Feelings of Being Overwhelmed by Demands of Caring for Children with Special Health Care Needs (CSHCN) During Pandemic
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- Definition: Estimated percentage of adults with caregiving responsibilities for children with special health care needs (CSHCN) ages 0-17, by frequency of feeling overwhelmed by the day-to-day demands of providing medical or therapeutic care for their CSHCN in the period after the COVID-19 outbreak in March 2020 (e.g., in Wave 4, 46.6% of California caregivers of CSHCN had sometimes felt overwhelmed by the demands of caring for their CSHCN during the pandemic).
- Data Source: Family Experiences During the COVID-19 Pandemic. (Jun. 2022). Questionnaire: American Academy of Pediatrics, Centers for Disease Control and Prevention, Prevent Child Abuse America & Tufts Medical Center; California oversample: Lucile Packard Foundation for Children's Health & California Essentials for Childhood Initiative (California Dept. of Public Health, Injury and Violence Prevention Branch & California Dept. of Social Services, Office of Child Abuse Prevention).
- Footnote: Children with special health care needs (CSHCN) have or are at increased risk for a chronic physical, developmental, behavioral, or emotional condition and require health and related services of a type or amount beyond that required by children generally. The questionnaire was administered during the following periods: Nov. 9 – Dec. 11, 2020 (Wave 1); Mar. 22 – Apr. 12, 2021 (Wave 2); Jul. 8 – Jul. 27, 2021 (Wave 3); Jun. 29, 2022 (Wave 4). These data are subject to both sampling and nonsampling error. The notation S refers to estimates that have been suppressed because the margin of error is 10 percentage points or greater. The annotation [!] indicates that the estimate’s margin of error is at least 5 percentage points but less than 10 percentage points.
Learn More About Family Experiences During the COVID-19 Pandemic
- Measures of Family Experiences During the COVID-19 Pandemic on Kidsdata.org
On kidsdata.org, measures of how children and families in California are faring during the COVID-19 pandemic come from a national questionnaire, Family Experiences During the COVID-19 Pandemic. Caregivers with children ages 0-17 are asked a series of questions relating to the pandemic's impact on family economic security, public service use, emotional and behavioral experiences, health care, child care, and education. Estimates based on their responses are available for California and seven sub-state regions (Los Angeles County and six county groups). At the state level, data also are broken down by household income level, caregiver's race/ethnicity, and for families with and without children with special health care needs (CSHCN).The questionnaire was designed by the American Academy of Pediatrics (AAP) in collaboration with the Centers for Disease Control and Prevention (CDC), Prevent Child Abuse America (PCAA), and Tufts Medical Center's Healthy Outcomes from Positive Experiences (HOPE). In California, the Lucile Packard Foundation for Children's Health (LPFCH), the California Department of Social Services (CDSS) and California Department of Public Health's (CDPH's) Essentials for Childhood Initiative (EfC), and CDPH's Office of Suicide Prevention (OSP) funded an oversample of the questionnaire in order to improve the reliability of findings for sub-state regions and for families with CSHCN.
For more information about the questionnaire, see Child and Family Well-Being During the COVID-19 Pandemic.
