This piece, originally published in July 2021, was updated in May 2024 with new data from the Centers for Disease Control and Prevention and the findings of two recent studies on drowning prevention interventions.

Worldwide, at least 235,000 people fatally drown each year, making it one of the leading causes of injury-related death. The U.N. General Assembly has said drowning is “largely unrecognized relative to its impact.”

In the United States, drowning deaths are on the rise after decades of decline. More than 4,500 people drowned each year from 2020 to 2022, according to the most recent data from the Centers for Disease Control and Prevention. That’s about 500 more drowning deaths each year compared with 2019, the agency reported.

While local news stories about drownings — fatal or non-fatal — often focus on single events, journalists have the power and responsibility to inform their audience with statistics, trends and research on prevention. As noted in a 2019 report in the Health Promotion Journal of Australia, “Transmission of messages about drowning risk factors and prevention strategies, during summer, may lead to behavior change at a time when drowning risk is highest.”

Drowning is medically defined as the process of experiencing respiratory impairment from submersion or immersion in liquid. Drowning can be fatal, non-fatal with no injuries or non-fatal with injuries. In the U.S. there are about twice as many non-fatal drownings each year, which can lead to long-term health problems and costly hospital stays, according to the CDC. 

This explainer includes information on fatal drowning trends over the past two decades; the findings of three recent reports on racial disparities in fatal drowning rates; the factors contributing to disparities in drowning death rates among Black, Alaska Native and American Indian youth; the role of socioeconomic status; the role of climate change and the COVID-19 pandemic; and, finally, research on prevention.

An overview

Downing deaths differ by age and race and ethnicity.

For children aged 1 to 4, drowning rates increased by 28% in 2022 compared with 2019. For adults aged 65 to 74, drowning rates increased by 19% in that period, according to the CDC.

Among racial and ethnic groups, American Indian or Alaska Native people have historically had the highest rates of drowning deaths, followed by Black people. In 2021, drowning deaths among Black people increased by 28% compared with 2019, while the rates remained unchanged for AIAN people, the 2024 CDC data shows.

The greatest percentage of drowning deaths in babies under 1 year occur in bathtubs; in swimming pools in children between 1 and 13; and in natural bodies of water such as lakes, rivers, streams, and oceans in youth between ages 14 and 17, according “Unintentional Drowning Deaths Among Children Aged 0–17 Years: United States, 1999–2019,” released in July by CDC’s National Center for Health Statistics.

Some groups, including males, children and people with underlying medical conditions have a higher risk of fatal drowning. Also, factors like inability to swim, lack of close supervision, place of swimming and use of alcohol during water activities make drowning more likely.

In the U.S. roughly 40 million adults don’t know how to swim, including 37% of Black adults, compared to 15% of all adults. More than 60% of Black adults and 72% of Hispanic adults reported never taking a swimming lesson, the latest CDC data shows. Among all adults, nearly 55% have never taken a swimming lesson.

In the 2018 study “Predictors of Swimming Ability among Children and Adolescents in the United States,” published in Sports, researchers found that parents have a strong influence on kids’ ability to swim. Other factors that were positively associated with swimming ability included knowledge of water safety, having access to pools that were open all year and having a best friend who enjoys swimming.

There are still many unanswered questions about drowning, partly due to gaps in data and lack of research.

Many studies that look at fatal drowning data use death certificates, which don’t have information on the circumstances of drowning, details of known risks or other potential social or cultural influences, leaving a gap in better understanding of drowning data.

In addition, there are fewer studies on drowning compared with other unintentional injuries.

In “NIH Portfolio of Unintentional Injury Research Among Racial and Ethnic Minority Children: Current Landscape and Future Opportunities,” published in the Journal of Racial and Ethnic Health Disparities in July 2020, researchers found that between 2011 and 2018, 130 NIH-funded grants examined unintentional injuries — fatal and non-fatal — such as burns, drownings, falls, poisoning and car accidents. Of those, 34 were focused on children. And of the 34, eight focused on racial and ethnic minority children. Of the eight, half studied car injuries and none focused on drowning.

“In my mind, drowning prevention is the poor cousin in injury prevention,” says Dr. Linda Quan, a professor in the Department of Pediatrics at the University of Washington School of Medicine whose area of research includes drowning prevention and pediatric resuscitation. For motor vehicle injuries, which have received far more attention, there’s the National Highway Traffic Safety Board, or NHTSA, at the federal level. “But we don’t have really any kind of unity or single organization to push drowning prevention,” she says.

In “Interventions associated with drowning prevention in children and adolescents: systematic literature review,” published in Injury Prevention in 2015, researchers looked at academic literature about drowning prevention in children and teens, published between 1980 and 2010, and found that “few studies employ rigorous methods and high levels of evidence to assess the impact of interventions designed to reduce drowning.” The studies, the authors wrote, lacked consistency in measuring outcomes and the use of drowning terminology.

For instance, the study authors use the terms “fatal” and “non-fatal” drowning instead of “immersion,” “submersion,” “drowning” and “near drowning.”

“Terms such as ‘near-drowning,’ ‘dry or wet drowning,’ ‘active and passive drowning,’ ‘secondary,’ and ‘delayed onset of respiratory distress’ should not be used,” according to BMJ Best Practice.

Another term used by researchers is “water competency.” Water Safety USA, a roundtable of several national nonprofit and governmental organizations with a focus on drowning prevention and water safety programs, defines water competency as the ability to anticipate, avoid and survive common drowning situations in addition to being able to recognize and provide assistance to those in need. It also includes water safety awareness, basic swimming skills and helping others.

To be sure, drowning death rates declined by 32% in the U.S. and 57% worldwide between 1990 and 2017, thanks to educational campaigns and increased awareness. The rate of unintentional drowning deaths among children aged 0 to 17 years declined 38% in the U.S., according to the CDC report. But disparities in certain racial and ethnic groups have persisted.

Three 2021 reports to help you report on disparities in drowning deaths

Three reports released in June and July show that some racial disparities in drowning deaths exist and have persisted for more than 20 years, even though overall drowning death rates have declined.

Each report focuses on a slightly different age group, but they all show similar trends by age, sex, place of drowning, race and ethnicity.

Specifically, the reports show that disparities in drowning death rates are largest among Black, American Indian and Native Alaskan youth compared to whites, while there are little or no disparities among Hispanics, Asians, Pacific Islanders and whites.

The first study, “Persistent Racial/Ethnic Disparities in Fatal Unintentional Drowning Rates Among Persons Aged ≤29 Years — United States, 1999–2019,” published in the June 18 issue of CDC’s Morbidity and Mortality Weekly Report, shows that the drowning death rate among American Indian and Alaska Native people under 30 was twice as high as the drowning death rates for white people, while the rate for Black people was 1.5 times that of whites.

“Disproportionately high drowning death rates among certain racial and ethnic groups represent an important health equity issue,” says Dr. Tessa Clemens, a health scientist in the division of injury prevention at the CDC and one of the authors of the CDC study. “So, I think progress towards eliminating drowning in the United States, which is our goal — for there to be zero drowning — will only occur if we address these inequities and reduce drowning death rates in all groups.”

Fear of drowning has been identified as one factor contributing to limited swimming ability in some Black youths, write the authors. They point to the 2019 study “Vanishing Racial Disparities in Drowning in Florida,” published in Injury Prevention, which shows a reduction in drowning disparities between Black and white children potentially due to community-level initiatives to teach Black children how to swim.

The authors also point out an important limitation in the death certificate data, which they used for their study: the race and ethnicity on death certificates are reported by next of kin or by observation and people who identify as American Indian/Alaska Native, Asian or Hispanic are sometimes reported as white or non-Hispanic on death certificates, “leading to possible underestimations of deaths among these groups,” the authors write. “Proxy reporting of race/ethnicity is especially inaccurate for AI/AN persons.”

A 2016 CDC Vital and Health Statistics report “The Validity of Race and Hispanic-origin Reporting on Death Certificates in the United States: An Update,” found that while reporting for whites and Blacks has been “excellent” and had improved between 1979 to 2011 for Hispanics and Asian or Pacific Islanders, it has been poor for American Indian or Alaska Natives, where as many as 40% were misclassified on death certificates. The decedent’s country of birth and the racial and ethnic composition of where they lived at death have important effects on the quality of death certificate race and ethnicity reporting, the authors write.

“So an important message that we have in this study is that further research is really needed on the determinants that contribute to these disparities so that we can understand what’s driving them and what are the barriers to implementing effective drowning prevention programs in the communities that are at highest risk of drowning,” says Clemens.

The second report of note is the American Academy of Pediatrics’ technical report “Prevention of Drowning,” released in mid-July and forthcoming in the August issue of Pediatrics. It shows that from 2014 to 2018, in babies and children under 19, fatal drowning rates were highest among Black and American Indian and Alaska Native individuals. And while most white children died in residential pools, Black youths were most likely to die in a public pool, often at a motel or hotel.

Many times those pools are not supervised or don’t have a lifeguard on duty, says Quan, who is one of the study’s co-authors.

The American Academy of Pediatrics’ report also notes that there is “no data to support a recommendation for infant swim lessons. Aquatic programs for young children (especially those younger than 1 year) pose some medical concerns, and initiation of a swim program should be discussed between an infant’s caregiver and pediatrician.”

And the third report, “Unintentional Drowning Deaths Among Children Aged 0–17 Years: United States, 1999–2019,” released in July by CDC’s National Center for Health Statistics, shows that in the study’s two-decade period, fatal drowning rates were higher for Black children than for white or Hispanic children. Rates were also higher for children living in rural counties compared with urban counties. After declining from 1999 through 2003, the unintentional drowning death rate for Black children remained stable from 2003 through 2019, the report shows. Meanwhile, drowning rates for white and Hispanic children showed a steady decline during those years.

Drowning disparities among Black youth

Some of the contributing factors to higher drowning rates, particularly among Black children, are poor swimming skills in both children and their parents, lack of swim training during childhood, and lack of lifeguards at motel and hotel pools, according to the American Academy of Pediatrics’ new report.

“With no physiologic differences to explain the difference in drowning risk, race and ethnicity are likely a proxy for social and cultural differences between the groups,” the report adds.

A look back at U.S. history also helps explain why Black children and their parents are less likely to swim. Black families had limited access to public swimming pools not only during segregation but also afterward.

“When public swimming pools were racially desegregated, the reaction to that was for individuals and communities to invest money in private swimming pools,” says Jeff Wiltse, a history professor at the University of Montana and author of the 2010 book “Contested Waters: A Social History of Swimming Pools in America.” “The shift from public provision to private provision was in large part, not entirely, but was in large part driven by racial desegregation.”

Many public swimming pools closed and for Black families who didn’t have the means to join private clubs or pay for expensive swimming lessons, lack of access to public swimming pool continued after desegregation in the 1960s.

“This past discrimination casts a long shadow,” writes Wiltse in his 2014 paper “The Black-White Swimming Disparity in America: A Deadly Legacy of Swimming Pool Discrimination,” published in the Journal of Sports and Social Issues. “As a result of limited access to swimming facilities and swim lessons and the unappealing design of most pools earmarked for Blacks, swimming did not become integral to the recreation and sports culture within African American communities.”

Wiltse says that lack of access to swimming pools is “largely responsible for this contemporary disparity,” and says that generally, lack of swimming ability contributed to drowning deaths.

“In my mind, the lower swimming rates among Black Americans partly contributed to the higher drowning rates,” he says.

Drowning disparities among American Indian and Native Alaskan youth

There’s a dearth of research on what’s driving drowning disparities between American Indian and Alaska Native youth compared with whites.

“Swimming skill and other factors contributing to increased drowning risk in AI/AN persons have not been thoroughly explored,” write the authors of the June CDC study.

But Dean Seneca, CEO and founder of the consulting firm Seneca Scientific Solutions+ and an adjunct professor at the University at Buffalo who is teaching a class on Indigenous health disparities, points to a few contributing factors.

Many reservation communities don’t have swimming pools, he says.

“Our exposure to swimming at a very early age is very limited if you compare that to other populations,” says Seneca, a Seneca Indian.

In Alaska, even though many of the villages are by the water, people rarely go for a swim because the water is cold, even in the summertime. The majority of the villages don’t have swimming pools, Seneca says.

Also, Alaska Natives are more likely to have water-related jobs, without proper safety equipment, thus increasing their risk of drowning. Many go fishing and practice subsistence to feed their family.   

“Did they go on ice with their snowmobile? Was it working properly? Were they putting themselves in a risky situation?” says Seneca, adding that many drownings happen under the influence of alcohol or other substances.

And in many tribes, a focus on swimming is not a top priority.

“We don’t have the prevention messaging in many communities to educate on the seriousness of swimming and drowning,” he says. Also, “look at the Navajo Nation and many of our tribes in the Southwest. They’re struggling just to have water. They don’t even have running water to drink. A pool is probably a last priority.”

Seneca advises journalists to dig deeper into data by looking at Indian Health Services’ reports and contacting tribal epidemiology centers for more information.

Interventions work but they take funding, which Seneca says is severely lacking.

In the widely-cited 2003 study “Reducing Injuries Among Native Americans: Five Cost-Outcome Analysis,” published in Accident Analysis & Prevention, researchers reported that drowning rates dropped by 53% after local residents who used Alaska’s Yukon and Kuskokwim rivers as the primary mode of transportation were offered light-weight coats that doubled as floatation devices.

“To sell the floating properties of the coats to the public, tribal elders suggested a culturally appropriate marketing message: ‘Wear a float coat so that if you drown, people will not have to drag the river for your body,'” the authors write. “This message resonated strongly with communities accustomed to hours and days of uncertainty surrounding most drownings.”

Role of income

Studies haven’t shown that income level is an independent predictor of swimming ability, but some studies have shown an association.

In “Childhood unintentional injury: The impact of family income, education level, occupation status, and other measures of socioeconomic status. A systematic review,” published in Feb. 2021 in Pediatrics and Child Health, researchers looked at 54 studies between 1997 and 2017 on children 19 years and younger. They found that while most studies report higher injury rates among lower-income populations, results vary based on the type of injury and factors such as parental income or education and household size. For instance, 18 of the studies found a significant relationship between income and unintentional childhood injuries. Six studies that focused on traumatic dental injuries found no significant association, while three others did. One study reported that high family income was associated with an increased risk of traumatic dental injury in children.

Of the 54 studies, only one study, from Bangladesh, looked at drownings and found that a mother’s education was a risk factor of increased childhood drowning deaths, the authors report.  

In its new report, the American Academy of Pediatrics writes that “inadequate funding for pools, swimming programs, and lifeguards, as well as the cost associated with swimming lessons, may affect water competency and community resources for low-income populations.”

Wiltse calls this a class-based disparity.

“We’re going to find, especially in children of poor and working-class Americans of all races, drowning at a much higher rate than the children of middle- and upper-class Americans,” he says. “I think that’s the piece that the media reporting hasn’t begun to recognize. And unless we reverse, and again reinvest in public swimming pools and swim lessons at public pools, I think we’re going to see worsening of growing drowning disparities along class lines.”

Role of climate change and the COVID-19 pandemic

Some studies are starting to show that warmer winters could result in more fatal drownings.

In the study “Increased winter drownings in ice-covered regions with warmer winters,” published in PLOS One in Nov. 2020, researchers found that winter drownings increased as winter air temperatures got warmer and closer to 32 F, partly because ice covers on bodies of water became more unpredictable.

“The complex nature of changing winters including warming temperatures, rain on snow, and freeze-thaw events could decrease the stability of ice, suggesting that the risk of winter drowning may increase until lakes become completely ice-free,” the authors write.

Researchers used detailed data from Minnesota and found that the most vulnerable age groups for winter drowning were children and young adults. Most children drowned while playing or skating on thin ice. “The risk of drowning was exacerbated by curiosity, inadequate supervision, and a lack of risk-awareness and water-safety education,” the authors write.

As for the COVID-19 pandemic and its impact on drowning death rates in 2020 and so far this year, some local news reports have documented increases. The Boston Globe reported 18 drownings in Massachusetts in May, more than the previous three Mays combined. MLive reported 56 drownings in Lake Michigan in 2020, breaking the previous record of 49 in 2012. And according to the StarTribune, more people have drowned in Minnesota so far this year than in the same period for each of the past nine years.  

Meanwhile, home pool sales increased by 21% last year compared with 2019, according to ConsumerAffairs.

But there’s a lag in government data analysis and it might be too soon to tell whether a year of isolation and canceled activities like swimming lessons have led to a significant increase in fatal drownings nationwide.

“We have not been able to look at the data yet,” says Clemens of CDC. “We’re waiting for the final 2020 data to be able to look at whether there’s actually a significant difference in drowning numbers over previous years.”

Solutions

Many studies on drowning call for promoting basic swimming and water safety skills, installing barriers around pools, proper use of life jackets, active supervision of kids in the water and knowing how to perform CPR.

In his aforementioned study, Wiltse writes, “affordable, accessible, and, most importantly, appealing swimming pools are needed to popularize swimming among Black Americans and expand access for poor and working-class Americans more generally.”

A 2023 review of 22 English-language studies on drowning prevention interventions, including research published between 2011 and 2021, finds small but important changes in a range of outcomes. These include changes in awareness, water safety knowledge, attitudes, water safety behaviors and skills, policy changes and drowning rates. The interventions included swimming lessons, mandatory personal floatation devices, awareness campaigns and barriers to prevent access to water. One experimental study, published in 2019 in the journal Injury Epidemiology, finds that posting a sign at a park, informing visitors that water entry was illegal and could result in a fine exceeding $200, reduced the odds of someone entering the water by 63%.

A 2024 review of 47 English-language studies on life jackets finds that overall, life jacket usage is low — but that life jackets are highly effective at preventing drowning when people wear them. The authors underscore the significance of targeted interventions, regulation and educational programs that promote the use of life jackets to reduce drowning incidents. They also highlight the role of health care professionals in educating patients about the benefits and proper use of life jackets.

In the Dec. 2020 study “Adolescent Water Safety Behaviors, Skills, Training and Their Association with Risk-Taking Behaviors and Risk and Protective Factors,” published in Children, Quan and colleagues recommend diversity in swimming education. “Water safety education programs must include input from culturally diverse and immigrant populations throughout program development and implementation and provide information for parents in languages other than English,” Quan and colleagues write. “Furthermore, it’s essential that water safety programs recruit and retain lifeguards, swimming instructors, program administrators, and educators that reflect the communities that they aim to reach.”

Some researchers also suggest including water safety training in school curriculums.

Shawn Slevin, executive director of Swim Strong Foundation, a nonprofit organization in New York City, is working on legislation to mandate water safety training in New York State schools.

The Pew Charitable Trusts’ Stateline reported on July 15 that drowning prevention could be getting a boost in the federal budget. The story also provides a roundup of drowning prevention legislation in several states.

“The ability to enter a safe body of water during a warm summer is one of the real pleasures of life,” says Wiltse. “It’s an escape from the heat. It’s refreshing. It’s rejuvenating. It’s physically pleasurable. It’s mentally healthy and physically healthy. And I think it’s a matter of social justice. All people should have access to safe swimming venues. And just because you’re poor, working class, you shouldn’t be deprived of that pleasure.”

Story ideas and sources of drowning data

Check your community for local organizations that are offering free or no-cost swimming lessons to children and adults.

Check your county or state health department website for local and state data. Also check Indian Health Services’ reports and contact tribal epidemiology centers for more local information.

CDC’s WISQARS [Web-Based Injury Statistics Query and Reporting System] provides an interactive database about fatal and nonfatal injuries, violent deaths and cost of injury data.

CDC WONDER [Wide-ranging ONline Data for Epidemiologic Research] is another source of data. Use this Quick Start guide to learn how to use the system.

CDC’s Drowning Prevention website provides state-by-state drowning death rates.

Water Safety USA is a roundtable of several national nonprofit and governmental organizations with a focus on drowning prevention and water safety programs. The group is planning to publish the first-ever U.S. National Water Safety Action Plan, Pew’s Stateline reports.

The American Red Cross is another good source of drowning prevention information and facts.

If you’re looking to put together an info box for drowning prevention measures, the American Academy of Pediatrics and the CDC have helpful bullet points.

If you’re looking to learn more about disparities in recreational activities, here are three books to get you started: “Race, Riots, and Roller Coasters: The Struggle Over Segregated Recreation in America” by Victoria Wolcott. “The land was ours: how black beaches became white wealth in the coastal south” by Andrew Kahrl. “Contested Waters: A Social History of Swimming Pools in America” by Jeff Wiltse.

Remember that The Journalist’s Resource publishes its content under a Creative Commons license, meaning you’re free to republish this piece in your own news publication, provided you include author credit and a link back to the original piece. You’re also welcome and encouraged to embed the map and the Swimming Safety Tips graphic into your own stories.

The post Racial disparities in drowning deaths persist, research shows appeared first on The Journalist's Resource.

Major public health and medical associations in the U.S., including the American College of Physicians, American Medical Association and the American Public Health Association have recognized voting as a social determinant of health and have called for equitable access to voting, including for people with disabilities.

A growing body of research shows that voting and health are intertwined. People affected by poor health or disabilities are less likely to cast a ballot than the general population, and as a result, have less sway over who gets to be in power and what policies are made.

When previously disenfranchised people, including people with disabilities, vote, policies that benefit everyone and better health outcomes follow, according to County Health Rankings & Roadmaps, a program of the University of Wisconsin Population Health Institute.

About 42.5 million Americans have disabilities, according to 2021 data from the U.S. Census Bureau. A disability is any condition of the body or mind that makes it more difficult for a person to do certain activities or interact with the world around them, according to the Centers for Disease Control and Prevention.

In the November 2020 election, individuals with disabilities voted at a 7% lower rate than people without disabilities, according to the Disability and Voting Accessibility in the 2020 Elections survey by the U.S. Election Assistance Commission and Rutgers University. More than 11% — nearly 2 million people with disabilities — said they faced difficulties voting.

Voters with disabilities face a range of barriers, including inaccessible voting places, lack of accessible voting machines, and state laws that restrict voting by mail or criminalize assisting a person in voting, according to the American Civil Liberties Union.

When the Government Accountability Office officials visited 167 polling places during the 2016 general election, only 17% were fully accessible for people with disabilities who wanted to vote in person. The most common barriers were steep ramps, lack of signs for accessible paths to the building, gravel parking lots or lack of parking options.

In 2023, at least 14 states enacted 17 restrictive voting laws, which will take effect for the 2024 general election, according to the Brennan Center for Justice, a nonpartisan law and policy institute at New York University. Most of the laws limit mail-in voting, shorten the window of requesting a mail ballot or ban drop boxes. Even though these laws don’t target people with disabilities, they create additional barriers for them.

People who live in institutions like nursing homes, those who are under legal guardianship and people with mental illness are also less likely to vote than the general population, research has shown. In some cases, these people are prohibited from voting by state law.

Several states bar individuals under guardianship or conservatorship from voting, according to a 2022 study published in the Election Law Journal.

“Out of 50 states and the District of Columbia, 35 have constitutional provisions that specifically do not allow mentally incapacitated individuals to vote and thirteen state constitutions are silent on whether an individual with limited capacity can vote. Most states require a court order to disenfranchise individuals with limited capacity either as part of the appointment of a limited guardianship or as part of the voter registration process,” according to a 2022 explainer by the American Bar Association.

Although federal elections are mainly conducted under state laws and policies, several federal laws specifically address accessibility issues for voters with disabilities in states and counties, according to a 2021 report by the U.S. Government Accountability Office. Those provisions are included in the Americans with Disabilities Act of 1990 and the Help America Vote Act of 2002. The U.S. Election Assistance Commission, which sets guidelines for counties and states, has a dedicated page for voting accessibility. And those guidelines can be enforced by the Department of Justice.

Below, we have gathered four studies that examine the relationship between voting in the U.S. and disabilities. The research roundup is followed by several story ideas and interview questions for journalists.

The findings show…

• People with disabilities are less likely to vote than people without disabilities and state laws that restrict voting further limit their ability to vote.
• Voting rates vary depending on the type and level of disability. For instance, people with hearing disability tend to vote at a similar rate as the general population while the voting rate among people with mental disabilities has been shown to be 18% lower than the general population. Also, people with more functional limitations, including difficulty speaking and reading, were less likely to vote than people who didn’t have those challenges.
• Compliance with disability access laws at polling sites is under-enforced. There is no national ADA certification or permitting process to ensure that voting locations are accessible.
• Some states have competency laws that prevent certain groups of people with disabilities from voting, such as people who have legal guardians, even though such arrangements might have nothing to do with the person’s ability to vote. In many states, only a judge may decide whether an individual shouldn’t have the ability to vote.
• People living in nursing homes and assisted living facilities are enthusiastic to vote but face numerous hurdles to cast a ballot.

Research roundup

Disenfranchisement and Voting Opportunity Among People With Intellectual and Developmental Disabilities
Sarah Nelson Lineberry and Matthew Bogenschutz. Journal of the Society for Social Work & Research, Winter 2023.

The study: The paper examines predictors of voting among people with intellectual and developmental disabilities who received state-funded disability services in Virginia. The authors used data from the state’s 2017-2018 and 2018-2019 National Core Indicators In-Person Survey — a collaborative project of the National Association of State Directors of Developmental Disability Services and the Human Service Research Institute. The sample included 1,620 people.

The findings: People with more severe intellectual and developmental disabilities, those with guardians, and those who have not attended advocacy events are less likely to vote than their peers, the study finds. Having a key to one’s home and being able to lock one’s bedroom door were associated with an increased likelihood of voting. Social workers have the opportunity to help increase voting opportunities for people with intellectual and developmental disabilities, the authors write.

