Death and dying are always difficult topics to discuss at hospitals. They’re especially hard conversations when they occur within pediatric intensive care units (PICUs), says Tessie W. October, M.D., MPH, a critical care specialist at Children’s National.
“It’s almost easier to pretend that children don’t die in the ICU. But they do,” Dr. October says.
Tragically, some children do die in ICUs. However, even when pediatric patients die, Dr. October adds, the pediatric care team’s relationship with the bereaved family continues. Knowing how to help vulnerable families during these trying times and ensuring they have needed resources can be critical to lessening the health and social consequences of grief. To help clinicians provide better care to families after children die, Dr. October and colleagues recently published an article on this topic in a special supplement to Pediatric Critical Care Medicine on death and dying.
The multi-institutional research team performed a narrative literature review for this budding field. They pored through more than 75 papers to better understand the health outcomes of parents whose child died within a PICU and the different ways that hospitals help families cope with these tragedies.
The researchers found a range of detrimental health outcomes, from a significantly increased risk of parental death in the aftermath of a child’s death to higher rates of myocardial infarction, cancer and multiple sclerosis. Bereaved parents used more health care resources themselves, took more sick days and had more sleep problems than parents who weren’t bereaved.
Likewise, parents whose child died were at a high risk of experiencing mental health conditions including complicated grief, anxiety, depression and posttraumatic stress disorder. Divorce was eight times higher among bereaved parents compared with the general population, and financial crises were common after voluntary or involuntary unemployment.
Knowing which risks parents could face can help the care team respond better if a child dies, Dr. October explains. Their review highlighted simple ways to support families in the immediate aftermath of a child’s death and beyond, such as:
- Giving parents the opportunity to spend time alone with the child’s body
- Allowing friends, family and others to visit at the parents’ discretion and
- Providing easy access to professional support, such as chaplains, social workers and grief coordinators.
Even simple acts such as closing doors and blinds to provide privacy can be helpful, Dr. October says.
An ongoing relationship with health care providers is also important for helping parents grieve, she adds. Children’s National is among hospitals across the country to set up meetings for parents and other family members within weeks of a child’s death. This gives parents a chance to ask questions about what happened in the confusing blur of the PICU and to gather resources for themselves and surviving siblings. Children’s National also provides ongoing support through periodic calls, sending sympathy cards, attending funeral services and in a special annual memorial during which surviving family members release butterflies.
“Our role doesn’t end when a child dies,” Dr. October says. “To help parents through bereavement, we need to maintain that strong connection.”
Another way to help bereaved families is to make sure they have adequate information, she adds, particularly about the confusing subject of brain death. In a different study recently published in Chest Journal, Dr. October and Children’s colleagues sought to understand which information the public typically accesses about this topic.
The team searched Google and YouTube using “brain dead” and “brain death” as search terms. They evaluated the top 10 results on both sites, assessing the accuracy of information using 2010 guidelines released by the American Academy of Neurology. They also assessed the reading level of websites and evaluated comments about the YouTube videos for content accuracy and tone.
They found that there was inaccurate information on four of the 10 websites, six of the 10 videos and within 80 percent of the YouTube comments. Most of these inaccuracies dealt with using terms like brain death, coma and persistent vegetative state interchangeably. “These conditions are very different and affect how we treat patients,” Dr. October says.
The average reading level of the websites was 12th grade, far too sophisticated for much of the public to comprehend, she adds. And the majority of comments on the YouTube videos were negative, often disparaging clinicians and deriding organ donation.
“It’s really important for providers to recognize that this is an emotionally laden topic, and a lot of times, families come to us with information that’s not always true,” she says. “That’s why it’s especially important for the field to respond with empathy and care.”