- Family Experiences During the COVID-19 Pandemic
- Children's COVID-19 Vaccination Status
- Caregiver Reasons for Not Vaccinating Children
- Concern for Children's Safety Following Relaxed Public Health Measures
- Receipt and Delivery of Children’s Health Care During Pandemic
- Adequacy of Telehealth for Children's Health Care During Pandemic
- Availability of Telehealth for Mental Health Care
- Use of Telehealth for Mental Health Care During Pandemic
- Effectiveness of Telehealth for Mental Health Care During Pandemic
- Caregiver Preferences for Telehealth and In-Person Mental Health Care
- Children's School Arrangement
- Children’s School Currently Closed
- Children’s School Ever Closed During Pandemic
- Positive but Stressful Experiences Helping Children with Schoolwork
- Positive and Stressful Experiences Helping Children with Schoolwork, by Type
- Concern That Children Are Falling Behind at School
- Children's Progress Towards Catching Up at School
- Children’s Activities Currently Disrupted, by Type of Disruption
- Children’s Activities Ever Disrupted During Pandemic, by Type of Disruption
- Children’s Informal Social Activities Currently Canceled
- Children’s Informal Social Activities Ever Canceled During Pandemic
- Young Children’s Vaccinations Currently Postponed
- Young Children’s Vaccinations Ever Postponed During Pandemic
- Caregiver's Employment Status
- Change in Caregiver's Employment During Pandemic
- Change in Caregiver's Working Hours During Pandemic
- Reduction in Caregiver's Working Hours to Care for Children or Others
- Duration of Caregiver's Reduced Working Hours
- Caregiver Quit or Changed Jobs During Pandemic
- Change in Household Financial Situation During Pandemic
- Current Use of Social Safety Net Resources
- Social Safety Net Resources Ever Used Before and During Pandemic
- Use of CalFresh Before and During Pandemic
- Use of Food Bank Services Before and During Pandemic
- Use of Free or Reduced Price School Meals Before and During Pandemic
- Use of Public Health Insurance Before and During Pandemic
- Use of Women, Infants, and Children (WIC) Program Before and During Pandemic
- Activities with Children in Past Week
- Outdoor Activities with Children in Past Week
- Reading with Children in Past Week
- Daily Opportunities for Children to Have Fun
- Caring Adults Outside of the Home
- People with Whom Children Spent Four or More Hours Weekly Before Pandemic
- People with Whom Children Spent Four or More Hours in Past Week
- Adverse Childhood Experiences, by Number
- Adverse Childhood Experiences, by Type
- Adverse Childhood Experiences (Caregiver Retrospective), by Number
- Intimate Partner Violence Against Caregivers
- Physical and Harsh Verbal Discipline of Children in Past Week
- Feelings of Anger Toward Children in Past Week
- Feelings of Closeness to Children During Pandemic
- Concern for Children’s Emotional or Mental Health in Past Month
- Children Who Received Needed Mental Health Counseling in Past Year (California Only)
- Reasons for Children Not Receiving Needed Mental Health Counseling
- Caregiver Confidence in Ability to Control Important Things in Past Month
- Caregiver Confidence in Ability to Control Important Things During Pandemic
- Caregiver Feelings of Stress and Accumulating Difficulties in Past Month
- Caregiver Feelings of Stress and Accumulating Difficulties During Pandemic
- Caregiver Self-Care Activities in Response to Stress in Past Month
- Caregiver Substance Use in Response to Stress in Past Month
- People from Whom Caregiver Sought Support in Past Month
- Change in Race/Ethnicity Discrimination Against Caregiver During Pandemic
- Change in Sexual Orientation Discrimination Against Caregiver During Pandemic
- Care Provided to Children with Special Health Care Needs (CSHCN) in Past Week
- Services Accessed Before Pandemic to Support Children with Special Health Care Needs (CSHCN)
- Services Ever Accessed During Pandemic to Support Children with Special Health Care Needs (CSHCN)
- Services Accessed Currently to Support Children with Special Health Care Needs (CSHCN)
- Positive but Stressful Experiences Helping Children with Special Health Care Needs (CSHCN) with Medical Care (California Only)
- Positive and Stressful Experiences Helping Children with Special Health Care Needs (CSHCN) with Medical Care, by Type (California Only)
- Feelings of Being Overwhelmed by Demands of Caring for Children with Special Health Care Needs (CSHCN) Before Pandemic
- Feelings of Being Overwhelmed by Demands of Caring for Children with Special Health Care Needs (CSHCN) During Pandemic
- Change in Feelings of Being Overwhelmed by Demands of Caring for Children with Special Health Care Needs (CSHCN) in Past Month (California Only)
- Characteristics of Children with Special Needs
- Family Income and Poverty
- Student Demographics
- Early Care and Education
- Food Security
- Childhood Adversity and Resilience
- Children with Adverse Experiences (Parent Reported), by Number (CA & U.S. Only)
- Children with Adverse Experiences (Parent Reported), by Type (CA & U.S. Only)
- Children with Two or More Adverse Experiences (Parent Reported), by Race/Ethnicity (CA & U.S. Only)
- Prevalence of Childhood Hardships (Maternal Retrospective)
- Prevalence of Adverse Childhood Experiences (Adult Retrospective; CA Only)
- Housing Affordability and Resources
- Impacts of Special Health Care Needs on Children and Families
- Health Care
- Medicaid (Medi-Cal) or Children's Health Insurance Program (CHIP) Coverage
- Medicaid (Medi-Cal) or CHIP Coverage, by Age Group (California & U.S. Only)
- Medicaid (Medi-Cal) and CHIP Yearly Enrollment (California & U.S. Only)
- Medi-Cal Average Monthly Enrollment
- Medical Care Delayed or Forgone in Past Year
- Intimate Partner Violence
- Why This Topic Is Important
Before the COVID-19 pandemic, millions of U.S. families already were struggling with poverty, food insecurity, housing instability, mental illness, and difficulty accessing quality health care, education, and other resources (1, 2, 3). The onset of the pandemic dramatically worsened these issues, leaving many parents out of work or with reduced incomes and struggling to meet their families’ basic needs (3, 4). At the same time, families grappled with child care and school closures, shifts to remote learning and working, and disconnection from extended family, friends, and other social supports (3). Many families also experienced illness and the loss of loved ones due to the disease (2). Not surprisingly, mental health problems increased for both children and parents during the pandemic (3).