In the authors’ words: “Results suggest that people with severe or profound levels of [intellectual and developmental disabilities] have a particularly limited voice in American democracy, which should serve as a call to action for advocates to do more to ensure that voting opportunity the most fundamental of democratic rights — is accessible to all people.”

Also: Voting Rights for Persons with Serious Mental Illnesses in the U.S., published in 2019 in the Psychiatric Rehabilitation Journal provides a detailed overview of the issues.

Defending Voting Rights in Long-Term Care Institutions
Nina A. Kohn and Casey Smith. Boston University Law Review, 2023.

The study: Nearly 2.2 million Americans live in long-term care facilities in the U.S., including nursing homes and assisted living facilities. There’s a growing consensus among scholars and policymakers that “a person has the cognitive capacity to vote so long as they can somehow express a voting choice,” the authors write. And contrary to common assumptions, most long-term care residents don’t have substantial cognitive disabilities. Researchers reviewed nursing home inspection reports from 2016 to 2021 to better understand barriers to voting.

The findings: The authors’ review of nursing home inspection reports finds evidence that residents are enthusiastic about voting. But they identified more than 100 documented instances of nursing homes violating residents’ voting rights. Long-term care residents face systemic disenfranchisement, including “burdensome election procedures, profound isolation, and widespread failure by facilities to provide required assistance prevent long-term care residents from voting,” they write.

In the authors’ words: “Indeed, even a few, targeted cases defending the voting rights of long-term care residents could undermine the harmful assumption that this population does not have the ability to vote and that their voting rights are — as some states suggested amid the COVID-19 pandemic — ‘non-essential.’”

Designing Accessible Elections: Recommendations from Disability Voting Rights Advocates
Ihaab Syed, et al. Election Law Journal, March 2022.

The study: The article analyzes some of the main reasons why barriers to voting for people with disabilities persist and offers insights into how local and state election officials can improve election policies, practices and procedures.

The findings: One of the main reasons for voting inaccessibility is a complex and decentralized system of administering elections. Laws are under-enforced and there’s a failure to ask for the perspective, preferences and needs of people with disabilities. Most states don’t have a deadline for counties to designate polling places, let alone require an audit of the site for accessibility. The DOJ, which has the authority to issue regulations and litigate actions, has not been very active, researchers write. Also, policymakers must account for the fact that some people with disabilities will prefer or need to receive in-person assistance, and electoral policies must not interfere with their ability to get assistance from the person of their choice, they write.

In the authors’ words: “In closing, we urge election officials (and policymakers at all levels of government) to take seriously a slogan that has become a powerful rallying cry in the disability rights movement: ‘Nothing about us without us.’”

Disability and Voting Accessibility in the 2020 Elections: Final Report on Survey Results Submitted to the Election Assistance Commission
Lisa Schur and Douglas Kruse. February 2021.

The study: This paper is based on a nationally representative survey of 2,569 U.S. participants: 1,782 with disabilities and 787 without disabilities. The survey was conducted by SSRS, a well-established survey firm.

The findings: The 52-page report is filled with data, but here are some highlights.

• People with disabilities are more likely to be older and non-married, less likely to have high school or college degrees, and less likely to be Hispanic or Latino, compared with people without disabilities.
• The incidence of voting difficulties for people with disabilities dropped markedly, from 26.1% in 2012 to 11.4% in 2020. However, the overall rate of difficulties for voters with disabilities in 2020 was almost twice the rate for voters without disabilities (11% compared to 6%).
• 30% of people with cognitive impairment and 24% of people with vision impairment reported difficulty in voting at a polling place, compared with 9.8% of people without a disability.
• Mobility limitations were most common (48%) among people with disabilities, followed by cognitive (24%), hearing (18%), and vision (12%) impairments. (Some respondents fell into more than one category.)
• 49% of people with disabilities voted at a polling place or election office in 2020, compared with 56% of voters without disabilities.
• 55% of people with disabilities, including those with mobility limitations and those needing help with daily activities used mail ballots, compared with 44% of voters without disabilities.
• 74% of people with disabilities used early voting and voting by mail, compared with 69% of voters without disabilities.
• 53% of people with disabilities said they follow politics most of the time, compared with 42% of people without disabilities.

In the authors’ words: “The results show significant progress has been made in voting accessibility since 2012. This reflects well on the efforts of the EAC, election officials, policy-makers, and disability organizations. Nevertheless, voters with disabilities remain significantly more likely than those without disabilities to experience voting difficulties, indicating that more work needs to be done to improve accessibility.”

Also: The authors conducted another survey during the November 2022 elections, finding comparable results to 2020 but better accessibility than in 2012.

Disability and Election Administration in the United States: Barriers and Improvements
April A. Johnson and Sierra Powell. Policy Studies, November 2019.

The study: The authors examine whether lower voter turnout among people with disabilities is directly related to voting procedures, including voter registration, voter identification regulations and methods of ballot submission. They analyzed data from the 2012 and 2016 Cooperative Congressional Election Study, a survey of more than 50,000 Americans conducted by polling firm YouGov before and after presidential and midterm elections.

The findings: Overall, 30% of people with disabilities in 2016, and 37% of people with disabilities in 2012 specifically cited “disability or illness” as the main reason why they did not vote. Registering oneself to vote was a substantial barrier for people with disabilities. Also, voting by mail, instead of early voting or same-day registration, may be more inclusive for people with disabilities.

In the authors’ words: “One of the most disturbing discoveries presented here is that election administration also affects one’s psychological state. Electoral systems which impose or magnify perceptions of intimidation at the polls among any group of persons should garner both serious attention and pointed remedies,” the authors write. “We agree and believe that poll workers may benefit from more specialized training, specifically with regard to accommodations for those with cognitive, physical, or emotional limitations. Such administrative efforts may serve to reduce the ‘chilling effect’ of perceived hostile voting conditions.”

Suggested story ideas and interview questions

• Are your area’s polling places accessible to people with disabilities? To start, read GAO’s 2021 and 2017 reports to understand barriers, laws and solutions. The U.S. Department of Justice has an accessibility checklist for polling places. Also, the National Institute of Standards and Technology within the Department of Commerce examines technological barriers to the voting process for people with disabilities.
• Ask your local election officials how they are making voting places more accessible to people with disabilities. Do they have data on what percentage of polling places are fully accessible and how that rate has changed over time?
• Speak with advocacy groups and disability rights activists about barriers to voting in your state and county.
• What barriers do people in nursing homes, assisted living facilities and other institutions face in voting in your state or county? The National Disability Rights Network has a helpful explainer to get you started.
• What are your state’s voting laws for people under guardianship? Start with this 2022 explainer from the American Bar Association and this 2023 report by the National Disability Rights Network. This 2018 guide for voters with mental disabilities by the Bazelon Center for Mental Health Law also explains the basics.
• Are your area nursing homes assisting their residents who want to vote? You may be able to find past violations in nursing home inspection reports.
• Also, don’t forget to use proper style. The National Center on Disability and Journalism has a language style guide. The Arc, an advocacy organization for the rights of people with intellectual and developmental disabilities has a Journalist’s Guide to Disability for Election 2024.

The post Barriers to voting for people with disabilities: An explainer and research roundup appeared first on The Journalist's Resource.

In her inaugural address as Dartmouth College’s new president Sept. 22, Sian Leah Beilock vowed to make student mental health a central part of her leadership agenda.

“Fortunately, understanding how anxiety and stress play out in the brain and body has been the focus of my research for the past 20 years,” said Beilock, a leading scholar and former psychology professor at the University of Chicago who was president of Barnard College the last six years.

“The single greatest service we can do for our students, our faculty, and our staff is to support them on their wellness journeys,” she added.

Choosing a cognitive scientist to lead the Ivy League school reflects a broader trend across higher education in the U.S. College presidents nationwide say they are committed to making mental health an institutional priority amid what public health researchers call a national college student mental health crisis.

In fact, when the American Council on Education asked presidents in late 2021 about the issues they consider most pressing, they cited “mental health of students” most frequently.

College student mental health has worsened over time, as has the mental health of high school students, researchers find. During the 2022-23 academic year, an estimated 41% of college students had symptoms of depression and 36% had symptoms of anxiety disorder, according to a national survey conducted by the Healthy Minds Network, a group of scholars who study mental health among U.S. adolescents and young adults.

Of the 76,406 college students who participated, 14% said they had seriously considered suicide during the previous 12 months. The same proportion had symptoms of an eating disorder.

When the organization surveyed college students back in 2018-19, 21% reported symptoms of depression and 22% had symptoms of anxiety disorder. Meanwhile, 10% of students said they had seriously considered suicide and 7% had symptoms of an eating disorder.

Mental health problems more common among minority, LGBTQ students

Published studies indicate some groups of students fare worse than others. For example, racial and ethnic minorities are more likely to experience mental health problems than white students. Likewise, LGBTQ students tend to have poorer mental health than those who aren’t sexual or gender minorities.

Another group that college administrators worry about: first-generation college students — those who are the first in their families to go to college and often must navigate their higher education careers with little to no guidance from parents and other family members.

When researchers compared first-generation students and students whose parents went to college from 2018 to 2021, they learned that symptoms of depression and anxiety disorder were common in both. However, first-generation college students were much less likely to get help from professionals.

“Just 32.8% of first-generation students with symptoms received therapy in the past year, relative to 42.8% among continuing-generation students, and this disparity widened during the COVID-19 pandemic,” the researchers write in the paper, published in June.

In December, U.S. Surgeon General Vivek Murthy issued a public health advisory calling attention to the rising number of youth attempting suicide. Last week, Murthy and seven former surgeons general traveled to Dartmouth for a historic meeting about the country’s mental health crisis.

Tips for journalists

Considering the urgency and importance of this issue, we asked two mental health experts for advice on how journalists can improve their coverage.

In the five tips we outline below, you’ll find suggestions and insights from Gino Aisenberg, an associate professor of social work and co-director of the Latino Center for Health at the University of Washington, and Tony Walker, senior vice president of academic programs for The Jed Foundation, a nonprofit that helps higher education institutions, high schools and school districts implement strategies to prevent suicide and protect emotional health.

1. Make it clear to your audiences that the COVID-19 pandemic didn’t cause this crisis. Student mental health had been declining for years before the virus reached the U.S.

Several research studies and reports chronicle this trend, including a paper published last year that finds the proportion of college students with symptoms of depression and anxiety disorder nearly doubled between 2013 and 2019. The U.S. Centers for Disease Control and Prevention announced the first laboratory-confirmed case of COVID-19 in America in January 2020.

However, the pandemic has exacerbated the problem, especially among the most marginalized students, researchers find.

“College students now face increasing housing and food insecurity, financial hardships, a lack of social connectedness and sense of belonging, uncertainty about the future, and access issues that impede their academic performance and well-being,” researchers write in the 2021 paper, “More Than Inconvenienced: The Unique Needs of U.S. College Students During the COVID-19 Pandemic.”

Psychiatrist Annelle Primm and other mental health professions have spoken out about the mental health impacts of the U.S. Supreme Court’s recent ban on affirmative action in higher education admissions. Higher education leaders expect it to reduce the number of underrepresented minorities attending the nation’s most competitive colleges and universities.

”We believe that the discontinuation of affirmative action will increase isolation and decrease a sense of belonging among students of color, both of which pose risks to mental health,” Primm, the senior medical director of the Steve Fund, a nonprofit organization that focuses on the mental health of young people of color, writes in Diverse Issues of Higher Education.

She cites a 2019 report from the University of Michigan, which stopped practicing affirmative action in 2006, as evidence. One-fourth of its Black, Latino and Native American students said they did not feel they belonged at the school — a 66% increase over 10 years, she notes.

2. Familiarize yourself with two ongoing studies of college student mental health: the Healthy Minds Study, which focuses on U.S. college students, and the World Mental Health International College Student Initiative, which collects data from college students across the globe.

Academic researchers affiliated with these two projects conduct regular surveys of college students to track the prevalence of mental health problems and better understand the factors that affect their mental health and discourage them from seeking help. These researchers also publish studies examining and interpreting the data they collect through annual, web-based surveys.

The Healthy Minds Study, launched in 2007, has been fielded at more than 530 U.S. colleges and universities. Tens of thousands of undergraduate and graduate students complete the survey each year.

Four university faculty members lead the project: Sarah Lipson, an associate professor in Boston University’s department of health law policy and management; Daniel Eisenberg, a professor of health policy of management at the University of California, Los Angeles; Justin Heinze, an associate professor of health behavior and health education at the University of Michigan; and Sasha Zhou, an assistant professor of public health at Wayne State University.

In 2019, the World Health Organization started the World Mental Health International College Student Initiative. The project, commonly referred to as WMH-ICS, aims to collect data from college students worldwide. But as of early October 2023, only the U.S. and 17 other countries, eight of which are in Europe, participate.

The two lead U.S. researchers on that project are Randy Auerbach, an associate professor of psychiatry at Columbia University, and Ronald Kessler, the McNeil Family Professor of Health Care Policy at Harvard Medical School.

3. Emphasize that improving student mental health will require much more than hiring additional campus counselors.

The Jed Foundation advises administrators to focus on the wellness of the entire student body, not just students experiencing distress and those with a diagnosed mental illness. It also encourages schools to invest in programs aimed at preventing mental health issues and detecting them earlier. 

That guidance falls in line with recommendations that a committee of the National Academies of Sciences, Engineering, and Medicine made in 2021, following an 18-month investigation into how campus culture affects college student mental health and well-being. Committee members stressed the need for a comprehensive approach — one in which everyone on campus, including faculty and staff across departments, pitch in to change campus culture.

Walker, The Jed Foundation’s senior vice president of academic programs, urges journalists to take a broader look at the problem as well.

“When we talk about mental health — and sometimes the media is inadvertently guilty of this — we tend to just focus on therapists and we tend to focus on access to mental health care,” Walker tells The Journalist’s Resource. “Mental health is not just counseling.”

Interventions that show promise, according to research studies, include peer counseling, mindfulness training and activities that connect students with similar backgrounds, such as students who are the first in their families to go to college.

4. Explain that all college students face a range of stressors, but certain groups, including racial minorities and LGBTQ students, grapple with additional ones.

College can be stressful, requiring students to juggle class assignments, work and personal relationships while preparing for careers and making sure there’s enough money for food, housing, tuition and other basic needs. A lot of students worry about shootings and other forms of violence on college campuses.

Some student groups face additional stressors, such as racism and discrimination — topics that news stories about college mental health often overlook or gloss over. Many racial and ethnic minorities experience racism throughout their lives, including at their institutions, notes Aisenberg, who co-founded the Latino Center for Health, a research center at the University of Washington focused on improving the health of Latino people across Washington and the U.S.

Sometimes, racism is blatant, he adds. Sometimes, it comes in the form of microaggressions, offensive or insensitive remarks or questions aimed at some aspect of a person’s identity, such as their race, physical appearance, immigration status or cultural traditions.

“For some individuals, one microaggression might not throw them off,” says Aisenberg, who is Mexican American. “Another microaggression I experience the same day and another one and another one — over time, it can weigh [a person] down.”

When Gallup Inc., a company known for its public opinion polls, interviewed 1,106 Black college students last fall, about 1 in 5 reported feeling “frequently” or “occasionally” discriminated against at school. Almost 1 in 3 Black students attending schools where there’s little racial or ethnic diversity among the student body indicated they feel discriminated against “frequently” or “occasionally.”

Nearly one-third of Black students enrolled at such institutions also said they feel physically unsafe, disrespected and psychologically unsafe, according to an analysis released early this year by Gallup and the Lumina Foundation, a private foundation working to increase the share of Americans who continue their education past high school.

Aisenberg says it’s important journalists understand the role racism and discrimination play in student mental health. He’d like to see colleges invest more heavily in culturally responsive counseling, hiring mental health professionals who recognize and draw on the cultural strengths of students from minoritized backgrounds to help them.

Such counselors will understand why some student groups tend to resist therapy more than others.

“Latinos might be going to an indigenous healer, a priest, a minister long before seeking mental health services,” Aisenberg says.

5. Consult style guides that mental health experts have created specifically to help journalists use correct language and avoid perpetuating stereotypes about people with mental illness.

Several U.S. and international organizations have created style guides and tip sheets to help journalists provide a more complete and more accurate picture of mental health. They often offer guidance on word choices and point out common errors.

The California Mental Health Services Authority, for instance, warns journalists to be careful not to insinuate mental illness drove someone to commit a crime.

“Most people with a mental illness don’t commit crimes; most people who commit crimes don’t have a mental illness,” according to the government agency’s style guide. “People with psychiatric issues are far more likely to be victims than perpetrators of violence.”

Some other recommendations: Consider whether someone’s mental illness is relevant to a news story before including that information. Also, don’t rely on hearsay about a person’s mental health diagnosis.

Check out these resources, too:

• The Disability Language Style Guide, created by the National Center on Disability and Journalism at Arizona State University.
• The Mental Health Media Guide, an interactive guide developed by a coalition of mental health and entertainment industry professionals.
• Safe and Effective Messaging, which features phrasing recommendations from The Jed Foundation.
• Improving College Student Mental Health: Research on Promising Campus Interventions, a roundup of research from The Journalist’s Resource on interventions that scholars have found successful.
• Trauma-Informed Journalism: What It Is, Why It’s Important and Tips for Practicing It, a tip sheet and explainer from The Journalist’s Resource that features advice from two experts.
• The Journalism Resource Guide on Behavioral Health, written by the Carter Center, a charity that focuses on issues such as public health, human rights and democracy. It also offers Rosalynn Carter Fellowships for Mental Health Journalism.
• Preventing Suicide: Information for Journalists and Others Writing About Suicide is a tip sheet from the World Health Organization that outlines what journalists should and should not do when reporting on suicide.
• Recommendations for Reporting on Suicide, developed by experts across multiple fields and based on the findings of more than 50 international studies of suicide contagion.
• Covering Suicide is a guide the Dart Center for Journalism & Trauma at Columbia Journalism School created for college media organizations and student journalists.

The post 5 tips to help you cover the college mental health crisis appeared first on The Journalist's Resource.

In both cities and suburbs, affluent neighborhoods are more likely to enjoy the cool shade of trees than lower-income neighborhoods, some of which bear the scars of historic redlining and housing segregation.

The absence of trees is not just an aesthetic discrepancy — it can impact human health and well-being, a growing body of research shows. Neighborhoods devoid of trees often grapple with the urban heat island effect, where concrete and asphalt absorb and magnify summer’s heat and elevate the risk of heat-related illnesses. Heat islands are often linked to factors such as income and race.

Some studies have linked long-term exposure to green surroundings to health benefits such as living longer. In contrast, unsheltered sidewalks can deter residents from walking, exercising or socializing outdoors.

More than half of the world’s population now lives in urban areas. In the U.S. and Canada, nearly 80% of people live in urban areas, according to estimates from academic research. Meanwhile, in the U.S., urban tree canopy cover is declining at an estimated rate of four million trees per year due to urbanization and tree diseases.

In addition, climate change is making summer days hotter and heat waves more frequent and longer. Researchers warn this can further exacerbate the divide, calling on policymakers to invest in planting more trees and creating more green spaces in barren neighborhoods. Some cities are beginning to address these inequities by investing in new green spaces or testing creative solutions, such as green roofs.

American Forests, a nonprofit organization in Washington, D.C., has created Tree Equity Scores for nearly 200,000 urban neighborhoods in the U.S. to measures how well the benefits of urban tree canopy are reaching those who need them most, including low incomes, communities of color and those disproportionately affected by extreme heat, pollution and other environmental hazards.

Journalists can assess tree equity in their coverage area and find out whether local officials are implementing plans to reduce inequities in green space. To bolster journalists’ knowledge and reporting, we’ve gathered and summarized several recent studies that assess tree and green space inequities in cities and neighborhoods and examine their association with health. The studies are organized by publication date.

Research roundup

The Tree Cover and Temperature Disparity in US Urbanized Areas: Quantifying the Association with Income Across 5,723 Communities
Robert I. McDonald, et al. PLoS ONE, April 2021.

The study: Researchers use digital images from the U.S. Department of Agriculture’s National Agriculture Imagery Program to survey tree cover inequity in 100 large urban areas in the U.S., including 5,723 municipalities and home to 167 million people. They compare tree cover with summer land-surface temperature, using NASA’s Landsat imagery. The study focuses on one benefit of tree canopies: reducing temperature. Tree canopies primarily cool the air by shading surfaces such as concrete and asphalt, preventing heat storage and reducing the urban heat island effect. Tree cover can reduce land surface temperature by 10 to 20 degrees Celsius (18 to 36 degrees Fahrenheit) on a summer day, the authors write.

The findings: In 92% of the areas studied, low-income blocks had less tree cover than high-income blocks. More specifically, low-income blocks on average had 15.2% less tree cover and were 1.5 degrees Celsius (2.7 F) hotter than high-income blocks. In the Northeast U.S, low-income blocks had 30% less tree cover and were 4 C hotter (7.2 F) than high-income areas, showing some of the greatest differences in the U.S. At 54%, Connecticut had the greatest difference between high- and low-income neighborhoods. Researchers also find a positive association between more tree cover and populations that are white and have higher income. But, in 22% of the urban areas there was not a statistically significant relationship between income and tree cover.

Quote from the study: “A targeted investment in tree planting of $15.8 billion would close the urban tree cover disparity for 34 million people in low-income blocks of moderate or greater population density, although it would likely take at least 5–10 years for planted trees to be large enough to deliver significant ecosystem service benefits. Some of the needed tree planting would occur through public sector investment in tree planting and maintenance on the public right of way and publicly owned land… But some of the needed tree planting would have to occur on private land, which would require incentives or regulations that motivate the private sector to conduct this tree planting.”

More, from the lead author: “Tree inequality is worse in the suburbs,” published in thenatureofcities.com in May 2021.

Residential Housing Segregation and Urban Tree Canopy in 37 US Cities
Dexter H. Locke, et al. Urban Sustainability, March 2021.

The study: Researchers assess how the practice of redlining, a racially discriminatory housing policy established by the federal government’s Home Owners’ Loan Corporation during the 1930s, may relate to tree canopy coverage in city neighborhoods in 2020. “Tree canopy” typically refers to areas that are shaded by trees. The authors include 37 metropolitan areas, comparing predominantly white neighborhoods during the redlining era with areas where mostly racial and ethnic minorities lived.

The findings: Redlining influenced the location and allocation of trees and parks. The 37 metropolitan areas where mostly racial and ethnic minorities lived during the 1930s have, on average, 23% tree canopy cover today. Areas where U.S.-born white people lived in the 1930s have almost twice as much tree canopy, 43%.

Quote from the study: “Our investigation into 37 cities reveals a strong association between HOLC grades inscribed on maps roughly nine decades ago and present-day tree canopy. The study design cannot identify causal pathways, but the inequity invites careful scrutiny of the social, economic, and ecological processes that have created the demonstrably uneven and inequitable distribution of urban tree canopy in the United States.”

Green Spaces and Mortality: A Systematic Review and Meta-Analysis of Cohort Studies
David Rojas-Rueda, et al. The Lancet Planetary Health, November 2019.

The study: Researchers looked for English-language longitudinal studies that assessed the association between green spaces, or lack a thereof, and the risk of death from any cause. The meta-analysis of nine studies, published between 2012 and 2019, included more than 8 million adults from Australia, Canada, China, Italy, Spain, Switzerland and the U.S.

The findings: Increasing green spaces in neighborhoods is significantly associated with reducing risk of death. While researchers haven’t yet identified a causal relationship between green spaces and health, they have offered several theories. For instance, green spaces can foster physical activity, walking and cycling. They also lessen air pollution, noise and the heat island effect.

Quote from the study: “Although the benefits of green spaces and mortality that we found are robust, negative effects of increasing green spaces in the urban environment (such as gentrification) can occur, and these externalities should be considered when urban public policies are designed.”

Who Has Access to Urban Vegetation? A Spatial Analysis of Distributional Green Equity in 10 US Cities
Lorien Nesbitt, et al. Landscape and Urban Planning, January 2019.

The study: The study is an analysis of the relationship between urban vegetation and socioeconomic and demographic factors in 10 urban areas in the U.S.: Chicago, Houston, Indianapolis, Seattle, St. Louis, Los Angeles, New York, Phoenix, Portland, Ore. and Jacksonville, Fla. Researchers used high-resolution aerial imagery and Census data for their analysis. They define equitable access to urban vegetation as fair access, regardless of income, race or age.

The findings: Access to green spaces in urban areas is generally associated with higher income, higher education and higher percentage of white residents. Latino urban residents had the lowest level of access to urban greenery, followed by African American and Indigenous residents. Meanwhile, socioeconomic factors appear to be less often associated with access to park area, suggesting that parks are more equitably distributed.

Quote from the study: “The impact of urban vegetation exposure on the health and well-being of marginalized communities may become even more critical as climate change worsens. When health inequalities intersect with low access to urban vegetation, this intersection can create areas of high climate vulnerability.”

More on urban vegetation: The authors parse the effects of different types of green spaces. An area with a mix of vegetation, including shrubs, hedges, garden and crop plants and grassy areas, reduce stormwater runoff and offer green views that can reduce stress. Trees, or woody vegetation, can reduce the urban heat island effect by providing shade. Trees can also improve air quality, while parks offer space for physical activity and socialization.

More, from the lead author: “How cities can avoid ‘green gentrification’ and make urban forests accessible,” published in The Conversation in June 2021.

