As school officials debate whether to reopen this fall, physicians, teachers, and a prominent ethicist markedly disagreed on whether sending children back into the classroom is safe for their communities.
Some pediatricians are driving the push to reopen, while infectious disease specialists, family physicians, and teachers appear more wary, concerned that schools could become “new hotspots for the virus.”
At the heart of the debate are many unanswered questions, with arguably the most important being: How often are children infected, and how contagious are their infections?
The American Academy of Pediatrics (AAP) issued guidance in late June that strongly recommends children resume in-person classes in the fall.
While acknowledging that “many questions remain,” the AAP was confident in reopening given “the preponderance of evidence” that children “may be less likely to become infected and to spread infection,” as well as less likely to become symptomatic or develop severe illness when they do contract the virus.
However, NIAID Director Anthony Fauci, MD, has cautioned that there aren’t enough data to make a definitive statement about transmission in children. His colleague on the White House Coronavirus Task Force, Deborah Birx, MD, acknowledged on July 8 that children are the least tested population.
The AAP guidance does emphasize the importance of responding quickly to “new information,” but drives home its message that “all policy considerations for the coming school year should start with a goal of having students physically present in school.”
President Trump has made it clear he wants governors to reopen schools, even threatening to withhold funding from states that don’t force these reopenings.
His administration has leveraged the AAP’s own recommendations at every turn.
On July 8, during the Wednesday task force briefing, Education Secretary Betsy DeVos quoted from the academy’s guidance, stating that “keeping schools closed places children and adolescents at considerable risk of morbidity and in some cases mortality.”
At the same briefing, Vice President Mike Pence recommended that “every American” review the AAP’s guidance.
The White House has already shown its influence over these decisions. Following an angry Twitter storm from President Trump over CDC’s “very tough & expensive” recommendations for reopening schools, Pence said the agency would be releasing new guidance next week.
However, in an interview with Good Morning America on July 9, Redfield clarified that the basic CDC guidance would remain in place, but additional reference documents would be included.
The AAP’s statement makes clear it determined that the risk of viral transmission is the lesser danger compared with the social, emotional, and academic consequences of remaining home, and believes the evidence is on its side.
Danielle Dooley, MD, an AAP spokesperson and medical director of community affairs and population health at Children’s National Hospital in Washington, D.C., told MedPage Today that when schools closed in March, many experts assumed the virus would “behave like influenza” which spreads rapidly among children.
“But what we know now … three months later is that it doesn’t behave like influenza. Children do not appear to be ‘super-spreaders,'” Dooley said, noting that only “very limited cases” have shown children passing the virus to adults. A press representative was present during the phone interview with Dooley.
While “tens of thousands of children” of essential workers continued going to daycare centers and emergency childcare facilities throughout the pandemic, Dooley noted “there have not been cases of major outbreaks or spreading events in those areas.”
The YMCA and the New York City department of education cared for a total of 50,000 children during the pandemic, and both organizations told NPR in late June they had had no COVID-19 outbreaks.
The AAP also relied heavily on a May 15 policy brief from the Learning Policy Institute (whose funders include the Sandler Foundation and the Ford Foundation). The report summarized the experience of China, Denmark, Norway, and Singapore in reopening schools in late March or April and also includes the experience of Taiwan, which kept schools open nationally, while implementing mandatory and temporary closures in areas with high infection rates.
All five countries’ strategies were viewed by the policy brief’s authors as successful “to date” in avoiding the spread of COVID-19.
All instituted temperature checks and a range of physical distancing measures. Denmark and China reduced their class sizes and Norway instituted a maximum class size of 15 students for younger grades and 20 for older grades. The five countries also developed quarantine or school closure policies. Taiwan will suspend a particular class for 14 days if one case is discovered and will suspend school for 14 days if two or more cases are identified. In Denmark, anyone who’s sick is required to remain home for 48 hours.
The institute acknowledged that countries that reopened their schools “differ significantly from the experiences so far in the United States” with regard to their capacity “to test and track cases” and to “isolate individuals who have been exposed to infection,” all factors linked to their success in avoiding viral spread. The policy brief further stated that it “has not investigated the health implications of using any of these practices in the United States and does not endorse the safety or effectiveness of these practices or of any medical practices.”
Dooley also cited a systematic review in The Lancet, published in April, which cited data from the 2003 SARS outbreak in mainland China, Hong Kong, and Singapore indicating that closing schools “did not contribute to the control of the epidemic” while recent modelling studies of COVID-19 estimate that closing schools alone “would prevent only 2%-4% of deaths.”