Some families were particularly vulnerable to the COVID-19 crisis, including those already struggling to make ends meet, hourly workers and those with unstable employment, families of color (who faced inequities in health outcomes and access to care before the pandemic), and families with young children or children with special health care needs (2, 3, 4, 5). The pandemic's effects on young people are of particular concern, as adverse childhood experiences, especially in early childhood, can have negative, long-term impacts on health and well being (6). The more traumatic events a child experiences, the more likely the impact will be substantial and long lasting (6).
Every effort should be made to ensure that children and families recover fully from the pandemic and that their physical, emotional, educational, and material needs are met consistently. Beyond meeting basic needs, children also need positive experiences and stable, nurturing relationships and environments in order to thrive (6).For more information, see kidsdata.org’s Research & Links section.
Sources for this narrative:
1. Federal Interagency Forum on Child and Family Statistics. (2021). America's children: Key national indicators of well-being, 2021. Retrieved from: https://www.childstats.gov/americaschildren21
2. Barr, A., et al. (2022). The pandemic showed why social and structural determinants of health matter. Now it's time for policymakers to act. Brookings Institution. Retrieved from: https://www.brookings.edu/blog/how-we-rise/2022/02/18/the-pandemic-showed-why-social-and-structural-determinants-of-health-matter-now-its-time-for-policymakers-to-act
3. Panchal, N., et al. (2021). Mental health and substance use considerations among children during the COVID-19 pandemic. Kaiser Family Foundation. Retrieved from: https://www.kff.org/coronavirus-covid-19/issue-brief/mental-health-and-substance-use-considerations-among-children-during-the-covid-19-pandemic
4. Gassman-Pines, A., et al. (2020). COVID-19 and parent-child psychological well-being. Pediatrics, 146(4), e2020007294. Retrieved from: https://publications.aap.org/pediatrics/article/146/4/e2020007294/79655/COVID-19-and-Parent-Child-Psychological-Well-being
5. Joiner-Hill, A. (2022). Caregiving in the context of COVID-19: Year one summary report. Magnolia Detroit Consulting. Retrieved from: https://downloads.aap.org/AAP/PDF/COVID_Family_Snapshot_Y1_Summary_Report_FINAL.pdf
6. Bhushan, D., et al. (2020). Roadmap for resilience: The California Surgeon General's report on adverse childhood experiences, toxic stress, and health. Office of the California Surgeon General. Retrieved from: https://osg.ca.gov/sg-report
- How Children Are Faring
The COVID-19 pandemic remained a source of disruption and stress for many California families more than two years after outbreak, according to estimates from the fourth wave of a questionnaire administered in June 2022. At the time of questionnaire, a third (33%) of adults with caregiving responsibilities for children ages 0-17 statewide had experienced feelings of nervousness or stress always or most of the time in the previous month, and 23% had felt difficulties piling up so high that they could not be overcome. Overall, fewer than 2 in 5 (36%) felt confident in their ability to control important things in their lives at least most of the time.