In addition to Dr. October, co-authors of the Pediatric Critical Care Medicine study include Karen Dryden-Palmer, R.N., MSN, Ph.D., The Hospital for Sick Children; Beverley Copnell, Ph.D., BAppSc, R.N., Monash University; and Senior Author Kathleen L. Meert, M.D., FCCM, Children’s Hospital of Michigan. Dr. October’s co-authors for the Chest Journal article include Lead Author, Amy H. Jones, M.D., and co-author Zoelle B. Dizon, BA, both of Children’s National.
The demand for mental health services continues to be high in the U.S., even among children. The Centers for Disease Control and Prevention (CDC) reports that one in seven U.S. children aged 2 to 8 had a diagnosed mental, behavioral or developmental disorder. In addition, 3 percent of U.S. children aged 3 to 17 had a diagnosis of anxiety, and 2.1 were diagnosed with depression, according to the CDC.
Knowing which children use mental health services can help health care providers improve access and provide more targeted interventions.
Children’s researchers recently investigated this question in the emergency room setting, reporting results from their retrospective cross-sectional study at the American Academy of Pediatrics (AAP) 2018 National Conference & Exhibition. The research team found the number of children and adolescents visiting the nation’s emergency departments due to mental health concerns continued to rise at an alarming rate from 2012 through 2016, with mental health diagnoses for non-Latino blacks outpacing such diagnoses among youth of other racial/ethnic groups.
“Access to mental health services among children can be difficult, and data suggest that it can be even more challenging for minority children compared with non-minority youths,” says Monika K. Goyal, M.D., MSCE, assistant division chief and director of research in the Division of Emergency Medicine at Children’s National Health System and the study’s senior author. “Our findings underscore the importance of improving access to outpatient mental health resources as well as expanding capacity within the nation’s emergency departments to respond to this unmet need.”
An estimated 17.1 million U.S. children are affected by a psychiatric disorder, making mental health disorders among the most common pediatric illnesses. Roughly 2 to 5 percent of all emergency department visits by children are related to mental health concerns. The research team hypothesized that within that group, there might be higher numbers of minority children visiting emergency departments seeking mental health services.
To investigate this hypothesis, they examined Pediatric Health Information System data, which aggregates deidentified information from patient encounters at more than 45 children’s hospitals around the nation. Their analyses showed that in 2012, 50.4 emergency department visits per 100,000 children were for mental health-related concerns. By 2016, that figure had grown to 78.5 emergency department visits per 100,000 children.
During that same five-year time span, there were 242,036 visits by children and adolescents 21 and younger with mental health-related issues*. Within that group:
- The mean age was 13.3
- Nearly 55 percent were covered by public insurance
- 78.4 per 100,000 non-Latino black children received mental health-related diagnoses and
- 51.5 per 100,000 non-Latino white children received mental health-related diagnoses.
“When stratified by race and ethnicity, mental health-related visits to the nation’s emergency departments rose for non-Latino black children and adolescents at almost double the rate seen for non-Latino white children and adolescents,” Dr. Goyal adds. “These children come to our emergency departments in crisis, and across the nation children’s hospitals need to expand mental health resources to better serve these vulnerable patients.”
Because the study did not include reviews of individual charts or interviews with patients or providers, the reason for the disparate demand for mental health resources remains unclear.
*The number of patient visits during the five-year study period was revised on Nov. 1 2018, after updated analyses.
American Academy of Pediatrics National Conference & Exhibition presentation
- “Racial disparities in pediatric mental health-related emergency department visits: a five-year, multi-institutional study.”
Resilience is the remarkable ability of some people to bounce back and overcome stress, trauma and adversity. Being resilient is especially important for parents whose babies are born prematurely – a condition that predisposes these children to numerous health risks both immediately and far into the future and that often triggers a stay in the neonatal intensive care unit (NICU). According to the Centers for Disease Control and Prevention, about 1 in 10 U.S. infants was born preterm in 2016.
Parents of these vulnerable newborns who feel less resilient may experience more symptoms of psychological distress, including depression and anxiety. However, preliminary findings from an ongoing cross-sectional study presented during the American Academy of Pediatrics (AAP) National Conference & Exhibition suggests a strong relationship between resilience and the presence of social support, which may help parents to better contend with psychological distress related to their preterm infant being in the NICU.