AAP also cited an editorial published in The BMJ in May that leans on studies of widespread community testing in Iceland and South Korea which found children were “significantly underrepresented” in positive cases. The authors also cited a case study of a cluster in the French Alps in which one child with COVID-19 failed to transmit the virus to anyone “despite exposure to more than a hundred children in different schools and a ski resort.”
The AAP recommends that older children in elementary and secondary schools wear face coverings, social distance, and space their desks 3-6 feet apart when feasible. They also suggested that schools eliminate lockers, and transition to a block schedule for older students (where classes run longer each day, but terms are shorter) and when possible, rotate teachers for each new class rather than crowd hallways with students transferring place to place.
For children in pre-kindergarten, the academy did not suggest face-masking and physical distancing, believing both too difficult to implement in that age group. Instead it advocated separating kids into cohorts, using outdoor spaces whenever possible, and limiting unnecessary visitors.
The AAP recommended that students use alternatives to buses when possible, and assign seats in cohorts for those who do take the bus. The guidance also suggested one-way hallways, limiting the number of children on a playground at once, and potentially using classrooms or outdoor spaces for meals.
When asked about children as vectors of the virus, NIAID director Anthony Fauci, MD, said on Thursday during a press conference at the virtual International AIDS Conference that there’s “an assumption that we know for sure that children are poor transmitters when as a matter of fact, we don’t have enough data to make a definitive statement in that regard.”
He noted that there are “some suggestions that they are poor transmitters” and have less chance of an adverse outcome, but the research on transmission is ongoing.
“Right now, we are doing a natural history study on 6,000 families in the United States to determine definitively whether that suggestion … is actually based in actual scientific data,” Fauci said.
At the coronavirus task force briefing on Wednesday, Birx said current infection data are “skewed” to older adults, in part because initial testing protocols sought people with symptoms.
In recent weeks, case counts in children and teens 17 years of age and younger have been creeping up, nationally now at 5.9%, versus less than 2% as of April 2. In California, infection rates in this age group have more than doubled from 3.4% two months ago to 8.2% this week.
In a statement on Friday, the Infectious Diseases Society of America and the HIV Medicine Association suggested that school systems should be concerned about “instances in which children have fallen seriously ill … and in which children have died,” given that dynamics of the virus are unknown, and that teachers and other adults may be vulnerable to disease and death. The groups called for policies on symptom screening of students and staff as well as testing, and a recognition that a substantial proportion may be asymptomatic yet capable of transmitting.
On July 10, the AAP in coordination with the American Federation of Teachers (AFT), National Education Association (NEA) and AASA, The School Superintendents Association, issued a joint statement that looked like a reaction to statements from the White House calling for all schools to reopen.
While continuing to stress that “children learn best when physically present in the classroom” the new statement warned that public health agencies should base their recommendations on “evidence not politics.”
The four stakeholder groups also emphasized that local school leaders, public health experts, teachers and parents should drive decisions regarding “how and when to reopen schools, taking into account the spread of COVID-19 in their communities and the capacities of school districts to adapt safety protocols to make in-person learning safe and feasible.”
The groups also pointedly stated that “schools in areas with high levels of COVID-19 community spread should not be compelled to reopen against the judgment of local experts.”
Schools’ Role, Beyond Educating Kids
Dooley said evidence has shown that online learning is “not sufficient to meet children’s academic needs.”
“We’re already looking at children being now months behind in their school curricula,” she said.
At a June 10 hearing of the Senate Health, Education, Labor and Pensions (HELP) Committee, ranking member Patty Murray (D-Wash.) said she worried school closures could exacerbate inequities in education.
Researchers project that “Black children could lose over 10 months of learning, Latino students could lose over 9 months of learning, compared to white students who are projected to lose 6 months of learning,” she said.
She also cited the story of a mother in Yakima, Washington, whose children are sharing one iPhone for distance learning and who’s not certain she can continue to pay the phone bill.
Despite these challenges, Murray underscored the importance of school districts following the advice of public health officials and letting “science drive decision-making.”
Dimitri Christakis, MD, MPH, a pediatrician at Seattle Children’s and editor-in-chief of JAMA Pediatrics, agreed that distance learning for young children simply doesn’t work.
“No one thinks you can teach a kindergartner, a first-grader, or second-grader entirely over Zoom,” he said.
In cases where it has worked, a parent has been present and helping, but that isn’t sustainable in the long-term, particularly for parents who work outside of their homes, Christakis said.