Additional reading

• Inequalities in Urban Greenness and Epigenetic Aging: Different Associations by Race and Neighborhood Socioeconomic Status
  Kyeezu Kim, et al. Science Advances, June 2023.
• Breathing Fresh Air in the City: Implementing Avenue Trees as a Sustainable Solution to Reduce Particulate Pollution in Urban Agglomerations
  Mamun Mandal, et al. Plants (Basel), April 2023.
• Leafier Communities, Healthier Hearts: An Australian Cohort Study of 104,725 Adults Tracking Cardiovascular Events and Mortality Across 10 Years of Linked Health Data
  Xiaoqi Feng, Michael A. Navakatikyan, Renin Toms and Thomas Astell-Burt. Heart, Lung and Circulation, January 2023.
• Exposure to Urban Greenspace and Pathways to Respiratory Health: An Exploratory Systematic Review
  William Mueller, et al. Science of the Total Environment, July 2022.
• The Disparity in Tree Cover and Ecosystem Service Values Among Redlining Classes in the United States
  David J. Nowak, Alexis Ellis and Eric J. Greenfield. Landscape and Urban Planning, May 2022.
• Urban Trees and Human Health: A Scoping Review
  Kathleen L. Wolf, et al. International Journal of Environmental Research and Public Health, June 2020.
• The Value of US Urban Tree Cover for Reducing Heat-Related Health Impacts and Electricity Consumption
  Robert I. McDonald, Timm Kroeger, Ping Zhang and Perrine Hamel. Ecosystems, May 2019.
• Redlining and Neighborhood Walking in Older Adults: The 2017 National Household Travel Survey
  Lilah M. Besser, Diana Mitsova, Christine L. Williams and Lisa Wiese. American Journal of Preventive Medicine, December 2022.
• The Relationship Between Urban Forests and Race: A Meta-Analysis
  Shannon Lea Watkins and Ed Gerrish. Journal of Environmental Management, March 2018.
• The Relationship Between Urban Forests and Income: A Meta-Analysis
  Ed Gerrish and Shannon Lea Watkins. Landscape and Urban Planning, February 2018.
• Exploring Pathways Linking Greenspace to Health: Theoretical and Methodological Guidance
  Iana Markevych, et al. Environmental Research, October 2017.
• Exposure to Greenness and Mortality in a Nationwide Prospective Cohort Study of Women
  Peter James, Jaime E. Hart, Rachel F. Banay and Francine Laden. Environmental Health Perspective, September 2016.
• Trees Grow on Money: Urban Tree Canopy Cover and Environmental Justice
  Kirsten Schwarz, et al. PLoS ONE, April 2015.
• Urban Greening to Cool Towns and Cities: A Systematic Review of the Empirical Evidence
  Diana E. Bowler, et al. Landscape and Urban Planning, September 2010.

The post Tree equity and trees’ impact on surface temperatures, human health: A research roundup appeared first on The Journalist's Resource.

On average, humans spend about one-third of their lives sleeping, but the field of sleep medicine is young, dating back to only the 1970s, and research on sleep, particularly disparities in sleep, is still emerging.

Most sleep studies included only white men in the early years and other racial and ethnic groups and women and were not included in studies of sleep disorders until the 1990s, says Dr. Andrea Matsumura, a sleep medicine physician at The Oregon Clinic in Portland, Oregon, and a member of the Public Awareness and Advisory Committee at the American Academy of Sleep Medicine.

But the growing body of literature so far has revealed that sleep plays an important role in human health, and factors beyond an one’s control are linked to sleep problems, which can then affect overall health. Research also shows sleep deficiencies disproportionately impact those who experience other health disparities.

To take into account social, environmental and economic factors affecting sleep, researchers and experts use the term “sleep health” to create a holistic view of sleep.

“When I think about sleep health, I think about the right environment and the right amount of hours for sleep,” says Matsumura. “If the environment is too cold or too warm, or if you don’t have the right bedding, if you’re working three jobs to survive, or if don’t have money for a bed and you’re having to sleep in a chair, that’s going to affect your sleep health, because you’re not going to be able to get enough sleep.”

Sleep disparities

Lack of sleep is associated with chronic conditions such as type 2 diabetes, heart disease, obesity and depression. It can lead to car crashes and mistakes at work, leading to injury and disability. And it’s been associated with early death.

The association between lack of sleep and heart disease has been compelling enough that in 2022 the American Heart Association added sleep to its heart health checklist, along with nicotine exposure, physical activity, diet, weight, blood glucose, cholesterol and blood pressure.

About one-third of U.S. adults reported not getting enough sleep in 2020, according to data from the U.S. Behavioral Risk Factor Surveillance System, a nationally representative telephone survey that collects state-level data about health-related risk behaviors and is run by the Centers for Disease Control and Prevention. That makes for about 35% of adults who sleep less than 7 hours per day, a trend that has remained relatively unchanged since 2013. The CDC recommends 7 or more hours of sleep for adults 18 years and older.

The amount of sleep U.S. adults get varies based on age, sex, state and county of residence, and race and ethnicity.

More 25- to 44-year-olds reported not sleeping enough, compared with other adults, the CDC data shows. Sleep patterns change with age and most of the change happens between young and middle-aged adults and tends remain mostly unchanged in older adults, research shows.

When looking at men and women, slightly more men than women reported lack of sleep in 2020, the CDC data shows. These differences can be driven by menstrual cycles, pregnancy, menopause, and sleep disorders such as insomnia and sleep apnea. For instance, studies show that sleep apnea is more common in men than women, due to factors such as obesity, upper airway anatomy, hormones and aging.

Meanwhile, women tend to report more sleep problems, including inadequate sleep time and insomnia.

Matsumura, who has researched sleep inequities in women, says there’s a psychological component to higher rates of insomnia in women, as they’re more likely to be affected by domestic violence, workplace discrimination, misogyny in workplace and in the world.

“And that weighs heavy on women’s emotional well-being, which then infiltrates into sleep,” she says.

There’s also a delay in diagnosing sleep disorders in women, because oftentimes they’re “explained away,” by health providers, she says.

“‘Oh, you have kids. Oh, you’re taking care of parents. Oh, well, your husband’s away at work all the time.’ The classic, stereotypical reasons to explain away women’s symptoms, when in fact, they may actually have a sleep disorder,” Matsumura says. “And there haven’t been enough studies and data to really identify these disparities and really help close the gap.”

Sleep deficiencies also vary by race and ethnicity, the CDC data shows: 31% of white and Asian adults and 32% of Hispanic or Latinos reported that they were not getting enough sleep in 2020, lower than the national average of 35%. In comparison, 38% of American Indian or Alaska Natives, 43% of Black people, and 47% of Native Hawaiian and other Pacific Islanders reported sleeping less than 7 hours per night.

Drivers of sleep disparities

Although there’s been much emphasis on the importance of good sleep habits, sometimes called “sleep hygiene,” many other social and economic factors can override individual efforts.

Research in the past two decades has shown substantial inequities in sleep that parallel other racial, ethnic and socioeconomic disparities in health outcomes.

For instance, studies find that the stress of experiencing of discrimination can disrupt sleep.

A study published in Sleep Medicine in 2015 reviews 17 research papers and finds that discrimination — whether based on race, nationality, religion, gender, sexual orientation or other social factors — is associated with poorer sleep.  

The authors of a 2017 review paper published in Population Research and Policy Review, write, “The body’s ongoing anticipation of experiencing racism-related stressors disrupts sleep, a behavior highly responsive to stress reactivity.”

Another study, published in the Journal of Racial and Ethnic Health Disparities in February 2022, finds experiences of discrimination and psychological distress are associated with racial disparities in sleep. “Specifically, Black participants reported more experiences of discrimination, which was associated with greater psychological distress, which was related to poorer sleep health,” the authors write.

One study, published in the Journal of Racial and Ethnic Health Disparities in October 2021, focuses on the role of sleep and fatigue among first-generation Hispanic immigrants. It highlights the importance of understanding how racial discrimination can affect sleep, leading to health declines among Hispanic and Latinx immigrants.

Speaking during a virtual event on sleep hosted in February by the Harvard T.H. Chan School of Public Health, Dr. Carmela Alcántara, an associate professor at Columbia University who studies how discrimination and other stressors affect sleep and health, noted that it’s important to remember that the racial and ethnic disparities are not due to genetic differences, rather it’s the impact of social, economic and environmental factors that can affect sleep.

Buildings, roads, traffic patterns, noise, light pollution, neighborhood safety can disrupt sleep.

“We know for example that marginalized communities, racial/ethnic minorities, are more likely to live in neighborhoods with socioeconomic disadvantage and so that can include neighborhoods that might have higher policing and the influence of greater exposure to noise pollution, or greater exposure to light pollution,” said Alcántara during the Chan School webinar.

Shift work, which refers to a work schedule outside the conventional daytime hours can also affect sleep.

About 16% of the U.S. workers had non-daytime schedules in 2017-2018, including 6% who worked in the evening and 4% who worked at night, according to the Bureau of Labor Statistics.

Local, state and federal policies can also affect sleep.

“Social and health care policies affect financial stress, safety concerns, residential segregation practices, and individual autonomy, which may restrict or facilitate opportunities for achieving good sleep health,” write the authors of a 2020 paper published in Annual Review of Public Health.

Loneliness and social isolation are also associated with poorer sleep health.

Other factors include marital status and level of education. People who are married and have higher levels of education tend to report better sleep health.

“While some of these associations may not be causal, they point to the possibility of higher levels of stress due to everyday challenges encountered by more disadvantaged populations, owing to financial insecurity and less autonomy over their life choices,” write the authors of the Annual Review of Public Health paper.

Also important: Access, and lack of access, to health care.

“It’s access to the medicines for sleep, and access to [continuous] positive airway pressure (CPAP) machines, which cost a lot of money,” says Matsumura.

Below we’ve summarized three studies on the topic and listed a dozen more to help you with your reporting.

Research Roundup

Sleep Health: An Opportunity for Public Health to Address Health Equity
Lauren Hale, Wendy Troxel and Daniel J. Buysse. Annual Review of Public Health, January 2020.

The study: This review study highlights the state of the science on the role of sleep in public health and describes the findings that link poor sleep health in adults with heart disease, obesity, mental health and neurodegenerative diseases, such as Alzheimer’s disease and Parkinson’s disease. The authors define sleep health and factors associated with it. They also discuss the potential role of sleep in understanding health disparities. The authors also discuss recommendations and opportunities for interventions and the importance of promoting sleep health to achieve health equity.

The findings: The authors present two arguments. First, sleep health is a critically important — and underrecognized — factor in overall health and specific health conditions. Second, social and environmental factors affecting sleep health are often beyond the control of an individual. They consider improving sleep health a necessary step toward achieving health equity.

The authors recommend making studying sleep health disparities in vulnerable population a top research priority. Some of understudied populations include prison inmates, people living in homeless shelters, American Indian and Alaska native populations and patients in hospitals and nursing homes.

The authors write: “As with other public health epidemics, such as obesity, that have increasingly recognized the limitations of individual-level interventions alone, sleep health and public health researchers will benefit from adopting a multilevel approach for developing and disseminating evidence-based and scalable interventions. Sleep health promotion efforts should be considered at all levels of the socioecological model from the individual level up through the societal level. Employers, teachers, community members, health care providers, the media, and policy makers all have a role to play in changing and promoting a culture of sleep health.”

Sleep Disparity, Race/Ethnicity, and Socioeconomic Position
Michael A. Grandner, et al. Sleep Medicine, February 2015.

The study: This review of existing literature summarizes research on sleep patterns across racial and ethnic groups, discusses how race and ethnicity may be associated with sleep, discusses the role of socioeconomic standing with sleep patterns and offers future research directions.

The findings: Among the studies that researchers highlight is one that finds people who perceived racial discrimination when seeking health care were almost twice as likely to report more sleep difficulties, compared with those who didn’t have the experience of discrimination. They were also 60% more likely to report daytime tiredness and fatigue. “This sleep disturbance associated with racism not only explains part of the relationship between racism and depression but may also account for racial differences in sleep architecture,” the authors write.

The authors write: “Because race is a social category rather than an innate genetic trait, researchers must more carefully unpack the function race can serve in identifying the reasons for these sleep disparities. We recommend a research agenda that examines the role of race, racism, and socioeconomic disadvantage in sleep and the role of sleep in health disparities.”

How Did Trends in Sleep Duration in 2020 Compare to Previous Years and How Did They Vary by Sex, Race/Ethnicity, and Educational Attainment?
Connor Sheehan, Longfeng Li and Megan E. Petrov. Sleep Medicine, January 2023.

The study: The authors set out to explore how sleep duration changed during the latter months of 2020, considering that people’s sleep patterns were considerably changed during the first months of the COVID-19 pandemic. Using the CDC’s Behavioral Risk Factor Surveillance System data for American adults, they compared the 2020 data with 2013, 2014, 2016 and 2018. The total sample was 2,203,861. The BRFSS is a population-based phone survey of American adults 18 years and older in 50 states, Washington D.C., Guam and Puerto Rico.

The findings: Sleep duration significantly increased during the first months of the pandemic, particularly during the lockdown in March and April, potentially due to having more time because of working from home, or job loss. “For many Americans, the lockdown represented the first real respite from the quotidian stressors of work,” the authors write. However, it reverted to historical patterns by the fall of 2020, and the sleep disparities and trends based on sex, race, ethnicity and education stayed the same as before the pandemic.

The authors write: “More research is needed to understand the short and long-term consequences of the short-lived increases in sleep duration. Regardless of the potential consequences, these brief increases did little to abate social inequality in sleep. Overall, our findings illustrate how ingrained sleep disparities are even in the face of an exogenous shock to population-level sleep duration patterns.”

More studies to consider

Racial/ethnic Disparities in Subjective Sleep Duration, Sleep Quality, and Sleep Disturbances During Pregnancy: An ECHO Study
Maristella Lucchini, et al. Sleep, September 2022.

The Need for Social and Environmental Determinants of Health Research to Understand and Intervene on Racial/Ethnic Disparities in Obstructive Sleep Apnea
Dayna A Johnson, Chidinma Ohanele, Carmela Alcántara and Chandra L Jackson. Clinics in Chest Medicine, June 2022.

Acculturation Stress, Age at Immigration, and Employment Status as Predictors of Sleep Among Latinx Immigrants
Chanel Zhan, et al. Journal of Immigrant and Minority Health, March 2022.

Cultural Adaptations of Psychological Interventions for Prevalent Sleep Disorders and Sleep Disturbances: A Systematic Review of Randomized Controlled Trials in the United States
Carmela Alcántara, et al. Sleep Medicine Reviews, April 2021.

Rising Temperatures Erode Human Sleep Globally
Kelton Minor, et al. One Earth, May 2022.

Emergence of Racial/Ethnic and Socioeconomic Differences in Objectively Measured Sleep–Wake Patterns in Early Infancy: Results of the Rise & SHINE Study
Xinting Yu, et al. Sleep, March 2021.

A Workshop Report on the Causes and Consequences of Sleep Health Disparities
Chandra L. Jackson, et al. Sleep, August 2020.

Are Sleep Patterns Influenced by Race/Ethnicity — A Marker of Relative Advantage or Disadvantage? Evidence to Date
Dayna A. Johnson, et al. Nature and Science of Sleep, January 2019.

Discrimination, Sleep, and Stress Reactivity: Pathways to African American-White Cardiometabolic Risk Inequities
Bridget J. Goosby, Elizabeth Straley and Jacob E. Cheadle. Population Research and Policy Review, May 2017.

Why Sleep Matters — The Economic Costs of Insufficient Sleep
Marco Hafner, et al. Rand Corporation, November 2016.

Sleep and its Relationship to Racial and Ethnic Disparities in Cardiovascular Disease
John H. Kingsbury, Orfeu M. Buxton and Karen M. Emmons. Current Cardiovascular Risk Reports, October 2014.

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On April 25, 2014, the city of Flint, Michigan, changed its municipal water supply source from the Detroit-supplied water coming from Lake Huron to the Flint River as a cost-saving measure. The new water source, however, was not treated and tested adequately, so it corroded the old water pipes, resulting in lead and other contaminants to enter drinking water.

By September 2015, a Virginia Tech research team found “serious levels of lead in the city water.” On Oct. 16, 2015, the city switched back to the Detroit water supply.

But the crisis didn’t end there.

By 2020, the rates of mental health disorders such as depression and post-traumatic stress disorder remained higher than average, according to a recent study in JAMA Network Open.

One in 5 Flint residents met the criteria for depression, 1 in 4 for PTSD and 1 in 10 for both depression and PTSD, estimates that exceed regional, national and global averages, according to “Prevalence of Depression and Posttraumatic Stress Disorder in Flint, Michigan, 5 Years After the Onset of the Water Crisis.” The study is based on in-depth online and mail surveys of 1,970 adult Flint residents between 2019 and 2020.

“We can’t know what percent is directly attributable to the crisis versus preexisting issues that have been around in Flint for a number of years, including disinvestment and concentration of poverty, which can influence mental health problems,” says Aaron Reuben, the study’s lead author and a postdoctoral scholar at Duke University and the Medical University of South Carolina. “But we find that when you compare Flint to the wider country or to Michigan, depression and PTSD are significantly elevated and we were able to connect this elevation to experiences people had during the crisis.”

Although the statistical findings of the study may not be generalizable to other regions, they add to the existing body of literature documenting the mental health effects of human-caused disasters on communities.

“Environmental disasters have significant mental health consequences, particularly when they involve toxic chemicals, misinformation being distributed, possibly criminal negligence by public officials, and they last a long time,” Reuben says.

For public official and decision makers, the message is to make mental health response part of the crisis response, Reuben says. “And it should start at day one with the assessment of need.”

The study finds several factors associated with persistent mental health conditions following the Flint water crisis, including being female, an annual income below $25,000 and previous traumatic experiences. Those who felt the water crisis had affected their health or their family’s health were also significantly more likely to meet the criteria for depression or PTSD.

Low confidence in public officials and lack of trust in the accuracy of information given by them was also linked to whether people had mental health problems later, as they continued to worry about potential health complications from exposure to contaminated water or didn’t understand what they’ve been exposed to.

“Those things are psychologically stressful and can be limited by good communication campaigns” by public officials, Reuben says.

Also significant among the findings is access and use of mental health services.

Among the respondents, 34.8% said they were offered mental health services. Among those who were offered the service, 79.3% accepted it.

“We found that when you offer services, people do want them,” Reuben says.

Despite the study’s findings, Reuben emphasized that the Flint community is remarkably resilient.

“When you look at all of the crises, the stressors, the disinvestment that the community has gone through over not just the last few years, but decades, in a way, they’re doing remarkably well,” he says. “What we want to do is just highlight that there are a number of folks who are not doing as well as they could and that we want this to be bringing attention to the lingering needs in the community.”

More on the study and its findings

The survey was conducted between Aug. 13, 2019 and April 10, 2020. Most of the data were collected before COVID-19 was declared a pandemic in March 2020, the authors write. Respondents were compensated with $35.

Slightly more than half of respondents were women. In total, 53.5% were Black, 42.5% white, 0.1% Asian, 0.3% Native American and 1.6% checked “other.” About 2% said they were more than one race.

Of the responding households, 56.8% had an annual income below $25,000 and 6.3% had an income above $75,000.

The authors say the final sample was demographically representative of Flint’s adult population. The city’s population was 80,628 in July 2021, according to the U.S. Census Bureau.

Most of the respondents — 86.8% — lived in homes directly affected by the water crisis.

In total, 97.7% said they changed their behavior to avoid or reduce exposure to contaminated water by avoiding drinking, cooking or cleaning with it. Of the respondents, 76.9% reported spending money to lower their risk by taking measures such as buying bottled water for cooking and cleaning or replacing all pipes and fixtures in their homes.

At the time of survey, 80.1% said they were concerned that exposure to the contaminated water would have long-term effects on their health.

Based on survey results, the study estimates prevalence of depression in the city was 22.1% during 2019-2020, more than double that in Michigan (9.4%), the U.S. (7.8%) and globally (7.2%), according to the study.

Prevalence of PTSD was two-to-five times greater than rates among U.S. veterans after deployment (12.1%), the general U.S. population (4.7%) and estimated global averages (2.8%), the study estimates.

Aside from factors such as gender, income and lack of trust in public officials, previous traumatic experiences were also associated with higher risk of depression and PTSD after the water crisis.

Respondents who had past exposure to any potentially traumatic events were twice as likely to experience depression, 4.5 times as likely to meet the criteria for PTSD and 5 times as likely to report both depression and PTSD compared with the general populations.

Rates were even higher for individuals who reported past physical or sexual trauma. They were 3 times as likely to report depression, 6 times as likely to have PTSD and 7 times as likely to report both compared with the general populations.

“There’s plenty of reasons the mental health problems we’re seeing today will continue unless additional services [are provided in Flint],” says Reuben. “The crisis isn’t done necessarily.”

The study has several limitations. Researchers’ estimates of depression and PTSD are presumptive because the conditions were not diagnosed by a clinician. Also, the estimates could be low if those who responded to the survey were less impaired than those who did not participate, or, high if those with unmet mental health needs were more motivated to participate.

In addition, the study doesn’t establish causal relationships between the water crisis and mental health condition, the authors note. The study also didn’t measure actual lead exposure, but the perception of it.

More research on the mental health effects of environmental disasters

Researchers have long known that natural and human-caused disasters are stressful events, and that a certain portion of the affected population will develop mental health conditions. Most studies recommend including mental health outreach early in the crisis response.

Here are a few studies on the mental health effects of environmental disasters in the U.S.:

Jackson County, Mississippi: In November 1996, one of the largest human-caused disasters in U.S. history at the time was confirmed by officials in Jackson County, Mississippi: 1,800 homes and businesses had been contaminated with the pesticide methyl parathion during a 10-year period.

The chemical, approved by the Environmental Protection Agency for spraying over fields to control insects, was being used indoors, mainly by exterminators, to kill insects, especially cockroaches. The chemical affects the nervous system and high doses can cause death. By 1997, the EPA had spent $69 million to decontaminate homes and businesses. No deaths or serious injuries were linked to the pesticide, according to Stephen Braun’s 1997 narrative piece in the Los Angeles Times.

A 2000 study, published in the journal Health & Social Work, finds 55% of those affected by the contamination, regardless of contamination levels, had symptoms of depression. The study was based on phone or in-person surveys of 115 households, between October and December 1997.

“Mental health services and support groups should be made available immediately after the disaster and remain accessible for a couple of years after the cleanup begins,” the authors write. “Because victims are unlikely to actively pursue formal providers, public awareness campaigns should begin soon after the disaster and attempt to legitimize formal mental health services and make them more readily available and accessible for low-income people.”

Graniteville, South Carolina: In January 2005, a large chlorine spill in Graniteville, South Carolina, led to death of nine people and hospitalization of 72. At least 840 people received medical treatment at area hospitals and doctors’ offices.

A survey of 225 survivors about 10 months after the spill showed that 36.9% had symptoms of post-traumatic stress, according to a study published in Social Psychiatry and Psychiatric Epidemiology in November 2011. Also, 27% of respondents reported panic attacks.

“Our findings suggest that personnel providing mental health services should be especially considerate of those with serious physical injuries,” the authors write. “Perhaps even more important than exposure, the physical morbidity resulting from a disaster is a strong risk factor for psychological distress.”

Flint, Michigan: Researchers have also studied mental health outcomes of the Flint water crisis shortly after it happened.

A 2017 study, published in the Journal of Community Psychology, used online and mail surveys of 786 Flint residents, conducted between September 2015 and September 2016, to examine the relationship between perceptions of household tap water quality and post-traumatic stress disorder symptoms.

Researchers find those who experienced poorer tap water quality during the water crisis experienced greater PTSD symptoms.

“The findings of our study underscore the negative effects of the Flint water crisis on adults and demonstrate the need for psychological interventions addressing the psychosocial effects of the crisis,” the authors write.

Jackson, Mississippi: The water crisis in Jackson, Mississippi, resulting from the failure of the city’s water treatment plants in August 2022, is a more recent example of a water disaster.

A December 2022 study, published in the journal Sustainability, uses health data from the Centers for Disease Control and Prevention to statistically compare the city of Jackson with eight nearby cities. It finds worse health status and health outcomes in Jackson compared with nearby cities, pointing to issues with the city’s hygiene and environmental health system.

“The urban water crisis in Jackson may already result in immense public health inequities, and the black communities experience significantly higher public health diseases than the majority-white cities,” writes the study’s author, Qingmin Meng. “The significantly worse mental and physical health status and the nine types of health outcomes in Jackson and Canton, which are majority-black cities in the Jackson region, than other seven non-majority black cities have showed Jackson may have started a critical degradation in public health that is still significantly threatening the black communities in Jackson, and likewise, the city of Canton.”

Meng compares the Jackson water crisis to Flint’s.

“Currently, the Jackson water crisis is significant yet overlooked for many years that may end up causing public health consequences even worse than Flint,” he writes.

Take-home message

Reuben says just providing more mental health services isn’t enough. Rather, there needs to be a holistic look at factors driving depression and PTSD in the community beyond a water crisis.

“We can’t go back and undo the crisis, but we can create a situation in which people feel that their needs are being looked after, that the information being provided by public officials are accurate,” he says.

He encouraged journalists to hold officials accountable, especially after published research points out the existing problems.

“We’ve got this study. Now what? Who’s going to do something with it?” he asks. “Get the response of folks in positions to make those decisions. What do they think of these findings? Go into the community and find people willing to be the representative, the voice and face of some of these problems.”

