Sara Francis, PhD, has been invaluable to Erin and Ron Taylor as they navigate parenting Levi, 7, and Carolina, 4. Both children have cystic fibrosis (CF), a disease affecting the respiratory, endocrine, reproductive and digestive systems.
A psychologist who sees patients and families with CF and other acute and chronic diseases at Monroe Carell Jr. Children’s Hospital at Vanderbilt, Francis has helped the Taylors ease the stress of having two children who need hours of breathing treatments and physical therapy each day, navigating them through a pandemic and patiently listening anytime Levi, 7, wants to talk about dinosaurs, rocks, the Tennessee Titans or his feelings.
“The fact that there’s someone immediately available to talk not only to Levi, but to us about caregiver stress and how the disease affects our children as they grow up, has been a huge asset to the team,” said Erin. “I deal with anxiety in general, but being a caregiver mom is really stressful. There is a lot to fit in every day with CF treatments and medication, in addition to the normal family and kid stuff — baths, dinner, homework and activities. On top of the logistical stresses, I carry around a lot of worry about test results and disease progression. Sara’s helped Levi, and she’s helped us.”
The CF clinic is just one of several clinics at Children’s Hospital with psychologists on the team of health care professionals who take care of children with chronic diseases who are at a higher risk of depression and anxiety.
Sarah Jaser, PhD, associate professor of Pediatrics, is the director of the new Division of Pediatric Psychology within the Department of Pediatrics at Children’s Hospital to address the rising needs for psychology services for children with acute and chronic medical conditions.
The division, which launched July 1, 2021, includes eight pediatric psychologists and researchers working across a variety of clinical settings, including diabetes, oncology, inpatient hospital services, CF, cardiology, gastroenterology (GI) and the transplant team. The psychology team also works closely with colleagues in the Division of Developmental Medicine and the Department of Psychiatry to align and enhance services for young patients.
“It’s important to provide more multidisciplinary care for our patients. This puts the psychosocial piece front and center,” Jaser said, adding that psychology services for pediatric patients at Children’s Hospital have existed for some time, but are now under one umbrella.
“The new division gives us a home where we can support and share resources and come together administratively to determine how to best serve our patients,” said Jaser, who holds the Dr. William R. Long Directorship in Pediatric Psychology.
Mental Health State of Emergency
In October 2021, the American Academy of Pediatrics, the American Academy of Child and Adolescent Psychiatry and the Children’s Hospital Association, together representing more than 77,000 physician members and more than 200 children’s hospitals, declared a national state of emergency in child and adolescent mental health and called on policymakers to join them.
The statement said that the COVID-19 pandemic has exacerbated the mental health challenges faced by youth as they deal with isolation, ongoing uncertainty, fear and grief.
Meg Rush, MD, MMHC, President of Children’s Hospital, testified before U.S. Congress in September 2021 about the impact of COVID-19 on the physical and mental health of children. “There is a parallel behavioral health epidemic,” she said, adding that the number of children in the hospital for behavioral health often surpasses the number of children in the hospital for COVID-19.
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“Yesterday, there were 34 children admitted for behavioral health crisis in my hospital,” Rush testified, which is about the number of children who would fill an entire inpatient floor at Children’s Hospital.
According to the Centers for Disease Control and Prevention (CDC), 7.1% of children ages 3-17 (about 4.4 million) have diagnosed anxiety and 3.2% in that same age group (about 1.9 million) have diagnosed depression. Those diagnosed with anxiety and depression have increased over time, according to the CDC.
Jaser said it’s hard to know if the incidence is on the rise or it’s being talked about and reported more with increased screening efforts.
“There are many hypotheses about why — one being increased social media use, but there’s also increased awareness and increased acceptance of talking about mental health issues. There might be kids who in years past have experienced these issues, but not necessarily brought them up or talked about them. So, some of those higher rates are reflecting what was already there.”
Chronic Illness Takes its Toll
Children who have chronic illnesses are more likely to develop a mental health condition, according to the National Institute of Mental Health (NIMH), part of the National Institutes of Health. They are also at a greater risk of becoming adults with depression or anxiety, according to a study published in the Journal of Child Psychology and Psychiatry.
It can also take a toll on the mental health of parents and siblings, the NIMH says.
Francis, assistant professor of Pediatrics, works with the entire family in the multidisciplinary GI, CF and spina bifida clinics, as well as children with general behavior disorders and those with anxiety, attention deficit hyperactivity disorder and autism seen at University Pediatrics at Vanderbilt Health One Hundred Oaks. She has a full plate.
In the GI clinic, Francis educates the family about the mind/gut connection. The brain has a direct effect on the stomach and intestines.
“I’m an educator and a consultant,” Francis said. “Often, it’s a one-time consultation, and I give them as much information as I can about pain science. We’re figuring out ways in the biological/psychological/social approach to pain and wellness in which we might be able to tweak a coping skill to take the edge off of pain, nausea, vomiting or bowel issues. Or I might be educating about how stress, anxiety and depression are very much related to their symptom presentation whether they know it or not.”
In the CF clinic, she meets with children and their parents every Thursday morning along with other members of the multidisciplinary team.
She teaches children coping skills — enabling them to become more compliant with treatments or medications and helping them figure out a way to explain the disease to classmates or what to say to a friend who’s invited them to a sleepover. She also talks to parents in the clinic and often checks in routinely with them between visits. “It’s a lot for parents to handle,” she said.
Francis says working with each patient population is different.
