - | 5.9% |
| 6–11 | 1.57 | 1.00, 2.46 | 8.9% |
| 12–17 | 1.56 | 1.00, 2.41 | 8.8% |
| Child Sex | |||
| Female | Ref | - | 8.0% |
| Male | 1.10 | 0.84, 1.46 | 8.7% |
| Child Race and Ethnicity | |||
| Non-Hispanic White | Ref | - | 7.9% |
| Non-Hispanic Black | 0.84 | 0.59, 1.19 | 6.7% |
| Hispanic | 1.35 | 0.87, 2.08 | 10.2% |
| Non-Hispanic Multi-racial / Other | 1.16 | 0.74, 1.83 | 9.0% |
| Child’s Insurance | |||
| Private | Ref | - | 7.7% |
| Public | 0.97 | 0.63, 1.50 | 7.5% |
| Public and Private | 1.31 | 0.75, 2.29 | 9.7% |
| Uninsured | 3.05 | 1.84, 5.03 | 19.2% |
| Child’s Presence and Complexity of Special Health Care Needs | |||
| Less complex | Ref | - | 4.5% |
| More complex | 2.19 | 1.43, 3.36 | 9.2% |
| Highest Level of Caregiver Education | |||
| Less than high school | Ref | - | 6.5% |
| High school or GED | 1.18 | 0.63, 2.20 | 7.5% |
| Some college or technical school | 1.85 | 1.00, 3.45 | 11.1% |
| College degree or more | 1.14 | 0.63, 2.08 | 7.3% |
| Primary Household Language | |||
| English | Ref | - | 8.3% |
| Non-English | 0.98 | 0.45, 2.13 | 8.2% |
| Area of Residence | |||
| Metropolitan Statistical Area (Urban) | Ref | - | 8.1% |
| Non-Metropolitan Statistical Area | 0.81 | 0.58, 1.12 | 8.1% |
| Household Income as a Percentage of the Federal Poverty Level (FPL) | |||
| 0–99% FPL | Ref | - | 8.7% |
| 100–199% FPL | 1.16 | 0.76, 1.77 | 9.9% |
| 200–399% FPL | 1.01 | 0.64, 1.59 | 8.7% |
| > 400% FPL | 0.67 | 0.38, 1.16 | 6.1% |
Adjusted odds ratios presented above are from multivariable regression models including child age, race, sex, insurance status, presence and complexity of special health care needs, and time spent providing health care, as well as family income, primary household language, metropolitan or non-metropolitan statistical area of residence, and caregiver education level as covariates. Bolded adjusted odds ratios indicate statistical significance. Average marginal effects were obtained using the “margins” command in STATA and represent the predicted probability of forgone child health care corresponding to each covariate.
Other covariates associated with a greater probability of forgone healthcare in our regression model were having more complex special health care needs (9.2% vs. 4.5% for less complex needs) and lack of health insurance (19.2% vs. 7.7% for private health insurance). Increased time spent providing health care was not associated with a significantly greater probability of forgone care. Our observed association between weekly time spent on care coordination and forgone child health care persisted after adjusting for time spent providing health care and complexity of special health care needs, suggesting that these indicators of increased medical complexity could not fully explain the relationship between time spent coordinating care and forgone care.
Discussion
In this secondary analysis of a national survey, we found that over 10% of caregivers of less complex CYSHCN and over 40% of caregivers of more complex CYSHCN reported spending time coordinating care for their children each week. CYSHCN whose caregivers spent 5 or more hours a week arranging or coordinating care were disproportionately Hispanic, low-income, and publicly-insured or uninsured. After adjusting for demographic characteristics and indicators of medical complexity, we found that increased time spent coordinating care was associated with a greater probability of forgone health care among CYSHCN.
These results are consistent with a previous study showing that health care-related administrative burdens can lead to delayed or forgone health care in adults.8 Although we cannot demonstrate a causal relationship between time spent coordinating care and forgone health care in this cross-sectional study, it is possible that, as in this prior survey of adults, caregivers in our study sample either chose to or were forced to forgo care for their children because of difficulty with scheduling appointments, accessing providers, or coordinating payment of medical bills or insurance premiums.8 Our findings are also in line with prior studies showing that social service related administrative burdens can lead low-income children and adults to forgo participation in health-promoting public benefit programs.4,7,24
The ethnicity, income, and insurance-based differences in time spent coordinating care noted in this study suggest that health- and social service-related administrative burdens may be particularly difficult to navigate for those without systemic privilege and financial resources, as well as those without reliable and consistent insurance. Previous studies in adults and children have noted race, ethnicity, and insurance-based disparities in primary care appointment availability, time spent traveling to appointments, and time spent waiting to be seen in the emergency room or clinic.9,25–27 Our study builds on this work, and on prior studies demonstrating disparities in caregiver-reported care coordination needs, both by using time spent coordinating care as a novel measure of caregiver burden and by using more recent 2018–2020 data, which may more closely reflect the current state of burdens faced by CYSHCN and their caregivers.15,16
Almost 40% of caregivers in our study who reported spending >5 hours a week on care coordination had household incomes below the federal poverty level. For these low-income caregivers, time spent coordinating their children’s care may impact their ability to maintain stable employment and provide for their families’ basic needs, placing their children at greater risk of poor health outcomes.14 Previous studies have shown that children with both chronic medical conditions and social needs such as food insecurity or housing instability have worse caregiver-reported health and increased acute care utilization as compared to children with chronic conditions or social risk factors alone.11,28,29
Our findings also point to particular challenges associated with caring for CYSHCN who are Medicaid-insured or uninsured. All Medicaid-insured families have to complete recertification paperwork at least once a year to ensure that their children continue to receive benefits, and because Medicaid eligibility is based on monthly household income, families with short-term income fluctuations may have to complete this paperwork multiple times each year.30 These recertification requirements can represent a substantial burden, particularly for caregivers of CYSHCN with birth-onset disabilities who should qualify for Medicaid throughout childhood regardless of their household income. Fortunately, the 2023 Consolidated Appropriations Act requires all states to implement 12-month continuous eligibility for all Medicaid and CHIP-insured children by 2024, and some states are exploring multi-year continuous eligibility for children, which could further decrease burdens associated with recertification.31,32 In addition to burdens related to recertification, some families may have difficulty finding providers who will accept their Medicaid-insured child for care; one recent study suggests that as many as one-third of all physicians contracted with Medicaid managed care plans see fewer than 10 Medicaid-insured patients a year.33
We observed greater inequities in care coordination burden based on ethnicity, insurance type, and household income, than on primary language and caregiver educational attainment. This finding may suggest that as compared to discrimination, poverty, and insurance-related administrative barriers, language and education barriers play less of a role in determining care coordination burden. Alternatively, this finding may reflect greater heterogeneity in care coordination burden among caregivers who speak languages other than English or have lower levels of educational attainment. Future studies could gather more detailed information on household language, caregiver education and health literacy, and more precisely describe care coordination burdens, in order to characterize these relationships more completely.