Many caregivers expressed concern for their children's physical, emotional, and academic well-being. An estimated 58% were more than slightly concerned for their children's safety following the rollback of masking and other pandemic-related public health measures. At the time of questionnaire, the oldest child of just over half (53%) of caregivers statewide was fully vaccinated against COVID-19. Caregivers also expressed concern for their children's academic progress, with 35% more than slightly concerned that their youngest school-aged child was falling behind at school. At the time of questionnaire—near the end of the 2021-22 school year—the youngest school-aged child of an estimated 42% of caregivers had fallen behind at school during the 2019-20 or 2020-21 school years and still hadn't caught up. Similarly, 36% of caregivers were more than slightly concerned for their oldest child's emotional or mental health in the previous month. During the year prior to questionnaire, among caregivers whose oldest child needed psychological or emotional counseling from a mental health professional, 59% had received services. Estimates of children's receipt of needed mental health counseling were higher among caregivers in households with children with special health care needs (CSHCN) (62%) when compared with households without CSHCN (52%).In Wave 4, an estimated 45% of California caregivers had experienced a negative overall impact on their household financial situation during the pandemic, up from 32% less than a year earlier in Wave 3 (July 2021). Use of social safety net resources remained high in Wave 4: Among caregivers who had used safety net resources at any time during the pandemic (60%), a large majority (more than 3 in 4) were using them at the time of questionnaire. Across waves, caregivers in lower-income households were more likely to have accessed safety net resources in the period after the COVID-19 outbreak, to have suffered negative overall financial impacts, and to have experienced long-term loss of income. In Wave 4, more than 1 in 5 caregivers (22%) with annual household incomes below $30,000 had experienced a reduction in working hours due to the pandemic lasting more than a year, compared with fewer than 1 in 15 caregivers (6%) with household incomes of at least $100,000.
At the same time, the pandemic revealed family and community strengths. In Wave 4, caregivers had sought help in the previous month from their partner or spouse (30%), relatives (28%), friends (22%), and therapists or counselors (11%). Outside of the home, the oldest child of 84% of caregivers had an adult who cared about them. Nearly all caregivers (95%) had participated in recreational activities with their children in the previous week, and the children of an estimated 63% had opportunities to have fun in each of the previous seven days.
- Policy Implications
The COVID-19 pandemic led to increases in illness, mortality, poverty, hunger, unemployment, housing instability, social isolation, mental health problems, and other hardships for U.S. families (1, 2). This crisis exacerbated existing economic problems and inequities, with financial difficulties disproportionately affecting lower-income families and people of color (1, 2). It also underscored inequities in the health care system and in social determinants of health, as vulnerable populations who have long experienced disparities in access to care and health outcomes were hit hardest by COVID-19 (3, 4).
The potential effects of this crisis on children are particularly concerning, as adverse childhood experiences (ACEs)—traumatic conditions and events such as poverty, family mental health problems, and caregiver death, among others—can have harmful, lifelong effects (5). For example, children exposed to multiple ACEs are more likely to develop negative health behaviors and chronic diseases in adulthood (5). Policymakers can help children and families recover from the effects of the pandemic, achieve economic stability, and access critical services including quality medical, mental health, and child care (3, 6, 7). Policymakers also can work toward ensuring that all families have equitable opportunities to help their children thrive, including adequate nutrition, education, and community resources, as well as safe, stable, nurturing environments in and outside the home (6, 8).
Policy and program options to mitigate the effects of the COVID-19 pandemic and promote child and family health and well being include:
For more policy ideas and research on this topic, see kidsdata.org’s Research & Links section or visit Child Trends and Robert Wood Johnson Foundation. Also see Policy Implications on kidsdata.org under Childhood Adversity and Resilience, Children's Emotional Health, Health Care, and topics related to Family Economics.