“Oftentimes, parenting a child in the NICU can be a time of crisis for families,” says Ololade A. Okito, M.D., FAAP, a Neonatal-Perinatal Medicine Fellow at Children’s National Health System who presented the preliminary study results during the 2018 AAP conference. “Studies have indicated a relationship between higher resilience and a reduction in psychological stress in other groups of people. However, it was unclear whether that finding also applies to parents of infants in the NICU.”
Because parental psychological distress can impact the quality of parent-child interactions, the Children’s research team wants to evaluate the relationship between resilience and psychological distress in these parents and to gauge whether activities that parents themselves direct, like the skin-to-skin contact that accompanies kangaroo care, helps to bolster resiliency.
So far, they have analyzed data from 30 parents of preterm infants in the NICU and used a number of validated instruments to assess parental resilience, depressive symptoms, anxiety, NICU-related stress and perceived social support, including:
- The Connor-Davidson Resilience Scale
- Edinburgh Postnatal Depression Scale
- State-Trait Anxiety Inventory Form
- Parental Stressor Scale: Neonatal Intensive Care Unit and
- The Multidimensional Scale of Perceived Social Support.
The infants were born at a mean gestational age of 29.2 weeks. When their newborns were 2 weeks old:
- 44 percent of parents (16 of 30) reported higher resilience
- 37 percent of parents (11 of 30) screened positive for having elevated symptoms of depression and
- 33 percent of parents had elevated anxiety.
“These early findings appear to support a relationship between low parental resilience scores and higher scores for depression, anxiety and NICU-related stress. These same parents were less likely to participate in kangaroo care and had lower social support. By contrast, parents who had more social support – including receiving support from family, friends and significant others – had higher resilience scores,” says Lamia Soghier, M.D., FAAP, CHSE, Medical Unit Director of Children’s Neonatal Intensive Care Unit and senior study author.
The study is an offshoot from “Giving Parents Support (GPS) after NICU discharge,” a large, randomized clinical trial exploring whether providing peer-to-peer parental support after NICU discharge improves babies’ overall health as well as their parents’ mental health. The research team hopes to complete study enrollment in early 2019.
American Academy of Pediatrics National Conference & Exhibition presentation
- “Parental resilience and psychological distress in the neonatal intensive care unit (PARENT) study.”
Ololade A. Okito, M.D., FAAP, Neonatal-Perinatal Medicine Fellow and presenting author; Yvonne Yui, M.D.; Nicole Herrera, MPH, Children’s Research Institute; Randi Streisand, Ph.D., Chief, Division of Psychology and Behavioral Health; Carrie Tully, Ph.D.; Karen Fratantoni, M.D., MPH, Medical Director of the Complex Care Program; and Senior Author, Lamia Soghier, M.D., FAAP, CHSE, Medical Unit Director, Neonatal Intensive Care Unit; all of Children’s National Health System.
Shayna Coburn, Ph.D., assistant professor and psychologist at Children’s National Health System, has been awarded an American Psychological Association (APA) Achievement Award for Early Career Psychologists.
APA’s Committee on Early Career Psychologists announced the award for early career members who work in all areas of psychology (education, practice, public interest and science) to attend the APA Annual Convention August 2018 in San Francisco.
“At this early stage in my career, the recognition of my achievements thus far is highly valuable as I expand my body of work and strive to advance my career,” Coburn says.
The awards program was designed to reduce barriers to early career members’ attending APA conventions and to support their ability to make meaningful connections and engage in professional development. As a recipient of the award, Coburn received reimbursement up to $400 for convention-related expenses that could cover travel, lodging, meals and/or convention registration fees.
Throughout her career, Coburn has been passionate about clinical and research excellence as well as advocacy. In her current position in the celiac disease program, she has been involved with establishing a new psychosocial health program that combines multidisciplinary clinical service, research and community outreach.