“I think we have to confront the reality that for primary school kids, not having the schools open means that a sizeable percentage of children are not learning at all,” he said.
If a child isn’t reading at grade level in the third grade, he or she is 3 to 4 times less likely to graduate high school, Christakis said, and even less likely if the student comes from a low-income family.
“We’re going to see the impact of this years from now, in terms of high school graduation rates,” he predicted.
But Dooley emphasized that beyond academics, schools are “absolutely critical” for children’s social and emotional well-being, providing free or reduced price meals and health services including mental health programs.
“Schools are also critically important for socialization for children,” she said.
The concern over the emergence of mental health challenges among kids is one factor driving Dooley’s support for reopening.
In her practice, she’s seeing children and families “every single week” struggling with anxiety and depression, as a result of not being in school, not having contact with peers, and being socially isolated.
She’s also seeing challenges with food insecurity — 30 million children receive free and reduced price lunch in schools — and children who’ve gained weight because they aren’t involved in physical education classes, she said.
Howard Taras, MD, a pediatrician at the University of California San Diego Center for Community Health and the district physician for the San Diego Unified School District, also sees the importance of in-person learning for children.
“At every stage of development, children learn how to make friends, and learn how to deal with bullies, and they learn how to test their personalities, and try different ones on,” Taras told MedPage Today. “There’s just all these things going on that are also part of the normal, natural education of children aside from formal education of children.”
That in-person contact with supportive adults is also important, Taras said.
“Abuse is often detected by school personnel,” and while child abuse rates appear to have plummeted, it’s possible that abuse has actually increased but simply isn’t being reported, he said in an email.
If the AAP is full throttle on reopening, the American Academy of Family Physicians is perhaps in first gear.
Gary LeRoy, MD, president of the AAFP, told MedPage Today in an email that family physicians “understand the importance of in-person learning for children.”
“They also understand the potential health risks of sending children back to school during a national pandemic,” he added.
Looking ahead to the 2020 school year, LeRoy stressed the need to carefully monitor COVID-19 cases in individual cities and communities “to help signal if and when the risks of attending school begin to outweigh the benefits.”
Any guidelines on returning to school should be “evidence-based and flexible” because the science concerning the spread of COVID-19 is still evolving and we “cannot predict where the next outbreak will appear.”
Asked whether the AAP’s own guidance would apply in states where cases are currently climbing, Dooley explained that the academy “would hope that even in areas that are seeing a surge in cases, that school systems are still working towards an opening of schools in some format, in-person for children, because this is really vital for their survival.”
Kris Bryant, MD, president of the Pediatric Infectious Diseases Society (PIDS), said it’s important to consider all sides of this discussion.
PIDS currently does not have an official position on schools reopening; she emphasized that she was giving her personal opinion.
Bryant echoed many of the concerns mentioned by other pediatricians around the danger of isolation for children’s development and mental health and the “variable” benefits of distance learning depending on how well-resourced a family is or isn’t.
While she described data from Iceland, for instance, showing no transmission among children as “encouraging,” she remained skeptical.
“When everything is said and done. I’m not convinced though that we will see zero transmission from children to adults or zero transmission from child to child,” Bryant said.
She stressed the need to “look at the experience of other countries that have already gone down this path … [and to] try to identify models that are similar to our situation in the U.S.”
Arthur Caplan, PhD, an ethicist and population health expert at NYU Langone Health, called the AAP’s guidance “optimistic.”
“I think we’re reopening schools just like in some ways Texas, Arizona, Florida reopened restaurants, bars, and beaches,” Caplan said. “And I don’t think it’s going to work any better.”
“I’m terrified that what’s going to happen is, kids will go back, they won’t have had their shots for measles, or mumps,” he continued. “The flu will come and COVID will stay, and we will have one viral, toxic stew that will lead to many hospitalizations and deaths, not just from COVID but from these other infectious diseases.”
The CDC identified a year-over-year drop in orders for noninfluenza childhood vaccines and for measles-containing vaccines funded through the Vaccine for Children Program (VFC) from early January through mid-April 2020 compared with roughly the same period in 2019. (The program provides federally purchased vaccines to roughly half of all children 18 or younger in the U.S.)
What About Teachers?
Lily Eskelsen García, president of the National Education Association, told CNN’s Erin Burnett on Tuesday that she worries what school reopenings will mean for teachers.
“I had 39 sixth graders one year in my tiny little classroom with one window,” she said. “My classroom was a germ factory.”