- Ensuring that federal and state safety net policies and investments—such as cash and food assistance, paid leave benefits, tax credits, unemployment insurance, and housing, health insurance, and child care assistance—reach all eligible families and are sufficient to meet their needs (3, 6, 7)
- Assuring that even during economic and public health crises, every child has access to family centered, culturally responsive, and coordinated health care within a medical home, particularly children with special health care needs who require uninterrupted care (7, 9)
- Promoting proactive policies and investments that help reduce family stress and increase stability for children, e.g., assuring that quality child care is affordable and accessible, supporting universal high-speed internet access to reduce barriers to health care and education, ensuring that support services such as home-visiting programs are available to families in need, and supporting family-friendly business practices (5, 7, 8)
- Supporting ongoing efforts to establish effective, consistent mental health and trauma screening, referral, and follow-up care systems in pediatric care and other settings (2, 5, 10)
- Ensuring that all children, youth, and families have access to culturally responsive, trauma informed, and resilience-building systems of mental health, substance abuse treatment, and other school- and community-based support services (5, 7, 10)
- Assuring that all schools (especially those with high concentrations of low-income students, children of color, or other vulnerable populations) provide positive and supportive environments, social-emotional education, and effective, culturally-responsive systems to address students’ physical, emotional, behavioral, and family needs (5, 6, 7, 10)
- Promoting long-term community-based efforts to provide children and youth with positive experiences, relationships, and opportunities, such as quality mentoring, after-school programs, summer programs, and safe places to play and exercise, particularly in vulnerable communities (5, 6, 7)
- Addressing the root causes of health inequities through strategies such as public health community partnerships that engage and support marginalized populations; also, adopting a comprehensive approach to health care that goes beyond treating illness to addressing community factors—such as safe housing and access to healthy food—that impact health (4, 5)
Sources for this narrative:
1. Center on Budget and Policy Priorities. (2022). Tracking the COVID-19 economy's effects on food, housing, and employment hardships. Retrieved from: https://www.cbpp.org/research/poverty-and-inequality/tracking-the-covid-19-economys-effects-on-food-housing-and
2. Gassman-Pines, A., et al. (2020). COVID-19 and parent-child psychological well-being. Pediatrics, 146(4), e2020007294. Retrieved from: https://publications.aap.org/pediatrics/article/146/4/e2020007294/79655/COVID-19-and-Parent-Child-Psychological-Well-being
3. Barr, A., et al. (2022). The pandemic showed why social and structural determinants of health matter. Now it's time for policymakers to act. Brookings Institution. Retrieved from: https://www.brookings.edu/blog/how-we-rise/2022/02/18/the-pandemic-showed-why-social-and-structural-determinants-of-health-matter-now-its-time-for-policymakers-to-act
4. Michener, L., et al. (2020). Engaging with communities – Lessons (re)learned from COVID-19. Preventing Chronic Disease, 17, 200250. Retrieved from: https://www.cdc.gov/pcd/issues/2020/20_0250.htm
5. Bhushan, D., et al. (2020). Roadmap for resilience: The California Surgeon General's report on adverse childhood experiences, toxic stress, and health. Office of the California Surgeon General. Retrieved from: https://osg.ca.gov/sg-report
6. Blackwell, C. K., et al. (2022). Youth well-being during the COVID-19 pandemic. Pediatrics, 149(4), e2021054754. Retrieved from: https://publications.aap.org/pediatrics/article/149/4/e2021054754/185416/Youth-Well-being-During-the-COVID-19-Pandemic
7. Children Now. (2022). 2022 California children's report card: A survey of kids’ well-being and a roadmap for the future. Retrieved from: https://www.childrennow.org/portfolio-posts/2022-california-childrens-report-card
8. Centers for Disease Control and Prevention. (n.d.). Essentials for childhood: Creating safe, stable, nurturing relationships and environments for all children. Retrieved from: https://www.cdc.gov/violenceprevention/childabuseandneglect/essentials.html
9. National Resource Center for Patient/Family-Centered Medical Home. (n.d.). Medical home overview. American Academy of Pediatrics. Retrieved from: https://medicalhomeinfo.aap.org/overview
10. Butler, S. M. (2022). Need for long-term strategies to address children’s mental health underscored by COVID-19 era. JAMA Health Forum, 3(2), e220229. Retrieved from: https://jamanetwork.com/journals/jama-health-forum/fullarticle/2788866
- Research & Links
- Websites with Related Information
- Coronavirus Pandemic (COVID-19). Robert Wood Johnson Foundation.
- Coronavirus Resource Center. Johns Hopkins University and Medicine.
- COVID-19. Child Trends
- COVID-19. Centers for Disease Control and Prevention.
- COVID-19 Resources for Children with Special Health Care Needs. Lucile Packard Foundation for Children's Health.
- COVID-19 Resources for Individuals and Families. U.S. Dept. of Agriculture.
- COVID-19: Overview and Evaluation – Pediatric Collection. American Academy of Pediatrics.
- COVID-19: Responding to the Health and Economic Crisis. Center on Budget and Policy Priorities.
- Family Snapshots: Life During the Pandemic. American Academy of Pediatrics.