During a previous APA convention, Coburn was able to attend as an exhibitor to promote a free continuing education program. This year was the first time she was featured as a presenter, speaking about celiac disease and psychosocial challenges associated with the disease.
Coburn presented data from Children’s National celiac disease multidisciplinary clinic to report the incidence rates of symptoms that patients experience such as anxiety, depression and stress from a gluten-free diet.
“The most important aspect of the award was having the largest organization of psychologists recognize that during the early stages of my career, I have been involved in work that is meaningful to the community,” Coburn says. “It’s always helpful to have extra support to attend a conference that is across the country from my home in Maryland,” she adds.
The leader and collaborator in a range of scientific, clinical and community-based activities thanks the award for being invaluable in facilitating her attending the conference and being able to participate in career-building and networking opportunities that will help enable her to build professional relationships nationwide.
In nearly every intensive care unit (ICU) at every pediatric hospital across the country, physicians hold numerous care conferences with patients’ family members daily. Due to the challenging nature of many these conversations – covering anything from unexpected changes to care plans for critically ill children to whether it’s time to consider withdrawing life support – these talks tend to be highly emotional.
Several studies have shown that when families believe that physicians hear, understand or share patients’ or their family’s emotions, patients can achieve better outcomes, Dr. October explains. When families feel like their physicians are truly empathetic, she adds, they’re more likely to share information that’s crucial to providing the best care.
“For the most part, our families do not make one-time visits. They return multiple times because their children are chronically ill,” Dr. October says. “Families who feel we’re really listening and care about what they have to say are more likely to feel comfortable as they put their child’s life in our hands a second, third or fourth time. They’re also less likely to regret decisions made in the hospital, which makes them less likely to experience long-term psychosocial outcomes like depression and anxiety.”
What’s the best way for physicians to show empathy? Dr. October and a multi-institutional research team set out to answer this question in a study published online in JAMA Network Open on July 6, 2018.
With families’ consent, the researchers recorded 68 care conferences that took place at Children’s pediatric ICU (PICU) between Jan. 3, 2013, to Jan. 5, 2017. These conversations were led by 30 physicians specializing in critical care, hematology/oncology and other areas and included 179 family members, including parents.
During these conferences, the most common decision discussed was tracheostomy placement – a surgical procedure that makes an opening in the neck to support breathing – followed by the family’s goals, other surgical procedures or medical treatment. Twenty-two percent of patients whose care was discussed during these conferences died during their hospitalization, highlighting the gravity of many of these talks.
Dr. October and colleagues analyzed each conversation, counting how often the physicians noticed opportunities for empathy and how they made empathetic statements. The researchers were particularly interested in whether empathetic statements were “buried,” which means they were:
- Followed immediately by medical jargon
- Followed by a statement beginning with the word “but” that included more factual information or
- Followed by a second physician interrupting with more medical data.
That compares with “unburied” empathy, which was followed only by a pause that provided the family an opportunity to respond. The research team examined what happened after each type of empathetic comment.
The researchers found that physicians recognized families’ emotional cues 74 percent of the time and made 364 empathetic statements. About 39 percent of these statements were buried. In most of these instances, says Dr. October, the study’s lead author, the buried empathy either stopped the conversation or led to family members responding with a lack of emotion themselves.
After the nearly 62 percent of empathetic statements that were unburied, families tended to answer in ways that revealed their hopes and dreams for the patient, expressed gratitude, agreed with care advice or expressed mourning—information that deepened the conversation and often offered critical information for making shared decisions about a patient’s care.
Physicians missed about 26 percent of opportunities for empathy. This and striving to make more unburied empathetic statements are areas ripe for improvement, Dr. October says.
That’s why she and colleagues are leading efforts to help physicians learn to communicate better at Children’s National. To express empathy more effectively, Dr. October recommends:
- Slow down and be in the moment. Pay close attention to what patients are saying so you don’t miss their emotional cues and opportunities for empathy.