Additional reading

• “Experiences of the Flint Water Crisis Among Reproductive-Age Michigan Women in Communities Outside of Flint: Differences by Race and Ethnicity,” Sidonie K. Kilpatrick, et al. Journal of Racial and Ethnic Health Disparities, March 2022.
• “Lead-Laced Water In Flint: A Step-By-Step Look At The Makings Of A Crisis,” Merrit Kennedy, published on NPR in April 2016, details the timeline of the Flint water crisis.
• “‘Roach Men’ Left Toxic Trail,” Stephen Braun, published in October 1997 in the Los Angeles Times, explains the methyl parathion crisis in Jackson County, Mississippi.
• “Water, but not everywhere: Research sheds light on race and water access in metro areas,” Clark Merrefield of The Journalist’s Resource, published in November 2020, details a study that finds householders of color in the 50 largest metropolitan areas were 34% more likely to lack what the U.S. Census Bureau calls “complete plumbing” compared with white, non-Hispanic householders.
• “Racial disparities in access to running water: 5 studies to know,” Clark Merrefield of The Journalist’s Resource, published in November 2020, highlights five academic on the link between race and access to indoor running water.
• “Investigating stories on water access, affordability and safety: 5 tips to get started,” Clark Merrefield of The Journalist’s Resource, published in December 2020, lists five reporting tips for journalists.

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On Sept. 28, the White House is hosted a conference on hunger, nutrition and health — the second conference of its kind in five decades — and introduced a 40-page national strategy as a roadmap toward the goal of ending hunger and increasing healthy eating by 2030.

Among the drivers of the national strategy are food insecurity, which affects millions of Americans, and the increasing rates of diet-related diseases like obesity and diabetes.

The national strategy is built on five pillars: improving access to affordable food; prioritizing the role of nutrition and food security in overall health; empowering consumers to make healthy food choices; making it easier for people to be more physically active; and enhancing food and nutrition research.

“Lack of access to healthy, safe, and affordable food, and to safe outdoor spaces, contributes to hunger, diet-related diseases, and health disparities,” according to the conference’s website. “The COVID-19 pandemic has exacerbated these challenges further.”

It’s been more than 50 years since the White House has held such a conference.

The first and only White House Conference on Food, Nutrition, and Health was held in 1969 during the Nixon administration and it led to the launch of programs like the Supplemental Nutrition Assistance Program — or SNAP — the Special Supplemental Nutrition Program for Women, Infants, and Children — known as WIC — and changes to food labels.

When the first conference was held, one of the main concerns was that families and children were not getting enough calories. In the 1930s, 1940s and 1950s conditions like rickets and night blindness were common as a result of vitamin deficiencies, explained Dr. Dariush Mozaffarian, a renowned expert on food systems and cardiologist, in a Sept. 22 video conversation about the White House conference, hosted by “Conversations on Health Care,” which regularly features discussions on health policy and innovation with industry experts.

“We have addressed those, but what we have now is kind of a mess of a situation where more Americans are sick than healthy from diet-related diseases like obesity, diabetes and hypertension,” said Mozaffarian, Jean Mayer Professor at the Tufts Friedman School of Nutrition Science and Policy. “And at the same time, we have people who are food insecure.”

Mozaffarian is one of the co-chairs of an initiative that has been informing the White House conference on hunger and has produced a report with 30 policy recommendations. They include strengthening the existing federal nutrition programs such as WIC, accelerating access to “Food Is Medicine” services to prevent and treat diet-related diseases and establishing a new structure and authority within the federal government to coordinate various hunger, nutrition and health efforts across agencies.

Meanwhile, the COVID-19 pandemic has not only disrupted access to food for some, including children who relied on school lunches, it also has highlighted the link between diet-related diseases such as obesity and worse outcomes from a COVID-19 infection. Although average income and employment numbers have improved since 2020, “some U.S. households continue to face difficulties obtaining adequate food, particularly in the face of increasing food prices,” according to a report from the U.S. Department of Agriculture.

Nearly 30% of the world population — or 2.3 billion people — were food insecure in 2021, according to the United Nation’s report on the state of food security and nutrition, published in July 2022. That’s 350 million more people compared to before the COVID-19 pandemic began.

In the U.S., 10.2% of households were food insecure in 2021, which was not significantly different from 10.5% in 2020, according to the latest USDA data. The latest U.S. Census Bureau Household Pulse Survey, conducted between July and August 2022, shows that 11.5% of households reported sometimes or often not having enough to eat during the prior 7 days.

Food insecurity

The USDA defines food security as “access by all people at all times to enough food for an active, healthy life.”

Food insecurity occurs when people have limited or uncertain access to healthy, affordable food because of a lack of money and other resources, according to the USDA. Food insecurity may be influenced by factors such as income, employment, race and ethnicity, and disability.

Food insecurity is considered one of the social determinants of health. It has been associated with higher rates of obesity, chronic diseases and developmental problems in children. Food insecurity can also affect mental health, studies show.

“Although having a chronic physical and/or mental health condition can be a precursor to food insecurity, research also shows that food insecurity itself causes considerable stress and anxiety, which can exacerbate pre-existing mental illnesses,” according to a June 2022 study from the United Kingdom, published in BJPsych Advances.

Food insecurity disproportionately impacts communities of color, people living in rural areas, people with disabilities, older adults, LGBTQ+ individuals, military families and veterans, said the U.S. Health and Human Services Assistant Secretary for Health Admiral Rachel L. Levine in a public video conference on Friday, Sept. 23, previewing the upcoming White House conference on hunger.

“No one should wonder where their next meal is coming from, or if they will have a safe opportunity to be physically active,” she said.

In 2006, the USDA introduced new terminology to describe American households’ access to food, ranging from “high” and “marginal” to “low” and “very low” food security. The low and very low food security levels are also described as “food insecurity.”

Food security levels are typically measured at the household level. The USDA monitors levels of food insecurity through an annual survey of U.S. households.

The agency’s 2021 survey, which included 30,343 households, finds 10.2%, or 13.5 million, U.S. households were food insecure and had difficulty at some points during the year providing enough food for everyone in the household due to lack of resources. The rate was 10.5% in 2020 and 2019. In total, 33.8 million people lived in food-insecure households in 2021. The reports also provide state-by-state data.

Rates of food insecurity were higher among certain groups, including single women with children, Black and Hispanic individuals, and households with income below the federal poverty line, which was $27,479 annually for a family of four in 2021.

Food security levels also vary by state, ranging from a low of 5.4% in New Hampshire to a high of 15.3% in Mississippi, according to the 2021 USDA report.

In the U.S., food assistance programs such as SNAP, WIC and the National School Lunch Program may help reduce food insecurity, according to the U.S. Department of Health and Human Services.

The U.S. rate of food insecurity is comparable to rates in other developed nations, although it is higher than some, including France, Germany, Austria and the United Kingdom, according to an analysis of 2019 data by Our World in Data, an organization that published research and data about world’s largest problems. Some of the highest rates of food insecurity are seen in parts of Africa, South America and the Middle East.

Food deserts

The term “food desert” was coined in the early 1990s by the Scottish Nutrition Task Force. Food deserts are defined as geographic areas where there’s a dearth of supermarkets, food retailers or other sources of healthy and affordable food. In many instances, these areas are low-income communities.

In its Food Access Research Atlas, the USDA maps food access indicators — mainly distance from supermarkets — in relation to poverty. Distance to food stores is measured in half-mile and 1-mile increments in urban areas and 10- and 20-mile increments in rural areas. For instance, a low income, low access area is where at least 500 people, or 33% of the population, lives more than one mile in an urban area or more than 10 miles in a rural area from the nearest supermarket, supercenter or large grocery store, according to the agency.

The agency also has a Food Environment Atlas, which examines how factors such as store or restaurant proximity, food prices, food and nutrition assistance programs, and community characteristics interact to influence food choices and diet quality. 

Lack of access to healthy food options is associated with poorer health outcomes, studies have shown.

“A consequence of poor supermarket access is that residents have increased exposure to energy-dense food (’empty calorie’ food) readily available at convenience stores and fast-food restaurants,” according to the 2010 study “Disparities and Access to Healthy Food in the United States: A Review of Food Deserts Literature.” “It is documented that a diet filled with processed foods, frequently containing high contents of fat, sugar and sodium, often leading to poorer health outcomes compared to a diet high in complex carbohydrates and fiber,” the authors write.

Maintaining a healthy diet may be difficult for low-income people for several reasons. They may not be able to afford healthier options or lack transportation to a supermarket outside of their neighborhood.

“I think there are some people that make it seem like poor people are ignorant” about what healthy food choices are, said Dan Glickman, the former Secretary of Agriculture, in the video conversation including Mozaffarian and hosted by “Conversations on Health Care.” “And that’s just not true at all. There are certainly economic disincentives for them to be able to purchase, in many cases, fresh produce in the same capacities for the higher-income people.”

There have been efforts to bring healthy food options to underserved areas.

In 2010, former First Lady Michelle Obama’s “Let’s Move!” campaign announced the goal of eradicating food deserts by 2017, according to “Food Deserts: Myth or Reality?” published in the Annual Review of Resource Economics in October 2021. In 2011, the Healthy Food Financing Initiative (HFFI) was established at the Department of the Treasury and HHS. The 2014 Farm Bill – or the Agricultural Act of 2014 — officially established HFFI at the USDA. The program provides grants to community organizations to build or renovate grocery and retail food stores in underserved communities.

To be sure, bringing a supermarket to a low-income neighborhood isn’t going to quickly solve health problems like obesity, according to “The Changing Landscape of Food Deserts,” a report by the United Nations System Standing Committee on Nutrition released in June 2020. “However that new supermarket will probably have an impact on community health and well-being, including economic benefits,” the authors write.

About 10% of 65,000 U.S. census tracts are identified as food deserts by the USDA, affecting 13.5 million households.

Below, we have gathered several studies that examine the relationship between food insecurity and health. The list is followed by reporting resources for journalists. We will update this piece as new research and information becomes available.

Research roundup

The Effect of Food Access on Type 2 Diabetes Control in Patients of a New Orleans, Louisiana, Clinic
Jasmine A. Delk; et al. Journal of the American Pharmacists Association, September 2022.

The authors reviewed the records of 109 patients at a diabetes management clinic in New Orleans, Louisiana, and find that reduced proximity to grocery stores offering fresh foods may negatively affect patients’ ability to control their type 2 diabetes. The patients’ mean age was 54 years and 92% were Black. Six percent of the patients identified as “other or multiple races or ethnicities,” 1% were Native American/Pacific Islander and 1% were Asian. There were no white patients in the study group.

The study finds 79% of patients whose diabetes was uncontrolled — their blood glucose levels were above glycemic control standards — lived in food deserts.

“The results of this small, retrospective study serve as a beneficial starting point in raising awareness for the socioeconomic phenomena of food deserts and how these environments influence chronic disease state management,” the authors write.

Social Determinants of Health in Total Hip Arthroplasty: Are They Associated With Costs, Lengths of Stay, and Patient Reported Outcomes?
Ronald E. Delanois; et al. The Journal of Arthroplasty, July 2022.

The authors examine data from 136 Medicare patients at the Rubin Institute for Advanced Orthopedics at the Sinai Hospital of Baltimore, part of the Lifebridge Health network, who had an outpatient total hip replacement surgery between 2018 and 2019 to look for associations between social determinants of health — such as living in a food desert and having access to housing and transportation — and patient outcomes, including the costs of care during the 30 days after the procedure. The cost of care was defined as all costs of care after discharge, including physician payments. The mean age of the patients was 73 years and 60% were female. About 35% of the patients were “nonwhite,” and 40% of all patients reported living alone.

The authors find that the costs of care in the 30 days after the procedure were, on average, $53,600 more for people who lived in food deserts compared with those who didn’t live in a food desert. Other factors associated with increased costs included poor access to transportation and appropriate housing, and minority status, the authors find.

“As more [patients with total hip replacements] transition to the outpatient setting, social factors should play an increasing role in patient selection,” the authors write.

Disparities in Access to Food and Chronic Obstructive Pulmonary Disease (COPD)-Related Outcomes: A Cross-Sectional Analysis
Eric Moughames; et al. BMC Pulmonary Medicine, April 2021.

The study links data collected from the SubPopulations and InteRmediate Outcome Measures in COPD Study between 2010 and 2015, and the 2019 food desert data using USDA’s Food Access Research Atlas. Of the 2,713 patients in the dataset, 22% lived in food deserts. Those living in food deserts were more likely to be “nonwhite” and more likely to have a lower income than those who didn’t live in food deserts, according to the study.

The authors find living in a food desert area was associated with worse chronic obstructive pulmonary disease, or COPD, outcomes. They also find limited food access is detrimental in both low- and high-income neighborhoods. The connections between low food access and COPD outcomes were stronger in urban areas compared with rural areas.

“The results further suggest that the impact of low food access may be greatest in urban areas,” they write. “Our results could be explained by the ubiquitous prevalence of unhealthy options (e.g., corner stores, fast food chains, etc.) in cities compared with rural areas, and in this type of urban setting, people will be more inclined to go to a fast food restaurant or corner store that is much closer and cheaper rather than walking farther away to a healthy food source.”

Related study: “Evaluating the Association Between Food Insecurity and Risk of Nephrolithiasis: An Analysis of the National Health and Nutrition Examination Survey,” by Benjamin W. Green; et al., published in the World Journal of Urology in September 2022, finds a relationship between food security and developing kidney stones, with greater severity of food insecurity associated with increased risk of developing kidney stones.

Food Deserts and Cardiovascular Health among Young Adults
Alexander Testa, Dylan B. Jackson, Daniel C. Semenza and Michael G. Vaughn. Public Health Nutrition, July 2020.

The authors analyze data from Wave I (1993–1994) and Wave IV (2008) surveys from the National Longitudinal Study of Adolescent to Adult Health, including 8,896 study participants between 24 and 36 years old. They find living in a food desert was associated with poorer cardiovascular health. They also find living in a food desert has the strongest association with greater cigarette use.

“One possibility is that engagement in worse health behaviors via living in a food desert may be a partial function of the composition of the type of retail outlets in the area,” the authors write. “For instance, food deserts tend to have a larger composition of unhealthy retailers that sell cigarettes and advertise the sale of tobacco products on store fronts (such as convenience stores or neighborhood bodegas), which may translate into poorer health behaviors.)”

Related study: “Association Between Living in Food Deserts and Cardiovascular Risk,” by Heval M. Kelli; et al., published in Circulation Cardiovascular Quality and Outcomes in September 2017, finds that among 1,421 people living in the Atlanta metropolitan area, those living in food deserts had higher prevalence of high blood pressure, smoking, obesity and 10-year risk for cardiovascular disease.

Food Insecurity and Loneliness Amongst Older Urban Subsidised Housing Residents: The Importance of Social Connectedness
Judith G. Gonyea, Arden E. O’Donnell, Alexandra Curley and Vy Trieu. Health and Social Care in the Community, September 2022.

The authors use survey data from in-person interviews in English or Spanish with 216 adults ranging in age from 55 to 90 years and living in a subsidized housing community in a neighborhood of a U.S. northeastern city. Half of the participants were Black and 45% were Latino.

Researchers find that 34% survey respondents reported being food insecure, which is higher than the 10% average for the older adults in the U.S. About 34% of the respondents also reported being lonely, which is higher than the 19% to 29% average for older adults nationally.

“The present study offers evidence of the interrelatedness of food insecurity, loneliness, poor health and food access challenges for the understudied population of lower-income older adults living in subsidized housing communities,” the authors write. “Importantly, the current study underscores the need to investigate the role of social and emotional factors that may heighten the risk of individuals experiencing food insecurity in later life.”

More studies of note

• “The 1969 White House Conference on Food, Nutrition and Health: 50 Years Later,” by Eileen Kennedy and Johanna Dwyer, published in Current Developments in Nutrition in June 2020, provides a historical overview of the first conference and the programs that were developed as a result. “Necessary ingredients such as policy-relevant science, leadership, advocacy, and the science and art of politics must be blended together to make nutrition policies that truly advance the public’s health and well-being,” the authors write.
• “Association of Socioeconomic and Geographic Factors With Diet Quality in US Adults,” by Marjorie L. McCullough; et al., published in JAMA Network Open in June 2022, examines data from 155,331 adults participating in a nationwide U.S. cohort study. The researchers find that Black individuals, low-income white individuals, those with low levels of education (high school or lower), and people living in rural areas or food deserts, were more likely to have overall poor diet quality. “All dietary components, but especially sugar-sweetened beverages and processed meats, contributed to the disparities observed,” the authors write. “Higher income and education had protective associations against poor diet quality, but these associations were not the same across all racial and ethnic groups.”
• “Measuring the Food Environment and Its Effects on Obesity in the United States: A Systematic Review of Methods and Results,” by Ryan J. Gamba, Joseph Schuchter, Candace Rutt and Edmund Y. W. Seto, published in Journal of Community Health in October 2014, examines 51 peer-reviewed studies that analyzed the relationship between obesity and the number, type and location of food outlets such as supermarkets, convenience stores and fast-food restaurants. It finds that 80% of the studies found at least one significant association between the food environment and obesity. “Although the methods and results of individual studies were inconsistent, as a whole this body of research suggests that food environments are associated with obesity,” the authors write.
• “Food Insecurity Among People With Cancer: Nutritional Needs as an Essential Component of Care,” a commentary by Margaret Raber; et al., published in the Journal of the National Cancer Institute in September 2022, notes that 17% to 55% of the cancer patients in the U.S. are food insecure. The commentary “explores the issue of food insecurity in the context of cancer care, explores current mitigation efforts, and offers a call to action to create a path for food insecurity mitigation in the context of cancer.”
• “Food insecurity Among African Americans in the United States: A Scoping Review,” by Elizabeth Dennard; et al., published in PLOS One in September 2022, aims to identify risk factors associated with food insecurity and how food insecurity is measured across studies that focus on African Americans. In their conclusion, the authors write, “underrepresented risk factors to consider for future research include factors linked to health disparities among African American adults: lifetime racial discrimination, neighborhood grocery store availability, neighborhood safety from violence, income insecurity, and the impact of COVID-19 on employment.”
• “The Economics of Food Insecurity in the United States,” by Craig Gundersen, Brent Kreider and John Pepper, published in Autumn 2011 in Applied Economic Perspectives and Policy, provides an in-depth review of food insecurity, including the nuanced relationship between income and food security and the impact of food assistance programs on food insecurity.
• “Food Insecurity and Severe Mental Illness: Understanding the Hidden Problem and How to Ask About Food Access During Routine Healthcare,” by Jo Smith; et al., published in BJPsych Advances in June 2022, provides an overview of the relationship between food insecurity and mental illness, and its impact on people with severe mental illnesses such as schizophrenia and bipolar disorder. “Psychiatrists need to routinely assess and monitor food insecurity in people with [severe mental illness],” the authors write.
• “Changes in Food Environment Patterns in the Metropolitan Area of the Valley of Mexico, 2010–2020,” by Ana Luisa Reyes-Puente; et al., published in the International Journal of Environmental Research and Public Health in July 2022, looks at “food swamps,” which are areas where residents have easy access to high-calorie food, so much that the supply overshadows healthy food options. “The proliferation of food swamps is a feature of food environments in the global south. Unlike food deserts in the global north, where solving physical access to healthier food suffices to regulate its effect on malnutrition, in food swamps in the global south, solutions must be geared towards solving physical access as well as the social preferences of the population for certain types of food,” the authors write.
• “A Descriptive Analysis of Food Pantries in Twelve American States: Hours of Operation, Faith-Based Affiliation, and Location,” published in BMC Public Health in March 2022, provides an overview of food banks and finds that in the 12 states studied, “approximately three quarters of food pantries are located in urban areas, and almost two thirds were considered to have a faith affiliation, which were also more common in urban versus rural areas.”
• “Mobile Pantries Can Serve the Most Food Insecure Populations” by Lily K. Villa; et al, published in Health Equity in January 2022, uses data from an Arizona food pantry called the Phoenix Rescue Mission and finds “people aged 60-80 years and immigrant people of color are more likely to use both mobile and brick-and-mortar pantries.” The mobile pantries in this study are an extension of the brick-and-mortar food pantry operation and are vans that can change locations to meet the residents’ needs. The authors write: “This research suggests that mobile pantries can reach the most food insecure populations and local nonprofits and governments can consider implementing mobile pantries to reach food insecure communities.”
• “An Equity-Oriented Systematic Review of Online Grocery Shopping Among Low-Income Populations: Implications for Policy and Research,” published in Nutrition Reviews in May 2022, examines 16 studies that assessed various aspects of online grocery shopping. It finds low availability of online grocery services in rural communities, high costs, and perceived lack of control over food selection were important barriers to using online grocery services. Meanwhile, factors such as the ability to pay for groceries online with SNAP benefits were motivators. (Related studies: “Online Pilot Grocery Intervention among Rural and Urban Residents Aimed to Improve Purchasing Habits,” and “Availability of Grocery Delivery to Food Deserts in States Participating in the Online Purchase Pilot.”)

More recommended sources

• “Conversations on Health Care” hosts Mark Masselli and Margaret Flinter speak with Dan Glickman, the former Secretary of Agriculture, and Dr. Dariush Mozaffarian, a renowned expert on food systems, about the White House Conference on Hunger, Nutrition, and Health, on Sept. 22, 2022. The program features in-depth discussions on health policy and innovation with industry newsmakers.
• “The White House Conference on Hunger, Nutrition and Health is an opportunity for transformational change,” by Dariush Mozaffarian; et al., published in Nature Food in August 2022, provides historical context and the authors’ hopes for the 2022 White House conference on hunger.
• “USDA Food Box Program: Key Information and Opportunities for Better Access to Performance,” published in September 2021 by the U.S. Government Accountability Office, evaluated the Food Box Program, which was implemented by the USDA in May 2020 in response to the COVID-19 pandemic. The program paid contractors to buy food from producers and deliver it to organizations like food banks, according to GAO.
• “Position of the Academy of Nutrition and Dietetics: Food Insecurity in the United States,” by David H. Holben and Michelle Berger Marshall, published in the Journal of the Academy of Nutrition and Dietetics in October 2022, states, “systematic and sustained action is needed to achieve food and nutrition security in the United States.” It adds: “To build and sustain solutions to achieve food security and promote health, [registered dietitian nutritionists (RDNs), and nutrition and dietetics technicians, registered (NDTRs)] should engage in outreach efforts to forge partnerships among clinicians, charitable food providers, community partners, food processors, food retailers, other stakeholders, and people living with food insecurity.”

Resources for journalists

• You can sign up here to watch the White House conference, which will be livestreamed on Sept. 28, 2022 at 9 a.m. EST.
• “Food Security in the U.S.” is the USDA’s main online source for data and information on the topic. It also has a helpful “Media Resources” page, which includes tips for interpreting food security statistics.
• You can use the USDA’s Food Access Research Atlas to find food access indicators for low-income areas using different measures of supermarket accessibility at the census tract level. A census tract is a small, relatively permanent subdivision of a county that usually contains between 1,000 and 8,000 people but generally averages around 4,000 people. You can also find state-by-state estimates of the size of low-income populations who have low access to nutritious food here.
• The USDA’s Food Environment Atlas provides maps and data on restaurant proximity, food prices, food and nutrition assistance programs and community characteristics. One of the Atlas’ goals is “to provide a spatial overview of a community’s ability to access healthy food and its success in doing so.”
• The USDA’s Food and Nutrition Service has data and reports on child nutrition and programs, including SNAP and WIC.
• You can find the USDA’s annual reports on household food security, dating back to 1995, here.
• Our World in Data has several charts that compare countries’ levels of hunger and undernourishment.
• The Center for Science in the Public Interest is an independent, science-based consumer advocacy organization and a food and health watchdog.
• Feeding America is a nationwide hunger-relief organization with a network of 200 food banks and 60,000 food pantries and meal programs.

The post Food insecurity and food deserts in the US: A research roundup and explainer appeared first on The Journalist's Resource.

This piece on maternal mortality was updated on September 19, 2022, to reflect new data from the CDC.

Each year, at least 700 women die in the United States because of pregnancy or delivery complications. Four in five of those deaths are preventable, according to the latest data from the Centers for Disease Control and Prevention.

These deaths are defined as maternal mortality or pregnancy-related deaths. The maternal mortality data are typically reported as rates, which is the number of maternal deaths per 100,000 live births.

Worldwide, the maternal mortality rate was estimated at 211 in 2017. The World Health Organization’s goal is to reduce that rate to 70 by 2030.

The U.S. maternal mortality rate is 23.8, according to the latest data from the Centers for Disease Control and Prevention. That’s considered “very low” globally, yet it is far higher than many other wealthy nations including Sweden, Italy, Austria and Japan.

To be sure, the U.S. maternal mortality rates dropped steadily throughout the 20th century, from over 800 deaths per 100,000 live births in 1900 to 6.6 per 100,000 in 1987. The decline was attributed to several factors, including better disease monitoring, access to health care, better nutrition and advances in medicine.

But since then, the rate has been steadily increasing. By 2018, the maternal mortality rate was at 17.3 per 100,000, then at 20.1 in 2019 and 23.8 in 2020, according to the CDC. Factors contributing to the increase include disparities in access to care, increasing maternal age and increase in chronic conditions such as diabetes and obesity, studies show.

In June, the White House released a Blueprint for Addressing the Maternal Health Crisis, with a vision that the U.S. “will be considered the best country in the world to have a baby” in the future. Among the first steps is improving and expanding Medicaid coverage, better data collection, diversifying the perinatal workforce and providing better economic and social support for people before, during and after pregnancy.

Disparities in maternal mortality

There are stark and persisting racial disparities in maternal mortality in the U.S. Black people are more than three times as likely as white women to die from pregnancy-related causes, according to the CDC. American Indian and Alaska Native people are more than twice as likely.

Between 2018 and 2020, the maternal mortality rate for Black people was 55.3, compared with 19.1 among white people and 18.2 among Hispanic people, according to the latest CDC data.