- Rapid Assessment of Pandemic Impact on Development – Early Childhood (RAPID-EC). University of Oregon Center for Translational Neuroscience.
- Supporting Children and Families During the COVID-19 Pandemic. Early Childhood Technical Assistance Center.
- World Pandemic Research Network. Paris Institute for Advanced Study.
- Key Reports and Research
- Children’s Health and Well Being During the Coronavirus Pandemic. (2020). Kaiser Family Foundation. Garfield, R., & Chidambaram, P.
- COVID-19 and Parent-Child Psychological Well-Being. (2020). Pediatrics. Gassman-Pines, A., et al.
- COVID-19 Parent Survey: How the Pandemic Has Impacted California Parents’ Child Care Plans and Preferences. (2020). California Child Care Resource and Referral Network.
- Engaging with Communities – Lessons (Re)Learned from COVID-19. (2020). Preventing Chronic Disease. Michener, L., et al.
- Families of Children with Disabilities Will Need Support Beyond the Pandemic. (2020). Urban Institute. Greenberg, E., & Fisher, P.
- Kids and COVID by the Numbers. (2022). First Focus.
- Mental Health, Suicidality, and Connectedness Among High School Students During the COVID-19 Pandemic — Adolescent Behaviors and Experiences Survey, United States, January–June 2021. (2022). Morbidity and Mortality Weekly Report. Jones, S. E., et al.
- Mitigating the Impacts of the COVID-19 Pandemic Response on At-Risk Children. (2020). Pediatrics. Wong, C. A., et al.
- More Than One in Four Latino and Black Households with Children Are Experiencing Three or More Hardships During COVID-19. (2021). Child Trends & National Research Center on Hispanic Children and Families. Padilla, C. M., & Thomson, D.
- Parenting and Stress During the Coronavirus Pandemic. University of Michigan School of Social Work, Parenting in Context Research Lab.
- Pediatric Emergency Department Visits Associated with Mental Health Conditions Before and During the COVID-19 Pandemic — United States, January 2019–January 2022. (2022). Morbidity and Mortality Weekly Report. Radhakrishnan, L., et al.
- School-Based Strategies for Addressing the Mental Health and Well-Being of Youth in the Wake of COVID-19. (2021). National Academies Press. National Academies of Sciences, Engineering, and Medicine.
- Stabilizing Supports for Children and Families During the Pandemic. (2020). Urban Institute. Adams, G.
- Stories of Hardship from Families with Young Children as the COVID-19 Pandemic Persists. (2021). Urban Institute. Waxman, E., & Gupta, P.
- Supporting Families and Child Care Providers During the Pandemic with a Focus on Equity. (2020). Child Trends. Daily, S., & Kazi, A.
- The Association Between School Closures and Child Mental Health During COVID-19. (2021). JAMA Network Open. Hawrilenko, M., et al.
- The Impact of the COVID-19 Pandemic on Adolescent Emotional, Social, and Academic Adjustment. (2021). Journal of Research on Adolescence. Branje, S., & Morris, A. S.
- Tracking the COVID-19 Economy’s Effects on Food, Housing, and Employment Hardships. (2022). Center on Budget and Policy Priorities.
- Transforming Practice with HOPE (Healthy Outcomes from Positive Experiences). (2021). Maternal and Child Health Journal. Burstein, D., et al.
- Trends in U.S. Emergency Department Visits Related to Suspected or Confirmed Child Abuse and Neglect Among Children and Adolescents Aged <18 Years Before and During the COVID-19 Pandemic — United States, January 2019–September 2020. (2020). Morbidity and Mortality Weekly Report. Swedo, E., et al.
- County/Regional Reports
- COVID-19 Racial, Ethnic and Socioeconomic Data and Strategies Report. Los Angeles County Dept. of Public Health.
- The COVID-19 Resilience Poll. (2020). Valley Vision & Capitol Public Radio. Schmidt, E., et al.
- Understanding Coronavirus in America: Los Angeles County. University of Southern California.
- More Data Sources For Family Experiences During the COVID-19 Pandemic
- COVID-19 and Children. UNICEF Data and Analytics.
- Household Pulse Survey: Measuring Social and Economic Impacts During the Coronavirus Pandemic. U.S. Census Bureau.
- Understanding Coronavirus in America. University of Southern California.
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