- Remember the “NURSE” mnemonic. Empathetic statements should Name the emotion, show Understanding, show Respect, give Support or Explore emotions.
- Avoid using the word “but” as a transition. When you follow an empathetic statement with “but,” Dr. October says, it cancels out what you said earlier.
- Don’t be afraid to invite strong emotions. Although it seems counterintuitive, Dr. October says helping patients express strong feelings can help process emotions that are important for decision-making.
In addition to Dr. October, study co-authors include Zoelle B. Dizon, BA, Children’s National; Robert M. Arnold, M.D., University of Pittsburgh Medical Center; and Senior Author, Abby R. Rosenberg, M.D., MS, University of Washington School of Medicine.
Research covered in this story was supported by the National Institutes of Health under grants 5K12HD047349-08 and 1K23HD080902 and the National Center for Advancing Translational Sciences under Clinical and Translational Science Institute at Children’s National Health System grant number UL1TR0001876.
Roughly half a million babies end up in the neonatal intensive care unit (NICU) each year in the U.S., often sending their parents on a wild emotional rollercoaster. Like other new parents, many parents feel symptoms of depression when their child leaves the NICU. For the majority, these depressive symptoms lift over time. But for others, depression can persist, affecting their well-being and relationships, including those with their new babies.
Thus far, it’s been unclear which parents are at a higher risk for this lasting depression. However, a new study led by Children’s researchers and presented at the Pediatric Academic Societies 2018 annual meeting suggests that parents whose depression lingers six months after their child’s NICU discharge tend to share certain demographic characteristics: They’re younger, have less education and care for more than one child.
“Using a validated screening tool, we found that 40 percent of parents in our analyses were positive for depression at the time their newborn was discharged from the NICU,” says Karen Fratantoni, M.D., M.P.H., a Children’s pediatrician and the lead study author. “It’s reassuring that, for many parents, these depressive symptoms ease over time. However for a select group of parents, depression symptoms persisted six months after discharge. Our findings help to ensure that we target mental health screening and services to these more vulnerable parents,” Dr. Fratantoni adds.
The study is an offshoot from “Giving Parents Support (GPS) after NICU discharge,” a large, randomized clinical trial exploring whether providing peer-to-peer parental support after NICU discharge improves babies’ overall health as well as their parents’ mental health.
Mothers of preterm and full-term infants who are hospitalized in NICUs are at risk for peripartum mood disorders, including postpartum depression. The Children’s research team sought to determine how many parents of NICU graduates experience depression and which characteristics are shared by parents with elevated depression scores.
They included 125 parents who had enrolled in the GPS clinical trial in their exploratory analyses and assessed depressive symptoms using a 10-item, validated screening tool, the Center for Epidemiological Studies Depression Scale (CES-D). Eighty-four percent of the parents were women. Nearly 61 percent of their infants were male and were born at a median gestational age of 37.7 weeks and mean birth weight of 2,565 grams. The median length of time these newborns remained in the NICU was 18 days.
When the newborns were discharged, 50 parents (40 percent) had elevated CES-D scores. By six months after discharge, that number dropped to 17 parents (14 percent).Their mean age ranged from 26.5 to 30.6 years old.
“Parents of NICU graduates who are young, have less education and are caring for other children are at higher risk for persistent symptoms of depression,” says Dr. Fratantoni. “We know that peripartum mood disorders can persist for one year or more after childbirth so these findings will help us to better match mental health care services to parents who are most in need.”
An American College of Obstetricians and Gynecologists’ committee opinion issued May 2018 calls for all women to have contact with a maternal care provider within the first three weeks postpartum and to undergo a comprehensive postpartum visit no later than 12 weeks after birth that includes screening for postpartum depression and anxiety using a validated instrument.
Study co-authors include Lisa Tuchman, M.D., chief, Children’s Adolescent and Young Adult Medicine Division; Randi Streisand, Ph.D., Children’s interim chief of Psychology and Behavioral Health; Nicole S. Herrera; Katherine Kritikos and Lamia Soghier, M.D., Children’s neonatologist.