In comparison, the maternal mortality rate was 41.4 among Black people, compared with 13.7 for white people between 2016 and 2018. The rates were 26.5 for American Indian or Alaska Native people, 14.1 among Asian or Pacific Islanders and 11.2 for Hispanic people, according to the CDC.

While factors such as access to care and health insurance coverage play a role in pregnancy outcomes, research also points to disparities in social determinants of health such as income, age and housing. Many of these disparities are related to systemic and structural racism.

“It’s important to be clear that it’s racism, not race,” says Dr. Rachel Hardeman, Blue Cross Endowed Professor of Health and Racial Equity at the University of Minnesota School of Public Health, and the founding director of the Center for Antiracism Research for Health Equity at the University of Minnesota. “It’s about systems and structures that historically have been built to not ensure that Black people and Black working people thrive.”

And until structural racism and related factors such as implicit bias in health care are addressed, “we will continue to see the disparities,” says Dr. Veronica Gillispie-Bell, associate professor at Ochsner Clinical School and head of Women’s Services at Ochsner Medical Center in Kenner, Louisiana.

Advice for journalists

For journalists covering the issue, especially after the Supreme Court overturned Roe v. Wade in June and in light of the upcoming midterm elections, it’s important to explain what’s driving current disparities in maternal mortality and how abortion bans can potentially worsen those disparities.

“When we are forcing people to remain pregnant, that means statistically speaking, there are more people who will be pregnant in the United States because Roe has been overturned, which means there are more people in that risk pool for adverse outcomes,” says Hardeman.

The state bans also adversely affect people with fewer resources because they are less likely to have the ability to travel to states where abortion remains available.

“That means you have to have a job that offers paid leave. It means you have to have childcare. It means you have to have the resources to drive, to fly, to wherever you need to go and then stay there for a while,” says Hardeman. “So we are perpetuating a cycle of disadvantage for people who already are very disadvantaged in our communities.”

Abortion bans can also lead to disruption of care because health-care providers, including physicians and pharmacists, may fear criminal prosecution if they provide abortion-related services.

“Anytime you have disruptions in care, Black and brown people are the ones who suffer the most,” says Gillispie-Bell, who is also medical director for Louisiana’s Maternal Mortality Review Committee and Perinatal Quality Collaborative.

Explain to your audiences that maternal mortality can affect anyone: “I think that people still think that this is a problem among poor people or poor Black people or uneducated, poor Black people,” says Gillispie-Bell. “And then they feel like ‘Well, that makes sense that they would have worse outcomes.’”

But as stories have documented in recent years, Black women with resources, including professional tennis player Serena Williams, can also be at risk of developing serious complications, which can be deadly if they’re dismissed by medical professionals.

“[Willliams] was begging for somebody to listen because she was having a blood clot in her lungs,” adds Gillispie-Bell.

Explain to your audiences how racism is one of the main drivers of health disparities today. And have conversations with scholars who are from the communities that are most impacted by these issues, says Hardeman. Seek diverse sources.

And while highlighting disparities in maternal health, also point out solutions and improvements, says Gillispie-Bell.

“The reason I say that is because while we want everybody to be aware [of disparities], we need to highlight [improvements], because we are finding out patients are just extremely fearful of going into the health-care system,” she says. Highlight local efforts and improvements and let audiences know what they can do to help improve outcomes.

Differences in definition of maternal mortality

The World Health Organization defines maternal mortality as the death of a woman from pregnancy-related causes during pregnancy or within 42 days after the end of pregnancy.

The CDC’s Pregnancy Mortality Surveillance System extends that period to 1 year from the end of pregnancy, while the agency’s National Center for Health Statistics, uses WHO’s definition.

Take note of the research studies’ definition of maternal mortality, especially when comparing data. In a 2020 article in ProPublica, Nina Martin explains the definition of maternal mortality that ends at 42 days leaves out many new mothers who die within a year after giving birth and may lead to underestimation of maternal mortality rates in the U.S.

A note on pregnancy terminology

There are currently no standards for an inclusive terminology for people who are pregnant and give birth.

The AP Stylebook says “pregnant women” is fine, and so is “pregnant people.”

The Society for Maternal-Fetal Medicine, a nonprofit organization in the U.S. dedicated to improving maternal and child outcomes, advises health providers to use the gender pronouns preferred by the patient.

“When addressing or referring to a cohort of pregnant people for whom gender identity is known to be uniformly women, both ‘pregnant women’ and ‘pregnant people’ are accurate, though ‘pregnant women’ is more specific,” according to the society.

“When addressing or referring to pregnant people as a whole group, for whom gender identity is unknown and should not be assumed, the terms ‘pregnant people,’ ‘pregnant individuals,’ ‘birthing people,’ or ‘birthing individuals’ are most accurate, as they include cisgender women, transgender men, and nonbinary people who are capable of experiencing pregnancy,” it adds in a statement published in April 2022.

In the research roundup below, we use the language used by the researchers. The studies summarized below address topics such as news coverage of disparities in maternal mortality, the impact of the COVID-19 pandemic and the potential impact of abortion bans. They are followed by additional reading recommendations and resources for journalists.

Research roundup

Historical and Recent Changes in Maternal Mortality Due to Hypertensive Disorders in the United States, 1979 to 2018
Cande V. Ananth; et al. Hypertension, Sept. 2021.

The study assesses how maternal age, year of death and year of birth contributed to hypertension-related maternal death trends in the United States from 1979 to 2018. There were 3,287 maternal deaths related to high blood pressure during those years. The women included in the study were between 15 to 49 years old. The study defines maternal mortality as death during pregnancy or within 42 days of pregnancy.

The findings: The hypertension-related maternal mortality rate among Black women was 5.4 per 100,000 live births. For white women the rate was 1.4. The overall rate was 2.1. Researchers also found being older was associated with an increased rate of hypertension-related maternal mortality. The rate was highest among women 45 to 49 years old. They also found an association between obesity rates and hypertension-related maternal mortality.

Key takeaway: “The study critically underscores the need (1) to develop targeted prenatal interventions, including tight blood pressure control and efforts to reduce body mass index, to ameliorate rates of hypertensive conditions before and during pregnancy and (2) to address the prevailing and concerning race disparity in maternal deaths with hypertension as the cause,” the researchers write.

A related study: “Treatment for Mild Chronic Hypertension during Pregnancy,” by Alan Tita; et al., published in the New England Journal of Medicine in May 2022, finds that controlling blood pressure of pregnant women with mild chronic hypertension leads to better pregnancy outcomes. Also, see this list of solutions from the National Heart, Lung, and Blood Institute.

All-Cause Maternal Mortality in the U.S. Before vs. During the COVID-19 Pandemic
Marie Thoma and Eugene Declercq. JAMA Network Open, June 2022.

The study examines the role of the COVID-19 pandemic in 2020 maternal death rates in the U.S. after the National Center for Health Statistics reported the maternal mortality rate increased 18.4% between 2019 and 2020. Researchers used NCHS data from 2018 to 2020. The study defines maternal mortality as death during pregnancy or within 42 days of pregnancy.

The findings: In 2018 and 2019, 1,588 maternal deaths occurred, a rate of 18.8 per 100,000 live births. The number of maternal deaths during the pandemic, in 2020, was 684, or a rate of 25.1 per 100,000. That’s a relative increase of 33.3%. Absolute and relative changes from before and during pandemic were highest for Hispanic and Black women. COVID-19 was listed as secondary cause of death in 15% of maternal deaths in the second, third and fourth quarter of 2020. This percentage was highest for Hispanic women (32%) and Black women (13%), compared with white women (7.3%), the authors report.

Key takeaway: “Change in maternal deaths during the pandemic may involve conditions directly related to COVID-19 (respiratory or viral infection) or conditions exacerbated by COVID-19 or other health care disruptions (diabetes or cardiovascular disease), but could not be discerned from the data,” researchers write. “Future studies of maternal death should examine the contribution of the pandemic to racial and ethnic disparities and should identify specific causes of maternal deaths overall and associated with COVID-19.”

The Pregnancy-Related Mortality Impact of a Total Abortion Ban in the United States: A Research Note on Increased Deaths Due to Remaining Pregnant
Amanda Jean Stevenson. Demography, December 2021.

The research note estimates the increase in pregnancy-related deaths that would occur because of a higher risk of death from continuing a pregnancy rather than being able to have a legal abortion. The author uses CDC data from 2017.

The findings: If there were a total ban on abortion in the U.S., the estimated number of pregnancy-related deaths would increase by 7% from 675 to 724 in the first year. In following years, the number would increase to 815, a 21% increase. Black people would experience the greatest increase in deaths, at 33% after the first year of a hypothetical total abortion ban across the country.

Key takeaway: “Any state-level total or nearly total ban on abortion could also cause more pregnancy-related deaths … if pregnant people do not successfully access abortion via self-management or travel to another state,” Stevenson writes. “Similarly, other abortion bans (e.g., banning abortions sought for specific reasons or at specific gestations) will also cause more deaths if they lead to more pregnancies being continued.”

Preventing Pregnancy-Related Mental Health Deaths: Insights From 14 U.S. Maternal Mortality Review Committees, 2008-17
Susanna Trost; et al. Health Affairs, October 2021.

The study looks at pregnancy-related deaths due to mental health conditions, including substance use disorders and suicides, based on data from 14 state Maternal Mortality Review Committees between 2008 and 2017. The committees define maternal mortality as death during pregnancy or within one year after pregnancy.

The findings: Among 421 pregnancy-related deaths, 11% were due to mental health conditions. All the pregnancy-related mental health deaths in this study were determined by Maternal Mortality Review Committees to be preventable. Most deaths occurred 36 to 43 days after delivery. In total, 63% of pregnancy-related mental health deaths were by suicide. They were more likely to occur among white people (86%), compared with 2% among Black people. The authors note that the observed racial and ethnic disparities may reflect actual differences in leading causes of death, and differences in screening and identification practices. “For example, White people are more likely to be screened for depression at delivery than Black people,” they write.

Key takeaway: “Our findings show that maternal health cannot be promoted without addressing maternal mental health,” the authors write. “As evidenced by MMRC recommendations, there are many opportunities for preventing pregnancy-related mental health deaths through improvements in coordination of care; access to and availability of naloxone; access to treatment and services for SUD and other mental health conditions; prescribing practices; screenings and assessments; social, family, and peer support; and education for patients, providers, and the public.”

Related: “Pregnancy-Related Deaths: Data from 14 U.S. Maternal Mortality Review Committees, 2008-2017,” by Nicole Davis, Ashley Smoots and David Goodman, published by the Centers for Disease Control and Prevention in 2019, summarizes data from 14 Maternal Mortality Review Committees in the U.S. between 2008 and 2017 to identify trends.

State Abortion Policies and Maternal Death in the United States, 2015‒2018
Dovile Vilda; et al. American Journal of Public Health, May 2021.

The study aims to examine the association between variations in state-level abortion restriction policies in 2015 and maternal mortality rates from 2015 to 2018 in the U.S.

The findings: States that had more abortion restriction policies in place had a 7% increase in maternal mortality compared with states that had fewer restrictions. Abortion-restricting laws may contribute to maternal death directly and indirectly, the authors explain. Abortion restrictions can lead to more unsafe and illegal abortions. They can also put the lives of pregnant women with chronic health conditions at risk, who are forced to carry an unwanted pregnancy to term.

Key takeaway: Restricting access to abortion care at the state level may increase the risk for maternal mortality, the authors write. “Our findings suggest the cumulative impact of abortion restrictions on maternal death, adding to a limited body of empirical studies linking rising maternal mortality and reduced access to reproductive health services in the United States,” they write.

Black Maternal Mortality in the Media: How Journalists Cover a Deadly Racial Disparity
Denetra Walker and Kelli Boling. Journalism, January 2022.

The study is based on interviews with four women journalists who specialize in women’s issues and health and explores how they cover Black maternal mortality. The reporters were Sarah Fentem, a white health reporter who covers medical news for St. Louis Public Radio, an NPR affiliate; Rochaun Meadows-Fernandez, a Black health journalist who writes cultural pieces about Black health; Dr. Cynthia Greenlee, a Black woman who works as a senior editor for an online reproductive health publication; and Nina Martin, a Latina, who worked for ProPublica at the time, covering gender and sexuality issues.

The findings: “Women journalists in this study aimed to be objective and not take a position as advocates, while balancing their work to frame this topic as a public health issue,” the authors write. “By purposefully centering Black women, doctors, and families in stories as sources, the journalists elevated their voices in a broader, societal view to shed light on the experiences of Black women.”

Key takeaway: “The practice of using the voices of marginalized groups to tell their story is an important lesson,” researchers write. “The journalists were clear they were not taking a hard stance on their position as advocates; however, they did feel as if elevating the stories of Black women helped frame this topic as important.”

More studies of note

• “Black maternal mortality in the media: How journalists cover a deadly racial disparity,” by Denetra Walker and Kelli Boling, published in Journalism in January 2022, is based on interviews with four women journalists and finds: “The practice of using the voices of marginalized groups to tell their story is an important lesson. The journalists were clear they were not taking a hard stance on their position as advocates; however, they did feel as if elevating the stories of Black women helped frame this topic as important.”
• “Pregnancy-Related Deaths: Data from Maternal Mortality Review Committees in 36 U.S. States, 2017–2019,” by Susanna Trost; et al., published in September 2022 by the CDC, finds that 80% of pregnancy-related deaths in the U.S. are preventable and that the leading cause of pregnancy-related death varies by race and ethnicity. During the study period, 22% of deaths occurred during pregnancy, 25% occurred on the day of delivery or within 7 days after, and 53% occurred between 7 days to 1 year after pregnancy, the report finds.
• “Abortion Access as a Racial Justice Issue,” by Katy Backes Kozhimannil, Asha Hassan, and Rachel R. Hardeman, published in the New England Journal of Medicine in September 2022, is a perspective article in which the authors say, “Abortion access is a racial justice issue, and it is today’s civil rights battle worthy of tenacious engagement by professionals in medicine, policy, and public health.”
• “Structural Racism and Maternal Health Among Black Women,” by Jamila K. Taylor, published in the Journal of Law, Medicine & Ethics in January 2021, provides a historical overview of racism in American, including the study of obstetrics and gynecology using enslaved Black women in the 1800s, and describes the path to today’s racial inequalities in health care and poor maternal health among Black women.
• “Maternal Mortality in the United States: A Review of Contemporary Data and Their Limitations,” by Dr. Andreea Creanga, published in Clinical Obstetrics and Gynecology in June 2018, provides an overview of maternal mortality data and their limitations in the United States. “Of about 16.1 million induced abortions performed in the United States during 1998 to 2010, 108 women died from abortion-related complications for a mortality ratio of 0.7 deaths per 100,000 induced abortion procedures,” Creanga writes.
• “The Impact of Racism on Maternal Health Outcomes for Black Women,” by Gabrielle T. Wynn, published in University of Miami Race & Social Justice Law Review in December 2019, is a 25-page Juris Doctor dissertation that explores the role of racism on maternal health disparities and offers solutions.
• “U.S. Maternal Mortality Within a Global Context: Historical Trends, Current State, and Future Directions,” by Regine Douthard, et al., provides a perspective on maternal mortality trends in the U.S. and evaluates it in a global context.
• “Healthcare Utilization and Maternal and Child Mortality During the COVID-19 Pandemic in 18 Low- and Middle-Income Countries: An Interrupted Time-Series Analysis with Mathematical Modeling of Administrative Data,” by Tashrik Ahmed; et al., published in PLOS Medicine in August 2022, finds that reduced use of health-care services during the COVID-19 pandemic threatens to reverse global gains in reducing maternal and child mortality.
• “Developing Tools to Report Racism in Maternal Health for the CDC Maternal Mortality Review Information Application (MMRIA): Findings from the MMRIA Racism & Discrimination Working Group,” by Rachel Hardeman; et al., published in Maternal and Child Health Journal, January 2022, describes the results from a working group selected by the CDC Foundation in partnership with maternal health experts, to develop a definition of racism that can be used on the Maternal Mortality Review Information Application form, which is used by Maternal Mortality Review Committees.
• “Maternal Mortality: Trends in Pregnancy-Related Deaths and Federal Efforts to Reduce Them,” by the U.S. Government Accountability Office, published in March 2020, describes the Health and Human Services’ ongoing efforts to prevent pregnancy-related deaths.
• “A Call to Action: Cardiovascular-Related Maternal Mortality: Inequities in Black, Indigenous, and Persons of Color,” by Erin Ferranti; et al., published in the Journal of Cardiovascular Nursing in July 2021, calls for a “focus on comprehensive and systemic approaches that address the social and structural issues underlying maternal health inequities.”
• “Racial Disparities in Maternal and Infant Health: An Overview,” by Samantha Artiga, Olivia Pham, Kendal Orgera and Usha Ranji, published by the Kaiser Family Foundation in November 2020, provides an overview of disparities in maternal and infant health in the U.S.
• “Maternal Mortality in the United States: A Primer,” by Eugene Declercq and Laurie Zephyrin, published by The Commonwealth Fund in December 2020, provides an overview of maternal mortality and related data in the U.S.
• “Maternal Mortality Measurement: Guidance to Improve National Reporting,” by the United National Maternal Mortality Estimation Inter-Agency Group, published by the World Health Organization in July 2022, outlines best practices for data collection and interpretation.

Additional reading

• “Lost Mothers: Maternal Care and Preventable Deaths,” by Nina Martin; et al., published in ProPublica in 2017, is a series about maternal mortality in the United States.
• “When the Water Breaks,” by Layla A. Jones, published in The Philadelphia Inquirer in July 2022, traces America’s maternal mortality crisis back to Philadelphia and America’s first delivery wards and the persisting racial disparities today.
• “Stark Disparities Persist in Missouri’s Maternal Mortality Rate, State Board Finds,” by Tessa Weinberg, published in the Missouri Independent in August 2022, is about a multi-year report that analyzes Missouri’s maternal mortality trends.
• “Postpartum Care Falls Short for Black Women. One Mother is Trying to Fix That,” by Juana Summers, Michael Levitt and Sarah Handel, published on National Public Radio’s All Things Considered in August 2022, is about She Matters, a digital platform focused on disparities in postpartum care for Black mothers.
• “New Alabama Maternal Mortality Report Highlights Preventable Deaths, Substance Abuse,” by Sarah Swetlik, published on AL.com in August 2022, explains the findings of Alabama’s Maternal Mortality Review Committee’s latest report.
• “Raising The Stakes To Advance Equity In Black Maternal Health,” by Michele Cohen Marill, published in Health Affairs in March 2022, is about Penn Medicine tying executive compensation to the goal of reducing complications from giving birth.
• “Getting To The Heart Of America’s Maternal Mortality Crisis,” by Michele Cohen Marill, published in Health Affairs in December 2021, is about a cardio-obstetrics program in a Missouri hospital and a national registry that targets the leading causes of maternal death.

More resources for journalists

• “Maternal Mortality Rates in the United States, 2020,” by Donna Hoyert, published in CDC’s National Center for Health Statistics’ E-Stats in February 2022, provides the latest maternal mortality data in the United States.
• March of Dimes, a U.S. nonprofit organization that focuses on improving health of mothers and babies, has accessible information and annual reports on maternal and infant health in the U.S. Here’s the organization’s information page on maternal deaths.
• The Guttmacher Institute is a research and policy organization focused on sexual and reproductive health rights around the world.
• Black Mamas Matter Alliance is a nonprofit group that advocates for Black maternal and reproductive health. Here’s a list of other organizations advocating for Black mothers.
• Center for Reproductive Rights is a global human rights organization of lawyers and advocates of reproductive rights.
• Perinatal Quality Collaboratives are state or multistate networks of teams that focus on improving the quality of care for mothers and babies. Here’s a list by state.
• Maternal Mortality Review Committees are multidisciplinary committees in states and cities that perform comprehensive reviews of deaths among women within a year of the end of pregnancy. Here’s a list by state.
• Every Mother Counts is a nonprofit organization working to make pregnancy and childbirth safe for mothers around the world. It was founded by American model and humanitarian Christy Turlington Burns after experiencing her own childbirth complications.
• “Eliminating Preventable Maternal Mortality and Morbidity,” is The American College of Obstetricians and Gynecologists’ policy statement on combating maternal mortality.

Free multimedia collections for news stories

• CDC’s Public Health Image Library (PHIL) has some photo and illustration options. You can also download and use charts and graphs from CDC reports, including Morbidity and Mortality Weekly Report.
• SciLine offers video interviews with experts, which journalists can download and use for free.

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An estimated 9.6% of U.S. children were diagnosed with attention-deficit/hyperactivity disorder, commonly known as ADHD, from 2015 to 2018, according to a 2020 report from the Centers for Disease Control and Prevention.

However, diagnosis rates among kids aged 3 to 17 years vary considerably by state, from 5.1% in Nevada to 16.6% in Kentucky, according to state-by-state data the CDC collected in 2011, the most recently available. While diagnoses have risen since 1997, the neurodevelopmental disorder appears to be most prevalent in rural areas. On average, 11.4 % of rural children have been diagnosed with ADHD, compared with 9.2% of children in urban areas, the CDC report shows.

Kids with ADHD have difficulty focusing, taking turns and controlling their behavior – chronic symptoms that interfere with learning and making friends and make it tough for teachers to keep a classroom of students on task.

“For a person to receive a diagnosis of ADHD, the symptoms of inattention and/or hyperactivity-impulsivity must be chronic or long-lasting, impair the person’s functioning, and cause the person to fall behind typical development for their age,” according to the National Institute of Mental Health. “ADHD symptoms can appear as early as between the ages of 3 and 6 and can continue through adolescence and adulthood. Symptoms of ADHD can be mistaken for emotional or disciplinary problems or missed entirely in children who primarily have symptoms of inattention, leading to a delay in diagnosis.”

Amid the COVID-19 pandemic, the symptoms of ADHD pose an even greater challenge for the children who have it and the schools that serve them. Educators nationwide are struggling to help all kids catch up in their studies following school closures in 2020 and 2021, and help all students deal with the anxiety, depression and other mental health issues brought on or made worse by the pandemic.

Journalists reporting on the issue can look to academic research to help them ground and contextualize their coverage. While some findings published in recent months cannot be generalized or applied to anyone outside the sample of people studied, they offer important insights.

Studies published in 2022 provide evidence that:

• The pandemic has exacerbated ADHD symptoms for many students.
• Teachers, who play a key role in the diagnostic process, are less likely to spot ADHD symptoms in girls, especially the oldest girls in their classes. Teachers sometimes mistake the behavior of their youngest male students for symptoms of ADHD.
• Racial and ethnic minorities and children whose families have a lower socioeconomic status are less likely to be diagnosed with and receive medication to treat ADHD than are white children and kids whose families have a higher socioeconomic status.
• Overdiagnosis is most prevalent among white students and kids from higher socioeconomic backgrounds.
• Teenagers with ADHD are less likely to receive and have confidence in COVID-19 vaccines.
• High school students who have experienced trauma such as abuse, neglect and the loss of a loved one are more likely to have ADHD. And high school students who report having ADHD are suspended from school more often than students who do not have it.

ADHD researcher Paul L. Morgan, a professor of education and demography at Penn State, says that while ADHD is not a new issue in education journalism, there are plenty of angles worthy of news outlets’ attention. For example, recent work suggests Black girls in the U.S. are often under-diagnosed for ADHD.

Journalist Claire Sibonney has covered the issue for Kaiser Health News.

“Already subject to unique discrimination at the intersection of gender and race, Black girls with ADHD often remain undiagnosed because their symptoms are mischaracterized,” Sibonney reports. “Signs of inattentiveness or impulsivity, two main features of the disorder, could be mistaken for laziness or defiance.”

Morgan, who’s also director of the Penn State Center for Educational Disparities Research, says he would like to see journalists report on ADHD among girls who are racial and ethnic minorities as well as students whose primary language is not English.

“I would like to see more coverage of the barriers to diagnosis in non-White and non-English-speaking communities,” he wrote via email while traveling for work.

Morgan pointed out that scholars are trying to understand why ADHD diagnoses are on the rise. Studies suggest the increase might be driven in part by overdiagnosis. Teachers generally contact parents or initiate a diagnostic referral when they suspect a child has ADHD.

“There has not yet been much empirical study of the groups of children who are likely being over-diagnosed and treated for ADHD, despite repeated findings suggesting that increasing prevalence may in part be explained by over-diagnosis,” Morgan wrote via email. “To what extent parents may be using ADHD diagnosis and treatment as a way to increase their children’s academic achievement, particularly in privileged communities, is unclear.”

Another issue needing investigation: whether and how social media might be influencing diagnoses and treatment. If social media is helping disseminate information about ADHD, that also might prompt more children and their families to seek help from medical professionals.

To help journalists investigate these and other angles, we’ve summarized a sampling of the papers published in 2022 that look at ADHD in children. We will periodically update this list as new research becomes available.

COVID-19 and ADHD

Systematic Review: Investigating the Impact of COVID-19 on Mental Health Outcomes of Individuals With ADHD
Julie T. Behrmann, Julie Blaabjerg, Josefine Jordansen and Kristine M. Jensen de López. Journal of Attention Disorders, May 2022.

The coronavirus pandemic has affected the mental health of individuals diagnosed with ADHD in various ways, including exacerbating ADHD symptoms and heightening feelings of loneliness, anxiety and sadness, according to a systematic review of studies of the issue.

Researchers examined 12 studies conducted in nine countries involving a combined 3,028 people ranging in age from 4 to 27 years.