Every year she knew one of her students would pass a cold onto her, García said, adding: “This is different. This is a virus that kills people.”
She acknowledged the argument by pediatricians that “‘we have to consider the mental health of children’ – of course we do – but they didn’t say at the expense of their physical health, and they didn’t say that you should do it under all circumstances. They said when it’s safe and where it’s safe.”
Gov. Greg Abbott (R-Texas) announced last week that public schools in his state will reopen this fall, but without a state-level requirement for testing or masking.
In response, Zeph Capo, president of the state’s AFT affiliate, called on the governor to consider students’ and teachers’ safety.
“We want to see kids return to school in some way, but prudence requires that there be a health and safety plan in place to reduce the chances of spreading the deadly virus,” Capo said in a statement, suggesting that the state require every school district to develop a plan for a safe reopening and submit it to the Texas Education Agency.
National AFT President Randi Weingarten said all schools need plans to ensure they don’t become the “new hot spots of transmission.”
“A no-mask, no-testing, no-worries attitude is exactly what will spread the virus,” Weingarten said.
Bryant said she tells parents asking about their children returning to school that there is no “one-size-fits-all” answer. It depends on the individual child’s health, the school’s protocols, and the level of transmission in the community, she said.
While it isn’t feasible to keep schools closed until the virus “goes away, because that’s likely to be a long time,” Bryant expects a rocky transition.
“[T]here will be cases,” she said. “We need a plan for what to do when cases occur.”
Parents are accustomed to sending a child with a mild illness or a cold to school, she noted, but in this context that decision could have serious consequences: from now on, “sick children need to stay home.”
The Experiment Continues
While a recent Gallup poll suggests 56% of parents of children in grades K-12 support their children returning to school full-time, that leaves another 44% who have qualms.
The Clark County, Indiana school district near Bryant is offering a three-tiered model: all in-person, a hybrid of in-person and online, and an entirely virtual option.
Bryant said the model recognizes that some children may be at risk for infection, have an underlying condition, or live with someone who’s immunocompromised and need that at-home option.
“[W]hen school systems have the capability to do that and transmission in the community suggests that bringing everybody back and resuming school as usual is not the best choice, it’s great,” Bryant said. Her colleagues are also currently developing a white paper focused specifically on schooling challenges for immunocompromised students.
The AAP’s guidelines also emphasize the importance of being flexible and practical, Dooley noted.
“We may have to revise plans as we go along, and as we’re learning what works best … both from our country, but also the experiences of other countries, ” Dooley said.
She also underscored the need for robust research to monitor the return to school and to identify best practices for “mitigating the spread and the risk of the virus.”
Still, Dooley emphasized the need to “start from that starting point of having children physically present in school and then working together between our health system, our public health department, [and] our education system on how we can do that as safely as possible.”
Originally published in MedPage Today.
By Shannon Firth, Washington Correspondent, and Cheryl Clark, Contributing Writer, MedPage Today, with contributions from Associate Editor Molly Walker
While so many businesses are shut down and people are staying at home, there’s one thing that will keep happening no matter what—women are still having babies and need access to safe maternity care during the COVID-19 pandemic.
In this dangerous and uncertain time, we wanted to know what’s going on in labor and delivery (L&D)—at least from one nurse’s perspective.
Morgan Michalowski, CNM, WHNP-BC, IBCLC, RN, who works at a large urban, educational and research medical facility in Chicago, Illinois took time to answer our questions regarding the state of L&D.
What are hospitals currently doing (or should do) to keep their maternity/L&D patients safe right now?
Hospital-wide we have a visitor restriction in place, but in L&D we allow one support person to be with the mother. We are universally testing anyone admitted to the hospital for COVID and, in L&D specifically, utilize rapid point-of-care testing. It takes just a few minutes to determine if she is COVID positive.
Hospital workers in L&D wear N95s with a surgical mask over it when in contact with any patient, even if they are not COVID positive.
How are things different in the midst of COVID-19? Is someone still allowed to be with the mother during labor/delivery?
The first two months, March and April, were a whirlwind. From creating new policies to providing high-quality care to figuring out how to promote bonding when NICU restrictions limit parental access, it was a steep learning curve for all.
We do allow one support person with a mother during labor, delivery, and postpartum. That visitor has to stay at the hospital with the mother through discharge. This seems to be working fine for the moment. We have had patients express interest in leaving the hospital as soon as possible, so they can be home with the rest of their family. Our team has been accommodating those requests. One of the biggest hurdles was figuring out how to support mothers if they’re separated from their baby due to a NICU admission. Most NICUs don’t allow any visitors, which is really tough on a lot of families. We coordinate video calls and check-ins so they feel connected to their baby, but it’s not the same.
