Doctor talks to mixed race mother and child.

Family-Centered Care Matters for Kids With Special Needs, but Many Families Report Challenges With Providers

Families with limited resources or inconsistent insurance are more likely to face hurdles, new study finds.

Children and youth with special health care needs (CYSHCN) who receive family-centered care generally have better health outcomes, research shows. When health care providers engage and prioritize the needs of the family, CYSHCN enjoy better overall health; better access to coordinated, ongoing, comprehensive health care within a medical home; fewer emergency department visits; and fewer unmet health needs.

Yet in the United States, CYSHCN families from disadvantaged groups face barriers to receiving high-quality family-centered care, according to a new analysis of national survey data by Paul Morgan, now at the University at Albany, SUNY, and colleagues at Penn State University and SRI International.1

The researchers assessed family-centered care by measuring the extent to which doctors or other health providers:

  • Spent enough time with the child.
  • Listened carefully.
  • Showed sensitivity to the family’s values and customs.
  • Provided the family with specific information they need concerning the child.
  • Helped the family feel like a partner in the child’s care.

Data were from the 2016–2019 National Survey of Children’s Health (NSCH), which uses a five-question screener to identify CYSHCN.

The study focused on the quality of care received by CYSHCN families in visits to health professionals in the previous year and controlled for potentially confounding factors including children’s general health status and the severity of their impairments.

Socioeconomic Background Is Tied to the Quality of Family-Centered Care

Morgan and colleagues found that some CYSHCN families report greater barriers to receiving high-quality family-centered health care, including:

  • Families without consistent health insurance coverage.
  • Poor and lower-income families.
  • Single-parent families.
  • Families who usually receive care in a clinic or health center, emergency room, or other setting outside a doctor’s office.
  • Families of children with autism spectrum disorders, anxiety, or depression.

By contrast, families of CYSHCN with asthma—the most commonly reported special health care need—were significantly more likely to receive family-centered care than families of CYSHCN without asthma.

The results did not show consistent racial/ethnic disparities across all the measures of family-centered care—a finding that surprised the researchers. However, families of Black and Hispanic CYSHCN reported that providers spent relatively less time with their children compared with families of white CYSHCN. Families of Hispanic CYSHCN also said that providers showed less sensitivity to their family’s culture and customs.

A Targeted Approach Could Help Improve Care

Evidence from the study suggests that socioeconomic factors, rather than race or ethnicity, are central drivers of disparities in family-centered care among CYSHCN in the United States. To address these disparities, policies and systems of care serving these young people and their families can adopt comprehensive, coordinated approaches to increase provider-family engagement, cultural responsiveness, and shared decision-making, the authors noted.

To help particularly vulnerable CYSHCN families, targeted actions should focus on care provided in emergency departments, community clinics/health centers, and other non-office settings, and on providers caring for children with autism spectrum disorders or internalizing disorders, the authors suggested.


This article was produced under a grant from the Eunice Kennedy Shriver National Institute of Child Health and Human Development (NICHD). The work of researchers from Penn State University was highlighted.

 

References

  1. Paul L. Morgan et al., “Disparities in Family-Centered Care Among U.S. Children and Youth With Special Health Care Needs,” The Journal of Pediatrics 253 (2023): 297-303.e6.
01-24-Aging-Fact-Sheet-j

Fact Sheet: Aging in the United States

The current growth of the population ages 65 and older, driven by the large baby boom generation—those born between 1946 and 1964—is unprecedented in U.S. history.

This aging of the U.S. population has brought both challenges and opportunities to the economy, infrastructure, and institutions.

Demographic Shifts

The number of Americans ages 65 and older is projected to increase from 58 million in 2022 to 82 million by 2050 (a 47% increase), and the 65-and-older age group’s share of the total population is projected to rise from 17% to 23%.1

The U.S population is older today than it has ever been. Between 1980 and 2022, the median age of the population increased from 30.0 to 38.9, but one-third (17) of states in the country had a median age above 40 in 2022, with Maine (44.8) and New Hampshire (43.3) at the top of the list.2

The older population is becoming more racially and ethnically diverse. Between 2022 and 2050 the share of the older population that identifies as non-Hispanic white is projected to drop from 75% to 60%.3

The rising diversity among older Americans can’t match the rapidly changing racial/ethnic composition of those under age 18, creating a diversity gap between generations. In 2022, fewer than half of children ages 0 to 17 (49%) were non-Hispanic white.4 But research shows that there is fluidity in how people identify with racial/ethnic categories: Mixed-race Americans (particularly mixed Hispanic and white) increasingly see themselves as part of the white majority.5

Positive Developments

Education levels are increasing. Among people ages 65 and older in 1965, only 5% had completed four years of college or more. By 2023, this share had risen to 33%.6

Older adults are working longer. By 2022, 24% of men and about 15% of women ages 65 and older were in the labor force. These levels are projected to rise further by 2032, to 25% for men and 17% for women.7

The poverty rate for Americans ages 65 and older has dropped sharply during the past 50 years, from nearly 30% in 1966 to 10% today.8 The Census Bureau’s Supplemental Poverty Measure, which accounts for non-cash benefits, tax credits, and medical expenses, shows that 14% of older Americans lived in poverty in 2022.9

More older adults can meet their daily care needs. Older adults are functioning better on their own, and a shrinking share are living in nursing homes and assisted living settings than a decade ago. Home modifications and assistive devices such as walkers have helped older Americans maintain their independence.10

Challenges

Gains in life expectancy recently stalled. U.S. life expectancy at birth declined by 2.4 years between 2019 and 2021.11 The drop in life expectancy was driven largely by the COVID-19 pandemic, but deaths from drug overdoses, heart disease, chronic liver disease and cirrhosis, and suicide also played a role.12 Life expectancy rebounded slightly in 2022, to 77.5 years, but not enough to offset the decline during the pandemic.