Most studies “identified negative behavioral outcomes with respect to symptoms of ADHD such as increased activity levels, inattention, impulsivity, restlessness, and disruptive behavior,” the authors write. Five studies found individuals with ADHD experienced poorer sleep quality and spent more time watching TV, using social media and playing video games.

“The impact of the pandemic was generally negative,” the authors write. “Increased challenges within the domain of social competences were reported in terms of isolation and relationships with parents. These aspects, along with the negative impact of lack of peer exposure may be particularly acute for tweens and adolescents, while having less impact on younger children, young adults, and adults with ADHD.”

The findings indicate some people with ADHD experienced positive changes, however – improved mood and academic performance, for example. The authors explain that differences in the experiences of people with ADHD “may be attributable to the fact that individuals with ADHD constitute a heterogeneous group and consequently display different symptoms during the COVID-19 pandemic depending on, for example, emotion regulation, IQ and the severity of existing ADHD symptoms.”

COVID-19 Resulted in Lower Grades for Male High School Students and Students With ADHD
Rosanna Breaux; et al. Journal of Attention Disorders, May 2022.

This small study looks at how the COVID-19 pandemic affected the grade-point averages of different groups of students during the 2020-21 academic year. The key takeaway: GPAs fell across several student groups but students diagnosed with ADHD saw a larger reduction.

The authors drew their findings from a sample of 238 students at two high schools, one in the southeastern U.S. and the other in the Midwest. About half the students were diagnosed with ADHD prior to the pandemic, 55% were male and 82% were white.

The average GPA for students with ADHD dropped from a 3.51 in Spring 2020 to a 3.28 in Fall 2020. Boys, as a whole, saw their GPAs slide from a 3.63, on average, to a 3.45. GPAs for Latino students who aren’t Black dipped to a 3.56, down from a 3.69.

Adolescents With ADHD Are At Increased Risk for COVID-19 Vaccine Hesitancy
Melissa R. Dvorsky, Rosanna Breaux, Joshua M. Langberg and Stephen P. Becker. Journal of Psychiatric Research, June 2022.

Teenagers with ADHD expressed less confidence in the safety of COVID-19 vaccines and less willingness to receive them than did teens without ADHD, this study finds. In fact, kids with ADHD were more than twice as likely to be vaccine hesitant.

Researchers examined the results of four online surveys that a sample of 196 high school students completed from March to May 2021. The students, half of whom had ADHD, attended two high schools in the Southeast and Midwest.

When kids were asked, “If a vaccine that could prevent COVID-19 were made available to you, would you accept it for yourself?” 9% said “maybe” and 9% answered “no.” But 24% of students with ADHD said “maybe” and 15% said “no.”

The teenagers also were asked to rate how closely they agreed or disagreed with the statement, “I am completely confident COVID-19 vaccines are safe.” While 39% of all the students reported they “strongly agree,” 22% of kids with ADHD did.

Researchers indicate that difficulty regulating attention and behavior could influence a teen’s attitude about COVID-19 vaccines.

“Vaccine uptake, willingness, and confidence is especially low among adolescents with ADHD, perhaps in part due to core symptoms of ADHD and associated impairments likely impacting planning, motivation, and execution of vaccination, risk appraisals and perceived susceptibility to COVID-19,” they write.

Diagnosing ADHD

Sociodemographic Disparities in Attention-Deficit/Hyperactivity Disorder Overdiagnosis and Overtreatment During Elementary School
Paul L. Morgan, Adrienne D. Woods and Yangyang Wang. Journal of Learning Disabilities, 2022.

Morgan is the lead author on this study, which suggests U.S. schoolchildren are overdiagnosed with ADHD and that white kids and kids from higher socioeconomic backgrounds are most likely to be overdiagnosed.

The authors studied a sample of 1,070 children who had been diagnosed with ADHD at some point between the first and fifth grades. The sample is a subset of students who participated in the Early Childhood Longitudinal Study: Kindergarten Class of 2010–2011, which followed a nationally representative group of children from the fall semester of kindergarten through the spring semester of fifth grade.

Each year of the study, teachers and parents rated kids’ behavioral functioning and field staff from the National Center for Education Statistics assessed their executive functioning. Children also took tests to demonstrate their academic achievement.

Researchers discovered that children who rated “above average” in terms of their behavioral, academic or executive functioning – meaning they probably did not have ADHD — were more likely to be diagnosed with and treated for ADHD if they were white.

For example, 27.3% of white children diagnosed with ADHD had demonstrated above average academic achievement prior to their diagnosis. About 19% of racial and ethnic minorities did.

Likewise, 30.4% of children who were diagnosed with ADHD after displaying above average levels of academic achievement were from high socioeconomic backgrounds, and 20.1% were low socioeconomic backgrounds.

The authors offer several possible explanations for the differences. For one, they suggest wealthier families might be seeking ADHD diagnoses for their children to gain access to ADHD medication, designed to improve kids’ ability to focus.

“Our results are consistent with some White families being more likely to seek out ADHD diagnoses and treatments for their children even when their children display no or only mild symptoms or impairments, possibly so as to increase the children’s academic achievement,” the authors write.

Meanwhile, many parents who are not white might be resisting ADHD diagnoses. They “have reported skepticism about the accuracy of ADHD diagnosis and treatment by providers and instead are more likely to view diagnosis and treatment as an attempt to exert racialized social control or because school environments are unresponsive to the needs of non-White children,” the authors write.

ADHD Misdiagnosis: Causes and Mitigators
Jill Furzer, Elizabeth Dhuey and Audrey Laporte. Health Economics, June 2022.

Kindergarten teachers often mistake boys’ behavior for symptoms of ADHD, especially the behavior of their youngest male students, finds this 15-year study of Canadian schoolchildren. Kindergarten teachers also tended to miss ADHD symptoms in girls, especially the oldest girls in the class.

“For the youngest students, teachers misattribute their relative immaturity as ADHD, while overlooking the oldest students if their behavior is comparatively controlled,” write the authors, who examined data for a sample of 7,510 kindergarten students who participated in Canada’s National Longitudinal Survey of Child and Youth, launched in 1994 with follow-up surveys every two years until 2008.

The researchers note that teachers with special education training don’t make such errors. They also note that red shirting – when parents postpone kindergarten entry for a year, often to give their children more time to mature – appears to “limit over-assessment of the youngest males to some degree.” But the practice, more common among higher-income families, “provides a pathway by which socioeconomic inequality may generate inequalities in health and education outcomes.”

ADHD, trauma and student suspension rates

Why Are We Really Suspending this Student? The Relationship Between Adverse Childhood Experiences, ADHD, and High School Suspension Rates
Kelly Wynne Lettieri and Travis Lewis. Journal of Trauma Studies in Education, May 2022.

This small study of students at a high school in the southeastern U.S. finds that kids who experienced trauma earlier in their childhood were more likely to have ADHD. It also finds that students who reported having ADHD were suspended from school more often. 

For the study, 750 students answered 10 questions about their childhoods to gauge whether they had experienced trauma such as abuse, neglect or the loss of a loved one. Their responses determined their ACE, or Adverse Childhood Experiences, score. Students also completed a demographic questionnaire that included questions about whether they had been diagnosed with ADHD and took medication for it.

Researchers collected student disciplinary data and used that information to determine whether having an ADHD diagnosis is linked to high suspension rates and high ACE scores. ACE scores are higher for kids who reported experienced multiple traumatic events.

The researchers write that their findings “are significant because they provide evidence of a link between trauma and negative student behaviors in schools.” They also stress that pediatricians should conduct trauma screenings when evaluating children exhibiting symptoms of ADHD.

“When presented with symptoms that appear similar to that of ADHD, if there is no trauma assessment such as the ACE questionnaire administered, the result may be a diagnosis of and prescription for medication for ADHD,” they write. “The problem with this outcome is that, while the medication may help to treat some symptoms such as difficulty paying attention, hyperactivity, and being easily distracted, it is not treating the root of the problem, which is the trauma that occurred during the individual’s childhood or may still be occurring when the doctor treats them for ADHD.”

The authors recommend teachers, administrators and other school personnel receive trauma-related training to reduce the amount of class time students lose when they get suspended for what might be trauma-related behavior.

The Journalist’s Resource is part of the Mental Health Parity Collaborative, a group of news organizations that are covering challenges and solutions to accessing mental health care in the U.S. The collaborators on this project include The Carter Center, The Center for Public Integrity, and newsrooms in Arizona, California, Georgia, Illinois, Pennsylvania, and Texas.

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This piece about pulse oximeters was updated on Nov. 11, 2022, with information about the latest FDA hearing.

Pulse oximeters are small medical devices that clip on the fingertips and estimate the amount of oxygen in the blood. They are ubiquitous in doctors’ offices and hospitals and became popular during the pandemic as a way for people battling COVID-19 to monitor their oxygen levels at home.

Developed in the 1970s, pulse oximetry has been integrated into the routine monitoring of hospitalized patients and has become a fundamental tool in diagnosis and treatment of patients, especially those with respiratory illnesses. The devices have taken an even more significant role in hospitals since the COVID-19 pandemic began.

“For COVID, we became so dependent on pulse oximeters for [patient] triage,” says Dr. Theodore Iwashyna, an intensive care unit physician and senior author of a recent study on pulse oximeters in The BMJ. In addition, the readings from devices became critical in helping doctors decide which hospital patients were eligible for COVID-19 medication like remdesivir.

But a series of recent studies have found that pulse oximeters are more likely to give inaccurate readings for people with darker skin, especially Black people, by overestimating their blood oxygen levels. This is particularly important for critically ill patients, where doctors constantly rely on pulse oximeter readings to decide how much oxygen to give patients. 

Unrecognized low blood oxygen levels can damage organs, most importantly the brain and the kidneys. Some studies that include data from COVID-19 patients suggest that inaccurate readings by pulse oximeters may be associated with worse outcomes for Black and Hispanic patients.  

This is not the first time researchers have brought up the issue. Problems with pulse oximeters have been recorded since the late 1980s but those problems resurfaced as the pandemic spurred more use of the device and highlighted existing racial disparities in health care. 

Researchers say today’s pulse oximeters aren’t calibrated to account for darker skin, because they’re built on data from mostly light-skinned, healthy study populations whose diversity doesn’t reflect that of the overall U.S. population. 

Some manufacturers of pulse oximeters have asserted that their devices are accurate. But if their data doesn’t show a problem, “then how do [they] explain why this problem keeps showing up in critically ill patients?” asks Iwashyna, professor of medicine and public health at Johns Hopkins University. “There’s a role for journalists to keep asking the companies to comment on this and explain it.” 

Dr. Eric Gottlieb, lecturer at the Laboratory for Computational Physiology at MIT and lead author of another study on pulse oximetry, also encourages journalists “to spread the word and raise awareness about” disparities in pulse oximetry readings.  

During his research, Gottlieb was asked frequently what patients and physicians should know about the findings and whether they should consider them in their medical decision making, he says.

“And my response has been yes, I want them to know about it and be aware, but I think it’s really difficult to put the onus on either the patient or the physicians,” says Gottlieb. “I think this really puts the onus on the manufacturers, institutions and the government to really ensure that these devices are used equitably.” 

In a safety communication in February 2021, the U.S. Food and Drug Administration referenced a 2020 study and said the pulse oximeters’ accuracy may be affected by several factors including skin pigmentation. In June, the agency announced in June plans to convene a public meeting to discuss the available evidence on the accuracy of pulse oximeters. And in November, an expert panel urged the agency to improve its accuracy standards and the testing of the devices.

How pulse oximeters work

Blood oxygen levels are calculated in percentages. Generally, in healthy people, a blood oxygen level between 95% and 100% are considered normal, but the level varies for people who have chronic lung conditions such as asthma. In most people, blood oxygen levels below 88% require medical attention.

“Once you get below 88%, we start freaking out very quickly because it has a big impact on how much oxygen is getting to your tissues,” says Iwashyna.

There are two ways to measure the level of oxygen in the blood. The most accurate method is through a blood draw from an artery, usually in the wrist, which can be painful. The other method is pulse oximetry.

Medical professionals in hospitals depend on pulse oximeter readings because they are done in seconds, while it can take up to an hour for the results of an arterial blood sample to become available. 

Pulse oximeters work by shining infrared and red lights through the skin. The devices then calculate the amount of light absorbed by hemoglobin — proteins inside red blood cells that carry oxygen from the lungs to tissues and organs. 

“So it’s taking advantage of the fact that the light gets absorbed differently when the hemoglobin has oxygen on it versus when it doesn’t,” says Iwashyna. 

Researchers haven’t exactly pinpointed why pulse oximeters are more likely to give inaccurate readings in people with darker skin, but one hypothesis is that some of the device’s light might be absorbed by melanin in the skin. Melanin is the substance that produces skin, eye and hair pigmentation. People with darker skin have more melanin. 

Although skin tone is a predominant suspected factor affecting pulse oximetry readings, other factors may also play a role. 

“I think it’s important to not make assumptions and really explore blood chemistry and other factors like differences by age and gender that can have effects as well,” said Gottlieb. 

Errors in pulse oximeter readings can also be caused by motions such as shivering, interfering substances in the blood, misplacement, and low blood circulation. Even nail polish can affect the device’s readings.

“They mostly work,” says Iwashyna. “They just don’t work a lot and the times that they don’t work a lot happens more in Black patients.” 

Below, we have gathered several studies that show the problem of racial bias in pulse oximetry. In most instances, researchers compare pulse oximetry readings with the results of arterial blood draw, usually done within 10 minutes of each other, to find out how accurate the devices’ readings are. And the most common condition they look for is hidden hypoxemia — also called occult hypoxemia — which is typically when a pulse oximeter shows a reading of 92% to 96% while arterial blood oxygen saturation is less than 88%. 

Research roundup

Racial Bias and Reproducibility in Pulse Oximetry among Medical and Surgical Inpatients in General Care in the Veterans Health Administration 2013-19: Multicenter, Retrospective Cohort Study
Valeria S. M. Valbuena; et al. The BMJ, July 2022.

The study: Researchers tested the discrepancies between pulse oximetry readings and arterial blood draw results among hospital patients. Previous studies have shown pulse oximetry’s racial bias in patients in intensive care units. The authors of this study wanted to see if the bias extended to hospital patients not in intensive care. Specifically, researchers wanted to find out how often pulse oximetry misses low blood oxygen, or hypoxemia, in Black patients.

The study looked at 30,039 pairs of pulse oximeter readings and results from arterial draws done within 10 minutes of each other among patients at 100 hospitals in the U.S. Veterans Health Administration, from 2013 to 2019. Seventy-three percent of the patients were white, 21.6% were Black and 5.4% were Hispanic or Latino.

Key findings: The analysis showed that Black patients had higher odds of having low blood oxygen that was not detected by pulse oximetry compared with white patients. When the pulse ox showed the patient’s blood oxygen saturation at 92% or higher, which is considered fine, the arterial draw showed oxygen levels less than 88%, which is considered dangerous. The probability of undetected low blood oxygen using a pulse oximeter was 15.6% in white veterans, 19.6% in Black veterans and 16.2% in Hispanic or Latino veterans. “This difference could limit access to supplemental oxygen and other more intensive support and treatments for Black patients,” the authors write.

The analysis also shows that in patients who had two paired readings of pulse ox and blood samples, one pair done earlier in the day and one pair later, the readings were less likely to be consistent between morning and evening among Black patients compared with white patients, making pulse oximeters a less reliable source of estimating the patients’ blood oxygen saturation. 

Key takeaways: The researchers estimate that 573,000 Black patients in the VA system might have had undetected hypoxemia during the study period — roughly 80,000 patients a year – which could have been detected if the devices worked as well as they do in white patients. “Large integrated health systems such as the Veterans Health Administration and NHS could have a role to purchase and use only pulse oximeters proven to provide equivalent accuracy in Black patients rather than devices of unproven equity,” they write. 

Assessment of Racial and Ethnic Differences in Oxygen Supplementation Among Patients in the Intensive Care Unit
Eric Raphael Gottlieb; et al. JAMA Internal Medicine, July 2022. 

The study: The researchers wanted to know if racial and ethnic disparities in the administration of supplemental oxygen in an intensive care unit in Boston were associated with discrepancies in pulse oximeter readings. The study included 3,069 patients admitted to the ICU for at least 12 hours before needing advanced respiratory support, from 2008 to 2019. Eighty seven percent of the patients were white, 6.7% Black, 3.6% Hispanic and 2.7% Asian.

The authors used data from the Medical Information Mart for Intensive Care critical care data set (MIMIC-IV), which includes patients admitted to the Beth Israel Deaconess Medical Center in Boston. Instead of analyzing data from specific points in time, they averaged oxygenation levels and flow rates from nasal cannulas for up to 5 days from ICU admission or until the patients were intubated or received more advanced respiratory support.

Key findings: Asian, Black and Hispanic patients had higher pulse oximetry readings for a given oxygen saturation obtained from a blood sample and were given significantly less supplemental oxygen compared with white patients. When low levels of oxygen are undetected — hidden hypoxemia — patients are at a higher risk of worse outcomes, including higher death rates. These differences may contribute to racial and ethnic disparities in outcomes, including during the COVID-19 pandemic, the authors write. 

Key takeaway: The authors note that the study doesn’t show the causal association of disparities in outcomes and differences in oxygen supplementation, but “the finding that race and ethnicity could affect how much oxygen a patient receives is notable and concerning,” they write. “Our findings present a unique and compelling opportunity to improve equity through device reengineering and by reevaluating how data are interpreted. However, this should be done with caution, as some past attempts to correct for race and ethnicity in algorithms have exacerbated disparities and are subject to ethical concerns.”

In an accompanying editorial, Drs. Eric Ward and Mitchell Katz write: “Health care systems, including academic centers, are large-scale purchasers of pulse oximeters. If they make a commitment to buy only devices that function across skin tones, manufacturers would respond.”

Racial and Ethnic Discrepancy in Pulse Oximetry and Delayed Identification of Treatment Eligibility Among Patients With COVID-19
Ashraf Fawzy; et al. JAMA Internal Medicine, May 2022. 

The study: The researchers wanted to find out if there are racial and ethnic biases in pulse oximetry among COVID-19 patients and whether there is an association between those potential biases and unrecognized or delayed oxygen administration. They analyzed data for 7,126 COVID-19 patients from five hospitals in the Johns Hopkins Health System. About 38% of the patients were white, 39.3% were Black, 17.7% were Hispanic and 5.2% were Asian.

Compared with white patients, pulse oximeters overestimated oxygen levels by an average of 1.7% in Asian patients, 1.2% in Black patients and 1.1% in Hispanic patients, they found. 

In a subgroup of 1,903 patients, Black patients were 29% less likely than white patients to have their eligibility for oxygen treatment recognized by the pulse oximeters. For about a quarter of patients in this subgroup, the device never recognized their eligibility for oxygen treatment. More than half of those patients were Black. 

Key findings: The overestimation of blood oxygen by pulse oximeters was associated with “a systematic failure to identify Black and Hispanic patients who were qualified to receive COVID-19 therapy and a statistically significant delay in recognizing the guideline-recommended threshold for initiation of therapy,” the researchers write. 

Key takeaway: Inaccuracies in pulse oximetry readings among racial and ethnic minority patients should be examined as a potential explanation for disparities in COVID-19 outcomes, the authors write. 

In an accompanying editorial, Drs. Valeria Valbuena, Raina Merchant and Catherine Hough write: “The economics associated with ignoring the issue cannot be excluded from this discussion. Hospitals and practitioners continue to buy and use these devices despite their inaccuracy for non-White patients. The observation that designing a new device and exchanging millions of machines in hospitals and clinics across the country may be deemed unpopular could suggest that racial equity in patient care is not something these institutions are willing to pay for — or at least not enough of a priority to insist on devices that work equitably.”

Analysis of Discrepancies between Pulse Oximetry and Arterial Oxygen Saturation Measurements by Race and Ethnicity and Association with Organ Dysfunction and Mortality
An-Kwok Ian Wong; et al. JAMA Network Open, November 2021. 

The study: The researchers investigated whether pulse oximetry readings, hidden low blood oxygen (occult hypoxemia) and clinical outcomes differed among racial and ethnic groups. They used five databases with a total of 87,971 patients from 215 hospitals and 382 intensive care units in the U.S. 

Key findings: Discrepancies in pulse oximetry accuracy among racial and ethnic minorities were associated with higher rates of hidden hypoxemia, death and organ dysfunction. Although pulse oximeter readings missed low blood oxygen levels in all racial and ethnic groups, the incidence was highest in Black patients (6.9%) and Hispanic patients (6%), compared with Asian patients (4.9%) and white patients (4.9%). Patients with hidden hypoxemia were more likely to experience organ dysfunction or die in the hospital. 

Key takeaway: “The important message is that health care devices, like predictive algorithms and medications, must be designed more inclusively to achieve comparable measurement accuracy irrespective of race and ethnicity,” the authors write. “It is important to be cognizant of the patient population in which pulse oximeters used in critical care are validated. There is a need for more transparency in the labeling of all patient care devices, including the detailed characteristics of groups on which they were evaluated. To further achieve more equitable health outcomes, we call for reinforced testing and recalibration of health care devices — across all target patient populations.”

Also read this opinion piece, “The accuracy of pulse oximeters shouldn’t depend on a person’s skin color,” by the study’s lead author, Dr. A. Ian Wong, published in STAT in July 2022.

Racial Bias in Pulse Oximetry Measurement
Michael W. Sjoding; et al. The New England Journal of Medicine, December 2020.

The study: Published during the early months of the pandemic, the authors investigated the clinical significance of potential racial bias in pulse oximetry measurement. The study involved 1,333 white patients and 276 Black patients at the University of Michigan Hospital from January to July 2020, and 7,342 white patients and 1,050 Black patients in intensive care units at 178 hospitals from 2014 through 2015. Researchers compared pulse oximetry readings and oxygen levels from arterial blood samples, done within 10 minutes of each other. They analyzed the results for hidden hypoxemia, which occurs when arterial oxygen saturation is less than 88% even though a pulse oximeter shows 92% to 96% saturation. 

The findings: The analysis shows that in the University of Michigan cohort, 11.7% of Black patients had hidden hypoxemia compared with 3.6% of white patients. In the multicenter cohort, 17% of Black patients had hidden hypoxemia compared with 6.2% of white patients. “Thus, in two large cohorts, Black patients had nearly three times the frequency of occult hypoxemia that was not detected by pulse oximetry as white patients,” the authors write.

Key takeaway: “Our results suggest that reliance on pulse oximetry to triage patients and adjust supplemental oxygen levels may place Black patients at increased risk for hypoxemia. It is important to note that not all Black patients who had a pulse oximetry value of 92% to 96% had occult hypoxemia,” the authors write. “Our findings highlight an ongoing need to understand and correct racial bias in pulse oximetry and other forms of medical technology.”

Additional studies

• “Reliability of Pulse Oximetry in Titrating Supplemental Oxygen Therapy in Ventilator-Dependent Patients,” published in CHEST in June 1990, is among the first studies showing that pulse oximetry readings were less reliable in Black patients compared with white patients. 
• “Racial Bias in Pulse Oximetry Measurement Among Patients About to Undergo Extracorporeal Membrane Oxygenation in 2019-2020: A Retrospective Cohort Study,” published in CHEST in April 2022, finds that the rate of hidden hypoxemia was 21.5% in Black patients and 8.6% in Hispanic patients, compared with 10.2% in white patients and 9.2% in Asian patients, all of whom had had their oxygen reading 6 hours before they were given extracorporeal membrane oxygenation, or ECMO, which is a life support machine. 
• “Pulse Oximeter Measurements Vary across Ethnic Groups: An Observational Study in Patients with COVID-19,” published in the European Respiratory Journal in April 2022, shows that false readings by pulse oximeters were nearly 6.9% higher than the levels obtained from an arterial blood samples in patients of mixed ethnicity with COVID-19, compared with 5.4% in Black patients, 5.1% in Asian patients and 3.2% in white patients.
• “Pulse Oximetry for Monitoring Patients with Covid-19 at Home — A Pragmatic, Randomized Trial,” published in the New England Journal of Medicine in May 2022, finds that compared with remotely monitoring patients’ shortness of breath with automated check-ins, the addition of pulse oximetry did not save more lives or keep more people out of the hospital. 
• “Self-reported Race/Ethnicity and Intraoperative Occult Hypoxemia: A Retrospective Cohort Study,” published in Anesthesiology in May 2022, finds prevalence of hidden hypoxemia was significantly higher in Black patients (2.1%) and Hispanic patients (1.8%), compared with white patients (1.1%). Also read the study’s accompanying editorial. 
• “Racial Disparities in Occult Hypoxemia and Clinically Based Mitigation Strategies to Apply in Advance of Technological Advancements,” published in Respiratory Care in June 2022, finds the frequency of hidden hypoxemia was 7.9% in Black patients compared with 2.9% in white patients. 
• “Critical Care Trainees Call for Pulse Oximetry Reform,” published in The Lancet Respiratory Medicine in March 2021, calls on regulatory bodies in the U.S., U.K. and Europe to “to conduct an immediate review of the accuracy of pulse oximeters in patients of color and to only approve oximeters that are proven to perform equivalently in White patients and patients of color in the clinically relevant range of 88% – 96%.”
• “Racial Discrepancy in Pulse Oximeter Accuracy in Preterm Infants,” published in the Journal of Perinatology in October 2021, finds a modest but consistent difference in pulse oximetry reading errors between Black and white infants, with increased incidence of hidden hypoxemia in Black infants.