Taken together with previous studies showing that caring for a medically complex child is associated with forgone family income and worse caregiver mental health,13,14 our results suggest that health systems and payers may need to provide additional care coordination supports to ensure equitable access to care for low-income, publicly-insured, and minoritized caregivers of CYSHCN. Health systems may be able to mitigate care coordination burdens for CYSHCN in part by ensuring equitable access to patient portals and to telehealth primary and subspecialty care.34,35 At the payer level, interventions that simplify the process of applying for and renewing Medicaid and improve provider accessibility could reduce care coordination burdens.36 Streamlining Medicaid redetermination processes will be particularly important as the continuous coverage provision under the COVID-19 Public Health Emergency unwinds.37
Health systems and payers should also consider investing in community health worker programs that could support low-income and minoritized caregivers in meeting both their care coordination needs and their unmet social needs. Community health workers are trusted individuals who often share a background, demographic characteristic, and lived experiences with the patients and families they serve and are therefore optimally positioned to provide family-centered health care navigation support.38 Previous studies in both children and adults have shown that community health worker programs can improve patient-centered outcomes and quality of care while reducing acute care utilization, making them a worthwhile investment for pediatric health systems and payers serving CYSHCN.39–41
Two recent federal policy innovations may also help guide and support state Medicaid agencies in improving care coordination supports for CYSHCN.42 The Center for Medicare and Medicaid Innovation’s Integrated Care for Kids model, which began in 2020, aims to use cross-sector collaborations and care navigation to improve health outcomes for children with complex medical and social needs and to identify sustainable alternative payment models that support improved care coordination.43 The 2019 Advancing Care for Exceptional Kids (ACE Kids) Act, which went into effect in October 2022, allows state Medicaid agencies the option to reimburse for enhanced care coordination services provided through “health homes” created for children with complex chronic conditions.44 If implemented with a focus on health equity, these and other programs and policies aimed at reducing care coordination burdens could help ensure equitable access to care for CYSHCN.
Limitations and Future Directions
Our findings should be considered in the context of several limitations. First, the cross-sectional structure of this survey precludes us from making inferences about the causal nature and directionality of the relationship between time spent coordinating care and children’s access to care. Second, because we were limited by available NSCH data, which do not include detailed information about children’s diagnoses, we were unable to fully control for medical complexity, which is likely an important confounder of the relationship between time spent coordinating care and forgone health care. In addition, NSCH data are based on caregiver self-report and may therefore be impacted by recall bias.
Future longitudinal quantitative studies that assess time spent coordinating care and then examine subsequent patterns of health and health care utilization using both caregiver-reported and health system-level data could more precisely illuminate potential causal relationships, as well as how these relationships may vary based on caregivers’ income, race, ethnicity, primary language, and insurance status. In addition, future qualitative studies exploring caregivers’ perspectives on arranging and coordinating health care for their children could aid in the identification of specific opportunities for both downstream, family-level and upstream, systems-level interventions aimed at reducing these burdens.
Conclusion
More than 40% of caregivers of children with complex SHCN spend time coordinating their children’s care each week, and these burdens fall disproportionately on Hispanic, low-income, and publicly insured caregivers. Increased caregiver time spent coordinating care is associated with a greater probability of forgone medical care for CYSHCN. Health systems, payers, and policymakers should prioritize streamlining health care and health insurance systems and implementing innovative models of care coordination support in order to mitigate inequities in care coordination burdens and ensure equitable access to care for CYSHCN.
Supplementary Material
What’s New.
Children whose caregivers spend 5 or more hours/week arranging or coordinating their children’s care are disproportionately Hispanic, low-income, and publicly insured or uninsured. Increased time spent coordinating care is associated with greater probability of forgone health care among CYSHCN.
Funding/Support:
All phases of this study were supported by Agency for Healthcare Research and Quality grant F32HS028555 to Dr. Vasan and National Institutes of Health grant K23HL136842 to Dr. Kenyon.
Role of Funder/Sponsor:
The AHRQ and NIH had no role in the design and conduct of the study.
Footnotes
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Conflict of Interest Disclosures (includes financial disclosures): The authors have no conflicts of interest relevant to this article to disclose.
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