“I often get these big ‘Aha!’ moments with kids with GI issues and their parents. They’ve often never heard of the mind/body connection — about how their nervous system and their pain receptors are related to their chronic illness and how their mental health is pivotal to all of it,” she said. “And I think I get the biggest movement with parents in the CF clinic, supporting them, normalizing what they’re doing and helping them take small steps. It’s a little bit being a friend and a teammate.”
Children with CF produce thicker mucus, which can lead to respiratory issues, and many are unable to effectively digest food, particularly fats. They face about three to four hours of breathing treatments and chest physical therapy a day, and they must be compliant with medications to help them absorb their food and gain weight.
Levi and Carolina Taylor are doing well on their current therapies. They are both funny, outgoing, fearless children who are also very strong-willed, Erin said.
Francis, as their team psychologist, has been immensely helpful in keeping their family unit strong and functioning, Erin said. Levi spent the 2020 school year at home during the pandemic, doing virtual school. Both parents have full-time, demanding jobs, so it was a struggle for the entire family.
“Just having her to talk to my son about his feelings…. there are a lot of things he will definitely open up to her about. He just loves talking to her, but she will be able to get in some questions about how he might be feeling about things like having to stay at home during the pandemic. She can get a baseline on his feelings, and if we see a spike in his behavior, she can talk to him and try to figure out what might be going on.”
Support for Cancer Patients
Children, adolescents and teens with cancer also benefit greatly from having a psychologist on their team.
Michelle Reising, PhD, and Shari Neul, PhD, both assistant professors of Clinical Pediatrics in the Division of Pediatric Psychology, are well integrated into the team of professionals working with cancer patients from the time of diagnoses and throughout their cancer journeys.
“Mental health is just as important as physical health,” Neul said. “Our goal is first and foremost the patient and their caregiver; to normalize and validate that what they’re going through can be very difficult, and at the same time we try to build in hope and a sense of purpose to all of this — to help with acceptance and take the perspective that this is just another life journey. It’s a different one, and it’s tough, but we’re here to support them.”
Reising emphasized a cancer diagnosis ripples through the entire family, disrupting normal life.
“And that’s before you even get to all of the things about treatment that are really stressful,” she said. “I give parents and siblings permission to find the experience stressful and challenging. I think sometimes there’s the perception that only the patient can be having a hard time, but that’s just not the reality.”
There’s a culture in oncology about being brave and being a survivor and a fighter, a warrior and a hero. That can be empowering for patients, but it can also put a lot of pressure on children and young adults, Reising said.
“We try to help the families think about that in a broader way, that sometimes the braver thing to do is to let people know when you’re struggling and ask for help. That can be very brave.”
It’s also important to acknowledge that teens with cancer are still just teens, and often what’s causing their anxiety is not just having cancer.
“A lot of times you get a teenager alone, they’re not worried about their chemo. They’re worried that they got left off a text chain or their girlfriend broke up with them. Sometimes the big win is just being there for them,” Reising said.
And sometimes there’s mutual pretense — the teen is struggling, but doesn’t want to say so in front of their parents, and vice versa. “So, they’re grieving separately. Sometimes it’s just helping families cope together.”
Neul emphasizes that having cancer doesn’t need to be “all doom and gloom.” You can have positive growth as a result of going through this difficult experience. A number of patients talk to us about living in the moment and appreciating the things they have taken for granted. There’s just a different approach to how you look at life and what’s important and precious.”
Addressing Acute Needs
There’s also a growing acute mental health need at Children’s Hospital. Heather Kreth, PsyD, assistant professor of Clinical Pediatrics in the Division of Pediatric Psychology, joined Children’s Hospital in 2018 to help redesign the “boarding” process, where children and adolescents who visit an emergency room in mental health crisis have to wait for a bed to open up at a psychiatric facility.
These are often adolescents and teens talking about or attempting suicide. The COVID pandemic “poured salt in the wound that was already there” for children who were struggling with their mental health, Kreth said.
The CDC says there has been a 60% increase in the rate of suicide among 10- to 24-year-olds from 2007 to 2018. And it’s the second leading cause of death among adolescents in the U.S., preceded only by accidents and followed by homicides.
“If you ask anyone on the street the top five leading causes of death in 10- to 25-year-olds, the vast majority wouldn’t know that suicide is No. 2,” Kreth said. “Tennessee ranks 42nd in the nation for access to mental health services. It’s a national problem. We haven’t invested enough money and infrastructure into really building those preventive and intervention services that could keep people out of the hospital,” she said.
Kreth said there are a lack of qualified mental health providers for children and adolescents, resulting in pediatricians becoming the de facto psychiatric providers.
“On any given day we’re taking care of between five and 30 children boarding at Children’s Hospital waiting for psychiatric placement,” Kreth said. “We don’t have a dedicated space for these children, so they have to wait to be admitted somewhere. I was hired to think about how we provide the best possible care for children and families in a state of psychiatric crisis when we don’t know the ultimate stop for them in their treatment, and how we do that in a dignified, individualized, trauma-informed way.”
A 2018 Vanderbilt-led study published in the journal Pediatrics, “Hospitalization for Suicide Ideation or Attempt,” looked at trends in emergency room and inpatient encounters for suicide ideation and attempts in children 5-17 years at U.S. children’s hospitals from 2008 to 2015. The authors identified 115,856 encounters for suicide ideations and attempts in emergency departments in 31 children’s hospitals. Nearly two-thirds of those encounters were girls and were highest among teens ages 15-17, followed by ages 12-14.
“When you look at the things we know work to help people receive treatment prior to being in crisis, we do not as a society value and fund those interventions in the same way we do other kinds of medical treatments,” Kreth said. “We need to talk more about mental health and reduce the stigma around it. This is an emergency, and we need to be addressing this differently as a nation.”