Obesity prevalence among older Americans has increased at an alarming rate. In a single generation—between 1988-1994 and 2015-2018—the share of U.S. adults ages 65 and older with obesity nearly doubled, increasing from 22% to 40%.13

Wide economic disparities are found across different population subgroups. Among adults ages 65 and older, 17% and 18% of those identifying as Latino and African American, respectively, lived in poverty in 2022—more than twice the rate of those who identified as non-Hispanic white (8%).14

More older adults are divorced compared with previous generations. The share of divorced women ages 65 and older increased from 3% in 1980 to 15% in 2023, and for men from 4% to 12% during the same period.15

More older women are living alone. Over one-fourth (27%) of women ages 65 to 74 lived alone in 2023. This share jumped to 39% among women ages 75 to 84, and to 50% among women ages 85 and older.16

Older Americans face a caregiving gap, especially those with lower incomes and dementia.17 Demand for elder care is expected to increase sharply with a rise in the number of Americans living with Alzheimer’s disease, which could more than double by 2050 to 13 million, from 6 million today.18

Social Security and Medicare expenditures will increase from a combined 9.1% of gross domestic product in 2023 to 11.5% by 2035 because of the large share of older adults.19

Federal budget cuts and tax increases may be inevitable as more members of the large baby boom cohort reach retirement age and become eligible for entitlement programs. Policymakers can invest resources today to reduce poverty and improve the economic outlook for workers. These investments can increase young workers’ future productive capacity and help offset the costs of an aging population.

 


 

References

[1] U.S. Census Bureau, 2023 National Population Projections Tables: Main Series.

[2] U.S. Census Bureau, “America Is Getting Older,” June 22, 2023; and U.S. Census Bureau, 1980 Census of Population, Volume 1, Characteristics of the Population (PC80-1).

[3] U.S. Census Bureau, Projected Population by Single Year of Age, Sex, Race, and Hispanic Origin for the United States: 2022 to 2100.

[4] U.S. Census Bureau, Projected Population by Single Year of Age, Sex, Race, and Hispanic Origin for the United States: 2022 to 2100.

[5] Richard Alba, “What Majority-Minority Society? A Critical Analysis of the Census Bureau’s Projections of America’s Demographic Future,” Socius 4, no. 1 (2018).

[6] PRB analysis of data from the U.S. Census Bureau, Current Population Survey.

[7] U.S. Bureau of Labor Statistics, Civilian labor force by age, sex, race, and ethnicity, 2002, 2012, 2022, and projected 2032.

[8] Emily A. Schrider and John Creamer, “Poverty in the United States: 2022,” Table A-1. People in Poverty by Selected Characteristics: 2021 and 2022, Report no. P60-280, U.S. Census Bureau, Sept. 12, 2023.

[9] Schrider and Creamer, “Poverty in the United States: 2022,” Table B-2. Number and Percentage of People in Poverty Using the Supplemental Poverty Measure by Age, Race, and Hispanic Origin: 2009 to 2022, Report no. P60-280, U.S. Census Bureau, Sept. 12, 2023.

[10] Vicki A. Freedman, Jennifer C. Cornman, and Judith D. Kasper, National Health and Aging Trends Study: Trends Dashboards (2021).

[11] U.S. Centers for Disease Control and Prevention, “National Center for Health Statistics, Life Expectancy Increases, However Suicides Up in 2022,” Nov. 29, 2023.

[12] U.S. Centers for Disease Control and Prevention, “Life Expectancy in the U.S. Dropped for the Second Year in a Row in 2021,” Aug. 31, 2022.

[13] U.S. Centers for Disease Control and Prevention, National Center for Health Statistics, National Health and Nutrition Examination Survey.

[14] U.S. Census Bureau, Poverty Status of People by Age, Race, and Hispanic Origin: 1959 to 2022.

[15] PRB analysis of data from the U.S. Census Bureau, Current Population Survey.

[16] PRB analysis of data from the U.S. Census Bureau, Current Population Survey.

[17] Paola Scommegna and Morgan Sherburne, “Vulnerable Older Americans Aren’t Getting Adequate Care—Even With Paid Caregivers or Grown Children,” Population Reference Bureau, Oct. 19, 2022.

[18] Alzheimer’s Association. “2023 Alzheimer’s Disease Facts and Figures,” Alzheimer’s & Dementia 19, no. 4 (2023).

[19] Social Security Administration, Summary of the 2023 Annual Reports.