What changes have occurred during COVID-19 that you think should be permanent either for the near future or forever?
One strategy in responding to COVID has been to expand the scope of practice for Nurse Practitioners and Midwives, which is having a positive and meaningful impact on care. I hope more states allow for this and continue this practice post-COVID.
Universal testing for COVID will become standard of care, in the same way that TB tests are required prior to starting school or a new job.
What’s happening with the newborns to keep them safe?
Healthy term newborns born to mothers without COVID room in with their mother until discharge. If mom and baby are low-risk, we try and discharge them within 24 hours. During that time, mom and her support person are required to wear masks.
If a mom is COVID positive, her baby goes to NICU until discharge.
Is everyone involved—mother, guest, child—getting tested?
We are currently only testing the mother, no one else. If mom is COVID positive, the NICU handles the care and testing of the baby.
Have the guidelines changed for when Mom and child are released?
No. While we try and discharge clients as quickly as possible, making sure they’re safe with adequate follow-up care is of the utmost importance. If a mom and baby are low-risk with a vaginal delivery, we discharge around 24 hours. If she’s low-risk, but had a c-section, discharge is around 72 hours.
Regarding post-natal care: are moms/newborns getting home nurse visits if
necessary? Is any other treatment happening or have some things moved to
Most postpartum visits can be handled through telehealth. We do see them in person for the six-week postpartum visit. We do not send anyone to the house.
Is there any other information that is important for our readers to know?
I think it’s important for readers to know that hospital workers are doing their very best to keep you, your loved ones, and themselves safe. Some of the restrictions—and the implication those restrictions have on the laboring mother—might not make sense or feel supportive. Every woman deserves to give birth with support and care in a safe environment. We are doing our best to make sure she gets all three.
average American child’s diet improved considerably from 1999 to
2016, with less soda and more fruits and vegetables, though unhealthy
diets remained the rule rather than the exception, researchers
of National Health and Nutrition Examination Survey (NHANES) data on
more than 30,000 young people over the 18-year span indicated that
the proportion with poor diets declined from 76.8% to 56.1%
according to Junxiu Liu, PhD, of Tufts University in Boston, and
shown in their study online in JAMA,
the proportion of youth with an intermediate dietary score increased
significantly during that time period, from 23.2% to 43.7% (P<0.001).
The percentage of young people with an ideal dietary score, however,
remained low, increasing from just 0.07% to 0.25% (P=0.03),
Liu’s team said.
of sugar-sweetened beverages decreased from a mean of two servings a
day to just one (difference -1.0, 95% CI -1.2 to -0.78), and added
sugar consumption decreased from 106 g to 71.4 g a day (difference
-34.4, 95% CI -40.8 to -28.1; P<0.001
consumption of whole grains significantly increased from 0.46 to 0.95
servings per day (difference +0.50, 95% CI 0.40-0.59), and
consumption of total fruits and vegetables increased from 1.62 to
1.81 daily servings (difference +0.19, 95% CI 0.06-0.32; P<0.001
for both), the study found.
1999 to 2016, overall dietary quality improved among U.S. youth,
associated with increased consumption of fruits and vegetables
(especially whole fruits) and whole grains, with additional increases
in total dairy, total protein foods, seafood, and plant proteins, and
decreased consumption of sugar-sweetened beverages and added sugar,”
Liu and colleagues wrote.
diets did not improve in one important area, however: sodium
consumption increased from a mean of 3,166 mg to 3,326 mg per day
far exceeding the 2019 National Academies of Sciences, Engineering,
and Medicine dietary reference intake of 2,300 mg per day.
increase “may relate to steadily increasing consumption of
processed foods and food prepared away from home,” the
researchers speculated. “These findings support the need for
reactivating the currently suspended long-term U.S. Food and Drug
Administration voluntary sodium targets and timelines for reducing
sodium in packaged foods and restaurant foods.”
Asked for her perspective, Lauri Wright, PhD, of the University of North Florida in Jacksonville, who was not involved with the study, said: “I believe this study is good news, showing improvements in youth’s dietary patterns. There might be many things at play here. One might be the impact of the changes in the school lunch program in 2012 (with many changes occurring prior). The reformed school lunches were much higher in fruit and vegetables, lean dairy, nuts, and whole grains, while lower in fat and sodium.”
addition, she told MedPage
email, there has been more education directed at kids and parents
about eating healthier. For example, she said, programs such as Let’s
improved the amount of positive nutrition messaging.