In 2017, clinicians and research faculty working at Children’s National Health System published more than 850 research articles about a wide array of topics. A multidisciplinary Children’s Research Institute review group selected the top 10 articles for the calendar year considering, among other factors, work published in high-impact academic journals.
“This year’s honorees showcase how our multidisciplinary institutes serve as vehicles to bring together Children’s specialists in cross-cutting research and clinical collaborations,” says Mark L. Batshaw, M.D., Physician-in-Chief and Chief Academic Officer at Children’s National. “We’re honored that the National Institutes of Health and other funders have provided millions in awards that help to ensure that these important research projects continue.”
The published papers explain research that includes using imaging to describe the topography of the developing brains of infants with congenital heart disease, how high levels of iron may contribute to neural tube defects and using an incisionless surgery method to successfully treat osteoid osteoma. The top 10 Children’s papers:
- The role of reactive oxygen species in starting the process of repairing myofiber
- The importance of restoring neural stem/progenitor cells’ neurogenic potential to lessen long-term neurological deficits
- Functional impairment of the brains of infants with congenital heart disease prior to corrective open heart surgery
- Altered regional cerebral blood flow as an early warning sign of disturbed brain maturation
- Excess production of transcription factor Heat Shock Factor 1 can contribute to impairing the embryonic brain
- High levels of iron supplementation and iron overload may contribute to neural tube defects
- In a small study, 18F-fluorothymidine imaging identified subclinical bone-marrow recovery within five days of allogenic haemopoietic stem-cell infusion
- An experimental model exposed to di-2-ethylhexyl-phthalate experienced altered autonomic regulation, heart rate variability and cardiovascular reactivity
- Osteoid osteoma can be safely treated using magnetic resonance-guided high-intensity focused ultrasound and
- Racial and ethnic disparities in pediatric readmission rates vary for chronic conditions such as asthma, depression, diabetes, migraines and seizures.
Read the complete list.
Dr. Batshaw’s announcement comes on the eve of Research and Education Week 2018 at Children’s National, a weeklong event that begins April 16, 2018. This year’s theme, “Diversity powers innovation,” underscores the cross-cutting nature of Children’s research that aims to transform pediatric care.
On May 4, Maureen Monaghan, Ph.D., CDE, clinical and pediatric psychologist and certified diabetes educator in the Childhood and Adolescent Diabetes Program at Children’s National, participated in a panel emphasizing the importance of integrating physical and mental health in the care of young patients as part of the Substance Abuse and Mental Health Services Administration’s (SAMHSA) National Children’s Mental Health Awareness Day. SAMHSA also spotlighted the Children’s National diabetes program as an exemplar of integrated care for children and adolescents.
“Many of our families start out knowing nothing about the disease, and they now have a child whose care requires day-to-day management for the rest of their lives,” says Dr. Monaghan. “It’s not a disease you ever get a break from – which can take both a physical and emotional toll on children and their families.”
To combat this issue and reduce barriers and stigma related to seeking mental health care, the program brings a dedicated, multidisciplinary care team together in one convenient location.
From the initial diagnosis, patients have access to care from a comprehensive team, including six physicians, three nurse practitioners, eight nurse educators, three psychologists, a physical therapist, dietitian and social worker. Each expert counsels the patient and the family, helping them navigate all aspects of living with the disease – from overcoming stress and anxiety to offering healthy meal-planning guides and exercise routines.
“We aren’t just concerned about how they are doing medically or what emotions they are experiencing,” says Dr. Monaghan. “Instead, our team’s integration allows us to focus on the whole child and his or her total quality of life, which is so important for patients and families with chronic disease.”
To learn more, watch this short video, featuring employees and patients of the Children’s National Childhood and Adolescent Diabetes Program, which was presented during the events surrounding the SAMHSA National Children’s Mental Health Awareness Day.