More on pulse oximeters

• “How a Popular Medical Device Encodes Racial Bias,” published in Boston Review in August 2020 by Amy Moran-Thomas, an associate professor of anthropology at MIT, delves deep into the history of pulse oximeters and explores the current research and conversations on racial bias in pulse oximetry results. Moran-Thomas wrote another in-depth article, “Oximeters Used to Be Designed for Equity. What Happened?” in Wired in June 2021.
• “Pulse Oximetry: Understanding its Basic Principles Facilitates Appreciation of its Limitations,” published in Respiratory Medicine in June 2013, is an in-depth technical paper on how the device works. 
• “When it comes to darker skin, pulse oximeters fall short,” by Craig Lemoult of WGBH News, offers a series of solutions in the works to address the shortfalls of current pulse oximeters. Researchers are experimenting with devices that use polarized light, which isn’t absorbed by skin pigmentation, or measure the person’s skin tone, he reports.

The post Racial disparities in pulse oximeter readings: Research roundup appeared first on The Journalist's Resource.

Artificial intelligence has come to stay in the health care industry. The term refers to a constellation of computational tools that can comb through vast troves of data at rates far surpassing human ability, in a way that can streamline providers’ jobs. Some types of AI commonly found in health care already are:

• Machine learning AI, where a computer trains on datasets and “learns” to, for example, identify patients who would do well with a certain treatment.
• Natural language processing AI, which can identify the human voice, and might transcribe a doctor’s clinical notes.
• Rules-based AI, where computers train to act in a specific way if a particular data point shows up–these kinds of AI are commonly used in electronic medical records to perhaps flag a patient who has missed their last two appointments.

Regardless of the specific type of AI, these tools are generally capable of making a massive, complex industry run more efficiently. But several studies show it can also propagate racial biases, leading to misdiagnosis of medical conditions among people of color, insufficient treatment of pain, under-prescription of life-affirming medications, and more. Many patients don’t even know they’ve been enrolled in healthcare algorithms that are influencing their care and outcomes.

A growing body of research shows a paradox, however. While some algorithms do indeed exacerbate inequitable medical care, other algorithms can actually close such gaps.

Popular press tends to cover AI in medicine only when something goes wrong. While such reports are critical in holding institutions to account, they can also paint the picture that when AI enters health care, trouble is always around the corner. If done correctly, AI can actually make health care fairer for more people.

Historically, much of the research in the medical sciences and in the biological sciences has relied on subject pools of white—often male—people of European ancestry. These foundational studies on everything from normal internal body temperature to heart disease become the stuff of textbooks and trainings that doctors, nurses, and other health care professionals engage with as they move up the professional ladder.

However, those studies offer a limited, one-size-fits-all view of human health that opens the door to racial bias—which patients get treated and how. The most easily graspable example of this type of knowledge gone wrong is consulting images of white skin to diagnose dermatological diseases across all skin types, when such diseases may manifest in unique ways depending on the pigmentation of someone’s skin.

When AI is trained by data that lack diversity, then it is more likely to mimic the same racial bias that healthcare professionals can themselves exhibit. A poorly structured AI training dataset is no better (and in fact is sometimes worse) than a human with a medical degree predicated on lessons learned about the health of primarily white patients.

On the flipside, when AI is trained on datasets that include information from a diverse population of patients, it can help move the health care field away from deep-seated biases.

Below are summaries of some of the research on the intersection of AI and race.  

Dissecting Racial Bias in an Algorithm Used to Manage the Health of Populations

Ziad Obermeyer, Brian Powers, Christine Vogeli, and Sendhil Mullainathan. Science, October 2019.

What the researchers focused on: This study dove into how a nationally circulated health care algorithm perpetuated the under-serving of Black patients as compared with white patients. Such algorithms have the potential to do immense harm, by replicating the same racial biases in play by humans, but at an even more massive scale, the authors write.

What they found: Commercially applied risk-prediction algorithms are among the most common types of AI the health care industry currently uses. They’re applied to the care of some 200 million Americans every year. In this study, researchers show one unnamed algorithm assigned Black patients the same level of health risk as white patients, when in reality the Black patients were sicker.

The researchers learned that the machine-learning algorithm had trained itself to to see health care costs as a proxy for a patient’s level of health, when in reality it is reflective of the health care industry’s inequitable investment in some patient populations over others.

In other words, the algorithm assumed that because it cost hospitals less to care for Black patients, Black patients were healthier and required less care. However, hospital costs are lower for Black patients even when they are sicker than white patients, because hospitals funnel fewer resources toward the care of sick Black patients. The researchers suggest that training the algorithm not to equate cost with health would undo this tripwire.   

What researchers did with their findings: “After completing the analyses described above, we contacted the algorithm manufacturer for an initial discussion of our results,” the authors write. “In response, the manufacturer independently replicated our analyses on its national dataset of 3,695,943 commercially insured patients. This effort confirmed our results—by one measure of predictive bias calculated in their dataset, Black patients had 48,772 more active chronic conditions than White patients, conditional on risk score—illustrating how biases can indeed arise inadvertently.”

Researchers then began experimenting with solutions with the algorithm manufacturer and have already made improvements in the product.

“Of course, our experience may not be typical of all algorithm developers in this sector,” they write. “But because the manufacturer of the algorithm we study is widely viewed as an industry leader in data and analytics, we are hopeful that this endeavor will prompt other manufacturers to implement similar fixes.”

AI Recognition of Patient Race in Medical Imaging: A Modelling Study

Judy Wawira Gichoya; et al. The Lancet: Digital Health, May 2022.

What the researchers focused on: Previous research has shown that AI can be trained to detect a person’s race from medical images, even though human experts who are looking at the images aren’t able to tell the patient’s race just from looking at those images. The authors wanted to find out more about AI’s ability to recognize a patient’s race from medical images.           They analyzed a total of 680,201 chest X-rays across 3 datasets where Black patients comprised 4.8% to 46.8% of the subjects, white patients 42.1% to 64.1%, Asian patients 3.6% to 10.8%; 458,317 chest CTs also across 3 datasets where Black patients comprised 9.1% to 72% of the subjects, white patients 28% to 90.9% and Asian patients were unrepresented; 691 digital radiography X-rays where Black patients comprised 48.2% of the subjects, white patients 51.8%, and Asian patients were unrepresented; 86,669 breast mammograms where Black patients comprised 50.4% of the subjects, white patients 49.6% and Asian patients were unrepresented; and 10,358 lateral c-spine X-rays where Black patients comprised 24.8% of the subjects, white patients 75.2%, and Asian patients were unrepresented. The images themselves contained no racial information and represented different degrees of image clarity, full and cropped views and other variations.   

What they found: The deep learning model was able to identify a patient’s race accurately from medical images that contained no identifiable racial information. Researchers thought perhaps the model was learning to do this by matching known health outcomes with racial information.

There is “evidence that Black patients have a higher adjusted bone mineral density and a slower age-adjusted annual rate of decline in bone mineral density than White patients,” the researchers write, so they thought perhaps they could trick the model by cropping out parts of medical images that showed such characteristic bone density information. Even still, the model was able to identify the patient’s race from the images. “This finding is striking as this task is generally not understood to be possible for human experts,” the authors write.

How they explain it: “The results from our study emphasize that the ability of AI deep learning models to predict self-reported race is itself not the issue of importance. However, our finding that AI can accurately predict self-reported race, even from corrupted, cropped, and noised medical images, often when clinical experts cannot, creates an enormous risk for all model deployments in medical imaging,” the researchers write. “The regulatory environment in particular, while evolving, has not yet produced strong processes to guard against unexpected racial recognition by AI models; either to identify these capabilities in models or to mitigate the harms that might be caused.”

An Algorithmic Approach to Reducing Unexplained Pain Disparities in Underserved Populations

Emma Pierson; et al. Nature Medicine, January 2021.

What the researchers focused on: Previous research has shown Black patients are more likely than white patients to have their pain dismissed and untreated. One example is knee pain due to osteoarthritis. Researchers wanted to find out if an AI could undo biases in how knee pain is diagnosed and treated.

What they found: The researchers used a deep learning model trained on X-rays of osteoarthritis in the knee of 2,877 patients —18% of whom were Black, 38% were low-income, and 39% were non-college graduates  —  to predict the level of pain a patient would be expected to have based on the progression of their osteoarthritis. The model was better at assigning pain levels to underserved patients than human radiologists. The researchers conclude that the model was able to predict pain even when the imaging did not necessarily show the expected level of disease severity. That’s because patients of color are more likely than white patients to have “factors external to the knee” that influence their level of pain, such as work conditions and higher stress, the researchers write. In other words, the same level of osteoarthritis severity can result in very different levels of pain depending on the patient population, and evaluating a patient without that context can lead to underdiagnosis for underserved patients. In this case, an AI could solve an issue that persists because of human racial bias.

How they explain it: “In addition to raising important questions regarding how we understand potential sources of pain, our results have implications for the determination of who receives arthroplasty for knee pain … Consequently, we hypothesize that underserved patients with disabling pain but without severe radiographic disease could be less likely to receive surgical treatments and more likely to be offered non-specific therapies for pain. This approach could lead to overuse of pharmacological remedies, including opioids, for underserved patients and contribute to the well-documented disparities in access to knee arthroplasty.”

Other academic studies, reports and commentaries to consider:

The Algorithm Bias Playbook

Ziad Obermeyer, Rebecca Nissan, Michael Stern, Stephanie Eaneff, Emily Joy Bembeneck, and Sendhil Mullainathan. Center for Applied Artificial Intelligence, The University of Chicago Booth School of Business. June 2021. Jonathan Huang, Galal Galal, Mozziyar Etemadi and Mahesh Vaidyanathan. JMIR Medical Informatics, May 2022.

Evaluation and Mitigation of Racial Bias in Clinical Machine Learning Models: Scoping Review

Jonathan Huang, Galal Galal, Mozziyar Etemadi and Mahesh Vaidyanathan. JMIR Medical Informatics, May 2022.

Systemic Kidney Transplant Inequities for Black Individuals: Examining the Contribution of Racialized Kidney Function Estimating Equations

L. Ebony Boulware, Tanjala S. Purnell and Dinushika Mohottige. JAMA Network Open, January 2021

Hidden in Plain Sight – Reconsidering the Use of Race Correction in Clinical Algorithms

Darshali A. Vyas, Leo G. Eisenstein and David S. Jones. New England Journal of Medicine. August 2020

Challenging the Use of Race in the Vaginal Birth after Cesarian Section Calculator

Darshali A. Vyas, David S. Jones, Audra R. Meadows, Khady Diouf, Nawal M. Nour and Julianna Schantz-Dunn. Women’s Health Issues, April 2019.

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The role of artificial intelligence is growing in health care, yet many patients have no idea their information is coming into contact with algorithms as they move through doctor appointments and medical procedures. While AI brings advancements and benefits to medicine, it can also play a role in perpetuating racial bias, sometimes unbeknownst to the practitioners who depend on it. 

It’s important for journalists to take a nuanced approach to reporting about AI in order to unearth inequity, highlight positive contributions and tell patients’ individual stories in the context of the broader research.

For insight on how to cover the topic with nuance, The Journalist’s Resource spoke with Hilke Schellmann, an independent reporter who covers how AI influences our lives and a journalism professor at New York University, and Mona Sloane, a sociologist who studies AI ethics at New York University’s Center for Responsible AI. Schellmann and Sloane have worked together on crossover projects at NYU, although we spoke to them separately. This tip sheet is a companion piece to the research roundup “Artificial intelligence can fuel racial bias in health care, but can mitigate it, too.”

1. Explain jargon, and wade into complexity.

For beat journalists who regularly cover artificial intelligence, it can feel as though readers should understand the basics. But it’s better to assume audiences aren’t coming into every story with years of prior knowledge. Pausing in the middle of a feature or breaking news to briefly define terms is crucial to carrying readers through the narrative. Doing this is especially important for terms such as “artificial intelligence” that don’t have fixed definitions.

As noted in our research roundup on racial bias in health care algorithms, the term “artificial intelligence” refers to a constellation of computational tools that can comb through vast troves of data at rates far surpassing human ability, in a way that can streamline providers’ jobs. Some types of AI commonly found in health care already are:

• Machine learning AI, where a computer trains on datasets and “learns” to, for example, identify patients who would do well with a certain treatment
• Natural language processing AI, which can identify the human voice, and might transcribe a doctor’s clinical notes
• Rules-based AI, where computers train to act in a specific way if a particular data point shows up–these kinds of AI are commonly used in electronic medical records to perhaps flag a patient who has missed their last two appointments.

Sloane advises journalists to ask themselves the following questions as they report, and to include the answers in their final piece of journalism: Is [the AI you’re describing] a learning- or a rule-based system? Is it computer vision technology? Is it natural language processing? What are the intentions of the system and what social assumptions is it based on?

Another term journalists need to clarify in their work is ‘bias,’ according to Sloane. Statistical bias, for example, refers to a way of selectively analyzing data that may skew the story it tells, whereas social bias might refer to the ways in which perceptions or stereotypes can inform how we see other people. Bias is also not always the same as outright acts of discrimination, although it can very often to lead to them. Sloane says it’s important to be as specific as possible about all of this in your journalism. As journalists work to make these complex concepts accessible, it’s important not to water them down.

The public “and policymakers are dependent on learning about the complex intersection of AI and society by way of journalism and public scholarship, in order to meaningfully and democratically participate in the AI discourse,” says Sloane. “They need to understand complexity, not be distracted from it.”

2. Keep your reporting socially and historically contextualized.

Artificial intelligence may be an emerging field, but it intertwines with a world of deep-seated inequality. In the healthcare setting in particular, racism abounds. For instance, studies have shown health care professionals routinely downplay and under-treat the physical pain of Black patients. There’s also a lack of research on people of color, in various fields such as dermatology.

Journalists covering artificial intelligence should explain such tools within “the long and painful arc of racial discrimination in society and in healthcare specifically,” says Sloane. “This is particularly important to avoid complicity with a narrative that sees discrimination and oppression as purely a technical problem that can easily be ‘fixed.’”

3. Collaborate with researchers.

It’s crucial that journalists and academic researchers bring their relative strengths together to shed light on how algorithms can work to both identify racial bias in healthcare and also to perpetuate it. Schellmann sees these two groups of people as bringing unique strengths to the table that make for “a really mutually interesting collaboration.”

Researchers tend to do their work on much longer deadlines than journalists, and within academic institutions researchers often have access to larger amounts of data than many journalists. But academic work can remain siloed from public view due to esoteric language or paywalls. Journalists excel at making these ideas accessible, including human stories in the narrative, and bringing together lines of inquiry across different research institutions.

But Sloane  does caution that in these partnerships, it is important for journalists to give credit: While some investigative findings can indeed come from a journalist’s own discovery—for example, self-testing an algorithm or examining a company’s data—if an investigation really stands on the shoulders of years of someone else’s research, make sure that’s clear in the narrative. 

“Respectfully cultivate relationships with researchers and academics, rather than extract knowledge,” says Sloane. 

For more on that, see “9 Tips for Effective Collaborations Between Journalists and Academic Researchers.”

4. Place patient narratives at the center of journalistic storytelling.

In addition to using peer-reviewed research on racial bias in healthcare AI, or a journalist’s own original investigation into a company’s tool, it’s also important journalists include patient anecdotes.

“Journalists need to talk to people who are affected by AI systems, who get enrolled into them without necessarily consenting,” says Schellmann.

But getting the balance right between real stories and skewed outliers is important. “Journalism is about human stories, and these AI tools are used upon humans, so I think it’s really important to find people who have been affected by this,” says Schellmann. “What might be problematic [is] if we use one person’s data to understand that the AI tool works or not.”

Many patients are not aware that healthcare facilities or physicians have used algorithms on them in the first place, though, so it may be difficult to find such sources. But  their stories can help raise awareness for future patients about the types of AI that may be used on them, how to protect their data and what to look for in terms of racially biased outcomes.

Including patient perspectives may also be a way to push beyond the recurring framing that it’s simply biased data causing biased AI.

“There is much more to it,” says Sloane. “Intentions, optimization, various design decisions, assumptions, application, etc. Journalists need to put in more work to unpack how that happens in any given context, and they need to add human perspectives to their stories and talk to those affected.”

When you find a patient to speak with, make sure they fully consent to sharing their sensitive medical information and stories with you.

5. Stay skeptical.

When private companies debut new healthcare AI tools, their marketing tends to rely on validation studies that test the reliability of their data against an industry gold standard. Such studies can seem compelling on the surface, but Schellmann says it’s important for journalists to remain skeptical of them. Look at a tool’s accuracy, she advises. It should be 90% to100%. These numbers come from an internal dataset that a company tests a tool on, so “if the accuracy is very, very low on the dataset that a company built the algorithm on, that’s a huge red flag,” she says.

But even if the accuracy is high, that’s not a green flag, per se. Schellmann thinks it’s important for journalists to remember that these numbers still don’t reflect how healthcare algorithms will behave “in the wild.”

A shrewd journalist should also be grilling companies about the demographics represented in their training dataset. For example, is there one Black woman in a dataset that otherwise comprises white men?

“I think what’s important for journalists to also question is the idea of race that is used in healthcare in general,” adds Schellmann. Race is often used as a proxy for something else. The example she gives is using a hypothetical AI to predict patients best suited for vaginal births after cesarean sections (also known as VBACs). If the AI is trained on data that show women of color having higher maternal mortality rates, it may incorrectly categorize such a patient as a bad candidate for a VBAC, when in fact this specific   patient is a healthy candidate. Maternal mortality outcomes are the product of a complex web of social determinants of health—where someone lives, what they do for work, what their income bracket is, their level of community or family support, and many other factors—in which race can play a role; but race alone does not shoehorn a person into such outcomes.

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Although cancer survival rates have improved in the U.S. in recent decades, patients living in rural areas continued to have consistently lower survival rates for some of the most common types of cancer compared with those living in urban areas, according to a large national study that examines 40 years of data.

The study, published in May in JAMA Network Open, also examines rural-urban disparities by race and ethnicity for four types of cancer: breast, lung, prostate and colorectal cancer. It finds that Black patients in rural and urban areas had lower cancer survival rates compared with other races and ethnicities for all four cancers. Meanwhile, non-Hispanic white patients generally had the highest cancer survival rates in urban and rural areas.

“These findings punctuate the need for elevated health care resources and education for racially and ethnically minoritized groups, especially those in rural settings,” writes Marquita Lewis-Thames and her co-authors in “Racial and Ethnic Differences in Rural-Urban Trends in 5-Year Survival of Patients With Lung, Prostate, Breast, and Colorectal Cancers: 1975-2011 Surveillance, Epidemiology, and End Results (SEER).”

Cancer survival rates indicate the percentage of people who survive a certain type of cancer for a specific amount of time, according to the Mayo Clinic, a nonprofit academic medical center in the U.S. The five-year survival rate is most commonly used statistic used by doctors and researchers.

Previous research has shown that people in rural areas have a 2.7% increased risk of developing cancer and a 9.6% higher risk of dying from it. This study builds on previous findings that show rural-urban disparities in cancer survivorship.

The drivers of these disparities are upstream factors such as systemic and structural racism, segregation, poverty, lack of health insurance and reduced access to health care services, all of which can lead to delayed cancer diagnosis, worse outcomes — such as more cancer-related health complications — and increased risk of dying from cancer, the authors explain.

To be sure, overall rates of new cancers and cancer deaths have declined in the U.S. in recent decades among all racial and ethnic groups and among people who live in rural or urban areas. Also, overall five-year survival rates for most cancers have improved due to advancements in screening, treatment and quality of clinical care. The risk of death from cancer in the U.S. has decreased by 32% since 1991 and approximately 3.5 million cancer deaths have been averted as of 2019, according to the most recent cancer data.

But disparities remain.

The data

Researchers used the Surveillance, Epidemiology, and End Results, or SEER, which is a source of cancer statistics maintained by the National Cancer Institute, from 1975 to 2011. SEER collects cancer data from 20 cancer registries, capturing about 47.9% of the U.S. population. Races and ethnicities included in the data were Asian and Pacific Islander, Hispanic, non-Hispanic Black and non-Hispanic white. Cancer registries collect and store data on people with cancer and play an important role in cancer surveillance.

They analyzed data from 3,659,417 patients who had lung, breast, prostate or colorectal cancer and were diagnosed no later than 2011. They then followed their outcomes in SEER until 2016.

Patients were classified as living in rural or urban counties based on the 2013 Rural-Urban Continuum Codes, which classify metropolitan counties by the population size of their metro area, and nonmetropolitan counties by degree of urbanization and adjacency to a metro area, according to the U.S. Department of Agriculture’s Economic Research Services, which created the codes in 1975.

The median age of patients was 76; 4.6% were Asian; 6.5% Hispanic, 11% Black, and 77% were white.

A quick note on cancer trends in the U.S.: The most common cancers in the U.S. are breast, prostate, lung, colorectal, skin and bladder cancers, according to the American Cancer Society. Worldwide, the most common cancers are breast, lung, colorectal, prostate, skin and stomach cancers, according to the World Health Organization.

Even though white individuals have the highest rate of new cancer cases in the U.S., Black individuals have the highest death rate from cancer, according to the National Cancer Institute.

The overall five-year survival rate for breast cancer in the U.S. is 90%. It is 22% for lung cancer; 98% for prostate cancer; and 65% for colorectal cancer, according to the American Cancer Society.

The findings

Researchers find that overall, the five-year survival probabilities for lung, prostate, breast, and colorectal cancers among rural patients were consistently lower than those who lived in urban areas.

However, when looking at the 40-year period trends, the rural and urban five-year survival rates became equivalent for most cancer types in years approaching 2011, except for breast cancer.

Black patients in rural and urban areas had the lowest survival rates for the four cancer types, although their survival rates improved from 1975 to 2011.

For instance, the prostate cancer survival rate for Black patients in rural areas improved from 74% in 1975 to 95% in 2011. The prostate cancer survival rate for Black patients in urban areas improved from 81% to 96%. In comparison, the survival rate for white patients in rural areas was 96.5% in 2011 and in urban areas 96.9%. Asian and Pacific Islanders had a survival rate of 96.9% in rural areas and 96.7% in urban areas in 2011. And Hispanic patients’ survival rate in 2011 was 96.1% in rural areas and 96.2% in urban areas.

The study also finds that while urban-rural disparities in colorectal cancer survival rates narrowed within most racial and ethnic groups, it widened among Hispanic individuals.

The findings “highlight that the association between place of residence and survival after a cancer diagnosis is complex,” writes Dr. Zachary A. K. Frosch in an invited commentary in JAMA Network Open. “Therefore, a detailed understanding of the barriers to optimal care faced by rural patients, and how those barriers differ between populations residing in the same geographic location, is critical.”

Frosch lists several barriers to optimal cancer care in rural areas, including lack of access to local cancer screening, which can lead to delayed cancer diagnoses.

The disparity continues after diagnosis.

“Once diagnosed, rural patients also have reduced access to clinicians who provide cancer treatment,” Frosch writes. A 2019 study, “State of Physician and Pharmacist Oncology Workforce in the United States in 2019,” led by Ya-Chen Tina Shih, finds 12% of counties in the U.S. had no oncologists locally or in the adjacent counties.

“For those able to travel for treatment, greater travel requirements may also result in more frequent hospitalizations, higher out-of-pocket costs for patients, and reduced care continuity,” he writes, referencing the 2019 study, “Impact of Travel Time on Health Care Costs and Resource Use by Phase of Care for Older Patients With Cancer,” led by Dr. Gabrielle Rocque.

Potential solutions

In his commentary, Frosch points to efforts such as partnerships between urban and rural care sites and improving communication via telemedicine as some of the solutions toward closing the cancer disparity gap. A 2020 report published in JCO Oncology Practice lists several such approaches at the Ohio State University Comprehensive Cancer Center’s Center for Cancer Health Equity and the New Mexico Cancer Care Alliance.

Access to health insurance can also play a role.

A May 2022 study published in the Journal of the National Cancer Institute examines the potential impact of Medicaid expansion under the Affordable Care Act on the two-year cancer survival among newly-diagnosed patients. It finds that Medicaid expansion is associated with improved cancer survival, particularly among Black patients and in rural areas. The association was also strong for lung, pancreas, liver and colorectal cancers, which can be detected by screening.

The findings provide “further evidence for the importance of expanding Medicaid eligibility in all states, particularly considering the economic crisis and health-care disruptions caused by the COVID-19 pandemic,” the authors write. They add that the study highlights the role of Medicaid expansion in reducing health disparities.

Medicaid is the United States’ public health insurance program for people with low income. It covers one in five Americans, according to the Kaiser Family Foundation, a nonprofit health policy research group.

The authors of the JAMA Network Open study also call for more funding through National Cancer Institute grants for cancer control and management in rural areas. The number of funded grants solely focused on rural populations rather than rural-urban differences are also low, and policy reform that targets rural cancer control remains minimal, they add.

“Additional research, programming, financial resources, and policy changes are needed to comprehensively address rural-urban cancer disparities along the cancer continuum,” they write.

In June, the Centers for Disease Control and Prevention announced the first round of funding from a $1.1 billion investment into three national programs to prevent and control cancer as part of President Joe Biden’s Cancer Moonshot initiative.  

“This funding helps organizations work together to take action, address preventable health disparities, and close gaps in cancer care access, quality, and outcomes,” said Dr. Lisa Richardson, director of CDC’s Division of Cancer Prevention and Control, in a news release.