I feel there are many more ‘healthy’ products out there for kids and
parents to choose from,” Wright said. “Water and low-fat
dairy have become the norm over the once popular sugar-sweetened
beverages. Though the study shows we still have a ways to go in
improving youth’s eating patterns, it does show the impact policy and
education can have.”
the study, Liu and colleagues analyzed data across nine NHANES
cycles, from 1999-2000 through 2015-2016. The study included young
people ages 2 to 19 who had completed at least one valid 24-hour
dietary recall. A total of 31,420 youth were included. Their mean age
was 10.6, and 49% were female. Respondents reported all food and
beverages consumed during the past 24 hours, midnight to midnight.
For younger children, proxy-assisted interviews were conducted.
quality was determined by the 50-point American Heart Association
(AHA) 2020 continuous diet score. Poor diet was defined as a score of
less than 20, an intermediate diet was 20 to 39.9, and an ideal diet
was 40 or higher. The researchers also assessed youth diets with the
Eating Index 2015,
and the results were similar.
study findings included the following:
fruit intake increased from 0.46 to 0.68 daily servings, while 100%
fruit juice intake decreased from 0.63 to 0.46 servings (P<0.001
red meat consumption decreased from 0.35 to 0.31 daily servings
while processed meat consumption remained stable
consumption decreased from 55.4% to 51.9% of total energy intake
fat intake increased from 33.2% to 34.5% of energy, and dietary
cholesterol increased from 218 to 254 mg per day (P<0.001
intake increased from a mean of 12.4 mg to 15.6 mg per day (P<0.001)
diets tended to worsen as children got older, reflecting the greater
amount of unhealthy choices available to older children. as well as
the increased freedom to choose them, Liu and colleagues said. For
example, in 2016 the estimated proportion of children ages 2-5 having
a poor diet was 39.8%. That percentage rose to 52.5% for children
ages 6-11 and to 66.6% for those ages 12-19.
of the study, the researchers said, included the inaccuracies
associated with self-reported dietary recall, as well as the
cross-sectional nature of the analysis, which did not allow for
evaluating dietary changes among individuals, only of national
study was supported by the National Institutes of Health and the
American Heart Association.
reported no conflicts of interest; co-authors disclosed relationships
with the National Dairy Council, PepsiCo, General Mills, and other
companies and organizations.
reported no conflicts of interest.
J, et al “Trends in diet quality among youth in the United
States, 1999-2016” JAMA 2020; 323(12): 1161-1174.
By Jeff Minerd, contributing editor, MedPage Today
Being a primary caregiver for a family member who lives in a different city
or state can feel like a full-time job, complete with its own set of stressors and related emotions.
“I think caregivers can be disappointed at times,” said Vicki Williford, a
chronic care nurse in Greensboro, North Carolina. “The home health nurse comes
and goes, and [the caregiver] still has another 23 hours to go.”
That’s 23 more hours to make sure the care recipient has taken medication,
avoided falls, eaten healthy meals, and made it to the bathroom in time — all
of which have to be supervised remotely by long-distance caregivers.
The need for non-clinical family members to provide care to aging loved ones
will likely continue to rise, due to a growing population of seniors and the shortage of health care providers in America. The
burden of caregiving may be further complicated by distance; a 2015 study
from the National Alliance for Caregiving found roughly 25% of caregivers live 20 minutes or more from the
recipient’s home (PDF, 1.8 MB).
What unique challenges do long-distance caregivers face, and how can a relationship with a health care team help overcome these challenges?
The Challenges of Caring from Afar
Nearly 44 million Americans provide unpaid care for a family
member. Of these Americans, between 5 million and 7 million are doing so from a distance
of one hour or more, according to a report from the Journal of
Gerontological Social Work.
All caregivers, regardless of
geographic proximity, are met with tasks that challenge emotions and
resilience, as they work to provide the best possible quality of life for a
loved one in need of support. They may have difficulty accessing clinical
training, balancing caregiving with a full-time job and personal life, and
managing the length and scope of caregiving.
Those supporting a family member
from a distance may experience added stress from coordinating logistics
remotely, without the affirmations of face-to-face interactions from a health
care team and their loved one.
Challenges unique to long-distance
- Traveling to and from the care recipient’s home
- Using technology to stay in touch
- Limited in-person communication with the care recipient
- Building provider relationships from afar
- Coordinating legal and financial concerns remotely
- Planning visits for other family members
- Keeping all parties up-to-date
- Wavering confidence about choices made for the care recipient
Digital Tools for Long-Distance Caregivers
Some caregivers may find help through digital tools that
make it easier to check in on a care recipient, which can include:
Mobile Apps – For face-to-face communication
Smart Devices — to adjust home temperature or door locks
Wearable Devices — to transmit vitals or call 911 in case of an emergency
Home Cameras — to monitor activity and visitors; for keeping track of medication schedules and deliveries; providing alerts of home break-ins
Keep in mind, not all technology seems user-friendly at first, so it’s important to check in with all parties — including a health care provider — about the level of comfort using new tools.
Being Part of the Health Care Team
Many care recipients have a team of providers, such as nurses, managing
multiple aspects of their treatment. Caregivers can certainly be a part of that
team, even from a distance. That team can also offer support for the caregiver.
“All the research suggests that we do better with adversity by having people
who are in our corner,” said Dr. Barry J. Jacobs, clinical psychologist, family
therapist, and author of The
Emotional Survival Guide for Caregivers.
“We don’t take over people’s lives,” he said of caregivers. “We work with them to provide support to enhance their lives to be more functional and help them live more the way they want to live.” Both the caregiver and provider need to understand the strains that each party is experiencing, which comes from clear and consistent communication. There are several ways family members can demonstrate to providers they want to be an active participant in a loved one’s care.
Building a Relationship with a Provider Remotely
- Identify a member of the family who has the capacity and availability to be granted power of attorney for medical decision-making and communication with the primary provider.
- Establish the need for regular check-ins and preferred modes of communication.
- Attend appointments when possible. If it’s not possible to be there in-person, try dialing in, or follow up with a phone call to the provider and care recipient.
- Conduct background checks of aides who are providing in-person care.
- Keep notes of changes in health or questions about the care recipient’s needs.
- Make a list of medications and other treatments in order to support medication adherence and monitor changes in therapies.
- Understand that a treatment plan will evolve as the care recipient’s condition changes, and be open to that change.
Williford said it’s common for
families to lack consensus on a treatment plan for a patient with an unexpected
hospitalization, which can make a provider’s job much more difficult.
“Families come in from all these
different states, out of town, and then they’re now faced with: ‘What do we do
with Mom?’” she said. “They’re trying to decide, and yet the mom’s saying to
me, ‘No one asked me what I wanted.’”
Having these conversations as a group can help the care recipient feel that they have agency over their treatment plan and keep everyone on the same page — regardless of what time zone they’re in.
A Taste of One’s Own Medicine
Supporting a loved one from afar involves complicated responsibilities and
constant communication that can prove taxing. It’s common for long-distance
caregivers — especially those with less support — to feel emotionally burned out or exhausted. Being far away from
the care recipient can increase anxiety about a loved one’s wellbeing, and may
be compounded by stress of periodic traveling or lack of sleep for providing
care across different time zones.
Without proper self-care, caregivers may experience caregiver strain, or a feeling of burnout that leaves
individuals unable to perform daily tasks or cope with feelings of anxiety.
“You know you’re experiencing burnout as a caregiver if you’re waking up in the morning with a sense of dread,” said Jacobs.
How to Manage Burnout as a Long-Distance Caregiver
- Set a cadence for phone calls.
- Make time to self-reflect each day.
- Take an inventory of your emotions.
- Accept help when it’s offered; ask for help when it’s not.
- Utilize a care team on the ground to perform in-person tasks.
- Take notes during visits so there’s less to memorize.
Drawing boundaries is one thing;
adhering to them is another. Caregivers have to carve out time to care for
themselves and get the help they need as well. Jacobs said he uses a marathon
as a metaphor for caregiving.
People “need to see this as a long, arduous course for which they need to really take care of themselves along the way,” he said.
“They run past a water station at
mile five and people are waving water bottles at them,” Jacobs said. “That kind
of self-replenishment on a regular basis develops some sort of emotional
Even when distance is not a factor, caregivers are still at high risk of being overwhelmed. In fact, boundaries can be extremely difficult for spousal caregivers in particular, who feel a heightened sense of obligation for their loved one’s well-being. Spousal caregivers are at increased risk for burnout. Many of them — almost one in five — are outlived by their husband or wife, according to a 2018 study published in the journal Alzheimer’s & Dementia. Accepting an offer of assistance, even when it doesn’t seem crucial at the time, can help caretakers sustain the energy and will needed to provide the best quality care, while still finding time to rest and enjoy life with their loved ones.