Additional studies

• “Association of Area-Level Socioeconomic Status and Non–Small Cell Lung Cancer Stage by Race/Ethnicity and Health Care–Level Factors: Analysis of the National Cancer Database.” Anjali Gupta; et. al. Cancer, June 2022.
• “Disparities in Access to Radiation Therapy by Race and Ethnicity in the United States With Focus on American Indian/Alaska Native People.” Solmaz Amiri; et al. Value in Health, May 2022.
• “Racial disparities in colon cancer survival: A propensity score matched analysis in the United States.” Arash Azin, Keegan Guidolin, Sami A. Chadi and Fayez A. Quereshy. Surgery, April 2022.
• “Cancer statistics for African American/Black People 2022.” Angela N. Giaquinto; et al. CA: A Cancer Journal for Clinicians, February 2022.
• “Cancer Statistics, 2022.” Rebecca L. Siegel, Kimberly D. Miller, Hannah E. Fuchs and Ahmedin Jemal. CA: A Cancer Journal for Clinicians, January 2022.
• “American Cancer Society’s report on the status of cancer disparities in the United States, 2021.” Dr. Farhad Islami; et al. CA: A Cancer Journal for Clinicians, December 2021.
• “Social determinants of health associated with poor outcome for rural patients following resected pancreatic cancer.” Quyen D. Chu, Mei-Chin Hsieh, John F. Gibbs and Xiao-Cheng Wu. Journal of Gastrointestinal Oncology, December 2021.
• “Cancer Statistics for the US Hispanic/Latino Population, 2021.” Kimberly D. Miller; et al. CA: A Cancer Journal for Clinicians, September 2021.
• “State of Physician and Pharmacist Oncology Workforce in the United States in 2019.” Ya-Chen Tina Shih, Bumyang Kim and Michael T. Halpern. JCO Oncology Practice. December 2020.
• “Head and Neck Cancer Survival Disparities by Race and Rural-Urban Context.” Jacob A. Clarke; et al. Cancer Epidemiology, Biomarkers & Prevention, October 2020.
• “Rural–urban residence and cancer survival in high-income countries: A systematic review.” Nina Afshar, Dallas R. English and Roger L. Milne. Cancer, April 2019.
• “Making the Case for Investment in Rural Cancer Control: An Analysis of Rural Cancer Incidence, Mortality, and Funding Trends.” Kelly D. Blake; et al. Cancer Epidemiology, Biomarkers & Prevention, July 2017.

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Editor’s note:

In “Vaccinated at the Ball: A True Story About Trusted Messengers,” Josh Neufeld uses the form of comics journalism to highlight a recent perspective article published in the “Opinions, Ideas & Practice” section of the American Journal of Public Health. The comic draws on the article itself along with additional sources — including recent interviews with several of the co-authors, Randi Beth Singer, Natasha Crooks, Rebecca Singer, Noel C. Green and Jahari Stamps.

Those five people are the main characters of the comic, which details an effort in Chicago last year to increase COVID-19 vaccination rates among Black and Latino members of the city’s LGBTQ community. The images of people attending the House balls are based largely on photos and videos of actual events, and the image of #JamOutSaveLives is based on a video that appeared on Twitter and Instagram.

The characters’ speech-bubble quotes come directly from their 2022 interviews with Neufeld or quotes from the AJPH commentary. The captions in rectangular boxes comprise Neufeld’s own narrative — except in cases when he uses quotation marks to denote a direct quotation. “I tried to let the voices of Randi, Natasha, Rebecca, Noel, and particularly Jahari guide the narrative,” Neufeld says. “I’m so grateful that they spoke to me about their editorial, and I hope that I captured their experiences honestly.”

Neufeld adds that he considers “Vaccinated at the Ball” to be “a perfect counterpart to a previous story of mine, published by The Journalist’s Resource back in November 2020, ‘A Tale of Two Pandemics.’ In fact, a few panels in this story were taken directly from that earlier piece.”

The panels and images in this piece that first appeared in “A Tale of Two Pandemics” are the image of mourners at a Chicago funeral; the panel representing the Tuskegee experiments, which is based on photos in the public record; the panel of J. Marion Sims’s experiments on enslaved Black women in the 1800s, which is based on a historical painting by Robert Thom; and the panels with quotes from Dr. Lisa Cooper, whom Neufeld interviewed in 2020.

Neufeld’s previous comics have covered a wide range of topics, including public health crises, academic research and journalism itself. He is best known for his book A.D.: New Orleans After the Deluge, which tells the true story of several New Orleans residents who lived through Hurricane Katrina. He is also the co-author of The Influencing Machine: Brooke Gladstone on the Media, an illustrated history of journalism, and numerous other works — including a comics journalism piece about social science research on consumer behavior.

“As I learned from nonfiction comics storytellers like Joe Sacco and Harvey Pekar, comics can often be used to create empathy and also to bring abstract concepts to life,” he says. “That’s why I so enjoyed the section of this story that deals with the discussion of ‘trauma-informed approaches’ and the ‘diffusion of innovation’ theory. My hope is that this piece will bring this story — and its lessons — to life in new and unexpected ways.”

Sources:

“Ballroom Icons and the Power to Promote COVID-19 Vaccination Among Black and Brown LGBTQ+ Individuals.” Randi Beth Singer, PhD;  Natasha Crooks, PhD; Rebecca Singer, PhD; Noel Green, BS; Jahari Stamps; Crystal Patil, PhD; and Alicia Matthews, PhD. American Journal of Public Health, Dec. 21, 2021.

“Black Chicagoans Aren’t Getting Vaccinated At The Same Rate As Others — And It’s More Than Just Distrust.” Maxwell Evans. Block Club Chicago, May 3, 2021.

“Memory and Medicine: A Historian’s Perspective on Commemorating Marion J. Sims.” Susan M. Reverby. Perspectives on History, Sept. 17, 2017.

“$1,000 Legendary Performance (Part 2) @ Paragon 10: Ten’s Across (10th Anniversary Ball) 2021.” YouTube video uploaded by Jay Garçon.

“#JamOutSaveLives.” Jahari Stamps and Ryan Ryuu. 2021.

“A Tale of Two Pandemics” by Josh Neufeld. The Journalist’s Resource, Nov. 16, 2020.

Related reading:

“Exploring Health and Wellbeing in the US House Ball Community: A Systematic Review.” Maria Olivas, Sean Bear, Abraham Johnson and Stacy Smallwood. Spotlight on Public Health Research, Sept. 20, 2019.

“Trauma-informed Care: What it is and Why it’s Important.” Monique Tello. Harvard Health Blog, Oct. 6, 2018.

“Diffusion of Innovation Theory.” June Kaminski. Canadian Journal of Nursing Informatics, June 19, 2011.

“Documenting Serious Issues with Comics Journalism: An Interview with Josh Neufeld.” Carmen Nobel. The Journalist’s Resource, Nov. 16, 2020.

The post Vaccinated at the ball: A true story about trusted messengers appeared first on The Journalist's Resource.

In January 2001, the office of the U.S. Surgeon General issued a report about mental health disparities affecting racial and ethnic minorities.

“Mental Health: Culture, Race, and Ethnicity” was a supplement to the Surgeon General’s 1999 report on mental health, and it found that people of color had less access to mental health services, were less likely to receive those services when needed, often received poorer quality of care and were underrepresented in mental health research.

It said that the prevalence of mental illnesses among racial and ethnic minorities was similar to prevalence among white people, but also pointed out that most epidemiological studies were community household surveys and excluded vulnerable people who are homeless, incarcerated or in residential treatment centers, shelters and hospitals, where minorities tend to be overrepresented.

The report found that people of color had a greater burden of disability from mental illness — more likely to suffer from prolonged, chronic, and severely debilitating depression that affect their daily life — compared with whites because they often received less care and poorer quality care.

And it listed several barriers that deter people of color from accessing treatment, including mistrust and fear of treatment, racism and discrimination and differences in language.

In the two decades since little has changed.

“I’m sorry to say — and I’ve given a number of talks about this during the pandemic — those disparities are still with us,” says Dr. Enrique Neblett, Jr., professor of health behavior and health education at University of Michigan School of Public Health, whose research focuses on the impact of racism on health.

Overall, the country has failed to make significant progress toward reducing disparities in mental health care, Neblett says. One of the main reasons is persistent structural racism in the U.S.

“If you think about food insecurity, if you think about housing insecurity, if you think about the underinsured and unemployment, poverty, all of those things are clearly linked in studies to mental health outcomes,” he says. “How is access going to improve if there isn’t a concentrated, sustained structural investment in communities to improve the access to high quality care?”

In addition to structural racism leading to inferior care, being the target of racist behavior is linked to negative health outcomes.

Dr. Rebecca Brendel, the incoming president of the American Psychiatric Association, calls it a double whammy: “You have more stress, leading one to suffer negative mental health effects and it is harder to actually seek that help” because of institutional and structural racism, she says.

Other drivers of disparities

Disparities in mental health care, and in health care in general, refer to racial or ethnic differences in access to care and quality of care. It’s a definition used by the Institute of Medicine’s landmark 2003 report “Unequal Treatment: Confronting Racial and Ethnic Disparities in Health Care.”

Dr. Alfiee Breland-Noble, a mental health services researcher and founder of Aakoma Project, a nonprofit that aims to bring mental health awareness to young people of color, breaks down these disparities into three levels: individual, provider and historical.

At the individual level, cultural stigma around mental health care can prevent people from seeking care. Some studies have found that mental illness stigma tends to be higher among racial and ethnic minorities. In addition, some racial and ethnic groups may also have a different understanding of mental illness than white people.

“While in white communities often the thinking is that mental illness is medical and genetic, in many communities of color, it’s seen as a failure to thrive or it’s a failure to pray or it’s a personal flaw, or it’s just something that if you change your behaviors, you can get back,” Breland-Noble says.

When it comes provider disparities, people of color have a harder time finding a provider in their neighborhoods. Mental health providers who don’t take health insurance also tend to avoid establishing offices areas where people can’t pay the full price of the visit out of pocket, which means a dearth of providers in disproportionately disadvantaged, lower income communities, Neblett says. According to 2019 data from Medicaid and CHIP Payment and Access Commission (MACPAC), 62% of psychiatrists accepted new patients with private insurance and Medicare, while 36% of them accepted new patients with Medicaid. In comparison, the overall rate of physicians accepting new Medicaid patients was 71%.

“The density of those high quality services is not the same across places and that pattern is driven by structural racism and residential segregation,” he adds. There are also disparities in treatment of mental illnesses, such as depression. For instance, with symptoms like anger, sadness, tearfulness and thoughts of death, young Black and Latino children are more likely to be diagnosed with conduct disorder or oppositional defiance disorder — while a white child with those symptoms will likely be diagnosed with depression, Breland-Noble says.

Some providers also have a perception that people of color aren’t going to take prescribed medications, so they don’t won’t offer it to them, “and that’s a disparity,” says Breland-Noble. “Because you’re not providing equitable care that is tied to what’s presenting in your office. You’re providing care based on your perception of what you think that patient is going to tolerate, sometimes without ever asking them.”

Meanwhile, there is a chronic shortage of providers of color in the U.S., in addition to the national shortage of mental health providers across the nation. As of 2019, 3% of more than 110,000 U.S. psychologists were Black, 7% were Hispanic. 4% Asian, 2% belonged to other races and ethnicities and 83% were white, according to the American Psychological Association. A 2020 study finds that in 2016 only 10% of 37,717 practicing psychiatrists were Black, Latino or Native American. “We must diversify, and we must train more diverse psychiatrists and other physicians,” says Brendel, who is also associate director of Center for Bioethics at Harvard Medical School.

People’s historical experiences with the mental health care system also plays a significant role in disparities, many times discouraging people of color from seeking care.

For instance, research has shown that women of color are less likely to seek care if they have postpartum depression compared with white women.

“Black women specifically are fearful of reporting symptoms of postpartum depression because they’re worried about their children being taken away from them,” says Breland-Noble.

Lack of diversity in mental health research is another issue. Racial and ethnic minorities continue to be underrepresented in clinical research. There’s also a need for more research into what treatments work best for communities of color, and more funding for researchers of color.

“We need a lot more work to establish treatments (medications and therapies) that are effective for racial and ethnic minority people,” says Neblett. “We want to make sure that the treatments that we think are effective, don’t cause further harm. And the only way to do that is to have people recruited and participate in the studies.”

Breland-Noble advocates for “practice-based evidence,” which refers to learning from people who are caring for patients and are engaged in communities, in order to build health practices based on what works.

Hope for the future

Despite lack of progress in recent decades, researchers are hopeful.

In March, President Biden announced a plan to address the nation’s mental health crisis. And more people are talking about mental health, a silver lining of the COVID-19 pandemic.

Breland-Noble is encouraged to see more organizations and initiatives like hers are focusing on helping people of colorand spreading ideas and practices that are helpful to different communities.

Her nonprofit is participating this week in the inaugural Mental Health Youth Action Forum in Washington, D.C., a collaboration between MTV Entertainment Group and the White House that aims to inform the development of creative mental health campaigns for at-risk communities.

“If you look over the arc of things, there have been periods of forward progress, and those periods of forward progress were often resisted,” says Neblett. “So, it’s a little bit of back and forth, back and forth. And we just have to keep pushing so that we can do what we can to promote health equity and improve the health of all Americans..”

Research roundup

Below is a collection of research to help you add data and context to your stories about disparities in mental health care. We’ve selected a wide range of studies to show the breadth of issues that arise from existing disparities. We’ve also included a few older studies because of their significance in the scope of mental health research on people of color. 

How Does Use of Mental Health Care Vary by Demographics and Health Insurance Coverage?
Nirmita Panchal; et al. Kaiser Family Foundation, March 2022

Quick summary: The report, by the nonprofit policy organization Kaiser Family Foundation, explores how the use of mental health care varied across various populations, including racial and ethnic groups, before the pandemic, using data from the 2019 National Health Interview Survey, which is an annual household survey conducted by the CDC’s National Center for Health Statistics. It finds among adults reporting moderate to severe symptoms of anxiety, depression, or both that mental health treatment rates were lowest among young adults, Black adults, men, and uninsured people. The report is a useful baseline for mental health disparities before the pandemic.

Highlight: Even though a similar percentage of white, Black and Hispanic adults reported moderate or severe symptoms of anxiety or depression, 53% of Black adults didn’t receive treatment, compared with 36% of white adults. Among Hispanic adults, 40% reported not receiving treatment. “Research suggests that structural inequities may contribute to disparities in use of mental health care, including lack of health insurance coverage and financial and logistical barriers to accessing care. Moreover, lack of a diverse mental health care workforce, the absence of culturally informed treatment options, and stereotypes and discrimination associated with poor mental health may also contribute to limited mental health treatment among Black adults,” the authors write.

Trends in Differences in Health Status and Health Care Access and Affordability by Race and Ethnicity in the United States, 1999-2018
Shiwani Mahajan; et al. JAMA, August 2021

Quick summary: The study analyzes National Health Interview Survey data from 1999 to 2018 to determine if the U.S. has made progress toward eliminating racial and ethnic disparities in physical and psychological health status and access. It finds that disparities persisted, although they improved for some groups. “The current study found that between 1999 and 2018, there had been no significant decrease in the percentage of people reporting poor or fair health across any racial and ethnic subgroup, and Black individuals consistently had the highest rates,” the authors write. There was no significant change in the difference in health status between Black and white individuals or between Latino/Hispanic and white individuals over the decades studied.

Highlight: Between 1999 and 2018, estimated rates of severe psychological distress significantly increased for Black, Latino/Hispanic and white individuals but there was no significant change for Asian individuals.

Trends in Suicide Rates by Race and Ethnicity in the United States
Rajeev Ramchand, Ph.D.; Joshua A. Gordon, M.D., Ph.D.; Jane L. Pearson, Ph.D. JAMA Network Open, May 2021

Quick summary: The study examines suicide rates among racial and ethnic minorities in the U.S. between 2018 and 2019. After adjusting for age, which is a statistical process that allows researchers to make fairer comparisons between different groups, suicide rates decreased for white and American Indian and Alaska Native individuals. Meanwhile, the rate for Black and Asian and Pacific Islander individuals increased between 2018 and 2019. Looking at a wider time range, the authors report that between 2014 and 2019, the suicide rate increased by 30% for Black individuals (from 5.7 to 7.4 per 100,000 individuals) and 16% for Asian or Pacific Islander individuals (from 6.1 to 7.1 per 100,000 individuals).

Highlight: “Although we will not be able to examine the association of COVID-19 with suicide rates for some time, recent reports suggest racial disparities in COVID-19 outcomes and suicide deaths in 1 state [Maryland] and the increase in Black and Asian or Pacific Islander youth suicide rates are worrisome,” the authors write. “Efforts are needed to mitigate suicide and its risk factors in population subgroups, which may include systemic and other factors that have placed increased stress on individuals who belong to racial/ethnic minority groups, particularly Black and Asian or Pacific Islander individuals.”

Coronavirus Trauma and African Americans’ Mental Health: Seizing Opportunities for Transformational Change
Lonnie R. Snowden and Jonathan M. Snowden. International Journal of Environmental Research and Public Health, April 2021

Quick summary: The commentary, by Lonnie Snowden, professor of health policy and management at U.C. Berkeley, and Jonathan Snowden, an epidemiologist and assistance professor at Oregon Health & Science University’s School of Public Health, offers several recommendations to help reduce mental health care disparities affecting African Americans. “As illness places more African Americans at risk for psychological distress, so do higher death rates burden more African Americans with grief,” the authors write. “The system must restructure to better reach out to African Americans and provide newly required, culturally appropriate mental health assistance to an already underserved African American population.”

Highlight: “African Americans’ risk of COVID-related PTSD is compounded by high rates of previous trauma due to personal and family adversity,” the authors write. “African Americans are more likely to be victims of or witness violence and to have friends or relatives who become victims of violence. They also have experienced more traumatic childhood events, and levels of current PTSD are higher than whites. Previous trauma predicts responding to a new disaster with PTSD.”

Double Jeopardy: COVID-19 and Behavioral Health Disparities for Black and Latino Communities in the U.S.
Substance Abuse and Mental Health Services Administration, 2020

Quick summary: This 5-page federal government report highlights the disproportionate impact of the COVID-19 pandemic on people of color and spotlights existing disparities in access to behavioral health care. For instance, in 2020, it shows that 69% of Black and 67% of Hispanic adults with a mental illness received no treatment, compared with the national average of 56.7%. It calls for strategies that prevent disruption of substance use treatment and recovery services, increase capacity in telehealth and support for individuals with substance use disorder and serious mental illnesses who have COVID-19.

Highlight: The reports offers a series of potential solutions including policy efforts, communication and public awareness, community partnerships and augmenting health-care workforce with peer navigators, coaches and recovery support services. Some examples are expanded and flexible coverage for telehealth visits, timely translation of public health guidance to different languages, and identifying trusted messengers who can disseminate critical COVID-19 information.

Mental Health Issues in Racial and Ethnic Minority Elderly
Nhi-Ha T. Trinh, Richard Bernard-Negron and Iqbal “Ike” Ahmed. Current Psychiatry Reports, September 2019

Quick summary: This study evaluates the impact of race, ethnicity and culture on the aging process, psychopathology, psychiatric care, psychiatric education and clinical research. It also provides recommendations for future practices to improve care for this underserved population.

Highlight: “As the prevalence of dementia and other mental health disorders continues to grow for racial and ethnic minority elders, more efforts in pursuing research in general, and particularly designing and evaluating culturally tailored interventions, are needed to allow for earlier diagnosis, treatment, and education for racial and ethnic minority elders and their families,” the authors write. “By striving to better care for racial and ethnic minority elders, one of the most marginalized populations, health care is improved for all.”

Eliminating Mental Health Disparities by 2020: Everyone’s Actions Matter
Regina Bussing, M.D., Faye A. Gary, Ed.D., M.S., R.N. Journal of the American Academy of Child & Adolescent Psychiatry, July 2012

Quick summary: The study addresses child and adolescent mental health disparities at the system level and patient level. The authors express concern with lack of patient diversity in research studies. “In an era that values evidence-based and personalized medicine, it is disconcerting that many psychiatric treatments lack generalizability to racial and ethnic minority populations.” The paper also highlights government initiatives aimed at eliminating disparities that were active when the study was published.

Highlight: “Youth from minority backgrounds who exhibit or are thought to exhibit behavioral or learning problems in school settings are less likely to receive high-quality mental health assessments and treatments,” the authors write. “Instead, they are more likely to be streamlined toward disciplinary responses, including detention and possible incarceration, with juvenile justice serving as the ‘de facto’ mental health treatment system for minority youth. Youth advocates are concerned that a ‘school-to-prison pipeline’ is fed by the increased use of the zero-tolerance discipline.”

Race and Unhealthy Behaviors: Chronic Stress, the HPA Axis, and Physical and Mental Health Disparities Over the Life Course
James S. Jackson, Ph.D., Katherine M. Knight, Ph.D., and Jane A. Rafferty. American Journal of Public Health, May 2010

Quick summary: This study finds people who live in chronically stressful environments often cope by engaging in unhealthy behaviors, such as smoking, drinking, drug use or overeating comfort foods, actions that may have protective mental health effects. “However, such unhealthy behaviors can combine with negative environmental conditions to eventually contribute to morbidity and mortality disparities,” between Black and white populations, the authors write. The hypothalamic-pituitary-adrenalcortical (HPA) axis is one of the body’s biological systems that’s activated by stress. The authors believe that unhealthy behaviors may either block the neurologic cascade or mask the physiological and psychological experiences of poor mental health by acting on the HPA axis and related biological systems.

Highlight: The study is led by the late James Jackson, a social psychologist, who “changed the way scholars examined Black life in the United States,” according to his obituary in The New York Times. He founded the Program for Research on Black Americans at the University of Michigan in 1976 and later launched the National Survey of Black Americans, which was completed in 1980, according to the Times.

Prevalence and Distribution of Major Depressive Disorder in African Americans, Caribbean Blacks, and Non-Hispanic Whites: Results from the National Survey of American Life
David R. Williams; et al. JAMA Psychiatry, March 2007

Quick summary: When depression (major depressive disorder) affects African American and Caribbean Black individuals, it is usually untreated and is more severe and disabling compared with that in non-Hispanic white individuals. The research was one of the first psychiatric epidemiologic studies to include a large national sample of Black adults of Caribbean origin.

Highlight: “These findings also emphasize the need for the treatment of blacks with [Major Depressive Disorder],” the authors write. “In the United States, 57% of adults with MDD receive treatment, but we found that most blacks with MDD, irrespective of ethnicity, do not receive treatment. Only 48% of African Americans and 22% of Caribbean blacks with severe symptoms received treatment.”

Racist Incident–Based Trauma
Thema Bryant-Davis and Carlota Ocampo. The Counseling Psychologist, July 2005

Quick summary: This paper distinguishes traumatic stress from nontraumatic stress and draws parallels between experiences of racist incidents and other traumatic experiences such as rape or domestic violence. It groups mental health effects of racism into three categories, including direct consequences of institutional racism resulting in unequal access to mental health care; racist experiences that can have a negative impact on mental health; and internalization of stereotypes that lower one’s positive self-evaluation and well-being.

Highlight: The study is led by Thema Bryant, the incoming president-elect of the American Psychological Association.

Additional resources

• Anxiety and Depression. Data from U.S. Census Bureau’s Household Pulse Survey, which began in April 2020 and is now in its third phase..
• How Does Use of Mental Health Care Vary by Demographics and Health Insurance Coverage? Nirmita Panchal; et al. Kaiser Family Foundation, March 2022.
• Racial/Ethnic Differences in Mental Health Service Use among Adults and Adolescents (2015-2019). Substance Abuse and Mental Health Services Administration, 2021.
• Behavioral Health Equity Report 2021. Substance Abuse and Mental Health Services Administration, 2021.
• Protecting Youth Mental Health. The U.S. Surgeon General’s Advisory, 2021.
• African American Youth Suicide: Report to Congress. U.S. Department of Health & Human Services, October 2020.
• Ring the Alarm The Crisis of Black Youth Suicide in America. A Report to Congress from The Congressional Black Caucus, December 2019.
• How Discrimination in Health Care Affects Older Americans, and What Health Systems and Providers Can Do. Michelle M. Doty; et al. The Commonwealth Fund, April 2022.
• Key Substance Use and Mental Health Indicators in the United States: Results from the 2020 National Survey on Drug Use and Health. SAMHSA, October 2021.
• Mental Health: A Report of the Surgeon General. Dr. David Satcher. Office of the Surgeon General, 1999.
• Words Matter: Reporting on Mental Health Conditions. American Psychiatric Association.
• “How bigotry created a black mental health crisis” Kylie M. Smith. The Washington Post, July 2019.
• “20 years ago, a landmark report spotlighted systemic racism in medicine. Why has so little changed?” Usha Lee McFarling. STAT, February 2022.

Experts

• Margarita Alegría, Ph.D., chief of the Disparities Research Unit at the Massachusetts General Hospital.
• Alfiee M. Breland-Noble, Ph.D., psychologist, scientist, author and founder of The AAKOMA Project, which also has a list of experts.
• Darrell Hudson, Ph.D., associate professor, Brown School at Washington University in St. Louis.
• Richard Lee, Ph.D., professor in the Department of Psychology at the University of Minnesota.
• Enrique W. Neblett, Jr., Ph.D., professor, Health Behavior & Health Education; Faculty Co-Lead for Diversity, Equity, and Inclusion; Associate director, Detroit Community-Academic Urban Research Center, University of Michigan.
• Wizdom A. Powell, Ph.D., M.P.H., Professor, director of UConn Health Disparities Institute.

The Journalist’s Resource is part of the Mental Health Parity Collaborative, a group of news organizations that are covering challenges and solutions to accessing mental health care in the U.S. The collaborators on this project include The Carter Center, The Center for Public Integrity, and newsrooms in Arizona, California, Georgia, Illinois, Pennsylvania and Texas.

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