Resources for Long-Distance Caregivers
Refer to the organizations below for
further reading and resources on how to provide high-quality care for a loved
one, from afar.
Citation for this content: [email protected], the online DNP program from the Simmons School of Nursing
The MammaCare Foundation recently issued a statement saying that according to recent studies, most breast cancers are found by hand. Mark Kane Goldstein, PhD, a MammaCare Foundation senior scientist stated, “A palpable lump, detected by hand is the most common symptom of breast cancer. Although mammograms—x-rays of the breast—can be useful, their images are masked by breast density in nearly 50% of women. Physical examination, however, is unaffected by density.”
Goldstein took time to answer questions for us about MammaCare and the foundation’s mission to help train every hand that examines a woman, including her own.
Why was the MammaCare Foundation established?
Our research on early breast cancer detection began at the University of Florida and Malcom Randall VA Medical Center because mortality from late stage breast cancer was an epidemic that continues to this day. We reported in a series of studies supported by the National Cancer Institute that properly trained hands will reliably detect small early, 3mm, pea-sized breast cancers (suspicious palpable tumors) without increasing false positive detections. Our original intention was simply to publish and promulgate the evidence and standards knowing they would enable clinicians and women to detect small early cancers.
We assumed, naively, that the training procedure would be
integrated into practice because it was an easily teachable skill that could
have a meaningful positive impact on women’s morbidity and mortality from
breast cancer without the dangers and expense or radiation. Sadly, resistance
from the imaging and radiological industries, and surprisingly from public and
private women’s health care agencies as well as U.S. Government health agencies
impeded training progress for a number of years as data accumulated.
Currently, breast cancers first detected continue to
remain 5 to 10 times larger and at a later stage than necessary. So, in
response, and with support from scientific agencies, the original research team
formed MammaCare to make the skills and standard for breast exam competency
What is MammaCare’s mission?
MammaCare’s mission is to train every hand that examines a woman for breast cancer. When the team of scientists, physicians, and biomaterial engineers began investigating the capability of fingers to detect breast cancers at the University of Florida, we were surprised that there were no prior evidence-based standards — no published research on the subject existed. We also learned that most women received clinical exams that were random or deficient, incapable of palpating small, suspicious tumors. We were puzzled by opinion and conclusions in the medical literature that the tactile sense was limited to feeling large, late-stage lesions. The only clinical papers published at the time reported that breast cancers discovered by hand and were late stage, large, 3-3.5 centimeters (about the size of a ping pong ball).
Our data from experiments found that with a brief training session using tactually accurate breast models, all hands were able to reliably detect 3-millimeter tumors, 10 times smaller than reported without increasing false positive detections. It was clear that breast cancer detection would be the province of the growing imaging, radiological industry. So, we created MammaCare to assure that a standard for a universal, safe, cost-effective standard of physical examination of the breast would be available.
Fingers feel and read sub-millimeter Braille dots
with absolute accuracy.
Many of the reports and studies on MammaCare are here.
Most women—and probably most nurses, female or male—believe that mammograms are the best way to find lumps. What does the MammaCare way offer that regular self-breast exams don’t?
Mammograms and increasing use of radiological imaging are widely available and most often used. It is puzzling, however, to note the evidence that indicates these technologies are not the most likely way breast cancer is first found. Moreover, numerous landmark studies by colleagues such as Joanne Elmore point out in a series of studies that mammography is only as good as the training and experience of the radiologist who reads them with his eyes. The same is true of untrained and trained hands with an important exception — the exam is free of ionizing radiation — an increasing concern — and mammograms often miss palpable tumors. Finally, between 40 and 50% of all women have dense breast tissue that clouds mammograms making interpretation difficult or impossible.
MammaCare training is now being installed in colleges of nursing and medicine providing breast exam skills and standards of practice for thousands of student nurses and physicians across the U.S. and elsewhere as indicated on the student login page.
What should nurses know about MammaCare?
That MammaCare has online and live training and certification programs, recognized continuing education courses and credits, and that new certification courses are conducted via live teletraining at the clinicians’ facility. There is a map on the front page of mammacare.org that should provide access to MammaCare certified nurses and their organizations.
Many of the colleges of nursing (and medicine) in the competency network are employing a new breast exam simulator that teaches and measures exam performance (the MammaCare Simulator Trainer) that was funded in part by the National Science Foundation.
In addition to improved detection of suspicious breast tumors, the MammaCare training protocol reduces false positive detections on clinical screening exams that are performed on well women screening.